Excellent analysis.

When I first became mired in the lyme quagmire, I wondered why this disease was being handled this way. It seemed clear that someone was trying to disappear it. And the govt health agencies seemed to be responsible, and enforcing their views by their huge grant making power. There are few large medical research institutions that are not dependent on very large sums of money coming from NIH in the form of grants. Johns Hopkins, Harvard and others are given hundreds of millions of dollars each year.

But why would be govt behave this toward one disease entity? Looking around, though, it is not just one disease. AIDS is infamous for the way it was handled in the early days. Look at autism and attention deficit now and you will see the govt dragging their feet. There are still papers being published in medical journals that make people with fibromyalgia and chronic fatigue look like nut cases.

I hope to live long enough to see modern medicine deserve that name. But if the IDSA and the govt has their way, it won't come in my lifetime.

How is that medicine has had centuries of experience with another spirochetal disease, syphilis, but is so pathethically inadequate when it comes to lyme? Do we learn nothing from the past?

Thank you for your thoughtful analysis, and for the new information you've obtained in interviews with researchers. It provides new hope for the future. Yes, the IDSA guidelines disenfranchise thousands of patients from medical care - a fact also known to the Chairman and members of that committee. It is shocking that they would choose to do harm to so many by depriving them of care while pursuing their financial interests in the diseases. We need health care reform to expand access to health care to the underserved, but we also need reform within medicine, so that individuals such as those on the IDSA committee do not get away with their antisocial behaviors. The Bayh-Dole Act was passed with the hope that it would foster greater commercialization of interventions discovered with federal dollars. However, Congress did not attach any provisions that would govern abuses of the Act --- abuses at the university or small business level, or abuses by researchers themselves.

Wormser et al have been informed about the problems with the guidelines, and equally have access to the science that you have described. Yet, they remain unmoved. This is unethical. Primum non nocere ("first do no harm") - a basic tenet of medicine.

And not only did IDSA defend its members, fighting hard against Blumenthal's investigation, it is reported that IDSA hired a Washington DC legal powerhouse -- the law firm of Hogan & Hartson -- to defend them in the investigation, promoting the status quo of the Lyme disease guidelines. This is unconsionable.

We have problems in medicine similar to the problems on Wall Street --- the absence of regulation that would protect the public from abuses by those who do no respect reasonable limits.

Personally, I was glad to see Daschle withdraw from the nomination as
"health czar." A person of the Beltway, he accepted large sums from health care interests, and his wife is an aviation lobbyist. This is not the person we need to clean up health care.

Given that IDSA and its lawyers have stacked the deck against Lyme disease patients, I am not hopeful we will see a determination from these panelists that the guidelines need to be revisited. Even in the face of evidence to the contrary. May I be proven wrong.

It is so outraging to me as to how in the world they can come up with such absolutly rediculas, false conclusions that Lyme can be cured in 28 days!!!!!! And the fact that there are strains that will give you and rash but not make you ill!!! Oh my word, I'm so angry that I don't even know what to say or do!!!!

It has been 18 years ago that I was bitten by a tick and had a small rash at my hair line. I also had a rash on the soles of my feet the migrating up my lower leg, and rash on the palms of my hands. I had flu like sx, fever, extreme swollen joints to the point that I couldn't even open a jar or a simple soda can, and severe musle pain!

My CASE WAS SO CLASSIC; IT WAS COMPLETELY A TEXT BOOK CASE and because my test was negative, I am now almost completely disabled!!! I was dx with Lupus, oh so familer isn't it! My Dr. did treat me with 10 days of Doxy only because I was so sick for a long time. She also treated me with 7 days of Rocephin as she suspected infectious artheritis. I was blessed to have a Dr. like that; yet still I was misdiagnosed!

Now because of this, this disease has taken my life. I have permanent brain, heart, liver and kidney damage. My LLMD is doing the best he can to help me at least gain some independance and reduce the deep infection in the Basil Ganglia.

The Dr.'s on the panel state there is no proof of Chroic Lyme, that it can be transmitted to your child through the placenta, and that it can be sexually transmitted!!! Yet, my son is 14 years old and has Lyme and Babesia; he has been symptomatic since he was born! My husband not has it and according the his WB which is CDC +, he was infected with-in the last 6 months.

There are documented studies by top Univercities, much research has confirmed this and have published the findings in the American Journal of Medicine. WHY---WHY are these findings NOT included in their studies and conclustions to guidlines!!!????

My whole family is sero-positive even after the treatment I recieved when first infected. I have the blood work to proove that I am still infected and it is CHRONIC!!

Why don't they do a study with patients like me and my family??? My story is all to commen as so many are just like us; yet the IDSA knows about the hundreds of thousands of cases like this, but CHOOSES TO DISMISS THE EVIDENCE!

This is a crime that should be fought by everyone!

Pam, thank you so much for doing all you do and doing the research and reporting your findings!!!! God bless you!!

How can we fight this??? There must be a way???

Again Thank you,

Janet

Your entreaty to look towards the science is badly needed, and very apt.

Even at the most basic level of science, the so-called "persistent infection" theory wins due to simplicity. Occam's Razor is the preference for simplicity. Therefore even with no evidence the Persistent Infection theories wins, unless there is a mountain of evidence for the alternative.

The fact is that there is plenty of evidence for persistence while there is no evidence for post Lyme syndrome.

Let's move along now...

Well, look this over and get back to me. I have been sick since 1991. Im in late stage and after spending our life saveings, and the money from selling our tour bus to a Lyme Dr. I only got worse. Now it seems that ABX's do us no good at all. Its all in this link. So far the only good thing that came out of sitting here day after day to weak to work any more is Dar's Toy Story. A piece I did almost 2 yrs. ago. Its gotten to a lot of people by Googleing it. almost 6 million times so far.

http://www.publichealthalert.org./pdf/2008_11.pdf

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=0175...

The first link is so alarming, and scarry for us suffers. The 2nd one is a link to my story. After much resurch im doughting thAre is much hope. I only get worse off each year. Our Ins. covers nothing. Were now broak, liveing day to day till the end comes. You cant fight a goverment that has it all set up for them to denie us any help. Knock all you want to, the door is locked..........! Tex

Thank you for this thoughtful article. We must get the ISDA guidelines changed or we have no hope to get the GP doctors educated, and they are the first doctor a lyme sufferer will most likely turn to for help. If the "experts" are telling them the wrong treatment guidelines so many people are going to go untreated or undertreated. It is tragic what lyme disease can do to a person and you cannot even begin to understand until it affects you or a loved one.
Thank you for your work, it is so important.

Oh, I must have Lyme! I forgot to mention in my earlier comment that I absolutely LOVED your choice of title for this piece --- "disappearing a disease!!" So apropros. I can see Dr. Wormser in his magician's cape and white gloves ---- POOF!!! Scientific problem, gone!! How much do you suppose the pharmaceutical companies pay him for that clever trick!!

And Wormser, he's not a real doctor. He's a magician. Tells me that at whatever age, it's never too late for a career change.

Breaking this up for all of us NEURO lyme folks who can NOT read or comprehend long, solid blocks of text! BettyG

Disappearing a disease: when guidelines are biased, patients suffer

By Pamela Weintraub

on February 05, 2009 in Emerging Diseases

It was in October 2006, that the Infectious Diseases Society of America (IDSA) published its updated Clinical Practice Guidelines for Lyme disease.

The document dismissed, out of hand, one side of an argument over Lyme that had been waged in the medical community for 30 years:

Whether, after antibiotic treatment of 28 days, the sickest patients were cured or needed more treatment to get well.

Instead of acknowledging the debate --or considering scientific evidence on either side of the issue-- the guidelines deferred to flawed studies supporting only one point of view.

Without sufficient evidence, IDSA asserted that the debate had been settled, absolutely.

In one fell swoop, these guidelines limited treatment and locked some of the sickest patients out of the Lyme diagnosis at all.

Drawing a line in the sand between the textbook definition written when the disease was first described and the many patients now falling outside that classic paradigm, IDSA imposed a Lyme formula so narrow it excluded large numbers of the ill.

While patients with grossly swollen knees and positive tests fell within the diagnostic circle, patients with more subjective symptoms of fatigue, confusion, memory loss and pain were cast out of the Lyme fold, even if they passed the controversial, restrictive test --

a Western blot viewed as crude compared to the technologies of genomics and proteomics coming online today.

The narrow strictures and primitive testing meant that at any stage of illness, many patients could be missed.

It wasn’t much of an issue, said the authors, because late-stage Lyme was rarely seen but was virtually always cured, usually with simple doxycycline, in twenty-eight days.

Outraged, Richard Blumenthal, the attorney general of Connecticut, launched an antitrust investigation into IDSA and its guidelines based on its exclusion of other points of view.

The authors were also stakeholders and had too much to gain by maintaining the status quo, Blumenthal felt—from stature in their professions to the payoff from patents to the constant flow of grants.

He found the conflicts of the IDSA authors to be profound:

They consulted for big pharma and owned Lyme-related patents;

they received fees as expert witnesses in medical-malpractice, civil, and criminal cases related to Lyme disease;

and they were paid by insurance companies to field—and help reject—Lyme-related claims.

Of the fourteen authors, nine received money from vaccine manufacturers and four were funded to create test kits: products that would be more likely to reap profit if the definition of Lyme disease remained essentially unchanged.

“These guidelines were set by a panel that essentially locked out competing points of view.

Presumably, the IDSA is a nonprofit-making organization, but such organizations can still be used for anticompetitive purposes,” said Blumenthal. “This is not theoretical. It will come down to dollars and cents.”

IDSA, of course, denied it had any conflict, insisting its doctors could hardly profit from the cheap, short-term antibiotics they prescribed.

The disingenuous disclaimer ignored the fact that IDSA panel members were profiting, and mightily, not from writing prescriptions, but from rivers of grant money flowing through their labs to develop the vaccines, test kits, and companies their restrictive definition allowed.

IDSA insisted MORE grant money would flow were they to concede the patients were sicker, and that is true --but probably not to the stakeholders there today.

Last year IDSA and Blumenthal struck an agreement --the Lyme Guidelines panel would be reconstituted, and those with conflicts would be barred.

But the new panel, announced this month, is troubling as well, particularly because not a single member treats chronic patients --

those who, for whatever reason, remain sick after the short-term treatment is done.

While treatment guidelines constitute a concensus of opinions, these guidelines will be written by those whose opinon involves little contact with the sickest patients themselves.

The panel has been reconstituted, but patient groups don't have much faith it will expand its vision or open its mind.

Already an effort to prosecute treating doctors has been pursued in Connecticut.

The rubber stamping of the narrow old guidelines is anticipated far and wide.

Yet as the new group gathers, I'd like to make a plea:

This time examine, really analyze, the science.

New research published in major journals from the Proceedings of the National Academy of Sciences to Emerging Infectious Diseases challenges the current panel conclusions. Do not turn a blind eye.

Important new work from the CDC challenges the current IDSA stance on prophylaxis, which insists a single dose of doxy will prevent infection at all.

CDC immunologist Nord Zeidner has examined this work and found the statistics flawed and results skewed. As few as 20 percent of cases may be prevented in this fashion, CDC has found --not the 85% IDSA claims.

And then there is the work from professor Stephen Barthold at the University of California at Davis --solid, irrefutable on its face.

Barthold is one of the most rigorous pure scientists you can ever hope to meet.

He and his Davis colleagues have found that when treated too late or too little, Lyme becomes chronic, with low levels of spirochetes embedded in tissue like collagen, dormant and resistant to drugs.

What are the cytokine and chemokine cascades downstream of these infections?

Can low levels of these immune molecules caused by dormant spirochetes account for the constitutional complaints of chronic disease?

Do antibiotics suppress these immune cascades by keeping spirochete levels low?

Might we find treatments to erradicate the remaining bugs?

Perhaps most important, is the new work on strains out of such prestigious institutions as SUNY Stony Brook, University of California at Berkeley, and University of California at Irvine.

There are 300 strains of the Lyme spirochete worldwide, 100 in the US. Most important here is the issue of invasive disease.

Of 20 strains most prevalent on the East Coast and studied at Stony Brook, just 4 were found to cause invasive disease and 10 were found to cause just a rash --they could not spread beyond the skin.

The implications are profound. One of the most important is that if just 4 strains of the 20 cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present --and held as high evidence by IDSA-- would have to be reassessed.

Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot.

Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a “cure.”

Are recommended treatment protocols truly curing most of those with early, invasive borreliosis, as IDSA contends?

Or has noise from rash only strains obscured less rosy results?

The new panel should consider this:

The answer won’t be found in the twentieth-century technology of the Western blot, by today’s standards crude yet still trotted out by IDSA as evidence absolute that they are right.

(The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous "band" patterns more accurate than the one in use today.)

Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme.

With evidence of this calibre we won't have to fight over the truth: We will know what's going on.

“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of.

But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers,” he adds.

This kind of approach would take the blinders off Lyme disease research, reversing the funneling of thought that has gone on for decades. “I don’t want to be critical about the past, but more is possible now,” Luft says of Lyme’s old guard.

In defending its turf, this old guard has continually pitched its science against the anecdotal stories of very sick patients, as if the seeming sharpness of one and the desperate fuzziness of the other proves they are right. This is a cop-out.

The original IDSA panelists must stop comparing their neat but porous studies to the travails of some embattled Lyme doctor, and must instead be made to hold their work up to that of other scientists.

The new panelists will have to hold them to this second standard if they are going to do the job.

As someone who has traveled the country for six years interviewing these scientists to write my book, Cure Unknown: Inside the Lyme Epidemic, I can tell you unequivocally that many of the top researchers at the top institutions in the world do not think the original IDSA panel got it right.

"We may be looking at a new paradigm for infectious disease," I was recently told by Alan Barbour, director of the Pacific-Southwest Regional Center of Excellence for Biodefense and Emerging Infectious Disease at UC Irvine and one of the top Lyme scientists in the world. He is not alone.

In the spectrum of scientific opinion on these issues --not among other infectious disease doctors, who have simply followed their lead, but among true bench researchers who actually study the organism-- the old panel represents an extreme right wing of thought.

It behooves the new panel to go beyond the work of the old panel in their examination of the science, I just don't know if they will.

We must move on --but will the new Guidelines panel help?

Given the history of the Lyme struggle and the politics at IDSA, the odds seem low.

In the State of Connecticut, where Lyme disease was first widely studied in populations, a hearing is underway.

It pits the two sides:

Those who want to rubber stamp the current IDSA guidelines versus those who want protection for doctors defying them when patients stay sick;

those who say we know all there is to know about Lyme disease right now versus those who say that only further research will light the way and help patients get well. The fight goes on.

But while you can skew the evidence in your guidelines, you can't stop the march of science.

You can try to disappear a disease --but in the face of a burgeoning epidemic with ever more people sick, would you really want to succeed?

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

*********

Well done Pam! You touched on so many important points, and I am appauled at the new panel of 14 people with NO LLMDS, LYME LITERATE MDS, who treat us CHRONIC DISEASE!!

Also, they added the stipulation of $10,000 after the 1st publication of the criteria; now not one dr. can earn more than $10,000 for treating any lyme patients.

That excluded those treating 1 lyme patient per week in 1 year!! HOG WASH!

Pam, thanks again for your thought provoking article, and I continue looking forward to each one you search out and EXPOSE for what it is! HOG WASH!

BettyG, Iowa lyme activist

Great Article!! This really needs to be brought to the attention of the IDSA AGAIN! It's not going to go away more and more people are going to get this disease and they will suffer unnecessary. It's time to stop the madness!!!

Bravo Pam on another fine article. You are the voice to thousands that are too ill to speak up, and it is appreciated far more than you could ever know.

I contracted Lyme four years ago at the age of 25. I had a wonderful career, I was newly married and the possibilities for my life seemed endless.

This disease stopped me in my tracks. It would take two years and many, many doctors before I finally found the cause of my suffering.

I'm eternally grateful for my diagnosis, but by the time I recieved it my life was changed forever and the disease was disseminated and chronic.

What the IDSA is doing is criminal and so many people are suffering needlessly because of it. That being said, sooner or later everybody's bill comes due. One day the voice of science will be heard loud and clear and it will be because of people like you.

Once again - Thanks!

Lauren

We criticize IDSA, and rightly so, for using their own flawed studies as evidence.

And yet we do worse; we make claims for which there is NO evidence:

"There are 300 strains of the Lyme spirochete worldwide, 100 in the US."

Every time we do that we look like ninnies and IDSA just laughs, and rightly so.

Excllent article, Pam. Thank you.

I just talked to a person whose doctor after agreeing to treat a child
backed off after talking to an Infectious Diseases Specialist, saying he felt if he treated the child, his license would be in danger.

Sadly, this is not an atypical story. I wish I could understand the cruelty behind the politics here. Ethics have flown out the window!

Ann

Thank you for this article. Thank you for representing the patient's voice. Thank you!

I have chronic lyme. I went off abx after 6 months and relapsed. This is real and we need our medication.
We have enough anguish with lyme disease without the ignorance.
Look at the evidence. It is solid.
Thanks to all trying to help.

This was a very eye opening article in that What Pam touches upon is so very true.

We can't stop the evolution of science. Science will continue to advance. We will get to the bottom of this debilitating disease.

The IDSA is making a huge mistake by trying to put together a "new" old panel that is not including the very doctors who have spent the last 30 years treating Chronic Patients. The doctors that should be on the panel are the LLMD's "Lyme Literate Medical Doctors".

Does the IDSA really believe that in the end, that the science will support their skewed opinion that Lyme Disease does not exist after a short course of antibiotic treatment????

Do they really believe that there is no such thing as Chronic Lyme?

Tell that to the thousands if not millions of humans that are living proof that 14 to 28 days of Doxy did not cut it. Tell that to the patients who live day in and day out with symptoms that migrate from organ to organ.

There are many scientists that are onto the truth behind what is causing this epedemic and it seems ironic that many of the original croonies that supported the IDSA years ago still are.

Smart is the man that acknowledgeds the errors of his way. I suppose it must be a prideful person that allows his or her ego to continuously get in the way. But, in the end the science always comes out. Stay tuned!

Belle Grant

PS Thank goodness that people like Pam Weintraub and Ben Luft are there for us. I don't know Pam or Ben, but can feel it in the pit of my soul that they and people like them will be the new gatekeepers to our disease. Thank God

If you have not read Pam Weintraub's "Disappearing a disease: when guidelines are biased, patients suffer" I suggest you take a breath and head over to her blog on Psychology Today. Pam Weintraub is the author of "Cure Unknown: Inside the Lyme Epidemic", the seminal book on the politics and science underlying Lyme disease.

I recall telling a friend and attorney who simply did not understand why there should be a controversy when so many people were ill--why would any physician, those men in the white coats, deliberately leave patients ill, untreated, and without hope. Since when did medicine become a science of closed doors, double locked against the needs of patients? I told him "We're not in Kansas anymore, Toto".

Medicine has taken a sharp left turn as researchers, insurers and other vested interests grabbed for their share of the pie. In the economic equation, patients truly are all but invisible. Unless strong pharmaceutical interests push for treatment, the interests of insurers prevail. In Lyme disease, the pharmaceutical have an interest, but it is not in treating. The real monied market in Lyme disease is in vaccines and the research interests funded are for vaccines. Little wonder then that the researchers who are experts in this arena have little interest in patient needs. Vaccines are about the much larger pre-patient market.

Weintraub makes a passionate plea for those on the panel to listen to the steady heart beat of true science, leave the past behind, and move toward the future:

"The panel has been reconstituted, but patient groups don't have much faith it will expand its vision or open its mind. Already an effort to prosecute treating doctors has been pursued in Connecticut. The rubber stamping of the narrow old guidelines is anticipated far and wide.

Yet as the new panel gathers, I'd like to make a plea: This time examine, really analyze, the science. New research published in major journals from the Proceedings of the National Academy of Sciences to Emerging Infectious Diseases challenges the current panel conclusions. Do not turn a blind eye."

Is the new panel up to the task? Can they ignore the dogma of the past? Bias has no place in medicine. In truth, the IDSA guidelines are more opinion than science, with 39 of 72 (54%) of their recommendations based on the lowest level of evidence--opinion. A number of the panel members are known to have walked in the door with a predisposition towards denying patient treatment options, others are known to have strong IDSA affiliations. One can only hope that patient care does not get relegated to the back seat in deliberations and that recommendations are based on science, not beliefs.

By the way, Weintraub's blog is good reading any day of the week--with a firm eye on the science and a skeptical eye on the politics.

http://www.lymedisease.org/news/lymepolicywonk/42.html

Pam, this is one of your best posts yet!

Perhaps the kindest comment one could make about the old IDSA Lyme guidelines is "wishful thinking." They certainly don't represent science. I had hoped that the new panel would be more fairly constituted, but it doesn't look like it when IDSA empanels a veterinarian rather than a Lyme-literate doctor. If you were creating a cardiology panel would you exclude cardiologists in favor of podiatrists or optometrists? If IDSA was a laughingstock before, what is it now? Discredited, to say the least.

Last year was my 20th anniversary with Lyme symptoms. For the first 14 years the specialists at the local medical group denied Lyme and vaguely called it arthritis. My own PCP called it "Coxsackie Virus," then denied it two years later. I thought the local VA Hospital might be more enlightened but discovered a Wormser disciple there who nodded her head sweetly and told me to go away.

Since 2002, in the care of a Lyme-literate MD, I've been on and off antibiotics several times, both oral and IV, and have succeeded in beating back the symptoms each time. But inexorably the symptoms return. The insurance companies won't cover treatment and the personal expense has been enormous. Had the original diagnosis been more accurate and timely, the cost could have been minimized. Research and funding now will offset much future tragedy and expense. It's shameful that IDSA opposes such research.

I, too, highly recommend reading "Cure Unknown." Ms. Weintraub's six-year research is credible and hard-hitting. It reads like a spy novel. Any self-respecting ID doctor ought to read it and either resign from IDSA or pledge to reform the corrupt and ethically bankrupt organization.

Fabulous article Pam...would be really helpful if it could be reproduced in multiple mainstream media publications, discussed in talk shows or visual news programs. I would also not give up on the new panel, perhaps if they are truly unconnected to the IDSA and their interests the scientists actually doing the research will be consulted and their findings reviewed. The trick is to ensure that the new panel has access to and is willing to consider the new research. How can we make this happen? I think by publicizing what you have reported in your article in newspapers, magazines and online, by mainstream media interviews of the scientists etc. perhaps the new panel will feel compelled to consider all the evidence and not simply rubber stamp the old guidelines without carefully considering the latest scientific research. How do we make this happen? There must be a way to reach the medical community charged with this responsibility.
I understood that a public hearing was required by Blumenthal, all the discussions and evidence have to be in plain view and accessible to the public, that is a start....and perhaps also new trials treating the sickest of patients can be initiated by accredited hospitals, the results of which can provide results contrary to the IDSA's biased trials. Just a thought.

I just completed reading Cure Unknown and my husband is just starting. It is the most comprehensive book on lyme disease and the lyme wars out there. It was quite an education and I am very glad for it. I stand with Pamela that the people hell bent on having the lyme ball in their court, will in time, because of irrefutable science, trip on that ball, fall flat on their faces, and crawl off the court.

I am very concerned and angry that the IDSA has not one LLMD on the new board. Is this another set up? When is this power team going to fall? Will they analyze the science? Will they find new cleaver ways to scrap the science? Can anything, even good science stop them?

It is daunting to say the least. As a lyme patient going on 8 years who's son and father both have lyme, I pray that something will turn and people, OUR CHILDREN, will receive help and healing before its too late!

As a writer who suffers from Lyme, I want to thank you for making it very clear that the old guard diagnostic tests are cruelly inadequate -- especially considering the new ways that are rapidly becoming available.

Pam,

Thank you for a well thought article.

Sometimes people need to stop looking back-- and move forward with new information and new research to support their arguments.

It is clear that if the IDSA- with all their funding and grants could do ONE study to really prove that Chronic Lyme does-not exist-- they would do it.

The problem is that the IDSA can not prove that chronic Lyme does not exist. They can only say in their landmark study that some people that took one antibiotics for 28 days did not get better--- so it must be the patients and not the medical protocol.

Take Care
www.lymefriends.com/profile/blake

In the nearest large town to us -- 150,000 people -- there are NO doctors on the "approved" lists of insurance companies who will diagnose or treat Lyme disease outside of the IDSA guidelines. The big fish in this small town make life hell for any health practitioners who do recognize and treat Lyme appropriately (there are 2 who will diagnose it, one who treats (inadequately)). These people also do their best to block insurance payments for Lyme treatments, saying "there is no basis" for the treatment.

This means that more than 30 people that I personally know of have commutes of no less than 4 hours to see their Lyme doctors. Most of these people are extremely ill, many are in a serious financial bind, and the expense and the wear-and-tear is brutal. God help them if they need IV antibiotics, or have a medical emergency.

I'm just grateful that we finally have some ammunition for our fight, in Pam's and other's articles, documentaries now coming out, and in the research now available. It won't make a difference immediately, but I keep hoping that as we present this information to those doctors who are not creatures of insurance companies and who still have an interest in healing, we will make headway.

Thanks, Pam for a great article. I've read Cure Unknown, and I feel every doctor needs to read this book.

I have Lyme, diagnosed only 7 mos. ago, altho I've had symptoms for at least 15 years. 20-30 doctors missed the diagnosis.

I have to believe that science will win out eventually. But this disease is a time-bomb that will explode when hundreds of thousands of late-stage Lyme patients require long-term nursing care, ultimately paid out of Medicare and Medicaid dollars.

Keep up the good work, Pam. You are the voice of the Lyme community. And the voice is clear, reasoned, and compelling.

Imagine having an idea, developing the idea, finding others who like the idea, making money from the idea, staking your career on the idea.

Then imagine that someone comes along and proves your idea wrong. What do you do? Do you give up your idea or do you defend it by constructing elaborate rationales and hypotheses and attacking detractors? The former IDSA panel chose this latter path.

Nobel Prize-winning physicist Max Planck said:

“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

We can only hope that the new panel members are committed to scientific rigor and fairness, and possess extraordinary independence of thought, because if Planck is right, patients with chronic Lyme may have another 20 years to wait.

http://jama.ama-assn.org/cgi/content/full/301/6/665