94 About


Why is the blog named "Camp Other" blog?

When you become a Lyme disease patient with persisting symptoms, part of your experience as a patient seeking support and advice on how to treat your condition is learning about the two "camps": One camp is on the side of the patients, and advocates for long term antibiotic treatment for chronic Lyme disease (CLD) - as the bacteria which causes Lyme disease is believed to sometimes persist past initial treatment. The other camp is the IDSA, which while it acknowledge that patients can have persisting symptoms after initial treatment and hypothesizes that the cause of those symptoms is likely autoimmune - to date offers no clinical trials and treatment meeting the definition of their post-Lyme disease syndrome (PLDS).

Working from there, Camp Other is the middle way. It is about collecting data and research from both camps and outside of these camps in order to learn about the mechanisms behind persisting symptoms from different angles. One hope out of collecting this knowledge is to develop proposals for novel treatment trials to help patients ease their symptoms and recover in less time than through existing methods.

Who is the owner/primary contributor of Camp Other blog?

One frustrated and hurting human being who is tired of hearing about the two camps in Lyme disease and being stuck in the middle of them.

In a past life, I was a researcher who wrote and published scientific papers. Most of my papers were internal and used by my employer and coworkers. Some are published in journals. On one occasion I was a technical consultant for a fiction writer's novel - that was pretty cool.

That was then, and this is now. This blog is the closest thing I have which remains of that life. Life is now about chronic fatigue and pain, doctors' appointments, and trying to get a few daily tasks done and have some moments of normalcy around coping with an illness that never wants to go away. But life is not normal and hasn't been for years.

Brief disclaimer: My background gives me some knowledge about the research I'm writing about, but I am not an infectious disease specialist or microbiology researcher nor am I degreed in those fields. I don't make any claims to being an expert in this area. I only hope that I can understand the research that IS out there so I can help myself, and possibly help others. And I hope others who are educated in biology, microbiology, entomology, acarology, neurology, immunology, and fields which touch on the research of tickborne infections will also chime in here from time to time.

What one image sums up the experience of a patient in your situation?

This one from the patient blog, Lymejello.com (zoom in for closer look):

"Let's Not Make A Deal" - Artwork from julieridl.wordpress.com Creative Commons License

Julie's art is awesome. This image perfectly captures the chronic Lyme disease patient's experience when being confronted with treatment options and ideologies.

Why are you anonymous?

There are a number of reasons why I choose to be anonymous as a patient with a controversial disease.

What is your patient story - how did you get chronic Lyme disease or post-treatment persisting symptoms?

Several years ago I went for a hike in the mountains and that evening discovered a tick embedded in my back. I put the tick in a container and went to the clinic after the weekend was over and showed the doctor the tick and my new rash. I asked about Lyme disease, but was told there was no Lyme disease in the area and was given 200 mg of doxycycline to placate my concern.

A week went by, I felt okay, and then wham! I felt ill, like I was coming down with a bad flu. I went back to the clinic, and told them I felt like every tissue inside my head was swelling, with swelling behind my eyes and in my cheeks and deep inside my head. I was then diagnosed with a sinus infection, and sent home with a few days' worth of Zithromax. This didn't feel like any sinus infection I'd had before, but I began to feel a little better and worried a little less. But I wondered why the rash they told me was "probably an allergic reaction to the bite" was still there. So I went back to the clinic and requested a test for Lyme disease, and with reluctance an ELISA sample was taken. The result was negative.

Within a few days of finishing the Zithromax, I began to feel really awful. The worst I ever felt in my life. I either thought I was going to die or wish I was dead, it was that bad. Being unconscious was a welcome space to be, so if I passed out it that was fine by me.

I had a fever, chills, swollen glands - not only under my jaw but all around the back of my neck; pain in every single joint that stabbed whenever I moved even just an inch to the side while lying down, night sweats, constant muscle pain, shortness of breath, and a never ending migraine. There was immense pain at the base of my skull and entire neck.

I could barely move. Every step was painful and it look a long time just to crawl to the bathroom. I had to take baths because I did not have the strength to stand. Some days I could barely make it to the bath, but I did because sitting in very hot water was one of the few things which helped the bonebreaking pain I was in.

During this time, I began to lose the ability to read unless it was about the length of a Tweet. Coupled with this, I also lost my ability to retain anything I just read. I had trouble following conversations and could not remember whether or not I told someone something. My perceptions became a patchwork quilt of disjointed memories where confusion reigned.

It was a challenging time for me on numerous counts. I was working on a project that required a lot of reading, writing, and synthesizing data when this hit and realized I was incapable of working.

I had to stop. Between pain and cognitive dysfunction, I couldn't do my job.

Fast forward a little. After I stopped working, I dipped into my savings to see an LLMD. With my insurance, there was no way to see an infectious disease doctor without a referral, anyway - and I was hoping that with aggressive early treatment I would recover soon.

Early was not early enough, however. It turned out the clinic's misdiagnosing and treating me with the wrong antibiotic cost me, then after that, recovering from an allergic reaction to a different antibiotic cost me more time.

My Lyme disease had disseminated. I also found out several months later one of the reasons I had been as sick as I was early on was because I was coinfected with babesiosis. Immune testing had revealed an immunodeficiency. And I retested for Lyme disease and my result was now positive.

Between this history and other factors, I agreed to try antibiotics and antiprotozoal medication long term. They helped me enormously, as I went from being in pain so bad I wanted to die and not sleeping most nights to wanting to live and sleeping five hours a night without interruption. This was not optimal; I wanted a cure. But it was a huge improvement in my book so I consider the treatment of value.

After several more months of treatment, I got well enough that I could go back to work for a while. I began working part time and eventually full time. Then I got sick again, and eventually had to leave my job.

Since my initial round of treatment I have experienced ups and downs and complications from both my disease and the treatments themselves. I'm not sure what to do next; it is unclear what the best course of action is for someone in my current situation.

On and off, I continue to see different specialists to see if there is any other condition which causes my symptoms.

Mostly, it is a fruitless enterprise. Mostly, I am sick of everything medical at this point.

How does your medical condition affect you - especially in the writing of this blog?

As of November 2012, I find that I am cognitively affected in these ways:

  • First of all, I have fatigue and brain "fog" to work through. The fog has gotten better with treatment and time, but the fatigue can be relentless. I push through it sometimes...only to crash. Other times, I can't write an entry - even a short one.
  • I have chronic headaches and sometimes they are bad enough I can barely think straight, but I try to write anyway.
  • Depression. This is an extension of living with chronic illness and not the cause of it. It can kill the motivation to research and write.
  • Trouble prioritizing and creating outlines for entries. "Free form" writing is usually easier for me than structured analysis - when it used to be the opposite pre-Lyme disease.
  • Tendency to ramble. I have trouble cutting a large post down to size.
  • Tendency to "lose the plot" and begin writing about something unrelated for some time before I catch myself - sometimes much later. These unrelated paragraphs become the drafts for other posts... unless I entirely did not catch myself.
  • Word salad and occasional word substitution. I used to have no problem using "there" and "their" properly, and used to even be a member of the grammar police in the past. I can't be any more, because apparently even when I know something is wrong, I don't always catch my own mistakes that I wouldn't have made in the past.
  • Word substitution can also be similar sounding words such as using "household" when I intended to use "housebound" or a noun substitution from the same category, such as "oven" for "fridge". Spellchecking does not catch these errors.

As of November 2012, I am physically affected in a number of ways, too. My main symptoms are daily joint and muscle pain, paresthesias, digestive problems, skin rashes (do not appear to be erythema migrans but other kinds of rashes), fatigue and pain upon exertion. I experience a crash if I "push" myself hard physically, and have to lie down for a long time before trying to do something else which requires seemingly normal levels of effort.

Much of my life is spent in bed or on a sofa with a laptop. I go out occasionally, but it is tiring and hurts. I have trouble sitting for 2 hours upright in a chair, so a long movie can be painful to watch without pain medication and/or additional padding. I try to watch Netflix at home. Standing in one place also hurts, even with a cane to lean on - and walking is actually less painful.

I periodically get severe attacks of pain in different parts of my body for no reason I can ascertain except that my nervous system decided to go haywire. Lucky me.

Now you know (if you didn't before) why I want more research on my condition, and why I want to spend time learning as much about these damned spirochetes and my immune system as I can.

Why are you writing this blog?

I wrote a critique about the Chicago Tribune's article published in 2010, "Chronic Lyme: a dubious diagnosis", and that became the basis for this blog. And as time went on, I realized that improvements in cognitive functioning from treatment I was taking had made reading and writing easier again - so doing online research and writing was something I could do while my primary symptoms are fatigue and pain.

Distraction is a very good thing when you are in pain, so I do everything I can to distract myself. Fatigue means everything happens on its own slow timeline, but that matters less when one is blogging. Your deadlines are your own when it isn't a job. Blogging seemed like a sensible thing to do that might help me and other people. So those are reasons why I have written and why I continue to write.

And it doesn't hurt to try to learn something new if I can. (Retaining it though... that's still a different matter.)

Are there plans to have anyone else contribute to the blog?

Yes. I am looking for guest writers who work in sciences to contribute via their own short articles and interviews for the blog.

How can anyone contact you?

Email me at CampOther at gmail daught calm (Spelled that way to deter spambots.)

Or you can leave me a comment with contact information and request within that comment that I do not unscreen it.

What happened to your old FAQ?

I felt it was outdated and I needed an "About" section written for a wider audience, so I removed it. It is available upon request.

What message would you have for anyone working on Lyme Disease and other tick-borne illness research?

94 comments:

  1. There is a Lyme petition at the following address:

    https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

    The petition will only be up until 2/10/13, and we need 25,000 signatures for the White House to review and respond.

    This is the best chance for raising Lyme awareness I have seen, so please spread the word!

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  2. Hi Anonymous,

    Thanks for letting me know - though I am already aware of this petition and others for specific states making the rounds. Discussion on this deserves a future blog post in and of itself, really, and I'd like to write about petitions and protests towards the IDSA and aimed at state legislature as well.

    The word is getting it out there - a lot of people have already seen the link for this petition circulated through many Lyme disease support groups and mailing list, and now people will know about it here - though this is not the best place to post it because people do not read comments on my "About" page on a regular basis.

    Best wishes for your health,

    Camp Other

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  3. Omgosh, thanks for your blog...and Camp Other sounds so much like where I stand in all this as well. My current hardship with the camps is that as a patient who is getting worse on long term abx, I have no where to turn...Camp One is so busy fighting for that if you ask some hard questions about them you are seen as a traitor. Ask your dr and you could lose your treatment. Ask another dr and your dr could get in trouble. Not that one would, but try to slip over to Camp Two to see if they have any information and rather than help you all they do is feel vindicated. So, here I stand...sick, suffering, also trying to figure it out...also taking the middle way. Camp Other is so perfect a name. Anyways, thanks. Maybe one day I can contribute when my brain is working a little better.

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  4. Hi Anonymous,

    Welcome to Camp Other blog!

    I am sorry you are having a tough time and are feeling worse on long term antibiotics. If you don't mind my asking: How long have you been taking which antibiotics and what was your diagnosis? Did the diagnosis include tickborne coinfections outside of Lyme disease?

    Not knowing what you have and how far along you are in treating with antibiotics, it's more difficult for me to remark on its utility for you. But I can say that observationally, some patients tend to get worse before they get better. This is due to the Herxheimer reaction, but it can also occur outside of it. It can take a long time to improve and there can be pattern of "one step forward, two steps back" where the overall trend in time is towards improvement.

    Are you tracking your symptoms in any way, such as a list of symptoms and a date column on an Excel spreadsheet? Or an iPhone app for tracking Lyme disease symptoms? There are many options available now, including a good old fashioned paper notebook.

    Regarding the Camps: As a patient, I think it's important to look at the big picture and consider everything you can, and try to figure out what applies to you in the situation you are facing.

    There are people who have tried long term antibiotic treatment and improved, and went from being very ill to capable of working again. There are also people who have tried long term antibiotic treatment and have not improved, and just didn't get anywhere. Why is not clear and this is why more research is needed on individual patients to see what they have in common.

    It's my take that both/all Camps have the answers, and they aren't the same answers for individual people because they are individuals. What was in the tick that bit you? What underlying immune deficiency might you have had? What genetic tendencies/conditions might you have which were triggered by getting a tickborne infection? I don't know. And it takes a while to untangle what happened.

    And so, because of this: Everyone who is suffering from the effects of tickborne illness should be respected and helped to make the best choice of treatment for whatever medical conditions they have.

    (more)

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  5. (cont'd)

    If a doctor would call you a traitor for asking questions about your treatment, then you need to see a different doctor. One who respects you and can answer your questions. This is your body, after all, and your life - and it only makes sense to ask hard questions about your treatment (e.g. duration, type, risks, benefits, uncertainties, evidence, drug interactions, side effects). Being a well-informed patient is always a good thing.

    You can ask each doctor independently about what they think of a specific treatment, and if you are concerned they will disagree with a specific treatment then you can either use that as a guide to not see that doctor again - or you can ask them what evidence they have that the treatment is not of value. Get whatever information you can from them, leave, and evaluate its value yourself when you have some distance and access to research to see if their complaints are worth noting (or not).

    There is no need to mention "Dr. Foo does X treatment". Just mention "X treatment" and see what other doctors have to say about it and why. Then ask for papers and articles about the topic and see if they give them to you; use those as a starting point for your investigation.

    This is time consuming to do. In a way, following the middle way is not easy. But as I saw it, once I knew I got Lyme disease and my symptoms were not resolving with a few weeks' antibiotics, I was having to shake myself out of my denial and realize I was dealing with my symptoms for the long haul.

    Basically, it was already not going to be easy, no matter what I decided. Once you have persisting symptoms after initial treatment for Lyme disease, you have entered new territory that is not well-defined and needs more scientists on the case. In the meantime, you are placed in the unfortunate position of having to decide for yourself what you are willing to do and how to do it as safely and effectively as possible.

    I can't tell anyone else what the right thing is to do for more than one reason:

    First, I am not a medical doctor, and not your doctor, so it would be unethical and foolish for me to tell you what to do. I can in a general sense say, "This is what I've seen other doctors prescribe or do" and point you to a link or two, but that's the extent of it.

    Second, this is my experience, and I have my own medical history which could very well differ from yours - so my treatment will differ anyway. For example, if I got Lyme disease and babesiosis and already had, say, kidney problems, and you contracted Tularemia, some rare conifection, and had COPD, my treatment would be vastly different from yours.

    Third, the science is incomplete in this area...Much as is known about Borrelia and other tickborne organisms and viruses, we don't know everything and new knowledge is gained every day. I can't say what the best course of action is because this knowledge is incomplete; we haven't arrived at a place where every patient who is treated will recover 100%. Observation of the Lyme patient community bears this out, and more research is needed to figure out how to get us closer to 100% if not 100% itself.

    Anyway, my two cents - and of course, you get what you paid for it.

    Thank you for stopping by, and please comment when you are up to it... I realize I haven't given readers something new to actually comment on since January, and hope to get a long awaited post up here soon.

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  6. (I am not "Anonymous" - I am velvetmagnetta)

    Hi Camp Other,

    I have been reading your fabulous blog for about 5 yrs - ever since I was diagnosed with and began treatment for Lyme disease. I had been sick and getting sicker for 30 yrs before I found out it was Lyme the whole time! So, when I started taking antibiotics for it - I got much worse and was in more pain than I thought humanly possible. I didn't know this level of pain even existed in reality.

    This horrible state of pain went on non-stop with no breaks for 5 whole years. Needless to say, it was Hell.

    I have read just about everything there is to read about Lyme disease on the internet including quite a few scientific papers trying to figure out what exactly is going on with this disease - is it dead after 5 years of antibiotics? Is it hiding? What on earth happened after I killed it to cause the incredible level of pain I was in?

    Right away, I saw that there was a huge controversy about whether the disease is chronic or not. Then, I noticed that some people adamantly believe that it is chronic and other just as adamantly believe that it is not. Personally, I had no idea and the more I read I realized that nobody else knew either. And yet, they were staunchly engrained in one side or the other.

    There is no room for belief in science! Science is about coming up with an assumption (hypothesis) and then doing experiments (including a control group) and collecting data to prove or disprove that original assumption.

    Nowhere in the "scientific method" does it encourage belief without proof!

    (to be continued...)

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  7. (...continued)

    I just couldn't believe how angry people got when I questioned their assumption that the disease is still alive even after a rather aggressive round of antibiotics. They hated me for it.

    I have been so ill (could hardly even get out of my bed) that I just want to get at the truth. What is wrong with everybody? Your voice is the only reasonable one in the Lyme mob crowd. Thank you for that. I am truly grateful.

    Since you have to most open Lyme mind, I want you to be one of the first people I tell about something that is helping me. I have tried EVERYTHING and nothing has worked for me except this one thing: jasmine auriculitum.

    It is like an essential oil, but it's called an "absolute" because of the way it's made - it's extracted using alclohol or something like that. This is a particular rare rare jasmine from India. It is not FDA approved for ingestion, but I was so desperate that I tried it anyway.

    I began by putting 2 drops in a warm cup of green tea. It caused quite a herx reaction so I stopped it for a few days until my body calmed back down. Then I took two drops again for two days in a row and increased it to 3 and then 4 drops.

    Another bad herx happened. The difference, though between this herx and all other herxes I ever had was that after it was over, I actually felt better!!!! I couldn't believe it!!!!

    So, now I just put the drops directly under my tongue (about 6 at a time) hopefully soon I will be able to do it twice a day. It is quite pungent, so you will want to wash it down with some water.

    I have no idea why this stuff is working when all other fancy cures didn't do anything for me. It might have something to do with the calming effect it has on the nerves. But I think the jasmine is actually fixing my nerves!

    I think perhaps the reason there are so many different manifestations of symptoms for Lyme sufferers is because at the heart of it, it is a nerve disease. And nerves are everywhere and they control everything in our bodies, so if they're broken, everything's broken.

    Jasmine is fixing the terrible spine pain, it's loosening my painful and tight jaw, it is fixing my painful intestinal issues, it has completely cured this weird hot/cold body temperature thing that made my body feel like I was in a sauna and in the arctic at the very same time! Another strange symptom it has fixed is this horrible feeling of being poisoned all over my body.

    I have so much more energy than I've ever had and I think I'm almost cured entirely - for real! I know it will be difficult for you to believe because you've heard everything from the bogus salt/vitamin C regimen to thermal therapy where people heat their bodies up and actually burn their internal organs! I know! I'm right there with you reading all this crazy stuff.

    With this jasmine, there are no side effects and it wouldn't hurt to try it, right? So, why not?

    Warmest Regards,

    velvetmagnetta

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  8. Hi velvetmagnetta and welcome to Camp Other blog!

    I've read your post on LNE and your comments here, and before I respond to all of it, I'd like to ask one question (it might not seem relevant, but it is): Have you ever been tested for tuberculosis (TB)?

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  9. Over the many years I've had Lyme, I have been tested for many different diseases. All my tests have always come back negative (except the Lyme test) so it's possible TB was among them but I don't remember having tested for it specifically. I know from having read you for so many years that you have done your share of extensive research on the Lyme subject, so I'm curious, why the TB question?

    I think I may be a unique case in that I don't have anything else wrong with me except for Chronic/Long-term/post-Lyme. So all my myriad problems can't be attributed to anything else - such as mold toxicity or MS or allergies or gluten intolerance, etc., etc.

    -velvetmagnetta

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  10. DO NOT TAKE JASMINE OF YOU ARE PREGNANT OR NURSING!

    This is posted on the website where I get my jasmine. I also do not know if it is safe for children to take. Please be cautious and ask your doctor first!

    -velvetmagnetta

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  11. Whoops! Wrong spelling! It is instead "jasmine auriculatum"

    -velvetmagnetta

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  12. velvetmagnetta,

    It is completely anecdotal thus far, but extracts of Jasmine have been used in alternative medicine/ethnobotanic studies in the treatment of Mycobacteria infections. I don't think there have been any double blind, random controlled studies. But thought I'd make a note of it anyway in case later on it turns out to be relevant - and maybe you might want to consider the possibility of having other infections which may be responsive to treating with drugs or herbs which are active against Mycobacteria. You would have to track your symptoms, and consult a knowledgeable medical professional who has experience with sorting out whether or not you have another infection.

    Jasmine is regularly consumed in tea in southeast Asia. Jasmine tea is a regular item on Thai restaurant menus across North America and you can pick it up at any health food store and a number of chain supermarkets. Extract of jasmine is on the GRAS list - generally recognized as safe as a food item, according to the FDA - their website lists Jasminum officinale L. and other spp. of Jasminum as safe for consumption, which I will make the assumption includes Jasmine auriculatum.

    One reason Jasmine tea might be beneficial for people is that it is usually not just made with extract of jasmine but combined with green tea, which there have been ongoing studies for its health benefits including cognitive improvement (I just tweeted some articles from Science Daily today mentioning new studies on green tea).

    Jasmine on its own has been known to have sedating properties and can help one to relax.

    There has been some research on Jasmine's antibiotic properties conducted on E. coli http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792499/ in India and a study in Pakistan on a wider range of bacteria - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3838543/ namely, the research states "The cold water extract of J. officinale (leaves) showed 16 mm zone of inhibition against P. aeruginosa followed by B. subtilis (13 mm), E. coli (7 mm), and P. vulgaris (7 mm)."

    But research is limited, and given there are limited studies on its use for any condition/indication, I can't state whether or not its use can be problematic or if it is has any adverse reactions or will interact with any other drugs, herbs, or supplements.

    If you have experienced improvement with this treatment, it's good to track your improvement using a symptoms diary and also track what dose you took how often and if you are taking anything else (old or new supplements, medications, herbs, change in diet). The best way to track the potential for a treatment is to eliminate any confounding factors as much as you can so that no other factor is responsible for improvement. This is easier said than done.

    Next, I'll respond to a few things you said more directly...

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  13. velvetmagnetta wrote,

    "Right away, I saw that there was a huge controversy about whether the disease is chronic or not. Then, I noticed that some people adamantly believe that it is chronic and other just as adamantly believe that it is not. Personally, I had no idea and the more I read I realized that nobody else knew either. And yet, they were staunchly engrained in one side or the other.

    There is no room for belief in science! Science is about coming up with an assumption (hypothesis) and then doing experiments (including a control group) and collecting data to prove or disprove that original assumption."


    You see the problem we're having then. This is what I've been saying all along: We need more research. Even those who have been doing the research for years have yet to definitively nail down whether or not Borrelia burgdorferi persists in human hosts, and patients are caught up in the middle of the debate, left to their own devices to figure out what to try and what to avoid, who to listen to and who to avoid. It is a mess.

    "I just couldn't believe how angry people got when I questioned their assumption that the disease is still alive even after a rather aggressive round of antibiotics. They hated me for it."

    I won't hate anyone for having a differing opinion or starting assumption. I may disagree, but I won't be a hater. It will be push comes to shove, though, if someone with a differing opinion or starting assumption starts engaging in personal attacks and insults, ad hominems... or diagnosing from a distance and labeling without data. Then that's when I get out my moderating hat and plunk the comment in the internet trashbin. But I'll listen to someone with a different opinion and consider that opinion as long as they are respectful.

    "I have been so ill (could hardly even get out of my bed) that I just want to get at the truth."

    This is exactly where I've been. Sorry you've been living in my world, too.

    "What is wrong with everybody? Your voice is the only reasonable one in the Lyme mob crowd. Thank you for that. I am truly grateful."

    Thanks for the compliment. I'm not sure I'm always reasonable, but I aim for it.

    What is wrong with everybody? Not sure what you mean - you'd have to describe what you mean by "wrong". If you mean that from your perspective, others are being unreasonable, I might agree or disagree depending on what you're witnessing.

    From my point of view, when people are angry and hurting - or egotistical and defensive (depending on what side/angle of the Lyme disease controversy you're taking) they lose some of their objectivity. And when people are entrenched in a position, they often find it hard to let it go even if evidence points to their position being invalid or at least not quite correct. I see this happening with people/parties on both sides of the Lyme disease controversy, and unfortunately, this is what gets air time, and this is what the media often pounces on. It doesn't bother to do, say, an hour long hard-hitting scientific documentary about the uncertainties in Lyme disease and what microbiologists are looking at. We need someone like Nova or National Geographic to go in there and interview Dr. Stephen Barthold, interview Dr. Kim Lewis and others and say not only what we know about Borrelia burgdorferi - but also what we don't know.

    (more)

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  14. "I think perhaps the reason there are so many different manifestations of symptoms for Lyme sufferers is because at the heart of it, it is a nerve disease. And nerves are everywhere and they control everything in our bodies, so if they're broken, everything's broken."

    It's well documented that the nerves are affected in Lyme disease, and those who get late stage symptoms can have nerve-related pain, paresthesias, and peripheral neuropathy. So I'm not surprised by this at all.

    Without quoting the rest of your symptom improvements since taking Jasmine, I guess my one concern upfront is that since it isn't well documented whether or not what you're doing can cause negative effects, I think it would be wise to partner with a doctor who is willing to monitor the important stuff while you're using this treatment. In particular, running regular CBC tests and monitoring your liver and kidneys. Because your liver and kidneys could (potentially) be negatively affected, and damage done to them before you experience any symptoms related to that damage. So I'd talk to a doctor about it, and see if you can get these tests done and how often he or she would recommend them (some might recommend monthly blood draws; some every 3-4 months) based on this treatment as well as any other conditions you might have.

    Because all spp. are generally recognized as safe, taking it is probably less of an issue than trying other things, but because you are taking it daily and in concentrated form, there may be unknown effects we can't foresee. Jasmine and jasmine tea are usually consumed sporadically and may have a different concentration than what you're consuming.

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  15. Wow. I just have to say, "Wow". You have done so much more research than I have. You're awesome. Thank you, yet again.

    OK. Three "Camp Other" comments up, you suggested that the benefits I am getting from the Jasmine may be due to the well-known health benefits of the green tea / Jasmine mix. It is important to note that I no longer drink green tea at all and just take the jasmine drops right under my tongue, followed immediately with a glass or two of water.

    I'm taking the Jasmine Auriculatum straight out of the bottle without the warm cup of green tea because I imagined that perhaps some of the beneficial compounds found in the Jasmine may be altered by the heat of the tea. So, I wanted to make sure I received the maximum potency of this Jasmine Auriculatum.

    So all these benefits I am receiving are most definitely from the Jasmine. I am and have been disabled for many years now, so my daily routine doesn't change much. The only thing different in my life is this jasmine.

    One of my many many many major problems is extreme spine pain. My spine hurts all up and down it, but mostly in the neck. Jasmine has changed that for me. The pain that used to radiate out from my spine now radiates in a shorter radius...If that makes any sense. What I'm trying to say is that my spine pain began at all the vertebrae and the pain extended out from there about 10 inches each side, left and right, forming a wide strip of pain all up and down my back.

    An immediate effect I noticed after taking the jasmine for a few weeks was that my spine still hurts, but now it hurts narrower . Now it hurts from each vertebrae out to about 5 inches left and right.

    I hope this makes some sort of sense. I find it hard to describe. But the very important point is that it has permanently effected my spine in a positive way! My nerves are actually changing! They are finally getting fixed, I believe, like no other drug, antibiotic, painkiller, or special diet has ever done.

    -velvetmagnetta

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  16. velvetmagnetta wrote:

    " It is important to note that I no longer drink green tea at all and just take the jasmine drops right under my tongue, followed immediately with a glass or two of water."

    Noted.

    "So all these benefits I am receiving are most definitely from the Jasmine. I am and have been disabled for many years now, so my daily routine doesn't change much. The only thing different in my life is this jasmine.

    One of my many many many major problems is extreme spine pain. My spine hurts all up and down it, but mostly in the neck. Jasmine has changed that for me. The pain that used to radiate out from my spine now radiates in a shorter radius...If that makes any sense..."


    So, you're taking no other medications or supplements (e.g. vitamins, herbs) and just jasmine? That's interesting. I couldn't say what jasmine's method of action is on your condition (especially since it's not certain that you may have something else going on yet to be diagnosed) but one thing I learned between the time I last left a comment for you and your most recent response is that jasmine is also being studied for anti-inflammatory properties. Whether antimicrobial, anti-inflammatory, or some combination of both effects are what you're experiencing, I couldn't say - but I'm glad to know of your relief.

    I'm not a medical doctor, so neither can I support nor recommend against this treatment. I do, however, continue recommend consulting a doctor who is educated and certified in the treatment of your condition who would monitor your progress and check you with blood tests periodically so you know not only whether this approach with jasmine has any detrimental effect and if in fact any other condition presents itself.

    Best wishes for your continued improvement,

    CO

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  17. Good Day, Camp Other!

    I'm ready now to respond to some more of your well-thought out comments. First, I do not have any other health problems other than Lyme or what I believe is now post-Lyme. I did have the co-infection Babesia, but have taken 3 years of antibiotics for that one. And I assume (hope, anyway) that the babesia is dead as well.

    I really really really don't have any other problems - as if Lyme is not enough! But I know many other people out there have multiple health problems and my heart goes out to them. Lyme became a huge monster of a problem for me because it went undiagnosed for 30 years. The Lyme that i had was neuro-lyme with many strange spasms, some OCD symptoms, extreme fatigue, and extreme brain fog - but these problems got much much worse once I began antibiotic treatment 6 years ago.

    This makes me think that it is not just the live bacteria that causes all the various neurological symptoms. Something about killing them all at once drastically increased my nerve problems. And I never really got over that part for years! Also, I never experienced the intense and unbelievable pain until I killed them off.

    So, I've been sitting here in my bed forever with no hope of getting better because nobody really knows what's wrong with all of us who have taken antibiotics for years and are still terribly disabled and in horrendous pain.

    I don't really buy into the "toxins" theory because nobody has been able to name the chemical structures of these supposed toxins. Plus, I took quite a bit of cholestyramine - a drug that aids the body in the removal of toxins - and it made me feel a little better at first, but then began causing me great pain - pain so bad that I truly wanted to die.

    The theory that all the pain is due to inflammation is also suspect because I could take tons of Advil and get only a little relief from it. The Advil may have helped any inflammation I did have, but it certainly did not address any of my other unspeakable pains. The same goes for the opiate painkillers. They helped my incredibly aching muscles, but did not even touch the worst pain - a pain that is hard to describe but it was all over my body to the very core.

    (continued...)

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  18. (...continued)

    Then, my doctor put me on Neurontin (Gabapentin) which is specifically for nerves, and that helped quite a bit but I would still get in crying, moainng, rolling-around-on-the-floor pain that the gabapentin didn't even touch.

    Needless to say, I have been very desperate for a very long time - no amount drugs or stretching of diets would help me at all!

    I have never posted any treatments online before because nothing has EVER worked for me. Everything I've tried has always failed. This is why I am now posting about Jasmine Auriculatum. I can't believe it. It's just an herbal extract, but it is not only drastically decreasing my pain, but also, I believe, actually fixing whatever is wrong with me.

    Jasmine does have a nerve calming effect - but I must now wonder how exactly? I have been on the anti-anxiety medication Lorazepam for years and it does calm my nerves for a little while, but when after my body metabolizes it, the anxiety always comes right back.

    Not so with Jasmine Auriculatum!

    Jasmine gives me a very slight initial sedating effect, but it wasn't until I has been taking it for about a month that I began feeling drastically better. And the biggest, most exciting thing is that it is permanent! This is what makes me think that whatever the mechanism, jasmine is either fixing my nerves or allowing my body to heal the nerves somehow.

    And I mean fixing my nerves for real. Not a temporary placebo effect but a true and real solution that lasts.

    I do have an intelligent and caring LLMD who is monitoring me. Thank you so much for the suggestion to check my liver with a blood test! What an awesome suggestion. I knew I was right to write to you about this.

    I know from reading your blog all these years that you do an impressive amount of research on the subjects you cover (and, I might add, rather unbiased). But, make sure you do not suffer from "paralysis by analysis"! At some point you may have to dive in and try it for yourself.

    Warm Health Wishes,

    -velvetmagnetta

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  19. Hello! velvetmagnetta here again -

    I wanted to clarify what I meant by, "What is wrong with these people?"

    I, like many many others, have been sick for way too long. I was lucky in a way because my Lyme test came up positive and I received long-term antibiotics right away. I was pretty ill by the time I started the treatment - I was having trouble walking, I was totally exhausted all the time, my mind was getting worse and worse, I had strange fevers every day several times a day and would wake up in soaking wet sheets, and I also had a very hard time swallowing for some reason.

    But these symptoms were NOTHING and I mean NOTHING compared to the symptoms I got after the sixth week of Minocycline. I got so sick with pounding migraine headaches, joint pains, joints literally scraping together, a now constant fever, skin so sensitive you couldn't touch me, my sensitivity to light got so bad that a little sliver of sunlight would cause a huge nasty migraine, I could not longer seem to go to the bathroom correctly (intestinal paresis, I think), such confusion that I couldn't understand what anybody was saying to me, facial paralysis so bad that I couldn't talk, a strange and extremely uncomfortable feeling of being electrocuted all over my body along with a supremely nasty feeling of have some sort of poison running throughout my body that I felt a great need to expel,not to mention my spine becoming so stiff I could hardly move, a crazy feeling of not being a part of my body but somehow stuck way down inside it - like it wasn't really my body or something along with the strange and extremely unsettling feeling of my spirit being pulled out of my body though my spine, and oh God, so much more.

    After 5 years on antibiotics and these symptoms not improving, I decided to stop antibiotic treatment. I just don't think a person is supposed to be in that much pain. I don't care who says, "Oh, it the Herxheimer effect and it will get better. It just means your body is healing." Well, I call B.S.!!!

    I believed that for years and years and years and I never got better - not even a little. I only started improving very slightly and very slowly when I finally stopped the antibiotics.

    So, this is the place where I am coming from when I ask, "What is wrong with these people?

    (continued...)

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  20. (...continued)

    Specifically, when I found a comment online saying that they were sick of people calling Lyme an auto-immune disease because is not. I agreed with the commenter and posted a reply about blog of an incredible research paper I had found on the internet called "Spirochetes Unwound" that was describing a paper by Linda Bockenstedt. She and her group found spirochetal debris in mice left over after a course of antibiotics. It was like a smeared out soup of little pieces of the Lyme bacteria spread out all over the mouse ears and joints.

    Incredibly, she found this dead bacterial debris to be immune reactive!

    The debris that was certifiably dead (certifiable due to a real-time imaging technique that allowed imaging while the mice were still alive) was actually INTERACTING with the mouse immune systems causing their bodies to produce a large number of cytokines to fight the non-infection!

    I couldn't believe it! It seemed to fit my predicament exactly. It would explain why more and more antibiotics weren't doing anything good for me - you can't kill what's already dead! This was also the first truly new thing I had heard about Lyme disease and was eager to see what direction this would take researchers studying Lyme.

    Well, not everyone was as excited as I was.

    When I posted this novel approach to Lyme research, I did not get the comments and replies I expected. Instead, I was accused of being in bed with the CDC and the IDSA and trying to dismiss their pain! Huh. Me dismissing others' pain?

    They were so entrenched in their belief that this disease is chronic and hard to kill that they would not acknowledge the evidence of the paper. The paper had found that indeed the infection was killed in a matter of weeks and they could actually SEE the dead bacteria pieces. Earlier in the experiment they were able to see live spirochetes wiggling around. At the end of the experiment, all spirochetes were dead dead dead.

    I wanted to point out that our continuing pain may not, in fact, be from an active, ongoing infection. And if that is so, more antibiotics ain't gonna make a darn bit of difference and we need a drastic change in our Lyme treatment paradigm.

    How does one rid one's body of dead bacteria? Dead bacteria that is causing crazy bad pain?

    Anyway, I got ripped a new one from those people. I was shocked at the response and realized then and there that the people fueling this Lyme controversy are not interested in science and don't even seem to be interested in getting better!

    That is why I say, "What is wrong with these people?" Because what in holy heck is wrong with these people???

    -velvetmagnetta

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  21. Hi! velvetmagnetta here!

    "What is Wrong With these People?" Part 2:

    Now for the other side of the equally illogical argument. Every doctor I've been to (except for 2 excellent and caring LLMDs and 1 awesome LL Nurse Practitioner) throughout my 30 years of becoming sicker and sicker has either told me there is nothing wrong with me (even though I was young and exhausted and had pain all over my body) or said it was all in my heard and sent me to a psychiatrist or even simply dismissed me altogether.

    Most recently, I told a doctor about my terribly aching spine and how I could not seem to stand up straight. He told me (and this really happened) that I should have better posture!

    Wow. Thanks, Doc. Wait. Isn't that what I just said I COULDN'T do?

    This same doctor sent me to a psychiatrist (as usual) and I went even though every time I go to a psychiatrist, they try to put me on antidepressants and antidepressants actually make me depressed! I don't know why, but they effect me in a very negative way. I have been on about 5 different ones, each with a horror story of its own.

    But I went to see the psychiatrist anyway because I really wanted this rheumatologist doctor to help me with my spine.

    But this time, the psychiatrist told me that there was nothing psychologically wrong with me so she couldn't help me. She even gave me a refund for the full hour session! Of course when I went back the the rheumatologist and told him that, he didn't believe me!

    Why doesn't anybody believe us that we're in horrible pain? Not all of us can be making it up just get drugs off the doctors. Why do so many doctors think that?

    A couple of months before that encounter, I went to a pain management clinic, and there they gave me a paper with a drawing of the front and back of a body and told me to circle wherever I was feeling the most pain. Well, as you would guess, I had circles all over everywhere on the front and back body pictures!

    Then they asked me to tell them where it hurt the most - and I went prepared with a list of all my ailments - they were only my worst 11 symptoms. They said, "Wait wait. Just tell us your top 3 worst pains." So I tried to limit my complaints to three, but it was very difficult as you well know.

    They then told me to stand up and try some arm movement exercises, I was exhausted, but I did it. But then I nearly passed out right there in the doctor's office! So they sat me down and left the room. When they came back, I was told that they could not help me. I protested and said I thought they we a pain clinic and I'm in a crazy amount of pain! The nurse told me about her Fibromyalgia and how she can work through it my sheer force of will and prayer and that I should try prayer because only God can help me with my kind of pain!

    I am dead serious. This really happened!

    (continued...)

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  22. (...continued)

    I don't think even the staunchest atheist wouldn't start praying with this disease! And I'm not an atheist, so you better believe I was praying full on my knees and begging and crying and asking God why why why all the pain?

    I even begged them to help me please. But they told me I had better leave their office now - like they were going to call security on me or something!?!

    So again, "What is wrong with these people?"

    Another totally illogical and ignorant thing for a person working in the medical field to say is, "We don't have Lyme in this area, so therefor you don't have Lyme." What? I don't think the ticks got the memo. When they hitch a ride on a person or pet who then gets on an airplane to fly anywhere in the US or the world, they don't jump off before the plane crosses state lines!

    And now, "What is wring with these people?":

    The CDC still has on their website:

    "Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months."

    10 to 20 percent? Do these people even read the internet???

    And:

    "If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."

    Of all the condescending statements I have read and heard from doctors, this one gets to me the most. Particularly, "This does not mean your doctor is dismissing your symptoms..."

    God, every time I read that...!

    Oh, and I almost forgot. On that very same page is this stellar advice:

    "Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need."

    Yeah. My horrible aching body feels much better after "talking about my feelings". Thanks for that.

    I tell you, I would LOVE to share my feelings with whoever wrote that sentence!

    (continued...)

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  23. (...continued)

    These are all very specific gripes, but the overall problem I have with "these people" is that nobody seems to acknowledge that after a long or short course of antibiotics, way more than 20% of people are not only still unwell, but totally and completely disabled! We are in more pain tan they could ever even imagine for YEARS and DECADES - not 6 months!?! How could they not know that?

    I must acknowledge that there has been great amount of research on Lyme especially after all the Lyme awareness campaigns and the movie, "Under Our Skin". But here we are, still at ground zero.

    The latest big news coming from the CDC is that it is safe to attach a "Lyme-free" tick to someone and then analyze the tick to see if it became infected by the person it was attached to. First of all, I don't know who in the world they got to volunteer for this, but I'll bet you nobody at the CDC volunteered!

    If they can't even tell us for certain whether we have Lyme or not through a battery of blood tests and PCRs, how in heck are they going to be able to find it in a tick? And why not just take a blood sample directly from the person and analyze it to see if there are any spirochetes??? You could get a much larger sample of their blood that way.

    I have seen this utterly ridiculous study published all over and over the internet. How much of our tax dollars were spent on this?

    Finally, The AMA (American Medical Association). This learned group not only supports inadequate treatment for Lyme, but also prosecutes and penalizes those brave doctors who dare to help us; we, the totally ignored and incredibly ill. My doctor was recently charged and found guilty for treating Lyme with long-term antibiotics. Granted, log-term antibiotic treatment is not yet proven successful, but it hasn't been unproven yet either.

    My caring doctor was fined $50,00 and forced to change his clinic name to omit the word "Lyme". Thankfully, he is not going to let it rest there. He is teaming up with other persecuted doctors to fight back.

    The CDC itself tells patients to tell their doctors about their pain to get help for it - and then turns around and ties the doctors' hands? We can tell them about our pain, but they're not allowed to give us proper pain treatment or any more help for a possible active Lyme infection???

    So, yet again, "What is wrong with these people?"

    Sorry this is so long, but you opened a deep wound in me and it feels really great to get all this out - especially to a person that I know has a fair and balanced and calm view of this whole drama - and at the same time you understand my pain completely.

    Thank you Camp Other for being Camp Other.

    You are doing the Early/Late Stage/Chronic/Post-treatment/ Lyme community a great service!

    And thanks for listening to me. I am so isolated and alone because of this disease. Some people in my life have turned out to be much nastier than I ever would have thought possible. Sympathy for sick people understandably turns to contempt after a long long time of the patient not getting better. Not to mention all the hopelessness that the sick person feels!

    Please give another thought to trying out Jasmine Auriculatum. It is really and truly helping me in profound ways. It's not an overnight cure, but it does seem to be an ever increasing health booster - specifically for those of us with neurological and central nervous system issues. And they are turning out to permanent improvements!

    -velvetmagnetta

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  24. velvetmagnetta,

    Posted all your comments here to share, and have read them. It will take a lot of time for me to respond to them - some more than others. Know that I hear (and to a large degree share) your frustration and even share frustration over a number of these issues.

    Give me a day or two to work up a thorough response, because this is a lot to address and I need more rest before I can tackle it.

    Hang in there,

    CO

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  25. velvetmagnetta,

    I'm going to respond to your comments in a piecemeal fashion and it may take a while.

    "This makes me think that it is not just the live bacteria that causes all the various neurological symptoms. Something about killing them all at once drastically increased my nerve problems. And I never really got over that part for years! Also, I never experienced the intense and unbelievable pain until I killed them off."

    Lyme disease pathology is not fully understood. But it is known that killing off a large number of spirochetes in a short period of time leads to a Herxheimer reaction, and also that a person's immune system can have a response to the presence of infection which is inflammatory and also leads to altered immune expression/pathways in the central nervous system. The brain can be directly or indirectly affected by the presence of Lyme disease and its antigens, its lipoproteins. Past this, the nerves can be affected.

    "The theory that all the pain is due to inflammation is also suspect because I could take tons of Advil and get only a little relief from it. [...] Then, my doctor put me on Neurontin (Gabapentin) which is specifically for nerves, and that helped quite a bit but I would still get in crying, moainng, [sic] rolling-around-on-the-floor pain that the gabapentin didn't even touch."

    I'm sorry to say you are not alone in this experience. Numerous patients have reported that conventional over the counter pain medication does not affect the pain they experience with Lyme disease, and opiates/benzodiazipines may offer only some to little relief for many patients. Some people do report improvement with aspirin rather than NSAIDS, and some get more muscle pain and abdominal pain relief from, say, Ativan/lorazepam that NSAIDS won't touch.

    The sequence of events which could occur with abdominal pain related to Lyme disease is that nerve damage or infection's effect on the vagus nerve can trigger gastroparesis also known as slowed digestive motility. Ativan/lorazepam affects smooth muscle (such as intestinal wall) and can calm digestive-related abdominal pain regardless of the state of the nerves which triggered it.

    NSAIDS work by reducing the production of prostaglandins. NSAIDS inhibit COX enzymes - COX-1 and COX-2 - which trigger the production of prostaglandins (chemicals which cause inflammation). But this sequence of events in the inflammatory sequence may not be relevant if the primary source of pain is coming from nerves. (See: http://pain.about.com/od/treatment/a/treating_nerve_pain.htm for a primer on medications used to treat nerve pain.)

    To some degree, how one responds to pain medication is individual, but anecdotally and through observing numerous patient exchanges online and in patient support groups, your experience is not unique.

    More people do seem to respond positively to gabapentin for nerve pain. A number of patients who have contracted Lyme disease do develop nerve pain and nerve damage, so trying one of the drugs with a doctor's support on the listed primer above might help. Sometimes, a combination of two drugs will work better than one alone (being mindful, of course, of the dosage and other preexisting conditions and medications one may already be taking).
    On the other hand, alternative medicine might also help - and there's some evidence to back the use of osteopathic manipulation, trigger point release therapy, and TENS units.

    For a pretty good overview of the treatment of neuropathic pain, check out this paper: http://www.jaoa.org/content/105/suppl_4/S12.full may get a bit dense with jargon, but much of it is also in plain English and covers multiple topics related to neuropathic pain.

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  26. velvetmagnetta,

    This article in Wikipedia also provides a good overview of neuropathic pain, and has updated info on new, experimental pain treatments: http://en.wikipedia.org/wiki/Neuropathic_pain (with it being Wikipedia, as always check the references section for citations to back statements made in the content).

    "I know from reading your blog all these years that you do an impressive amount of research on the subjects you cover (and, I might add, rather unbiased). But, make sure you do not suffer from "paralysis by analysis"! At some point you may have to dive in and try it for yourself."

    LOL. Oh, I have tried things - lots of things. Don't get me wrong. But I have refrained from blogging about them because I have made an effort to focus more on science related to Lyme disease and discussion of the Lyme disease controversy. (Past that, it's me swearing about my personal situation. But I can only do so much of that before it becomes counterproductive - so I try not to do that often.)

    Because different people report different levels of success with different treatments, I've also refrained from sharing my attempts at treatment here. I really wish I could reliably find one new treatment which is scientifically validated to work and discuss that here (since science is a focus of this blog), but thus far, because no one is doing new treatment research on ANYTHING for chronic Lyme disease, I have nothing to post in this category.

    In the meantime, I have sympathy for everyone going through this experience with chronic Lyme/post treatment Lyme/persisting symptoms who is trying to find the best treatment for them that even helps with just a little improvement. I say this coming from the 5% school: If I can find a method of treatment which is relatively safe and reliable and improves my symptoms 5%, I'll try it. That's 5% I otherwise wouldn't have had. And if I find another treatment that improves things by 5% and try that, then I have 10% improvement. My thoughts are that every bit counts because it improves quality of life.

    My individual threshold for risk taking may not be the same as yours or anyone else's, and my list of sensitivities and preexisting conditions (I have them, unlike you and others) will impact greatly what I decide to try for treatment and what I do not.

    I guess to make a long story short, I've decided not to discuss my treatment here much other than to say I've taken long term antibiotics in the past as well as Mepron, and they did contribute to my improvement (Mepron the most, hands down) but because I focus on science more, see that everyone responds differently to different treatment, and think there is more than enough blogs out there which already focus on different treatment approaches both using conventional antibiotics (and not - such as herbs), that I decided not to go there.

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  27. velvetmagnetta wrote:

    "After 5 years on antibiotics and these symptoms not improving, I decided to stop antibiotic treatment. I just don't think a person is supposed to be in that much pain. I don't care who says, "Oh, it the Herxheimer effect and it will get better. It just means your body is healing." Well, I call B.S.!!!"

    And that's a decision you get to make. You're in charge of your own treatment, along with any medical professional you consult. If treatment is, in your opinion, not working - then you have every right to stop it, go back to baseline and see how you do without it, and regroup. Think about what angle you want to use to approach treatment and who is best qualified to evaluate your condition based on that angle.

    Unfortunately, no one is an absolute expert on everything - including your medical condition. You can find some doctors and medical professionals who can help with some symptoms and conditions and not others. And once you've entered an area of medical controversy in how best to treat, unfortunately, there is less guidance out there on "the best way". You have to do the long hard slog of self-educating, even through brain fog and pain, and make decisions for yourself.

    I think this approach to one's health care is beginning to become part of ANY patient's approach, and not just those with controversial conditions such as Chronic Lyme disease, CFS/ME, or fibromyalgia (which is slowly becoming less controversial in some practices). Since medical practices are moving away from authoritarian doctor-patient relationships and more towards partnerships, and more doctors are pressed for time and expecting patients to come into their offices with their top 3 complaints and prepared that many will have searched symptoms on the internet, the arrangement is changing. Self-advocating for getting certain tests, trying certain meds, and asking for certain care is becoming more common overall. (It is tricky, though, because some patients think they DO know it all but they don't, and a doctor who has years of experience treating a particular condition knows more.)

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  28. velvetmagnetta wrote:

    "So, this is the place where I am coming from when I ask, "What is wrong with these people?"

    I can't easily answer for other people. I can speculate about other people, though, and I may or may not be correct.

    Some people report that longer courses of treatment help them and that when they stop treatment, their symptoms return and they get worse. Some people report that being on antibiotics makes them functional, and when they stop, they become so dysfunctional that they are practically useless.

    For the first 2-3 years post-contraction of Lyme disease, this is EXACTLY where I was. Every time I tried to stop, I would get worse. So I'd go back on antibiotics, reluctantly, and then wondered why I ever stopped.

    Towards the end of that 3 year window, I ended up having to go off antibiotics entirely. (Long story, setting aside for now). I found out I could be off antibiotics for a long block of time and be on a rollercoaster - I would get worse, then I'd have a block of time where I'd get better, then I'd get worse again.

    There was (and continues to be) no stability in my condition, I'm on this ride right now. The duration of the intensity of pain has improved - I'm still in pain, but my severe pain in certain parts of my body comes and goes and is not always constant now that more time has passed. I am still, however, pretty dysfunctional, and not able to work.

    "What is wrong with these people?" as you ask it, seems to come from a place based on your experience that you experienced more pain and not more relief from longer term antibiotic treatment, so you seem puzzled that anyone else would continue treatment based on your experience. But that's the thing: Different people report different effects of treatment, and not everyone is the same.

    Some people may be on Plaquenil as part of their antimicrobial treatment plan. Plaquenil is also used to treat autoimmune disorders. For a given individual who finds relief using it long term, as an independent observer, I have no way of knowing whether or not Plaquenil is addressing an infection, addressing an autoimmune disorder, or addressing both when it's given to someone else. I simply don't know, and have no objective data to draw from, so I take it at face value if they say longer term treatment is helping them.

    What else can I do, other than take their statement at face value? It's not within my domain of expertise to tell them what they're doing is right or wrong. I can't make a judgment call. I can only say, "hey, this is what the science says so far, evidence-wise" and advise that they continue to consult a medical professional for their treatment and honestly reevaluate their progress to decide whether or not their current treatment is working for them. And I wish them well - as I wish anyone well - and as I wish you well with your jasmine extract consumption.

    In the meantime, I promote the idea of doing research on anything that really seems plausible and effective (and hopefully low risk) in treating symptoms and/or hypothesized causes for persisting symptoms.

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  29. velvetmagnetta,

    To add here: I am hoping that someone like Dr. Kim Lewis will determine once and for all if there are persister cells involved in spirochetal infections, and if so, develop shorter term effective antibiotic treatments for all patients so that they can avoid more suffering, get better sooner, and also stop being criticized for contributing to antibiotic resistance. All of those are important, and with solid evidence persister cells are involved in infection and a treatment to deal with them, it would change the playing field a great deal.

    I don't think any patient wants to be on long antibiotics and no one I have talked to absolutely loves them. Many people put up with them in hopes of getting better, and have gratitude they're making them functional. But I think in a heartbeat anyone I know would be relieved to take a shorter course if it truly prevented chronic Lyme disease or cured it.

    At the moment, there really aren't any evidence-based alternatives to treatment. We know antibiotics work, particularly in acute stage Lyme disease. They help with later stages too. But at present what we have there is an imperfect solution and it does not work for everyone or it does help to some degree but some patients plateau after a while.

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  30. velvetmagnetta wrote:

    "[...] I couldn't believe it! It seemed to fit my predicament exactly. It would explain why more and more antibiotics weren't doing anything good for me - you can't kill what's already dead! [...] Well, not everyone was as excited as I was."

    Nods. I'm not surprised not everyone was as excited as you were. Why? 2 reasons... no, make it 3:

    1) Because not everyone shares your experience in the Lyme patient community. Some people report improvement of their symptoms with longer term antibiotics, and based on their experience, conclude that they have a chronic infection which responds to antibiotics. They can't relate to your experience of having more and more pain with antibiotic use and feeling better slowly once you stopped, on two counts: Either they stopped and felt much worse, and were more dysfunctional without antibiotics - or they NEVER stopped, and don't actually know how they'd feel without them.

    2) There has been some counterargument out there to Dr. Linda Bockenstedt's research from Dr. Alan MacDonald. I do not know who else also made same counterargument - if someone like, say, Dr. Stephen Barthold has any comment on the viability of the spirochetes found in Bockenstedt's study or not. But the basic argument from MacDonald is that Bockenstedt made a defacto assumption that the spirochetes were only debris and dead, and that with the use of BacLight and other methods, Bockenstedt should have done additional confirmatory steps to see if there were any living spirochetes in her samples. Refer to this hot mess of a forum thread for more info: http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=4401

    This is, of course, yet another example of where the Lyme disease controversy gets stirred up, and outside observers not working in the fields of microbiology/pathology/immunology have to struggle to keep up and separate truth from fiction. How many people can make that determination? How many people are educated and experienced enough to know what the right questions are to ask here? And for patients, their question is: "Will I be able to continue using the treatment I'm currently using if it works for me, regardless of the outcome of this debate?"

    3) The 3rd and most difficult reason you may have received the cool reception you did is because some people are not open to the possibility that at least some patients may have developed an autoimmune condition due to Lyme disease. It's sad, because this situation may very well apply to you even if it doesn't apply to them - and if this finding gives you the answer you need, and validation and relief that someone is addressing your condition - I'd think others would be happy for you.

    But there are people in this group who will tell you what they think you have, and that you can't possibly have an autoimmune condition, and what you really have is a chronic infection with Borrelia burgdorferi. That you are sadly misinformed. That you MUST be on more antibiotics.

    My response to that is, well, crap, I don't know what you have one way or the other without any objective data. I don't know if you have any coinfections. I don't know if it's something not tickborne-disease related. I leave what decision you make about treatment up to you and the medical professionals treating you. You may even have an LLMD who is telling you more antibiotics are not the way to go in your situation. It's not my place (or anyone else's, really) to diagnose you and tell you what to take for treatment. I can speculate (and I do) but in the end, refer you and everyone else back to their doctors.

    ReplyDelete
  31. velvetmagnetta wrote:

    "I wanted to point out that our continuing pain may not, in fact, be from an active, ongoing infection. And if that is so, more antibiotics ain't gonna make a darn bit of difference and we need a drastic change in our Lyme treatment paradigm."

    Here is where I think (possibly) a large portion of the bristling response came from:

    You said: "I wanted to point out that our continuing pain may not, in fact, be from an active, ongoing infection."

    Had you said instead: "I wanted to point out that my continuing pain may not, in fact, be from an active, ongoing infection", the response may have been more accepting of your statement because it's about your experience and not about characterizing everyone else's.

    "And if that is so, more antibiotics ain't gonna make a darn bit of difference and we need a drastic change in our Lyme treatment paradigm."

    Again, it's the use of "we" here which possibly also led to others bristling. If anyone in your audience was having a positive response to antibiotics at the time you wrote this, they may have thought their approach to treatment was being judged or attacked at that time.

    Even if you yourself were correct about your assumptions about your own situation, they may not have thought it applied to them and it was a presumption on your part to make such statements about them.

    The other angle to this, of course, is that many patients have been engaged in advocacy and activism in securing access to longer term antibiotic treatment, and view any acceptance of chronic Lyme disease being associated with developing an autoimmune disorder and not treating with antibiotics as a challenge to their efforts, and flying directly in the face to that which they support (and some groups and organizations which have supported them as patients).

    "How does one rid one's body of dead bacteria? Dead bacteria that is causing crazy bad pain?"

    There, you have asked a very good question. Usually your own immune system takes care of dead bacteria. It gets broken down and removed. But for some reason, in some people, it may not be and continue to cause symptoms. Here's a problem more research could solve. Here's a situation which leads to more questions about human immune systems and what happens to them due to Lyme disease (and possibly coinfections).

    "Anyway, I got ripped a new one from those people. I was shocked at the response and realized then and there that the people fueling this Lyme controversy are not interested in science and don't even seem to be interested in getting better!"

    Are you sure they weren't interested in getting better, and that instead they genuinely thought what they were doing was helping them? It would make a difference in how they responded to you.

    (continued...)

    ReplyDelete


  32. I agree that more patients should be interested in science - some of them are, and they end up here, and we talk; some of them end up on fora. But mostly, what I see is this:

    1) Most of the research is not written in plain English like a Cochrane review plain English summary, and it's hard to follow even without brain fog, fatigue, and pain. Therefore, people don't follow it.

    That I even try to read it and follow it WITH brain fog, fatigue, and pain makes me either a masochist, an outlier, or both... but I like to think of it as an exercise in curiosity and also an attempt to try to get back the brain I had pre-Lyme.

    Anyway, a lot of people are too sick to read these papers and figure them out, so they have to rely on others' summaries of them and rely on others' reporting about them in order to begin to form any opinions about the Lyme disease controversy. This automatically puts many people at a disadvantage who are very sick (especially with cognitive and neurological symptoms), because it is harder to be in a position to form their own opinion.

    Firsthand experience: When I first was almost entirely bedridden with Lyme disease (I'm only partially bedridden now and leave the house for short periods), I could not think out of a paper bag. I had to trust others and get help, and get on antibiotics before the inflammation in my head could go down enough so that I could read and comprehend what I read and remember even the smallest amount of it. I was basically at others' mercy at that point, which was one of the hardest things I've had to do.

    2) People place trying different treatments and sharing them above focus on research papers, and with understandable reason: There are no new research papers about alternative methods of treatment and no new clinical trial reports on any new treatments. No one is testing anything new and evidence-based for treating chronic Lyme disease anywhere, with the exception of upcoming trials on VGV-L by VG Life Sciences (which I have not received any announcements on in several months as to when candidates can apply).

    So, based on this, most patients have no interest in the research that's out there. What they really want is a treatment that helps. Either one that cures - or if that's not happening, one that improves their symptoms. They're miserable. Addressing that misery comes first, before anything else. And if there is no research to turn to, they'll try to find a caring doctor who wants to help and talk to anyone else suffering the same fate to get ideas of what helps and doesn't help.

    3) Even if you are interested and reasonably smart, knowing where to start on the massive firehose of information concerning tickborne disease is a tall order. Does one look at immunology? Does one look at specifics of bacterial resistance and persistence? Does one branch out and look at interactions between coinfections and their impact on the immune system? There is a lot one can read and learn out there, and that's great - and it's great that the internet gives sick and disabled people greater access to info than ever. At the same time: How do you, the reader, determine what is relevant and what is not in forming your hypothesis of what Lyme disease (and potentially coinfections) did to you?


    "That is why I say, "What is wrong with these people?" Because what in holy heck is wrong with these people???

    I think I gave it a pretty good shot at answering the first two rounds of "What is wrong with these people?". What do you think? Agree or disagree to the points I've made thus far?

    (I'm going to stop for now and take a break, and get back to the rest of your comments later.)

    ReplyDelete
  33. Hi velvetmagnetta,

    I'm back to respond to some more of your comments. Don't know if you've been following along so far or not, not having received responses from you to the comments I've made so far - but feel free to jump in when you get a chance.

    I continue my response below:

    velvetmagnetta wrote:

    ""What is Wrong With these People?" Part 2:

    Now for the other side of the equally illogical argument. Every doctor I've been to (except for 2 excellent and caring LLMDs and 1 awesome LL Nurse Practitioner) throughout my 30 years of becoming sicker and sicker has either told me there is nothing wrong with me (even though I was young and exhausted and had pain all over my body) or said it was all in my heard and sent me to a psychiatrist or even simply dismissed me altogether.


    If you're sick, there's something wrong. It's that simple. I think it's a cop-out for doctors to say there is nothing wrong with you when you're in pain and dysfunctional. Their tests may not lead to a source of objective data for that which ails you - but that doesn't mean something isn't wrong. It means that the tests did nothing to help determine your diagnosis.

    The human body is complicated, and it's not even fully human. We are colonies of human cells and bacteria and fungi, living together in our own walking, talking ecosystems. It's surprising, in a way, that medical professionals can diagnose and treat people as well as they do given this complexity... but look at where we were over 100 years ago, in how doctors treated patients and what we knew about health and healthcare - we've come a long way.

    That said, it seems too hard for a number of doctors to say the three words, "I don't know". Or to fall back on diagnosing a patient with a psychological/psychiatric condition without expertise in that area and without looking deeper for a medically treatable condition that could be causing pain and fatigue.


    Most recently, I told a doctor about my terribly aching spine and how I could not seem to stand up straight. He told me (and this really happened) that I should have better posture!

    Wow. Thanks, Doc. Wait. Isn't that what I just said I COULDN'T do?"


    That's the point at which you fire your doctor and/or ask for a referral to someone else so they can examine your spine more closely and start with at least some very basic tests, like blood tests and an x-ray. But this doctor you're talking about could have easily ordered a few blood tests and an x-ray of your spine to determine if something was wrong without having to refer you on to a more expensive specialist.

    Did the doctor do any tests at all?

    "But I went to see the psychiatrist anyway because I really wanted this rheumatologist doctor to help me with my spine.

    But this time, the psychiatrist told me that there was nothing psychologically wrong with me so she couldn't help me. She even gave me a refund for the full hour session! Of course when I went back the the rheumatologist and told him that, he didn't believe me!"


    I'd fire that rheumatologist and hire another one.

    Unfortunately, I have heard similar stories for some time, and unfortunately, there does seem to be some argument which is finally getting raised that a number of these stories are based on doctors who practice paternalism, and who treat female patients differently from male patients - in particular, by labeling them with a psychiatric condition when their condition has been medical all along. A good book about this kind of situation is "It's All in Your Head" by Maria McCutchen: http://www.amazon.com/dp/1613460716/ref=cm_sw_r_tw_dp_ydUttb17EM1KP5F8 She had a brain cyst that was causing her symptoms, but for the longest time, doctors would tell her it was something else - including hypochondria.

    (continued...)

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  34. Whether you are male or female, to get misdiagnosed with a psychiatric condition and/or treated for the wrong condition when you could improve or be cured with the correct diagnosis and proper treatment is an awful experience. It shouldn't happen. Yet it does.

    What can be done to reduce or eliminate these misdiagnoses? What can be done to give more respect to patients, and trust in their word that when they say their pain and suffering is real - it is - and it's not all due to some psychological issue?

    velvetmagnetta wrote:

    "Why doesn't anybody believe us that we're in horrible pain? Not all of us can be making it up just get drugs off the doctors. Why do so many doctors think that?

    I think you meant to say "I" here, though I do agree that a number of patients have reported that they've seen doctors who shrugged off their pain and gave them psychiatric diagnoses or told them they could not find anything wrong with them. There are a number of doctors who do believe that their patients are in pain, and prescribe pain medication for them - they just might not be the first doctor one sees or even the second.

    The medical world in general is hoping for and needing more pain research. The way things are now, there has been a crackdown on giving out pain medication in ERs - patients get pain treatment during their visit, and perhaps a single short-term prescription with no refills - when they used to get access to more pain medication. Things changed here and a number of doctors are now trying to avoid giving their patients prescription pain medication as much as possible, referring them to over the counter medication and physical therapy as well as lifestyle changes to address pain. They're concerned about addiction, but even more so, they're concerned about overdoses because it has been a rampant problem which has gotten worse each year.

    But you're in pain. What can you do? That needs to be addressed here and now, not after more research comes out. A good pain specialist could help, but it may not help everything. At some point, life becomes living with pain and trying to take the edge off it because nothing works to eliminate it completely.

    I think doctors are likely scared. They want to help, on one hand, but on the other, they don't want patients addicted to drugs or to take too many pills because the pain is still there. And on yet another hand, they're acting out of self-preservation: They don't want to be known as "Dr. Pain" and be the person who's hauled into court over writing up too many pain prescriptions.

    It's a truly shitty situation. Something has to be done about it. I hope transcranial magnetic stimulation and new forms of pain management come about that can help without the risk of addiction or overdose. But these treatments are in their infancy and I don't know how soon we'll see them.

    ReplyDelete
  35. velvetmagnetta wrote:

    "A couple of months before that encounter, I went to a pain management clinic, and there they gave me a paper with a drawing of the front and back of a body and told me to circle wherever I was feeling the most pain. Well, as you would guess, I had circles all over everywhere on the front and back body pictures!

    Then they asked me to tell them where it hurt the most - and I went prepared with a list of all my ailments - they were only my worst 11 symptoms. They said, "Wait wait. Just tell us your top 3 worst pains." So I tried to limit my complaints to three, but it was very difficult as you well know.

    They then told me to stand up and try some arm movement exercises, I was exhausted, but I did it. But then I nearly passed out right there in the doctor's office! So they sat me down and left the room. When they came back, I was told that they could not help me. I protested and said I thought they we a pain clinic and I'm in a crazy amount of pain! The nurse told me about her Fibromyalgia and how she can work through it my sheer force of will and prayer and that I should try prayer because only God can help me with my kind of pain!"


    Wrong pain clinic. Wrong nurse.

    Unfortunately, in this sort of situation and with a chronic illness which involves all-over body pain and fatigue (whichever illness it is, whether it is tickborne related persisting symptoms or CFS/ME or fibromyalgia) people end up falling between the cracks because no one approach to treating them is standardized. While there may be some piecemeal advice out there as to how to treat symptoms for each of these conditions separately, there is no clear and evidence-based set of guidelines for them all which all practitioners are applying.

    Unfortunately, we have both been on the receiving end of being in this situation. And at times, I will see a specialist for something if new symptoms crop up or treatment for tickborne diseases plateaued just to see if I have anything new going on. And that specialist will at least try to help (usually), may give me pain medication, and run tests. And this is good to do periodically, because perhaps something treatable will come up and it isn't too difficult to manage.

    To a large degree, if you find you've fallen inbetween the cracks as a patient, you need to make a rope and grappling hook and pull yourself out. The way modern medicine works right now, patients are doing more of the work and having to do research to find a doctor who can help them and is willing to treat patients outside the box. Otherwise, you can see different specialists to approach your condition from different angles, and see if what any of those specialists have to offer does any good. (In the former situation, you'll have to do more legwork and pay out of pocket unless you're really lucky; in the latter situation, you'll be more likely to have insurance cover it and have to give the doctor some more weight in deciding which tests to run based on that.)

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  36. velvetmagnetta wrote:

    "Another totally illogical and ignorant thing for a person working in the medical field to say is, "We don't have Lyme in this area, so therefor you don't have Lyme." What? I don't think the ticks got the memo. When they hitch a ride on a person or pet who then gets on an airplane to fly anywhere in the US or the world, they don't jump off before the plane crosses state lines!"

    Nods. People travel. Pets travel. Birds with ticks on their backs fly from one state to another, from one country to another...

    You're right - I agree. Doctors should consider that patients may have contracted a tickborne illness based on their symptoms and history, and I think as time goes on, they are going to be forced to do so for more vector-based diseases because some infectious diseases which were eliminated from an area are creeping back, and others are expanding their range due to climate change and other factors.

    A doctor may have patient 0 on their hands someday, and they will also need to help determine if they are seeing a new disease in a patient for the first time. I applaud the doctor who figured out those guys in the midwest had Heartland virus, that it was a tickborne virus. Now doctors there should be on the lookout for additional cases. In the future, doctors across the country may need to look out for Heartland virus as well.

    The unfortunate side of all of this for doctors is that they will have to know so much more, and they're already burdened by how much they need to learn. I'm certain that in a not-so-distant future, doctors themselves will be relying on computers more to try to help diagnose the patients in front of them. Doctors can't hold all of the possibilities in their heads - they can do the best they can do based on case definitions, evidence, experience, and observation.

    ReplyDelete
  37. velvetmagnetta wrote:

    "The CDC still has on their website:

    "Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months."

    10 to 20 percent? Do these people even read the internet???"


    I've been eyeing that 10-20% figure for a while now, and honestly, I want to know how it was determined. Which studies support this figure and how many studies were there and how long ago were they conducted?

    With an annual 300,000 cases of Lyme disease in the US, I have been thinking that percentage needs to be revisited. Is it still 10-20%? Is it more? I don't know, and until someone does more intensive research, no one does.

    That said, I would not rely on looking at who's posting on the internet about having persisting symptoms related to Lyme disease for determining how many people are affected or have been in the past. If anything, using the number of people posting about persisting symptoms online - particularly on fora - would be low balling it. This is because while the major Lyme disease fora have a high number of members, only a small fraction ever post at any given time and it is unknown (except to those who access stat reports) how many members lurk and do not post. This is also because the most severely affected are not online, and are bedridden. One also can't know how many people have gotten better when they stop posting - or if they declined and got worse.

    So a different way has to be found to get closer to a more accurate estimate of how many people have persisting symptoms. If a chronic Lyme disease survey has 3,000-4,000 respondents, with 10-20% of patients experiencing persisting symptoms, that's only a small fraction of patients who have ever contracted Lyme disease and went on to experience persisting symptoms when there are 300,000 cases a year and 10% of that would be 30,000 right there.

    ReplyDelete
  38. velvetmagnetta wrote:

    "And:

    "If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."

    Of all the condescending statements I have read and heard from doctors, this one gets to me the most. Particularly, "This does not mean your doctor is dismissing your symptoms...""


    Nods. Related to what I said above, though - nobody has one method or approach to treat all these conditions. No one can even agree what is causing them, including chronic Lyme disease. A good doctor will try to help their patients, even if they aren't entirely sure how.

    The problem with the above passage isn't so much that doctors will try to treat you as if you have CFS/ME or fibromyalgia. Some patients with chronic Lyme disease already receive some of the same treatments doctors use to treat CFS/ME or fibromyalgia, and some patients experience some relief or improvement from these treatments - and some don't. So I'm not going to knock a doctor and a patient for agreeing to try some of these treatments. Some people report improvement from them - great.

    The bigger problem here, of course, is that there hasn't been additional research on approaches which may help such as combination antibiotic treatment or use of different drugs from which patients could find some relief. And the bigger problem also is that that phrase "This does not mean your doctor is dismissing your symptoms..." is pretty condescending in light of the fact that so many patients have reported experiencing being dismissed for their symptoms or told it's all in their head. That's a genuine problem, and one doctors seriously need to address and change.

    ReplyDelete
  39. velvetmagnetta wrote:

    "Oh, and I almost forgot. On that very same page is this stellar advice:

    "Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need."

    Yeah. My horrible aching body feels much better after "talking about my feelings". Thanks for that.

    I tell you, I would LOVE to share my feelings with whoever wrote that sentence!"


    LOL. I get it.

    It is incredibly frustrating that this kind of advice is even given. Anyone with a chronic illness or with chronic pain will eventually want or need to talk to someone about the experience - whether it's a relative, partner, friend, or a therapist. But it isn't really the most helpful tool in addressing the immediate need: To reduce or stop pain, and to reduce or stop grinding fatigue.

    What patients need the most isn't someone to listen to them complain (although there are times when I appreciate having someone to vent to) - what patients need the most is effective treatment, and a number of other solid supports that will improve their quality of life - starting with a doctor who supports them and believes them when they discuss their symptoms, having the medical mainstream acknowledge their condition is real even if the cause isn't fully understood (and not instantly earmarked as being in one's head), having employment disability insurance/state/national disability programs consider the serious nature of their condition in assisting patients and reviewing their cases, having infrastructure in place at schools/workplaces/stores/homes which helps accommodate patients who are in pain and have serious fatigue by doing something as simple as putting a few more benches at regular intervals and allowing flexible schedules/requirements to be fulfilled.

    There is so much which could be done better that isn't being done right now. And yet some of these improvements don't seem so incredibly difficult to implement. At baseline it's about acknowledging people are moderately to severely affected by persisting symptoms of Lyme disease, and don't just have "the aches and pains of daily living".

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  40. (velvetmagnetta)

    Ah, Camp Other, thank you for responding! It is a genuine pleasure to speak with you. We both seem to have a lot to say, so, I just wanted to tell you that I am in the midst of reading your replies.

    ReplyDelete
  41. Please be patient with me...I'm still reading. Only recently am I able to communicate via internet due to foggy-brain - no, scratch that - smoggy-brain! I'm writing down my responses to you on my computer as I go. So, hang in there with me please. This is going to take a while. And I want to take my time with this. -velvetmagnetta

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  42. Hi Camp Other,

    I find that I have quite a bit to say in response to your replies and since this thread is getting rather cumbersome and kind of difficult for me to follow, I was wondering...if you can create new threads for each general topic we are discussing? I don't know how you even built such a wonderful website in your condition in the first place, but I commend you for it!

    I don't know if this is a tall order to ask of you, but I imagine that others in our condition may also find it difficult to follow and I would love to share our information and opinions with as many Lyme sufferers as possible. And also ask them to join in - if you're up to moderating the kind of mess that can turn into...

    One more thing (and I know this one IS a rather tall order) would you consider darkening your website's background just a bit? If there are others out there like me, they will have immense difficulty reading our long comments with the white background shining in their eyes. I don't know if you suffer from photosensitivity, but I assure you it is an intense problem that can result in migraines.

    I realize this is A LOT to ask, and I understand completely if you cannot or do not wish to comply because it would change the whole feel of the site. Also it's probably a real pain in the butt to do!

    Hopefully, splitting up this thread into subjects is not as difficult? (Gosh, am I really that needy?)

    -velvetmagnetta

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  43. Hi velvetmagnetta,

    Welcome back and thank you for taking the time to wade through my responses. It takes time to write them - which is why you'll notice I responded to a number of comments, took a break for a couple days, then came back to respond to more.

    Sometimes I can respond to everything in one day, sometimes it takes several days or even longer - it depends.

    In response to your last comment before my response here:

    "Hi Camp Other,

    I find that I have quite a bit to say in response to your replies and since this thread is getting rather cumbersome and kind of difficult for me to follow, I was wondering...if you can create new threads for each general topic we are discussing?"


    The comment system I am currently using is blogger's built-in comments module. Technically, one is supposed to be able to reply to individual comments here using it - there has been a reply button. But I've only ever gotten it to work once, and since then it hasn't worked so I have to write non-threaded regular comments.

    In order to have threaded comments, I'd have use a different module from outside the Blogger sphere. So I'd need to do research on non-Blogger comments modules which would work with Blogger's code, install that, and test it.

    The short answer to your question: I will look into it, but if installation looks too time and brain consuming, I may not be changing what I already have.


    " I don't know how you even built such a wonderful website in your condition in the first place, but I commend you for it!"


    Thanks. Time. Patience. Pain. And a lot time spent in bed with a laptop, not going anywhere and not doing anything else. Ironically, the year that I wrote the highest number of entries in the blog I was in the most pain for the longest time. This past year, I've been in the most fatigue and not in consistently severe pain - yet I wrote few entries.

    I can never predict how much I'm going to get accomplished at any time. But I can say that at times this blog has been one of the few things that kept me going, kept me slogging along while dealing with persisting symptoms.

    (continued)

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  44. "I don't know if this is a tall order to ask of you, but I imagine that others in our condition may also find it difficult to follow and I would love to share our information and opinions with as many Lyme sufferers as possible. And also ask them to join in - if you're up to moderating the kind of mess that can turn into..."

    People can always join in here. I've had comments where many people have responded to one post and to each other, but it hasn't happened in a while. If changing the comments module to a threaded one would encourage more people to comment, perhaps that is an additional reason to adopt a new comments module.

    "One more thing (and I know this one IS a rather tall order) would you consider darkening your website's background just a bit? If there are others out there like me, they will have immense difficulty reading our long comments with the white background shining in their eyes. I don't know if you suffer from photosensitivity, but I assure you it is an intense problem that can result in migraines."

    I have had photosensitivity, but my way of managing it is different. More often than not, I can't deal with bright fluorescent lights, so I try to stay out of stores at night and go to ones with natural light or dim lighting. Sometimes I avoid going out entirely. Outside of this, when I use my laptop, I use a tool called Flux which has different screen settings (including red on black for nighttime viewing) and also adjust my screen brightness manually during the day. Flux is for Mac, I don't know if there's a PC version, but you might be able to find a similar app/tool.

    I'm wary about changing the background because not only would it take a lot of work to get the graphics above to seamlessly fit into a new background - but also because I deliberately use white so that tables and charts can be more easily printed by those who wish to print them.

    "I realize this is A LOT to ask, and I understand completely if you cannot or do not wish to comply because it would change the whole feel of the site. Also it's probably a real pain in the butt to do!"

    I appreciate your feedback, and letting me know it's a problem for you. I want to be more accommodating without compromising what's here for most users, so perhaps what I can do for you is look for a module which will allow you, the viewer, to change the appearance for easier reading. Outside of this, though, I think odds are higher that energy-wise and brain-wise, I am more likely to see what I can do about changing the comments module so people can have threaded comments than it is for me to change the background.

    In the meantime, consider checking out Flux or other programs like it for your computer. The beauty of installing such an app is that you can use it to view all of your websites online more easily and not just mine. Let me know if you look into it and see what you find. If you are on a PC, you might want to google something like "screen dimming app or program Windows" (or Linux, if that applies instead).

    (continued)

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  45. "Hopefully, splitting up this thread into subjects is not as difficult? (Gosh, am I really that needy?)"

    First, I don't think you're needy - you're asking for accommodation as someone with a disability. And that's good. I'll see what I can do to accommodate you, though I cannot promise how quickly I can accommodate you by installing a threaded comment module and potentially a background color switch. And that's because my own spoons are limited, and I can only do so much at a given time.

    Secondly, knowing that we're both working with our own limitations, we can be patient knowing that's the situation and while change may come slowly, eventually it should be possible.

    In other words, it's all good. :) It just takes time.

    ReplyDelete
  46. That Flux app is awesome!!! Thank you! I have been dying with all the bright white backgrounds - trying to read Wikipedia kills me! Oh, I'm so happy. I have my computer always as dim as it will go and it just blares in my eyes. Now, I have Flux set at its darkest and it is actually (almost) pleasant. Thank you for this.

    When I tried the "reply" button, it didn't work for me either. huh.

    I don't need "threads" so much as separate subjects. I'm just getting all our topics jumbled in my head and like I said, I'm following along on TextEdit (now that I know you're a mac, too, I can say TextEdit and you know what I mean!) but I have those paragraphs numbered and I can't remember what I already said.

    And I have lots if opinion and a little information I want to share with you, but it is turning out to be pretty difficult.
    -velvetmagnetta

    ReplyDelete
  47. http://www.accessdata.fda.gov/scripts/cdrh/devicesatfda/index.cfm

    Enter "lyme" as a search term. There are 55 cleared tests.

    ReplyDelete
  48. (from velvetmagnetta)

    OK. Here goes!

    I’m responding to the Neuropathic Pain post first.

    Thank you for all the nerve pain information. I thought I had read all there was online about nerve pain already but I never saw the JAOA paper. It does look a bit heavy, but I’ll try to get through it.

    I’ve tried many of the drugs listed on the about . com website. Goodness, I’ve tried just about everything but am willing to try more...

    If you can get a doctor to prescribe them!

    I don’t know about the TENS, though. It sounds an awful lot like the “Rife” machine that, having formally studied physics, to me doesn’t seem to have any basis in science - or reality for that matter! This is not to say I haven’t tried it. I am that desperate - as are we all.

    I wonder if a hot shower wouldn’t give more relief. That will be my measure - does a pain therapy offer more relief than a nice hot shower or in your case, a nice hot bath.

    Massage would be great if it didn’t hurt so much.

    Osteopathy might help by, among other things, stimulating the blood vessels to flow. Sometimes I can barely walk to my bathroom (that’s located inside my room!), then, in the same day, I may trot up a flight of stairs, no problem.

    What manner of damage is intermittent like that? If the nerves are damaged, shouldn’t they be damaged all the time? I don’t understand this at all. Does this happen to you? I noticed that you said your symptoms do ebb and flow, but do they vary this much in the same day?

    ReplyDelete
  49. (from velvetmagnetta)

    “Treatments and the Question of Chronic Lyme”

    This reply is in response to the “treatments” comment (improvement by 5%):

    I’m with you on not posting any treatments - but not because different things work for different people - but because it seems that NOTHING is really working for ANYBODY.

    They say it makes them feel better for a little while and then they’re right back posting on the Lyme boards with a “relapse”.

    I put “relapse” in quotes because we cannot seem to scientifically validate whether Lyme is chronic or not. The relapse may not be due to an active infection at all, but instead it may be from damage the organism incurred on the body while it was alive. Or it could be from something else entirely, as yet undiscovered but definitely Lyme-related.

    But the Lyme community is so focused on PROVING there is an ongoing, active infection that scientists, researchers, and doctors are also focusing on proving/disproving active infection.

    When all along, what if it isn’t active? What if some other mechanism left over after treating the Lyme infection is responsible for our pain and disabilities?

    We’ll never know because everyone’s fixated on this chronic/not chronic thing. I think it is pretty obvious that many of us have pain way beyond short and long courses of antibiotics.

    I agree that if, in fact, the disease is still the body, hiding from antibiotics and our immune systems, then we do need to find that out.

    But I’ve always wondered if it’s hiding so well, then why would we feel any pain from it? It is hiding from the immune system, so the immune system shouldn’t be reacting to it.

    And yet here we are flaring up and feeling like total crap.

    There have been so many papers that have tried to prove ongoing infection, but for some reason there is always something profoundly scientifically suspect about the papers such as a missing control group or alleged contamination, unrepeatability, etc.

    People seem to think if a researcher takes some microscopic pictures of blobs located near spirochetes, that these MUST be blebs, L-, or cyst forms of Lyme. But that is just not necessarily so. Just because something LOOKS like that on camera doesn’t mean it is that and not some other bacteria or blob of something. There must be a DNA analysis done to see what it is, exactly.

    But unless you’ve gone to school for biology, there’s no way of knowing that, and it sure looks like it’s a form of Lyme.

    Conversely, Linda Bockenstedt pointed out amorphous blobs of Lyme and got all sorts of flak from the Lyme community for saying that is WAS Lyme. She knows the blobs are Lyme because she attached the Green Fluorescing Protein to its genes and the blobs were both green and fluorescing. Can’t really go wrong there!

    Plus, she then mixed some of these green slimes with mouse immune cells and got a cytokine reaction from them.

    (continued...)

    ReplyDelete
  50. (...continued)

    (from velvetmagnetta)

    Whether there is an ongoing infection is important to know, but either way, there is an additional reason for at least some of our pain. If we don’t get beyond “chronic” Lyme, we’re never going to find out what this long-term damage is and how to fix it!

    Different things don’t work for different people. Those people who say they’re better by using a combination of antibiotics and herbs inevitably come back to the Lyme boards and post about “relapse”. Nobody who has had Lyme for many many years has actually fixed it yet that I’ve seen.

    If you have any knowledge to the contrary, please let me know.

    But this is what is so exciting about the Jasmine. I know I sound just like everyone else who says oh, I ate some tree bark and ground hamster turds and here I am, healthy as a horse!!!

    (I do realize we originally got aspirin from tree bark!)

    I’ve seen the books that people write about how they’re all better now and jogging 20 miles a day and they have their picture on the back cover smiling with big white teeth, “I did it, so can you!”

    And it’s all complete bullsh_t because if you read on, you realize this person probably never even had Lyme in the first place or they had it for a very short period of time. And we all know that most people who catch it right away get better with a short course of antibiotics (not everybody, though).

    It just makes me so mad somebody telling me to drink ozonated water because that worked for them. Bull. It doesn’t work. And it doesn’t even work for them. They just really really hope it does, so they see an improvement. Or, if they have truly improved, it is most likely not due to some special water.

    The ‘placebo effect’ is a real and it is concrete and measurable. I have experienced it myself. Mindful of this placebo effect, I too have never written about a treatment before. This Jasmine is the first treatment in 5 years that has gone above and beyond that placebo effect.

    And yes, I really really want it to work so let me try to explain why this herbal treatment is real and not just a placebo:

    I don’t know if you’ve experienced the same thing and I’ve never read on the Lyme blogs about this particular symptom, but when I killed off the Lyme all at once, my body’s core temperature went all wacky. I would get really really hot and really really cold at the SAME EXACT TIME. It’s not exactly like a fever. It’s something else. The only people I have seen on the internet talk about this strange symptom are those suffering from scleroderma.

    (What a terrible disease that is!)

    Whenever I would take a shower, I would get goosebumps which is perfectly normal, except mine would happen very very slowly. I could feel them breaking out all over my body over about 30 seconds. And it was soooo painful!

    To this day, I don’t have any idea what caused this. But, this strange body temperature problem is one of the first things that Jasmine fixed. I am still experiencing some temperature weirdness, but it does not affect me to my very core like it used to. It has become bearable and is almost gone!

    Along with this crazy sensation, another one related to my skin has improved greatly, to the point of only happening now and then and when it does happen, it is nowhere near the intensity that it used to be. The sensation I’m talking about is the feeling of being poisoned all over my body, in my veins. The feeling is of something I must get out of my body - like I want to purge it out.

    This one is really hard to explain but man, it is horrible! If feels gross, disgusting. My skin would get overly sensitive like what people with fibromyalgia report. You couldn’t even touch my skin. Having to lay down on it was extremely uncomfortable.

    And my skin would get red and hot to the touch. Ugh! I hated this. This horrible symptom has improved immensely. On a really bad day, I still get this one but at a much lower intensity. I can feel that this one is almost gone as well.

    (continued...)

    ReplyDelete
  51. (…continued)

    (from velvetmagnetta)

    These strange temperature fluctuations make me think that whatever’s wrong is not a particular toxin, but instead, it is a nervous system malfunction.

    I don’t know why or how, but the jasmine is doing something that is fixing these things. Each time I have a flare-up, it gets less and less intense and painful - as if whatever caused these symptoms is being repaired and re-normalized.

    Another symptom that has improved dramatically is my multitude of intestinal issues. I have tried just about every diet out there: eliminating gluten, dairy, all carbs, all sugars…I eliminated so many things that I was just about eating air! And nothing made me feel any better or helped me digest the little food I did eat.

    I finally realized that it’s not WHAT I’m eating but THAT I’m eating. It was the very act of eating that was making me ill. SO, I had to go back to the drawing board yet again and try to figure out what was happening in my digestive system.

    One of my many doctors told me that over 60% of the nerves in the body control the digestive system. If my nerves are mis-firing, then that means over half of my damaged nerves are trying to digest my food.

    And, indeed, I found a spine map that showed where on the spine nerves responsible for the intestines are bundled in certain areas along the spine. Once place is just under the bottom of the rib cage. And sure enough, when I pressed on there, it relieved some of the pressure in my intestines - I could feel things move along after massaging this particular are of the spine.

    So, it isn’t the food I’m eating that’s causing all this discomfort, but instead, it is the nerves that control the intestinal peristalsis (contraction and relaxation of muscles along the intestinal tract).

    Digestion takes a huge amount of energy and releases a large amount of endorphins. But all of this activity depends heavily on the proper blood flow through the veins. Blood flow is also directed by nerves and I believe this is the situation that contributes the most to our extreme fatigue.

    (continued...)

    ReplyDelete
  52. (…continued)

    (from velvetmagnetta)

    Blood flow through the body and the sending of oxygen to the brain are affected by these malfunctioning nerves, I believe. I think where the nerves are messing up is the contraction/relaxation (on/off, inhibited/uninhibited) modes. The nerve gets a signal to contract, but stays contracted. Or maybe they stay in the relaxed mode causing numbness and tingling.

    Numbness, tingling, and fatigue I believe are all related to how the nerves speak to the veins to pass blood around the body. The movement of blood around the body feeds oxygen to the large muscle groups. If the are deprived of oxygen, they become fatigued, and the entire body feels this fatigue.

    The same may go for the cerebral spinal fluid that feeds oxygen to the brain. The difficulty Lyme patients have in getting the right amount of oxygen to the brain I think is the cause of the (in)famous “brain fog”.

    So, back to the jasmine:

    I feel this extreme fatigue mostly in my legs. It is particularly painful along the outside of my thighs and all the way down my legs (arms too). It feel like I’m trying to walk through syrup!

    I believe that this is caused by those major veins and arteries that control the large muscles of the legs not being able to deliver the oxygen those muscles need to work. It causes a burning sensation of I stand up for too long. I think it is the nerves that are not sending the correct information to the blood vessels.

    These same blood vessels are responsible for taking oxygen out of the air we breathe in through our lungs. When nerves send the wrong signals, the body cannot efficiently grab this oxygen and deliver it to wherever it’s needed - and this, I believe is what causes the Lyme “air-gasping”.


    Whew! There is so much more I want to tell you about but I’ll give us all a break here. (*everyone breathes a sigh of relief*)

    Also:

    Camp Other, I did not realize that you had additional conditions other than Lyme. I’m so sorry. I know that makes this journey all that much more difficult.

    ReplyDelete
  53. (from velvetmagnetta)

    This comment is on “mainstream medicine” and “treating symptoms”.

    Camp Other (CO) said:

    “I think this approach to one's health care is beginning to become part of ANY patient's approach, and not just those with controversial conditions such as Chronic Lyme disease, CFS/ME, or fibromyalgia…Since medical practices are moving away from authoritarian doctor-patient relationships and more towards partnerships” —

    Don’t I wish!

    Though I have not seen this personally (except with LLMDs), I’m happy that you have found this to be true. But, Fibromyalgia and CFS are becoming more accepted diagnoses. Unfortunately, now doctors think that these two syndromes are what we all have. Some of us may share similar symptoms with those suffering from FM and CFS, but we also have additional and/or completely different symptoms. But we’re all lumped into the now-accepted categories of FM and CFS.

    This is most unfortunate and possibly dangerous because FM and CFS are “syndromes” that are defined by a set of symptoms and not thought to be caused by an antigen. And so therefore there is no known cure and indeed no search for a cure!

    Plus, the treatments for FM and CFS are basically anti-depressants and Neurontin, neither of which helps all that much. And that’s where doctors stop. They don’t try to cure you or even try to alleviate symptoms that are outside of the normal list of FM and CFS symptoms!

    What if it isn’t FM or CFS? What if it’s not even Lyme disease anymore? If Post-Lyme is not FM nor CFS, then what is it? Has anyone in the mainstream medical community even thought about this?

    I know some people have, but the majority of researchers and those in the Lyme community are concentrating on proving/disproving chronicity. Although I agree this is an important area of research, it leaves us all out in the cold by not addressing what we all know really does persist after treatment…And that is: OUR SYMPTOMS!

    Whatever the cause, we all are still hurting. And badly because many of us can’t even work! What are we going to do then, as a nation, as this disease spreads (as all ignored diseases tend to do) and infects a majority portion of our population?

    Who will then be eligible for Social Security Disability if most of us end up disabled?

    CO:
    “It is tricky, though, because some patients think they DO know it all but they don't, and a doctor who has years of experience treating a particular condition knows more.”

    Excellent point!

    ReplyDelete
  54. (from velvetmagnetta)

    This comment is about whether staying on antibiotics is a productive treatment for Lyme/Post-Lyme:

    CO:
    “Some people report that longer courses of treatment help them and that when they stop treatment, their symptoms return and they get worse.”

    and:

    “For the first 2-3 years post-contraction of Lyme disease, this is EXACTLY where I was. Every time I tried to stop, I would get worse. So I'd go back on antibiotics, reluctantly, and then wondered why I ever stopped.”

    When you went back on antibiotics, how much better did you feel? And how functional were you while on the antibiotics? Functional enough for full-time work or even part-time work?

    And is being just functional a good enough reason to put all our eggs in the “persistence” basket?

    I am very curious about this because there doesn’t seem to be a good measurement of how much better people feel while on antibiotics. There is plenty about the Herxheimer misery, but no real way for me to understand how well people are feeling while on antibiotics.

    What also confuses me is: are the people who feel better while on antibiotics rather than off finished with their herx? Did they ever experience the herx while on antibiotics and are now passed that to the point of antibiotics actually making them feel better, i.e. no herx at all?

    I ask this because in my experience, I never got passed the Herx point. And I took antibiotics a lot longer than most people. Do we have different diseases? Or have I just had Lyme that much longer than others?

    So many Lyme sufferers report that they feel better while on antibiotics, but I need to gauge how much better. Is it better than a placebo? And if so, how much better?

    And:

    If it is better than a placebo and it turns out that Lyme does not persist after all, then what is it about antibiotics that is making people feel better?

    It could be the recently reported anti-inflammatory effects of some antibiotics, but is that all? If that is the case, then why doesn’t Advil or Tylenol make people feel better? Surely these are much better anti-inflammatories than any antibiotics are.

    (continued...)

    ReplyDelete
  55. (…continued)

    (from velvetmagnetta)

    CO:

    “There was (and continues to be) no stability in my condition, I'm on this ride right now. The duration of the intensity of pain has improved - I'm still in pain, but my severe pain in certain parts of my body comes and goes and is not always constant now that more time has passed.”

    The roller-coaster ride sounds like it happens while either on or off antibiotics. People on antibiotics credit them for their upswings in health, and then blame the herx caused by the antibiotics for the downswing.

    I mean, it’s as if antibiotics can’t lose!

    Why do people attribute the good parts with antibiotics and accept the bad parts as a herx? Doesn’t this same roller-coaster ride happen anyway with or without the antibiotics? Why have so much faith in them when we’re all still so sick?!?

    What if the experience of feeling a little better is due to simply time - the body finally getting around to fixing things? Fixing mechanisms we aren’t even considering such as our myelin sheathes or something similar but even smaller and more subtle and harder to detect?


    CO:

    “…you seem puzzled that anyone else would continue treatment based on your experience.”

    Yes, it is my point of view that I experienced pain while antibiotics - but almost everyone experiences what is (incorrectly, I believe) thought to be the “Herxheimer Effect” shortly after starting antibiotics. My experience coupled with many reports of herxing by others leads me to believe that this course of treatment is flawed.

    Who decided the “no pain no gain” slogan applies to Lyme Disease?

    I now think with Lyme, it is just the opposite. Pain causes an exaggerated stress response in Lyme/Post-Lyme patients. This response triggers a cascade of stress hormones to be released all over the body aggravating already raw and possibly exposed or severely damaged nerves.

    I’m ready to throw the whole “herx” idea out the window. The original Herxheimer Effect was a TEMPORARY worsening of symptoms observed in Syphilis patients. This effect is not supposed to last and last and last! I think by the fifth year of horrible, incredible, indescribable pain, I realized that our level of pain no longer even resembles the Herxheimer Effect!

    Yes, I am puzzled why people would continue to think ever-longer courses of antibiotics is what is making them feel better when they continue to experience bouts of pain and are still too foggy and disabled to work?

    ReplyDelete
  56. (from velvetmagnetta)

    Topic: To Persist or Not to Persist? The Work of Dr. Kim Lewis

    Unfortunately, Dr. Kim Lewis of Northeastern University has a vested interest in finding evidence to support persistence. In an interview of him that I read, he is almost positive that he will find persister cells and all there is left to do is find the right antibiotic or antibiotic combination that will stimulate the cells out of dormancy and then kill them.

    It has yet to be proven that these blebs and cysts are, in fact, forms of Lyme. If you know of a good research paper that proves this, please let me know. Otherwise, all I have seen are a bunch of impressive pictures and videos on YouTube that to any untrained eye would look like blebs and cysts - but , as I mentioned before, there always seems to be something terribly wrong in the science when you look just a little deeper such as the absence of a control group. How can one be sure of a result without a control???

    It baffles me that these privately funded researchers get the funds and go through all the trouble of setting up a really great experiment and then fail to follow basic scientific protocol! How do these researchers still have jobs?

    CO:

    “But I think in a heartbeat anyone I know would be relieved to take a shorter course if it truly prevented chronic Lyme disease or cured it.”

    But the longer courses of antibiotics aren’t truly preventing nor curing chronic Lyme disease either.

    And I’m not so sure about this. We have tried and tried and tried to prove persistence of Lyme liken Dr. Kim Lewis’ latent TB cells. It happens in TB, why not in Lyme, too?

    Well, I’ll tell you why not - because we haven’t been able to find it! We may not like it, but we may just have to face the fact that the antibiotics for Lyme really do kill off the disease. Although, I cannot fathom why we would not like it!

    I would much rather my spirochetes be dead so that they don’t have a chance to grow and reproduce and cause even more disease. Perhaps many people feel more validated if they’re symptoms are due to an active infection rather than some really terrible after-effect.

    I just wonder why the hard push towards persistence? Why not an equally hard push against persistence? Non-persistence wouldn’t make our continuing incredibly painful and debilitating symptoms any less real.

    ReplyDelete
  57. velvetmagnetta,

    Thanks for your well thought-out, extensive comments. It's going to take a while to respond to each of them, but know that I've read them (will likely re-read them) and will respond to them over time.

    CO

    ReplyDelete
  58. (from velvetmagnetta - herein known as vm)

    But Wait...There's more!

    I am still working on more responses to the rest of your comments. Hang in there, Camp!

    ReplyDelete
  59. (from vm)

    Oh goody! Another Lymnet Europe fight! This ought to be fun. Thank you for the link. I actually don’t think I’ve read that one yet.


    Re: 3 reasons I got reamed for sharing the Lyme-debris paper:

    CO:

    “ 3) The 3rd and most difficult reason you may have received the cool reception you did is because some people are not open to the possibility that at least some patients may have developed an autoimmune condition due to Lyme disease. It's sad, because this situation may very well apply to you even if it doesn't apply to them - and if this finding gives you the answer you need, and validation and relief that someone is addressing your condition - I'd think others would be happy for you.”

    About the 3rd reason: No, no, no! Exactly the opposite: I do not think I now have an auto-immune condition. Auto-immune would mean the body’s immune system is attacking its own body. And there are tests you can take to see if that is the case. Auto-immune diseases are devastating.

    Instead, I was AGREEING with the original poster on that website that Lyme is NOT an auto-immune disease.

    What Bockenstedt found was that the left-over debris from dead Lyme bacteria invoked an immune reaction in the mice. I mean, wow. The bacteria doesn’t even have to be ALIVE to induce an immune system reaction to it! This is not a case of auto-immunity but rather mundane (for lack of a batter word) immunity wherein the immune system is sending its killer cells out to kill some dangerous foreign material - but the killer cells find immune markers (killer cell target antigens) everywhere! And so they attack attack attack everywhere.

    They just start opening fire right into the crowd. It’s a drive-by immune reaction!!! (I think I’m going to write a song about that that!)

    This is how I imagine it:

    When the spirochetes were alive, the killer cells would kill them by eating them (phagocytosis). Inside the killer cell, the spirochete would then be dismantled and expelled from the body. Or perhaps there is cleaving involved, then eating - but either way the point is that waste management is an integral part of the immune system. Once you kill a virus or bacteria, you recycle or get rid of the remains.

    When we kill bacteria using antibiotics, the mechanism of murder is usually by cleaving or cutting the bacteria into smaller pieces, or perhaps depriving the bacteria of some essential nutrient, or some other means of destruction. But it stops right there. Antibiotics don’t clean up after themselves. They leave it to the body to get rid of the mess. And the body does clear out most of the dead bacteria most of the time.

    What Bockenstedt found was that the antibiotics did indeed kill all of the spirochetes they could see, but since they had attached a green fluorescing protein to the spirochetes, they could actually SEE fluorescent green smudged out all over the mouse ear cartilage.

    But what was more surprising than seeing that the bacterial remains hadn’t been cleaned up was that the remains actually elicited an immune reaction! The green smudges caused the body to release those painful cytokines responsible for inflammation.

    This is in no way an auto-immune situation. This study in fact supports the idea that the body is trying to kill something foreign, something that is not itself.

    So basically, what I’m saying is that both theories are wrong: chronic/post Lyme is neither an ongoing infection, nor is it auto-immune in nature.

    CO:
    “…instead they genuinely thought what they were doing [i.e. taking long-term antibiotics] was helping them?”

    If what they were doing was genuinely helping them, what were they doing on this website complaining of pain? They’re all still sick. They freely admit this.

    ReplyDelete
  60. (from vm)

    CO:

    “That I even try to read it and follow it WITH brain fog, fatigue, and pain makes me either a masochist, an outlier, or both... but I like to think of it as an exercise in curiosity and also an attempt to try to get back the brain I had pre-Lyme.”



    Tee-hee! Definitely a masochist! Yes, we’re all ridiculously foggy-brained. I am only just recently able to read a white-background website like yours for any significant length of time. (I did put forth quite an effort to read your website over the years, though!) I have an extreme sensitivity to light and (until recently - the Jasmine) I have had to stay inside during the day with heavy dark curtains covering all the windows.

    I also could not read lines of writing because it would all wave and jumble together.

    We’re all coming from a great disadvantage. This is why I just LOVE your article on Steve Hawking’s ability to work full-time just fine while being disabled - and how his situation is completely different from having a disabled body AND a disabled mind.

    Bravo on catching that one!

    ReplyDelete
  61. (from vm)

    Ran(t)dom Comment:

    Mob Science is just as bad as Mob Rule.

    In this case, it doesn’t matter what the majority of people WANT to believe, it doesn’t make it so. Scientists still have to do science. And if they find no more improvement in people on long-term antibiotics than those without, then that’s the way it is and we have to find some other cause for our pain and some other way to improve our symptoms.

    ReplyDelete
  62. Hi velvetmagnetta,

    You have written a lot lately. I'll take it one comment at a time, but one comment does not necessarily equal one comment from me because when I quote you and add my response, it generally means additional comments based on maximum characters (which, as you may have noticed, is around 4,000 characters per comment).

    velvetmagnetta wrote:

    "I’m responding to the Neuropathic Pain post first.

    Thank you for all the nerve pain information. I thought I had read all there was online about nerve pain already but I never saw the JAOA paper. It does look a bit heavy, but I’ll try to get through it."


    I mainly provided a link to that paper because it provided a solid basic overview of neuropathic pain and how to treat it - less because it is a JAOA paper.

    "I’ve tried many of the drugs listed on the about . com website. Goodness, I’ve tried just about everything but am willing to try more..."

    I don't think the best tools/drugs are available yet to treat neuropathic pain. All have their downsides, their negative side effects - and not everyone responds positively to them. I think where technology needs to go is targeted pain relief, but also applying technology (poss. stem cell) to repair nerve damage.

    Until then, the general choices you have are certain antidepressants and anticonvulsants, pill-wise.

    "I don’t know about the TENS, though. It sounds an awful lot like the “Rife” machine that, having formally studied physics, to me doesn’t seem to have any basis in science - or reality for that matter! This is not to say I haven’t tried it. I am that desperate - as are we all."

    TENS units have mixed reviews when it comes to the research. Spotty. But the two immediate benefits they have is under health insurance, they may be covered as part of physical therapy and for the most part, they have a good ground and there's less risk of getting shocked/electrocuted. Quality assurance is higher based on what I've read - including the instructions which come along with different Rife devices.

    But also, far as I know, no one is attaching specific claims to TENS units that they can be "dialed to a certain frequency that kills microbes". There's no evidence for that occurring either with TENS units or Rife, although it has been claimed that Rife does exactly that.

    Oh, and the third advantage of TENS units? If you buy your own, they're much cheaper than Rife machines.


    "I wonder if a hot shower wouldn’t give more relief. That will be my measure - does a pain therapy offer more relief than a nice hot shower or in your case, a nice hot bath."

    Well, hot showers and baths are easily accessible. And they do provide at least some temporary relief for me, if they are very hot. But also, it helps to add magnesium bath salt like Epsom salts.

    "Massage would be great if it didn’t hurt so much."

    Depends on how actively you're flaring, perhaps? I've found it helps when my symptoms are more on the dull side of burn rather than sharp side.

    "
    Osteopathy might help by, among other things, stimulating the blood vessels to flow. Sometimes I can barely walk to my bathroom (that’s located inside my room!), then, in the same day, I may trot up a flight of stairs, no problem."


    Nod of recognition here. I don't think osteopathy would hurt. The question is whether or not it's important to you how evidence-based it is. Some people rank osteopathy with chiropractic work, which has pretty strong detractors.

    You also have to weigh two different things if you decide to try osteopathy: 1) How does the price compare to massage therapy? and 2) How does the outcome of treatment compare to massage therapy?

    Of course, one then also has to compare a GOOD massage therapist against a LOUSY one... and the trained osteopath could provide more symptomatic relief than the LOUSY massage therapist.

    ReplyDelete
  63. velvetmagnetta wrote:

    "Does this happen to you? I noticed that you said your symptoms do ebb and flow, but do they vary this much in the same day?"

    I can be more functional in one part of the day and less functional in another. It can vary as much as you're stating. But more often than not, as more time has passed since I was first infected, I get bigger blocks of time where my symptoms are at the same annoying level throughout my body.

    I can have episodes of sharper pain during the day (and sometimes at night) and these can be over in a blink or last longer. But at baseline, I am experiencing longer stretches of sameness over time. My experience here is very much in line with that which other patients have reported: Over time, with treatment, their "good hours" begin to outweigh their "bad hours" and their "good weeks" begin to outweigh their "bad weeks". ("Good" and "bad" being highly subjective here, though - in some cases, what people really mean are "less bad hours" compared to "pretty bad hours" rather than "good" versus "bad". At any rate, there is reported improvement over time with many people - but sadly, improvement does not necessarily mean back to normal or cured.)

    "What manner of damage is intermittent like that? If the nerves are damaged, shouldn’t they be damaged all the time? I don’t understand this at all. "

    I'm still trying to get a grasp of the process myself, and because Lyme disease's pathology isn't completely understood, more research is needed. But in general, CNS nerves aren't the issue here - peripheral nerves are, and they are the ones most affected by Lyme disease. http://www.medscape.com/viewarticle/774686_4(bit there on nerve repair).

    Nerves can try to repair themselves, but it is very slow-going and one can experience nerve pain in spurts. So in that respect, I'm not surprised that there is intermittent nerve pain. But none of this nerve pain is occurring in isolation, so that complicates matters. One's body is also dealing with inflammation, and a flood of cytokines/chemokines (re: http://en.wikipedia.org/wiki/Cytokine and http://en.wikipedia.org/wiki/Chemokine). This inflammation is also going to vary, depending on a wide variety of factors - such as whether or not one is acutely infected, whether or not one has a coinfection, whether or not one is having an allergic reaction to something, whether or not one is under stress, if you're female, what part of the menstrual cycle you're in or if you're pregnant, etc. All of which can alter how one experiences inflammation, and what I listed is only some of the factors involved.

    (continued)

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  64. Because of the inflammatory nature of the condition, this is why some patients experiment with diet especially allergy elimination diets. They're looking to reduce the source of any inflammation - of which a food allergy certainly can contribute to inflammation. And this is low-hanging, low cost fruit, really, in terms of alleviating symptoms: If you feel better cutting out sugar and gluten from your diet, then you feel better. So hell, why not change your diet?

    As time goes on, research is providing more evidence that eating sugar - especially refined sugar, and not sugar found in fruit which comes with all these other good things like vitamins, minerals, and fiber - is not good for you anyway. So I see no harm in reducing if not entirely eliminating refined sugar from one's diet.

    With gluten and dairy (the two biggest Lyme disease patient diet removals), one has to be careful one isn't becoming vitamin deficient and replace B vitamins if deficient, and also be careful one isn't too low in Vitamin D and calcium. One can work around these diet changes through eating alternative foods with the right nutrients and supplementation.

    But change of diet is just one experiment patients conduct. Patients also try different herbs which may be immune modulating and can reduce inflammation, and of course, try anti-inflammatory pain medicine - but outside of aspirin helping a few people (and it's not clear that one's positive response to aspirin is for its anti-inflammatory properties or its anti-coagulant properties or yet other properties) over the counter NSAIDS don't seem to help people, and opiates are of limited use.

    There are many different things people are trying - your use of jasmine is the first I've heard. And we can add that to the stack of herbal, alternative treatments people use to treat chronic Lyme disease. Sadly, no one is studying these treatments in any controlled way, so it isn't clear if certain herbs would be better for the majority of patients or not.

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  65. velvetmagnetta wrote:

    "This reply is in response to the “treatments” comment (improvement by 5%):

    I’m with you on not posting any treatments - but not because different things work for different people - but because it seems that NOTHING is really working for ANYBODY."


    Yes and no. Over time, I've observed that some people really do get better. I'm not relying on reading the Lyme disease fora/online groups for that observation, by the way. I'm relying on observing real people who show up to support groups, who I know tested positive for Lyme disease and/or had the rash. Some people eventually DO get better, and they go back to work at least part time, and others full time.

    But I don't know in actuality how many people do. Because no matter which way you slice it, no one I know of is adequately tracking patients with Lyme disease who go on to develop persisting symptoms. And basing one's understanding of what's happening on online fora is dicey at best - some people stop posting, and we don't know if they got well and left or spiraled down. Some people who are ill do not frequent the Lyme boards and never got there in the first place. Some people on Lyme disease patient fora are self-diagnosing and treating with everything but the kitchen sink, and have never seen any doctor for their symptoms so no one can confirm what their condition(s) is/are.

    "
    They say it makes them feel better for a little while and then they’re right back posting on the Lyme boards with a “relapse”.



    Based on their experience, a relapse is what it feels like. I don't know if anyone can be certain exactly what's going on, but I can say at least early in my treatment (and like all things chronic Lyme, "early" and "duration of treatment" is relative), if I stopped antibiotics, within 72 hours my symptoms came flooding back. Or rather, they became more severe. Once I would go back on antibiotics for a week or so, the symptoms would get turned down several notches on the pain scale.

    My experience - and that of other patients I've talked to - is not so much that the antibiotics cure you. At least not right away. It's that they prevent one from feeling worse, and in many cases prevent one from being severely ill and dysfunctional.

    I can't claim that on antibiotics ALL my symptoms went away. They did not. They were, however, less bad, and as time went on, with treatment, I regained more function, experienced greater mobility and energy. But I never went back to baseline.

    (continued)

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  66. velvetmagnetta wrote:

    "I put “relapse” in quotes because we cannot seem to scientifically validate whether Lyme is chronic or not. The relapse may not be due to an active infection at all, but instead it may be from damage the organism incurred on the body while it was alive. Or it could be from something else entirely, as yet undiscovered but definitely Lyme-related."

    You may be right. Have you seen the recent research on Lyme arthritis? There's some evidence that what's happening with treatment-resistant Lyme arthritis is that it is a condition similar to a lysosomal storage disease - not a chronic infection and not a classic autoimmune disorder, either. I'm waiting to see how further research on this pans out. (See: http://www.jci.org/articles/view/72339)

    But knowing that, Lyme arthritis being similar to a lysosomal storage disease may still not apply to every patient with chronic Lyme disease - and particularly those with more systemic presentations which including nervous system involvement. Quite a number of patients with Lyme arthritis complain ONLY about bad knees, and otherwise feel okay. I suspect/speculate that their condition is different than those patients with more systemic symptoms. But take this for what it is: speculation. I don't know the answers here.

    Regardless of the cause, because we are lacking the needed research to better understand what's going on, what does one do about treatment?

    If some patients are experiencing improvement from more antibiotic use - regardless of the mechanism involved - based on compassionate use, doesn't it seem prudent to allow access to that treatment until the condition is better understood? It's an ethical issue as much as it is a scientific one.

    "But the Lyme community is so focused on PROVING there is an ongoing, active infection that scientists, researchers, and doctors are also focusing on proving/disproving active infection."

    Yes and no. What I am seeing is that much of the Lyme disease patient community and advocates want to prove that there is an ongoing persistent infection but very few researchers have been doing the work to provide the needed evidence that it is persistent, and that it has been difficult to get funding for such research. Go to the NIH website, search for chronic Lyme disease (or even post treatment Lyme) and tell me what the studies state.

    Parallel to this, there are researchers who are intently focused on the immune/inflammatory nature of Lyme disease, and studying that. If anything, after sifting through reams of papers, the focus has been more on Lyme disease and the immune system than on persistence.

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  67. velvetmagnetta wrote:

    "When all along, what if it isn’t active? What if some other mechanism left over after treating the Lyme infection is responsible for our pain and disabilities?"

    Okay. Let's run with that hypothesis. Let's say that that it's some other mechanism causing pain and disability, and not active spirochetes... Now what? How does one determine how to treat it? How long do patients have to wait before a new treatment is developed? How long do they have to wait before a clinical trial? How long do they have to wait before there's a insurance-covered treatment available nationwide? Worldwide?

    The problem is, in the meantime there is a lot of waiting involved and people are suffering now. That's the immediate problem, a need which must be addressed. The second problem is I don't think those who do improve and recover by using additional antibiotics have been adequately studied and followed up on. We can agree not everyone improves and is cured by longer term antibiotics, but what about the people who do improve and get their lives back? Why is there not more being done to study and track these individuals by independent researchers? Because if their treatments can be described and applied to others who are a well-defined group of patients who are antibiotic responsive, it could help many people.

    "We’ll never know because everyone’s fixated on this chronic/not chronic thing. I think it is pretty obvious that many of us have pain way beyond short and long courses of antibiotics."

    I don't think research is actually fixated on that dichotomy. In fact, a lot of advocates take issue with the fact that it isn't. Instead, I think research has been more focused on immune factors, and it's already looking at different possibilities for causation.

    But in the meantime, as patients we're still left with having decide how to treat and how to improve our quality of life. Which road to take? Which treatment? It's entirely up to you and the doctors you consult.

    No one is conducting new treatment studies. Not the NIH. Only privately funded research, like the funding of Lewis' antibiotic research on persisters and research on VGV-L, of which I have heard nothing in a long time.

    "I agree that if, in fact, the disease is still the body, hiding from antibiotics and our immune systems, then we do need to find that out.

    But I’ve always wondered if it’s hiding so well, then why would we feel any pain from it? It is hiding from the immune system, so the immune system shouldn’t be reacting to it.


    Hypothetical questions: Can you still experience nerve pain from nerve damage done by an organism which is quiescent/metabolically slowed? Can you experience inflammation from the presence of organisms which are in a low metabolic state? Can metabolically slowed organisms create blebs and push antigenic material throughout the host's cells? (Refer to studies on cholesterol and bacteria, too, while we're at it.)

    Another consideration: What is the difference between dormancy and being in a low metabolic state?

    (more later)

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  68. velvetmagnetta, the one thing to consider based on your view is that whether or not the spirochetes are alive or dead they are still causing inflammation, no? http://spirochetesunwound.blogspot.com/2012/11/inflammatory-spirochete-debris-left.html And, as has been postulated at that link, could biofilms play a role in how inflammation develops?

    To quote from the author of that article:

    "Stricly speaking, the authors are correct. Persister cells should start multiplying again in fresh culture medium. However, it's hard to dismiss the biofilm hypothesis completely given the known examples of culture-negative chronic infections associated with biofilms (see this review for one example). Electron microscopy of the joint tissue could reveal whether these deposits are intact spirochetes or debris."

    When I mentioned in another comment that Dr. MacDonald had criticisms that further confirmatory studies were not completed by Bockenstedt, electron microscopy was one such study. The author of this article points out the same. Something to consider.

    It's also important to keep in mind that host response to the bacteria differs, and the degree of inflammation can differ based on the host.

    You might want to consider reading some of the research on TB to get a better picture of persistence and inflammation. See for example: http://www.nature.com/emi/journal/v3/n1/full/emi20143a.html

    Quote from the above article:

    "We hypothesize that ‘seeding’ with persisters or mother cells (dormant cells where heterogeneous persisters are derived) may be critical for successful establishment of infection and disease. In addition to the metabolic status of the bacterial cells that enter the host, the heterogeneity of host phagocytes might also influence the outcome of infection. Thus, interactions of the heterogeneous nature of populations of bacteria, such as M. tuberculosis, and of the macrophages that ingest them might cause a diverse range of possible outcomes. These outcomes include unsuccessful infection, successful infection with a transient immune response (lost after some time due to bacterial clearance), successful infection with a stable prolonged immune response and successful infection with an immune response and disease pathology. This hypothesis needs to be addressed with animal models in future studies. At the level of granuloma lesions, there might be a varying degree of heterogeneous granulomatous tissue correlating to the degree of inflammation, ranging from quiescent granulomas with low inflammation to more active and dynamic granulomas with more active inflammation even in the same lungs, and over time. Recently, it has been shown that there are varying degrees of latent TB infection, ranging from nearly active TB to a latent state with a remote chance of reactivation.51"

    Welcome to the world of scientific speculation about persisters, and welcome to the world of a wide range of outcomes involving infection in the host.

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  69. All I'm saying in this is to consider that outcomes in infection are variable and depend on a number of factors. Because of this, one position I have taken is that I don't think everyone with persisting symptoms necessarily has the same condition, or same condition state.

    velvetmagnetta wrote:

    "There have been so many papers that have tried to prove ongoing infection, but for some reason there is always something profoundly scientifically suspect about the papers such as a missing control group or alleged contamination, unrepeatability, etc."

    Have you read all the papers in-depth? I encourage you to read the original papers and not just critiques about those studies. It's important to get an understanding that in some cases, the claims that contamination occurred were just that - claims - and they were not always substantiated.

    I'm still working my way through the web of all those papers and their critiques. It's a lot to do, and I'm only one person.

    The best thing anyone can do IS to repeat the experiment and see what the outcomes are. And do it under strict conditions so that contamination does not occur. There are protocols to follow for this.

    "People seem to think if a researcher takes some microscopic pictures of blobs located near spirochetes, that these MUST be blebs, L-, or cyst forms of Lyme. But that is just not necessarily so. Just because something LOOKS like that on camera doesn’t mean it is that and not some other bacteria or blob of something. There must be a DNA analysis done to see what it is, exactly."

    It would help to do a DNA analysis. Visual inspection has to be part of the process, though, unless you're doing pure post-mortem studies and grinding tissue up for PCR.

    "But unless you’ve gone to school for biology, there’s no way of knowing that, and it sure looks like it’s a form of Lyme."

    Well, this is how it got started, though. Trained pathologists in the field have had to do visual inspections and in many places in the world this is not just the first step but the only step before making a diagnosis. When testing for Babesia, multiple smears where the protozoa are present in red blood cells is the positive test. Antibody tests may not pick up every strain. So you use the tools you have at your disposal, and one of the simplest tests with a clear outcome is based on visual observation. Determining which strain of Babesia you have via DNA testing is great - if you have the facilities to do so. But ultimately, the smear is all you need to determine what's wrong and treat the patient.


    "Conversely, Linda Bockenstedt pointed out amorphous blobs of Lyme and got all sorts of flak from the Lyme community for saying that is WAS Lyme. She knows the blobs are Lyme because she attached the Green Fluorescing Protein to its genes and the blobs were both green and fluorescing. Can’t really go wrong there!"


    Was that the argument from the community? I must have missed something. I didn't think anyone argued against her claim that the GFP glowing were spirochetes. I thought the argument against her from the community was based on her assessment that they were dead.

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  70. velvetmagnetta wrote:

    "Whether there is an ongoing infection is important to know, but either way, there is an additional reason for at least some of our pain. If we don’t get beyond “chronic” Lyme, we’re never going to find out what this long-term damage is and how to fix it!"

    One can consider this hypothesis: The infection could persist, AND it deposits antigens throughout the body. Look at blebs and vesicles in Lyme disease pathology - what are they doing, exactly? What role do they play in pathogenesis? What do they and lipid rafts do to the host's cells?

    Even if you defeat the infection and this material is left behind - you're right, if it can't be cleared by the host's immune system and it causes inflammation, research needs to be done to find a treatment to remove it. But also, I think it would be better to figure out WHY the host's immune system isn't doing what it typically can do, and figure out if the issue is host-specific, rooted in a genetic defect in response to the organism - or if it's strain specific, and based on which Borrelia you contract - or some odd combination of both.

    "Different things don’t work for different people. Those people who say they’re better by using a combination of antibiotics and herbs inevitably come back to the Lyme boards and post about “relapse”. Nobody who has had Lyme for many many years has actually fixed it yet that I’ve seen."


    There is what I've seen and observed and then there is what has been independently verified by medical professionals and researchers...

    The problem is - and I've said it before - is that no one is independently tracking and verifying what happens to all these patients with persisting symptoms. Until one does that reliably and consistently, I don't think we have a clear picture of what is going on.

    You can observe a certain forum of patients over time and see that some report a relapse, some report improvement, a few report trepidation about going back to work or taking up a new activity, and a pile of people fall silent and no one knows if they got better or worse. And also, because some people join such forum who suspect Lyme in themselves but never see a doctor and begin with self-treating with herbs, if they come back and report a relapse, how can we be sure what the relapse is from? They haven't seen a family doctor or LLMD. So how do we "count" their case as related to persisting symptoms of Lyme disease? See, I don't have an answer for you there.

    As patients offering support, the best you can do with anyone is listen and provide advice if it's asked for, and suggest taking action which is more likely to lead to a confirmed diagnosis. Encourage people to see a doctor. Encourage them to get tested. Offer referrals. What else can you do?

    "If you have any knowledge to the contrary, please let me know."

    All I can tell you is I know of people who went from being unable to work even part time and having no social life to working at least part time and having a social life after taking longer term courses of antibiotics. These are people I have met in real life, not people online.

    But my saying this doesn't hold any weight in the scientific world, because my experience is anecdotal. The only way to move my experience and observations from anecdote to solid scientific data is for some independent researcher to reliably and consistently track patients with a diagnosis of chronic Lyme disease over time and see what their treatments are and use objective and subjective measures of improvement over time to see how patients fare.

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  71. velvetmagnetta wrote:

    "But this is what is so exciting about the Jasmine. I know I sound just like everyone else who says oh, I ate some tree bark and ground hamster turds and here I am, healthy as a horse!!!

    And that's the problem, for those who have a scientific mind and want evidence: Yes, you sound like everyone else who says "I ate some tree bark and ground hamster turds and here I am, healthy as a horse!!!" That's great, but from a researcher's point of view, they would need more evidence other than your claim that you're healthy as a horse (well, at least healthy as a healthy horse...where do these sayings come from, I wonder?). And objectively, how does one know it was the tree bark and hamster turds that led to your improvement and not getting more sleep and a gluten free diet - or the simple factor of time? Some would argue that "time heals all wounds" - whether that's true or not. So you can see what you are up against, in making your claims to an audience of skeptics. They can't believe you, even if objectively anyone could observe signs of health (you're active, your skin glows and there are no rashes, you don't complain about pain, you can walk at an even pace and take the stairs two steps at a bound, etc.) in you. Yes, maybe it's easy to see you are now healthy - but they will ask why, and not be certain it was the grass and turds that did the trick.

    Same thing applies to your jasmine experiment. Or anything else you would try that hasn't been extensively scientifically studied. That's how it goes, that's how the research world rolls.

    "I’ve seen the books that people write about how they’re all better now and jogging 20 miles a day and they have their picture on the back cover smiling with big white teeth, “I did it, so can you!”

    And it’s all complete bullsh_t because if you read on, you realize this person probably never even had Lyme in the first place or they had it for a very short period of time."


    Maybe, maybe not. No way to independently be certain, right?

    "And we all know that most people who catch it right away get better with a short course of antibiotics (not everybody, though)."

    Yes. The question remains, however, how many people encompass the "not everybody" crowd... How does one know how many people with persisting symptoms are out there?

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  72. (from vm)

    Hello CO!

    Just to clarify…

    vm:
    "Conversely, Linda Bockenstedt pointed out amorphous blobs of Lyme and got all sorts of flak from the Lyme community for saying that is WAS Lyme. She knows the blobs are Lyme because she attached the Green Fluorescing Protein to its genes and the blobs were both green and fluorescing. Can’t really go wrong there!"

    CO:
    “Was that the argument from the community? I must have missed something. I didn't think anyone argued against her claim that the GFP glowing were spirochetes. I thought the argument against her from the community was based on her assessment that they were dead.”



    Yes, I believe that’s true. And you’re right - She could have gone the extra mile and found out beyond any doubt whether the remainders were alive or dead.

    I think the problem was that she called them “amorphous blobs” instead of “cysts”. Cysts have a particular structure, so what she saw could not be categorized as true cysts.

    A cyst would be a form Lyme may take in dormancy so I guess if she would have used that word instead it would have implied that the Lyme is was still alive. But by using the terminology “amorphous blobs” it implied that the Lyme was dead.

    Sorry! It was an imperfect ironic statement…

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  73. (from vm)

    Here I am going, “Science this!” and “Science that!” and meanwhile, I’m recommending a totally unscientific treatment for Lyme!

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  74. Hi velvetmagnetta,

    Taking your most recent responses first - and then backtracking to the earlier ones next:

    "I think the problem was that she called them “amorphous blobs” instead of “cysts”. Cysts have a particular structure, so what she saw could not be categorized as true cysts.

    A cyst would be a form Lyme may take in dormancy so I guess if she would have used that word instead it would have implied that the Lyme is was still alive. But by using the terminology “amorphous blobs” it implied that the Lyme was dead.

    Sorry! It was an imperfect ironic statement…"


    This is something I don't understand - why everyone places so much emphasis on the cyst (or more properly spheroplast or round body form). A spirochete does not need to be in such a form in order to persist. When Barthold does his post-antibiotic studies, he finds whole spirochetes in tissue. They don't have to be "cysts".

    The round body form is interesting to me in terms of survival strategies, especially since it was found in the midgut of ticks and not only when being under threat in some form in vitro. But I don't think these different morphological forms are required for persistence.

    "Here I am going, “Science this!” and “Science that!” and meanwhile, I’m recommending a totally unscientific treatment for Lyme!"

    Yep. Pretty much. But remember, this is how dealing with persisting symptoms of Lyme disease is: No one is doing research on new evidence-based treatments for the condition, so patients like you and me are pretty much on our own with deciding which doctors to see and which treatments to try. Either it is more antibiotics, or herbs, or dietary changes, or body therapies, or antidepressants, or anticonvulsants - or some combination of those - or it's nothing at all. Those are the available choices.

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  75. velvetmagnetta wrote:

    "It just makes me so mad somebody telling me to drink ozonated water because that worked for them. Bull. It doesn’t work. And it doesn’t even work for them. They just really really hope it does, so they see an improvement. Or, if they have truly improved, it is most likely not due to some special water.

    The ‘placebo effect’ is a real and it is concrete and measurable. I have experienced it myself. Mindful of this placebo effect, I too have never written about a treatment before. This Jasmine is the first treatment in 5 years that has gone above and beyond that placebo effect."


    Yes, the placebo effect is real. I've had my own conversations in my head, too, where I don't care if the placebo effect is real provided I experience some relief due to it. The trick, of course, is to find the least expensive easiest way to trigger the placebo effect, right? Because then you aren't paying a lot for some form of self-induced improvement.

    Really, I think it's worth it to more closely study the placebo effect and what it is, because it isn't nothing coming out of thin air. It is one's own positive response to a treatment which is supposed to have no effect at all. Somehow, a positive physiological response has been triggered, and that response is the real deal. It's interesting.

    But setting that aside (and related to earlier comments I made): There is no way for me or anyone reading to be certain jasmine extracts has improved your condition. All I or anyone else can do is take your word for it. I believe you when I say it's helped you, and I'm happy you're doing better. But in order for your treatment to pass scientific muster, someone else has to be able to independently provide evidence that using jasmine extract has a) lead to your improvement and b) that you can demonstrate measurable improvement in some objective and observable way. That's just how it is. In the meantime, continue to use jasmine if it helps you and check in with a doctor about it. Anyone else reading along who wants to try jasmine should do their best to educate themselves about it and decide if taking it is a sound decision. But I can't advise it as a specific treatment for an individual patient as I'm not a doctor, and I can't even solidly point to a list of studies which provide evidence stating jasmine handily beats back the pain and dysfunction caused by Lyme disease persisting symptoms.

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  76. velvetmagnetta wrote:


    "One of my many doctors told me that over 60% of the nerves in the body control the digestive system. If my nerves are mis-firing, then that means over half of my damaged nerves are trying to digest my food.

    And, indeed, I found a spine map that showed where on the spine nerves responsible for the intestines are bundled in certain areas along the spine. Once place is just under the bottom of the rib cage. And sure enough, when I pressed on there, it relieved some of the pressure in my intestines - I could feel things move along after massaging this particular are of the spine.

    So, it isn’t the food I’m eating that’s causing all this discomfort, but instead, it is the nerves that control the intestinal peristalsis (contraction and relaxation of muscles along the intestinal tract)."


    It's pretty well documented that Lyme disease can affect the central nervous system and peripheral nervous system, and it's more common for there to be lasting effects on the peripheral nervous system. So involvement in this manner doesn't surprise me.

    Your digestive problems don't surprise me, either. I myself have had slowed gastric motility/gastroparesis that came and went due to Lyme disease nervous system involvement. For a few months, I could only eat a few bites before I felt full and forcing myself to eat more made me nauseated and I felt like vomiting. My stomach wasn't digesting the food at a normal rate. I lost weight.

    So none of this comes as a surprise to me. And either one has to try some massage (which is one mode of treatment I think is worth it), a low fiber diet for a short time, and/or some Reglan to get things moving along - past the use of antibiotics, of course. There are things you can do to improve the situation in the interim. In my situation, I found that outside of a big block of a few months, the slowed motility has typically been of short intervals and it passes with time and treatment.

    Are you familiar at all with this article?: http://www.thehumansideoflyme.net/viewarticle.php?aid=62? I haven't read through all the references cited here, but you might want to read it and review related references, and consider if anything there relates to your history and symptoms.

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  77. velvetmagnetta wrote:

    "Blood flow through the body and the sending of oxygen to the brain are affected by these malfunctioning nerves, I believe. I think where the nerves are messing up is the contraction/relaxation (on/off, inhibited/uninhibited) modes. The nerve gets a signal to contract, but stays contracted. Or maybe they stay in the relaxed mode causing numbness and tingling.

    Numbness, tingling, and fatigue I believe are all related to how the nerves speak to the veins to pass blood around the body. The movement of blood around the body feeds oxygen to the large muscle groups. If the are deprived of oxygen, they become fatigued, and the entire body feels this fatigue.

    The same may go for the cerebral spinal fluid that feeds oxygen to the brain. The difficulty Lyme patients have in getting the right amount of oxygen to the brain I think is the cause of the (in)famous “brain fog”."


    Well, that's one hypothesis - your hypothesis. But there are other considerations and different ways to look at what's happening...

    There's definitely evidence and it's well documented that nerves can be affected in Lyme disease. But there is also evidence that it can have an effect on the vascular system. And to complicate matters, if you experience, say, shortness of breath and pressure sensations in your chest, it can be due to various causes: Lyme disease can lead to paralysis of the phrenic nerve, which can lead to partial paralysis of the diaphragm, which is uncomfortable, painful, and can make it hard to take a deep breath. On the other hand, an infection with Babesia can lead to shortness of breath and anemia, so there's another possibility. Having infection with BOTH Lyme disease and Babesia can make the experience an additive hell. But what if you ALSO have asthma? What if you have bronchitis or pertussis at the time on top? Well, welcome to multiple levels of hell. Hopefully, you won't be so unlucky as to experience all this simultaneously and your problem has only one source.

    Only a doctor and proper testing can pinpoint the cause of your problems. It's really the best route to take to sort out what's happening. It may be simpler than you think. Or it could be more complicated. From where I sit, I have no way of being certain.

    Brain fog doesn't have to be caused by lack of oxygen. It can be caused by different things, just as shortness of breath and fatigue can be caused by different things. In Lyme disease, brain fog can be related to encephalopathy, to inflammation, to quinolinic acid... to infection of the CNS rather than indirect effect on the CNS. In other words, there is no simple "aha, this is what always happens in brain fog" answer for you. And the term "brain fog", while pretty damn descriptive of the experience, is so far a general description and not a specific diagnosis. Heck, even MS can cause brain fog: http://www.webmd.com/multiple-sclerosis/features/clearing_away_ms_brain_fog

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  78. velvetmagnetta wrote:

    "Camp Other, I did not realize that you had additional conditions other than Lyme. I’m so sorry. I know that makes this journey all that much more difficult."

    Thanks. Yes, I do. I think it's even possible that in my situation that prolonged stress waylaid my immune system, and led to why I developed those conditions, then later led to why Lyme disease affected me so severely - especially early in the infection process. That's my own personal hypothesis, and I don't have a way to substantiate it.

    "Though I have not seen this personally (except with LLMDs), I’m happy that you have found this to be true. But, Fibromyalgia and CFS are becoming more accepted diagnoses."

    Tell a number of people with fibromyalgia and CFS/ME that - especially in Europe. They will likely disagree with you. While I admit to not knowing the full story, some people with CFS/ME have been forcibly removed from their homes and hospitalized (look at what's happening, a fish smells in Denmark: http://dxrevisionwatch.com/2013/05/11/something-rotten-in-the-state-of-denmark-karina-hansens-story/.

    Some doctors still don't believe CFS/ME is a physical disorder/condition, and some doctors still deny the existence of fibromyalgia. Fibromyalgia has achieved more credibility over time, as research on the existence of small fiber neuropathy in patients with fibromyalgia has provided evidence something abnormal is going on - plus, the FDA has officially recognized fibromyalgia in effect, by approving drugs for the condition (Lyrica, Cymbalta, Savella). Stanford University's studies of low dose naltrexone on fibromyalgia has also given the condition greater visibility and led to more researchers' questions about the condition as a physical condition rather than a somatic or psychosomatic condition.

    ME/CFS, unfortunately, is still being considered by more doctors as being a psychological condition that should be treated with cognitive-behavioral therapy. And while therapy could be helpful to many people with chronic illness, there isn't solid evidence it helps all with ME/CFS, and for some it is harmful. Those who prescribe it as a sole means of treatment seem to be ignoring research which indicates there are immunological abnormalities in people with CFS/ME and objective ways to measure physical impairment (e.g. VO2 tests).

    "Unfortunately, now doctors think that these two syndromes are what we all have. Some of us may share similar symptoms with those suffering from FM and CFS, but we also have additional and/or completely different symptoms. But we’re all lumped into the now-accepted categories of FM and CFS."

    I think that's because no one is 100% certain what causes FM and CFS/ME, and even though with chronic Lyme disease, there's a clear preceding event (infection with Lyme disease) - the argument has been given also that FM and CFS/ME may be triggered by an infection as well. In that sense, they're getting lumped together by many doctors and medical professionals. But they have each had their own specific markers, and while perhaps a triggering event may have been an infection, perhaps different infections and somewhat different processes have led to similar symptoms. One can begin with a paper like this - "Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome" to see that something distinguishes at least two of these conditions from one another.

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  79. velvetmagnetta wrote:

    "This is most unfortunate and possibly dangerous because FM and CFS are “syndromes” that are defined by a set of symptoms and not thought to be caused by an antigen. And so therefore there is no known cure and indeed no search for a cure!"

    Not so fast. We don't know this for certain. Look at the kind of research Dr. Ian Lipkin is doing on ME/CFS. Look at Dr. Chia's research. And it may be that viruses or bacteria are responsible for other medical conditions like MS. We don't know yet, and this is why more research is needed.

    Lipkin's study: http://www.microbediscovery.org/the-study/
    Dr. Chia's clinic: http://www.enterovirusfoundation.org/directors.shtml
    Bacterial toxin may trigger multiple sclerosis:http://www.sciencedaily.com/releases/2014/01/140128153940.htm

    Interesting stuff. But I have no idea how it's all going to pan out. Figuring out what's going on takes time. Lots and lots of time.

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  80. velvetmagnetta wrote:

    "Plus, the treatments for FM and CFS are basically anti-depressants and Neurontin, neither of which helps all that much. And that’s where doctors stop. They don’t try to cure you or even try to alleviate symptoms that are outside of the normal list of FM and CFS symptoms!"

    Hm. Yes and no. Yes, doctors are treating FM and CFS/ME with antidepressants and anticonvulsants. And they are using drugs like Lyrica, Cymbalta, and Savella - which have more than one effect - on FM. But these are not the ONLY treatments some doctors are using. Some doctors are trying low dose naltrexone (LDN) for fibromyalgia and CFS/ME, and some doctors also prescribing it for chronic Lyme disease patients. Some doctors are trying far more outside the box, off-label treatments too. So there are other things being tried. I think what you may have meant to say is that very few evidence-based treatments which have been studied through clinical trials have been offered. That would be true.

    "What if it isn’t FM or CFS? What if it’s not even Lyme disease anymore? If Post-Lyme is not FM nor CFS, then what is it? Has anyone in the mainstream medical community even thought about this?"

    Yes - I think some researchers have thought about it. Refer to my link on Lyme arthritis as being similar to a lysosomal storage disease. But that's just one study and it's about treatment-resistant Lyme arthritis alone. It doesn't necessarily apply to everyone else with persisting symptoms - especially neurocognitive ones.

    The way things pretty much look, from my perspective: Microbiologists and immunologists ARE considering different causes of persisting symptoms in patients who contracted Lyme disease. They are looking at persistent infection, immune dysregulation, autoimmunity, metabolic disorders, and other possible methods/modes of causation for patients' persisting symptoms. At the present moment and for some time, persistent infection studies have received less focus and less funding than other kinds of studies related to causation. In the meantime, in the medical world, doctors and nurses in mainstream medicine are applying guidelines to treating Lyme disease (and in some cases, coinfections) which are based on studies which were completed over 20 years ago. The IDSA's 2006 guidelines for treatment are very similar to those published in 2000, and a lot of those guidelines from 2000 are based on patient studies dating back to the late 1980's/early 1990's. ILADS has been independently doing their own thing in terms of treatment, originally based on the idea that Borrelia burgdorferi sl can persist in the host and requires more treatment especially if found in later stage.

    "I know some people have, but the majority of researchers and those in the Lyme community are concentrating on proving/disproving chronicity. Although I agree this is an important area of research, it leaves us all out in the cold by not addressing what we all know really does persist after treatment…And that is: OUR SYMPTOMS!

    Nods. At the same time, however, what I've observed is that no one is really developing new treatments and testing them for patients in our situation. Chicken, egg; horse, cart: Do we NEED to fully understand causation in order to develop new treatments - OR, as is the case with many other conditions, why not work to develop more new treatments based on hypotheses and see if they help? We don't understand what exactly MS is and how it comes about - yet there is a lot of treatment development going on for it and many treatment trials. Why should chronic Lyme disease or post treatment Lyme disease be any different?

    (more)

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  81. (continued)

    As anyone who has read this blog over time knows, I've asked this same question many times in different forms. If more antibiotics work for some people - fantastic, their treatment problems are solved. But for those who either are allergic to them or stop responding positively to them, they need options, too. So far, those options are herbs and the drugs used to treat neuropathic pain and a smattering of alternative treatments.

    "Whatever the cause, we all are still hurting. And badly because many of us can’t even work! What are we going to do then, as a nation, as this disease spreads (as all ignored diseases tend to do) and infects a majority portion of our population?"

    Good question. If many people develop the same problem, over time it will have a major impact on the economy. Because not only will we not be working, and thus not being productive and not investing money or creating new companies and new wealth with our earnings - but we'll be draining what little we have to go towards medical expenses. We'll be boosting the healthcare/medical industry part of the economy, close to the exclusion of anything else save a few alternative medicine vendors. And only until we're flat broke. (Hey, at least that is what happened to me. I'm an individual example of what happens.)

    "Who will then be eligible for Social Security Disability if most of us end up disabled?"

    I don't know. The system can't continue to support itself if those who pay into it are too ill too early on. The reason it works is everyone working (or nearly everyone) pays into the program, and not everyone is expected to draw from it. But if everyone begins drawing from it, the program will run out of money. There's already been much arguing over the years about when social security is going to collapse in general, let alone the disability program part.

    So far, not everyone who contracts Lyme disease is getting persisting symptoms. It is still only a percentage who are affected. And the question to factor into this is also the sad question: even if we did NOT contract Lyme disease and develop persisting symptoms, how likely would it have been we would go on to develop some other condition which was also painful and making us dysfunctional? Does the current system (as it stands) account for that possibility, in terms of how many applicants it can take on at a given moment? I don't have the answer for you.

    ReplyDelete
  82. velvetmagnetta wrote:

    "When you went back on antibiotics, how much better did you feel? And how functional were you while on the antibiotics? Functional enough for full-time work or even part-time work?

    When I initially became ill, I was almost completely bedridden. I could crawl to the bathroom on my hands and knees. I could crawl into the tub to take a bath, but I could not stand to shower. I could not even SIT to shower. And initially, I could not raise my hands over my head to wash my hair. That's how bad off I was.

    With treatment, I began to be able to slowly WALK to the bathroom. I could sit to shower. I could - at least for short periods of time - raise my hands up to my head and wash my hair.

    During the first year of treatment, I didn't refill my antibiotics at some point. At that point, I was able to drive for about 10 minutes to a store, shop for 10, and drive for 10 minutes back home. Then I would immediately lie down once in the door. When I stopped taking the antibiotics for 72 hours, I had trouble walking to the door again, and I had so much vertigo I did not feel safe enough to drive for even 10 minutes. My muscles burned with the slightest exertion, whereas when I'd been on the antibiotics, I had a slight burn and some heaviness on them but could do things around it.

    That's during the first year. I eventually did go back to work, but if you read my story, I eventually experience a relapse in my symptoms after stopping antibiotics for a while when I was working - and a worsening of symptoms as time went on.

    In my experience, as time went on, with each time I had a break in antibiotic use up until that point where I was working, over time it took LONGER for my existing symptoms to return to the severity they were when on antibiotics and it took LONGER for new symptoms to develop.

    This is, of course, only my personal experience so take it for what it is.

    "And is being just functional a good enough reason to put all our eggs in the “persistence” basket?"

    Depends on who you ask? From a short term, need-to-get-shit-done point of view, being just functional enough to return to work so I could pay my bills and have insurance again was at the time a good enough reason for ME to take more antibiotics. If I could keep the severity of the symptoms turned down enough to work at least some, and to get 5 hours of sleep a night rather than 2 or zero, that was a measurable and obvious improvement for me. Was it optimal? No. Optimal for me would have been either back to my original normal baseline or even better than that - being in top physical and cognitive condition. Having above average stamina and above average focus and memory. But of course, that's not where I ended up. Not even close.

    But most people, I think, given a choice, will try at least something and give credit to it if it seems to contribute to them positively - no matter how small an improvement or imperfect an improvement. And really, looking at the situation as a whole: What other options did I have at the time? I didn't see any. I wasn't offered any, either from an LLMD or my family doctor.

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  83. (continued)

    And it wasn't about putting all my eggs in the "persistence" basket at that point, when I made the decision to continue taking antibiotics. That wasn't actually part of the equation at the time. I knew that some doctors and patients had told me that Lyme disease could be chronic, and that research and trials challenged that position. Okay, fine - I knew that, but on a day-to-day basis, that really didn't matter. What mattered was how I felt and what could I do to avoid more suffering and pain and how could I return to doing what I had been doing before I got sick.
    If antibiotics were helping at the time and the benefits outweighed the disadvantages, then I took it. On a personal level, that seemed to be the case, so I kept taking them. I also had external validation from other people who remarked (at the time) that I seemed to be doing so much better, and friends would tell me without any prompting from me that they noticed I was able to do something (some action, some activity) without struggling since I'd gotten more treatment. They also noticed how I declined when I didn't immediately get my refills, and I didn't tell everyone I'd done so when I did so at the time I considered this data as having some merit.

    That's what happened. I stopped taking antibiotics for a long period of time because the disadvantages began outweighing the advantages for me, individually. And unfortunately, I haven't gotten better. Some symptoms went away. Some stayed. Some new ones showed up. I have good days and bad days. And sometimes I have very crappy times.

    But I'm not sure what I should try next. And when I do try something, I don't write about it here in general - for all the reasons I've said before why I generally avoid writing about treatment approaches.

    (Okay, I'm taking a break here for a while as I need rest. I'll pick up responding to more of what you wrote later and see if Blogger posts have a built-in comment limit I didn't know about...)

    ReplyDelete
  84. A Built-in Blogger Limit surely should have kicked in by now!

    I don't get something. And I'm not trying to knock something that worked for you. If it worked, it worked! Period (or exclamation point)!

    For my own personal information, what I'm trying to flesh out that I can't seem to through reading all the blogs and personal websites is this:

    How bad did you feel just before starting antibiotics?

    Then, after starting antibiotics, did you get a herx reaction - symptom flare or extra symptoms.

    If so, how long did it last? Was it worse than what you felt before starting the antibiotics?

    Did your herx come to an end and that's when you began to feel better? Or do you still feel the herx, but to a lesser degree?

    Also, you stopped antibiotics and then felt worse. When you started them again, did you herx all over again? Or did you feel only better after the re-start?

    I know this is probably getting really annoying, but I'm just trying to understand something I cannot seem to get a handle on because my experience of antibiotics was so different from many people. My herx never came to an end! The only benefit from antibiotic for me was that (I hope!) it killed the Lyme and now, at least, it shouldn't be growing and reproducing.

    The rest has just been a world of pain. Did my herx never end because I had so many spirochetes in there growing over 30 years? Just trying to flesh this all out.

    And it's your fault for introducing me to flux! Now I can read and write here for HOURS!!! HAHAHAHAHA!!!!!

    ReplyDelete
  85. (from velvetmagnetta)

    Good Morning, Camp Other! I hope today finds you well - although that’s probably a long shot. I can wish it for you, though!

    CO:

    “…If many people develop the same problem, over time it will have a major impact on the economy…(Hey, at least that is what happened to me. I'm an individual example of what happens.)”

    I am so sorry to hear that your troubles extend far beyond your health worries alone. I, too, lost everything I had, but because I’ve had this disease so long, that wasn’t much. So, I can kind of relate, but not to losing an entire life's work at one time. That must have been devastating.

    Earlier you said that you believe prolonged stress caused you to react badly to Lyme - I am unclear, did you mean that the stress was from having Lyme or from a previous health problem or something else altogether? I don’t want you to reveal too much personal information online, but can you tell me in general which was the case?


    Re: CFS and FM -

    I did not mean to sound as if I thought there was not a virus or bacterial cause for CFS and FM. I meant that it is not generally accepted in the medical establishment that these two disease are caused by an antigen - and so therefore, they are only thinking of treating the symptoms, not actually curing your disease until you are well.

    This is also an unfortunate state also for people who never had Lyme but do have CFS or FM. Additionally, I think that CFS and FM are two separate diseases that we will one day find out are caused by two different antigens!

    But alas, most doctors aren’t even looking.

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  86. Hi Camp Other!

    (velvetmagnetta here again)

    I just wanted to clarify what my actual point was in bringing up Linda Bockenstedt's Lyme debris study. It wasn't to debate whether Lyme is chronic or not, but instead it was to talk about the dead Lyme debris that she did find. At least some or most of the spirochetes were dead in her mouse ear cartilage pictures - but what the most interesting thing about the dead bacteria (ignoring the fact that there may still be some alive and hiding) was that it was now not just concentrated in the ear, but smeared out all over the ear.

    When the spirochetes were alive, they amalgamated about the ear together. But when the antibiotic killed them, they were in a big smeared-out mess. But the amazing thing about this smeared-out mess was that it elicited an immune response from immune system cytokines!

    And the reason I found that to be so interesting was that before I finally began to kill off my 30-year long Lyme infection, I felt pain and had swelling and redness concentrated around my joints (knees, ankles, fingers, toes, elbows, etc.). But AFTER beginning the antibiotic treatment, it FELT like the infection had spread out all over my body to the point of no longer being able to determine exactly WHERE the pain was...It was just all over the place.

    When I saw Linda's pictures of Lyme being spread out all over the place and causing the immune system to react to it with inflammatory cytokines, I immediately felt, "Oh my God. That's EXACTLY what this feels like!"

    So, just to be clear, I wasn't intending to get into the never-ending chronic/not chronic debacle.

    I hope all is as well as it can be with you!

    -vm

    ReplyDelete
  87. Hi Camp Other,

    How may I contact you? Do you have an email?

    Thank you

    ReplyDelete
  88. Hi Anonymous,

    Either contact me via Twitter by following, msging/DMing or email me at gmail - CampOther.

    CO

    ReplyDelete
  89. Hi Camp Other!

    I hope you are doing alright -- I haven't read any of your wonderfully informative posts over at Lymenet Europe lately. I hope all is well with you!

    A couple months ago, I attempted to leave a message here, but could not. Perhaps others encountered this problem when trying to communicate with you via this Camp Other website?

    Hope to hear from you soon - either over here or at LNE.

    -vm

    ReplyDelete
  90. Hi vm,

    Sorry, I haven't checked my comments on this blog in months (obviously) and am only replying here now.

    I've continued to post on Twitter, but have not been doing any long form writing or posting to LNE for a variety of reasons. Publicly, I'll state that I've been more fatigued and unfocused than usual, and it's been difficult to motivate myself to post at length online. I also have had a lot more doctors' appointments and tests than usual lately, and continue to - and these sap my energy after a while.

    I have had no private emails regarding difficulties in leaving comments here on the web site/blog for some time. If you ever encounter a problem with it again, please let me know by emailing me at CampOther at gmail.

    I'm not certain how long it will be before I post to LNE. Know though, that I periodically read what people are posting on LNE and am more or less up-to-date on at least a weekly to bimonthly basis lately.

    CO

    ReplyDelete
  91. Came here from your Twitter. I can relate to so many of your symptoms and opinions. Especially where you explain how sleep became a welcome escape via unconsciousness to the point where if you passed out, you wouldn't care. I remember being there too. Love your mission, keep it up.

    ReplyDelete
  92. Hi Tara and welcome to Camp Other blog!

    Thank you for taking the time out to read my story and taking a look at the site. Appreciate it. Sorry we are both suffering with similar problems - I hope relief is in sight.

    Feel free to DM me on Twitter if you like or email me. I can't promise I will respond right away, but I try to respond when I can.

    CO

    ReplyDelete
  93. The word substitutions fascinate me! I was trying to find the word airplane one day and I called it an air train and then described it as a train in the sky with wings. I also have a major problem with homophones ... there, they're, their, hear, here, do, due, etc. I was trying to find if there was a particular part of the brain associated with this homophone difficulty. This whole experiencedhas inspired me to pick up where I left off with Neuroscience in undergrad but unfortunately, now I am trying to understand the human brain with a rather dysfunctional brain and trying to navigate my health with varying levels of cognitive function. I wish there was more written from patient perspectives analyzing the neurological aspects and what it feels like to feel your "self" flicker on and off. Some weeks/days/hours I am "on" as if all of the neurons are connecting like they used to and some days I'm so "off" and can't find too many traces of my former self. I feel like a wire with a disturbed connection or like intermittent internet access. The most fascinating thing to me, was that when I first started treatment and really made progress I had this moment of feeling as though I was 13 years old again since I've had undiagnosed Lyme for about 16 years. So when I first felt that glimpse of feeling better, it was as if my brain associated that feeling with being 13 again just in the same way certain smells can take you back in time. My brain was like ahhh yes, I remember this sensation... 8th grade, 1999. So weird! Did you ever feel that way or can you recommend any good resources for exploring the fascinating neurocognitive effects of Lyme?

    ReplyDelete

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