6 Health Matters Magazine And Lancet Anti-Science Lyme Disease Rebuttals

I wanted to point out two noteworthy online venues which are discussing Lyme disease as well as chronic Lyme disease - one article and a series of rebuttal letters which have been circulating around the Lyme disease patient community recently.

The first venue is Health Matters, an online magazine in the UK which is edited by Steve Iliffe, a professor at the University College of London, and Paul Walker,  an independent health consultant who worked for the NHS for many years.

This month, Health Matters published part one of an article by Kate Bloor on Lyme disease, "Falling Through The Gap?: Part One: Lyme Disease Prevention In The UK."

The article does not focus on the controversy around chronic Lyme disease but instead goes straight to the roots of Lyme disease by asking about which agencies and institutions in the UK are responsible for educating the public on prevention of tickborne illnesses and how well this job has been done to date.

Quoting Kate:

"Approaches that only target those in traditional high risk groups, may not reach far enough. New research shows that one in five people diagnosed with Lyme became infected either in an allotment, park or garden and one in five patients was infected abroad. These are not normally considered high risk areas or high risk activities."

Any program for prevention should be designed to reach all those groups who are found to be at risk and not some fraction of them, and should include prevention where substantial minority groups are at risk.

Kate also included this useful bit of statistical information:

"A survey of GP’s showed that 72% reported using the wrong method of tick removal, of the surveyed councils, only 7% provided information to staff, and only 7% claimed to have information for the public on their website."

From the research I've read from Russia, one of the major causes of infection from tick bites stems from improper removal of the tick. Every effort should be made to carefully remove the entire tick including the head and mandibles, without placing pressure on the tick's abdomen/gut. This will lessen the odds of contracting an infection greatly. Here, citing that 72% of doctors removed ticks incorrectly is very concerning; doctors are the front line for treatment and should be removing ticks properly nearly 100% of the time.

That regional councils would not have their own staff education and education for the public in place is also important to note, and I have to wonder how much those who have been bitten by ticks in these areas have informed the councils on their experience and requested more warnings to the public on tickborne illnesses. To me, it seems like it would require a small amount of effort and money invested in education to help prevent more people from being bitten.

The rest of the article outlines how prevention is being managed (or not) by various organizations, the educational strides being made by patient advocacy organizations such as Borreliosis and Associated Diseases Awareness UK (BADA-UK), and the need for national and local government health agencies to make tickborne illness a priority.

More here, at the link: http://www.healthmatters.org.uk/?p=1203

The second venue I want to mention is The Lancet, which has recently published a series of rebuttal letters in response to an opinion piece posted last year, "Antiscience and ethical concerns associated with advocacy of Lyme disease" (abstract only).

• Stella Huyshe-Shires, chairperson of Lyme Disease Action, writes about how the situation Auwaerter and his coauthors outline in the US is different from that which is experienced in the UK in regards to Lyme disease prevention, education, and treatment. She focuses on patient advocacy group's drive for awareness and evidence-based medicine to treat patients, and she mentions that the British Infection Association is now collaborating with LDA (UK) and a Department of Health funded body, the James Lind Alliance, on documentation of the uncertainties in treatment and diagnosis of Lyme disease.
  
  
• Christian Perronne, of the Infectious Diseases Department of the University of Versailles-St Quentin, France, points out the high variability and sensitivity of serological tests for Lyme disease, how tests do not account for strain varieties, and that other microbial infections may mimic that of Lyme disease. He points out that syndromes of an unknown cause should no longer be referred to as being chronic Lyme disease, and should be investigated for other microbial and non-microbial causes using an open-minded scientific approach.

• Carl Tuttle, of Hudson, New Hampshire, USA, wrote about how his experience of Lyme disease did not seem to match that of Auwaerter's experience, given how many people he knows have suffered serious symptoms with Lyme disease that was not diagnosed early - whereas Auwaerter indicated Lyme disease is easily diagnosed and treated. He mentions the inadequacy of serological testing and how it can lead to late stage cases which went undiagnosed and untreated, and how legislation has been passed in several states which protect doctors who treat Lyme disease patients with long-term antibiotics. He asks if the IDSA is correct in its position, then why is there so much legislation being passed which protects doctors who offer long-term antibiotic treatment?
  
  
• And lastly, Auwaerter et al offers a response to these rebuttals here:
  http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70056-7/fulltext.
  
  Auwaerter et al state that a huge percentage of patients are being improperly diagnosed with chronic Lyme disease by alternative practitioners when these patients have another condition. They point out that serological testing is reliable, and evidence that testing is unreliable would be needed by Mr. Perronne and Mr. Tuttle in order to support their position. Auwaerter et al point out that the current guidelines stand based on independent scientific review and that "Vague symptoms such as chronic pain, fatigue, and neurocognitive complaints are poorly understood by modern medicine but are the focus of this debate." (Ed: The last full paragraph of this response is as long as the previous two put together and is comprised of nothing but a list of stated possible conflicts of interest.)

Comments:

While I agree with a lot of what Ms. Huyshe-Shires had to say, I would like to step away from the argument that "Lyme disease in ______ is different because it's different here".

I've heard this before, and this argument has been made to try to distance European patients from those in the US, with an underlying belief that since European strains are different, that diagnosis and treatment should be determined using European scientists and research - not that of American based IDSA. Fine, but then I will argue that since Europeans also contract Borrelia burgdorferi that they should come up with diagnostic and treatment methods for the US as well!

Scientific research to date has shown that Borreliosis is Borreliosis, whether it is caused by Borrelia burgdorferi, Borrelia afzelii, Borrelia garinii, and a number of other strains. The symptoms produced by these organisms may differ somewhat from one locale to the next, but many have the potential to cause neuroborreliosis, and indeed, even those with a most conservative view of the Lyme disease controversy have stated that there has been too much emphasis on Europe having more neuroborreliosis and different symptoms when the situation is that clinical presentations in the US have been very similar to those in the UK. 

Receiving an early diagnosis and treatment matters regardless of where one is in the world and which strain they have.

I can relate to Mr. Perronne's position, to some degree. I don't think this is a heterogeneous condition - nor was it from the start even if just basing it on those who have had tick bites - since a number of ticks are coinfected with pathogens other than Borrelia burgdorferi/afzelii/garinii. I think it's possible some patients have a different infection which they contracted through a tick bite or perhaps even a tick bite made them more susceptible to a new, undefined infection. More research is needed to determine why this group is heterogeneous, and to study those with a definite history of a tick bite and persisting symptoms very closely (regardless of serological test results) as their own separate group.

Mr. Tuttle's remarks reflect the fact that regardless of what side of the Lyme disease controversy you stand on, people are suffering a lot and heated debates on the state level end up weighing in on the side of the patient. Access to extended treatment is winning - whether the IDSA approves or not.

Auwaerter et al's response, to me, is predictable and to be expected. It would be appreciated if one day they were to focus more on the content of Mr. Perronne's position and join him in it by finding a way to initiate research which directly helps patients who are suffering with persisting symptoms and to stop spending an inordinate amount of time focusing on whether or not certain doctors and patients promote pseudoscientific practices and beliefs. They've already made it quite clear to The Lancet and the public what their position is.

One has to face reality here: If some alternative to current treatment practices is discovered which is safe and effective, patients will use it. In the meantime, patients who are suffering greatly will try any of a number of drugs, antibiotics, herbs, and supplements which are available in order to get well regardless of the IDSA's position on their condition and its treatment.

Whether these attempts to relieve symptoms are scientifically backed or not is irrelevant to someone who is seeking relieve pain and is nearly (if not completely) on the verge of suicide with pain. It is this human element of suffering which Auwaerter et al do not seem to want to contend with and address in a compassionate way - nor in a clinical, scientific way by either engaging in research which directly resolves the controversy or by finding the treatment of all treatments based on their own hypothesis of what causes persisting symptoms.

Patients with persisting post treatment Lyme disease symptoms have often tried mainstream approaches to treating their conditions when they were diagnosed with something other than chronic Lyme disease - only to either experience no improvement or even experience a significant worsening of their condition. The use of steroid-based drugs used for treating rheumatic conditions has been one such example of where patients with chronic Lyme disease have tried them based on an apparent diagnosis of a rheumatic condition - only to get sicker and become more symptomatic. Why is that? Someone needs to research this, too.

At some point I need to write a detailed scientifically cited response to Auwaerter et al's original letter to the Lancet instead of the rant I wrote in response to the abstract alone last year. At the time, I was too personally offended that I and my condition were equated with pseudoscience and my offense led to ranting rather than a rational, objective calling out of each point in the full text with a substantiated counterpoint of my own. 

It's difficult to be without bias. As a person suffering with the fallout from Lyme disease and Babesiosis, I cannot be completely without bias no matter how hard I try. But I can try to read the scientific arguments and research that different parties put forward and weigh them independently of how rotten I feel. It is possible, even if at times difficult. 

In the end, I genuinely want someone to just figure out what has brought me to the level of suffering I've experienced over the past several years - even if in some of that figuring out the cause turns out to differ from that which I've suspected. Fine. Just find it, and find a treatment that gets me back to my old self. 

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19 Chicago Tribune's Dubious Writer Is At It Again...

For those who were not here when this blog started,  a reminder:

This blog began because I wrote commentary in response to last December's Chicago Tribune article, "Chronic Lyme: a dubious diagnosis". I was not pleased with how the topic of Lyme disease was discussed in that article because it focused on doctors' disciplinary records and self-reported charlatans working in alternative medicine - and did not focus on science and clinical microbiology.

The best of my efforts to deconstruct that article is here:
http://campother.blogspot.com/2010/12/chicago-tribune-chronic-lyme-dubious.html

Now, several months later, there is an article in the Chicago Tribune by one of the same authors of the original "Chronic Lyme" article - this time on one specific doctor who has a number of lawsuits and charges on his record.

This was posted early this morning:
http://www.chicagotribune.com/health/ct-met-illinois-lyme-doctor-20110713,0,3542528.story

Well Trine, you've done it again.

My issue with Trine Tsouderos' writing is that it is always written in such a way that the content emphasizes the most controversial topics that could possibly be related to chronic Lyme disease without actually discussing chronic Lyme disease itself.

It's sensationalism, and it is about getting the audience's outrage in print. It's an open invitation for the general public (who is fed up with mainstream medicine and bad doctors, and often rightly so) and skeptics (who do not think Lyme disease can be a persistent infection) to comment on how horrible Lyme literate doctors must be in general if someone specializing in the treatment of chronic Lyme disease has a background such as Dr. Piccirillo's.

Tsouderos' article written last December also focused on two doctors with disciplinary actions on their records. Never once did Trine mention that there are many doctors - both ILADS and non-ILADS doctors - who treat Lyme disease patients with longer than standard courses of antibiotics and help people get their lives back. These doctors have many years of experience treating patients and do not have the kind of disciplinary record which is on display here.

I have a major issue with Tsouderos' previous and current writing on chronic Lyme disease because it does not mention this nor does it mention any of the science and research behind Lyme disease and persistent symptoms.

As an investigative reporter, she could be putting her skills to use and advance science education for the general public if she wrote about research which demonstrates that Borrelia burgdorferi spirochetes can persist after antibiotic treatment and pointed out that researchers are not 100% certain of their significance. They argue over it, just as the IDSA and ILADS argue over it. It would also be beneficial if she mentioned the IDSA's position on supporting an autoimmune response and the molecular mimicry hypothesis as the cause for post-treatment Lyme disease symptoms - but she has never even gotten this far to explain why any researchers support a non-infectious model for persisting symptoms.

Reporting on these aspects of post treatment Lyme disease or what has been called chronic Lyme disease is what fair and balanced reporting would entail. Instead, what we get is pure and unmasked sensationalism geared to getting the most rise out of the audience.

All Trine seems to do is repeatedly point out a litany of bad medical decisions or charges related to a handful of doctors - and in the case of December's Chicago Tribune article - at least for one of those doctors, the charges were dropped.

There is no mention of the Lyme disease patient community's position that doctors who treat Lyme disease with more than the IDSA Lyme disease panel's guidelines recommended amount and duration of antibiotics are subject to being reported by insurance companies solely for that purpose. Nor is there mention of what evidence there is to support the patient community's statements on these reports. Instead, there is no mention of this at all - whether Trine thinks these reports are genuine or not.

Now, with what follows, I am probably going to receive some hate mail because of what I am about to say, but so be it. (I will create a special tab, "Hate mail" at the top of this page just for that purpose. If anyone writes in support of what I say, you too will get your comments on a separate page, "Love letters", or something like that.)

But anyway, I have to call it as I see it:

I have issues with Dr. Piccirillo's decision.

If Dr. Piccirillo was inspired to become an LLMD because he himself contracted Lyme disease and suffered due to it, I admire his desire to help others who have suffered a similar fate. But at the same time, was he hoping that his record would go unnoticed and he could start anew?

Dr. Piccirillo, you realize that doesn't happen when you enter the deep end of the pool in the Lyme disease controversy, don't you? Everyone and everything is scrutinized. To go into one of the most controversial jobs with a number of marks already on one's record adds to the existing public misconceptions and generalizations that are held about LLMDs.

Your decision to make this career move affects patients and reflects on everyone working in the field. If you were in fact by your own admission not the best surgeon and your record reflects charges of incompetence - then was picking a potentially high profile, high demand job such as an LLMD the way to go?

I appreciate your stated desire to do better and your own acknowledgment that you weren't cut out to be a surgeon. I take that with sincerity and at face value. And I understand that it's not your fault that Tsouderos wrote about you this way - through no fault of your own, your story and your past has been dragged out before the public for all to see.

Unfortunately, your past is exactly what they wanted to put on display and what many people would want to know about if you were to become their own doctor. As someone who has the lives of other people in your hands, you are going to be held accountable for what you do and do not do. It follows you; that's how it is.

But to be quite pointed about it, had you been the best doctor in the world and helped many people and harmed none - would Tsouderos have written about your work? Probably not. In terms of Lyme disease reporting, so far Tsouderos is a one trick pony.

Everyone who has read this kind of article realizes that this isn't fair and this isn't balanced reporting. How do you change this situation?

If you want to see balance in the kind of press doctors have been getting, then the media has to provide more coverage for and emphasize doctors who are mainstream, take insurance or charge reasonable fees (e.g. Dr. Cathryn Harbor), are willing to treat patients longer term with antibiotics based on case studies and research, and monitor and care for patients diligently.

We need more experienced doctors to come forward and publish their case studies and conduct new research on longer term antibiotics and other treatments. We need to have the best doctors work on our problems from the beginning and give them more positive exposure, not less. Otherwise, the only kind of story people hear will be the syndicated one which is presented to them across the country in sound bites by Tsouderos and others.

As patients we have our own job to do: Those of us whose symptoms have improved from treatment should be informing people of the positive aspects of treatment and how it has improved our quality of life - and how it has helped many of us return to work and the active lives we had before getting bitten by ticks.

Emphasize the positive. Let people know how treatment has helped you and write and talk about the importance of more research and clinical trials on different treatments for post-treatment Lyme disease. Get the word out there and blog about it, and ask your doctor to work with others and publish research.

This controversy seems never ending and I want it to stop, but things won't change unless what we're doing changes.

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2 Media Watch: Lyme Disease in Huffington Post & Baltimore Sun

CC Photo Credit: debwire

The past couple of days have seen the publication of two opinion pieces on Lyme disease online: Dan Rodricks' commentary, "MPT airing deeply flawed film about Lyme disease", published June 19 in The Baltimore Sun (121 comments and counting), and Leo Galland, MD's, "Lyme Disease Symptoms:Key Facts About This Mysterious Illness", published June 18 in The Huffington Post (278 comments and counting).

The first article is an op-ed piece about how the film, Under Our Skin, was pulled off the air and not shown by one PBS affiliate station in Boston - but is being shown on Maryland's PBS stations. Mr. Rodrick writes about how Philip Baker, research scientist at the NIH and executive director of the ALDF, views the film as being dangerous to public health and "a one-sided and emotionally charged attack on science". The position maintained by Mr. Rodrick is that after the 2009 IDSA Lyme disease panel guidelines review (part of an investigation conducted by Attorney General Blumenthal) and the 2010 report on that review, the gig is up - science has determined that the standard treatment guidelines are proper for the treatment of Lyme disease.

The second article is one doctor's perspective on which symptoms can be present with Lyme disease and what he states are facts about the disease - while making some jabs at the IDSA. Dr. Galland's position is clear: he believes that Lyme disease can be a persistent infection that survives standard antibiotic treatment and that seronegative Lyme disease happens (how often is not stated here either way).

Figures stated in Dr. Galland's short article conflict with Mr. Rodrick's - Dr. Galland states that over 100,000 people contract Lyme disease each year; Mr. Rodrick says it's 30,000 people and fewer people than contract chicken pox annually - as if that is somehow a valid or even worthwhile comparison to make.

They are both wrong, of course: The total number of confirmed cases of Lyme disease that were reported to the CDC in 2009 is 30,000, plus there were fewer than 10,000 probable cases reported that year - but no one knows exactly how many people have been infected.

Even the CDC has stated:

"Between 2008 and 2009 there was a 3.6% increase in confirmed cases and 35.6% increase in probable cases. Much of the increase can be attributed to variability in surveillance practices, although evidence of true emergence exists in certain areas. Because of the burden on endemic states posed by Lyme disease surveillance, some states have modified surveillance protocols to better manage limited resources. States using modified methods, including case estimation, might report decreased case counts."

So a true, hard number is probably never going to be knowable for a variety of reasons, and whatever estimate you supply depends on who you ask and how the data were collected - ask Wolfram Alpha and others where they got their Lyme disease data, how they weighed it, and where extrapolations were made and how. Ask someone else. I'm sure the answers will be different, and again - is there any way to ensure a more accurate estimate if epidemiological studies are cut short due to lack of funding?

Dr. Galland states the IDSA says 95% of Lyme disease patients are cured and that he finds even just a 5% failure rate unreasonable for a bacterial infection (we are all really concerned about MRSA's failure rate, to be certain) but even within the IDSA's own 2006 Lyme disease treatment guidelines, it is stated that there is an up to 10% treatment failure rate in early infection.

Taken from those guidelines:

"Less than 10% of individuals do not respond to antibiotic therapy, as evidenced by the presence of objective clinical manifestations, and rarely is re-treatment required. In general, patients who are more systemically ill (e.g., febrile with significant constitutional complaints) at the time of diagnosis take longer to have a complete response to therapy."

That's early infection - and not the controversial chronic Lyme disease that has been subject to debate. This alone should be concerning to anyone who is bitten by a tick and is infected.

In terms of the responses to each of these articles, I shouldn't be surprised: once again, the Wall Of Polarization has the opportunity to rear its ugly head in comments. This brings me no small amount of grief to read some of the responses (which I am still weeding through and trying to catch up on, knowing full well by posting this entry that more comments will be added to the fray).

My problem with all of this is that both views tend to be oversimplifications which are viewed as suitable grist for the ratings mill - but neither of these articles truly dig into microbiology (and molecular biology) to show how one could match up the rationale for supporting certain treatments (e.g. longer courses of antibiotics) or denying their effectiveness for what may be happening in the host in vivo.

Nowhere in any of these online articles do I see mention of discussions with content such as this:

Tuberculosis is treated longer term with a combination of antibiotics in part because it is intracellular and it can persist. In several studies, there is evidence that mostly extracellular Borrelia burgdorferi is at least conditionally intracellular - but when, and how often? Do we know - or is this something which requires more research, noting here that intracellular obligate parasites are difficult to study? This is important, because their intracellular nature - or lack thereof - would change the duration and form of antibiotic treatment.

Can Lyme disease bacteria persist in the host after antibiotic treatment? Yes, they can persist. But what are they doing there? Are they infectious and can they replicate? Some researchers say yes; some say no. Given this state of affairs, more research on pathogenesis needs to be done.

Can some genotypes result in more severe symptoms of infection? Yes, they can - and if this is so, is it possible that different genotypes require somewhat different (and possibly extended) treatment?

But these questions are not raised in news articles and op-ed pieces online. Relying on expert opinion often is - without any investigation of the foundation supporting that opinion. And this is where these articles fall short for me, in both cases - here an opportunity to engage the public in science education is squandered.

Presented with two opposing points of view, the casual observer is left with a sense of confusion after reading both sides. One makes their appeal to reason and the IDSA's expertise; the other makes their appeal to reason and their clinical expertise; the patient makes an appeal on behalf of their own human suffering. It is not too uncommon to see others respond to this polarization by throwing their hands up in disgust and walking away, not knowing what the truth of the matter is - but in the end, I hope that somehow the gap can be bridged between the search for scientific fact and tending to the chronically ill with care and respect.

At the end of Mr. Rodrick's commentary, he leaves a quote by Philip Baker:

"I believe in providing equal time to those with evidence to support their claims," says Mr. Baker. "But in this case, there is none. One may have differing opinions on matters related to religion, philosophy and politics. However, when it comes to science, peer-reviewed evidence is the gold standard. The producers and advocates of this slick film have no such proof that merits public viewing."

I both disagree and agree with this quote. I think there already is evidence to support some of the claims of those who think Lyme disease can be a persistent infection, and that more research in this area is necessary. I also think that while Under Our Skin has been a great film for portraying the symptoms and trials which patients must endure, it had very limited discussion of the pathogenesis of Lyme disease Borrelia and discussion of scientific research that supports evidence for persistent infection as well as other causes for persisting symptoms.

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8 Lyme Disease And The Alternative Medicine Quandary

Today I want to discuss one aspect of the use of alternative medicine in treating Lyme disease and its coinfections. And that aspect is one of perception, politics, promotion, and demonstrating the need for research.

This is a difficult issue to bring up, because I myself have been divided on it.

I find it to be a bit of a quandary, really.

quan·da·ry/ˈkwänd(ə)rē/Noun

1. Perplexity or uncertainty over what to do in a difficult situation: "Jim is in a quandary".

2. A difficult situation; a practical dilemma.

Prior to my coming down with Lyme disease and coinfections, I became a staunch advocate of Traditional Chinese Medicine (TCM). This was no small deal for me at the time, either - and a surprise to others because I was a total skeptic.

I tried TCM on the advice of a friend, and because they had gifted me with my first acupuncture session. Not wanting their eagerness get the better of them, I told my friend point blank not to expect too much of me in terms of lauding the merits of treatment afterwards because I was, in fact, skeptical.

As it turned out, - to my surprise and relief - acupuncture helped my pain despite my skepticism, so I continued to see an acupuncturist for pain whenever it came up and the cause was not an emergency room level problem.

When I was dealing with a number of upper respiratory infections, asthma, and back pain, I found that a combination of acupuncture and the right selection of Chinese herbs helped reduce my symptoms considerably and shorten the length of time that I suffered... A really bad case of bronchitis was beaten to the ground after a round of some rather earthy pungent and bitter herbal tea that I drank by the gallon for only a few days - when bronchitis was something that typically settled in me and made a home in me for a phlegm-filled month. 

Suffice to say, I was impressed.

And as you can guess, I have no double blind, randomized controlled study to back my experience. No, my experience is mine alone. And I can't tell you how it worked or why, although preliminary studies have shown that acupuncture may lead to the release of endorphins and deepen the relaxation response - thus reducing pain. And some of the herbs that I used have evidence to support their therapeutic use as well.

This is good to know, and having more research and evidence to back my experience only enhances it for me. I like knowing that there is a reason that what I am doing works not only for me - it might work for other people - and that it isn't solely due to some placebo effect.

So you know that when I say I am not totally against Complimentary and Alternative Medicine (CAM), I mean it, based on the above.

However, I am not totally 100% in support of using CAM as a substitute for all allopathic medicine for personal and scientific reasons.

And I don't view all CAM the same way. It's not an all-or-nothing proposition for me: Some CAM is safe and effective; some is at the very least safe even if it is not effective; some is not safe or effective at all.

By the way, I view mainstream allopathic medicine the same way - it has varying degrees of effectiveness and risk as well.

Either way, if a treatment is not safe and effective - whether it is allopathic or alternative, I don't give a damn - I'm not advocating its use.

(Just an aside here, briefly - the issue of what constitutes "safe" versus "not safe" requires an entire post all of its own, because it boils down to defining risk and the ratio of benefits to risks for individual patients... keep that in mind, but on the back burner for now.)

I'd like to turn to the issue of politics and perception.

"The personal is political." 

Have you ever heard that statement? I'm sure many people have at some point. If not, what it means is that your individual choice is a decision that can affect many others once enough individuals make the same decision in great numbers.

For example, the decision to boycott a product:

If one person boycotts a product because the company donates money to a cause they do not support, that's just one person making a choice - but if thousands of people make that choice, it becomes a political movement and has an impact on the company due to lower sales and due to bad press once the boycott is publicized by the media.

In a similar way, a widespread show of support of using alternative medicine in substitution of antibiotics and antiprotozoal medication to treat Lyme disease and its coinfections could be viewed by many doctors, medical associations, members of the media, alternative medicine companies and practitioners - and even the IDSA guidelines panel for Lyme disease as communicating this message:

Lyme disease patients do not need serious antimicrobial medications if they are relying on treatments which are not supported by scientific evidence and clinical trials, and if patients have rejected the use of allopathic medicine.

The personal is political here, too.

Replacing antibiotics and antiprotozoal medication may be an individual choice, but if enough people do it, it can become a movement of its own. I am concerned that it can take on the appearance of a boycott.

The more people collectively focus on alternative treatment, the more it sends the message to others that the IDSA guidelines panel is right about something: Antibiotic treatment does not treat this infectious disease, and of course it doesn't, because it isn't a real infectious disease - it's Post Lyme Disease Syndrome, and there is no treatment for that.

Wait... you disagree with that? Is that what I hear you saying through that tangle of cables and satellite uplinks?

I'm listening... You're also saying what? That just because you treat Lyme disease and coinfections with herbs and supplements alone that doesn't mean that you're against antibiotic treatment for someone else?

Oh. Phew. Okay. I'm relieved to hear that... You support my freedom of choice to use antibiotics. And anything alternative I choose to use. Good to know.

Yet at the same time, please keep the big picture in mind and try to see where I'm coming from with all this:

The IDSA guidelines panel says that all you can do to treat PLDS is to treat it symptomatically. And they will continue to say to the public, in so many words, "We don't know what causes it, though we suspect some autoimmune disorder, and maybe somewhere down the line we'll come up with some way to deal with it."

And in journals for clinical microbiologists and molecular biologists - especially those slaving away in graduate school and on post docs - they'll say, "Let's develop vaccines because, you know, we don't want anyone else to contract Lyme disease that goes undiagnosed due to the delayed antibody response then have that turn into late stage Lyme disease. Vaccines FTW!"

And so, the system perpetuates itself, and the next generation of new researchers will say, "Maybe we can prevent more problems before they can even begin, and make money while we're at it, too. There's no money in antibiotic development - and there's not enough evidence Lyme disease can be a persistent infection - even if some spirochetes are left behind after initial treatment. Everyone says those 'chetes are not capable of reproducing and those unfortunate PLDS patients have some autoimmune disorder. Time to get to work on those vaccines and test kits!"

And they'll do it. Not because they necessarily want to screw over Lyme disease patients, but because this is what they have learned and know. And if they investigate what patients are doing online, their five minutes of direct observation of the patient community - if it happens at all - will be that of patients trying a lot of alternative treatments. Not of patients pushing for better treatment and cures from established allopathic medical associations and research institutions.

Maybe I'm wrong in this observation, and I'm willing to be corrected. But just as an experiment, why not try this? Go to Lymenet, Lymefriends, Lyme_fillintheblankhere_, and/or your Lyme disease support mailing list of choice, and count how many posts are about alternative treatments, protocols, herbs, and supplements. Then count the number of posts about organizing a petition for or backing a bill for more research, posts asking how antibiotic use addresses antigenic variation, or fundraising or protests in support of more research. Then tell me what the numbers are for each.

Dr. Cathyrn Harbor helps a
Lyme disease patient.

As I've said before, I don't think all alternative, complementary, or integrative medicine is a bad idea. It has its time and place, and that time and place is based on a personal decision between the patient and their doctor. Each person's treatment for Lyme disease and coinfections is individualized anyway - this is what everyone has been saying on the boards and mailing lists all along - and this is also what LLMDs and naturopaths have said as well

This patient-doctor approach of an individualized care plan tailored to the person is different from having patients and supplement companies and their representatives supporting the widespread use of alternative medicine online in patient support forums and mailing lists, and offline in support groups, fundraisers, workshops, and rallies.

Whether it is intentional or unintentional, the message being supported and sent to the medical community at large when so much focus is on alternative protocols is that patients do not need the serious medical treatment that has been scientifically proven to at least diminish if not entirely beat infectious disease. Either existing evidence-based treatments or research for new ones.

And who suffers from all of this? We do.

Those of us who show symptoms of persistent late stage infection.

Those of us who have already been abandoned by mainstream medical doctors and told that it's all in our heads, that our conditions are psychosomatic - rather than being told that it's possible we have infections that have disseminated to our central nervous systems and possibly our brains, since Borrelia is neurotropic and can disseminate to the CNS and brain early in infection.

With the general number of Lyme disease infections on the increase, does anyone even know how many people have CNS issues early in infection which may go untreated or under-treated because the symptom presentation can overlap with other conditions?

Especially without early positive antibody responses on tests?

Who is tracking these patient cases accurately, and who is following up on these patients months and years later? If it weren't for LLMDs and a small group of researchers, would anyone even have the slightest clue?

Infection could be literally in our heads. And not manifesting as some psychosomatic disorder, which is a convenient label by those who do not want to deal with the hassle insurance companies will wage over necessary IV antibiotic treatment - or the professional scrutiny that will come from other doctors in your clinic if you begin treating more patients with high doses of antibiotics.

So I look at this entire situation with a wary eye, and see that the situation as it is is currently self-perpetuating - even as I myself have used alternative treatment from time to time.

Japanese knotweed

This isn't about whether or not you as an individual decide to use alternative treatments.

I support your individual freedom to choose, as I hope you support mine.

This is about whether or not promoting them wholesale above and in place of the use of antibiotics and antiprotozoal medication is a good idea.

This is about whether or not there has been some widespread sense of dejection after the July 2009 IDSA Lyme disease panel review that has taken steam away from the push for more research.

This is about whether or not doctors who treat Lyme disease and coinfections - LLMDs - should include alternative treatments as part of their official treatment protocols and guideline statements... So much is already at stake for needing to have solid scientific evidence that patients suffer from a serious infection with severe chronic symptoms that can be effectively treated with known and tested antibiotics - let alone anything else.

This is about whether or not alternative medicine is effective for attacking the infections directly and - without empirical evidence of that happening in vivo - what using them actually is doing to help patients.

This is about whether or not testing these alternatives is adding an additional layer of division of forces, resources, and energy in trying to get funding for research when the basic fact of persistence along with persisting infection is what needs to be established.

This is about whether or not the amount and quality of existing research supports the long-term treatment of Lyme disease as a chronic infection - versus statements about its being some other condition.

Outside of these issues, there remain a lot of unanswered questions about the use of alternative medicine for the treatment of Lyme disease and coinfections, such as: How does one know that some of the alternative medicine being used has an anti-inflammatory effect versus an antimicrobial one? How does anyone know that even if some herbs can help with immunomodulation that there isn't some infection festering and reproducing despite it?

The problem is, we don't. And even as I support the use of alternative treatments for symptom reduction and improvement, and even as I want to alleviate my own suffering as much as I can - I don't, either.

And I'd really like to know what can truly fight off this infection or condition and use it and move on with my life. In five years, I've already seen so many different treatments come into vogue and fade into obscurity.

So far, there is nothing in the alternative medicine chest that has a long term clinically-proven history of beating back and curing spirochetal infections - anything from modern formulations to traditional Chinese medicine (TCM). Even the naturopath from Bastyr University whom I consulted advocated for the use of antibiotics - herbs and supplements were advised to be used in a supportive capacity only.

There will be readers here who disagree with these statements, and I understand your position - especially if in your experience you have had success through the use of herbal treatment plans. I ask you to please consider that while I'm aware that Lyme disease and its coinfection treatment is based on individual response and herbs may have helped you, that the heavy promotion of alternative treatments without the use of antibiotics and antiprotozoal medications for everyone can and does have a negative impact on the Lyme patient community.

And if the heavy promotion to replace conventional antimicrobial medicine with alternative treatments takes the emphasis away from confronting and demanding from scientific researchers and mainstream medicine a more effective treatment protocol that insurers will cover and research to settle the "does Lyme disease cause a persistent infection"controversy - the powers that be are not being held accountable for the failure of the modern medical system to address the issue of chronic Lyme disease and coinfections. 

The parties which put us in this position should be held accountable. If nothing else, you are paying taxes that finance these guys and cover some of their research. Hold them accountable. Demand value for your money as a taxpayer. Demand answers.

Ask them, "Where is the research on persistence that would solve this controversy? " Ask them, "When are you going to publish these pay-for-access research papers on open access servers so the public and media can read without a subscription - my taxes paid for the research that went into that paper?"

Ask them when they're going to do more to educate the public and primary care physicians about the need for follow up testing for Lyme disease if initial testing after a tick bite is negative, due to low antibody response early in the infection...

Ask them specific questions. Pointed, intelligent, well-researched, and decisive questions. Ask, then ask some more.

More doctors need to recognize, diagnose, and treat Lyme disease and other coinfections in its early stages. More need to be educated in the pathogenesis and possibilities of neuroborreliosis. More thorough tracking of patient cases over months and years needs to take place, with primary care physicians giving patients accurate Lyme disease tests two months, six months, and a year or maybe even more after symptoms show up and not just rely on the first negative ELISA test as definitive. Same goes for tests for coinfections. And don't even get me started on the relationship with insurance companies... long term treatment should be covered if there is evidence it is needed by individual patients - rather than have patients not only shell out money for LLMD appointments but exorbitant amounts for antibiotics, too.

This isn't going to change unless the focus shifts towards addressing the issue of persistence of infection and demanding more research on it.

What do you think? Do you disagree or agree? Why or why not?


I'd love to hear your perspective - as I've said, this has been a difficult topic for me, and one over which I have been divided in my opinion.

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33 Having a Dialog About Censorship

This has been a crazy week here at Camp Other.

I was originally going to post my usual Friday Four science column, but it may just slide to the Saturday Six or something like that.

I have something else to say now, and I'll post more science later.

This post isn't about being banned from a forum, if you were expecting to hear more about that... Yes, I was puzzled why I got banned, and so were others. It happened, I wrote about it, and then I was going to move on.

However, I can't completely move on without saying a few things about the comments I've been receiving.

Right now, what I'm hearing and seeing is that people have been asked on the forum to not even mention the name, "Camp Other".

Not to speak about it, and any attempts to discuss it will lead to the thread being closed.  A request was made to PM the moderators about anything having to do with Camp Other instead.

And I'm also getting comments and reports about other people who think they've been censored, and think censorship on various groups has gotten out of hand.

Why I'm being censored now, I don't know - I consider this the hallmark of absurdity.

First banned, now censored?

This is a blog about science and social issues surrounding Lyme disease and other tickborne infections.

Mentioning this blog anywhere really shouldn't be that controversial... I don't think anything I've said anywhere online is that particularly controversial, other than occasionally I mention the somewhat-controversial-to-mainstream-medicine-IDSA-guidelines idea that Lyme disease might be a persistent, chronic infection.

But I want to say something about the people left behind, because what is happening there is controversial:

People shouldn't have to be in fear of what they say getting taken out of context, or be afraid to ask or be asked a challenging question - or be afraid, perhaps, of not saying something quite the right way using the right words.

What we need to do when people disagree, or challenge assumptions, or ask for more information is to simply respond to that: Have a dialog. Talk. Discuss.

A lot of misunderstandings that people have can be cleared up when they have  a meta-discussion - which is a discussion about how we discuss things and why we discuss things the way we do.

Shutting people down, kicking them out, closing the door, and putting earplugs on doesn't make them go away. They're still out there, saying something to someone - maybe even about you - only now you can't hear them.

Even if you can't hear them and they are far away, chances are the ideas they hold dear and the values they possess may be found in the next person who comes in the door, a stranger who greets you, or a random person who shows up on an online forum.

And then you will have to deal with those same ideas, same values, and other things you may disagree with or be challenged by.

People will also have an effect on those they leave behind whenever they go away - there are always ripples in their absence, whether they left because they were banned, left of their own free will, left because their computer died, left due to poor health, or any of a number of reasons.

Because when it comes to being amongst other patients - we all ultimately share in the same suffering and want the same things. And we notice that absence.

What makes a support group what it is is the patients, more than anyone else. And the needs of patients are what is paramount: building community, research, safety, understanding, proper diagnosis and treatment, and support. And just knowing that we're reaching out to others who are going through - or have gone through - the same things we have.

Maybe how each of us express our needs for those things differs, and maybe how we hope to achieve it differs - but the bottom line is that through dialog we can discuss those differences rather than deny them, or push them away.

Censorship is not the way to go. More communication is, in my opinion. Even if it's somewhat messy and misunderstandings take place. That's what compassion and forgiveness are for - allowing mistakes and accepting apologies.

If someone is truly being egregious in their behavior on a forum, that's one thing - and I think one has to draw the line somewhere. Somewhere reasonable.

I may have only been on this one forum for a few months, but that's enough time to see how things went - and it's particularly telling how things went after I've been gone. When people voluntarily leave due to censorship and people try to leave because they want out, that's saying something about the atmosphere they're in.

I don't like it.

I want anyone who posts comments to my blog to know that I will do my best not to censor any of you and let you speak your mind. Obviously you have to follow Blogger's terms of service - I have no control over those - and I have a rule that when you're discussing personal physicians, that you do not use their name or initial (use "my doctor" or  "a friend's doctor"), unless it's in relationship to something they said in the media or a published paper.

That's it. I really don't have any other rules, other than don't spam my blog or phish for information.

I think the time is ripe for more meta-discussions that I don't see anyone having, and those are the discussions about discussions which get shut down before they even start.

My main question is: Have you been censored and what can we do about censorship on patient forums?

If you are a Lyme disease patient and you want to discuss being censored or being banned online yourself, please leave a comment. You can still be Anonymous or use a username - either way,  I'll post your comment after it clears my spam filter.

If you are a Lyme disease patient and you want to bring up the discussion of censorship in general - especially in what changes you'd like to see in the way discussions online are handled - please drop me a comment.

Let's open dialog up, and see what happens.

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

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

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

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


Lonnie K  (IOM mod) asked:

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

And Pam said:

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

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

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

This.

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

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

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

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

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

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

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

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

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

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

Ten years.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think this is THE issue: persistence. 

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

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

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

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