9 Persistence and Politics In Chronic Lyme Disease Research

The story of the controversy over Lyme disease research and treatment guidelines seems so strange to me, I wouldn't have believed it if I hadn't gotten Lyme disease and ended up looking into it myself.

I really thought when I first got bitten by a tick, got a rash, and got sick that it was going to be easy: take 2-3 weeks of antibiotics, get better, and go back to work. I had no idea at the time that one tick bite was going to change my life forever, and lead me down the path to learning about some controversy I previously knew nothing about.

And as much as I've learned about the Lyme disease controversy in several years, I still don't understand it.

A recent set of articles published by The Poughkeepsie Journal about emails requested under the Freedom of Information (FOI) Act - emails exchanged between members of the Infectious Disease Society of America (IDSA), Centers for Disease Control (CDC), and others - inspired me to write, but these, too, do not help me make any more sense of the controversy.

A Primer On The Lyme Disease Controversy

Before I proceed, for the uninitiated, here's the controversy in Lyme disease in a nutshell:

Many patients and some doctors believe that three weeks of antibiotic treatment is not enough and some patients need longer term antibiotic treatment. They think the bacteria, Borrelia burgdorferi, which causes Lyme disease can survive the recommended amount of antibiotics advised in the IDSA's guidelines. The IDSA and other organizations think that the recommended amount of antibiotics is adequate in the vast majority of cases, and giving patients longer courses of antibiotics is generally regarded as a bad idea. They have stated that chronic Lyme disease* is most likely a post-Lyme syndrome which is autoimmune in nature. The IDSA Lyme disease panelists view these patients' doctors as acting irresponsibly and taking unfair advantage of people who are most likely sick with something other than Lyme disease. The doctors and their patients disagree vehemently with the IDSA panel's position. It has become very heated from there.

* It should be noted that the use of terms such as "chronic Lyme disease", "post-Lyme disease (syndrome)", and "post-treatment Lyme disease" are often used interchangeably and can cause confusion. "chronic Lyme disease" has been used in the past by American researchers to mean "chronic infection" and continues to be used by the NIAID in the US. In Europe, "chronic Lyme disease" is used to mean "late stage infection". In America today, "chronic Lyme disease" has been used by the Lyme disease patient community to mean a chronic infection with Lyme disease Borrelia bacteria - where the patient has received at least some antibiotic treatment yet continues to have symptoms. "Post-Lyme disease (syndrome)" has been used by the IDSA Lyme disease panel and its colleagues to denote a presumed autoimmune-like condition that patients can develop after having a bonafide case of Lyme disease. "Post-treatment Lyme disease" is used by some doctors and researchers as a form of "non-partisan" terminology that tries to side-step the infection/autoimmunty debate for causation. (Sorry for any confusion. I'm confused too sometimes.)

Now that you have the controversy in a nutshell, getting back to those articles on those emails requested under the FOI…

Journalist Publishes Lyme Disease Academic Physician Emails Released Under Freedom Of Information Act

Mary Beth Pfeiffer, journalist working for The Poughkeepsie Journal wrote that Kris Newby placed the FOI request for the emails five years ago and only recently had her request fulfilled. Ms. Newby received copies of 3,000 individual emails under the FOI Act, of which several hundred were almost or entirely whited out, and shared them without condition with Ms. Pfeiffer for use in her articles.

In the two articles I'm discussing, "Interactive: Lyme, the ties that bind" and its companion article, "Chronic Lyme disease: Is it real?" - and one editorial letter in response to them by Dr. Phil Baker, Executive Officer of the American Lyme Disease Foundation (ALDF) - different sides of the debate are touched upon.

While Ms. Pfeiffer's position in her articles is that these FOI emails provide evidence of a possible unethical relationship between the Infectious Disease Society of America (IDSA) and their colleagues, the Centers for Disease Control (CDC), and the National Institute of Health (NIH), my focus here is not going to be on speculation about those relationships but instead are going to be about the need for clinical trials, how funding for Lyme disease is prioritized, patient relations, stagnation in science research, and questionable scientific conduct.

I'm going to be taking a few excerpts from Ms. Pfeiffer's articles, the FOI emails to which they refer, and Dr. Baker's editorial letter, and making comments about them.

But even more so? I'm going to be asking questions about them. Lots of questions - because to be frank, these emails and the content within them underscore the reasons why I don't want to get in the middle of the Lyme disease controversy and would much rather read about Borrelia spp. microbiology and immunology.

To me, learning about the science directly from research makes sense. The Lyme disease controversy? It doesn't make sense. And over a number paragraphs, I'll explain why - and tie these articles, emails, and Dr. Baker's letter in with information from other sources.

ILADS Should Conduct Clinical Trials Based On Clear Patient Criteria And Their Own Treatment Approaches - But Can They?

One notable passage from Dr. Phil Baker's editorial letter in response to Ms. Pfeiffer's articles got me to thinking:

"I stated that the ILADS guidelines were deficient in that they: (a) did not provide a precise definition of “chronic Lyme disease” as a clinical entity, so that it could be distinguished from other non-infectious medical conditions (e.g., chronic fatigue syndrome, fibromyalgia, etc.) with similar symptoms; (b) failed to provide unequivocal clinical evidence to indicate that patients suspected of having “chronic Lyme disease” actually have a persistent borrelial infection that justifies antibiotic therapy; and (c) failed to demonstrate, from the results of published, peer-reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is not only beneficial but also safe for the treatment of “chronic Lyme disease”.

While I do not like the same things other patients have complained about which Dr. Baker said within the FOI released emails - including his referring to patients as "Lyme loonies" (and I think he owes patients an apology for that) - I think it's important to examine this editorial comment because it is worth further discussion. And it lead to me ask the question, "Why doesn't ILADS conduct clinical trials?"

I asked, looking at the bigger picture and realized once I did, I could see where it would lead:

If you ask the vast majority of doctors and scientists who have no ties to the IDSA, they will tell you they, too, would be more comfortable using treatments which have been shown to be effective in clinical trials - and would likely refrain from making most treatment decisions without such evidence.

But beyond this, if ILADS conducted their own clinical trials based on patient criteria that they clearly define and treatment approaches they use in their own clinics, then once the evidence was provided which showed their effectiveness to others, many of the grievances patients have had about how chronic Lyme disease is handled would fade away:

• Primary care physicians across the country could treat chronic Lyme disease using ILADS' methods because they would be assured the methods are effective.
  
• Patients would not have to travel long distances to see a small number of doctors who specialize in treating chronic Lyme disease.
  
• Patients could see a doctor who is in-network under their insurance plan and have the cost of office visits covered or mostly covered.
  
• Insurance companies would stop denying coverage for specialized antibiotic treatments because they would have new data to rely on which supported new antibiotic regimens.

The situation as it currently stands is that patient advocacy organizations have petitioned individual states to pass laws which protect ILADS doctors (actually any doctor) from losing their license to practice solely because they administer long term antibiotics to patients with chronic Lyme disease. This legislation, which has been hard won by the efforts of many advocates and activists, hasn't changed the playing field in terms of increasing patient access to long term antibiotic treatment if that was one of the advocates' goals. In those states which pass such legislation, few new doctors prescribe antibiotics longer term.

This reality means mostly only ILADS doctors continue to practice long term antibiotic treatment for chronic Lyme disease, which encourages an ongoing wave of criticism from various medical organizations, pundits in the media, and those skeptical about the existence of chronic Lyme disease as a persisting bacterial infection.

The criticism is generally two-fold, and boils down to ILADS doctors taking unfair advantage of sick, vulnerable patients by operating concierge-style clinics where insurance is not accepted and concern about the growing problem of antibiotic resistance.

Those who defend against this criticism - advocacy groups and patients - say ILADS doctors have saved their lives or at least changed them for the better.

I would be one of them, too - my obvious EM rash went misdiagnosed as an allergic reaction to a tick bite and the doctor discarded the tick which had bitten me by tossing it in the trash without sending it to a lab. This when I had been bitten in a known endemic area by the state health department. The family physician I saw was practically useless, and I ended up at an ILADS doctor's office by referral after I had gotten so ill I could barely read and write, barely walk, and had trouble tracking conversations. (I'm better now, thankfully. Not normal - but better.)

It was never my plan to end up in an ILADS doctor's office, any more than it was the plan for one woman I had talked to on Twitter to end up getting her best Lyme disease medical advice from a PhD at her local university because her own local MD had failed her. (Something is wrong when I tally up the number of times I've heard stories similar to ours. Why are family doctors missing what would be considered textbook presentations of Lyme disease?)

This experience we share may be one reason Lyme disease advocacy groups and patients are not so proactive about pushing for clinical trials by the doctors who are helping them. If they've already had their diagnoses missed by family doctors who should be well informed about the symptoms and signs of early Lyme disease - and their infection went late stage - patients could have a lack of confidence in giving family and urgent care physicians the power to make medical decisions about chronic Lyme disease.

Patients when asked will tell you they see ILADS doctors because they are already doing their best to take care of them and help them get better when nobody else would. And they support them, saying some members of ILADS have treated chronic Lyme disease since before ILADS even existed and have many years of clinical experience working with patients with tickborne diseases - diseases which other doctors have been either unable, unknowledgable about, or unwilling to treat.

If ILADS seems to have a monopoly on treating chronic Lyme disease patients, how much of it is based on how poorly other doctors respond to patients with early cases of Lyme disease - such as my own case? How much of it is based on ILADS doctors developing a reputation for their treatment based on seeing patients who mostly have suffered from tickborne diseases - therefore having specialization in their practices? How much of it - critics have inquired - is because ILADS wants to hoard the care of such patients all to themselves in order to make a tidy profit?

One of ILADS' more vocal doctors, Dr. Daniel Cameron, indicated he isn't interested in ILADS having a monopoly in treating chronic Lyme disease. He made this remark on a Morning Call chat debate back in 2011 [12:38 mark], when he and Dr. Lawrence Zemel of the IDSA (a guidelines co-author) took questions from the audience:

"We need many more physicians to diagnose and treat chronic Lyme disease. We will have less chronic LD if they are recognized early. Finally, more physicians will offer more options for patient within HMO's."

Dr. Cameron's desire seems to closely reflect those of what many chronic Lyme disease patients would like to see: access to more doctors who know how to diagnose and treat their condition, earlier diagnosis, and access to treatment options within the HMO system.

This hardly sounds like a doctor who wants to monopolize the treatment of patients so he can make a buck. But those who spend any amount of time watching the Lyme wars scroll across their screen know that soon enough, someone will say he only made such a statement because politically it sounded good - not because he meant it with sincerity.

And this is one strong example of why, by the way, I've gotten tired of reading and talking about Lyme disease when it comes to its sociopolitical aspect: Everything anyone says, no matter which side of the Lyme disease treatment debate you are on isn't to be trusted. This is, after all, a Lyme war and there are whisper campaigns, there are rumors; there are truths and half-truths - and good luck sorting them all out along with who really said what from your armchair at home.

But I digress.

I think that if Dr. Cameron and his colleagues want to see more doctors diagnose and treat chronic Lyme disease the way he does, he is going to have to find a way to conduct clinical trials in order to provide HMOs with an incentive to change their approach on how they diagnose and treat chronic Lyme disease.

An important issue, of course, is whether or not Dr. Cameron and his colleagues at ILADS would be in any position to conduct the kind of clinical trials they would like to have based on their own treatments.

Over the years, I've heard a few Lyme disease researchers complain that certain kinds of Lyme disease projects get selected for grants, again and again, and few projects are novel and bring in new talent.

This issue was briefly touched upon by Ms. Pfeiffer in her articles as well:

Ms. Pfeiffer reported that one Lyme disease researcher said to her:

"How many studies have we got on coronary disease and cholesterol in the last 30 years? Thousands. We’ve got five with Lyme disease.” (Editor's note: The "five" refers to antibiotic treatment trials only - there is a lot of Lyme disease related research.)

The scientist did not “want to be identified with either side of the controversy,” and, like others, said it was difficult to obtain government research funding for scientists with alternate theories.

Dr. Stephen Barthold, a Lyme disease researcher from UC Davis stated at a House subcommittee hearing last July:

"Because of firmly entrenched opinion within the medical scientific community, evidence of persisting viable but non-cultivable spirochetes is slow to be accepted and research proposals submitted to NIH that feature persistence following treatment are likely to receive prejudicial peer review in the contentious environment of Lyme disease*. Negative comments by peer reviewers of grant applications in the current financially austere NIH climate result in unfundable scores, if they are scored at all (triaged). I have no personal stake in this issue any more, as I am retiring within a year. 

In my opinion, for such important and controversial studies to go forward, NIH will need to publish a specific call for applications, known as a “Request for Applications” (RFA), that requests research on the biological significance of persisting spirochetes following antibiotic treatment.
________________________________________
* a major weakness cited by a peer reviewer in a recent unfunded R01 application:
“The lay public that has so far denied the validity of scientific data will misunderstand the significance of…[persisting non-cultivable Borrelia burgdorferi]…and use it as additional evidence to support the idea of treatment-resistant Lyme disease.”

My thoughts on that footnote on Dr. Barthold's submitted testimony is that if the lay public has a misunderstanding of the significance of persisting non-cultivable Borrelia burgdorferi and how it does or does not support the idea of treatment-resistant Lyme disease, then researchers and science journalists who report the significance of such findings need to improve how they communicate with the public about them.

Another goal I think they should have is to communicate the science clearly while also giving the patient community reasonable hope and evidence that projects are in the pipeline which will help them based on such findings.

Right now, neither seems to appear to be happening as often as it should - and further educational outreach and positive patient engagement is in order.

Separately, Dr. Baker has exchanged comments with me on the issue of more antibiotic treatment trials last February on lymedisease.org, and informed me that the NIH-NIAID will most likely never do any long-term antibiotic treatment studies for chronic Lyme disease again:

"Since I have retired from the NIH, I don’t know what their plans are for future research on Lyme disease. But, I can tell you that about 90% of the research that NIH supports is driven by proposals submitted as investigator initiated grant applications — the RO1 grants. So, if anyone has any good ideas, they are always welcome to submit a grant application, although competition for grants is very keen and only about 25% of all applications submitted are funded. One has to be persistent as most of my colleagues are to make it in science. Although I am not opposed to conducting another clinical trial, the odds for such a proposal getting funded are rather slim, especially since NIH has already supported 4 trials indicating that extended antibiotic therapy is not beneficial. Obviously, I would like to see more work done on whether the “persistors” [sic] Bockenstedt and Barthold noted in mice are infective and can cause disease, as well as whether they can stimulate a local inflammatory response. But, I think we would be making a big mistake by not considering other possibilities as I’ve mentioned in a recent article."

He thought chronic Lyme disease studies should be conducted working from different perspectives (which I agree with in principle) but I have yet to witness any of such studies actually occurring which apply to treatment - nor are any listed on clinicaltrials.gov - and I check periodically.

Given that the NIH-NIAID is now suffering under the burden of sequestration, cuts have been made to research - including in areas which were already struggling for funding. I have a difficult time seeing how anyone doing research on Lyme disease is going to meet their projected goals for the future - whether their research is about long term antibiotic treatment or immunological factors involved in chronic Lyme/post treatment Lyme disease.

With this current state of affairs it's the patients who are going to suffer the most.

What Does The IDSA Lyme Disease Guidelines Panel Think Chronic Lyme Disease Is, Anyway?

Here are a few quotes from the IDSA Lyme disease guidelines panel members/colleagues' FOI emails from 2007 Ms. Pfeiffer published, stating they don't really know what chronic Lyme disease is:

"I believe that it (CLD) is primarily psychological (but there must be biochemical correlates) and I think it is a bit like post-traumatic stress disorder…One other post infectious syndrome that might be comparable is PANDAS." - Dr. Eugene Shapiro 

"The functional somatic syndromes is an excellent reference. I don't think I would mention PANDAS." - Dr. Henry Feder 

"I doubt very much that autoimmunity or molecular mimicry has anything to do with post-Lyme disease syndrome. It is most like chronic [fatigue syndrome]." - Dr. Allen Steere

None of them think chronic Lyme disease is caused by a persisting bacterial infection that survives 2-3 weeks of antibiotic treatment - at least not in these specific emails which Ms. Pfeiffer has made public.
But neither are they in agreement about what exactly chronic Lyme disease is, either. One additional statement which has been made publicly by IDSA Lyme disease guidelines members was the possibility that post-Lyme disease syndrome is an autoimmune-like disorder.

Six years have passed since the emails' authors shared their ideas of what chronic Lyme disease is or isn't. Has anything changed since then that we can find on record? For that matter - has anything changed since 1982?

Lyme disease's causative agent, Borrelia burgdorferi, was discovered in 1982 and it wasn't long after that that doctors began noticing patients didn't always get better after having one course of antibiotics. Or even two courses. Unlike other conditions which have been labeled by others as "being invented by the internet", the same cannot be said about chronic Lyme disease. Patients who continue to have symptoms after early or delayed antibiotic treatment have been around for a long time, and over 100 Lyme disease support groups were already in existence by 1992.

One major advocacy group had an electronic newsletter distributed from Lehigh University and no web sites; only 6,000 people knew this list existed - far fewer than the number of people who have heard of Lyme disease and chronic Lyme disease today. This was before Lyme disease cases greatly escalated in number (and by extension, more patients with persisting symptoms as well).

If Lyme disease has been easy to diagnose and treat, why did we have over 100 Lyme disease support groups back in 1992? Good question. And it's a good question to ask what has happened since then, and why there are even more support groups today, multiple advocacy organizations, protests, rallies, pushes for legislation, and controversial films like Under Our Skin being produced.

When I read a transcript of a Senate subcommittee hearing on Lyme disease held back in 1993 - that's twenty years ago - it's apparent the same sort of issues doctors, patients, and researchers had back then are the same ones they have today (Copies of original hearing transcripts with commentary here: part one and part two ).

And when I see Ms. Pfeiffer write about the amount of NIH grant money that has been going to the same small group of researchers over and over, year after year, and they happen to be the same people (or their colleagues) who make statements about what chronic Lyme disease is or isn't, I have to wonder why they didn't put more money towards researching this chronic condition years ago?

And if they did put some money towards it - why it has been so non-productive an enterprise from the patients' perspective?

Why are we still stuck?

One reason why I am invested in answering these questions is apparent and biased: I'm a patient. But the other reason I am invested is that I'm genuinely curious why there has been no obvious progress on my condition and the development of more treatment studies.

The entire scene seems particularly illogical when you realize the one point of agreement IDSA Lyme disease guidelines panelists' share with most doctors in practice now - including even ILADS doctors:

Lyme disease which is treated with antibiotics early leads to a positive outcome. In terms of helping people with this disease, those who get an erythema migrans rash (the bull's-eye) and flu-like illness are treated early and go on to feel better, return to work, and go back to school. They don't NEED any further help from a doctor. They're fine.

It seems to me the sticking point - and the issue which needs more attention - are those patients who are NOT fine, and do NOT go on to be fine. Shouldn't they be the ones who should be getting the lion's share of research, to try to understand why they are not doing well and their symptoms persist?

When it came to patients enrolled in the Klempner clinical trial (a long term antibiotic clinical trial for chronic Lyme disease patients conducted over 10 years ago), researchers said the condition could be equally disabling as congestive heart failure and osteoarthritis.

Knowing this, you would think the IDSA Lyme disease guidelines panelists would make it a priority to help such patients get better - or at the minimum, write guidelines which acknowledged the range of severity of their condition based on hard data and made actionable suggestions as to how to improve patients' quality of life. Instead, the 2006 guidelines state that the percentage of patients with this condition that suffer from pain is no higher than that found in the population at large and there is no suggested treatment advice.

When the Klempner trial was discontinued in 2001, Dr. Phil Baker said:

"The antibiotic treatment component is only one piece of NIAID's comprehensive clinical studies on chronic Lyme disease. These studies have yielded a considerable amount of new information. We intend to characterize the patients enrolled in the study as thoroughly as possible to learn more about the mechanisms involved in chronic Lyme disease," Dr. Baker adds. "The knowledge obtained from such studies should be of immense value in developing new, more promising approaches for treating this disease."

It's been twelve years since Dr. Baker made that statement. Twelve. Where are the "new, more promising approaches for treating this disease"?

Where Are The Immune-Mediated Treatment Studies For Patients Who Cannot Take More Antibiotics?

While some patients have given ILADS high accolades for saving their lives and changing them for the better due to longer term antibiotic treatment, other patients have not been as successful following the same plan. Those who support the outcomes of clinical trials done to date on long term antibiotic use for chronic Lyme disease would say hearing this is not surprising - though many patients would argue that the outcomes of those trials are not the full picture.

Regardless of whichever side of the debate you are on when it comes to long term antibiotic use, the truth is there are patients who either have not experienced much improvement on long term antibiotics or they could no longer take them due to side effects, allergies, or contracting C. difficile. These patients continue to experience symptoms of varying severity, and for them there must be other treatment options. So far, antimicrobial herbal tinctures are their first remedy to try, followed by increasingly ineffective and unproven treatments including amongst other things, Rife machines.

Is this the best that can be done for them? What about more evidence-based treatments?

If the IDSA Lyme disease guidelines panel and their colleagues think they have more evidence to support patients' persisting symptoms being caused by an autoimmune-like condition rather than a chronic infection, then where has their involvement and dedication been when it comes to the patient subgroup mentioned above?

Why hasn't the IDSA Lyme disease guidelines panel or their colleagues applied for grant money to do research on treatments which involve immune mediation or addressing autoimmune disease caused by Lyme disease?

The irony in Lyme disease research now is that a Lyme disease advocacy group - the kind of group which is typically reported about by many in the media as pushing for legislation to protect ILADS doctors and force insurers to cover long term antibiotics - has invested grant money in the development of the first novel immunological treatment for chronic Lyme disease, VGV-L.  VGV-L is a targeted peptide therapy developed by VG Life Sciences, Inc. which has already met pre-IND requirements of the FDA and is expected to enter clinical trial stage later this year.

The development of VGV-L has been funded by the Lyme Research Alliance, a patient advocacy group - and not Dr. Baker and his colleagues at the IDSA. And yet, VGV-L addresses immune dysregulation in Lyme disease - research he should be able to support as someone who does not think chronic Lyme disease is caused by ongoing infection.

Yet there has been not a peep, not a press release, not one scientific article or review from Dr. Baker and his colleagues at the ALDF or the IDSA about VGV-L and how based on the scientific understanding of chronic Lyme disease to date, it might or might not work.

And if Dr. Baker and his colleagues think that chronic Lyme disease is similar to fibromyalgia and chronic fatigue syndrome then why haven't they conducted clinical trials for chronic Lyme disease on low dose naltrexone - similar to the successful Stanford University studies using low dose naltrexone for fibromyalgia? Even now, some chronic Lyme disease patients are being prescribed low dose naltrexone off-label to help with managing pain - and some are reporting improvement.

There has been no positive engagement between the IDSA Lyme disease guidelines panel and Lyme disease patients for years - even with just this subgroup of chronic Lyme disease patients who either cannot handle additional antibiotic treatment or for whom there is evidence their symptoms may actually be more immune-mediated.

If I as a patient want to know more about post-treatment Lyme disease and how to treat it, and my doctor and I actually think my remaining symptoms are due to post-infection damage instead of persisting infection, there is no obvious resource for us to turn to.

There simply isn't enough research being done by anyone that addresses this condition. We are driving blind, and making it up as we go based on trial and error and models of other neuroimmune and neurological conditions, and by talking to other doctors and patients who are navigating the same issues.

Why ILADS And The IDSA Lyme Disease Guidelines Panel Can't - Or Won't - Meet In The Middle?

While I have wondered why the IDSA Lyme disease treatment panel dismisses the idea of persistent infection when it comes to Lyme disease - I've also wondered why a number of ILADS doctors and patients dismiss there being an element of immune dysregulation and autoimmune response where Lyme disease is concerned?

And it seems no one has considered the possibility except for a few researchers - or it's at least not discussed online much - that infection and immune dysregulation in Lyme disease could occur concurrently.

One possible combination treatment which could address both infection and immune regulation which could be used in clinical trials that both ILADS and the IDSA Lyme disease guidelines panel may want to consider is the use of IV ceftriaxone and filgrastim to treat Lyme disease patients who have persisting symptoms past initial treatment.

Dr. Isabel Diterich has used both filgrastim and ceftriaxone to treat a stubborn case of late stage Lyme disease, and the patient completely recovered and reported no relapsing symptoms in the following eight years. Additional studies were completed in animal models which showed some promise.

Such studies would involve a shorter total antibiotic treatment than any of the clinical trials for chronic Lyme disease conducted to date at the NIAID. Yet no one that I know of outside of Dr. Diterich and Dr. Albrecht Wendel has commented on this potential treatment - and neither ILADS nor the IDSA Lyme disease panel has mentioned it to my knowledge.

It's not as if getting more testing of this combination hasn't been tried before, either. Like those in the chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) community, with patients and doctors who lobbied hard to conduct clinical trials on rituximab for CFS/ME patients, Dr. Wendel tried to encourage Amgen to get involved in clinical trials to treat chronic Lyme disease patients using filgrastim alongside ceftriaxone. Amgen responded that they were not interested because the market for the drug was too small.

As time goes on, I wonder with each passing year that Lyme disease cases rise if this will continue to be the case. I don't know.

Both the IDSA Lyme disease guidelines panel and ILADS could have investigated this treatment approach, combining both antibiotics and immune mediation to see if it improved treatment outcomes for a higher percentage of patients. Instead, we're left with this ongoing debate between the ILADS promotion of long term antibiotic treatment because chronic Lyme disease is caused by infection versus the IDSA guidelines which have no advice for how to treat chronic Lyme/Post Lyme disease at all (and lots of verbiage on how NOT to treat it).

But even if this were a treatment trial which both ILADS and members of the IDSA Lyme disease guidelines panel could theoretically agree to, due to the history between members of both and contentious accusations shared in personal communications and in the media between advocacy organizations and anyone from the IDSA Lyme disease panel, this possibility looks slim. There is too much water under the bridge there.

The most recent accusation against members of the IDSA Lyme disease guidelines panel comes from ILADS member Dr. Ken Liegner, one of the most experienced Lyme disease specialists who has been dealing with the controversy pretty much since it began. Dr. Liegner spoke to a crowd of chronic Lyme disease patients at a rally in New York City recently, accusing Dr. Dattwyler of scientific misconduct and withholding scientific information that could prevent chronic disease and save lives:

"In the year 2000, due to fortuitous circumstances, and unbeknownst to Dr. Dattwyler, I gained access to CDC-funded experimental methods in his research laboratory for more than 140 specimens of frozen cerebrospinal fluid on my patients.

Whereas only 2% of specimens tested positive on standard spinal fluid tests, some 62 % of specimens tested positive on one or more of the four experimental assays used.  Ironically, Vicki Logan’s CSF tested more than 7 times higher than the positive cut-off for detection of Outer surface protein C antigen, in the very laboratory of Empire Blue Cross & Blue Shield’s own expert consultant. 

I asked Laboratory Supervisor, Priscilla Munoz, how they knew these methods were valid.  She replied that the three collaborating research laboratories shared aliquots of samples and found excellent reproducibility between the three labs.The results of these CDC-funded studies on direct detection of OspA and OspC antigen and IgG and IgM borrelia-specific immune complexes in spinal fluid have never been published. 

Why not? Did someone at CDC “deep six” the results of this research project?  If so, who made this decision, and why? 

I demand the “raw data” from these CDC-funded research studies, which have never seen the light of day, be made public immediately. 

Thomas Frieden, as Director of CDC can ‘set the tone’ for the agency.  I call on him, to ‘step up to the plate’ and fix the mess created by CDC.  Dr. Frieden can ‘redeem’ the reputation of  CDC, which is composed of fine physicians and scientists.  Dissociate CDC from the disgraced IDSA Lyme disease guidelines.  Otherwise, step down!"

In the Lyme wars, ILADS' critics would say Dr. Liegner is only making up stories in order to smear the reputations of those who challenge his livelihood as a Lyme doctor and stir up patients' ire toward activism.

On the other hand - if he's correct, this is a very serious accusation which cannot go ignored and his anger is understandable. I think even if I were a casual outside observer and not a patient, with an accusation of this nature a full investigation is in order.

Dr. Liegner's accusations are only one of many coming from ILADS and its advocates side towards those involved with the IDSA Lyme disease guidelines panel and the CDC. On both sides of the fence, accusations of conflicts of interest and scientific misconduct fly when it comes to the Lyme wars, with the most recent volley from the IDSA and its colleagues being a highly critical editorial against ILADS and patient advocacy groups which was published in The Lancet.

The Crazy Mixed-Up World Of Persisting Spirochetes

The IDSA Lyme disease guidelines panel and its colleagues at the American Lyme Disease Foundation (ALDF) state that chronic Lyme disease is not caused by persisting spirochetes - but like most patients, we have yet to hear the reason why they think persisting spirochetes are not causing patients' symptoms - at least in some subset of patients who are most likely to respond positively to additional antibiotics.

Dr. Phil Baker (mentioned earlier as the author of the editorial letter to Ms. Pfeiffer of The Poughkeepsie Journal in this post) is executive director of the ALDF, and has strong ties to the IDSA Lyme disease guidelines panel and also to the NIAID since he was a program officer for the Lyme disease research division there in the past.

While he doesn't support additional long-term antibiotic studies for chronic Lyme disease patients, he does support additional research on persister cells related to the research one member of the ALDF's scientific advisory board, Dr. Stephen Barthold, has been conducting. He also promotes similar research to that which was completed by Dr. Bockenstedt, who has stated in her own research published last year that spirochetal antigens may get trapped in patients' joints and that may be what causes their persisting symptoms.

What has Dr. Stephen Barthold said specifically about the nature of these persistent spirochetes in the past?

From an article published at the University of California at Davis in 2008, where Dr. Barthold does his work:

In the case of Lyme disease, the research findings do not suggest that continued use of antibiotics would succeed in getting rid of the lingering bacteria. 

"I suspect that if the initial round of antibiotics hasn't eliminated them, it's not likely that a longer regimen of antibiotics would be any more successful," Barthold said. "It's more likely that a completely different class of antibiotics would be needed to accomplish that. This laboratory mouse model will allow us to address those possibilities."

If Dr. Barthold's suspicion is correct, the reason why clinical trials using long term antibiotics to treat chronic Lyme disease haven't been entirely effective may be because the antibiotics which were used were inappropriate for treating the Borrelia burgdorferi infection patients had in the first place. They may have had some positive effect for some subset of patients - but clearly they did not improve all patients' symptoms.

In other words: Patients with chronic Lyme disease could have chronic infections, but treating them with the kind of antibiotics we have now won't help much. (They might, however, help some patients who have unidentified confections.)

Dr. Barthold has confused many patients with another hypothesis: It isn't infection with the spirochetes which is the primary problem, given their low numbers - rather that it's their ongoing presence which causes patients' persisting symptoms [11:21:11 mark].

Later on, in 2012, in his testimony at a federal House subcommittee hearing, Dr. Barthold stated:

"Because persistence of non-cultivable spirochetes has been shown to occur following treatment with several different classes of antibiotics, the phenomenon is likely explained by antimicrobial tolerance (in contrast to antibiotic resistance or inadequate antibiotic treatment), in which all classes of antibiotics fail to completely eliminate non-dividing or slowly-dividing subpopulations of a broad array of bacteria and fungi [44,45].

A possible explanation for these attenuated antibiotic-tolerant spirochetes may be because of plasmid loss, in which spirochetes have lost critical genetic material that favors robust growth. It has been known for decades that during in vitro passage, B. burgdorferi is highly prone to plasmid loss [46,47,48], and therefore plasmid loss is likely to also occur during the course of infection and increase over time. This may explain why treatment success in humans [3,8] and laboratory mice [2,38] appears to be most effective during early infection.

Treatment success is inversely correlated with spirochete populations, since spirochete burdens in mouse (and human) tissues are highest during early infection [49], when antibiotics work best. The biological (in contrast to medical) significance of attenuated spirochetes is probably insignificant, in that robustly dividing-, genetically-intact spirochetes would be selectively favored upon tick acquisition, transmission, and survival in reservoir hosts. The medical significance of attenuated persisting spirochetes is another matter, and compels further investigation."

For direct reference to the above citations, see full text here:
http://archives.republicans.foreignaffairs.house.gov/112/HHRG-112-FA16-WState-BartholdS-20120717.pdf

(As an aside, it is interesting to note that Dr. Isabel Diterich also published research in 2003 about antibiotic tolerance and immunosuppression involving Borrelia burgdorferi.)

Dr. Bockenstedt doesn't discuss lingering spirochetes in her most recent research which applies here - she discusses lingering antigens which might contribute to patients' persisting symptoms - rather than persister cells.

Dr. Barthold's and Dr. Monica Embers' research involving persistent spirochetes have intrigued the Lyme disease community, and it has called upon a world expert on persister cells, Dr. Kim Lewis, to help.

Dr. Lewis, Distinguished Professor and Director, Antimicrobial Discovery Center, Northeastern University, Boston, Massachusetts. Dr. Lewis, in collaboration with Brian Fallon, MD, MPH, Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University, has recently been awarded a grant from the Lyme Research Alliance to do research which will focus on persisters and introduce a new, rapid method for determining antibiotic sensitivity. A particular variant of persisters will be studied to better understand chronic infection and several experimental compounds will be tested in an effort to eradicate persister populations.

Only further research can determine exactly what is happening with the pathology of chronic Lyme disease, but this research demonstrates that chronic Lyme disease is not easily dismissed with a vague diagnosis of something "a bit like post-traumatic stress disorder".

Something else is going on which is affecting patients and science help can determine what's behind patients' symptoms even if it takes longer to fully understand the process.

I applaud Dr. Barthold, Dr. Embers, Dr. Lewis, and Dr. Bockenstedt for further investigating the cause of chronic Lyme disease even amid dissent and scientific uncertainty. This is the only way to get real answers and stop the decades-long argument about who is right - and who is wrong.

End point?

What is the future of chronic Lyme disease (or post treatment Lyme disease, if that's your preferred term)? I don't know. My current hope is that research which is done with integrity by scientists who have no conflicts of interest and care about patients will be the focus of the next decade and not the kind of petty, low-minded handling my condition has received both in the media and behind the scenes.

If it is confirmed patients have an infection with persister cells, this will spur a whole new generation of treatment development to address persisters. If it is confirmed that retained antigens are a problem, then perhaps a different treatment will be designed for that. But as it stands, no one gets anywhere if we keep fighting. And it seems that patients, their families, and advocates have to hope that Lyme disease advocacy organizations can get together enough of the funding they need to offer grants for research to look into the problem rather than hope and pray that one of a handful of projects patients see as important gets funded by an NIH-NIAID under sequestration.

And people wonder why I want some more scotch...

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[Minor edit August 17, 2013 - Changed "fourteen years" to "twelve years" due to basic miscalculation error.]

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2 2009 Final Report's Proposed Changes to IDSA Lyme Disease Guidelines

I decided to take a break from discussing The Lancet antiscience letter and highlight a few items of note about proposed upcoming changes to the Infectious Disease Society of America's 2006 guidelines for the treatment of Lyme disease.

Below is a list of some Lyme disease guideline items and recommendations for their revision taken from the 2009 Final Report [.pdf] that the Infectious Disease Society of America (IDSA) review panel wrote in response to Senator Blumenthal's antitrust investigation of the IDSA a few years ago.

In this report, an independent review panel came to the conclusion that several changes needed to be made to the 2006 guidelines which would be included in the next version of the guidelines (which has yet to be published).

I have provided a table from the original final report which outlines what the quality of the evidence is which supports each recommendation and the strength of each recommendation, based on the IDSA review panel's judgment.

Following that table, I have provided a more detailed table which takes portions of the original 2006 Lyme disease diagnosis and treatment guidelines (which are more or less identical to the IDSA's 2000 treatment guidelines for Lyme disease with few exceptions) alongside the recommendations of the 2009 panel for the next version of the IDSA guidelines.

I provide this information, along with a few questions for readers:

1. The state of the science in Lyme disease has been moving along at a fair clip, and with more cases, more doctors are also getting a fair amount of clinical experience in treating Lyme disease (as well as other tickborne infections which are on the rise). Why is it that now, in 2013, doctors are referring to guidelines based on data from 2000 and not recommendations made from 2009? Is it the view of most doctors that they won't change their practice concerning Lyme disease until the IDSA's official guidelines are updated to include the changes in this 2009 report? Why wait?
   
   
2. A number of proposed changes which the panel highlighted - such as measuring elevated liver enzymes and looking for signs of disseminated disease - are old news to patients who were treated by LLMDs during the past decade. If LLMDs found these tests and diagnoses of value in helping patients earlier, couldn't their clinical experience have been incorporated into changes to guidelines sooner? Or, is the case that because there are some LLMDs who are viewed with suspicion by mainstream medical professionals that all of their experience is of no value and cannot be validated - therefore their clinical approach would not be considered in new guidelines? Or, is it the case that LLMDs were doing something some infectious disease doctors already had been doing - but none of their clinical ideas were being integrated into new guidelines anyway? What happened?
   
   
3. If one were to write out a table such as the one below with the strength of the recommendation and quality of evidence for each of the ILADS'guidelines, how would they compare to the revised guidelines with the included changes below?
   
   

---

Table 1 - Infectious Diseases Society of America-US Public Health Service Grading System for ranking recommendations in clinical guidelines:

Category, grade
Strength of Recommendation:

A - Strongly in favor
B - Moderately in favor
C - Optional
D - Moderately against
E - Strongly against

Ranking of Quality of the Evidence:

I - Evidence from >1 properly randomized, controlled trial
II - Evidence from >1 well-designed clinical trial, without randomization; from cohort or case-controlled analytic studies (preferably from >1 center); from multiple time series studies; or from dramatic results from uncontrolled experiments
III - Evidence from opinions of respected authorities, based on clinical experience, descriptive studies, or reports of expert committees

Please take note of the category AND quality of the evidence ranking for each item below. In particular, note items marked with a Level III evidence ranking, and those of Level I ranking which were considered by panel members to be too high.

Table 2 - Old 2006 Guidelines Versus Recommended Changes For New Guidelines:

Item - Tick Bite Prophylaxis Judgment	Recommendation
(p. 6) A single dose of doxycycline may be offered to adult patients (200 mg dose) and to children >8 years of age (4 mg/kg up to a maximum dose of 200 mg) (B-I) when all of the following circumstances exist: (a) the attached tick can be reliably identified as an adult or nymphal I. scapularis tick that is estimated to have been attached for >36 h on the basis of the degree of engorgement of the tick with blood or of certainty about the time of exposure to the tick; (b) prophylaxis can be started within 72 h of the time that the tick was removed; (c) ecologic information indicates that the local rate of infection of these ticks with B. burgdorferi is >20%; and (d) doxycycline treatment is not contraindicated. The time limit of 72 h is suggested because of the absence of data on the efficacy of chemoprophylaxis for tick bites following tick removal after longer time intervals. Infection of  >20% of ticks with B. burgdorferi generally occurs in parts of New England, in parts of the mid-Atlantic States, and in parts of Minnesota and Wisconsin, but not in most other locations in the United States. Whether use of antibiotic prophylaxis after a tick bite will reduce the incidence of HGA or babesiosis is unknown.	When the 2006 Lyme Guidelines are next updated, the Review Panel recommends the careful consideration of the grading for quality of evidence. One panel member thought the quality of evidence assigned to the recommendation (I) might be too high.
Item - Doxycycline Use, Pregnant Women and Young Children	Recommendation
(p. 7) Doxycycline is relatively contraindicated in pregnant women and children less than 8 years old. The panel does not believe that amoxicillin should be substituted for doxycycline in persons for whom doxycycline prophylaxis is contraindicated because of the absence of data on an effective short-course regimen for prophylaxis, the likely need for a multiday regimen (and its associated adverse effects), the excellent efficacy of antibiotic treatment of Lyme disease if infection were to develop, and the extremely low risk that a person with a recognized bite will develop a serious complication of Lyme disease (D-III).	When the 2006 Lyme Guidelines are next updated, the Review Panel recommends removal of the modifiers “relatively” contraindicated and “excellent” efficacy.
Item - Need For Doctors To Identify Tick & Engorgement Degree	Recommendation
(p. 7) To prescribe antibiotic prophylaxis selectively to prevent Lyme disease, health care practitioners in areas of endemicity should learn to identify I. scapularis ticks, including its stages (figure 1), and to differentiate ticks that are at least partially engorged with blood (figure 2A and 2B) (A-III).	When the 2006 Lyme Guidelines are next updated, the Review Panel recommends the careful consideration of the strength of recommendation. Although a subjective measure, two Review Panel members thought that the strength assigned to this recommendation (A) might be too high.
Item - Specifics On Monitoring Tickborne Coinfections & Disseminated Lyme Disease	Recommendation
(p. 8) Health care practitioners, particularly those in areas of endemicity, should become familiar with the clinical manifestations and recommended practices for diagnosing and treating Lyme disease, HGA, and babesiosis (A-III). Persons who have removed attached ticks from themselves (including those who have received antibiotic prophylaxis) should be monitored closely for signs and symptoms of tickborne diseases for up to 30 days; in particular, they should be monitored for the development of an expanding skin lesion at the site of the tick bite (erythema migrans) that may suggest Lyme disease. Persons who develop a skin lesion or viral infection–like illness within 1 month after removing an attached tick should promptly seek medical attention to assess the possibility of having acquired a tickborne infection.	The Review Panel determined that this recommendation is medically/scientifically justified in light of all of the evidence and information provided (8-0). When the 2006 Lyme Guidelines are next updated, the Review Panel recommends that consideration be given to specifying what constitutes “monitoring” and to providing anticipatory guidance for patients about possible manifestations of disseminated Lyme disease (e.g., arthritis, meningitis).
Item - Treatment of Early Lyme Disease	Recommendation
(p. 9) Doxycycline (100 mg twice per day), amoxicillin (500 mg 3 times per day), or cefuroxime axetil (500 mg twice per day) for 14 days (range, 10–21 days for doxycycline and 14–21 days for amoxicillin or cefuroxime axetil) is recommended for the treatment of adult patients with early localized or early disseminated Lyme disease associated with erythema migrans, in the absence of specific neurologic manifestations (see Lyme meningitis, below) or advanced atrioventricular heart block (A-I). Ten days of therapy is sufficient if doxycycline is used; however, given the much shorter half-life of ß-lactam drugs, such as amoxicillin or cefuroxime axetil, it is unclear whether a 10-day course of these drugs would be as effective. Therefore, for uniformity, a 14-day course of therapy is recommended for all of the first-line oral agents. Each of these antimicrobial agents has been shown to be highly effective for the treatment of erythema migrans and associated symptoms in prospective studies. Doxycycline has the advantage of being effective for treatment of HGA (but not for babesiosis), which may occur simultaneously with early Lyme disease. Doxycycline is relatively contraindicated during pregnancy or lactation and in children less than 8 years of age.	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests removal of the modifiers “highly” and “relatively.”
Item - Choice of Treatment Modality	Recommendation
(p. 10) Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim- sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed- dosing (i.e., dosing on some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see table 4) (E-III).	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that “lack of biological plausibility, lack of efficacy” be replaced with “lack of demonstrated efficacy in controlled studies.” There are data demonstrating that the following are ineffective in the treatment of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G and combinations of antimicrobials. There are also data demonstrating that the following are potentially harmful: combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others), and long-term antibiotic therapy (e.g., more than 4 weeks). There is a paucity of data regarding the safety and effectiveness of the use of the following in the treatments for Lyme disease: hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, and specific nutritional supplements, but some of these are likely to be harmful to the patient. Many of these examples, such as fever therapy and hydrogen peroxide, carry considerable risk of harm to the patient.
Item - Diagnosing Tickborne Coinfections	Recommendation
Coinfection with B. microti or A. phagocytophilum or both may occur in patients with early Lyme disease (usually in patients with erythema migrans) in geographic areas where these pathogens are endemic. Coinfection should be considered in patients who present with more- severe initial symptoms than are commonly observed with Lyme disease alone, especially in those who have high-grade fever for >48 h, despite receiving antibiotic therapy appropriate for Lyme disease, or who have unexplained leukopenia, thrombocytopenia, or anemia (A-III).	When the 2006 Lyme Guidelines are next updated, the Review Panel recommends that abnormal hepatic transaminases (AST and ALT), lactate dehydrogenase, or bilirubin should also prompt evaluation for coinfection with B. microti or A. phagocytophilum.
(p. 11) Coinfection might also be considered in the situation in which there has been resolution of the erythema migrans skin lesion, but either no improvement or worsening of viral infection like symptoms (B-III).	When the 2006 Lyme Guidelines are next updated, the Review Panel recommends that consideration be given to changing “might” to “should.”
Item - Early Acute Neuroborreliosis Treatment	Recommendation
For adult patients with early Lyme disease and the acute neurologic manifestations of meningitis or radiculopathy, the use of ceftriaxone (2 g once per day intravenously for 14 days; range, 10–28 days) in early Lyme disease is recommended for adult patients with acute neurologic disease manifested by meningitis or radiculopathy (B-I).	When the 2006 Lyme Guidelines are next updated, the Review Panel recommends that consideration be given to the emerging data supporting the use of oral doxycyline as first line therapy in selected patients with neurologic manifestations of Lyme disease, such as those with hypersensitivity to beta lactam antibiotics.
Item - Lyme Arthritis Without Neurological Disease	Recommendation
(p. 14) Lyme arthritis can usually be treated successfully with antimicrobial agents administered orally. Doxycycline (100 mg twice per day) (B-I), amoxicillin (500 mg 3 times per day) (B-I), or cefuroxime axetil (500 mg twice per day) (B-III) for 28 days is recommended for adult patients without clinical evidence of neurologic disease.	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that careful consideration be given to the current quality of evidence for amoxicillin. Two Review Panel members thought that the quality of evidence assigned to doxycycline in this recommendation (I) might be too high based on the available evidence.
Item - Lyme Arthritis in Children	Recommendation
For children amoxicillin (50 mg/kg per day in 3 divided doses [maximum of 500 mg per dose]) (B-I), cefuroxime axetil (30 mg/kg per day in 2 divided doses [maximum of 500 mg per dose]) (B-III), or, if the patient is >8 years of age, doxycycline (4 mg/kg per day in 2 divided doses [maximum of 100 mg per dose]) (B-I) is recommended. Oral antibiotics are easier to administer than intravenous antibiotics, are associated with fewer serious complications, and are considerably less expensive. However, it is important to recognize that a small number of patients treated with oral agents have subsequently manifested overt neuroborreliosis, which may require intravenous therapy with a ß-lactam antibiotic for successful resolution. Further controlled trials are needed to compare the safety and efficacy of oral versus intravenous therapy for Lyme arthritis.	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that careful consideration be given to the current quality of evidence for amoxicillin. Two Review Panel members thought that the quality of evidence assigned to this recommendation (I) might be too high based on the available evidence.
Item - Diagnosis and Treatment of Neurological Disease	Recommendation
Neurologic evaluation that may include lumbar puncture should be performed for patients in whom there is a clinical suspicion of neurologic involvement. Adult patients with arthritis and objective evidence of neurologic disease should receive: parenteral therapy with ceftriaxone (A-II) for 2-4 weeks. Cefotaxime or penicillin G administered parenterally is an acceptable alternative (B-II).	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests consideration of specifying neurological issues that should be included/excluded. In addition, the Review Panel suggests that “evidence of neurologic disease” be defined and that the adjective “objective” be deleted. Clarifying the language to indicate that penicillin is inferior to cefotaxime in this clinical setting should also be considered when the guideline is next updated.
For children intravenous ceftriaxone or intravenous cefotaxime is recommended (B-III); penicillin G administered intravenously is an alternative (B-III).	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that consideration be given to clarifying the language to indicate that penicillin is inferior to cefotaxime.
Adult patients with late neurologic disease affecting the central or peripheral nervous system should be treated with intravenous ceftriaxone for 2 to 4 weeks (B-II). Cefotaxime or penicillin G administered intravenously is an alternative (B-II). Response to treatment is usually slow and may be incomplete. Re-treatment is not recommended unless relapse is shown by reliable objective measures.	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that consideration be given to adding a rating for strength of recommendation and level of evidence to the last part of this recommendation. Consideration should also be given to providing examples of reliable “objective measures.”
Item - Post (-Treatment) Lyme Disease Syndrome	Recommendation
There is no well-accepted definition of post–Lyme disease syndrome. This has contributed to confusion and controversy and to a lack of firm data on its incidence, prevalence, and pathogenesis. In an attempt to provide a framework for future research on this subject and to reduce diagnostic ambiguity in study populations, a definition for post–Lyme disease syndrome is proposed in these guidelines. Whatever definition is eventually adopted, having once had objective evidence of B. burgdorferi infection must be a condition sine qua non. Furthermore, when laboratory testing is done to support the original diagnosis of Lyme disease, it is essential that it be performed by well-qualified and reputable laboratories that use recommended and appropriately validated testing methods and interpretive criteria. Unvalidated test methods (such as urine antigen tests or blood microscopy for Borrelia species) should not be used.	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that the sentence that begins with “Whatever definition” be modified as follows: “Whatever definition is eventually adopted, having once had objective clinical or laboratory evidence of B. burgdorferi infection must be a condition sine qua non until a syndrome is formally defined.”
To date, there is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease.	When the 2006 Lyme Guidelines are next updated, the Review Panel suggests that consideration be given to changing the phrase “no convincing biologic evidence” to something more specific, such as “Reports purporting to show the persistence of viable B. burgdorferi organisms after treatment with recommended regimens for Lyme disease have not been conclusive or corroborated by controlled studies.” It has been proposed by some that there are hardy, drug-tolerant reservoirs of B. burgdorferi, including intracellular cystic forms. To date, this has not been shown to correlate with symptom persistence, nor has eradication of these forms been shown to correlate with symptom improvement.
Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (>6 months) subjective symptoms after recommended treatment regimens for Lyme disease (E-I).	Panel determination summary: [...] in the case of Lyme disease, there has yet to be a single high quality clinical study that demonstrates comparable benefit to prolonging antibiotic therapy beyond one month. Therefore, the Review Panel concluded that in the case of Lyme disease inherent risks of long-term antibiotic therapy were not justified by clinical benefit. [...] This conclusion was reached despite the large volume of case reports, case series, anecdotes, and patient testimonials reviewed that attested to perceived clinical improvement during antibiotic therapy. In the end, such sources of evidence were felt to be fertile material for hypothesis- generation, but intrinsically incapable of hypothesis-testing. By contrast, the prospective, randomized, controlled trials were formal hypothesis tests with strict recruitment criteria, prospectively defined outcome measures, and independent oversight. The Panel’s conclusions, which are consistent with those reached by guidelines panels from the IDSA as well as other societies, represent the state of medical science at the time of writing. Only high-quality, prospective, controlled clinical trial data demonstrating both benefit and safety will be sufficient to change the current recommendations.

These proposed changes to some of the guidelines look like a case of updating them to reflect a reality those of us who have been ill already knew years ago based on testing and experience. In particular:

• It appears antibiotics used to treat Lyme disease in its early acute stage are not as effective as they were originally thought to be. 
• It appears that objective evidence of neurological involvement isn't the only reason to consider more intense antibiotic treatment - subjective neurological symptoms may be considered, too - provided they are well-characterized and defined.
• Abnormal liver panels can be used to indicate the presence of coinfections.
• Coinfections should always be considered when symptoms are severe and/or persist after initial antibiotic treatment for Lyme disease.
• A single 200 mg dose of doxycycline as prophylaxis may not have the originally stated quality of evidence to back its use. 

The IDSA has stated repeatedly that its current 2006 guidelines are evidence-based and are the best science has to offer. But it seems that the current guidelines are already outdated and have been, and do not reflect the state of the science nor clinical experience. They need to be updated, even within the most conservative perspective of how Lyme disease should be viewed and treated.

It should be noted that in a number of cases, items with Level I evidence ratings were considered to be rated too high according to some members of the review panel.

One thing I question is what the state of the science is and level of transparency on any recommendation which is labeled with an evidence level of "III". Those who wrote the guidelines used their expertise and unpublished information to determine that recommendation, with no external validation as to which data they relied upon and how they drew their conclusions about that recommendation based on that data. Level III recommendations are about opinion - not double blind, random controlled trials or observational studies on patients, which are a higher level of evidence.

If anyone is an investigative reporter or researcher on Lyme disease - let alone a patient suffering from it - wouldn't you like to know more about how the experts came to their conclusions about such recommendations in the first place?

While the debate rages on about chronic Lyme disease or Post-treatment Lyme Disease Syndrome, and the reviewers of these guidelines stated that there isn't evidence to support the use of long term antibiotics for patients with persisting symptoms - the reviewers do not offer any alternative treatment methods or recommendations, either. This is a long outstanding issue which strongly needs to be addressed.

Either doctors who are using long term treatments and having success with their patients will be asked to produce evidence of that success outside of testimonials and case studies - or longer clinical trials using antibiotic regimens other than those already used in double blind clinical trials will need to be conducted.

But even before one gets there, one has to ask this question: How adequately have early stage Lyme disease cases been treated based on some of the above proposed changes to the guidelines? 

And whether patients agree or not with the proposed changes to guideline recommendations, why is anyone still waiting for these proposed changes to be included and published 3 YEARS after the 2009 report?

Has any research been completed in the past 3 years which challenges the content in these guidelines?

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4 Lyme disease pseudoscience and science: The antiscience letter

When I first read this Personal View paper, "Antiscience and ethical concerns associated with advocacy of Lyme disease",  a truncated version was making the rounds between patient mailing lists and online groups. I didn't yet know what the full version contained, and given that the truncated version was high on accusation and negative characterization of Lyme disease advocates and low on science and attribution, I could do nothing but rant at it.

The full text was (and continues to be) officially behind a paywall, so most patients have not seen the full version unless they sought out alternative links, such as this site's copy (pdf) posted by Dr. Susan O'Connell, who was a co-author of the letter.

One of my ongoing complaints about paywalls is that disabled and often financially challenged patients cannot afford to pay for 24 hours access to a paper about an issue which concerns them or is about their medical condition. Another issue is some patients have cognitive issues including short term memory problems, so even if they have the money, they need more than 24 hours access to a paper. But when it comes to this particular paper, I think most Lyme disease patients would give it a pass when they read it and realize that the authors' focus is on criticizing the organizations which have served and represented them for years.

But I digress… Now that I've read the full text more than once, I'm left in a difficult position in how to respond to this paper as a patient who has persisting symptoms related to Lyme disease and is also skeptical.

First of all, when you read the first paragraph and find that advocates and activists around your disease are being equated with AIDS denialists and antivaccine campaigners, you know you're off to a bad start. It angers me, because making such comparisons has a tendency to stereotype and label all Lyme disease advocates and activists as being analogous to these groups.

Reading this made me feel defensive because I'm not an AIDS denialist and I support vaccine development - but I have ground to cover, and I am going to work on addressing the core content of this letter over a series of entries in the weeks future entries to come. I don't want to get too caught up in how certain comparisons or portrayals by the authors inflame me for now - I want to focus more on the substance.

Many of the authors' criticisms and concerns were ones I was familiar with before - I just had never seen them concentrated all in one place until now, serving as a sort of beacon which informs the readers of The Lancet just how dreadful they think Lyme disease advocates and activists are. And a lot of the criticisms are not even about advocates and activists themselves.

I'm not naive - a number of these issues are ones of which I as a patient am also critical. Bad things have happened in regards to how some medical professionals have treated Lyme disease patients. There are charlatans out there without medical degrees who have taken advantage of patients who are sick and vulnerable. There was a self-defined Lyme disease expert who killed a patient with an injection of bismuth. There was some man who pretended to be a doctor in California who told a woman to sit in a hot tub with a watermelon to help her kidneys and misdiagnosed her mother with Lyme disease when she had MS. There are some doctors and laboratories who may have conflicts of interest, and that's something which would require a full investigation if it is going on. I also know that some advocates and activists hold unsubstantiated beliefs about Lyme disease, too - and hope that by having this blog and referring to scientific source material that they will leave here more informed.

So I'm not ignorant of the statements and criticisms the authors are emphasizing in their letter to The Lancet. Not at all. Some of the accusations and concerns voiced are based on situations which happened over twenty years ago, and notably, some of them deserve more than the quick soundbite the authors devoted to them because of the complex issues surrounding them.

Soundbite is what we get, though, and the letter's intent isn't to persuade anyone things are going well. It is a charge against all the authors see as erroneous, flawed, and egregious, without subtleties; without digging deeper or giving readers a wide angle view.

Reading this paper was difficult for me because it's a tired trope that's been pulled out before, again and again, in similar editorials and letters about chronic Lyme disease - in some cases from some of the same authors who wrote this one. I begin to think, "Don't you guys have anything new to say?"

And I'm not saying that to be dismissive of everything they wrote. It's just that it's no surprise when I've seen it before.

I want to start with focusing on one aspect of the letter which criticized Lyme disease patient advocacy groups and activists for supporting pseudoscience and funding Lyme disease research and publications which fall into a parallel universe.

The authors state on page one:

"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."

They also later state:

"Activists have organised their own scientific meetings, published their own journal, and funded research by LLMDs 58,59 All this activity has led to the creation of a cadre of doctors and activists with their own institutions, research, and conferences, a dedicated pool of patients, and unorthodox, alternative views of microbiology, immunology, and pharmacology."

(That's a pretty heavy indictment of these activists in the paragraph above - of which I'm certain only a very few engage in harassment or make threats. I don't endorse such behavior, and unfortunately in any group where there are empassioned activists, a few might step over the line that most of us won't.)

Anyway, when you examine citations #58 and #59, the institutions and research grants the authors are mentioning are none other than Columbia University's Lyme and Tickborne Diseases Research Center and many grants which the Lyme Disease Association have given toward research.

So it would seem that the authors think that Columbia University and the many researchers who were awarded grant money by the LDA are engaged in a parallel universe of pseudoscientific research, publications, and meetings?

If so, where are these pseudoscience-laiden research projects and publications?

• The Lyme Disease Association awarded 94 research grants to researchers in 14 states between 1992 and 2012. A list of the grants can be found at the preceding link.
  
  
• The above research led to the publication of 28 peer-reviewed papers in such journals as PLoSONE, Journal of Bacteriology, Genetics, Journal of Medical Entomology, Neurobiology of Disease, Gene, Emerging Infectious Diseases, Neurology, Infection and Immunity, JAMA, and others.
  
  
• Research covers a wide range of Lyme disease related topics such as surveys of tick populations, comparative genomics of Borrelia burgdorferi plasmids, proteomic studies of cerebral spinal fluid of patients, investigation into Lyme disease and other tickborne diseases in the southern US, examination of the humoral response to Borrelia burgdorferi, and many other topics.
  
  
• One project resulted in data used to apply for/receive $4.7 million NIH grant. Significant genome mapping initially funded by the LDA has shown that different strains of Borrelia have the ability to exchange genetic material among themselves.
  
  
• The Lyme Disease Association's 2013 Conference in June will have a wide range of scientific researchers and a few doctors who have experience treating Lyme disease giving presentations.
  
  
• The biographies of those researchers and doctors who attended the Lyme Disease Association's 2012 Conference cover a wide range of tickborne disease related specialists, none of whom seemed to support pseudoscience.
  
  
• The Lyme Disease Assocation and Lyme Research Alliance, in collaboration with the trustees of Columbia University helped established the Lyme and Tickborne Diseases Research Center at the university. Here's an overview from the LRA of what the Center does: Columbia Lyme disease research summary.
  
  
• The Lyme Research Alliance has a list of currently active projects: research on vertebrate reservoirs for tick-borne diseases in central US, identification of better diagnostic tests and better treatments for people with chronic persistent symptoms, strain virulence characterization from EM rashes, research on antineuronal antibodies in patients with persistent symptoms, exploration of potential biomarkers for persisting brain and nervous system symptoms, and investigation into autoimmunity treatment for chronic Lyme disease.
  
  
• The Tickborne Disease Alliance and X Prize Foundation created a diagnostic X Prize global competition to develop a fail-safe diagnostic tool for Lyme and tick-borne diseases.
  
  
• Although there is no detailed list of projects provided, Lymedisease.org (formerly CALDA) states on its website that it "funds research projects at Stony Brook University (NY), the University of California at Davis, Stanford University, Johns Hopkins University, and the University of New Haven (CT)" and awards grants which "average between $15,000 and up to $50,000 for research projects up to 2 years."
  
  
• Of historical significance, it's important to remember that the Lyme Disease Foundation (which is retired) originally supported development of an effective vaccine to prevent Lyme disease. It also supported a number of scientific conferences and projects, and partnered with the NIH's Rocky Mountain Labs, Tulane University, Texas A & M, Connecticut Agricultural Experiment Station, and many others.

I think that many patients, researchers, and members of the public will look at the above list and wonder just which of these researchers, organizations, and universities are supporting pseudoscience. The authors of The Lancet letter never spell out the particulars of what research has been done which comes from a parallel universe or which publications they consider to be pseudoscience.

To add to the confusion I have about The Lancet antiscience letter, it also seems as if leaves open the potential for the authors' statements to shoot themselves in the foot. One of the researchers who is part of the IDSA and CDC-endorsed American Lyme Disease Foundation's (ALDF) science advisory board is also a member of a Lyme disease patient advocacy science advisory board. Dr. Robert S. Lane is a science advisor to both Lymedisease.org/CALDA's science advisory board and the ALDF's science advisory board. Dr. Stephen Barthold, who is often called upon by Lyme disease advocacy groups to discuss his research at conferences and in interviews and was a recipient of an LDA grant - is also a member of the ALDF's science advisory board and has served on ad hoc committees for the National Research Fund for Tick-Borne Diseases, Inc.

Any of a number of the researchers who have attended and given presentations at major Lyme disease advocacy organization conferences and events and were awarded grant money by Lyme disease advocacy organizations were at times affiliated with (either directly or indirectly) the authors of the antiscience letter in The Lancet. It would be strange if they found their research to come from a parallel universe - but if it did, at least part of it would be coming from their own.

Next installment on Lyme disease pseudoscience and science: Discussing what constitutes the facts about Lyme disease in relation to the antiscience paper. Stay tuned...

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2 Introduction: Lyme Disease Science And Pseudoscience

When I began this blog, part of it was in response to The Chicago Tribune's article, "Chronic Lyme: A dubious diagnosis". And while I did a fair deconstruction of it of my own, I think Paul Raeburn's original comment on the piece pretty much captured my opinion, too:

"Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates.

The reporters go on and on impuguning patients and advocates without ever telling us whether there is a debate among legitimate experts about whether Lyme disease might assume a chronic form."

Raeburn's remarks did not go without criticism from others. Orac, of Respectful Insolence blog, pointed out that Raeburn was demonstrating that he supported false balance in reporting - that as long as the evidence against chronic Lyme disease outweighed the evidence in favor of it, there was no way to give it equal time. (More on this in a later post.)

Since reading the Tribune article, I've read a number of articles, blogs, and editorials which questioned if not denied the existence of chronic Lyme disease, such as Hoofnagle's Denialism blog entry on chronic Lyme being a fake disease; White Coat Underground's "Lyin about Lyme" entry; The Lippard Blog's "Science-based Medicine Conference, part 5: Chronic Lyme"; "A Critical Appraisal of Chronic Lyme Disease"(NEJM); "Chronic Lyme disease: In defense of the scientific enterprise"(FASEBJ); "Antiscience and ethical concerns associated with advocacy of Lyme disease"- and more.

I read them because wanted to find out why people had doubts about chronic Lyme disease - and what, if anything, they would say about an alternative hypothesis for patients with persisting symptoms - namely post-Lyme disease syndrome, an autoimmune-like disorder triggered by Lyme disease.

Far as I could see, most blog posters and many of their commenters made no mention of the scientific evidence that some patients who contract Lyme disease do in fact go on to experience persisting symptoms - while many editorials and journal publications at least acknowledged this fact.

To quote Dr. Paul Lantos of Duke University, who wrote about chronic Lyme in "Chronic Lyme disease: The controversies and the science"(full text here):

"It is well-established that some patients experience prolonged somatic or neurocognitive symptoms during convalescence from Lyme disease, and a subset suffer significant functional impairment. Whether this phenomenon occurs frequently or rarely, and whether it is caused by persistent infection with B. burgdorferi, lie at the heart of the often acrimonious controversy over what has been termed ‘chronic Lyme disease’."

This is me. I am part of "some patients". I had a tick bite, developed an erythema migrans or bull's eye rash, and a positive blood test for Lyme disease. I have a history of being significantly functionally impaired. I have taken antibiotics - and even took more than was advised under the IDSA's treatment guidelines. I have tried prescription pain medicine and other treatments for my symptoms.

Yet I still suffer, and as a patient one of the problems I face is that a lot of negative media press, blogs, and articles not only deny chronic Lyme disease's existence but also neglect to mention that there is scientific evidence that some patients who contract Lyme disease develop prolonged symptoms after initial treatment.

To give Orac on his Respectful Insolence post some credit, when he wrote about the dubious diagnosis article in The Chicago Tribune he did say:

"Don’t get me wrong. Lyme disease is real. There does even appear to be a post-Lyme disease syndrome, which is seen in patients who had Lyme disease and now have chronic symptoms (such as fatigue, various pains, and difficulty concentrating) after having been treated. Indeed, this is even referred to as category 4 Lyme disease. What causes this syndrome is a mystery, and there is no doubt that there are patients out there with debilitating symptoms after being treated for Lyme disease, but current scientific and clinical evidence does not support the idea that these symptoms are due to a chronic ongoing infection or that prolonged courses of antibiotics do any good."

And a commenter on that post, Kyle, also said something which hit home for me:

"When it comes to the advocacy surrounding the disease, it can be difficult to separate those that are truly sick with tick-borne disease, and those that seek the diagnosis of Lyme disease to explain their symptoms. Unfortunately, for this reason, I believe the truly ill may be simply ignored.

We also have to take in account that there are many other pathogens that can be transmitted from a tick that have symptoms that resemble that of Lyme disease, and it’s not uncommon for an infected individual to receive multiple infections at the same time."

These two at least acknowledge that yes, there are patients with tickborne diseases who suffer from them and also those who suffer with persisting symptoms after initial treatment - though unlike most patients and their advocates, they disagree that symptoms can arise from a chronic infection.

But getting back to it: Let's say for the sake of argument here it's firmly established I'm an individual who became truly sick with a tickborne disease, took antibiotics, and continue to have symptoms since the fateful day I was bitten.

What now?

The person in my situation is faced with a dilemma, when it comes to knowing what to do once the symptoms acquired during infection do not go away - especially after treatment. Not after a week. Not after a few months. And not after years.

Given my history of being a skeptic, I initially hoped that reading what other skeptics had written would be useful. I thought it would challenge me to think and inform me with facts about Lyme disease and other tickborne diseases I hadn't known before.

Surely, I thought, they would have gotten deep into an explanation of Lyme disease's pathogenesis and explained the mechanisms behind my condition and provided evidence as to why chronic infection wasn't a viable cause for my symptoms. And I thought they would have educated me and others on not only Lyme disease and chronic Lyme disease - but on Post Lyme Disease Syndrome and how it occurs.

This is not how things turned out, though. I've read pretty much all the skeptics' blog posts and critical editorials on chronic Lyme disease that I can get my hands on, thinking I could learn something from them - only to realize three things about them:

1. They don't typically offer enough detailed weighing of the data to show how those who do not support the existence of chronic Lyme disease came to their conclusion.
2. Most do not even mention the concept of post-treatment or post Lyme disease syndrome; those that do, do so briefly and offer no advice on how to handle it.
3. They don't help patients in my situation with ideas on how to get better.

When it gets down to it,  the main reason these skeptical venues lacked value for me was that they contain no useful, actionable information for me as a patient. There is no helpful advice given. There is sometimes a verbal note of sympathy (see above) but that's as far as it goes.

And from a scientific perspective, there has been little actual discussion from skeptics about which lines of research could be pursued next which could help someone in my shoes. There is little detailed discussion of the specifics of why precisely it is that the authors and commenters reject the idea that Borrelia burgdorferi - as well as any other Borrelia or tickborne pathogen - might persist in its host.

The conversation never gets that far. I was hoping it would. But mostly, skeptical people have chosen not to engage me on this topic even though I myself have been a skeptic and question many things.

There has been nothing to learn there, so I began my own line of inquiry and began doing my own research on my condition once my brain began working well enough to read again. And instead of skeptics, I have turned to other patients for support during my illness who commiserate with what I'm going through - patients who mostly support a model of chronic and persisting infection of Lyme disease - though a few also wonder if something immune-related or autoimmune might be contributing to their symptoms as well.

I know when I talk to another patient that I will have someone in my corner who understands what I'm going through; it's one small consolation for dealing with a difficult condition. We can share ideas with each other about what kinds of treatment we've experienced and our outcomes, and sometimes there is a useful gem to be found there which when acted on will make our lives better.

For those who are skeptical about having a chronic infection and/or truly think their situation is post-infectious, it should be noted that there are no "post Lyme disease syndrome" support groups. Googling "post Lyme disease support" will redirect you to any of a number of friendly and welcoming sites informing you about chronic Lyme disease. (To the skeptical, go ahead and open a new browser window and try it. I'll be waiting for you right here until you get back.)

Given this, if you think dealing with chronic Lyme disease on its own is hard enough, when you think you have a newly acquired autoimmune condition that was triggered by Lyme disease it becomes even more challenging to find information and support. You might find your answers in a few isolated forum posts where patients bring up the issue of developing hypothyroidism or a case of antiphospholipid syndrome after contracting Lyme disease.

This situation is slowly changing, though, as more patients acknowledge that alongside infection, immune factors in general can play a role in their condition, and advocacy groups fund research on novel treatments for chronic Lyme disease such as VG LifeSciences VGV-L.

It seems to me that most patients give up on interacting with those who are skeptics of chronic Lyme disease and stick to mingling with those who do not question their condition in any way. It's understandable to withdraw and be self-protective when there is so much suffering - especially since all some skeptics seem to want to do is tell patients our symptoms are "all in our heads" without really knowing a damn thing about us. Since this is not the sort of feedback anyone needs when we are genuinely struggling with a chronic illness, those who deny the reality of our condition are usually avoided.

However, I'm not fully avoidant. I'm more confrontational, and I've never been "most patients" because I've had one foot in the world of the skeptic and have continued to question the nature of my own condition. Could what I have really be a chronic infection? Is it something else? Or is it a combination of things from which I suffer? I periodically visit and revisit the writings of those who are skeptical of either the existence of chronic Lyme disease or its hypothetical cause to see if there is anything new to learn... Something. Anything.

In the end, I'm not always sure where to turn when coming from this space. I ask the questions many patients ask, such as, "What is the truth about Lyme disease?", "What exactly is the best thing for me to do as an individual, based on my condition?", and "Is there any external auditor who can look at all the information about Lyme disease that is out there and give me a straight answer about it?"

In the end, are there any clear answers?

I offer all of the above as an introduction for what I plan to discuss in the coming days and weeks on this blog: The issue of skepticism around chronic Lyme disease, how the science and pseudoscience of Lyme disease has been discussed online and in journals, and a meta-discussion of how a patient approaches these discussions with the kinds of questions a patient like myself might be inclined to ask.

This is no minor undertaking. As a patient, I am always drowning in information about tickborne diseases and trying to make sense of it while simultaneously having to understand and fend off criticism from individuals who and organizations which don't even know me and don't understand my condition. They treat me as some vague data point or offer up a two-dimensional stereotypical patient when I'm a real human being living a three-dimensional life full of daily struggles.

Somehow, there has to be a way to address being in the situation in which I find myself. Somehow there has to be a way to break out of this box which has been imposed on me and add another dimension.

During my exploration of these issues, it's important to question and respond to the statements which are offered in editorial pieces such as "Antiscience and ethical concerns associated with advocacy of Lyme disease" (full text here) because in a very real way, the statements within affect the way society not only looks at a condition such as chronic Lyme disease but also how it looks at and characterizes the patient population which is suffering from the condition.

As a patient, I'd like to give a face to and a voice to a condition which - while hotly contested in terms of cause - is definitely real to me. And I intend to question and discuss the criticisms and skepticism offered in a logical and methodical way. Stay tuned to take that journey with me.

Photo credit: Tim Houlihan

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