Waiting for a cure: Lyme disease auth...

Waiting for a cure: Lyme disease author sees science as salvation

There are 46 comments on the NewsTimes.com story from Jul 8, 2008, titled Waiting for a cure: Lyme disease author sees science as salvation. In it, NewsTimes.com reports that:

In 1993, hoping to raise their two sons away from the mean streets of Queens, author Pamela Weintraub and her husband Mark made a circle on a map with Grand Central Station as the bull's eye.

Join the discussion below, or Read more at NewsTimes.com.

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David Moyer

United States

#1 Jul 8, 2008
Thanks Robert Miller for an objective review of Pam Weintraub's book. However, one of your sources was neither objective or fair.

"It's fine to do studies," he (Shapiro) said. "I'm not saying people shouldn't do them. But it's an unjustifiable and unsubstantiated leap of faith to do them and then say this is how people should be treated for Lyme disease."

However, Shapiro said, making that leap "sells books.'

First of all Weintraub does not offer a treatment based on studies, but rather a carefully reasoned approach demonstrating that both failure to treat and treatment can have untoward consequences. Unfortunately, the former occurs far more often than the latter.

"Yes, some patients do better on antibiotics,'' Shapiro said. "Some do better on placebo. Some do better on IV vitamins.' I do not believe the literature supports the claim that placebo has been effective with chronic Lyme disease. As far as vitamins are concerned, it should not be surprising to know that vitamins and minerals as well as antibiotics can restore health. As I state in my book, "Too Good to be True? Nutrients Quiet the Unquiet Brain," vitamins and minerals can facilitate immune system functioning. They can also mediate oxidative states brought about, in part by responses to chronic infections, of which Lyme is but one example.

When we better understand the connection between infections, nutritional status and mental illness, MS, ALS and other CNS disorders then we will be closer to accurate diagnosis and definitive cure. Dr. Shapiro's comments would have us discount "Cure Unknown" as if the author just wants to "sell books."

David Moyer, LCSW (Alaska)
Sharon H

Bangor, ME

#2 Jul 8, 2008
I would add that it is not the entire IDSA that supports only short-term term treatment. The entire body of the Infectious Diseases Society of America did not vote on their Lyme treatment guidelines. They were the work of a few, and Attorney General Blumenthal found evidence that those few violated anti-trust law and their own society's ethical guidelines.

Many doctors belong to both the IDSA and ILADS. Many IDSA healthcare professionals disagree with the IDSA's Lyme treatment guidelines. Twenty-five years has barely scratched the surface of understanding this disease. Hopefully, it will not take another 25 to conquer it.

United States

#3 Jul 8, 2008
Only people personally touched by this disease can realize its horror.
At this time official approach taking by Dr. Eugene Shapiro and IDSA imposes on people with chronic Lyme disease and co-infections (and their families) cruel/inhumane physical, emotional & financial suffering/punishment.

Schwenksville, PA

#4 Jul 8, 2008
What a breath of fresh air. Research and more research is needed---and less fighting between polarized factions in the Lyme Disease debate. Also essential is a foolproof Lyme Disease test which does not exist yet.
Pamela Weintraub

Brooklyn, NY

#5 Jul 8, 2008
Thanks to Robert Miller for an excellent and very accurate review of my work.

I would like to respond to Dr. Eugene Shapiro of Yale, who has acknowledged that he has never read CURE UNKNOWN, yet nonetheless has found it appropriate to issue a critique –something that as a professional journalist I would personally consider unacceptable. It could be that critiquing a book without reading it is like characterizing a disease without reading and understanding all the relevant science.

Had Dr. Shapiro read my book he would know that, unlike him, I do not issue treatment guidelines or any treatment advice at all. He would know that I interviewed mainstream academic scientists beyond him not to “sell books,” but to learn why the patient experience is so darn different than Lyme according to Shapiro -to learn the nuances and complexities from experts who work with the organism.

In six years of interviewing many of the top scientists in the world studying Lyme and associated diseases at major university-based laboratories, I did indeed gain another perspective. One thing I learned, for sure, in all my interviews is that Shapiro and the rest of his IDSA group represent the extreme right wing of mainstream thought, despite the fact that the CDC sometimes (and by the way, not always) defers to them. The truth is that most scientists who work with the organism hands-on across the range of species actually do not see things the IDSA way, and do not agree with Shapiro. Anyone who says that findings in rhesus **** are irrelevant to the human model leaves me speechless. This is not a scientific stance: ESPECIALLY not when so many patients remain so sick and no one has answers for them.

Finally, instead of responding broadly or politically to things not written in my book, I wish Dr. Shapiro would actually read the book and respond specifically to the points that I DO make: For instance, can he explain why the studies he cites make no effort to differentiate between the many borrelia strains, some of which cause severe entrenched disease and others of which cause only a rash and don't even disseminate? If he counts all strains as equal in his studies, how can he know when his treatments are working, or to what degree? This is just one question of many posed NOT by me but by the mainstream academic scientists other than him that I interview in my book.

Perhaps Dr. Shapiro has no use for them or their research because they defy his own beliefs, the cornerstone of a flat Earth system where no new data can ever enter the field. In that sense, he flies in the face of the definition of true science put forth by the greats like Richard Feynman, who said: the true scientist will always shift the paradigm to fit the data, whatever that data might be. Should the data not fit the confines of the theory, then the true scientist must keep the data and concede that the theory is flawed. Not IDSA: Instead, they chuck data beyond their paradigm and keep their theories unchanged.

We are dealing with a series of intersecting emerging infectious diseases in a shifting climate and ecosystem: Lyme and other spirochetes, babesia, anaplasma, and according to scientists in the best position to know, that is, the world's top experts on such matters, unidentified microorganisms as well. We have a complex, nuanced situation and so much to learn. To the scientist who says his data is i"ncontrovertible," that he knows it all, that no mysteries remain, well, in all my decades as a science journalist for national media, I have NEVER heard a true scientist say anything like that.

Pamela Weintraub
Senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic

Lake Worth, FL

#6 Jul 8, 2008
Pam is better "prepared" to talk about Lyme Disease than any regular infectious disease specialist, neurologist,etc.

Pam you are the best and thanks for writing this book.

Lorraine Johnson

Santa Ana, CA

#7 Jul 8, 2008
Shapiro is entitled to his own views. The problem arises when he uses his views to suppress treatment options for patients. People who believe they have "incontrovertible evidence" foreclose scientific inquiry because they know the answers in advance of the studies. The fact is that the studies that have been done on the treatment of Lyme disease are limited--the sample sizes were quite small--the results, far from being unequivocal, supported treatment in some cases and did not in others--and, most importantly the sample population did not reflect the patients that physicians treat clinically.

Whether you agree or disagree with Shapiro, the treatment of Lyme disease is just another area of medical uncertainty (like cancer) and the treatment decision should not be his to make. Treatment choices should be made by the patient in consultation with the treating physician. When guidelines, like those of the IDSA, foreclose treatment options, they take away the ability of the physician to treat the individual patient—a patient who may have been responsive to treatment in the past, a patient whose quality of life may be significantly impaired without treatment.

If “some patients get better”, then the goal of Shapiro and his colleagues at the Infectious Diseases Society of America should be to provide that treatment to patients, who he concedes are ill. It will take a lot more science by open minded researchers before we know why some patients respond to a particular treatment, while others don’t. Depriving patients of the only viable treatment option is both inhumane and reprehensible. Not all cancer patients are cured by treatment, yet in a civilized society the concept of withholding care that may be beneficial is not acceptable.
Ellen Lubarsky

New York, NY

#8 Jul 8, 2008
Thank you for this article about Pam Weintraub's excellent book on Lyme disease.

Unfortunately, I wasn't able to finish reading the article. After reading Eugene Shapiro's quote, I had to stop and try to bring down my blood pressure.

This person who has dedicated his career to limiting scientific inquiry, who has actively worked to limit medical treatment to suffering children, who has sought to destroy the career of the only physician who has helped these children and who has been found guilty by the Attorney General of Connecticut of having significant FINANCIAL CONFLICTS OF INTEREST which made it necessary for a totally new panel to be convened to review the guidelines he participated in writing, this person has the gall to snidely accuse a patient who has written such a masterful investigation into the total of Lyme research of doing it for the money.

It is very hard to understand why Shapiro, or any of the physicians who were involved in the now discredited panel of writing guidelines for Lyme disease, should be interviewed for any newspaper articles about Lyme disease. You would think that being found with considerable, undisclosed financial conflicts of interest would be a reason for a doctor to lie low for a while, rather than continue making smug comments to discredit people who have suffered from chronic Lyme and are trying to find help for others who are suffering.
Daniel Kinderlehrer MD

Denver, CO

#9 Jul 8, 2008
I consider Pam Weintraub's book a masterful piece of scientific journalism. I speak as a physician who has personally suffered the ravages of Lyme and its co-infections, who has witnessed a daughter also chronically ill with Lyme, and who has treated hundreds of patients with late-stage Lyme disease. A decade ago, these patients came into my office after having seen at least a dozen physicians including an infectious disease specialist, and asking if they have Chronic Fatigue Syndrome. They were told, "There is no such thing as Chronic Fatigue Syndrome, see a psychiatrist or go on antidepressants." Now, these same patients see the same doctors, but ask if they suffer from Chronic Lyme. The answer? "There is no such thing as Chronic Lyme, you have Chronic Fatigue Syndrome."
As one infectious disease specialist confided to me, "I have never before witnessed in medicine so few people having so much influence and being so wrong." Dr. Shapiro's attitude would be laughable if he and his cohorts did not have so much influence on how doctors diagnose and treat Lyme, and how insurance companies (like ones that Dr. Shapiro consults for) reimburse. The result has been tremendous suffering for people, many of whom would have a chance to respond to appropriate treatment.
As Pam Weintraub points out, Shapiro et.al. are not following the science. They have not acknowledged the dozens of studies that demonstrate persistence of infection even after aggressive antibiotic treatment in both animals and humans--they simply ignore the data that does not support their paradigm; they have made unreasonable conclusions from limited, poorly designed studies on which to base their dogma that Chronic Lyme does not exist; and they dictate that doctors not abiding by their guidelines are not ethical or practicing good medicine, regardless of beneficial outcomes on the same patients that they refuse to treat.
Thank you to Pam Weintraub for shedding light on this complex illness.
Trent MD

Cape Coral, FL

#10 Jul 8, 2008
The polemical physician, Shapiro, the master of filtered "science," eagerly critiques a book that was not read--an F in a High School English class. Yet he speaks?! He speaks of a book he has never read! What fantastic unbridled bizarre arrogance fitting a pre-teen. Simply, he embraces a "guideline" of clone treatments ("10-21 days"). He shows no real knowledge of Babesia, Bartonella, Lyme biotoxins or Bartonella immune suppression. Why? This IDSA guide writer is part of an inner cult. Has he cured thousands of real tick disease patients untreated for years? Hardly. He confuses stun dosing with cure dosing--patients are not robots needing 5 quarts of oil each. His simple approach does not appreciate the Lyme biotoxins, such as the patented BbTox1, or possible biofilms like the spirochetes making plaque in your mouth, or the explosion of Bartonella that harms the body 300 ways in peer reviewed journals. Where are his educational texts on other common deer tick infections like Babesia, untreated advanced Lyme or Bartonella? The latters profound immune suppression undermines Lyme treatment and is often found in deer ticks, fleas, etc... Does this IDSA polemicist know that Bartonella has 32 species? I doubt it. This is not in print yet. Many of the most serious advances in tick-borne infection medicine are slow to print. And his "old boys club" has them locked out, and they have even prevented open-minded members from being on the IDSA Lyme guideline committee. IDSA Lyme writers know full well the 10-21 day silly cure will be embraced by insurance companies whose motives are clear, e.g., toss out women with recently delivered babies in 24 hours. 10-21 day treatment of Lyme ignores common co-infections and is appealing, easy and fits with rushed medical evaluations. It is so easy that it is comical but actually is markedly sadistic. And placing it in print has been used to destroy anyone outside the lines. This is medical fascism. This is journal article burning. We have seen this anti-intellectual exclusivist over and over again with stomach ulcers and HIV. Thankfully Cure Unknown by the Senior Editor of Discover and the highly acclaimed award winning documentary Under Our Skin spot his simplistic madness. The Connecticut attorney general has destroyed all credibility in IDSA.http://www.ct.gov/ag/cwp/ view.asp?a=2795&q=414284 TERSE SUMMARY. Reading shows this small group is ignoring real science and vast available studies. Science includes sociological self-awareness. I do not see any self awareness in these IDSA guideline authors and quite the opposite in the extreme. They make a great argument for a solid liberal arts education and the study of meta-beliefs and the troubles with modern epistemology.
BettyG in Iowa

Mooresburg, TN

#11 Jul 8, 2008
To all who post here, please think of us NEURO CHRONIC lyme patients,

and please have SHORT paragraphs of 2-3 sentences max UNLESS it is something very technical.

then 1 sentence is a paragraph. we'd like to be able to read and follow the comments.

pam, i look forward to reading your book in near future; i've been reading rave reviews about it. it complements UNDER MY SKIN beautifully.

It was a good article, but I'm so tired of reading the MISINFORMED Shapiro quotes from a man who claims he treats lyme patients, and appears to be 1 of the 06 IDSA lyme guidelines panel who was involved "CONFLICTS OF INTEREST".

BUT he does NOT believe in chronic lyme; treats for 3 weeks and under .... UNDERTREATING a lyme patient so they then become a CHRONIC LYME patient for years or decades!

I've had CHRONIC lyme 38.5 years; 34 years MISDIAGNOSED by 40-50 drs/specialists.

My entire body has been effected and especially my cognitive skills, lungs, heart, and kidneys all showing something wrong with them.

I was angry with ALL drs. who had seen me for 34 years, and who had NOT figured out the correct diagnosis since lyme mimics 300 OTHER illnesses/diseases!

To all reading this, I encourage you to talk to your public libraries in each city about buying Pam's new book which covers so many areas.

Also, for your libraries to buy the DVD, UNDER MY SKIN, from www.undermyskin.com web site!

Then they can also have TICK/LYME/CO-INFECTION AWARENESS movie showings!

BettyG, Iowa lyme activist

Vancouver, WA

#12 Jul 8, 2008
Eugene Shapiros comments, seemingly made in an apparent defense of the highly controversial IDSA Lyme disease guidelines, are a puzzlement. While many of the IDSA authors have serious conflicts of interest, according to disclosures made to the British Medical Journal, Shapiro only has a couple.Dr. Eugene Shapiro reports having served as an expert witness in medical malpractice cases related to Lyme disease. He has reviewed claims of disability related to Lyme disease for Metropolitan Life Insurance Company. Most people know that Shapiro is currently engaged as an expert in the investigation of a distinguished physician who has without a doubt helped more pediatric patients than any other physician in the world. Perhaps there are other conflicts Shapiro has not disclosed?

With regard to the IDSA Lyme guidelines Shapiro so fervently defends by ignoring or insulting leading research by credible institutions here and around the world, this closed-minded attitude was instrumental to the formulation of the guidelines.

IDSA claims 405 references in their Lyme disease guidelines. They fail to point out that only 337 of these relate to Lyme disease, or only 4% of the more than 7500 references available on PubMed at the time. Of the 337 references, 172 references or 51% were self-referrals written by the guideline authors themselves. If one subtracts the 127 references that do not appear to be relevant or only remotely relevant to the topic at hand, the IDSA self-reference figure becomes even more biased and distorted. In one section relating to treatment guidelines for people with erythema migrans and other clinical manifestations of Lyme disease, only 11 references were cited, 9 (including one associate)of these references, or over 80%, were authored by the IDSA authors themselves. Yet, this is the crux of the IDSA treatment guidelines.

I will not even go into the NIH research grants awarded to these IDSA authors. Except perhaps to mention that Allen Steere, the discoverer of Lyme disease, has been awarded 33 grants over I believe as many years with the title Lyme Arthritis A New Epidemic Disease. His latest string of NIH grants have the titles Evaluation Of Epidemic Arthritis In The Lyme Area and Natural History Of Lyme Arthritis. Apparently, even Steere cant figure things out. And I guess management at the NIH is a little slow in cognitive abilities.

What is Shapiro so afraid of that he feels he has to make such derogatory, closed-minded and unfounded comments stated in this article?

A very fine article by Robert Miller and a great book by Pamela Weintraub. Much needed and much thanks.
T ****

South San Francisco, CA

#13 Jul 9, 2008
Thanks to Pam Weintraub for a timely and thoughtful dissection of the Lyme disease epidemic, and thanks to Eugene Shapiro for reminding us that the earth is flat. Shapiro is an architect of the IDSA Lyme treatment guidelines that were designed to keep us from falling off the edge. With such good intentions, it's hard to understand why the Connecticut Attorney General is so mad at him (you can find out at http://www.ct.gov/ag/cwp/view.asp... ). On the other hand, given Shapiro's medieval thinking it is shameful that an allegedly enlightened institution like Yale University supports him.
Bb Brain


#14 Jul 9, 2008
Two simple questions: Why was Dr. Shapiro asked to comment on a book he hasn't even read? And then, why did he?

I think the answers speak for themselves, and they tell us a lot about the Great Minds in Lyme Disease who make up the famed braintrust at IDSA.

Keep on talking, Dr. Shapiro. You simply reflect the mindset at IDSA--a truly choice collection of expert know-it-alls and know-nothings.

Fayetteville, NC

#15 Jul 9, 2008
Thank you for an exceptional review of an exceptional book, both of which I enjoyed reading.
I have grave concerns about Dr. Shapiro's comments:
" It's fine to do studies," he (Shapiro) said. But it's an unjustifiable and unsubstantiated leap of faith to do them and then say this is how people should be treated for Lyme disease.''
I believe that is how IDSA developed their current national guidelines that are even infiltrating other countries? With just a few studies that have design weaknesses in the experimental group? And with those few studies, they developed guidelines.
And these treatment guidelines, in Dr. Shapiro's own words "usually" work, and help "most" people.
That means they do not work some of the time. To find out how the treatment failures occur, one needs to study the organism in all its manifestations, from variable DNA, to variable environment, to variable eco-systems, to variable forms within the host, to various antibiotics.
No one has done research on treatment of borrelia infections from different geographic areas within the U.S., such as MidWest or West Coast, or Southern, species of ticks which carry different types of borrelia, and of those borrelia within the sensu strictu, that have different osp, and different DNA.
Research also is needed to explain why the practice of extended treatment beyond IDSA guidelines, is working for so many people, as seen in the successful results of ILADS medical doctors in the documentary "Under Our Skin". No placebo or vitamin eliminates myoclonus or paralysis induced by tick borne diseases.
As long as there are questions, with no answers, one needs research.
This wonderful book sells because it is scientific, rational, and well researched, with no stone unturned, including history of testing, changing disease definition, questionable research and definition methodology, and current complexities of the organism itself.
The book and current research, have no definitive answer for those who are not helped by IDSA guidelines. The author points in the direction of potentially fruitful research,which is disparaged in the above quote, by a national researcher, named Dr. Shapiro. When hubris impedes research, science will be stagnant.
The book is living proof of how much work is yet to be done in the study of tick borne diseases, including questions such as why very long term antibiotics, other than rocephin, actually are working.
Dr Kevorkian

Arlington, VT

#16 Jul 9, 2008
Time is "Tick"-ing away on this.

Bowmansdale, PA

#17 Jul 9, 2008
An excellent article about an excellent book, and knockout comments. The only thing I can add at this point is the question: Why does Yale continue to employ Eugene Shapiro? He is an embarrassment to that institution. One could also ask the same question about Dr. Wormser, Dr. Steere, and others. These institutions are the ones who are enabling a few criminally incompetent people to dominate and skew lyme treatment.

And doesn't the IDSA realize that in continuing to defend the horribly flawed and dishonest lyme guidelines, that the rest of their medical positions will be thrown into doubt? If I were an honest and competent infectious diseases doctor, I would certainly be protesting their stance, because it reflects badly on the membership too.
Randy Sykes

Milldale, CT

#18 Jul 9, 2008
Per Shapiro--***What happens to
Borrelia spirochetes in a petri dish, or in a study with mice or ****
won't change that.***

www.lymecryme.com is just full of these papers that show treatment failure and inaccurate testing.
Dr. Shapiro how do you prove lyme disease is cured in 14 to 21 days when your friends from the IDSA show that the testing is missing 85% of the cases. For the $20,000 reward on treatment go to www.ctlymedisease.org
You have no scientific data to back up what you are saying.
Nelly Pointis France

Verrires-le-buisson, France

#19 Jul 9, 2008
14 to 28 days of treatment has been arbitrarily declared "adequate" by the group of Lyme "Experts" Dr Shapiro belongs to, so anybody who has received this "adequate" amount of treatment is declared cured, regardless of on-going or worsening symptoms, by definition.
Simple reasoning for simple minds who won't let themselves become bothered by circular reasoning... or by data.
Stella Marie

Loganville, GA

#20 Jul 9, 2008
How can one review a book he has never read?

Makes me wonder about Shaprio's body of lab work and studies....hummm

Thank you Mr. Miller for a great review of Pam's book on this weighty matter.

And a big thanks to Pam for taking the time to write this astute and much needed book!

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