Monday, May 7, 2012

10 Commentary On Chronic Lyme Disease and Skepticism

When I began writing this blog, I originally wrote it to give a point-by-point analysis of how one article in the Chicago Tribune, "Chronic Lyme: A dubious diagnosis", did not address the issue of whether or not Lyme disease could be a chronic and persistent infection after initial or delayed antibiotic treatment. I wrote the analysis using Carl Sagan's Baloney Detection Kit, because I thought it was a good framework for deconstruction of the article.

I thought this analysis would attract the attention of a number of skeptics, and from there, we'd engage in a lively discussion about how the article skirted the issue of whether or not chronic Lyme disease is possible and dive into the evidence for and against chronic Lyme disease being a persistent - if only subclinical - infection.

It never happened. 

Over a year later, and it still didn't happen.

And, to this day, only one person has ever left me a comment which directly challenged what I was writing about and judged the content of this blog - at least as far as the idea of persistent infection is involved.

That comment was this:
You error in giving any credit to the "chronic lyme disease" movement.

I recommend this paper in the current issue of The Lancet (Sep 2011;11:713-719) :

Antiscience and ethical concerns associated with advocacy of Lyme disease

Abstract: Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

And pertinent to this blog, the authors conclude, in part:

"This situation is not likely to end anytime soon. As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources. Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders. There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”.67 Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be."
         - LindaRosaRN


I responded to her, asked her a few questions, and she never responded in return. A drive by. 

She obviously wanted to be heard but did not want to engage. Her comment was on a post about the Huffington Post and Under Our Skin; it wasn't even related to the antiscience letter to which she referred.

And since then, it's been crickets all around when it comes to skeptics  - even though I get visits from Spirochetes Unwound (of Research Blogging), and other web sites which are science and skeptic-oriented on a number of levels.

It's almost as if someone gets to the front door of this site and decides it's not for them just because it mentions the words, "chronic Lyme disease".

I'm guessing the skeptical person who stumbles upon this page with that first glance thinks, "Oh, well, it's another one of those chronic Lyme activists. Why are they ignoring all the evidence that after antibiotic treatment, those with persisting symptoms develop an autoimmune disorder? I'm getting out of here. I'm not wasting my time on this..."

If they're thinking that, then perhaps an overhaul is in order for this blog because I'm not trying to ignore the evidence about autoimmunity or immune dysregulation related to persisting symptoms.

I'm trying to look at a number of different hypotheses - including chronic infection - because these topics are of interest to other patients and I think they all deserve discussion. And there are other hypotheses outside of chronic infection and autoimmunity which are being researched such as chronic Lyme disease as a metabolic disorder, and I give them exposure.

Because I enjoy science, I look at research and science news related to tickborne infections and their reservoir hosts in general, without any particular goal in mind other than to say, "Hey, look at this - isn't this weird/interesting/informative?" I want to inspire the curiosity of the world I have in others.

At first glance, this blog has been primarily written for other patients with persisting symptoms related to Lyme disease infection. But it has also been written to open the floor to anyone for discussion about different causes for persisting symptoms.

This includes skeptics. They are welcome to comment here and share their perspective, as long as they aren't rude and can state their position while providing supporting evidence.

After all - I have a history of being a skeptic myself, and at times don't just want the cheering section behind me saying they support me as a fellow patient. I also want someone to occasionally shake me out of my complacency if I've been stuck in it. I occasionally want someone to present me with a different point of view or new evidence if they have it so I can consider other lines of inquiry in trying to understand my condition.

I have to wonder sometimes if I need a colorful banner or animated message on the top left corner of the homepage which states, "I am a skeptic and a patient with persisting symptoms related to Lyme disease".

Or maybe I need a paragraph at the top of one of my sidebars in order to say more about who I am.

Something like this:
Side note to all scientists and skeptics, in case you missed it: 
This blog is written from the perspective of one person who has been in the unfortunate position of being a skeptic who is suffering from persisting symptoms after receiving an infected tick bite.  
I want answers to questions such as, "What on earth does someone in my position do?" and "What kind of pragmatic approach can I have to dealing with my illness when I am a skeptic and want evidence to support my position and the decisions I make?" and "What research is out there which supports one or another position as to the cause for my condition?"
This has to be done carefully, though, for the sake of my audience.

While I want skeptics to feel welcome here,  I don't want to scare other patients away who are dealing with the same struggles. And I want everyone to feel welcome here and not like they have to constantly defend their illness to others who may not only be skeptical - but who have the potential to engage in less than civil behavior online.

My concern here is not unwarranted. I have read skeptic sites for a number of years, and while I can read sites where issues concerning chronic Lyme disease are debated by infectious disease specialists, researchers, doctors, and patients - such as this BMJ series of Rapid Responses - I practically choke on some of the comments on this chronic Lyme disease post on Respectful Insolence blog, because some of the exchanges are insulting and do little to advance serious discussion about Lyme disease. (Some of them are thoughtful and intelligent, too, though, so I don't avoid reading the thread entirely just because there are insults.)

And I have to remind myself that any blog on the internet has the potential for ill-informed comments, regardless of the original content.

One response on the above linked blog betrays a certain basic ignorance about Lyme disease:
"Yikes, always knew Chronic Lyme disease was complete woo. It's called an anxiety disorder, get your meds. Even acute Lyme disease is looking to be a bit far fetched, now I am far from an expert but it seems a little bit out of a sci fi novel for a tick to harbor some strange virus, who proved this and what experimental data did they have? What were the experiments that prove that some tick borned virus is the cause of a human disease in the first place?"
What the... 

Acute Lyme disease looks far fetched and it must be sci fi that a tick harbors a strange virus?

Far from expert?

Indeed. 


And some comments are thoughtful and the response is respectfully delivered even if the content is something a number of patients would find disagreeable:
"...I don't doubt your story, but given how common tick bites are, it seems likely that an association could be found regardless of whether or not the tick bite actually caused the condition. Thus, anecdotes are not that useful in understanding the disease. Anecdotes don't tell us cause and effect. They show us why we should care, and they are important for that reason, but they do not tell us what is true. It takes a lot of carefully collected data to do that. 
How do you know the antibiotics are really responsible for your improved state of health? Remember, coincidences do happen -- during the summers I take Pulmicort, but is it really making my asthma better, or is the variable course of my asthma just being kind to me right now? I have anecdotes galore, but it's the clinical trial data that convinces me the Pulmicort really is working and it's not just my own desire for it to work making it seem as though it is.

Indeed, one day the truth may come out. But it'll have a hard time coming out when the science of Lyme disease is decided by politicians, and when those most invested in chronic Lyme disease would rather spend their effort treating patients than finding out whether or not they're actually doing the right thing for their patients. Too many of the positive studies I have seen have been enterprises in proving a point rather than testing an hypothesis; science can't be fair or unbiased or *truthful* if it does not entertain equally the possibility of being wrong."

They have a valid point. I can see that.

The problem is, when is this "one day where the truth may come out"?

I have to make decisions about what to do about my health TODAY.

That's the one truth which few of these exchanges seem to address:

How does one make an informed decision as to how to approach and treat one's condition when there is a medical controversy over how to treat it where one of the two options is not to treat it at all - and doing nothing leads to more suffering?

While the author takes the time to explain that anecdotes are not data (with which I agree) and that tick bites in and of themselves are common, there is plenty of medical research and documentation which provides evidence that a subset of infected Lyme disease patients go on to have persisting symptoms after initial treatment. For some of these patients, these symptoms are severe. For a number of them, symptoms persist not for months but for years.

The IDSA and other medical institutions and researchers acknowledge this condition. It's not well understood - but this phenomenon has been documented and is not the creation of a handful of woo charlatans looking to cash in on me.

And I am, for whatever unfortunate reason, the poor bastard who has this condition. And I:
- had a documented tick bite,
- developed an EM rash,
- received a positive blood test later on,
- developed all these symptoms which were clinically diagnosed as Lyme disease.

Unlike the claim made by Ms. Rosa above, no one has tried to con me into this diagnosis. I had a textbook case of Lyme disease. The evidence was there.

If anything, when I first contracted Lyme disease, I thought I was getting it taken care of early enough and would not have to touch the "Lyme controversy" with a twenty foot pole.

Unfortunately, life had other plans for me.

I ended up not being able to work, got sicker than I'd ever been in my life for months on end, then finally got better and off antibiotics and return to work... only to relapse, have to leave my job, and try to figure out what to do next.


Why me? I didn't ask for this. As someone who reads Free Inquiry on occasion, worked as a researcher, lived in a dorm full of physics and chemistry geeks, and thought Carl Sagan was one of the most brilliant and compassionate minds on Earth, I really did ask "Why me?".

But you know, the answer to a pathetic "Why me?" really is "Why not me?". No one asks for this. No one asks to be hit by a car, abused as a child, diagnosed with breast cancer, or to watch a parent die. We are all subject to things which happen beyond our control. It was just the random luck of the draw that someone who happened to be a skeptic would get a condition of which others are skeptical.

Ticks don't care if you like Sagan or vote for Romney. They just want lunch.

For better or worse, here I am. Now, how can I make the best of this? What can I make of this situation now that I'm smack in the middle of it?

I've thought that all I can do is write, research, and encourage others to do research. Learn and encourage others to learn more about tickborne illnesses. Encourage those who are out there who are working in microbiology and biology to engage in education and outreach which helps patients and sidesteps the politics. Educate one doctor at a time that someone with my condition exists, and that a tickborne infection can lead to chronic symptoms. Warn others and tell them to protect themselves when they go hiking and camping so they can avoid my fate.

Mainly what I want to do is get better and get back to living life as I was before - but this time, perhaps a little humbler, a little wiser, and with more compassion for others and more gratitude for myself.

In meantime, I keep hoping I'll meet others here who came from a similar background.

So far, in terms of scientists, I have had a few other Lyme disease patients with science degrees and research positions (or friends and partners of patients with science backgrounds) comment on this blog. Outside of these patients, researchers have commented less often and anonymously.

And I keep hoping someone who is a skeptic and also struggling with chronic Lyme disease or perhaps CFS/ME will come forward and we can review research together and try to make sense of it and figure out what the best course of action is. Even better? I keep hoping to see a microbiologist who researches Borrelia burgdorferi and has had persisting symptoms from Lyme disease take up blogging on their own and publish more insights of which are but a faint glimmer in my own head.

But so far? Crickets.

Surely we can do better than this. Surely one can light more candles against the darkness?

10 comments:

  1. Wow...all i can say is wow. You articulated so well things that need more researching more answers. I am going through this lyme battle myself. My blood tests show a lupus like auto immune problem. Been on high doses of antibiotics for 3 months for lyme and babesia. Not knowing if what my last symptoms are lyme or an actual autoimmune problem caused by lyme. I have asked myself many times...why me..like u said why not me. Things happen, even if we don't have the anwers we want, beyond our control. I do want to thank you for your blog.

    When I was first diagnosed with lyme, all the websites and all the info was overwhelming. I like to think not everything is lymw and thank you for your research.

    Hope that we all find answers that we are looking for. Do i see myself on antibiotics forever?, no. I Do know that whatever this brings we need to move forward, stop the why me questions and unfortunately just deal.

    Wishing you health and thank you again.

    -Romina

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  2. Hi Romina, welcome to Camp Other blog.

    It is not an easy thing, being a patient in this situation. It's not hard to feel as if one has been placed in the middle of someone else's fight, and as an innocent bystander, get hit by the flying debris. Is it a chronic infection and its effect on the immune system which one is trying to treat - or was this a hit and run, where the infection came and went, with an immune chain reaction that has gone wild in its absence?

    That is the core of the argument presented. That is what patients have to deal with, without any external test of validation to determine exactly what is going on - and only a battery of tests which offer a chance at inference can be used.

    Everything in this situation - whether or not you suffer from a tickborne infection or an autoimmune disorder - is a matter of indirect detection to some degree. And trial and error, through using empiric therapy, and seeing how you respond.

    Even if you have Lupus (as you state, you have a "Lupus-like" condition), then the way to treat it is by using some of the same drugs doctors are using to treat chronic Lyme disease and Babesia (Plaquenil, anyone?), and even then it's not clear if the first drug given to treat Lupus will work and it may take several months before one knows if it is in fact working. If not, one goes on to try the next drug for months - not knowing if it will work in advance, either.

    There are patients with elevated ANA levels which have been used to determine the presence of an autoimmune condition. But this is not a reliable marker. Patients who have empirically treated with antibiotics have later retested and were found to have normal ANA levels coincident with a return to a more asymptomatic state. What is the value of an ANA test? It in and of itself means nothing; one has to look at it in the context of an individual patient.

    "Been on high doses of antibiotics for 3 months for lyme and babesia. Not knowing if what my last symptoms are lyme or an actual autoimmune problem caused by lyme."

    I've been there. It's a choice as an individual you have to make, to try something on an empiric level - and based on whether your doctor thinks it is an infection or an autoimmune problem causing your symptoms. And there is always the small possibility it could be both.

    About the only thing to do which makes sense to me in this situation has been to not only try the empiric therapy - see if your condition is antibiotic responsive - but to consult a few specialists in specific areas which manage the symptom groups you have and see if they have tests to offer and differential diagnoses on hand.

    If they do, then that's more data to consider. If they don't, then you have a choice to make: commit to treating your condition as a tickborne illness, and find out what reliable tests and measurements of your improvements are, on your own terms and through research - or commit to trying to treat individual symptoms in a piecemeal approach - or do some combination of the two.

    "I have asked myself many times...why me..like u said why not me. Things happen, even if we don't have the anwers we want, beyond our control. I do want to thank you for your blog."

    This is not a great thing to have happen, but it's here now, so the next step is to determine what to do now that it has happened.

    I have not completely come to terms with my own chronic illness because my health has ups and downs. It's harder to come to terms with it because the ups can lead to hopes of improvement which are dashed - and the downs can lead to concerns of illness worsening. It takes a while to learn to ride the waves - the ebbs and flows - and do what one can when on top of things and be kind to oneself when at the bottom.

    (And you're welcome.)

    (More in my next comment)

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  3. (For Romina - continued)

    "When I was first diagnosed with lyme, all the websites and all the info was overwhelming. I like to think not everything is lyme and thank you for your research."

    I have had the same problem. You have my sympathy on this one.

    There is a lot of information out there on Lyme disease. Some of it is accurate, some of it is inaccurate; some of it is speculative while mentioning scientific research which could support it, some of it is highly speculative and has no research to back it whatsoever. And between all this information, it falls to the patient to try to make sense of it.

    When I was suffering from the initial onset of Lyme disease and Babesia, I was so sick and neurologically affected that I had trouble weeding through all that I read. It was overwhelming. I had to get help from those closest to me to help me decide what to do based on research and my symptoms. More antibiotics at that point were clearly warranted, so at that point that was the path I took. I still think at the time it was the correct decision.

    As time went on and I recovered more of my ability to think straight, I needed less assistance and could reason through decisions more easily.
    Unfortunately, it's still not as easy as I had hoped due to the lack of research for people in my situation. Or, more precisely: Lack of translational research. There is PLENTY of research on Borrelia out there. Down to the molecular level. It's just not directly helping patients.

    And for those who do go on to develop some form of autoimmune condition (the hypothesis being perhaps some patients do), there isn't enough translational research for them, either.

    Offhand, how did you find out that you have Lyme disease and Babesia? Do you remember getting a tick bite before all your problems? Was it a serological or clinical diagnosis for both?

    "Hope that we all find answers that we are looking for. Do i see myself on antibiotics forever?, no. I Do know that whatever this brings we need to move forward, stop the why me questions and unfortunately just deal."

    I suspect that in the future, once more research has been completed, those of us who suffer with persisting symptoms will have a clearer picture of what would be best to do. In the meantime, patients are having to make the decision what to try based on their doctors' advice and medical history.

    I don't think we have to just sit back and deal - that is limiting and disempowering. Like the parents who prolonged their son's life in Lorenzo's Oil, we owe it to ourselves to take a more active role in trying to understand what has happened to us and read research already out there. It may take a long time to put the puzzle pieces together - but with at least some pieces, a path may be made clear that is worth pursuing - and worth petitioning for more research on it.

    I see this path in the work of Isabel Dietrich, and Karen Newell-Rogers, and Alaedini. There is a distinct immune component to this disease which cannot be ignored. I also see it in Embers and Barthold's research on persistence. I do not see it in more vaccine development research.

    While I'd rejoice in a safe and effective vaccine if it were possible, it's already too late to help those of us who are already suffering. Those of us who are suffering today are in great need of research that helps us - particularly if some us are expected to have persisting symptoms for years (I'm several years into having them myself). Early diagnosis and treatment would help a lot more patients today, too, and that's something can be done immediately.

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  4. The way you write and articulate yourself is beautiful. Thank you for your response. How long were you treated for babesia and lyme antibiotics or are you still on medication?

    As for "Offhand, how did you find out that you have Lyme disease and Babesia? Do you remember getting a tick bite before all your problems? Was it a serological or clinical diagnosis for both?"

    My story begins last Summer 2011. First let me say that I have been going to parks every year since I was five. I live in NY and we have travelled to different parks in the summer for family barbeque's all over upstate NY. With this disease, my symptoms crept up one by one, and you blame one thing or another. My first symptom started in June when I had random shoulder blade pain. I practiced yoga at that time so blamed it on that. Anyway, as a month went by, I started having knee pains, random aches on both knees. Again, I blamed yoga and told myself to stop yoga completely!..which I did. Then July came around and I found myself not feeling right, couldn't breath and thought it was a mixture of heat/summer weather with anxiety since I was going through some stressful times. My breathing problems persisted, as if I couldn't yawn or something was wrong. I went to TWO ER visits, all said I had anxiety. By the end of September, felt like I was dragging my body to work and felt very heavy. I went to a primary doctor, and luckily she ran the ELISA test which came back positive and the western blot test...positive bands.

    The fun doesn't end there. Fortunately enough, my test results were posted online since the hospital/primary doctors can post results online for patients to see. I noticed I had 9 IGG Bands and 1 IGM Band..guess what she told me? That I had a past exposure and that it wasn't lyme...That's when I started digging for answers. I knew my body to well. One week later from seeing her, I walked to another ER with my printed results and told them, "I am dying, please give me drugs, i have lyme disease', and then said yes, you have lyme disease, 3 weeks will do...and you know the rest of the story. I kept on searching and reading for answers knowing that 3 weeks was not enough. Then went to another ID doctor and i tested positive for babesia..and they treated me only for 7 days.

    I found an LLMD in January, and since them have been treating both things..April was the first month were I felt almost normal, but not there yet.

    The fun part comes back into remembering if i had a tick bite..well by the end of May we went to a park and I remember having a mosquito like bite on my leg...but since I am always a mosquito magnet, I didn't think anything of it...this is where I got bit.

    I try to understand the IGG/IGM phenomena. CDC says IGG is past exposure and a older exposure. However, I have been reading that in chronic infection, IGM is more prominent..who knows...all i know is that I have it. I got diagnosed 4 months after the bite and have properly started higher doses in January and see an improvement already.

    Symptoms persists/stiff legs/tingling feet..

    Regarding the UPS and DOWNS of this disease, yes, it's true. One day you are ok the next not so well...it is hard to come to terms with it, but I learned..to take it day by day. I was planning on having a baby this year..but since all this started for now it has been put on hold until a future date.(This is a hard one for me..but I always say..things happen for a reason, even if we don't know what that reason is at the moment)

    We are our best advocates and know our body's best than anyone else out there. When something is wrong with your own body you just know. I think early and proper treatment is key, as well as prevention. Before this, I never knew what lyme disease was, if I did..I would have been more careful/cautious to check for ticks and protect myself when in wooded areas.

    (continued below)

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  5. Knowledge is power ...I joke sometimes that with this disease I know too much sometimes..and wish I didn't..but I do and need to move forward no matter what the future brings with it. I do think the body is able to HEAL. I sometimes notice that when I ignore the symptoms, I don't feel as sad/depressed...and just go on, even if it is being fake or a mask that I wear. Sometimes not focusing on this disease and taking your mind off of it, does my body good.

    -Romina

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  6. Romina,

    You said, "How long were you treated for babesia and lyme antibiotics or are you still on medication?"

    To some degree, I'm sparse on the details here so as to maintain my privacy. But also, it is really difficult to tally my antibiotic use for Lyme disease because since I was bitten I have been on antibiotic treatment for other purposes. Babesia is easier to tally up because I treated it in a solid block with several months of Mepron and a macrolide... To date, the Babesia hasn't seemed to return. I'm grateful.

    "I practiced yoga at that time so blamed it on that. Anyway, as a month went by, I started having knee pains, random aches on both knees. Again, I blamed yoga and told myself to stop yoga completely!..which I did."

    The knees could have been a potential tip off for Lyme, but these things are not always clearcut. The problem with tickborne disease is that symptoms overlap with those of other conditions.

    It's good to hear you were doing yoga. If you can find a way to take it up again without putting pressure on your knees and focusing on stretching, that could help with pain and mobility.

    The one thing I regret not doing more of is exercising due to fatigue. I sometimes think I should push more, and try to get in a short walk in the morning so my joints don't stiffen up more. Many doctors recommend exercise (to the extent you can do it and not hurt yourself).

    "My breathing problems persisted, as if I couldn't yawn or something was wrong. I went to TWO ER visits, all said I had anxiety."

    The ER is pretty much a crapshoot, and they are designed to divide people into two categories: life threatening condition or not. Did they check you out for anything else or just call it anxiety right away?

    In general, it would be useful if they at least pointed you towards other possibilities to follow up with your family doctor, such as GERD/acid reflux, asthma, and anemia - before they assume anxiety as a cause. Particularly if they did not run any tests which would indicate the presence of these conditions.

    Babesiosis can also cause shortness of breath - but it is generally not at the top of the ER's (or the family doctor's) list of diagnoses to consider. Sometimes not even with an obvious tick bite present.

    (more)

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  7. (For Romina - cont'd.)

    "I try to understand the IGG/IGM phenomena. CDC says IGG is past exposure and a older exposure. However, I have been reading that in chronic infection, IGM is more prominent..who knows...all i know is that I have it."

    You aren't the only one trying to understand this phenomenon. Researchers continue to observe differences in immune responses to tickborne diseases to understand their relevance in infection. I posted some studies here not long ago in the difference between genders in immune response to Borrelia and also undulating immune responses found in European patients with Borreliosis.

    In general, the dominant line of thinking is that IgM positive is expected within 4-6 weeks after inoculation, then an IgG response is supposed to follow shortly thereafter. An IgG response alone on multiple (designated) bands is supposed to indicate past infection or current late stage infection. From there, controversy ensues where a sustained IgM response is considered by many to not matter and continue to be present even after the infection is over. This idea about sustained IgM's lack of value has been hotly contested by a number of treating physicians.

    What do I think? I'm still looking into independent research on the issue of IgM response relevant to infection. I have more than a few questions about it.

    I don't think anyone can look at the tests alone to make a determination as to how to treat. Doctors have to look at medical history, risk of exposure, symptoms, and rule out other conditions to determine how to treat.

    "Symptoms persists/stiff legs/tingling feet.."

    I'm sorry. That really sucks. Keep moving if you can. I've been there, and I know it feels weird (trying to grab for handles on cabinets and the fridge and feeling that burning tingling cramp was disconcerting) but just keep moving past it. It should improve with more time.

    Has your doctor given you any advice on how to treat these symptoms?

    "I was planning on having a baby this year..but since all this started for now it has been put on hold until a future date.(This is a hard one for me..but I always say..things happen for a reason, even if we don't know what that reason is at the moment)"

    It makes sense to delay that decision if you are not feeling well, but once you're feeling better, I imagine your doctor would give you the go-ahead to have a baby. Doctors will treat mothers with antibiotics during pregnancy if they think mothers are at risk.

    "We are our best advocates and know our body's best than anyone else out there. When something is wrong with your own body you just know."

    I agree. It was a night and day difference before I was bitten by a tick and after to know that that something wasn't right. Anyone who saw me at the time knew something wasn't right and they were concerned about me. I tried to joke about it so others would relax. But I was moving slowly and not tracking conversations; I wobbled a lot. I spoke slowly and lost the plot when I'd talk to someone else. It was, in a word, BAD.

    I'm no longer that ill now. It did get better. I couldn't write this blog if I didn't get better. Occasionally have severe pain or blocks of time where I am more symptomatic. Unfortunately, this is not totally predictable...The hardest part of this condition is the unpredictability. It is what makes it difficult if not impossible to work and hard to make plans.

    I wouldn't look at me, by the way, to predict where you will end up. Everyone is affected differently.

    Maybe someday researchers will come up with specific biomarkers and have a better understanding of the pathogenesis of tickborne diseases in different people to make predictions about disease course and be better at preventing the worst symptoms. But that day is not today.

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  8. One more for Romina, then I'm taking a break...

    ".I joke sometimes that with this disease I know too much sometimes..and wish I didn't.."

    Keep that up. Learn more anyway, just don't let it drive you crazy. And by that I mean try not to think that every bad thing that you read that could happen to you because you have Lyme disease will.

    It's a tricky thing... I've seen other people fall into some fear mode where they think the worst is going to happen to them. It isn't helpful, and it generally makes matters worse because stressing about being sick pulls the immune system down.

    Joking and laughing at things is incredibly useful when dealing with an illness like this. It will see you through the tough stuff. Stupid movies that make you laugh and friends are a good prescription.

    "but I do and need to move forward no matter what the future brings with it. I do think the body is able to HEAL. I sometimes notice that when I ignore the symptoms, I don't feel as sad/depressed...and just go on, even if it is being fake or a mask that I wear. Sometimes not focusing on this disease and taking your mind off of it, does my body good."

    I think that with treatment, rest, and taking care of your body and mind, your body can do a great deal of healing on its own. And distraction away from your illness IS one useful way to cope with symptoms

    It's not going to work 100%. Severe pain isn't touched by distraction as much. But if you can try focus on something else, it will at least make the time go by a little less slowly when in it. If pain is unbearable, the only thing to do is call your doctor for advice or head to the ER and get checked out.

    But in general, yes, trying to ignore the symptoms or doing something positive for yourself helps. What has helped me? Hot baths. Distraction. Stupid movies. Sleep. Eating well. Coffee (I know some people are against it, but it helps my brain, in my opinion). Low maintenance and no drama company. Treatment. Research. Doing something that isn't all about Lyme.

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  9. I empathize with the author and echo the stated concerns. I'm an RN with a lot of ID/IM clinical experience, and have been disabled from what appears to be a late disseminated case of Lyme or something appearing to be.

    The lack of diagnostic discipline and critical thinking I have witnessed in physicians on both sides of this issue is appalling to my professional mind and disheartening to me as a patient who's looking for a clear middle road to take.
    I have to get back to work and take care of my family, but the cardiac and great vessel complications I'm experiencing leave me wondering if I'll even survive long enough to go on Medicare, let alone Social Security! If the choice is to either sit still and die or seek out a quack, then our medical community and regulatory agencies have let us down.

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