5 THIS FRIDAY: Lyme Disease chat with Dr. Lawrence Zemel and Dr. Daniel Cameron

Well.

This could get interesting?

If you're awake and in the right time zone, this Friday, July 1 at 12 pm (EST) there will be a live online chat between the IDSA's Dr. Lawrence Zemel and ILADS' Dr. Daniel Cameron.

From the Hartford Courant:

Chronic Lyme disease: Does it exist and should it be treated with long-term antibiotics? Join us for a live chat Friday, July 1 at noon EST (11 am CST, 10 am MST, 9 am PST) about Lyme disease, including the controversial issue of whether patients should be treated with long-term antibiotics for chronic Lyme disease. Morning Call health reporter Milton D. Carrero will chat with representatives from the two main organizations managing the treatment of Lyme disease in the United States. Dr. Lawrence Zemel of the Infectious Diseases Society of America and Dr. Daniel Cameron from the International Lyme and Associated Diseases Society will answer your questions. Send questions in advance to milton.carrero@mcall.com.

Dr. Lawrence Zemel is Chief of the Division of Rheumatology at the CT Children's Medical Center and Professor of Pediatrics at the University of Connecticut. Dr. Zemel is a graduate of New York's Brooklyn College and SUNY Buffalo followed by residency at Buffalo's Children's Hospital and fellowships at Tufts-New England Medical Center and Boston Children's Hospital. Dr. Zemel, works in the field of Pediatric Rheumatology and Pediatrics, and has expertise in multiple areas, including Lyme Disease, Antiphospholipid Syndrome (APS) and Juvenile Rheumatoid Arthritis.

Dr. Daniel Cameron graduated from the University of Minnesota School of Medicine and Public Health followed by residencies at Beth Israel Medical Center and Mt. Sinai School of Medicine in New York. Dr. Cameron is widely recognized for conducting epidemiologic research while practicing medicine. He has been viewed as a pioneer in Lyme disease as an author of practice guidelines, analytic reviews, and clinical trials. He currently sees patients in his private practice in Mt. Kisco, New York while continuing his research and writing. He maintains the website LymeProject.com.

Link Source: http://www.courant.com/health/mc-health-chat-lyme-disease,0,4675217.htmlstory

Here's my suggestion to you, if you can participate:

I know many of you reading along are Lyme disease patients and you are likely to want to ask Dr. Cameron questions about treatment. That's understandable and okay, but you can ask him these questions any time because he will be willing to help you. What I recommend you do instead write up very specific scientific questions to ask Dr. Zemel - such as "How much time does Borrelia burgdorferi spend in intracellular space and what research have you conducted beyond the fibroblast research?" and "Why does the Lyme guidelines panel state there is no evidence that Lyme disease can persist after antibiotic treatment when there are a number of human case studies and animal studies which provide evidence to the contrary?" - and email them to milton.carrero@mcall.com ASAP.


This is the time to ask an IDSA member about their position and ask them to substantiate it. Opportunities like this do not happen all the time. Use it wisely.

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19 Commentary: A Letter From The CDC To Lyme Patients

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

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

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

---

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

Hello,

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

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

Sincerely,

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

---

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What evidence do they have that this is true?

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

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

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

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

This is true to a degree.

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

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

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

Hey, this is me.

At least I think so?

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

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

By their definition, was I treated properly?

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

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

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

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

To which I have to ask:

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

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

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

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

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

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

Three different statements are packed into this one.

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

and

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

and

3) No long lasting improvement was shown over placebo.

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

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

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

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

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

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

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

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

This is true.

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

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

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

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

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

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

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

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

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

And?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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6 Dr. Elizabeth Maloney On The IDSA Lyme Disease Guidelines

Recently, a commenter on Dr. Galland's article shared this link with me on one doctor's analysis of the 2006 IDSA Lyme disease panel guidelines.

Link source: http://www.peh-med.com/content/5/1/9/comments
(In reference to Philosophy, Ethics, and Humanities in Medicine 2010, 5:9 doi:10.1186/1747-5341-5-9)

I wanted to post Dr. Maloney's comment in its entirety here, for your review and consideration.

You can also see a 20 minute video presentation she did on ILADS containing this analysis:
http://www.ilads.org/lyme_disease/media/lyme_video_maloney.html

I will be evaluating her analysis and referring to the studies she cites - but in the meantime, if you are already more familiar with her analysis, please feel free to offer your own perspective on it in comments.

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Insufficient Evidence and Poor Outcomes: IDSA Treatment Recommendations
Rightly Ignored

Elizabeth Maloney (2010-07-10 18:18)

Comments from IDSA president, Dr. Richard J. Whitley, suggest that he fully believes that “the best defense is a good offense”. Instead of addressing the shortcomings of the IDSA guidelines on Lyme disease, of which there are many, he assails Dr. Stricker and Ms. Johnson for not providing evidence that long-term treatments are valid.[1] He also tries to distract readers from considering the weak scientific underpinnings of the IDSA guidelines by raising the specter of unending courses of IV antibiotics and “life-threatening drug-resistant superbugs”; readers should not be fooled by such tactics.

Organizations which create treatment guidelines are obligated to prove the validity of their recommendations. This requires them to disclose the strength of their evidence so clinicians can use this information to judge the merits of the treatment recommendations. Because the IDSA Lyme guidelines issued 72 graded recommendations, it is easy for clinicians to lose sight of the fact that 54% of these, including 17 strong recommendations, were based on panel opinion.[2] Other guidelines developers, such as the American Academy of Pediatrics, require that the strength of a recommendation be matched to the strength of the underlying evidence;[3] unlike the IDSA, AAP would not restrict treatment options, via strong recommendations, purely on the basis of panel opinion.

The evidence strength ratings assigned by guidelines panels must be justifiable; even the pedestrian, IDSA-chosen review panel recognized that the strength of the supporting evidence had been stretched to reach the single-dose doxycycline prophylaxis recommendation.[4] And, evaluating the strength of an individual study requires more than a casual glance at the abstract and conclusion. When the article in question is written by a panelist on the 2006 guidelines, the examination should be especially vigorous so as to withstand charges of professional cronyism. This is also true when recommendations are issued to address areas of medical controversy.

This clearly did not happen with the IDSA guidelines. Consider the issue of treatment duration for erythema migrans, a contentious topic. The IDSA guidelines panel cited 8 prospective studies to support its recommendation; of these, only 2 investigated doxycycline regimens employing brief, 10 day treatment durations. In the study by Mazzarotti et al, the authors claimed the 10-day doxycycline arm had a 95% success rate.[5] However, of the 22 patients randomized to and completing this treatment, 7 were immediately retreated with doxycycline or amoxicillin and another patient later required IV ceftriaxone. Thus, 10 days of doxycycline failed to cure 36% of the patients, not 5%. One would think that such a gross overstatement of treatment success would have been caught by a diligent guideline panel; panelist Steere, as one of Mazzarotti’s co-authors, may have been best positioned to prevent the inclusion of this study in the guidelines. The other study, by guidelines panelist Wormser, had excessive drop-out rates.[6] At the study’s completion 49% of the subjects were “unevaluable”; at the earlier 12 month evaluation, 29% of the patients were already “unevaluable.” Biostatisticians warn against drawing outcome conclusions when drop-out rates exceed 20%;[7] thus, the panel also erred in citing the study by Wormser as supportive. If these studies are representative of what the IDSA considers “sound scientific evidence”, perhaps it is premature to be making recommendations in the first place.

After discovering a lack of support for the 10 day doxycycline regimen, I re-evaluated the data from the other 6 trials cited as supportive evidence for the early Lyme disease treatment recommendations.[8-13] During that process, I reanalyzed the outcome data using intent-to-treat methodology (ITT) as opposed to the complete-case(cc) or last-observation-carried-forward (LOCF) methods used in the original papers. ITT is the method preferred because CC and LOCF overstate treatment outcomes.[14] Differences in study designs and in the definitions of treatment success, improvement and failure make direct comparisons difficult but if success is defined as a return to the pre-morbid baseline without relapse during the observation period, then the overall success rates for doxycycline, amoxicillin and cefuroxime are roughly 65%. While this may seem incredulous to many, the review panel, which received my analysis in the course of its deliberations, suggested that future guidelines describe the first-line agents as “effective” rather than “highly effective”.[4]

Dr. Whitley expressed concerns regarding the use of long-term antibiotics in patients with persistent symptoms. There can be no doubt that such approaches carry risks but those risks must be weighed in light of the situation for which they are employed; this is not a case of using sledgehammer to swat a fly. The disease burden in this group is quite high, as the retreatment trials demonstrated.[15-17]

The IDSA guidelines also prohibit retreatment for patients with late neurologic Lyme disease who remain symptomatic following 30 days of ceftriaxone. This restriction is based on scant evidence. The guidelines cite only 4 trials, with a total of 96 patients representing a limited disease spectrum, which can be analyzed in terms of neurologic outcomes.[18-21] In this very small cohort, treatment successfully restored health in only 7 – 35% of the patients. Such a poor outcome is unacceptable for a patient group burdened with a disease causing a profoundly negative impact on the quality of their lives.

While physicians are cautioned to do no harm, it is clear that for the majority of patients with late neurologic Lyme disease, doing nothing more is harmful. To appease those looking for a scientific basis for additional antibiotic therapy, I suggest they read the 1999 study by Logigian et al.[21] In that open label trial using 30 days of ceftriaxone, one patient (who was well at the 6 month evaluation) reported a relapse, supported by a deterioration in his verbal and visual memory, 2 months later. Based on that information, the authors retreated him with 30 additional days of ceftriaxone and he demonstrated sustained improvement. Given that Steere served on the original guidelines panel and co-authored this paper, it is curious that the IDSA recommends against retreatment. Given the poor outcomes to shorter treatment durations and the disease burden, it is unconscionable.

Similarly detailed critiques can be made for the other major recommendations. Rather than shoot the messengers (Dr. Stricker and Ms. Johnson), Dr. Whitley should heed the message: the IDSA failed, in its initial and review efforts, to create impartial, conflict-free, evidence-based guidelines. Moreover, the errors of the guidelines panel were compounded by the review panel, which had an obligation to provide an unbiased review and right these transparent errors. Those of us who understand the situation lack mechanisms to resolve it. The duty remains with the IDSA members; physicians, heal thyselves.

References
1. Whitley RJ. IDSA Response to Stricker and Johnson. http://www.peh-med.com/content/5/1/9/comments
2. Wormser GP, Dattwyler RJ, Shapiro ED, Halperin JJ, Steere AC, Klempner MS, Krause PJ, Bakken JS, Strle F, Stanek G, Bockenstedt L, Fish D, Dumler JS, Nadelman RB. The clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America. Clin Infect Dis 2006;43(9):1089-134.
3. American Academy of Pediatrics: Steering Committee on Quality Improvement and Management. Classifying Recommendations for Clinical Practice Guidelines. Pediatrics 2004;114;874-877.
4. Infectious Diseases Society of America: Final Report of the Lyme Disease Review Panel of the Infectious Diseases Society of America. April 22, 2010. http://www.idsociety.org/Content.aspx?id=16499
5. Massarotti EM, Luger SW, Rahn DW, et al.. Treatment of early Lyme disease. Am J Med 1992; 92:396–403.
6. Wormser GP, Ramanathan R, Nowakowski J, et al.. Duration of antibiotic therapy for early Lyme disease: a randomized, double-blind, placebo-controlled trial. Ann Intern Med 2003; 138:697–704.
7. Schulz K, Grimes D. Sample size slippages in randomised trials: exclusions and the lost and wayward. Lancet 2002; 359: 781–85.
8. Luft BJ, Dattwyler RJ, Johnson RC, et al.. Azithromycin compared with amoxicillin in the treatment of erythema migrans: a double blind, randomized, controlled trial. Ann Intern Med 1996; 124:785–91.
9. Dattwyler RJ, Volkman DJ, Conaty SM, Platkin SP, Luft BJ. Amoxicillin plus probenecid versus doxycycline for treatment of erythema migrans borreliosis. Lancet 1990; 336:1404–6.
10. Eppes SC, Childs JA. Comparative study of cefuroxime axetil versus amoxicillin in children with early Lyme disease. Pediatrics 2002; 109:1173–7.
11. Nadelman RB, Luger SW, Frank E, et al.. Comparison of cefuroxime axetil and doxycycline in the treatment of early Lyme disease. Ann Intern Med 1992; 117:273–80.
12. Luger SW, Paparone P, Wormser GP, et al.. Comparison of cefuroxime axetil and doxycycline in treatment of patients with early Lyme disease associated with erythema migrans. Antimicrob Agents Chemother 1995; 39:661–7.
13. Dattwyler RJ, Luft BJ, Kunkel M, et al.. Ceftriaxone compared with doxycycline for the treatment of acute disseminated Lyme disease. N Engl J Med 1997; 337:289–94.
14. Fitzmaurice GM, Laird NM, Ware JH. Applied Longitudinal Analysis. Hoboken, N.J. Wiley-Interscience, ©2004; pp 391-4.
15. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001;345(2):85–92.
16. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology 2003;60(12):1923–30.
17. Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, Slavov I, Cheng J, Dobkin J, Nelson DR, Sackeim HA. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology 2008;70:992-1003.
18. Dattwyler RJ, Halperin JJ, Pass H, Luft BJ. Ceftriaxone as effective therapy for refractory Lyme disease. J Infect Dis 1987;155:1322–5.
19. Dattwyler RJ, Halperin JJ, Volkman DJ, Luft BJ. Treatment of late Lyme borreliosis—randomized comparison of ceftriaxone and penicillin. Lancet 1988; 1:1191–4.
20. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med 1990; 323:1438–44.
21. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis 1999;180:377–83.

Competing interests: None

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0 News Article: Ticks, Squirrels, Lizards, and Spirochetes.

While googling for Lyme disease related news to post, I came across this article - if you live on the west coast of the United States, it may be of interest to you.

It's an article about Dr. Robert Lane's studies on Lyme disease vectors. You may have heard about Dr. Lane's studies on western fence lizards and how they have proteins in their blood that stops Borrelia burgdorferi in its tracks.

Well, there is some mention of that older research in this article - but there is also new research on western gray squirrels as the primary reservoir host for Lyme disease in California.

Two short excerpts:

"The last time I wrote about the disease was eleven years ago, shortly after May Kuo, then one of Lane’s graduate students, had identified the substance in the blood of western fence lizards and southern alligator lizards that kills the Lyme disease spirochete Borrelia burgdorferi. An infected western black-legged tick (Ixodes pacificus) can no longer transmit the disease after a blood meal from one of either of these lizard species. The substance, for the record, is a set of proteins called the alternative complement pathway. It’s a good thing both lizards are abundant within the tick’s California range. Other lizards have no apparent effect on the pathogen."

and

"Broadening the search, another team trapped a total of 222 western gray squirrels at China Camp State Park in Marin County, Annandel State Park in Sonoma County, and, once again, Hopland, as well as other areas from Humboldt County to Los Angeles. The prevalence of B. burgdorferi infection was highest in the northwestern counties. The researchers also found a strong relationship between western gray squirrel infection prevalence and the incidence rates of human cases of Lyme disease on a county basis."

Much more at this link - check it out:
Ticks, Squirrels, Lizards, and Spirochetes.

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

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

Check this article out:

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

Summary Teaser:

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

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

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

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0 Blog Log: My Lyme Disease Story

I wanted to point out a relatively new Lyme disease blog on the block, My Lyme Disease Story.

The author has been a practicing MD who was bitten by a tick somewhere inside of Yosemite in 2010, developed the EM rash and other symptoms, was undertreated, and eventually sought the care of an LLMD.

I usually don't write much about personal blogs, tending to focus on science-oriented ones instead - but this is a rare occasion to see how a doctor approaches the same conditions and illnesses their patients must face. So far, she is facing Lyme disease with blunt honesty and eloquence - her recent description of suicidal ideation is a well-written post on the darker nights and thoughts of many living with pain and loss of functionality.

This most recent entry is a hard read and not for the faint of heart - it may prove triggery for some:

http://mylymediseasestory.blogspot.com/2011/06/depths-of-darkness-and-despair.html

I recommend not stopping there, and reading all entries to date.

And if you are reading this and are a Lyme disease/tickborne illness patient, please stop by and offer words of support and encouragement - as well as your knowledge and experience. This is the beginning for her and I hope she does well and recovers soon.

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16 Comments On the Huffington Post - Dr. Leo Galland

I didn't want Dr. Galland's recent efforts to go unnoticed at the Huffington Post, so I posted him a little comment:

"Dr. Galland,

Thank you for an informativ­e post that outlines some of the symptoms of Lyme disease as well as facts about its transmissi­on and difficulti­es in testing for it. I really appreciate­, too, that you have offered a list of citations for people to read to get more informatio­n.

I've had persisting symptoms related to LD and other coinfectio­ns. Looking back on it, I can't help but think that my current situation could have been avoided had the first doctor who had seen me recognized my EM for what it was and given me enough antibiotic­s right there on the spot. Instead I was told there is no Lyme disease in the area where I was bitten and my saved tick was tossed.

If doctors aren't even following the IDSA Lyme disease guidelines for early textbook infections in patients at a bare minimum, patients are getting underdiagn­osed and then end up becoming part of the controvers­y that is chronic Lyme disease.

This doctor on Blogger (My Lyme Disease Story) is getting treated for Lyme disease - she understand­s the patients' fight to get well. She had little training on Lyme disease in med school and wasn't advised on its dx in daily practice. If tests aren't that accurate early on, then doctors must rely on a clinical diagnosis to treat the patient properly. How does one ensure this happens so that people do not have to go through what I and others have been through?"

That is not the comment I wanted to post, though. It is a highly reduced and edited one in comparison to what I intended - even though it gets the gist across.

In the process of posting comments, I learned that the Huffington Post has a 250 word comment limit - something I wasn't expecting, and I had to cut an additional 300 words from my post and separate it into a different comment. Two hours later, and my other comment has yet to be posted. It read:

"On another note, in general: I really would appreciate it if the media began discussing the pathogenesis of Lyme disease and we began raising the bar on how Lyme disease is covered as a topic. We need more scientific research, and for research that's already out there to be discussed in the media. We need more intelligent discourse that goes beyond, "the IDSA Lyme guidelines panel is an authoritative voice in this argument" vs. "the doctors who treat this condition, chronic Lyme, are wrong".

It's an oversimplification of what's going on and sets up a situation that readily polarizes the audience. There is so much going on that most newspaper articles only just begin to scratch the surface.

I have been devoting a fair chunk of my time in writing a blog about these issues and discussing research on Lyme disease and other tickborne diseases - as well as microbiology in general. I would love to see more efforts online to get the word out about what is known and not known about tickborne diseases from a scientific perspective."

I commented on a few other posts made there, and I could comment more to individual people - but I think next up I want to leave comments on Dan Rodrick's op-ed piece.

I wish I knew in advance when Lyme disease related articles were going to be posted to major news outlets so I could read them and comment sooner. Maybe I need some sort of daily script I can run that looks for key words... that would probably help.

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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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0 Paper: Borrelia burgdorferi RST1 (OspC Type A) Genotype Is Associated with Greater Inflammation and More Severe Lyme Disease.

This one is from Steere and company... check it out.

Source link: http://www.ncbi.nlm.nih.gov/pubmed/21641395

Borrelia burgdorferi RST1 (OspC Type A) Genotype Is Associated with Greater Inflammation and More Severe Lyme Disease.
Strle K, Jones KL, Drouin EE, Li X, Steere AC.
Am J Pathol. 2011 Jun;178(6):2726-39.

Division of Rheumatology, Allergy and Immunology, the Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts.

Abstract

Evidence is emerging for differential pathogenicity among Borrelia burgdorferi genotypes in the United States. By using two linked genotyping systems, ribosomal RNA intergenic spacer type (RST) and outer surface protein C (OspC), we studied the inflammatory potential of B. burgdorferi genotypes in cells and patients with erythema migrans or Lyme arthritis. When macrophages were stimulated with 10 isolates of each RST1, RST2, or RST3 strain, RST1 (OspC type A)-stimulated cells expressed significantly higher levels of IL-6, IL-8, chemokine ligand (CCL) 3, CCL4, tumor necrosis factor, and IL-1β, factors associated with innate immune responses. In peripheral blood mononuclear cells, RST1 strains again stimulated significantly higher levels of these mediators. Moreover, compared with RST2, RST1 isolates induced significantly more interferon (IFN)-α, IFN-γ, and CXCL10, which are needed for adaptive immune responses; however, OspC type I (RST3) approached RST1 (OspC type A) in stimulating these adaptive immune mediators. Similarly, serum samples from patients with erythema migrans who were infected with the RST1 genotype had significantly higher levels of almost all of these mediators, including exceptionally high levels of IFN-γ-inducible chemokines, CCL2, CXCL9, and CXCL10; and this pronounced inflammatory response was associated with more symptomatic infection. Differences among genotypes were not as great in patients with Lyme arthritis, but those infected with RST1 strains more often had antibiotic-refractory arthritis. Thus, the B. burgdorferi RST1 (OspC type A) genotype, followed by the RST3 (OspC type I) genotype, causes greater inflammation and more severe disease, establishing a link between spirochetal virulence and host inflammation.

Comments for the moment:

Evidence is emerging? No, actually, this is old news. Dr. Ben Luft and others already knew that genotypes of Bb had differential pathogenicity. Symptom presentation and severity of disease can vary greatly - this is part of the conundrum with Lyme disease.

In terms of mentioning inflammatory response, one thing I want to tease out is the relationship between spirochetal load and inflammatory response versus pathogenicity of genotype and inflammatory response.

In addition to this, on an unrelated note, it would be good to know if particular genotypes are more likely to spend more time in intracellular space and if persister cells contribute to relapsing, chronic infection.

More about this later...

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1 Paper: Fluorescent Bead-Based Multiplex Assay (For Detection of Bb Antibodies)

I was originally going to write on a paper on Borrelia burgdorferi and lymphadenopathy that has been making the rounds, but the following link was sent to me and I think it deserves more immediate attention:

http://ahdc.vet.cornell.edu/docs/Scopes_2011_02.pdf

Following this link, on page 6 of the document is an interview with Dr. Bettina Wagner, Assistant Professor of Equine Health at Cornell University, on the use of a Lyme disease blood test for dogs which is more accurate than earlier tests.

The test uses a technology known as bead-based multiplex technology, a technology that has been in use for the past decade - but this is the first veterinary diagnostic lab which is using it for Lyme disease.

Key excerpts from the article:

The improved test for Lyme disease in horses and dogs developed by Wagner and her colleagues takes less time, requires smaller samples, and answers more questions about the disease. In the past, diagnosticians had to run several tests to confirm Lyme disease. The multiplex procedure can detect many kinds of antibodies to several different antigens of B. burgdorferi using a single test on a single sample, eliminating the need for separate tests.

[...] Different kinds of antibodies can be found in the body at different stages of infection. The new test can distinguish and measure these differences, giving more information about the timing of the disease. "We can now not only distinguish between infection and vaccination, but also between early and chronic infection stages,” Wagner noted. “That was not possible before. You were able to say whether an animal was infected, but not when it was infected, or how far the infection had developed.”

The test and information it provides can help veterinarians make advanced decisions about treatment. After the long treatment period ends, veterinarians usually conduct follow-up testing to see if it was successful.

I decided I wanted to learn more about Dr. Wagner and if she did any research - as well as to learn more about bead-based multiplex assays.

I also had one question: Why isn't this test available for people, since many have complained that Lyme disease serological tests are not that accurate?

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5 Admin Update: Health Report

Been away from writing for the blog for a week, other than adding a few blogs and web sites to the right column of this page and responding to a few comments.

Just haven't been feeling my best - though over the past several months, my symptoms have been milder than usual and I was hopeful my last run of antimicrobials did a lot of good.

But last week, something new and annoying: Stabbing pain in my back and side, pain radiating down into my groin, fevers that come and go, and relentless nausea and lightheaded dizzyness from not being able to eat anything. Pain when I urinated, but it wasn't always there.

I was advised to take painkillers, go on a light diet for a few days, and drink a LOT.  And rest. Sleep as much as I could.

Which I have, and not necessarily by choice... I have found myself passed out in the middle of a video game I was playing or something I was trying to read. And at night, I'd be up with pain and not able to sit for long -  I didn't feel up to writing online much.

I'm feeling somewhat better now. I'm supposed to go back for a followup appointment soon. 

In the meantime, I'm hoping I'll write something more here - it just isn't coming together that quickly at the moment.

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5 Admin Update: Sick / Spam Notice

CO is feeling pretty sick today, and hasn't exactly been doing great for the past couple of days. Needs to get doctor's appointment soon - may not be Lyme-related issue but something else requiring attention. Sparing you the details for now.

Feel free to read through archives here and leave comments/questions, but can't guarantee how quickly there will be a response.

General note:

All comments regarding selling of  any service or product etc. will be deleted immediately. This is in response to the recent comment I received from a chiropractic service on one of my posts. Please do not use this blog to sell anything. Thank you.

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1 I've Got You... Under My Skin

There you folks go.

Seriously, if you stopped for just one moment and responded to the naysayer's comments with evidence, then the conversation might be more productive...

Exchange online, identities removed and exact words modified because they aren't necessary to make the point - and besides, one was anonymous, anyway:

Party A: 

"I was not impressed by this movie. It is a rant against Big everything. There's no explanation of what is wrong with the guidelines. I'd like to see LLMDs explain what chronic Lyme disease is, explain which guidelines are in error and why, and then present research which contradicts research cited in the guidelines. I don't expect this will happen any time soon. I don't understand why everyone is so conspiracy theory about this and isn't looking at the problem logically.

Why would Big Pharma not want use of long term antibiotics since it's money making?

Further Comments from (assumed same) Party A:

"The guidelines have research citations. I have no issue with questioning them, it's how better ones are made. But any change must be based on research not anecdote. When someone can define what "persistent Lyme disease is" and use DB RCS with the right methodology and show longer term antibiotic therapy is good then the guidelines will change."

(Remainder of comment scrapped for repeating much of previous comment made above.)

Party B response to Party A:

"Clearly, you are clueless - even after watching the film. If you ever get Lyme disease (chances are high, considering it's an epidemic), you won't like these guidelines so much."

Party C response to Party A:

"You sound just like these two guidelines supporters and authors of guidelines. If you want to know more about it then read. Or better yet get bit by a tick and get sick and see what life is like for a Lyme disease patient."

(Remainder of comment thread removed for brevity.)

Hi, I'm sorry you are suffering. This disease sucks, and I hate it, too.

Unfortunately, this isn't making a strong case in support of the issues we're facing here and providing a well reasoned counterpoint to Party A - whoever they are - is important. (And they could be anyone who is skeptical and wants to know the answers to their questions.)

If you can convince them of the problems patients are facing, then you can convince just about anyone.

I suggest that you read the following links:
http://campother.blogspot.com/2011/05/chart-ways-to-discuss-your-position-in.html
http://campother.blogspot.com/2011/05/repost-lyme-disease-rant-wall-of.html

You can win in an argument - or at least present information which will get others to think, including those observing your exchange who do not comment at all.

Remember that for every comment you write and receive, there are hundreds of people who say nothing and your comment and your post has an effect on them.

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2 Paper: 2006 Lyme Disease Guidelines

Okay. So, let's take a look at these guidelines that so many Lyme disease patients have been talking about.

The 2006 Lyme Disease Guidelines (IDSA) can be found here (full text): http://cid.oxfordjournals.org/content/43/9/1089.full

I'm going to be asking questions and making comments on different sections. Be prepared for some jumping around...

"Late Lyme Disease

Lyme arthritis. 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. 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. 

"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..."

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 β-lactam antibiotic (see the paragraph below) for successful resolution. Further controlled trials are needed to compare the safety and efficacy of oral versus intravenous therapy for Lyme arthritis."

Given what I wrote in a previous post on the 2000 Lyme disease treatment guidelines, this is a continuation of my questioning this line of reasoning:

How do they determine that someone has neuroborreliosis?

What if it's subtle and not overt?

In the 2000 guidelines, they were urging doctors to look for subtle neurologic symptoms.

To continue...

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10 Video: Tick Removal

I've been spending some time today looking for good videos on how to properly remove a tick and also what tools are best to have in your toolkit.

I've seen some really, really bad videos. Some American guy removing a tick from his leg when drunk (no, he did not do a good job) and some Australian guy removing a tick from his abdomen starting with spraying insect spray on the embedded tick.

As a reminder to those reading along: Do NOT spray or ignite ticks with insect spray and/or a flamethrower when removing them, especially while intoxicated on any substance.

Where was I? The videos. Right.

A lot were poorly lit and filmed so far from the bite area that it was out of focus - and others, while well-made with 3D animation of a tick in all of its glory - contained errors or missed important points.

I'm still looking for something better to post here. Until I get my own copy of Pixar studio software and can make my own tick removal animation, these will have to do - unless you're reading along and have found better examples.

Please feel free comment with links to the best tick removal videos you've found online and tell me why you think they are worthwhile. In the meantime, check out the two below, and pass them on to kids and adults alike.

This first one is an animated film from Canada.

It's simple and to the point, and aimed at children - but the advice and information given applies to adults, too.

Tick Talk - The Adventures of a Not-So-Super-Villian [Time: 3:30]



This second one is a short film from a woman in the UK who is close to someone with Lyme disease, and while the prices for items in her tick kit are in quid, her feedback about various tools is useful to hear.

Ticks - Human Survival Kit [Time: 2:23]



I went to many well-known informational Lyme disease web sites and have been surprised they did not have any video - animation or otherwise - showing the procedure for how to remove a tick, though they did provide pictures and instructional text.

As always, keep the following in mind when removing a tick:

• Do not burn or use any substance on tick
• Do not grasp, squeeze, or twist body of tick with tweezers (tick twister is an exception)
• Grasp tick close to the skin with tweezers
• Pull tick straight out
• Use antiseptic on skin
• Disinfect tweezers
• Wash hands thoroughly
• Always see a physician for possible diagnosis, testing, and treatment
• If desired, save tick to be tested at tick testing laboratory

In the United States, here are some well-known tick-testing labs:

IGeneX Labs, Palo Alto, CA: 800-832-3200
MDL, Mt. Laurel, NJ: 877-269-0090
NJ Labs, New Brunswick, NJ: 732-249-0148

If anyone would like to share their experience with getting their tick tested at any of the above labs or another lab, that would be appreciated.

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