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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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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0 News: Judy Mikovits To Be Released On Bail

The latest report on the Mikovits case comes from the AAAS Science Insider:
http://news.sciencemag.org/scienceinsider/2011/11/inmate-mikovits-meets-judge.html?ref=ra

Regarding the outcome of today's proceedings, the judge granted a request for a continuance on the extradition demand and asked Mikovits to return on the 19th of December.

Mikovits, who has denied wrongdoing through lawyers handling her civil suit, posted bail shortly after the hearing and has been expected to be released this evening.

More details on the case and discussion of a settlement can be found here, on the Ventura County Star site:
http://www.vcstar.com/news/2011/nov/22/world-known-researcher-set-to-be-released-on/

And here, Nature blog discloses that one of Mikovits' fellow researchers, Max Pfost, claims to have stolen her notebooks and to have given them to Mikovits', but Mikovits' denies this.

Nature blog also states:

The affidavits add a new wrinkle, alledging that Mikovits, a chronic fatigue syndrome researcher, was scheming with Pfost to “move the grants from WPI”. This includes about half of a US$1.5 million research grant (an R01) from the National Institute for Allergy and Infectious Diseases. In a meeting at a bar the night Mikovits was fired, Pfost claims: “She stated she was going to try to move the RO 1 grant and the Department of Defense (DOD) grants and stop the Lipkin study.”

More here: http://blogs.nature.com/news/2011/11/researcher_confesses_to_steali_1.html

The plot thickens... What really happened has yet to be seen.

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5 Doctors Who Decide Long Term Antibiotic Treatment May Be Warranted

This article by a doctor, Eating Crow With Lyme, has been making the rounds on several Lyme disease support lists and sites.

A lot of patients are feeling vindicated that longer term treatment with antibiotics is gaining more support when they see a doctor who used to hew tightly to the IDSA Lyme disease treatment guidelines has changed his mind.

What made the difference for the doctor in this article? To quote from the source:

"What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache. After a few baseline studies, her physician informed her that she was depressed and offered antidepressants. She told the physician she had read about Lyme disease and requested testing. He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors. Deer (carriers of the primary Lyme disease vector, the blacklegged deer tick) were as plentiful as cows on the farm. The ingredients were all there...

She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time. She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness. The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease. Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong. I kept thinking, “This seems to fit Lyme disease, but the tests are negative ... Hey, what do I know, these guys are specialists; I’d best keep my mouth shut.” Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease. After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better."

This is one doctor's story about one patient, but there are many similar stories that have been told online by other patients.

Based on this, one doctor changed his position on what Lyme disease was about, and now sounds supportive of longer term treatment - at least for someone with this specific background and case.

This is only one short article. I wonder how many other patients this doctor has seen and has wondered if they, too, have been struggling with Lyme disease.

I can't say that long-term antibiotic treatment is the right treatment for all patients in every situation; clearly some people can't tolerate them and their long-term effect on people is not entirely known. They are not risk-free, and they do not work equally well for everyone. At the same time, for patients in which they do work and it helps them get their life back, I have to wonder why there isn't more research being conducted on those who have already improved and reclaimed their former lives - and to compare them in some objectively measurable way against those patients who are acutely infected or have been suffering with long-term symptoms.

I keep thinking back on my own doctors who treated me for multiple ear and sinus infections with multiple courses of antibiotics, and how there was no external scrutiny from their peers or the insurance companies over whether or not my doctors could switch my antibiotics or give me more antibiotics in order to rid myself of such infections... There was no required blood test that I had to take in order to receive more and/or different antibiotic treatment. Objective evidence of infection wasn't necessary; I returned to the doctor and told them I still felt lousy, described my symptoms, and he or she gave me a new prescription.

Lyme disease is treated differently from a sinus infection. Differently from an ear infection. Differently from a urinary tract infection. Different from skin wound infections. All because for some reason, the idea is that Lyme disease has been properly treated after 2-3 weeks of the same antibiotic. In every case. For every person.

But is that correct? The word "guidelines" is supposed to mean precisely that. If an individual doctor determines a patient needs more treatment, then to provide more is at the doctor's discretion, based on an examination and the patient's response to treatment.

How does one support more treatment in one instance without providing any objective evidence, and deny it in another instance, while requiring objective evidence?

Is the goal for a physician to improve the quality of life for a patient, maintain their quality of life to prevent it from getting worse, or to cure a patient?

Is the goal of a physician - and the role of a physician - at odds with the goal of a clinical researcher and their own role?

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1 Paper: Evaluating Research Quality

This is a brilliant, well-written publication, Evaluating Research Quality, on how to assess the quality of research you are reading - written by Todd Litman at the Victoria Transport Policy Institute - which is "an independent research organization dedicated to developing innovative and practical solutions to transportation problems".

Read Evaluating Research Quality Here: http://www.vtpi.org/resqual.pdf

Todd provides a number of examples of what makes good, well-informed research and what is biased, ill-informed research, drawing from examples in the transit sector but also general examples such as the source of statements such as "Eskimos (Inuit) have 23 words they use to describe snow" and ideas such as "AIDs doesn't kill people, antiviral medication kills people".

The entire document is well worth a look from start to finish, and the "Sixty Four Methodological Potholes" table is an interesting and extensive read. It's more detailed than Carl Sagan's Baloney Detection Kit and highlights some of the same illogical fallacies and bias some have presented in their publications and arguments.

This specific portion could be applied (and I should probably more stringently apply these pointers to papers reviewed here) to Lyme disease research and all research in general, so I want to share it. Credit goes to Todd Litman and the Victoria Transport Policy Institute, who allow republication with credit. (Thanks, guys.)

Research Document Evaluation Guidelines

The guidelines below are intended to help evaluate the quality of research reports and articles.

Desirable Practices

1. Attempts to fairly present all perspectives.
2. Provides context information suitable for the intended audience. This can be done with a
   literature review that summarizes current knowledge, or by referencing relevant
   documents or websites that offer a comprehensive and balanced overview.
3. Carefully defines research questions and their links to broader issues.
4. Provides data and analysis in a format that can be accessed and replicated by others.
   Quantitative data should be presented in tables and graphs, and available in database or
   spreadsheet form on request.
5. Discusses critical assumptions made in the analysis, such as why a particular data set or
   analysis method is used or rejected. Indicates how results change with different data and
   analysis.Identifies contrary findings.
6. Presents results in ways that highlight critical findings. Graphs and examples are
   particularly helpful for this.
7. Discusses the logical links between research results, conclusions and implications.
   Discusses alternative interpretations, including those with which the researcher disagrees.
8. Describes analysis limitations and cautions. Does not exaggerate implications.
9. Is respectful to people with other perspectives.
10. Provides adequate references.
11. Indicates funding sources, particularly any that may benefit from research results.

Undesirable Practices

1. Issues are defined in ideological terms. “Straw men” reflecting exaggerated or extreme perspectives are use to characterize a debate.
2. Research questions are designed to reach a particular conclusion.
3. Alternative perspectives or contrary findings are ignored or suppressed.
4. Data and analysis methods are biased.
5. Conclusions are based on faulty logic.
6. Limitations of analysis are ignored and the implications of results are exaggerated.
7. Key data and analysis details are unavailable for review by others.
8. Researchers are unqualified and unfamiliar with specialized issues.
9. People with differing perspectives are insulted and ridiculed
10. Citations are primarily from special interest groups or or popular media, rather than from peer reviewed professional and academic organizations.

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3 Can a computer more accurately diagnose Lyme disease than a human?

I came across this article earlier today, though so far I haven't seen mention of it in the Lyme disease community. (It was published earlier this month, though, so I might have missed it.)

The article, "Just Months After Jeopardy!, Watson Wows Doctors With Medical Knowledge" is about how a computer can make connections between seemingly unrelated symptoms to determine a patient's diagnosis.

In this case, the following scenario and outcome was presented:

"The trainee was sequentially presented the details of a fictitious patient: there’s an eye problem; vision is blurred; the family, living in Connecticut, has a history of arthritis. The trainee’s initial response was uveitis. More clues and the diagnosis was changed to Behcet’s disease until finally the trainee settled on Lyme disease. How sure was this seemingly hasty student of medicine? Seventy-three percent sure."

One important point to be made about the database-based doctor:

"Following its resounding victory on Jeopardy!, IBM’s Watson has been working hard to learn as much about medicine as it can with a steady diet of medical textbooks and healthcare journals. The mock case described above was part of a recent demonstration to the Associated Press showing just how much Watson has learned. The robot’s diagnosis was correct and it identified a link between symptom and cause that was “not common,” as one participating physician called it. After being told the patient was pregnant and allergic to penicillin, Watson suggested treating her with cefuroxine. Its human colleagues agreed."

A striking statement was made further on about how the amount of medical knowledge available doubles every 5-7 years and doctors struggle to keep up with it. This would definitely make the case for having a medical database at one's disposal to assist with diagnosis, but to me nothing is going to replace observation and good old hands-on examinations for many conditions.

We aren't quite at the level of Star Trek probes, but perhaps we're headed that way in the future.

Read more here, at the following link: http://singularityhub.com/2011/06/06/just-months-after-jeopardy-watson-wows-doctors-with-medical-knowledge/

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0 BBC Article On Assessing Risk (Cellphones, Carcinogens, & Others)

This isn't about Lyme disease and tickborne infections, but it is definitely food for thought when considering the risk involved in any action you decide to take.

Check this article out:

Link: http://www.bbc.co.uk/news/magazine-13886254

Summary Teaser:

BBC News - Go Figure: Do we understand 'risk' of mobile phone use?

What should we make of recent news reports speculating about whether mobile phones cause cancer? It's all about how we deal with uncertainty, says Michael Blastland in his regular Go Figure column.

I highly recommend reading the highly rated comments from the "All Comments" pile, too. Insightful stuff, there.

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0 Q & A From Camp Other

Wherein Camp Other answers questions that are assumed one might ask, but haven't been directly posted...

Q: Why do you write about Lyme disease as something that might be a chronic, persistent infection at some times and not at others?

A: Because sometimes there might be a chronic, persistent infection in some people. There are case studies showing it does happen, with Vicki Logan being probably the most dramatic and well-known publicized case. This New York Times article from 1993 about Vicki even contains a footnote from Allen Steere, saying on rare occasion, Lyme disease can be chronic. Today, it's said Steere changed his mind - but when this happened and what the milestone moment was remains unclear to me. This is something many Lyme disease patients would like to know. But nonetheless, there are case studies that show people can have persistent infections - as well as animal studies.

Q: Do you think you have a chronic and persisting Lyme disease infection?

A: How many people really have persistent infections is unknown - and the problem is that there is no test in existence which can determine this. This is a source of much frustration for me.

If that sounds evasive, I don't intend it to be - all I know is that I have had a textbook case of Lyme disease and antibiotic treatment has helped with symptoms. And that's it.

Q: How did you know you had Lyme disease in the first place?

In my case, I knew right away. I was bitten by a tick during a hike and found it hours later. I went on to develop a raised red rash that kept expanding around the bite, and then developed symptoms of the worst flu I ever experienced. I had additional symptoms which were very intense. I had a positive Western Blot and a doctor treated me with antibiotics - however, they were not the first choice in antibiotics used for Lyme disease due to allergies. I also contracted Babesia, which was confirmed by testing. I was later told my initial symptoms were as severe as they were due to Babesia. From research I have read, this makes sense.

Q: How are you doing now?

Better. Not 100% well, but better. And I say this cautiously, as I've had stretches where I've felt better and stretches where I've felt like utter shit.

Q:  Why is it that patients with persisting symptoms of Lyme disease are sometimes given the diagnostic label of Chronic Lyme Disease and at other times, Post Lyme Disease Syndrome?

A: That question has been addressed elsewhere on this blog. Attempts to address it more eloquently may occur. As it stands, I have come up with a new term that I think both the IDSA, NIH, and Lyme disease patients could agree to, and that is Schrödinger's Lyme disease. Anyone versed in quantum mechanics should have an appreciation for my use of the term.

Q: Why do you persist in this issue of persistence when many scientists think there is an autoimmune disorder underlying those who have persisting symptoms since contracting Lyme disease?

A: Because I don't think that's the entire story. I think that some people have infections that last longer than others and are harder to treat - there's a gray area in medicine here. I also think there is a strong element of immune suppression and dysregulation before one gets to developing autoimmune disorders. I think autoimmune disorders can be triggered by Lyme disease - certainly this has happened with other infections. But what are the steps that happen before it gets to this point? We need to look deeply at this disease's pathogenesis.

Q: What do you think of long term antibiotic use for treating infection?

A: I think that some Lyme disease patients probably do need longer term treatment than others and in higher doses - there are different MIC's and MBC's listed in in vitro antibiotic susceptibility tests for Borrelia burgdorferi (Bb) and it's not standardized. More antibiotic research is needed - especially in determining the right treatment for late stage cases.

That said, I am concerned about the use of many years of long-term treatment with antibiotics, and this is one reason why I'd like to see scientific research end the controversy about whether or not Bb can persist; solve whether or not it has a dormant or low metabolic state in tissues and can return in increasing numbers.

As time goes on and bacteria becomes more resistant to antibiotics, regardless of their potential side effects, other methods will need to take their place if new antibiotics are not developed. I'm intrigued by the possibilities here and am always speculating about them.

I think scientists could learn something by monitoring and testing those patients who do go on long-term antibiotic regimens - it could be informative to see how this has an impact on their immune systems and bacterial flora, let alone any impact on targeted pathogens.

Q: What do you think of alternative medicine use for treating infection?

A: My priority has been researching Borrelia burgdorferi and Borrelia in general itself, and touching on topics in science and some in society that are directly related to that -  only occasionally do I venture into looking at alternative medicine when readers comment on it.

One thing I hope to do in the near future is explain in detail how Borrelia burgdorferi affects different parts of the body and the immune system, and also try to explain why some of the alternative therapies mentioned online are likely to work and/or not work based on what is known about Borrelia burgdorferi's interaction with its human host.

Some may say, "But doctor so-and-so already explained why this is good for the "cyst" form, " or "My herbalist said detoxing is necessary because of neurotoxins". And I hear that - yet at the same time I think, "Hey, what can I learn about this? I want to check this out for myself."

In saying checking it out, I don't mean immediately trying it. I mean I want evidence that either supports it... or doesn't.

Q: Do you have any comments on protocols like the Marshall protocol, Klinghardt's protocol,  etc? I haven't seen much mention of such protocols on this site so far.

A: I realize there are a lot of people who are interested in alternative medicine and understand why they are - at the same time, I'm not going to begin endorsing alternative treatments without researching them.

But if I happen to come across something in my reading that indicates an herb, supplement, or lifestyle change has a low risk profile, has been well studied, and could help lessen symptoms - I may write something about it and affix a list of disclaimers and caveats to it. I'd do the same for an antibiotic, too - all treatments are subject to this kind of write-up.

If I conduct my own experiment, I'll try to document it faithfully and diligently. But I'm not bound to do this often.

Q: What do you think are some of the biggest myths Lyme disease patients have heard about Lyme disease that you have confirmed for yourself as being myths so far?

After reading enough research, I think that the biggest myths so far are that everyone with similar symptoms must have undiagnosed Lyme disease, that Lyme disease bacteria produces an endotoxin (that would require LPS - Bb does not have LPS),  and that Lyme disease bacteria is indestructible (where did anyone get this idea?)... there are others, but I have to think more about them.

Some things which people seem certain about, I'm currently not so certain about - for example, I'm not so sure that a "cyst" form is relevant to Bb's survival, and I have yet to see confirmation that biofilms are an issue. I would look more at Bb's antigenic variation, segmented genes, and Bb's interaction with our immune system as a survival mechanism than these cyst forms and biofilms based on what I've read so far.

If anyone produces solid evidence that counters or supports these claims, I'll consider them. I'm open to hearing different viewpoints.

Q: What is one of your major concerns regarding other Lyme disease patients?

Depends on which patients you're talking about?

I think a lot of patients are level-headed and just trying to make sense of what's happened to them and don't know what to do next, and ask doctors and researchers questions to try to get a handle on their condition. Some do their own research as I do, and try not to invest too much in any one paper that comes along.

Science is an ever moving and ever changing understanding of our world, not something solidly fixed in stone - and one has to look at a whole body of publications to begin getting a snapshot of what is currently understood and not understood.

I am concerned that some patients will lose or have already lost credibility in the eyes of others because they talk about conspiracy theories a lot and try alternative treatments that not only sound like they aren't fun - but aren't safe, either. 

And I'm concerned that a number of patients misread and misunderstand science articles and papers, and pass on their misunderstanding to others as if these papers contain treatment ideas that are immediately applicable to their situation... This latest article posted just this week on scientists using sugar to combat persister cells in antibiotic resistant infections is just one example - as a result of misunderstanding it,  some patients are now deciding to eat more sugar with their antibiotics in hopes of killing Borrelia. 

This is not what this research suggests to me that one should do at all, based on a number of factors.  First of all, looking at the original abstract and supplemental file, the tests were done on E. coli and S. aureus and used aminoglycosides. Second, the concoctions were tested by injecting mice with them. Third, they were treating urinary tract infections, if I'm not mistaken. That's very different from Bb and oral antibiotics, and also different from Bb and IV antibiotics in humans. Fourth, never run with what preliminary research states until it is independently confirmed by another party or two with no conflicts of interest and solid credentials.

I could go on, but between those, the authors' own note of caution not to base too much on their own research, and my concern for those with diabetes and hypoglycemia for a start - adding extra sugar to your diet doesn't sound like a good idea.

Q: Do you have any off the wall speculations you've ever made about anything?

As an intellectual exercise - sure. Right now the one contender I'm thinking about is that underlying a lot of diseases may be an immune dysregulation component, and I'm wondering if anything in our environment has led to this dysregulation. Petroleum-based plastics? Industrial chemicals? I don't know. And I admit I don't know - no conspiracy theory here, I think if something in the environment has affected people's immune systems, it was not intentional.  The planet is a more polluted place than it was hundreds of years ago, and there are more people on it. The intersection between pollution and people is bound to be reflected in their health eventually - asthma being one direct example.

Q: What do you think of LLMDs?

A: I think like other doctors in that there are good ones and not-so-good ones?

And just to be clear on the matter, because some people aren't aware of this: Not all LLMDs are ILADS LLMDs. Some are, and some aren't, and having the ILADS affiliation means different things to different people... I know of a number of non-ILADS LLMDs who are skilled doctors, and non-ILADS doctors who are not so skilled. You have to spend time doing your own individual evaluation.

Seriously, I think LLMDs I know the most about treat patients for genuine cases of tickborne infections in situations where other doctors did not. If more family doctors caught a number of these cases earlier and treated them, there may be less of a need for LLMDs.

I may be biased in this response, though, because I was textbook and not treated by the family doctor who first saw me.

(This response was edited this afternoon for greater clarity... I realized my initial response was somewhat vague.)

Q: If you had one message for scientific researchers in general, what would it be?

A: Please help us get to the bottom of this, end the controversy, and help us find a treatment that is safe and works so that we can get back to having normal lives.

Q: Why are you writing for the Daily Kos this month (May 2011)?

A: Because I thought I'd try something different in observance of Lyme Disease Awareness month, and also see what kinds of discussions come out of writing for a wider audience. 

Q: If you could improve only one aspect of your health right now, what would it be?

A: Living in a pain free body. I can put up with a certain amount of  insomnia and fatigue, but the pain is something I could do without.

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4 Video: What The Internet Is Hiding From You

I just watched this video with Eli Pariser, where he talks about what the internet doesn't let you see because it is tailored with you in mind.

This is almost ten minutes of video you don't want to miss, because it talks about how completely different results are shown for two people who are looking up the same keyword.

This means that one person who is interested in Lyme disease and conspiracy theories will get more results that include those two concepts - whereas a person who is interested in Lyme disease and scientific research will get more results that include those two concepts when they type the keywords, "Lyme disease" into their browsers.

It's important to be aware that what you don't see can be as important as - if not more important than - what you are actually seeing online. Anything that makes you uncomfortable, challenges your point of view, or is different may be hidden from you by design.

Watch this video. I think everyone should see it, the message is important whether you are looking up information on Lyme disease, US politics, health care plans, and anything you can think of entering into that little search box at the top of your browser...



How do you fix this?

Google needs to set it up so we have the option to turn filters on and off that involve personalization.

Until then, the wider a variety of different terms you use frequently in searches - including ones that you disagree with - the wider the number of results you are bound to get in return. They'll just get included in your filter by default if you use them often enough - even if you don't read all the results.

If you're liberal and searching for something on politics, put "GOP", "Republican", and "conservative values" into your searches every once in a while. Use "liberal Democrats" "social Democrats", "progressive values" into searches if you're conservative every once in a while. And for good measure, throw in "libertarians", "green politics", and "economy" in with any of those randomly and see what crops up.

You can do the same thing with just about anything to throw off Google's existing filter system, and use different search engines with different data sets just to see how their own internal algorithms work. Consider it your own science experiment in data manipulation - it's better you manipulate your own data than to let someone else do it.

Additional note: The spinning disk in the middle of the screen is a TED issue, if you see it - nothing to do with Camp Other. Keep watching despite it - it's worth the effort and you can see what you need to even with it there.

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0 Exercise: A Better Lyme Disease Case Defintion

CDC painting by numbers: The numbers
need to represent reality - actual cases are much
higher than those reported to the CDC.  

Since many patients do not like the case surveillance definition for Lyme disease, I have an exercise for my readers.

I'm going to provide you with a case definition for Lyme Disease, and see what you have to say about it.

Do you think it is better than the current CDC case definition? Or worse? Why or why not?

What do you think needs to change, and how would you change it?

What do you think is missing? What should be added?



Please share your view in comments - I want to see what people say about this provided definition first and then see if we can collectively rewrite a better one.

Lyme Disease

Clinical description

A systemic, tick-borne disease with protean manifestations, including dermatologic, rheumatologic, neurologic, and cardiac abnormalities. The best clinical marker for the disease is the initial skin lesion, erthyma migrans, that occurs among 60-80% of patients.

Clinical case definition

• Erythema migrans, or
• At least one late manifestation, as defined below, and laboratory confirmation of infection

Laboratory criteria for diagnosis

• Isolation of Borrelia burgdorferi from clinical specimen, or
• Demonstration of diagnostic levels of IgM and IgG antibodies to the spirochete in serum or CSF, or
• Significant change in IgM or IgG antibody response to B. burgdorferi in paired acute and convalescent phase serum samples

Case classification: a case that meets one of the clinical case definitions above

Comment

This surveillance case definition was developed for national reporting of Lyme disease; it is not appropriate for clinical diagnosis.

Definition of terms used in the clinical description and case definition:

A. Erythema migrans (EM)

For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing. A solitary lesion must reach at least 5 cm in size. Secondary lesions may also occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM. For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mild stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.

B. Late manifestations

Late manifestations include any of the following when an alternate explanation is not found:

Musculoskeletal system

Recurrent, brief attacks (weeks or months) of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgia, myalgia, or fibromyalgia syndromes alone are not criteria for musculoskeletal involvement.

Nervous system

Any of the following, alone or in combination:

Lymphocytic meningitis; cranial neuritis, particularly facial palsy (may be bilateral); radiculoneuropathy; or rarely, encephalomyelitis. Encephalomyelitis must be confirmed by showing antibody production against B. burgdorferi in the cerebrospinal fluid (CSF), demonstrated by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesia, or mild stiff neck alone are not criteria for neurologic involvement.

Cardiovascular system

Acute onset, high-grade (2nd or 3rd degree) atrioventricular conduction defects that resolve in days to weeks and are sometimes associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not criteria for cardiovascular involvement.

C. Exposure

Exposure is defined as having been in wooded, brushy, or grassy areas (potential tick habitats) in a county in which Lyme disease is endemic no more than 30 days before onset of EM. A history of tick bite is NOT required.

D. Disease endemic to county


A county in which Lyme disease is endemic is one in which at least two definite cases have been previously acquired or in which a known tick vector has been shown to be infected with B. burgdorferi

E. Laboratory confirmation

As noted above, laboratory confirmation of infection with B. burgdorferi is established when a laboratory isolates the spirochete from tissue or body fluid, detects diagnostic levels of IgM or IgG antibodies to the spirochete in serum or CSF, or detects a significant change in antibody levels in paired acute and convalescent phase serum samples. States may determine the criteria for laboratory confirmation and diagnostic levels of antibody. Syphilis and other known causes of biologic false-positive serologic test results should be excluded when laboratory confirmation has been based on serologic testing alone.


Well, what do you think? What works? What needs rewriting and why?

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0 Research And A Personal Story: Computer scientist researches own Lyme disease

Well, this has been posted elsewhere, but I just had to share it here, too:

Computer scientist researched her own condition, Lyme disease

Source link: http://www.post-gazette.com/pg/11101/1138165-114.stm

Read the above article, and see if you see yourself (or someone you care about) in this woman's shoes. (I know that I can relate to her own search for reliable medical information, that's for sure.)

After much research from many different medical sources, Ms. Mankoff decided to try long-term antibiotics. After 18 months of antibiotic use she could stop treatment and go on to write professional papers, work full time, and do research on how members of the Lyme patient community seek out information on Lyme disease diagnosis, treatment, and support.

There is mention in the Post-Gazette article above that the paper based on her research of the Lyme patient community will be presented at an upcoming conference on computer-human interaction, CHI 2011.

That paper is:

J. Mankoff, K. Kuksenok, J. A. Rode, S. Kiesler & K. Waldman, Competing online viewpoints and models of chronic illness. In Proceedings of CHI 2011. To Appear (Full Paper)

And here is a link to the FULL TEXT (no subscription required):

http://www.cs.cmu.edu/~assist/publications/11MankoffCHI.pdf

If anyone happens to be in the Vancouver area this May 6 and would like to attend the session, it will be from 4:00-5:20 pm. (A link to the conference appears at the bottom of this post.)

A description is as follows:

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper
Jennifer Mankoff Carnegie Mellon University,
Kateryna Kuksenok University of Washington,
Sara Kiesler Carnegie Mellon,
Jennifer A. Rode Drexel University,
Kelly Waldman Duke

Abstract »

People with chronic health problems use online resources to understand and manage their condition, but many such resources can present competing and confusing viewpoints. We surveyed and interviewed with people experiencing prolonged symptoms after a Lyme disease diagnosis. We explore how competing viewpoints in online content affect participants’ understanding of their disease. Our results illustrate how chronically ill people search for information and support, and work to help others over time. Participant identity and beliefs about their illness evolved, and this led many to take on new roles, creating content and advising others who were sick. What we learned about online content creation suggests a need for designs that support this journey and engage with complex issues surrounding online health resources.


If you wish to attend CHI 2011 for only a day session on site, you must be warned that registration is steep:
http://chi2011.org/attending/registration.html

If you can't make it to Vancouver and pay for admission, consider sitting at home, reading the pdf of the paper above, and emailing Ms. Mankoff with comments and questions.

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1 Part 1: The Value Of Anecdotal Evidence

A few people have asked me in email about why anecdotal evidence is not something that the scientific community tends to accept, and one person even went so far as to say it was stupid to ignore the stories that Lyme disease patients share about their experiences and how certain patients respond to different treatments.

After all, anecdotes are based on real life experiences - and it is possible that a treatment does in fact work and someone's personal experience may be the first indication that there is something meaningful happening - either an improvement in symptoms or a step closer to a cure.

Is ancedotal evidence ever acceptable in scientific research and in professional healthcare? Why or why not?

I'd have to say that in general, it's acceptable on two counts:

1) Cases. When anecdotes are documented very carefully, they are called case reports or a case series. These case reports or case series are about individual patients and doctors' experience in treating them, and their treatment is not part of a controlled experiment. But careful documentation over time of patients' treatments, symptom changes, test results, and other findings at least ensures that information is recorded as events and changes unfold and also can demonstrate other variables which may have led to the patients' conditions (preexisting conditions, addition of new medications, insomnia, etc.).

2) As a means for a starting point for future research. If enough case reports or case series are completed that are pointing to a useful treatment or cure, then this can be used to develop and design controlled studies that can ensure that treatment is specifically helping improve certain symptoms or cure patients. Controlled studies help reduce or eliminate variables which may cloud or muddy the issue of what is or isn't changing patients' conditions, which is why they get more weight as a valid scientific approach than anecdote does.

Under both of these conditions, the information would have to be scrupulously maintained and recorded by someone who is reporting honestly about patients' conditions and their treatments.

Now that these two conditions are defined, what other conditions make anecdotal evidence less acceptable to a scientist who is trying to learn the truth about whether or not a treatment is effective in reducing symptoms or curing a condition?

In a way, we can think back to what I wrote about tomatoes in a comment a little while ago.

Two centuries ago, people in North America and parts of Europe did not make tomato sauce. Pizza as we know it was yet to be invented. The reason was because no one would eat tomatoes, as they were members of the nightshade family and it was believed they were poisonous.

Somewhere along the line, someone must have gotten up the nerve to be the first person to eat a tomato and discover after eating it that they weren't dead. From there, perhaps they went on to discover the joy of fresh salads with tomato, tomatoes roasted over an open fire, and other tomato-based dishes before others began slowly adopting the tomato as an edible item.

That first person could be thought of as brave, stupid, or both. In retrospect, though, most people just eat their spaghetti today without much thought about how people got around to eating it. If that person had been wrong, we would all be sitting around here with more fettucini alfredo than we knew what to do with.

But here's the thing:

What if the first person had gotten sick after eating that first tomato, and lived to tell about it? Maybe people would look at their experience and still regard the tomato as something less than fatal if consumed - but still something toxic and bad to eat. And then they would have been wrong, without knowing what the whole story was.

One of the first flaws in using anecdotal evidence is not being able to consider all the variables that affect one's condition and the outcome. In order for anecdotal evidence to have more value, other variables must be eliminated to make sure of the truth.

Looking at the problem of the tomato and the first person who got sick after eating it, one can come up with the following basic question:

How can you be so sure it was a toxin in the tomato that caused their symptoms?

They could have done any of the following:

• Eaten a bad piece of fish an hour before they ate the tomato, and the fish really made them sick.
• Contracted a stomach flu or virus from their next door neighbor, and that made them sick.
• Eaten an insect that was within the tomato that didn't agree with them.
• Had a small amount of mold or fungus on the tomato that didn't agree with them.
• Been unlucky enough to eat a tomato that was a bad tomato - not ripe enough, or somewhat overripe; perhaps bordering on rotten.
• Had an allergic reaction to the tomato itself.
• Had a medical condition that was completely unrelated to anything they ate or a passing viral infection.

So, one can think of a number of reasons why someone could have eaten a tomato and got ill afterwards - but each of these reasons has nothing to do with the tomato itself being a toxic food.

Without knowing any of these potential reasons, from external observation, one could be led to follow simple cause and effect, where the person observed to have eaten the tomato got sick shortly thereafter and everyone assumed during that time that toxins in the tomato was the reason why.

Well, you know what they say: Never assume, because then you make an...

Anyway, eventually someone else probably heard that others enjoyed eating tomatoes in other countries and lived quite long and fruitful lives despite this, and tried eating a tomato and didn't have any problems. Once enough people began eating tomatoes and not puking their guts out or dropping like flies, then more people felt willing to try eating them - even if they might later turned out to have had a serious allergy to them, at worst - or decided they just didn't like them, at best.

In the end,  most people on the planet have had the experience of eating a tomato by now and most of them don't get horribly ill from consuming them.

It might have taken a while to build up enough anecdotal evidence to convince people that tomatoes were safe to eat. After all, people were convinced for a long time that they were poisonous, and any of the above issues listed may have led to people getting ill around the eating of a tomato. It was probably clearer tomatoes were okay if the people eating them weren't also coming down with the stomach 'flu', washed their tomato before eating it, and they hadn't eaten anything else all day.

So, tomatoes are, by and large, safe to eat - and many would say they're quite tasty, too. (I do.)

Let's talk about ancedotal evidence using the tomato in another way, though - by making a claim.


What if a person were to say, "I feel so much better after eating this tomato," or even "Symptom x has improved ever since I ate a tomato."

Well, I admit that many times after I've eaten a tomato, I feel better, too - but usually it's because I've been starving and finally had something to eat. And it was tasty. And filling. Which brings me a certain amount of emotional and physical satisfaction.

But once I begin saying something as specific as, "Symptom x has improved ever since I ate a tomato", well, then that provokes a question in response to that claim:

How can you be so sure it was the tomato that caused symptom x to improve?

The person who ate the tomato could have done any of the following or had them happen to them:

• Had a temporary improvement in that symptom based on the usual ups and downs of their condition.
• Had a lasting improvement that occurred for reasons unknown to anyone.
• Experienced an improvement due to some medication they'd already been taking over time, and just noticed a distinct improvement after eating the tomato.
• Experienced an improvement due to some medication they'd started recently.
• Experienced an improvement due to some other supplement or food they'd been consuming over time, and just noticed a distinct improvement after eating the tomato.
• Experienced an improvement due to some other supplement or food they'd started consuming recently.
• Experienced improvement because of their frame of mind - belief in the tomato making them feel better actually led to them feeling better. (Also known as the placebo effect.)

And of course, it is possible that symptom x really did improve because they ate that tomato, but then: How would you know?

The only way you could know for certain would be to eliminate all the other variables as much as one possibly could, and test it. Find some way to measure the improvement in symptom x in that person, and eliminate the other variables - then go on to repeat that experiment with a larger group of people.

To be sure that it is the tomato that is leading to symptom improvement, the highest test of the tomato-causes-symptom-x-improvement-hypothesis is to give a fairly homogenous group of people with symptom x (where the above variables are eliminated) a tomato and measure improvement in symptom x post-consumption, and to give another fairly homogeous group of people with symptom x (where the above variables are eliminated) a non-tomato placebo that looks and tastes like a tomato and measure improvement in symptom x post-consumption of that placebo.

Next, don't tell which group has the real tomatoes and which group has the fake or placebo tomatoes. Better yet: Don't even tell the scientists running the experiment who has the real tomatoes and the fake ones, either. That way, when scientists come around to record data from the patients, they can't accidentally let slip in conversation or body language whether or not the patients in front of them are consuming the real tomatoes or the fake ones. They don't know anything about it. So they can't influence the outcome much.

This is what double blind studies are all about - and with them, it's supposed to be easier to obtain more reliable evidence that a particular treatment works (or not).

One of the problems with discussion of improvement of subjective symptoms - such as reporting "I feel better", or "symptom x is better", is that they do not make good outcome measures.

How do you measure them? Where do you draw a line in the sand between, say, pain that is a 6 out of 10 in one person compared to pain that is a 6 out of 10 in the next? What does '5' mean? (Ask Allie - she'll tell you what she thinks it means.) Does one person count having a runny nose as having a cold? If that person takes some Vitamin C, thinking it will help them avoid colds, they might dismiss their runny nose and report (and even remember) that they did not get any colds while taking the treatment.

One thing scientists have said all along is this: The plural of anecdote is anecdotes - not data. 

One has to come up with a well-defined set of criteria that can be consistently measured across a larger population in studies, and subjective reporting is often a problem given the examples above.

So, knowing all of this, what is the person who has already tried all of the tried-and-true, scientifically-studied treatments going to do?

What if one is a Lyme disease (and other tickborne infections) patient and has already blown through a number of antibiotics and is still symptomatic?

These questions and more will be addressed in part 2.

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