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?

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3 Commentary: Critical Mass In The Media On Lyme Disease

It's April, and it's already that time of year again for Lyme disease: The media has been stepping up its coverage of Lyme disease related news items in preparation for May, which is Lyme disease awareness month.

For example:
Health Department Issues Warning About Ticks (Ohio)
10 Tips To Beat The Ticks (msnbc)
Lyme Disease Is On The Rise In New Jersey And Pennsylvania
Arkansas On Track For More Tickborne Illnesses This Summer
Scientist Says Lack Of Acorns May Mean More Lyme Disease In Maine
Minnesota: State's tick season crawling to an early start
Tick bites on the rise in Central Florida, county says
Tick season gets an early start (Iowa)
It's tick season in Lake, Mendocino counties (California)

Canada has been getting in on the action:
How to prevent disease infection after research finds Lyme-carrying ticks are on the rise in Canada
Toronto: Climate change causes Mississauga infestation
Tick season is here (Kamloops)

And also the BBC in the UK:
Great outdoors? Ticks, pets and the risk of Lyme disease
Seeking to solve the Lyme disease puzzle

All these links are to articles I just grabbed off Google News in a matter of seconds. There are so many news items listed that I could not mention them all and just selected links representative of the fact that  Lyme disease is getting more attention across the United States and the northern hemisphere in general.  If I search further afield, I'm sure I could include links from France, the Netherlands, Germany, and other countries.

This year, I noticed that the news cycle has been slightly different. The media has been discussing that tick season was going to be earlier than usual and worse than usual when it was just barely into the new year. And with this has come more stern warnings to the public to protect themselves from tick bites and prevent infection.

The media has been on top of things, it seems. How about me? As someone who has suffered from Lyme disease and coinfection, I've been thinking about my own role in how to participate activities related to this year's Lyme disease awareness month.

Last May, I wrote a series of articles for The Daily Kos for Lyme disease awareness month. Time is obviously running out to decide whether or not to write again this May, and I am leaving the decision to the last minute just as I did the previous year.

I think traditionally calling attention to Lyme disease prevention in May has made sense. But I can't help but think that being aware of all tickborne infection throughout the entire year is a better approach.

One reason why is because the world is changing. Global warming and fluctuations in the ecosystem can lead to different tick breeding times and infection patterns. Local microclimates and winters which are milder on average can lead to peak cases of Lyme disease being reported in autumn and early winter - as they have been reported in California and parts of Oregon. And if Australia turns out to have its own increase in Lyme disease cases which run according to their seasons, then timing for prevention and education would differ from North America by six months.

Another reason why is that it doesn't hurt to put the message out there all year round is because more people are likely to hear it and be aware about the potential problems tick bites can bring before they are in circumstances where they are more likely to get bitten...Hopefully they won't get bitten at all.

Any month where people are going to be going outdoors and placing themselves in environments where they are likely to encounter ticks is a month where one should take the steps necessary to protect themselves from tick bites.

My own basic online version of tickborne disease prevention education
has been this page: http://campother.blogspot.com/2011/06/video-tick-removal.html

It has two videos - one an animation about preventing oneself from being bitten by a tick and another about how to create your own tick removal kit.

Overall, I think there is a fair amount of information available about prevention and avoidance of Lyme disease and other tickborne infections. And it's good to repeat this information and give people reminders.

The Fear of Taking It Too Far?

From my own personal perspective - after years of reading articles about the prevention and avoidance of ticks - I'm in a position where I'm trying to figure out what seems to be the opposite problem: how not to go overboard in preventing and avoiding tickborne infection.

And it is a good question: What exactly is going overboard when one has had their life changed entirely (and not in a good way) by having contracted a tickborne infection? Some people might argue there is no such thing as going overboard.

I know it's possible that some day I could be hiking and get bitten by a tick again. That concern is real. The fear behind getting another infected tick bite is real. And I have asked myself, "Do I really want to hike again?"

Hard question. But it's still difficult to say no. In terms of risk reduction, I would rather give up living with a pet than give up spending time outdoors.

I love the great outdoors, and I miss hiking and camping - two activities which put me at the most risk for tick bites. I'm not doing either these days due to fatigue, pain, and lack of stamina. But if I were to suddenly become completely well again, I would have to think twice about how I could return to these activities and remain unscathed by ticks.

There has been a sense of loss that comes from not engaging in activities I once used to do all the time.  Hiking was a walking meditation for me that worked better than sitting in a crowded room full of people doing yoga poses. And cheaper, too.

Out in the woods, I could be alone with my thoughts and close to the earth. I could get in tune with my body and push its limits without anyone watching. I could stretch my muscles, climb rocks, and see how far I could go.

Today I feel weak and broken. I miss feeling stronger. I miss being out in nature, in the elements, encountering wildlife.

I also miss sitting near a campfire, eating and drinking with friends while telling tall tales and bad jokes... It's amazing how much I took for granted that I now miss.

I've figured out that there are things I could do to ease back into the activities I love to do while lowering my risk. I could focus on cycling, swimming, sailing, canoeing, scuba, urban walks, and hiking and camping in rocky mountainous and desert areas where ticks are far less likely to be encountered. It might take more advance planning to do some of these things - but time outdoors wouldn't have to stop. Activities may just need to be modified to alleviate my concerns.

But all this is only going to happen once I am well enough and have energy enough to do these things at all.

Shifting From A Narrow Focus On Fear Of Ticks To Action On Chronic Lyme

From where I sit, I think the awareness message has to be broader than "ticks are out there, they carry nasty infections, protect yourself from their bite"... I think the message has been getting out there, little by little, that if one does get bitten that early diagnosis and treatment is crucial.

But the bigger message which has to get out is that more research on preventing and treating late stage chronic Lyme disease is needed because this is the one aspect of Lyme disease which is the most damaging (and controversial) of all.

The science needs to be brought to public light from those who are up to their ears in it. I'd like to see more researchers being interviewed and not just patients. I'd like to see doctors discussing how much - and how long - these infections can affect one's quality of life. I'd like to see various people discuss the Embers' study on national TV. I'd like to see someone have the balls to actually discuss whether or not there can be a persistent infection in Lyme disease and mention all the studies which have been done to date on both - or rather, all - sides of the fence. I'd like to see a genuine open scientific debate.

I see it as I call it, and how I see it right now is that the dialog about Lyme disease needs to be taken past the human interest story and past the public health department's annual warnings about increasing cases of tickborne infections. A good move in this direction has been discussing the impact of global warming on the spread of ticks. An even better move would be to discuss what we can do to stop the most serious impact that Lyme disease has on us, our families, and our pets in the form of chronic and persisting symptoms.

A call for more research is needed. A call for more young people to study microbiology and immunology to better understand tickborne infections is needed. A call for more surveillance in new latitudes is needed. A call for more detailed public education on Lyme disease is needed. And a call for more serious candid discussions from the media - and not just daytime TV sensationalism - is needed.

How do we get from here to there? If I have any role in this, then it's going to have to be directed towards answering this question - whether it's May or not.

Image credit: © Jarek Tuszynski / Wikimedia Commons / CC-BY-SA-3.0 & GDFL

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0 Commentary: Antibiotics Are Only One Tool - I Want Others.

A few weeks ago, I commented on a Wall Street Journal blog post about chronic Lyme disease. Since then, I have been reflecting on this response to my comments there:

"Camp Other – The cure for chronic Lyme is known. If you want a sustainable, long term cure, you can gamble on long term antibiotics, or can you take an alternative approach, which consists of doing between 20 and 50 different things, including Low Dose Naltrexone. Yes, they get you to a cure, at which point a good alkaline diet, oxygenation, vitamin D, etc etc etc should maintain health.

 Easier said than done though. Even when you cure your Lyme, you need to maintain the healthy diet, and some of the supplements that got you there. You also want to do genetic testing for things like methylation, as part of treament and post-cure maintenance. I’m certainly not banking on the Viral Genetics research. It could be many years before that turns into a drug we could take. I already know people who are fully cured and back to their old lives, so it is curable with current knowledge."

And I also sadly know people who are not fully cured with current knowledge.

Reflecting on this, it's not an easy statement for me to make - but I don't think the cure for chronic Lyme disease is entirely known.

If it were known, then all the patients I know would have had the treatment they needed and would be better now. But some of them are not. And I don't think it's some personal failing that they aren't or that they haven't done the right things - it's that their individual condition is different and may require different treatment - including treatments which haven't even been developed yet.

I can see that long term antibiotics, some alternative medicine, or some combination of the two have helped a number of people improve their condition and alleviate symptoms. Many have gotten their old life back. But it's never been guaranteed that any of these treatments will work for everyone.

 Even the Lyme disease patient support groups have often repeated the statement, "Every patient is different," and Polly Murray herself stated in her book, The Widening Circle:

"I am struck by how Lyme disease never seems to act exactly the way it is supposed to, how each individual seems to respond differently to the spirochete."

I'm a fairly pragmatic person, so my basic position on using antibiotics to treat persisting symptoms related to Lyme disease has been that if they might offer relief and improve your quality of life, if nothing else has helped, and a doctor has agreed to this treatment - then try them. Use them, while being aware that there are risks in taking them longer term - and note that perhaps there are even unforeseen consequences of which scientists are not yet aware.

But while I've been an advocate for the use of longer than standard courses of antibiotics in the subset of patients with Lyme disease who have persisting symptoms and I feel they saved my life, I have never wanted that to be the end of the story. Because it seems to me that even if they do help, if they don't cure everyone then more research is needed for effective treatment which helps all patients.

If there is evidence that comes out of Embers' Rhesus Macaque study - along with others - that Borrelia burgdorferi s.l. does have a persister cell phenotype as part of its pathogenesis, then more antibiotics may only be a maintenance treatment at best. What would really be needed is a treatment which reactivates the dormant persisters and kills them - something which antibiotics alone cannot do.

Persister cells are tolerant to antibiotics. So in theory, it may be that antibiotics of some kind plus a metabolite would be needed to eradicate any remaining spirochetes.

In the long run, I'd like to see more effective, less expensive treatments of shorter duration for my condition.

I'd like to avoid taking antibiotics out of concern for my poor digestive system and my palate, which is disgusted with bitter tasting substances rolled into barely swallowable pills in general.

I'd like to avoid the strange side effects which I have experienced which, thankfully, in most cases abated after the first week or two of treatment - yet they inexplicably seemed to be those which are less common to experience and more difficult to cope with.

Antibiotics are great tool and have helped a great number of people - and they have helped me, too. But I think it's time to look past long term antibiotics alone and push for research on other avenues of treatment.

Researching them doesn't mean abandoning antibiotic use entirely - they are scientifically proven effective against Lyme disease and its coinfections. Researching other avenues means investigating what else can be done to help patients improve their quality of life and to find something that could cure them in less time. It means exploring more options, not fewer. It means more patient freedom, not less.

 If at one point I seemed to strongly advocate Viral Genetics' VGV-L candidate for the treatment of chronic Lyme disease, it isn't because I am certain it will work. I don't know for sure that it will. I am hoping, though, that it will help at least some portion of those of us suffering and will not have serious side effects.

And I'm hoping it marks the beginning of more research into different ways to treat patients who are suffering with persistent symptoms. The antibiotics will still be there if you need them - and after how much of them I've already consumed, I'd rather not need them. I'd like to try something else if I can. A round of Buhner's herbs, perhaps - or perhaps something entirely new.

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12 A Personal Note From A Fellow Lyme Patient

I was going to work on a page about the Lyme disease controversy which incorporated some of the discussion about Embers et al Rhesus macaque study on the Lyme Policy Wonk blog or post something about how Viral Genetics' chronic Lyme disease treatment is supposed to work.

But I've decided for now to set that aside because now I have something to say about something more personal.




Recently, someone mentioned me online in a Lyme disease support group forum and stated that my ability to knock out 1,000 word rebuttals and look up all this research made other people with Lyme disease look bad.

I took exception to that statement, and disagreed with it.

It wasn't all that long ago that I wasn't even able to write and do research, and it wasn't until I had been treated for Babesia by my LLMD that I began to see a difference in how quickly my mind worked.

When this change took place, I wanted to take advantage of it.

I felt compelled to write and do research because I finally could do so again and I was afraid I would relapse again any day. I feared I would return to some muddy primordial brain soup that couldn't string other people's sentences together and would put down a book after two minutes of frustrated repetition that looked like reading but really wasn't.

Relapse when? Who knows. I'm still afraid of my old symptoms returning and losing ground. Relapse happened to Pamela Weintraub. Relapse happened to others. And I've already relapsed once from about 85% of my original baseline.

I was so close. So, so close to feeling normal again. And then I lost what I had gained.

I'm not 100% now and I'm not at 85% again - however, I'm still better off than I was over a year ago.

This writing I do here and other places online? It isn't a game to me. At times it has been a genuine challenge. I've done it while having headaches and muscle pain and joint swelling. I've done it in the middle of episodes of fatigue and to avoid standing up due to vertigo. I've done it at 3 am. I've done it after waking up after being crashed out for hours because I'd been in the ER all night.

It's true that I do a lot of research. And it's not hard to do because it's what I used to do for a living. To some degree, it's force of habit and was easy to return to once I was able to understand what I read again. And I'm trying to reeducate myself and learn new things so that I have a better understanding of what I write and share with you.

But just because I do this does not mean I am capable of returning to my old job. Even if I can read and write, my health is so unstable that employment has not been possible during this time. Employment requires stability.

My brain - while functioning in some ways - is not fully running on all cylinders in others. It's just not obvious how it isn't to someone who isn't living life inside my skin every day.

Care for the rest of me outside my brain can be time consuming.  Case in point: I just looked on my calendar for February to see how many appointments I had. If you add it all up, I've had 5 appointments for different health problems - either to follow up on an already existing condition or to check up on a new one.

Many if not most of my friends without Lyme disease haven't seen a doctor within the past year.

That used to be me. Not any more.


When it comes to blogging online, I think it's a great thing: In some small way, this has been my slice of "normal". No one could see how impaired I have been and how bad things can be.

Perversely, having my capability for research and writing online being pointed out by a near-total stranger is satisfying: It means that I pass as being more normal than I truly am to someone in a world where the dominant paradigm of normal = healthy - even when I'm part of a community where it's normal to not be healthy and one faces challenges daily. But it can be demoralizing and confusing to read the accusation attached to it that my doing my best is somehow reflecting poorly on others.

I'm not doing research and writing about Lyme disease to make other patients look bad. I've been doing it because it's one of the few things I've been capable of doing from my sofa during the past year. 

I've been doing it because I want to learn as much as I can about this disease and topics related to it.

I've been doing it because maybe what I learn and share with others can help them, somehow, in some small way.

I've been doing it to educate people about Lyme disease and other tickborne illnesses.

I've also done it because it keeps me saner than I otherwise might be after all I have been through. It distracts me. It gives me a goal to live for other than to drag myself through another appointment, another blood draw, and another tedious stack of paperwork.

I've been trying to do something positive with the situation I've been placed in against my will, and implied assumptions about my health and reasons for writing long rebuttals or doing research are about as useful to hear as hearing a statement such as "those with chronic Lyme disease only suffer from "the aches and pains of daily living" is useful to hear: It isn't.

And when it boils down to it, a remark about my being a bad example for knocking out long posts online doesn't even make sense to anyone when so many other patients - including ones with other medical conditions which are disabling - spend at least as much time reading, writing, and posting online as I do.

If I've actually improved - if I've actually been doing better than I used to be doing - that is a good thing. When anyone else shares the news that they are doing better, I tell them I'm happy for them. I don't tell them they set a bad example. That doesn't make sense.

A lot of us struggling with disabilities are in the same boat. Former lives are broken and may not come back together the same way again. It sucks, all the way around.

I don't know what the future holds.

In the meantime, though, I am going to make good use of this time to research and write if I can, and do the best I can do at what I'm capable of doing.

How can anyone salvage something out of this situation? You do the best you can.

I encourage you to do likewise. Life is short.

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0 Phage-holder

Rather than use the term "placeholder" I decided to use "phage-holder" because this post is going to be all about bacteriophage and phage therapy.

First, I came across this Nature blog post from Jim Caryl from last April - "No action today, no antibiotics tomorrow..." It outlines the serious problem of growing antibiotic resistance to infection and proposes different technological solutions for combatting resistance.

Jim advocates the revamping of our current drug manufacturing system to produce new antimicrobial therapies based on new targets as well as remodeling old antibiotics with high toxicity so that they are less toxic. He is not as enthusiastic about the application of phage therapy, citing a need for more efficacy testing and double blind random control trials. Those who commented on his blog, though, are strongly in support of phage therapy and think it has much promise.

 If you are a Lyme disease patient (or care about someone who is) then his fourth item on his anti-microbials-of-the-future list may interest you - if the data is there to support persister cells as part of Borrelia burgdorferi's pathogenesis:

"The current model for drug discovery is towards drugs that interfere with actively growing bacteria, however, bacteria aren't always actively growing. I've written before about how being in a different growth-phase can render a bacterial cell resistant to antibiotics. This can lead to repeated flare-ups of the infection until, eventually, true genetic resistance evolves that allows the bacteria to survive, and continue growing in the presence of the antibiotic. Thus there is the proposal that as part of enhanced efforts in drug discovery, that a platform for developing drugs at slow- or non-growing bacteria be practised."

Check out Jim's well-written post, and check out the comments.

Second, I periodically see what's new in terms of phage therapy education and outreach in the United States - and in particular, drop by Evergreen State College's (ESC - Olympia, WA) pages on bacteriophage research.

If you take an interest in learning more about phage therapy, this is a good place to start for an English-language based repository. On ESC's web site you can learn about phage research around the world, including at the well-known Eliava Institute in Tblisi, Georgia - and there are interesting links such as one to a new journal, Bacteriophage, the first international, peer-reviewed journal dedicated to all aspects of bacteriophage research, ranging from basic phage biology and taxonomy to advanced bacteriophage-host cell interactions and various practical applications of bacteriophages.

If this is really your thing, you might want to prepare for the next International Phage Biology Meeting in 2013, with more details  about this meeting to be announced here in the future: http://blogs.evergreen.edu/phage/

Third, little late to the game on this one - but I have news on the business side of phage therapy in the United States. I discovered the web site of this company, Amliphi Biosciences Corporation, which states "AmpliPhi Biosciences is the first company to demonstrate the clinical efficacy of phage technology in a controlled, regulated, human clinical trial."

While their focus is on researching bacteriophage therapy for resistant Gram-negative bacterial infections, there is currently no development underway for Borrelia burgdorferi infections (which if you'll recall is not exactly Gram-negative bacteria anyway). But the research they are doing may improve and save the lives of many people struggling with resistant bacterial infections such as children suffering from chronic ear infections and adults suffering from cystic fibrosis. In fact, AmpliPhi is receiving initial funding support from Cystic Fibrosis Foundation Therapeutics, Inc. (a nonprofit affiliate of the Cystic Fibrosis Foundation).

Check out their product pipeline page to learn more about the clinical trials they have been conducting on phage therapy for helping people with these conditions as well as for other purposes.

Last but not least, I wanted to announce that one of my own pages on bacteriophage will soon be updated due to a major oversight that was called to my attention through my recent exchanges with Dr. Alan MacDonald on Lymenet Europe. He posted some images of Dr. Alan Barbour's early research on Borrelia burgdorferi where a B-3-like phage was found on and in spirochetes (Why are there so many Allens or Alans doing research in this field?). This is research that definitely should have been included in this page and I am very remiss in not including it.

I also realize that part of it needs rewriting in general because a few basic concepts about how phage therapy works need to be included - including the fact that each phage is often very strain specific. My current writing suggests to the reader that one phage will handily kill all Borrelia burgdorferi when that is not so - though a genetically modified virus which attacks Borrelia might be altered in such a way as to inject different Borrelia with something that is disruptive to a common Borrelia target. Phages "in the wild" do not operate in this fashion - they are found and they evolve on their own and are strain specific. So expect this page to be updated to include this information soon.

One may wonder why Camp Other is so interested in bacteriophage therapy. The reason is simple: There may be some way in the future to detect which strains of Borrelia someone has been infected with at the site of a tick bite and develop a phage-based ointment that will prevent infection from disseminating. It will do so without the problem of antibiotic resistance cropping up and without all the horrible side effects that antibiotics can bring including the risk of contracting C. difficile.

So I would very much like to see this be made possible, though there are inherent difficulties in finding lytic phages for Borrelia and the issue that "handedness" ("male"/"female") of the bacteria is related to finding effective phages, much like the "handedness" of sugars has different effects in the human body.

This work by Camp Other is licensed under a Creative Commons
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21 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 2)

Note: The content that follows is part two of a personal rant and is atypical of most content as well as context covered by this blog.

This is part two of a two part rant. Part one can be found here: http://campother.blogspot.com/2012/01/rant-why-dealing-with-lyme-disease.html

To continue where I left off, and to share other reasons as to why dealing with Lyme Disease drives me crazy from a patient's perspective:

7) Because the organizations and institutions which have the most influence on treatment and research for my condition are engaged in a political battle of the wills where if "you ain't with us, you're against us". It's a position where being in the middle is difficult at best.

Most patients with persisting late stage untreated Lyme disease and those with post treatment Lyme disease have voted to stick with ILADs doctors and other non-ILADS LLMDs for treatment, and support the organizations and advocates which support ILADS and other LLMDs. They think that a chronic infection is the cause of patients' persisting symptoms.

Most chronic Lyme disease patients and advocates view the IDSA Lyme disease guidelines group as being highly restrictive in terms of treatment of their disease, and not only that - think that the IDSA Lyme disease guidelines group does not care about patients and only cares about profit. The IDSA guidelines group thinks that some autoimmune condition is the cause of patients' persisting symptoms.

One segment of the chronic Lyme disease patient population has grown a general distrust of scientific researchers and allopathic medicine in general. This growing group of patients voices its dissent against not only the IDSA - but any group which may be viewed as profiting off of those with chronic illness in some way: The FDA, pharmaceutical companies, government and non-government researchers with patent rights to their technology, grad and post doc microbiology students, and then some.

Watching all this go by and unfold,  the position I'm in is that because I am not interested in completely aligning myself with any one of these groups in this battle, that I have been viewed by some patients as not being loyal enough to the chronic Lyme cause and not loyal enough to supporting alternative medicine. And for some small portion of my readers,  I'm not loyal enough to the hypotheses about chronic Lyme disease which the IDSA espouses, either, because I have this seemingly odd idea that some people may need more than the standard amount of antibiotics set out in their guidelines.

Because of this, sometimes I have not been able to get the support and understanding I need as a patient from other patients going through the same thing - presumably because they view me as fence sitting and it makes them feel distinctly uncomfortable. Heck, last year I was even banned from participating on one Lyme patient support group - so I have a sign that at least to some people, I'm not welcome.

But I'm not here to make people feel uncomfortable. It's not what I want to do, though I acknowledge that some of what I write may bring up uncomfortable feelings. What I do want to do is figure out what the truth is in this area full of conflict and get a greater sense of it. Move past any ideological conflict and look at the science. This is why I do research and try to avoid what all the pundits are saying - whether they are pro or against something - whatever it is.

I think that what causes persisting symptoms in patients is not a one answer deal, after all the research I've read. It's not that simple. And I wish that all of those involved in the study and treatment of Lyme disease would come forward and say that, and admit that they do not know what the best treatment is for everyone.

We need a different starting point than where we've been gridlocked over the treatment for the past two generations of Lyme disease patients. Why can't more people consider that those with persisting symptoms may have them both due to persisting infection as well as changes to the immune system? Or that the cause may differ in different patients? Do more research into how different strains of Bb and genetic backgrounds (e.g. HLA-DRs) of patients influence outcomes?

Two of the most supportive and outspoken figures in the Lyme disease community see the need for middle ground as I do - Pam Weintraub and Dr. Brian Fallon. I think we need more middle ground to be covered if we're going to make any progress on understanding chronic Lyme disease and getting better treatment for it. More research is really the key. More fighting over cause is not.

8) Because parts of the mainstream media continue to sensationalize this taking of sides and fails to examine and share all the scientific evidence available (and areas where evidence is also lacking on either side) about my condition, it contributes to the growing problem of scientific illiteracy in this country. It also contributes to dismissive attitudes towards patients with my condition.

I don't know how to say it enough or loudly enough to be heard: The Chicago Tribune's article, "Chronic Lyme: A dubious diagnosis" is exactly the kind of journalism that fails to address the issue of chronic Lyme disease from a scientific perspective.

I spent a fair chunk of my time deconstructing the article and pointing out how it was about two doctors' disciplinary records and flawed alternative treatments for chronic Lyme disease - rather than about whether or not Lyme disease could actually be a chronic infection. That issue is never really discussed throughout the entire article when one would think that based on the title that would be exactly what it would have been about.

Whether one believes chronic Lyme disease/post Lyme disease syndrome is caused by a chronic infection or not should not affect the fact that patients are suffering from a condition which is not "all in their heads".  Articles like the above characterize doctors and patients in the worst light without getting the full picture or an accurate one, while simultaneously failing to examine, state, and challenge the range of research on the disease itself. Anyone reading that article would walk away not having learned more about Lyme disease in general - let alone any reason why some people may think it can be a persistent infection and other people think it cannot.

This article is not the only article or the first article to become a meal to feed the trolls. There have been others. And because so many of these sensationalist articles have been printed, they have made it more difficult for the public to take my condition seriously. A condition which - as you may recall - an academic researcher said that at its worst was equal in severity of symptoms and lack of functionality in patients with congestive heart failure.

9) Because having my condition has been life changing and entirely game changing for me. All the plans I had before I got ill have been completely trashed. Many opportunities I would have said "yes" to I ended up having to turn down. And as such, for a number of these plans and opportunities - there are no second chances.

This is the same story that many people could say about other conditions, I know: Car accidents leave people with injuries and disabilities that can affect them for the rest of their lives. Cancer and many chronic conditions can affect people for the rest of their lives, too. Someone with my condition shares this much in common with many other people. And we might improve; we might not. No one knows.

That said, I can not easily describe just how much I have lost to my condition and complications related to it. Lost income and the loss of my career and the ability to work, lost opportunities to travel and go hiking in the mountains, lost time spent with friends and family because of illness preventing me from participating in events, lost positive life changes such as buying my own home and filling it with the things I want... all of these things and more have happened to me and many other people.

But these are the big things. Sometimes even the small things can be a noticeable and painful loss. Not being able to wash my own back put me at an all time low when it happened.

10) Because just living with my condition and all the symptoms it causes is crazymaking, and few people really understand it.  They don't "get it". Seeing someone with a broken leg makes it clear to someone else that something is wrong and what their limitations are - seeing someone like me makes it clear as mud what is wrong and what my limitations are. And things change from day to day.

This is a more difficult thing to explain, and perhaps some of it can be better articulated by web sites about invisible illnesses. My own attempt at it is to say imagine that you have a splitting headache almost constantly, have trouble taking full breaths day and night, your muscles ache - and ache worse with any repetitive motion, even after a short period of time, and your joints ache all over your body. And no one can see the pain you are in. At most, they can see you are moving more slowly than they would be. But other than that - you appear normal to them.

And tomorrow, those symptoms might change. But still be limiting and make you dysfunctional in different ways.

This is a small snapshot of how life has been for me. Sometimes it's better, sometimes it's worse. But if it weren't for walking around with a cane or borrowing a scooter to get around, a lot of people may not see that anything is wrong with me. Someone with a broken leg has the benefit of an obvious visual sign they are messed up. I don't. And because of this, some people have either forgotten I'm not well when they next see me - or worse, don't believe I am unwell in the first place.

And if I am at home in bed? That's a truly invisible illness - out of sight, out of mind.

That is its own problem: lack of external confirmation and validation of my condition.

Another problem related to this is my not knowing what to expect from my body and to expect from myself from one day to the next - and sometimes one moment to the next.

I may be able drive to the doctor's office, the hardware store and grocery store and come back home and still have the strength and energy to do something else the same day. I may not, and have trouble getting out of bed at all. On those days - if I get back and forth to the bathroom - that's my travel for the day.

Attached to that is a host of problems around how difficult it is to make plans and keep them, and the economic, social, and other costs that come with poor follow-through.

I feel alienated about living in my own body. It doesn't cooperate with what I want and need to do. And at times, the pain, fatigue, and isolation are hard to bear. I hurt. I've lost sleep on many nights because pain kept me awake. I've had to struggle through that pain alone, and wished there was someone to keep me company through it - yet at the same time, did not want to subject anyone to my misery.

Sometimes I don't even want company - and the funny thing is, during those times I don't like my own company, either. I become a total ass. I find my own ruminations while ill to be counterproductive and leading down the path to a dark and deep sense of hopelessness, one where there is no point in making plans for the future because I'm likely not able to keep them anyway. Serious depression here.

And even when I reach a stretch of acceptance of my condition and its limitations (and there is acceptance, but it's part of an ongoing process where it is revisited and not a destination where I can park),  living with it is still so damn HARD...

When I am around other people, I feel like the ghost at the table. I am there, but mentally and physically not solid. I can affect things, but only indirectly and weakly compared to one's normal human form. I can hear people and engage in conversation with them, but from my own perspective it always seems as if there is a thick layer of atmosphere I have to communicate through where speaking requires extra force to push the words out of my mouth and listening is like trying to decipher the words of people talking underwater. All of this communication takes extra effort I never needed to make before I got sick. I never would have even imagined one could get sick in such a way that normal social interaction would be draining. This is what chronic fatigue and brain fog are like. I didn't know it until I got it.

This is hard on an extrovert, and over time I've had to become more and more introverted in order to cope and adapt to my condition. I "don't have any spoons" to be the energetic and engaging person I used to be. I don't have it in me. Only a few people close to me are lucky enough to see a glimmer of my former self for brief moments of time.

In a very real sense, my condition has robbed me of being me. Which is one of the highest insults I can imagine any condition causing to anyone. I've been forced to become someone I do not want to be because of my condition. How sucky is that? It's pretty sucky.

So this is the end of part 2 of why dealing with Lyme disease drives me crazy. Maybe there will be a part 3 sometime in the future - I don't know. For now, I'll leave it at this.

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0 Poll: Cause Of Post Treatment Lyme Disease Symptoms

A couple months ago, a non-scientific poll was placed on the site which asked readers to select from a number of choices for what they think causes post treatment Lyme disease symptoms: persistent infection, an autoimmune disorder, b-cell dysfunction, all of the above, and none of the above.

During the two months the poll was open, only 18 votes were cast by readers who were given the option to select more than one response. 

This time, the poll will be open again with the same question - and in the interest of collecting more votes,  the poll will be open to voting for one year. Also, additional choices will be given (molecular mimicry, metabolic disorder, and immunosuppression) for readers to select. After the poll is closed, the results will be reported and further discussion of each of these choices will go on.

As it stands, of the 18 responses given in two months' time from the old poll, 10 responses stated that post treatment lyme disease symptoms are caused by a persistent infection, 3 stated that they are caused by an autoimmune disorder, one stated they are caused by a b-cell dysfunction, and 7 stated they are caused by all of the above.

We'll see what kind of responses are received on the new poll as time goes on...

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11 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 1)

Note: The content that follows is part one of a personal rant and is atypical of most content as well as context covered by this blog. 

I've been meaning to write this entry for a long time.

Many attempts have been made before this - many which have been scrapped because they neither met my general standards for publication nor managed to convey what I wanted to express.

 But I have to get it off my chest because face it, I've been dealing with this condition and its complications for years now and every so once in a while I've gotta just let it all rip, Camp Other style.

Why Dealing With Lyme Disease Drives Me Crazy

Where do I even begin?

Let's start with the more obvious, from a patient's perspective.

1) Because the lack of early diagnosis and treatment occurred for something which should have been obvious to not only the first family doctor who saw me - but the second one. 

I had a textbook case of Lyme disease: EM rash, history of a tick bite, and symptoms consistent with a Lyme disease diagnosis. I knew the geographic location in which the tick had bitten me because I found the tick within a day of hiking in an endemic area. The state health department and university researchers knew it was an endemic area.

The index of suspicion should have been high, but I was treated dismissively and told that Lyme disease doesn't happen in my state or the area in which I'd been bitten.

Admittedly, I myself did not know how endemic the area was for Lyme disease until after I received my bite and went to my first doctor's appointment. It's after that point when I decided to look it up, and discovered the doctor had made a mistake. People are human and doctors are human and make mistakes, but for me this has been a very costly one - the doctor I saw should have known more about surveillance and epidemiology in the area than I did.

The second doctor had an opportunity to see my larger than 5 cm expanding rash and still thought I just had a sinus infection. When I brought up that I thought I may have Lyme disease, the doctor ran an ELISA -  but this testing was too early to show an antibody response. What the hell, I already had an expanding EM rash - I was treatable on that count alone. Again, a sign of ignorance about the disease, even from a basic IDSA/CDC/State health department point of view.

After having read many other patients' stories about having had a similar experience, I can only suggest that doctors need more education about tickborne diseases and to be more vigilant about immediate treatment as the risks of early treatment are far less than managing complications that come from disseminated and late stage infection.

 2) Because of the lack of a timely and accurate diagnosis and treatment by a family doctor, I ended up seeing an LLMD for diagnosis and treatment.

After my initial research of Lyme disease, of course I came across information about the controversy in Lyme disease and both information singing the praises of LLMDs and how they saved patients' lives as well as information condemning them for their overpriced fees, lack of taking insurance, rude support staff, difficulty in getting appointments, and unproven protocols. I heard both sides from patients. I also got to hear criticisms about LLMDs from some science writers and medical professionals about how their diagnostic and treatment methods were not well supported by science and that LLMDs were only out there to take advantage of the gullible.

I got an earful early on, believe me. But despite hearing the negative reports, I still found myself in the position of having to make my own decision as what to do next and soon, because I was so sick.

I had to do something. I could barely think straight at the time. I was so ill I could barely follow someone else's conversation. I could only read in very short spurts. I was exhausted, in pain, could not work, and could barely take care of myself.

I had to network with people and figure out what I was willing to do. I had to rely on others' suggestions and concerns more than I usually would simply because I had trouble thinking straight. It was rough going.

In time, I realized not all LLMDs were cut from the same cloth and I already knew why I was sick - so controversy or not, I was going to go where I knew someone would help me. If an LLMD was going to treat my Lyme disease and the doctors I'd seen at my supposedly highly rated clinic weren't, I was going to see an LLMD. Simple as that.

At the time, I didn't want to get involved in the controversy at all - even as I felt sympathy for everyone dealing with long term symptoms. I thought that as long as I was treating this infection early that I would be one of the lucky ones - I would take antibiotics for 3-4 weeks and not have to face persisting symptoms.

However... I was wrong. Only I didn't know it at the time. My infection disseminated fairly quickly early on and I was already sicker than others who had acute Lyme disease and received treatment early. I developed symptoms of a coinfection later on that I would not have known to look for or even suspect. The LLMD did suspect this coinfection, then ran tests - for which I was positive - and as a result, I was treated for it and my symptoms improved.

I am still in less pain than I used to be and some of my symptoms completely disappeared from this treatment, so I think there were measurable gains and seeing an LLMD for treatment was the right thing to do when I did it. I genuinely had Lyme disease to begin with - and if two other doctors were not treating it - then someone else damn well was going to treat it.

My question is why did I have to see an LLMD for all of this when a well-trained family doctor should have known from day one what was wrong with me and treat it back then?

Maybe in my case, weeks or a few months of not having treatment or having inappropriate treatment made all the difference in the world for my outcome. The earlier the better, they say. And I could have had that and sidestepped this mess had the family doctors I'd seen earlier on knew what they were looking at and got right on top of it.

3) Because for some reason, having a Lyme disease history is either not calculated into any new symptoms I present to most doctors (both family practice and emergency medicine) and each symptom set I experience is either attributed to something entirely new and separate - or I am told that there is nothing the doctors can do for me (not even palliatively).

Again, I see this response as a lack of education of the doctors in question. I think that doctors have to take into account that even if they themselves do not believe in a chronic infection model of Lyme disease which the Lyme disease patient community supports - that they need to at least consider that the patient in front of them with a history of Lyme disease may be suffering complications related to having had the infection, and to consider the possibility of a coinfection or relapse of a coinfection where symptoms appear to overlap.

If Babesia is a growing problem in our national blood supply and has killed people through transfusions, it seems important to me to rule out Babesia in patients whether they have a mild presentation or a serious one. The risk to everyone's general health is involved.

Sometimes I think it is not just a lack of education which prevents family doctors from dealing with Lyme disease patients. Sometimes it's a matter of fear of not having enough expertise and making a mistake, and not knowing to whom one should refer a patient. If family doctors were better trained to begin with, though, then they could gain that expertise themselves and be the front line for diagnosis and treatment as most patients expect them to be.

Other times, I think part of the issue is that some doctors have decided to overgeneralize about what they read from various medical journals, letters, and reviews, wherein the author states that at least half of those patients claiming they have chronic Lyme disease never had Lyme disease in the first place. Once having digested that nugget, the doctor then may go on to think that a patient who tells them they either have or have had Lyme disease that because it's at least a 50/50 chance the patient never had it in the first place that it is data not worth considering.

Given the growing number of documented Lyme disease cases reported to the CDC annually, I'd like to suggest to these doctors that they nip that thought in the bud and just look at each patient as an individual and consider that their Lyme disease history may play a role in their current symptom set. They don't even have to enter into the controversy to go there.

4) Because of the changing face of the medical profession and doctor-patient relationship in an era of managed care, anyone with a chronic or hard-to-define illness is getting shortchanged these days - and sadly, at times readily receiving a mental illness diagnosis when the evidence for one is weak at best (or at least not the primary cause of their symptoms). 

After reading many different patient forums - not only for Lyme disease, but for conditions like fibromyalgia and CFS/ME or even rare, orphan illnesses which most people do not know anything about - I've seen this happen time and time again: Doctors trying to nail down a diagnosis for a patient within that 10-15 minute appointment window, and when there seems to be "too much going on" for the patient, the immediate suggestion by the doctor is that the patient's condition could be psychological.

Now, I acknowledge that a number of physical symptoms are related to depression and anxiety, as well as chronic stress. And if one is suffering from these conditions, they need to be recognized for what they are and receive proper care. However, I think some doctors are too quick to make this judgment and need more time to listen to patients and create a list of non-psychological physical, endocrinological, infectious, and/or immunological disorders and conditions to test for first before referring patients to a therapist.

Or if the person is obviously psychologically ill, to at least consider a biological basis for that illness or that it may be contributing to it. There is no reason not to run tests while referring one for therapy just to deal with the frustrations of being ill, either - and a caring, compassionate doctor will know how to finesse the situation so that both physical and mental bases are covered without being dismissive towards their patients.

For what it's worth, my family doctor has not diagnosed me with a mental illness. I myself have sought out therapy for depression while dealing with illness - and of the two therapists I have seen, both have told me to keep talking to doctors because it's their assessment I am physically ill and disabled and any depression I have stems from my health - not the other way around.

The biggest problem I have had with being told "it's all in your head" came from ER departments who could not figure out what was wrong with me in the handful of hours that I was there.

5) My treatment has not led to a full recovery or even closer to a life where my symptoms are stabilized.

Some patients within the Lyme disease community have gone off on me for what I'm about to say, but it's an honest assessment about where I am: I have come to accept that I may never regain my former health again and be 100% cured of the symptoms I'm having.

I don't have any expectations that I can return to my old life and do what I used to do and have the same amount of energy I once did. Even if I could be assured of being cured now, there may still be residual damage in my body - plus I am getting older and my body has been deconditioned by years of nearly total sedentary living.

At times I have felt like I've been fed a false hope that I could recover 100% from treatment, because I have certainly tried a lot, above and beyond what the original IDSA Lyme disease treatment guidelines stated. I have not fully recovered, and it's already been several years since I was first infected.

While I do what I can within my limits to try to stretch and improve my health to the degree that I can, I'm aware that there is so much that isn't known about or understood about my condition that it doesn't seem unreasonable to me that I may not get back to my previous state of health before the tick bite.

About the best thing that has helped me was Mepron for Babesia. It helped take care of a number of the most debilitating symptoms I've experienced. But everything else has either resulted in temporary gain or made me feel so much sicker for a longer period of time - that for months at a time, I actually feel much better doing nothing at all.

This is not to say I will never try anything again. It's to say that I want more evidence that the next thing I try is going to make a positive difference and have a good idea of why and how it is going to make a difference. But it seems to me that as time goes on, I still have bad days and less bad days and occasional good ones regardless of what medications or antibiotics I'm taking.

My experience leads me to believe that I either have permanent damage or long term damage that will take years to heal - or that the proper treatment for my condition has yet to be discovered. This is one key reason why I think more research - particularly treatment trials - is important.

6) Because there is a lack of societal and institutional support for someone suffering from my condition, as well as the lack of a streamlined process for acknowledging and supporting how my condition disables me - a condition which should receive official recognition as a disability.

Mainstream medicine has societies for cancer research - multiple societies including ones for specific cancers. It has workshops and support groups for cancer patients. It has programs on nutrition and cooking for cancer patients on site at hospitals and clinics. There are large scale races for the cure and other fundraisers. There are conferences on cancer which some patients are invited to - and some not. And there are many oncologists and oncology staff members and therapists who specialize in dealing with the issues cancer patients face. So on an institutional level, the need for support and education for cancer patients is recognized and accommodated.

When it comes to other doctors' attitudes about oncologists, they do not envy their jobs and have respect for the difficult job they have to do. Being a family doctor, you are more likely going to see minor problems you can fix and not have to watch someone die of cancer before your eyes.  So there is a certain amount of personal and professional respect from many doctors towards oncologists just because of what they have to deal with on a daily basis.

From the perspective of someone who has had post treatment persisting symptoms of Lyme disease (however you name or characterize my condition) I have felt marginalized and that the kind of support I could use has been lacking.

There is nowhere near the infrastructure available for someone with my condition that there is for someone with cancer. If it weren't for some online forums, a few LLMDs, and a few organizations that bend over backwards to recognize that my condition is debilitating - there would not be anyone at all to acknowledge and validate my disability.

I deal with a condition where the doctors - LLMDs - who try to treat patients like me do not receive respect from a number of other doctors, some researchers, and some members of the media. And as patients we will continue to see these doctors not because we are gullible - but because they are actually trying to help us.

If those whom disrespect them have an issue with this, then instead of knocking the doctors who see us and the treatment we undergo, they should make more of an effort to provide patients with a helpful option under their care. We will vote with our feet if you have anything better to offer. And believe me, we are all such big mouths in the Lyme disease community that we would let everyone know if others' approach and treatments really helped us. Even if only symptomatically. Even if it wasn't a cure.

Now, admittedly, there are fewer people who suffer from my condition than who suffer from cancer. But even so, it seems that no matter how many or how few people suffer from a medical condition and/or disability, that there should be a certain baseline recognition, acceptance, and accommodation for that condition or disability. Not just from patient organizations that patients have had to put together from scratch - but from medical institutions, doctors associations, societies, and research groups.

There is something, though, that has troubled me about what makes post treatment Lyme disease (or as the IDSA puts it, "Post Lyme Disease Syndrome") different from other conditions (orphan, or of unknown etiology) that has made me wonder how it has come to be treated as it has been, historically:

Unlike other conditions where the cause is unknown and speculated about, mine does have the distinguishing characteristic of having been triggered by Lyme disease in some way. There is a clear issue of cause and effect here; of some sort of relationship which has already been defined in medical literature.

But people in my situation don't even have the benefit of having the label of "Post Lyme Disease Syndrome" holding significant meaning for them when they apply for disability - even though a number of us suffering with persisting symptoms would be considered to have this condition by some medical professionals.

In the Klempner trial, it was noticed that those most severely affected by this condition had a quality of life and functionality similar to patients with congestive heart failure. This statement was not made by an LLMD (for those whom have issues with an LLMD and may be dismissive about such statements) - this was a statement made by an academic researcher who studied patients suffering with my condition, whatever label you want to apply to it.

Somehow, it seems that whatever I have should be taken more seriously, and there should be more institutional and societal support for it. It shouldn't be a backbreaking effort to explain what ails me - with my medical history, test results, and clinical diagnosis, it should just be accepted as part of my reality and worked with, rather than denied and shrugged off.

Note: Minor edits for style made to this text January 28-29, 2011.

This marks the end of part one of my rant, Why Dealing With Lyme Disease Drives Me Crazy. Continue on to part 2 HERE.

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4 Admin Update: Comments on Embers Research; Site Changes Coming

Quick update here from Camp Other:

First, I've finally written some comments on select excerpts from Embers et al's most recent publication, Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection.

Read more here: http://campother.blogspot.com/2012/01/paper-persistence-of-borrelia.html

Second, I'm looking to overhaul the site in the coming days. So expect some changes - possibly major changes - as I want to streamline Camp Other blog. Comments are welcome on the process as it unfolds.

Over and out...

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8 What I'd Like To See The IDSA Do For Lyme Patients In 2012

Since Camp Other is not on Facebook and has only had the link and comments list (including deleted comments) passed along, I've decided to post here what my answer is to the IDSA's question, "What would you like to see from your society in the coming year?"

I realized in reviewing all the comments I've seen to date that some people are thinking along similar lines as I am. But anyway, here's my proposal:

I would like to see the IDSA publish a paper which characterizes all the data on those patients who have stated they have been diagnosed with chronic Lyme disease and/or Post-Lyme Disease Syndrome. What are the similarities both in terms of empirical testing (not just ELISA C6 and WB, but immunological as well), history, presence of coinfections, genetic profiles, preexisting conditions, and symptom presentation in this patient group? It'd be good to see aggregation and see if there are specific subgroups of all these patients - rather than just see and know about patients who met CDC surveillance criteria who could participate in clinical trials. Those who are living with CLD/PLDS may not be those who end up participating in clinical trials. Let's see a characterization of the data first, much like what the Norwegians did this past summer in an NIH study, "The Phenomenon of "Chronic Lyme"; an Observational Study"(of which I am still waiting for the results).

I would like to see the IDSA publish a detailed web site which explains their own hypothesis or hypotheses for autoimmunity giving rise to persisting symptoms after antibiotic treatment for Lyme disease. There is little detailed information available online all in one place on how autoimmunity hypotheses came to be adopted after persisting infection models were considered - even though there are plenty of research papers where the purpose was to determine any autoimmune factors in infection. The information is not laid out in one logical coherent piece displaying all the building blocks of findings for others to see. If the IDSA thinks they have a strong argument in favor of autoimmunity and many people fail to agree with it, it seems to me they have failed to support it.

I would like to see the IDSA also include on that web site what the evidence is for persistent infection after antibiotic treatment, and a detailed explanation on why they think an infection cannot persist beyond 2-3 weeks of antibiotic treatment in any patient, and a list of criteria which would need to be met in order to determine that Borrelia does and can persist in its host. (Something specific about #2 on this page, and more detailed.)

I would like to see an extension of the proteomics research which distinguished the CSF proteins of Chronic Lyme Disease/Post-Lyme patients from the CSF proteins of CFS/ME patients. In particular, see a comparison between acute Lyme disease, late stage Lyme disease, and chronic Lyme disease protein distributions. Are they the same? Are they different? Can we use this knowledge to learn more about disease progression?

I would like to see some more research done on how different genospecies of Borrelia register on different serological tests for Lyme disease. It might not even be fair to continue using tests for "Lyme disease" - what might be a more accurate test panel would be one for Borreliosis, which covers all Borrelia including relapsing fever Borrelia and forms of Borrelia which do not always present with the tell-tale EM rash (hardly tell-tale under those circumstances). I'd also like to see related research on how repeat panel testing catches more disseminated infection which was not caught earlier. (The issue here being that early suspicion of disease must be present - ethically if you suspect and do not treat, this creates problems when one is found serologically positive.)

I would like to see some more research done on how different antibiotics affect different kinds of Borrelia. The fact that some patients do experience treatment failure even in early Lyme disease - up to 10% of all acute patients - may be due to the efficacy of their initial treatment. Refer to this:

"In Vitro Susceptibility Testing of Four Antibiotics against Borrelia burgdorferi: a Comparison of Results for the Three Genospecies Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi Sensu Stricto."

"In 7 out of 12 comparative evaluations (P > 0.05), MBCs were significantly different among the three genospecies. B. garinii seemed to be especially susceptible to azithromycin, while amoxicillin had a significantly greater effect on B. burgdorferi sensu stricto compared to the other genospecies. Ceftriaxone had the lowest MBC with B. afzelii and increasingly higher MBCs with B. garinii and B. burgdorferi sensu stricto. Doxycycline did not show any remarkable differences in its effects on the three genospecies."

Most of all, I would like to see the IDSA have a heart, and for dismissive opinions such as "In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection," to not be included in official professional medical guidelines for the treatment of Lyme disease. Any opinion such as this must be rigorously backed by fact and not by comparison to the population at large. Any condition which involves pain as a symptom could be compared to pain in the population at large. This should not distract one from the fact that certain medical conditions involve pain as a symptom. The controversy in Lyme disease may not end any time soon, but if patients were taken at their word for describing the serious limitations and degree of pain that they experience on a daily basis, that would go a long way towards a first step at healing the anger so many of us have.

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