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.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

Read More

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.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

Read More

21 Letter: Antiscience and ethical concerns associated with advocacy of Lyme disease

Well, it's time for a little commentary on a recent publication which has been making the rounds in the Lyme disease patient community - this time on a letter which has been published to the Lancet recently. The letter is basically about those who believe Lyme disease can be a chronic, difficult to diagnose disease are part of an antiscience movement, and how the media, politics, and advocacy groups have supported unorthodox views concerning Lyme disease and other tickborne infections.

I'll post the excerpts in full first, and then a second time with my commentary interspersed.

---

Excerpts from: Antiscience and ethical concerns associated with advocacy of Lyme disease.

Auwaerter PG, et al. Lancet Inf. Dis. Aug 22 2011.

Aspects of Lyme disease advocacy are an important example of this antiscience movement. For the purposes of this Personal View, we will define this antiscience outlook to also include the promotion of pseudoscience and science that has weak credibility or validity because of fundamental flaws in its design or poor reproducibility.

For two decades, many Lyme disease activists have portrayed Lyme disease, a tick-borne infection, as an insidious, ubiquitous, difficult to diagnose, and often incurable disease, which causes mainly non-specific symptoms such as chronic fatigue, musculoskeletal pain, and neurocognitive dysfunction that can be treated only through the use of antibiotics for months or years.

As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science.
Politicians, the media, and the public have been left trying to discern the scientific facts from the pseudoscientific ones, with many regarding both as equally valid as they try to be fair and balanced.

When such inappropriate and uncritical weighting occurs, public and government officials unknowingly come to accept or even endorse highly unconventional and sometimes dangerous theories and therapies.

Many individuals who represent themselves as Lyme disease activists and LLMDs hold and promote views of a tick-borne infectious disease that is inconsistent with credible scientific evidence. Although relatively small in number, their effect should not be underestimated.

Their unorthodox perspectives and resulting practices have contributed to injury and even deaths of patients. Millions of dollars have been spent refuting their claims, and thousands of hours have been spent responding to false allegations, legal threats, congressional queries, and other harassments.

At a time when unnecessary healthcare expenditures are being scrutinised and widespread bacterial resistance has been linked to overuse of antibiotics, it is particularly important that unsubstantiated treatments be avoided.

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”. 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.

Such misplaced trust has also contributed to a similar situation in Europe, with increasing pressure being brought on authorities there to sanction the use of prolonged antibiotic treatment for patients without credible evidence of Lyme disease by groups such as the German Borreliosis Society and Dutch Lyme Association. This ill-founded advocacy is being extended to other, less common, tick-borne infections (and to non-Ixodes tick-transmitted pathogens such as Bartonella).

In conclusion, activists, through public appeal and political lobbying, have managed to divert attention away from existing evidence-based medicine in their quest to redefine Lyme disease. There is a serious concern that they will further endanger the public’s health unless responsible physicians, scientists, government leaders, and the media firmly stand up for an evidence-based approach to this infection that is based on high-quality scientific studies.

Read More

19 Commentary: A Letter From The CDC To Lyme Patients

I came across this letter online. Presumably, it was a letter in response to a letter from a patient with Lyme disease/Post Lyme Syndrome sent to the CDC - but there is no identifying information on the email, and I do not have any verification of its origin.

However, I want to post it along with a few comments, taking it at face value that it is what it appears to be and is real.

I have some questions to ask on the content as well as some criticisms about it. If this were an actual letter I had received from the CDC, I would have been disappointed by it.

---

-----Original Message----- From: NCID/VBI BZB Public Inquiries (CDC)
Sent: Tuesday, February 01, 2011 3:18 PM
To: XXXXXXXXX
Subject: RE: Lyme disease inquiry

Hello,

Your inquiry was forwarded to CDC's Division of Vector-Borne Diseases. We are sorry to hear of your health issues. Please be assured that CDC is constantly reviewing the scientific literature and makes recommendations according the quality of the scientific evidence. At this juncture, the risk of extended antibiotic treatment well outweighs any perceived benefits. As a public health agency, we are concerned not just about those with true Lyme disease, but also the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms.

Many of the statements that you make in your email are not accurate, and are examples of the type of misinformation that is spread through the internet and many advocacy groups regarding Lyme disease. In fact, if someone is not diagnosed until later stages of illness, IV antibiotics are recommended (not oral). That may not have been the case back then, but scientific evidence has demonstrated that to be the case. Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms. The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases). The mainstream medical community has searched for the cause for these symptoms, and there have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients. No long lasting improvement was shown over placebo. Anecdotes of recovery with nonstandard treatments are shared widely, but you can't base scientific recommendations on anecdotes. It is incumbent upon the proponents of continued and nonstandard treatment for Lyme disease to do the research needed to demonstrate the position that they so strongly believe in. In the meantime, there are many doctors and laboratories that operate a "for profit" business diagnosing anyone with Lyme disease. The reason some clinicians have been brought up on disciplinary charges is not because they operate outside the mainstream, it is because patients have suffered dire consequences from their experimental treatments, and some have even died.

Sincerely,

Centers for Disease Control and Prevention
Division of Vector-Borne Diseases
Bacterial Diseases Branch
Fort Collins, Colorado
email:dvbid@cdc.gov

---

My first comment on this is that I wish it were posted alongside the original emailed letter which was sent to the CDC so I could see which statements were made which may have been considered inaccurate - and I would have liked to have seen further detailed response from the CDC officer who would have fielded these statements and responded.

My second comment is that while it is good that the officer showed sympathy for the original letter writer's poor health, what follows is not in any way supportive or helpful to the person who has been suffering from persisting symptoms related to Lyme disease - regardless of what anyone thinks the cause is.

Beyond this, I'm going to comment on parts of this letter piece by piece.

"Please be assured that CDC is constantly reviewing the scientific literature and makes recommendations according the quality of the scientific evidence."

It would be helpful if the CDC set aside a web site with links to all the scientific literature they think is supportive of their approach to Lyme disease - as well as a ranking of the quality of the evidence supplied (how much of it is opinion-based, how much is based on case studies, how much is based on random controlled double blind studies, etc.).

"At this juncture, the risk of extended antibiotic treatment well outweighs any perceived benefits."

It would be helpful if the respondent clarified what this juncture is - I can only guess context from the content in the rest of the letter. While I'm fairly certain this is a response to a question about long term antibiotic treatment for Lyme disease, I'm not sure which specific juncture the writer is talking about in terms of timeline or symptoms.

But right now, my first question without any context is this: What happens when a patient has treatment failure?

How does the risk of extended antibiotic treatment for Lyme disease compare against extended antibiotic treatment for other conditions such as acne, ulcerative colitis, reactive arthritis, Hansen's disease, and tuberculosis?

How do the benefits of extended antibiotic treatment for Lyme disease compare against extended antibiotic treatment for other conditions?

"As a public health agency, we are concerned not just about those with true Lyme disease, but also the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms."

Why do they assume that so many people are being misdiagnosed with Lyme disease - versus there are a lot more cases of Lyme disease that are being diagnosed?

On the whole, it seems this statement is focused more on "the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms" rather than those with a history of true Lyme disease. This becomes more apparent by reading the rest of the letter.

The assumption being stated here is that multitudes of people are being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms.

What evidence do they have that this is true?

Why do they assume that so many people are being misdiagnosed with Lyme disease - versus there are a lot more cases of Lyme disease that are being diagnosed?

Every year the general trend has been an increase of official reported and probable cases reported by doctors and state health departments to the CDC.

The CDC itself knows this and acknowledges that in highly endemic areas the number of actual Lyme disease cases is 6-12 times higher than those which are reported, where are these multitudes of which they speak which are misdiagnosed?

"In fact, if someone is not diagnosed until later stages of illness, IV antibiotics are recommended (not oral). That may not have been the case back then, but scientific evidence has demonstrated that to be the case."

This is true to a degree.

Refer to the 2006 Lyme panel guidelines and you will see that use of IV antibiotics only applies to late (and early) neurological Lyme disease cases and not in the case of Lyme arthritis and other Lyme disease manifestations.

Addendum Aug. 28, 2011: Dr. Allen Steere is recommending an additional month of IV antibiotics for patients with chronic Lyme arthritis if the first two months of oral antibiotics are insufficient. (How is this determination made?)

"Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms."

Hey, this is me.

At least I think so?

I did receive a standard amount of appropriate treatment at first, but it was not the first line antibiotic choice due to allergies. Could that be the cause of treatment failure in me?

What happens if I have had neuroborreliosis and it wasn't diagnosed all this time? I never received any IV antibiotics for Lyme disease. So in that case, according to the CDC I would not have had appropriate treatment until I have had IV antibiotics for a month.

By their definition, was I treated properly?

"The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases)."

Why do they state there is no evidence to support the idea that some patients are still actively infected after standard treatment with antibiotics?

I wish the CDC officer who responded would have stated why the evidence of persistent infection in human and animal studies is considered scientifically unacceptable to the CDC. It would be informative to hear their perspective on this research.

The author says the cause of persistent symptoms is unknown - but then later goes on to state that the leading hypothesis at this time is that it is an autoimmune response.

To which I have to ask:

What is the evidence in favor of an autoimmune response, especially within 30 days after initial infection? Why does this hypothesis have greater weight than other hypotheses?

If some patients  develop an autoimmune disorder after contracting Lyme disease - does that eliminate the possibility that some portion of the patient population which has been diagnosed and treated for Lyme disease may have treatment failures and need additional or different antibiotics - or need to switch from oral to IV form?

Is this patient population going to be so uniformly homogenous in outcome that every patient who continues to have symptoms after 21 days of oral antibiotic treatment has an autoimmune disorder?

How quickly does an autoimmune disorder develop and what are the necessary conditions for its development?

This is requires evidence. Right now it's a hypothesis, and even if it's the leading hypothesis - it can still be wrong or not apply to all patients.

"The mainstream medical community has searched for the cause for these symptoms, and there have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients. No long lasting improvement was shown over placebo."

Three different statements are packed into this one.

1) The mainstream medical community has searched for the cause of these symptoms.

and

2) There have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients.

and

3) No long lasting improvement was shown over placebo.

In response to #1, my questions are: What does the CDC mean by "the mainstream medical community" in this statement?

It would be helpful to name names, offer specific citations for research which has been conducted, and see what has been done - as well as mention research that is in the pipeline and currently being conducted. As a patient, I would want to know what is currently being done to help address my issues and find more effective treatment for my condition.

In response to #2, there has been much discussion in the Lyme patient community about 4 placebo controlled clinical trials as well as criticism about them. Those within the community already know which 4 trials this CDC officer is likely to be using as references. However, this should not be assumed and it would have been useful to at least specifically offer citations for these studies to confirm this fact.

In response to #3, there has been reported improvement in patients while they were on antibiotic treatment during trials and that improvement stopped after antibiotics were stopped. One must consider that the antibiotics may have some positive effect on patients, whether that is antimicrobial, anti-inflammatory, or some other effect. It deserves more investigation.

Providing evidence that a particular long-term antibiotic treatment helps alleviate symptoms is a separate issue to test than a trial which provides evidence that a patient has persistent infection.

From my point of view, providing evidence that a particular long-term antibiotic treatment helps alleviate symptoms is a separate issue to test than a trial which provides evidence that a patient has persistent infection.

Certain kinds of antibiotics work better for certain pathogens than others due to their pharmacokinetics and if Borrelia burgdorferi is at least partly intracellular and has other survival mechanisms which may make it easier to evade antibiotics, then not only does the organism's pathogenesis require closer study - but more wide scale treatment trials could be designed for late stage and chronic Lyme patients which address specific treatments in relation to research about the organism's behavior in vivo (rather than continue longer courses of the same antibiotics which are already outlined in the guidelines).

"Anecdotes of recovery with nonstandard treatments are shared widely, but you can't base scientific recommendations on anecdotes."

This is true.

However, one can look at well-documented and detailed case studies of patients and use those to develop larger scale studies and clinical trials. There are already doctors out there who have such case studies who could help develop and design these trials.

Why don't we have some additional trials, rather than beat around this obvious bush?

And why not begin conducting trials for treatments which address immune dysregulation due to Lyme disease infection?

This would help patients without using antibiotics and could prevent them from developing an autoimmune disorder.

And maybe perhaps also conduct studies and trials with a two-pronged approach that handles infection and dysregulated immune responses?

"It is incumbent upon the proponents of continued and nonstandard treatment for Lyme disease to do the research needed to demonstrate the position that they so strongly believe in."

What does this statement mean? The assumption I would make in reading this is that it is that proponents = patients suffering with persisting symptoms (of which some have found some relief using antibiotics longer term, regardless of what mechanism is at work in their use), the doctors who are willing to treat them longer term, organizations which support such patients and doctors (Lyme disease advocacy groups), and some researchers who have studied Bb and think it can persist in the host post-antibiotic treatment.

Does this mean that the CDC's expectation is that such proponents fund their own research for chronic Lyme disease (or what they'd call Post Lyme disease) rather than having other major research institutions look into the cause of persisting symptoms and treatment for patients with such symptoms?

"In the meantime, there are many doctors and laboratories that operate a "for profit" business diagnosing anyone with Lyme disease."

And?

If I would have received a letter with this statement, I would have been expecting some additional notice about which laboratories and doctors these are and what evidence they have that they diagnose anyone with Lyme disease. Instead, as a patient I am left wondering who these doctors and laboratories are and what evidence the CDC has against them.

"The reason some clinicians have been brought up on disciplinary charges is not because they operate outside the mainstream, it is because patients have suffered dire consequences from their experimental treatments, and some have even died."

Again, if I would have received a letter with this statement, I would have been expecting some additional notice about which clinicians were brought up on charges and what the evidence was for such charges. I would be concerned about the circumstances of other patients' deaths, and in general, wonder why I had received a letter from the CDC mentioning this without further qualification or details.

If the purpose of the letter was to inform me out of concern, it hasn't because it hasn't supplied such information in order to educate me about such laboratories and clinicians. It has only served to try to instill fear in me about potential unknown doctors I haven't seen and laboratories I know nothing about.

I'm already sitting here, having known I was bitten by a tick, even saved said tick, and had a textbook case of Lyme disease; I've already been tested by a certified laboratory for Lyme disease and coinfections.

I'm not "one of the multitudes who was misdiagosed with Lyme disease and treated for a disease I never had" - whoever they are.

I don't know how many people actually do fall under this category - I have no data on this, though I would like to know about the specific data the CDC has on this population. It would be most informative.

Anyway, if I had gotten this letter, I would have found it dismissive of my condition and of me as a patient - whether my condition was labeled Chronic Lyme disease, Post-Lyme disease syndrome, Post-treatment Lyme disease, or something else entirely.

I would have found it scientifically useless, as there are no citations and explanations to back the CDC officer's claims.

I would have found it medically useless, as it doesn't point me to any effective treatments and clinical trials that have just finished along with an opportunity to sign up for a current or future clinical trial or study.

I would have found it lacking in hope and denigrating, as it is blatantly telling me and others (disabled, many unable to work - not to mention broke and without microbiology labs or training) that we must somehow conduct our own research for the condition that the mainstream medical community has coined for me (either Post-Lyme disease syndrome or Chronic Lyme disease).

To top it off, I would be pissed off I'm being warned about certain labs and doctors without any more information concerning who they are and without any evidence they have done something wrong.

As a patient, all this would do would provide me with the additional work of having to do the difficult job of investigating every single doctor and laboratory out there who tests for Lyme disease - a job which no patient should be expected to do.

This is, by and large, a shitty and useless letter to receive as a patient.

In tone and purpose, it starts out with a statement of sympathy, only to move through self-informed justification for its own position and onto assumptions about the patient population - then onto trials with negative outcomes and instilling fear about unidentified doctors and laboratories.

If I were working for the CDC and had to write a letter to a Lyme disease patient (acute, late stage, chronic, or post-Lyme) - even with inherent differences in position between the official CDC/IDSA Lyme disease guidelines perspective on Lyme disease and that of the Lyme patient community - I would have done it differently.

If any CDC officer happens to see this and read this, I want them to know that if the above letter is in fact an official and genuine email that was sent to a patient by your institution, that you could have written it differently and with more compassion for the patient who receives it.

You are writing to a person who may have been entirely devastated by their illness (whatever it is) and has lost everything - their health, their marriage, their job - and they took the time to ask you for feedback and help.

If your hypothesis is so strongly supported, what research are you doing that shows support?
If your autoimmune hypothesis is so strongly supported, what research are you doing which helps those patients who are suffering from this condition?

What they need to hear about is what is right and true, high quality evidence backing such claims, and to be offered information that is helpful and supportive. They need specifics about what is being done to investigate their condition further and improve their quality of life. And they really don't need some ludicrous suggestion that they need to investigate it themselves.

It's scientists' job to educate people and light a candle in the darkness. To solve controversies. To provide a clear trail of supportive evidence for a hypothesis, and then provide high quality evidence to support that hypothesis for those who are affected by that hypothesis which provides the current foundation for patient treatment decisions.

If your hypothesis is so strongly supported, what research are you doing that shows support?

If your autoimmune hypothesis is so strongly supported, what research are you doing which helps those patients who are suffering from this condition?

Where are the positive outcomes from random double blind controlled studies?

If this is for real, I'm asking these questions for the person who wrote the original letter, whatever erroneous information may have been in it. I'm asking for other patients I don't even know. And finally, because I have some self-interest in this, I'm asking for me.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

Read More

4 Daily Kos Posting Today At 7PM EST

Will be posted at 7 PM EST (6 PM CST,  4 PM PST, 1 PM HAST).

Tonight's entry will be a rant about polarized discussions online about Lyme disease.

To read all the Lyme Disease Awareness diaries for the month of May at Daily Kos, check out:

http://www.dailykos.com/blog/Lyme%20Disease%20Awareness

My post might lead to some disagreements and insights - either way, I hope discussion is fruitful (in a good way).

Read More

3 Pam Weintraub at 2010 IOM: on being in the middle

I realize that in my rush to write extensively about the Chicago Tribune's *clears throat* journalism... I hadn't mentioned what brought my mention of Pamela Weintraub to my blog in the first place, and why what she said is such an important part of gaining acknowledgement of Chronic Lyme Disease and beginning to understand the complexity of tickborne illnesses.

During the October 2010 Institute of Medicine (IOM) workshop, Pam gave a presentation and told of her own personal experience with Lyme Disease, an experience which has been written about in Cure Unknown and also issued as a written statement for the IOM.

This story - as usual - is gripping and hits me to the core, as it does many Lyme patients. But as much as that was gripping, what was said during the Q & A session afterward was more thought-provoking because I hadn't heard it before:


Lonnie K  (IOM mod) asked:

"Question for Pam: What do we need to do to find common ground and move forward?"

And Pam said:

"This very polarized fighting is the most destructive thing out there and #1 reason so many people are so sick out there and we’re still here. So many other journalists have capitalized on the sound bites of either side and the drama. For me that’s a distraction to the story. 

When I went out and interviewed many people of high expertise, most scientists working with this on a deep level were very intelligent, thoughtful people who had very nuanced ways of looking at this. And in the nuance I was able to see a path. But when you pull back out and read these articles about the controversy, it becomes shouting that drowns out the actual complexity and nuance... and work we need to do. 

I don’t know what can be done. Patients are very angry, I understand, look what happened to me with a classic case in my son and I had to go to doctor to doctor. There was such a political sense of staying away from Lyme or finding other diagnoses first. I don’t know how to heal this. I think there are people who can work together to heal this, but they’re not the people at the extremes... they’re the people in a center space. I wish everyone could get there together because then perhaps patients could be healed. This can’t be dumbed down, it’s not going to get us anywhere."

This.

This entire response that Pamela Weintraub said where the Lyme controversy can only be dealt with by those who are coming from the center space, or middle.

I want to know how to find that center space or middle, too, if that is what is going to get me and others out of this mess.

I know some of you absolutely love Pamela and she did a tremendous amount of work on Cure Unknown and help in getting the Chronic Lyme patient's story across. (You should know, by the way, that she does not use the term "Chronic Lyme" for herself, and I may follow suit, regardless of the familiarity it brings - read about it in comments here.) I also know that some of you who are reading this blog might find her to be an unreliable source of information because she is a science journalist and not a scientist, and many a science journalist has oversimplified the facts or missed a crucial piece of information that would change the entire message of their article had they published it. Everyone is entitled to their opinion, of course.

That said, I think Pam is right about this one: Fighting and polarizing this issue for years - and I mean years - has not gotten people very far in terms of acknowledgement and treatment. 

I'm glad a few bills got passed to protect doctors who prescribe long-term antibiotics - that certainly helps patients in some ways - but it is a case of too little, too late, for many patients. Including patients who should be getting their treatment covered by insurance and not selling their homes to finance it. 

How do I think we can work from the center or the middle? Difficult question. I'll take a stab at it, though.

I think it requires taking a step back and assessing where we are as patients, activists, advocates, and those standing alongside them. What are we doing? What are our goals? How do we spend our time?

It requires knowing who and what your detractors believe and why. What is at stake for them? Does all of the IDSA believe as the guidelines panel does, or do some of that 8,600 have doubts or never even really learned about Lyme Disease and other tickborne infections?

I think it requires uniting all the patients and their advocates and working toward a common goal, not twenty or two hundred different ones, all with their own personal bent.

The AIDS community was able to rally their efforts together for a cure. In ten years they ended up with a treatment that has extended their lives so that many are now living long lives HIV+; working and playing while managing their condition. And there is ongoing work on a cure, though they're not there yet.

Ten years.

We've been at this shit with Lyme for what? Over thirty years? Beginning with Polly Murray?

It's been said that the AIDS community could only get the attention for their disease because it was immediately clear it was sexually transmitted and transmitted through transfusions, whereas Lyme Disease is not (though I know there is speculation about both of these, let's put these issues aside for the time being - it's not really relevant to where this is going right now). And this may be true, but this is not a good reason for Lyme Disease and other tickborne infections to not get attention. 

The one thing the AIDS community had that the Lyme community currently doesn't have is enough commonality of direction. Each group has its own drives towards somewhat different goals (though there is overlap) and groups are not united enough towards one specific goal. Unfortunately, the one thing the Lyme community currently has that the AIDS community did not have is one select group of panelists setting the standard of care for Lyme Disease and other tickborne illnesses worldwide - and not even just the US, which is its intended jurisdiction.

If what Dr. Willy Burgdorfer says is true - that 30 years of research has produced the same thing  - nothing - and the development of new serology has to be started from scratch; if he and other researchers say that Borrelia can persist and symptoms can vary based on genotype - then what is needed is more research and for the word to get out about existing research from the researchers themselves.

Science is what turned things around for AIDS patients. Science can turn things around for Lyme Disease and tickborne infection patients as well.

I don't think anyone should have to wait for a cure to continue treatment, and as long as we have LLMDs there is a shot at getting it. But I do think in order to continue to justify the need for treatment (I know, crazy isn't it? People need treatment now!) and to make it more widespread, that the first goal should be to make sure the case for persistence in humans and its significance is beyond questioning. 

Otherwise, there may always only ever be a handful of LLMDs treating this. Is this what everyone wants for their children? For their family? For their friends? 

I'm concerned about it, because watching changing epidemiological Lyme Disease (and other tickborne illnesses) data for humans and animals together is scary. It's only going to get worse as time goes on. And then we'll have what... even fewer doctors treating even more patients? Or worse - just more people who are sick and without treatment?

Instead of beating at the brick wall that is the guidelines panel, look for Volkman and others who have rejected it. How about Dr. Luft and Dr. Barthold's new research? How about more research that's already been out there for ages that needs to be brought to light?

How about pushing for clinical trials with larger patient populations - to prove persistence in human patients, and not just whether or not specific long-term treatments with antibiotics will work or not? 

Those four clinical trials with small sample sizes that get cited ad nauseum? What if they weren't about long-term antibiotic treatment, which many medical professionals are loathe to touch? Have trials that show persistence first. Incontrovertible proof.  

Then it will be much easier to get better-designed long-term antibiotic trials done and push for research for better antibiotics and other medications. Antibiotic R & D has been incredibly behind the curve in years and that alone is going to cause problems in the future.

Heck, I'm about ready to sign up and have someone take a biopsy from me from several places - those places are hurting anyway and that isn't going to change any time soon from my experience!

Instead of tearing at your neighbor there on Lyme-whatever-group who is arguing with you about the value of detoxing and bouloke or Samento, put your enmity aside and work towards the issue of persistence. You can still make whatever choices you're going to make. But I think this one is going to be a big one to not duck out of. Because once peristence and its significance is established beyond a doubt, then all the naysayers on the Tribune and the panel and science blog and god-knows-where-else can STFU and there will be support for antibiotic and antiprotozoa treatment, where and when it is needed. And insurance should cover it, and doctors will stop getting cited and disciplined for treating.

I think this is THE issue: persistence. 

Not whether or not you need to challenge someone's posting because they said something about treatment you disagreed with, or because you want to use an herbal treatment like Buhner's or Zhang's protocol instead of antibiotics because you can't afford the antibiotics, anyway. 

All those issues? They are detracting from the main one underlying it all. All those issues will still be there as you live your life day to day, but in the meantime progress will really be made if this one issue - persistence - is worked on. 

And all those issues? A lot of those issues are bound to become non-issues if everyone's access to treatment improves and more research is done to develop better antibiotics and other technologies to stop persisting Borrelia and other infections from wrecking havoc on your body. And if it turns out that there is an immune dysregulation process going on, that will probably also be confirmed in the process of looking at persistence. But it isn't going to happen unless research is encouraged in that direction.  Otherwise, it's just going to remain someone's seemingly unsupported speculation of some panelist's wet dream of what is happening in "Post Lyme Syndrome" until then.

Read More