The Lyme Cryme website goes it one step further. See the patents and names of the "IDSA 14" et.al.

See HOW they narrowed the disease defination of Lyme disease to profit off the sick and dying.

Many of the IDSA/CDC personnel own these patents due to the Bayh-Dole Act of 1980.

http://www.lymecryme.com

HELP END THE SUFFERING and Tell others what you've learned.

Lyme Disease is a BRAIN INFECTION, in the relapsing fever catagory in the taxonony database.

EMPOWER yourself, EMPOWER others... .

The controversy surrounding Lyme disease is not about long-term antibiotics; it's about a small group of ivory tower medical researchers who have hiijacked a disease for profit. Twelve of the 14 IDSA Lyme guidelines authors or their institutions stood to profit from their medical recommendations.

These conflicts of interest were so serious, that the Attorney General of Connecticut initiated an antitrust investigation that uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter. In addition, the Attorney General found that the panel suppressed scientific evidence and excluded opposing views from the panel.

There is ample peer-reviewed scientific evidence that Lyme disease can persist in the human body beyond the "one-size-fits-all" IDSA mandate that Lyme patients can only have 4 weeks of antibiotics. As part of the Attorney General's legal settlement, this evidence will be presented in a webcast over the Internet on July 30. You can watch it live from the Internet on at http://www.idsociety.org/.

DR: Kris Newby is listed as senior producer of this film . . . .
To the points she raises: The very political AG of the state where Lyme was discovered went after the ISDA panel, and the IDSA submitted to a review of its guidelines by independent scientists. From the Journal of the American Medical Association: "The IDSA was forced to settle the claim to avoid exorbitant litigation costs, even though the society's guidelines were based on sound science. The case exemplifies the politicization of health policy, with elected officials advocating for health policies against the weight of scientific evidence."

I am glad you took the time to watch this film. I have a friend who watched it with me. I have lyme disease. She said if she had not seen what I have gone through she too would have been skeptical of the film.

I am thankful for the film and the awareness it brings that so many of us have gone through.

My hope is that one day others will not have to go through what we are going through at this time.

Good resources to learn more are ILADS, CALDA, The book Cure Unknown by Pam Weintrab (sp?)

It is true...when it comes to things attacking the inside of our bodies we all have a lot to learn including the medical field. Let's find a cure. I wonder if I had been dx and treated when I first went to the doctor's with the bullseye rash, the positive western blot from Igenex Lab and most important the symptoms...if I would be well and back to work by now.

Instead, only about 1% of the doctor's I saw were lyme literate. Most said I was a walking picture of health with their testing. But, the problem was I had a great deal of difficulty walking, reading, seeing, processing, sitting upright, etc etc etc.

On DR's reply:
The central question here: Is the IDSA Lyme medical advice really based "sound science"?

What the Attorney General Blumenthal found in after a year-long investigation was:

---The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;

--Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;

--The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;

--The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";

--The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

--The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

After 3 years of research on Lyme science I maintain that there was no legitimate peer-review on the IDSA Lyme guidelines, and AG Blumenthal was doing his job -- protecting citizens from harm.

Kris Newby
Senior Producer, UNDER OUR SKIN
http://www.underourskin.com

You are to be commended for your excellent review of this extremely biased film that is full of misinformation and false assumptions. Four placebo-controlled clinical trials -- costing more than $8M-- have shown that extended antibiotic therapy is not beneficial for the treatment of "chronic Lyme disease". By contrast, there is not a single placebo-controlled study showing that such treatment is beneficial. Since there is no evidence to indicate that this condition is due to a persistent infection, antibiotic therapy is not justified in the first place. I challenge those who believe otherwise to present evidence, that will withstand the test of rigorous peer review, to support their false claims.

DR: Phillip Baker is executive director of the American Lyme Disease Foundation

Dan, I hope to God that you, or a loved one does not contract this terrible disease. I have watched my husband mentally, and physically waste away for the last three years. He tested positive on the Western Blot, and was given three weeks of antibotics which did nothing for his pain and suffering. He is now seeing a LLDR and is improving slowly, it is worth it even though it is all out of pocket. I find it interesting that you received letters in preparation for your radio show from the IDSA.

DR: I requested comment from IDSA before the radio show.

Thank you, Mr Rodrick.

It is nice to see the quotes from Johns Hopkins and the Infectious Diseases Society of America (IDSA) posted online for the public to view. Normally these groups work behind the scenes in the cover of darkness doing their dastardly deeds because their unsubstantiated theories have contributed to an exploding epidemic and countless people suffering, for which they and their Institutions should be held responsible.

But, by sharing their distain for doctors that don't tow the IDSA/Hopkins line and who actually treat people until they are better rather than depending on flawed studies that used flawed tests in the process, a novel idea don't you think, you have exposed their lack of innovation, their suppression of information and differing view points, and their failure to LISTEN to and LOOK at their mistakes (chronically ill patients) and make better the situation before more suffer and die.

Of course, in Maryland alone, the profits from the flawed tests Hopkins and the IDSA promote and use to support their theories (check and see who holds the patents on them or just ask the CT Attorney General who busted them) would hit them hard if they were to back down now. If they didn't stand on the bow of their sinking ship screaming at patients that they ARE better after following their IDSA/Hopkins insurance friendly, limited treatment guidelines that promote "cost-effective" antibiotics, the $3 million spent by Maryland residents on these nightmarish Lyme tests each year would dry up. Ouch on that!

So, perhaps before you jump on board their ship you might consider the other side of the story AND the IDSA's floundering credibility. It's like mosquitoes that go into a bizarre feeding frenzy after being sprayed with insecticide in order to get that last meal. They are playing out their last hurrah and are using you in the process as a big mouth piece and a wobbly band stand.

Don't believe it? Then ask yourself this. How many people with cancer would sit back and accept a test that missed 75% of those affected? (Check the 2005 Hopkins blood test study with Auwaerter as a coauthor- talk about insane) Then ask yourself, should Auwaerter be promoting guidelines (he is also the editor of the highly contested IDSA Lyme treatment guidelines) which state people must have not one, but TWO positive tests to be treated? Even Gomer Pyle would say, "Well, galllll leeeee" to that!

And maybe look back at a bit of Lyme history when you have time. You'll discover you are publicly promoting a group that insisted for years that Lyme disease was a virus and NO treatment was necessary, and it would go away on its own. It was only after "real doctors" discovered it wasn't a virus and antibiotics worked (by trying to help their patients) that things improved. Of course, the IDSA still dragged their feet not wanting to admit they were wrong. It's that little "law suit thing", you know, which put a big hitch in their giddy-up and keeps them barking up the wrong tree.

Then there are the billions of dollars wasted on "research" that they got from tax payers, as well as other groups. Since day one it has been hoarded by the IDSA supporters and often used to promote their theories only; shame shame. But then, I am sure the IDSA authors would be thought less of at their institutions if they were no longer their proverbial cash cows and were the center of attention in even more law suits. So, now they have no choice but to jump up and down on sick patients heads trying to shut them up.

And shall I mention their failed vaccine? Over 1,000 adverse event reports were submitted to the FDA by physicians and patients who were negatively affected after receiving their vaccine, BEFORE it was removed from the market and BEFORE the law suits starting rolling in. It was later deemed ineffective anyhow, so no big loss to the rest of the world by having it disappear, just a loss for the IDSA and their friends bank accounts.

While we are at it, let's address some of their other infamous myths/theories they've generated and supported over the years, for those who don't already know. It IS possible there may be someone out there who doesn't know better, besides you.

You CAN get Lyme more than once. You CAN still be actively infected after 2-3 weeks of antibiotics. All those "weird" symptoms CAN be a part of the Lyme presentation as the organisms travel throughout the body. You CAN be infected by more than one organism after a tick bite (Babesia, Bartonella, Ehrlichiosis, RMSF, etc). You CAN have Lyme without having a rash or a positive test. Blah blah blah...

You see Mr. Rodrick, we are not just a few "crazy" patients who have Lyme disease and then develop some mysterious "disease" after taking their handful, or in some cases, their recommended ONE antibiotic pill, and having it fail to cure us. We are growing in numbers and our kids are being negatively affected to the worst degree. Shame shame on those responsible and those who support them!!

IDSA/Hopkins can no longer continue to sweep us all under the rug and keep us out of site. Their "failures" wised up and sought additional treatment from doctors who actually follow their oath to "First, Do No Harm", and low and behold, their treatment worked!

We are now getting better with proper treatment and we are here to say to the dwindling number of Hopkins and IDSA representatives responsible for denying us treatment to STOP the madness, get over yourselves and move forward in the PATIENT'S best interest. Or just go away and leave us alone!

The IDSA and Hopkins must STOP the war they keep fighting and put their efforts into treating people successfully for their active infections.

Sincerely,

Lucy Barnes

I am so disappointed in your blog post. In the past, your incisive and honest journalism, that I frequently listen to on WYPR, kept me coming back for more. What happened this time? Have you just swallowed whole the IDSA line without any questions or research on your own. Do you think the big medical institutions can do no wrong?

Where then are the cures for cancer, Parkinsons, ALS, chronic fatigue syndrome? Where are the causes for the explosion of cases of autism and ADD?

Since there are a lot of unknowns and poor solutions to diseases currently, maybe a bit more humility would be in order from the establishment. Have you ever read about the case of H.pylori, the cause of peptic ulcer and sometimes gastric cancer? Those researchers were not at Johns Hopkins or the Mayo Clinic, or the NIH, or any big name fat cat medical institution. They were obscure doctors in western Australia. And were roundly criticised/villified for saying that it was a chronic bacteria infection. Ten years passed before the NIH gave them official recognition, and finally they were awarded a Nobel Prize.

New information from outside the medical establishment is frequently not welcomed. The Institute of Medicine says it takes 17 years on average to get new information into practice. In the case of H. pylori, a survey showed that many people are still not getting the correct treatment. And in the case of Lyme disease, where careers are built, patents obtained, NIH grants obtained, on the inaccurate notion that lyme is only an acute disease......well, it is apparently going to take more than 17 years.

Dan, I think you owe the producer of the film and the people who suffer from chronic lyme an apology and a chance to rebut your blog piece. Please contact the National Capitol Lyme group, who would probably be pleased to add some balance to this issue.

It is not surprising that Phil Baker, the executive director of the American Lyme Disease Foundation (ALDF) is defending the NIH’s studies on Lyme treatments, given that he was the person who was responsible for the design and assignment of these grants while at the NIH.

The ALDF is a foundation led by 5 of the 14 authors of the IDSA Lyme guidelines, and ALDF mail is delivered to New York Medical College, home of Dr. Gary Wormser, the IDSA Lyme Guidelines Lead Author & Media Liasion. In other words, Dr. Baker is a lobbyist for the IDSA (albeit unpaid, according to Dr. Baker). This is classic revolving door scenario—a revolving door that shuffles former federal employees into jobs as lobbyists, consultants and strategists.

Of the four double-blind placebo-controlled studies cited by Dr. Baker, the $4.2M “Klempner Study” is the **only** antibiotic trial that definitively concludes that antibiotics don’t help chronic Lyme patients. This study was rife with controversy from the beginning. The awarding of this grant was so contentious, that a GAO investigation was initiated (B-274269). The study was terminated early, and the sloppy conclusions were rushed into publication for political reasons. (For an excellent autopsy of the flaws in this study, read Pam Weintraub’s book, “Cure Unknown: The Making of the Lyme Epidemic.”)

The root of the Lyme problem is that the science is being tightly controlled by a small group of researchers with a commercial agenda and too much power over what gets published and who presents new findings at conferences. These are conclusions reached independently by the Attorney General of Connecticut, author Pam Weintraub, and our Lyme documentary, UNDER OUR SKIN.

The unbiased science says that Lyme disease causes chronic conditions that we don’t fully understand yet, and that antibiotics ease the suffering of chronic Lyme patients until better therapies are developed.

Kris Newby
Senior Producer, UNDER OUR SKIN
http://www.underourskin.com

It is not surprising that both Kris Newby and Pam Weintraub are guilty of sloppy reporting in their interpretation of the NIH-supported Klempner study. The GAO investigation was initiated by one of the applicants for the contract who felt that it should have been awarded to him -- instead of Dr. Klempner-- because his treatment protocols were superior; that is the right of any one who applies for a government contract. After a thorough review, the GAO ruled that there was no basis for such a claim and that the contract indeed was properly awarded to Dr. Klempner. In the protocol that was developed before the study was conducted, provisions were made for an interim statistical analysis of the data when about half of the required number of patients were enrolled. That's exactly what was done. Since the interim analysis showed no benefit of therapy and indicated that the outcome would not be different even if additional patients were enrolled, the study was terminated -- and the results published -- to spare other patients the inconvenience and risks of being put through a study in which the outcome was clear and unequivocal. Obviously, that would have been unethical, especially with respect to patients being given placebo who were at greater risk. It is clear that the criticisms raised concerning this study are due to a lack of understanding of how clinical research is designed and conducted. Both the design of the study as well as the results obtained were subjected to rigorous peer review, and the study was carefully monitored -- at every step of the way-- by an independent Data Safety Monitoring Board to ensure that it was conducted in accordance with the approved protocol. At least four different groups of statisticians conducted an analysis of the data and all came to the same conclusions. To claim that the study and its outcome was tightly controlled by a small group of researchers is both ludicrous and without foundation.

Well, I looked up the definition of documentary in the dictionary and find no reason to question this term for the film. It documents a story that is not getting out anywhere else, certainly not in the mainstream media, which should have been asking questions before now, but didn't. And still doesn't. How else are you going to tell people this aspect of a disease? The until-now untold story. The IDSA and others have every other information source blocked to us, including the medical journals and newspapers such as the New York Times, the Washington Post, and the Baltimore Sun. It has only been the smaller papers that have gotten it right. In fact, a newspaper in PA won a journalism award for its series on lyme disease several years ago.

Maybe you should review the history of AIDS and see how hard it was to get mainstream media interested in the early days. And consider that these media have sometimes been too protective of those in power. People want medicine to be pure, to get it right for patients. But every week there is new evidence of conflicts of interest, greed, wrong-doing. Why is it so hard to believe that lyme could just be another in a long line of errors in medicine? Medicine is practiced by people, not saints; there is a lot of money awash in medicine, some of it is acquired by wrongdoing. And some persons high up in the medical establishment protect their careers by defending lies. These stories need to be told, to keep the profession and the associated businesses honest. And to right the wrongs.

As far as the lack of a narrator is concerned, not all films have narrators--some let the people speak for themselves. This is a legitimate approach to filmmaking.

When you say that the IDSA view is based on credible science, I don't think you are a fair judge of the science, having read none of it probably. This is hearsay, right. The "authorities" who wrote it say it is credible. And a journalist passes this on unquestioningly? Does Johns Hopkins dictate medical dogma to the Sun? Do journalists think for themselves in a situation like this?

What is so annoying about the current treatment of patients with long term Lyme disease is simply that they are not treated in many cases. From a patient standpoint, whether or not one still has Lyme disease should not be the real question if it is simply going to cause a standoff between medical practitioners and patients. If the doctors and researchers don't believe that a patient can have Lyme disease then they should be trying to prove what condition the patient actually has.

Maybe it isn't Lyme disease that these patients have, but residual effects caused by the disease that have damaged the immune system or the lymphatic system. Whatever the reason, we need doctors and researchers to stop trying to be right and instead do what is right to figure out how to treat the patient.

What is so annoying about the current treatment of patients with long term Lyme disease is simply that they are not treated in many cases. From a patient standpoint, whether or not one still has Lyme disease should not be the real question if it is simply going to cause a standoff between medical practitioners and patients. If the doctors and researchers don't believe that a patient can have Lyme disease then they should be trying to prove what condition the patient actually has.

Maybe it isn't Lyme disease that these patients have, but residual effects caused by the disease that have damaged the immune system or the lymphatic system. Whatever the reason, we need doctors and researchers to stop trying to be right and instead do what is right to figure out how to treat the patient.

To Ms. Olson,

Your comment:

Not a single well designed, reproducible study to date has found B. burgdorferi in human patients following conventional antibiotic therapy. This casts doubt on the basic premise of long-term antibiotic therapy.

I beg to differ.......................

http://www.lymediseaseaction.org.uk/articles/persistence.htm

http://www.geocities.com/HotSprings/Oasis/6455/therapy-special-abstracts.html

http://www.ncbi.nlm.nih.gov/pubmed/15331421

http://aac.asm.org/cgi/content/abstract/52/5/1728

Who is Philip Baker working for? What is your purpose Mr. Baker? I challenge you to have a look at plenty of quantitative and verifiable information about the positive existence of Chronic Lyme Disease. Start at www.pubmed.gov. It's there on a Government site no less.

I found a Dr. who cared and knew what to look for, after 12 Drs. could not find and give me a diagnosis. You would fall into the camp of the first 12.

In your position as somebody who supposedly represents some association connected with Lyme Disease, if you are not at least for massive research to build up the existing research to substantiate that there is a very real illness here, then you should be ashamed.

How is Philip Baker from the American Lyme Disease Association actually representing Americans with Lyme Disease?

All I hear from people like you, who seem to have nobody who you care about actually dealing with this disease, is do nothing, maintain the course, like a crusade against common sense, reason and the rights of man.

Mr. Rodrcik's comments are appalingly ignorant in terms of his unstinting belief in science, as though it is a religion, and not the frayed, conflict-written exercise it has become as exposed in virtually daily reports about scientific fraud and misconduct as contained in newspaper reports. Does he read?

There is a critical subtext that runs through the comments unstated --- and that is the issue of *Lyme vaccines* on the part of the tiny cadre of clinicians who drive the IDSA agenda. In order to get an experimental Lyme disease vaccine through an Institutional Review Board, the investigators must show that their protocol is *safe* and they must show that the study design makes sense --- that they can show the vaccine is *efficacious.*

Well, in conducting a Lyme disease vaccine trial in a Lyme-endemic locale, it is presumed that many individuals already infected with the organism will present themselves for the vaccine shots. They may be asymptomatic, have subclinical symptoms, or perhaps have had full-blown Lyme disease in the past, with or without antibiotic treatment. Is it safe to inject these individuals with protein from the organism? This is completely unknown.

With the previous GlaxoSmithKline vaccine, many individuals became ill --- and it was believed that some became ill because the vaccine reactivated latent disease. There is no reason to believe this could not occur with future vaccines. The last Lyme disease vaccine was pulled from the market due to safety concerns. Some patients ended up on respirators and in wheel chairs.

The easiest way to solve this potential block to the marketplace is to lie and to say that persistent infection merely does not exist! (despite the evidence published in the medical literature to the contrary). Say it loud, say it repeatedly --- people will start to believe it.

One also knows that there is no test that can discern with any certainty who has Lyme disease and who doesn't. This is the second big obstacle to getting an experimental protocol approved by an Institutional Review Board. But again, let's "fudge" things and make the false claim that we have a fool-proof test.

Without having a sure fire test, it is not possible to do the necessary statistics to demosntrate efficacy. The results become nothing much more than a muddled mess. So, again, let's overstate the data - let's falsely claim that we have a test, and that Lyme disease is no longer a wishy-washy clinical diagnosis.

We know that this tiny cadre of IDSA-affiliated physicians are working with pharmaceutical companies on Lyme disease vaccines. This came out in the investigation by Attorney General Blumenthal. Dr. Wormser and Dr. Steere both admitted to be consulting to Baxter --- a company planning to market a "global" vaccine. Should anyone want to see the powerpoint slides - please email me and I will send you back the slides that were presented to a conference in the Czech Republic.

Was Dr. Baker at that convention where the information about the Baxter global vaccine was presented? There is some evidence to suggest that perhaps he was. But Dr. Baker, nor anyone from IDSA breathes a word about the vaccine --- but we know that they are very wound up about it. Even NIH is not backing a vaccine, something I was told once by Dr. Baker himself would never happen due to the injuries caused by the GlaxoSmithKline vaccine.

It is also worth nothing what is scheduled for the 2009 IDSA Annual Convention. It gives us clues as to what is important to the other side. The section on Lyme disease is all about VACCINES, and the distinguished or notorious (however you view him) Stanley Plotkin, MD will be there to drive home the point that we must have a Lyme vaccine now.

This is why persistent infection can't exist, and why clinical diagnoses (as opposed to laboratory diagnoses) are being condemned by IDSA.

IT IS ALL ABOUT THE VACCINE AGENDA. Just as Bill Clinton said, "It's about the economy, stupid! -- well, my summarization is that, "It's about the vaccine, stupid!" The vaccine agenda has driven the science in Lyme disease for decades now, and this drum beat is simply increasing in volume. This is why Dr. Baker and others engaged in the flawed studies that were designed not to show any positive findings. They did not want to find positive results. The study onthe use of long term antibiotics was designed to fail.

Yet, I know, as someone who suffers from chronic Lyme disease (for the last 13 years), that every time I reintroduce antibiotics, I experience a Jarisch-Herxheimer reaction. This only occurs when a person is infected with typically spirochetal organisms, such as Borrelia burgdorferi, syphilis, relapsing fever, etc.

If I had been "cured," I would not be experiencing a Jarisch-Herxheimer reaction with the introduction of antibiotics 13 years into this disease.

No study has yet looked at the cytokine profile of patients with purported chronic Lyme disease as they are introduced to antibiotics. One would expect to see an increase in BP, pulse, temp, and increase in pro-inflammatory cytokines (TNF-alha, interleukin-1, interleukin-6, interleukin -8) --- all of which have been descirbed in Jarisch-Herxheimer reactions in other disease states.

If you don't look, you are guaranteed not to find. This isn't rocket science. The most obvious of studies have not been done, and it's been thirty years since the disease was discovered!

I also know that my own case of Lyme disease has never followed the description provided by the IDSA clique (i.e., Wormser, Steere, Shapiro, Halperin, etc) . I did not improve with 30 days of antibitoics. Frankly, I never felt dramatically better with any antibiotics -- although the serious neurological relpase I experience over *four years* into the disease (when it was supposedly "cured") consisting of blempharospasm, torticollis, and foot dystonia - only responded to long term intravenous antibiotics. Without the long-term intravenous antibiotics, I would be in a wheel chair. With the foot dystonia, I was deteriorating to the point that I could not walk across the parking lot of my law firm to start the work day.

Of course, no IDSA doctor goosestepping to the instructions of the IDSA clique (Wormser, Steere, Shaprio) would have treated me --- but would have just let me suffer with the symptoms, claiming it was "something else." Some "mystery" disease. They would have done a mega workup, and then told me they couldn't find anything. They would have done nothing in the face of my decline.

Everyone seems to be afraid to use the "f" word, as I call it -- the "fraud" word. Fraud is when a person(s) knowingly creates a false perception upon which another person relies to their detriment. That is what I personally believe is taking place here -- common law fraud.

Journalism has an odd fetish about presenting two sides - as though that gets as "the truth" when there may be truly only one side that is true that makes any sense --- and it's obvious. Mr. Rodricks also doesn't know that the producers attempted to get IDSA to come onto the film, but they declined. I was at the IDSA convention when Kris Newby and Andy Abrahams Wilson were trying to chase down Gary Wormser, MD, and he repeatedly declined. Only under pressure from IDSA did Dr. Wormser make statements on the record. And, it was at that same convention when he spilled the beans and inadvertently admitted that he was consulting for Baxter Pharmaceuticals on a new Lyme disease vaccine --- something he failed to disclose to IDSA, even thought he was required to do so. That's called dishonestly.

As my last comment in response to a statement by Diana Olson, a PR person for IDSA (and not a doctor!) --- I will say that as a Yale-trained psychiatrist, I've never ever heard that "fatigue and mood swings" may be "adverse reactions to antibiotics." More rabbits out of a hat from IDSA. If you can't solve a problem through real science, just make something up!

In my mind, the fraud and misconduct that surrounds this disease approaches the fraud that we have been treated to in the Madoff scandal. It is large scale. Many people have tried to get the Lyme disease scandal investigated by authorities. To his credit, Attorney General Blumenthal jumped in. But overall, the misconduct has been too complex, too technical, too large for most outside of the Lyme community to grasp.

Let's hope that this ends soon. I am not opposed to a Lyme vaccine, but I am opposed to a Lyme vaccine that comes at the expense of the truth, and the health of a nation. And, at this point, we have little evidence to show that a vaccine will be safe or efficacious at this point in time. Why the rush? $$$$$?

I suggest anyone take a look at the website of the ALDF (www.aldf.com). The Board is full of attorneys and financial types. It is not a patient advocacy organization, although in the past, it has attempted to present itself as such - but what *is* it about? It reminds me of the PR fronts that major public relations firms devised to try to create the appearance of lack of bias, particularly around the smoking and lung cancer controversy. The bottom line is that the public is not being told the truth about this disease. The tight cadre of IDSA-affiliated physicians do not seem to care about public health, or individual patients, or arriving at the truth -- but we know that they do care about vaccines. What are they being paid? What are they projected to be paid should a study go forward? Unfortunately, all of this is "proprietary information," and even IDSA does not know this.

Lynn Shepler MD JD
ltshepler@aol.com

With respect to Phil Baker, PhD, it should be emphasized that he was merely the program officer at NIH for the studies on "long-term antibiotics," which was, in reality, a short period of time (2-3 months).Dr. Baker is not a physician. He has never treated a patient with Lyne disease. He has no personal knowledge of the disease that comes from either treating a patient with Lyme disease, or having Lyme disease himself. He's a number cruncher. Why he is now working for the ALDF is another question, which seems to me an ethically dubious undertaking on his part, in my opinion. He far overstates his knowledge about this disease.

Lynn Shepler MD JD
ltshepler@aol.com

Interesting....

After responding to thousands of letters, emails and phone calls from people around the country who were seeking help/education for Lyme disease....

I've never once seen or heard a positive comment from a patient or a health care professional about the American Lyme Disease Foundation or Infectious Disease doctors who followed the IDSA Lyme treatment guidelines.

You'd think in over 20 years of contacts with sick patients at least ONE person would have said they were helped or even cured using the methods the IDSA/ALDF and their cohorts promote.

But no. It's never happened.

I have, however, seen the IDSA promoting the ALDF and the ALDF promoting the IDSA... and both of them promoting themselves.

But then again, they don't HAVE Lyme disease, do they? Only financial ties to it.

OUR FOLLOWED THIS WRITER’S POSITION ON LYME DISEASE AND HAD RELATIVES DIE! This is simply lazy and sloppy reporting. Please do you job and actually read 1,000 articles, instead of merely quoting groups of fools who have so many treatment failures as to be pathetic.

I treat patients who have failed to recover or relapse, after the so-called sages this writer lists as the top players.

First, his "authorities" believe only think of pure Lyme disease, which is a folly--other infections are usually present according to 2010 medicine or discussed in detail in books or vast numbers of articles already in print.

Second, it is lazy and sloppy journalism to quote guidelines of folks who obviously have read UNDER 500 articles. Merely limiting medical care to dubious studies with massive design flaws is ignorance or effective clinical medicine.

You have just simply acted like a late adolescent and looked to "heroes" or medical "popes" for knowledge. These "experts" relentlessly fail to cure these infections, that some have been reported to medical boards over 70x.

Those top tick infection clinicians you ignorantly belittle, actually have read thousands of articles over a decade on this topic, and are not little children looking to mere "names" or agencies. These heroes look to ALL THE RESEARCH and treat to the point of cures.

Old world 1960's tick infection medicine kills people. You have done a great job merely quoting the masters of treatment failure.

No one has mastered these infection clusters, but mocking those willing to serve the failures of your quoted "experts" and this useful film, shows you are dissociated from reality. You write mere uneducated, sloppy and biased information. Your grossing biased and knowledge base to evaluate the prophetic movie, Under Our Skin, is comical. You are writing like a type of medical rascist offering propaganda that would make Mao proud.

You mock the filmed patients because you are too limited in your scholarship to actually read and study deeply. Your character resembles a sociopath with the empathy and capacity to listen only found in those with a dead heart. My relatives are dead because of nonsense like your blog article.

There are many in the patient community who attribute extremely nefarious motives to the IDSA in their quest to control the debate over Chronic Lyme. These motives include payments from insurance companies in the form of consulting fees in return for guidelines they can use to deny treatment, and interests in patented drags and vaccines that require a narrow case definition of Lyme to show efficacy. This may be true in a few cases, but I think in general the IDSA physicians really do believe they are doing the right thing by opposing long term antibiotic therapy. This attitude is however extremely paternalistic and deceptive. I will now show you documented proof of one blatant example of this very typical behavior.

Dr. Paul Auwaerter of Johns Hopkins wrote in Hopkins Medicine an online version of the Magazine (included as Document #2) that, “They [meaning ‘alternative’ practitioners] have no controlled studies that show that patients durably benefit. In fact, the opposite is true. For patients with persisting symptoms after initial treatment for Lyme disease, long term antibiotics were no better than placebo.” The first sentence is extremely misleading, while at the same time being correct in the strict sense. What the two latest placebo-controlled studies did show was that patients did get better with additional IV antibiotic therapy, but then relapsed after it was discontinued. These peer-reviewed studies were conducted by Krupp (2003), and Fallon (2007) . Krupp admitted that the treated patients did better than the placebo group, but then she made a value judgment. Quoting her: “Because fatigue (a nonspecific symptom) was the only outcome that improved and because treatment was associated with adverse events, this study does not support the use of additional antibiotic therapy….”. I would submit that it is absolutely unethical for Auwaerter to infer from this value judgment that “antibiotics were no better than placebo”. In fact, it looks like a rather blatant, if well meant, lie. Fallon’s study arrived at a similar result, but in addition noted that after antibiotics were discontinued, the patients’ cognitive gains went away. This is undoubtedly the motivation for the qualifier “durable” in Auwaerter’s statement.

I think the IDSA honestly believes they are acting in the best interests of the public when they say long-term antibiotics do not help with Chronic Lyme. They are expensive, and over-use can lead to the proliferation of drug-resistant bacteria. In the case of IV antibiotics, there are risks of PICC line infection, gall bladder trouble, and embolism. However, they should at least be honest and say that it is their value judgment that the benefits do not outweigh the expense and the risks to patient and public. In the final analysis, the patient should be the one to make this call. If you are lying on the floor with indescribable fatigue and about to loose your job and house, you may be very willing to accept these risks. I was and still am. I had a pulmonary embolism (a very painful and serious event which destroyed part of my lung) while I was on my IV antibiotics. I spent a week in Howard County General for this. Even if this were caused by my PICC line, I would do it again in a second. The fatigue associated with Lyme can be a living hell, and you will do just about anything to get out of it.

Most people would agree that if patients show any improvement (durable or not) from antibiotics in a blinded, placebo controlled study that would on the surface indicate a continuing infection that may be sequestered in deep tissue. Yet the IDSA has consistently maintained that this is not the case. Why? The main reason is that researchers are typically unable to culture the bacteria from patients (or animals) after treatment. The answer may be found in the work of Stephen Barthold of UC Davis. Writing in Antimicrobial Agents and Chemotherapy in 2008 he showed that after treatment the Lyme bacteria could morph into a form which cannot be grown in culture, but which is still infectious.

The Connecticut legislature passed legislation UNANIMOUSLY to shield physicians from attacks based on deviation from the IDSA guidelines. This was signed into law by Governor Rell a few weeks ago despite the objections of Dr. Shapiro and colleagues at Yale. The state medical association backed this bill, without endorsing the concept of chronic Lyme. They realize that the scientific water is muddy enough that there is no room for ex-cathedra statements from the IDSA restricting their ability to treat. If Connecticut can pass this type of law, so can Maryland.

Mark Asher
Ellicott City
http://web.mac.com/asherms1/HCLDA/Welcome.html

Oh brother, I wish you bloggers would do a bit of your own research before you go spouting off about things you know nothing about.
One thing I keep noticing lately is that all of the opponents of lyme disease are continually whining about how the lyme community is always lashing out at them.... however when any factual information surfaces that supports the lyme communities philosophies, the lyme opponents always to try to rationalize it or downplay it…. just as is happening here with the IDSA info. I think that my new friend Kris Newby did a great job of responding to that aspect so I won’t waste any more time on it.
It is true that the movie “Under Our Skin” did not have the grittiness often found in investigative journalism. Wilson chose not report on this disease as if it was an article in the daily news. He chose to portray a more personal, intimate view; a view of life through the eyes of a person afflicted with this horrid, often debilitating disease. By the way if you want names watch the credits at the end of the film.
And the Dr that was working out of his basement in that movie is Dr. Alan B. MacDonald MD from St Catherine of Siena Medical Center. He is a well respected Doctor of pathology with 35 years experience and several well documented research articles under his belt. He is an extremely dedicated man that only stops working long enough to sleep. He is so dedicated in fact that he even does some of his research from home spending his own money to finance it. Imagine that!!! http://stcatherines.chsli.org/research.htm
You state that “These clinicians can earn substantial amounts of money administering long-term antibiotic therapy” I am almost certain that Dr MacDonald must be a millionaire by now, working out of his basement and all lol. And what about Dr Auwaerter?
Another thing that Lyme opponents tend to do is act like the only research that is worthy of belief must belong to them. It is as if no other research exists. The young Dr Paul G. Auwaerter from Johns Hopkins, for instance, might want to think about reading other peoples research for a change to find out what’s new and exciting with lyme research these days.
Any “lyme literate Dr” (def: Dr that has successfully treated 1000s of patients with Lyme disease) and probably ¾ of the patients will tell you that lyme disease bacteria are pleomorphic. This means that the Bb bacteria can change from a spirochete with a cell wall into a cell-wall-deficient bacteria with a protective biofilm outer membrane. The Bb make this change in order to escape a hostile environment such as antibiotics, immune systems attack and who knows what else. Now there’s an area that Dr Auwaerter might want to consider doing some useful research on; the effectiveness of common biofilm busting antibiotics.
Speaking of antibiotics, a website is recommended in this blog that includes “a review of several studies” about lyme treatment failure. It was kinda lame if you ask me. There were what…2 studies….and they both used the same antibiotics in each of these 2 studies lol. Who can tell me which antibiotics are considered to be effective biofilm busters? You can bet that neither of the 2 researchers from either of those 2 studies would know lol……. and either would Dr Auwaerter or Dr Baker for that matter.
The antibodies produced in our bodies in response to the spirochete’s OSPs (outer surface proteins) are measured in both the ELISA and in the Western blot tests to determine whether a sample tests positive for lyme disease or not. These OSPs are not present when the cell-wall-deficient Bb are present (these OSPs are only present when spirochete forms are present) therefore test results are often just plain wrong [1], [2], [3], [4], [5], [6], [7].
Do you now have a clue as to why lyme sufferers stick to their convictions…cuz it all makes sense unlike the assumption that “treatment with 30 days of intravenous ceftriaxone followed by 60 days of oral doxycycline” will cure a person of lyme and if they still have symptoms it must be post-lyme or antibiotics just don’t work. Funny cuz other spirochetel infections can take months and even years to cure with antibiotics.
“The burden of proof rests with those who make this claim”…wait a minute here….you want a bunch of sick, broke lyme sufferers to do research now??? Well first of all there really is a lot of current research that is being ignored here. This current research needs to be disproved by those that object because all of the studies I have listed have been published already. Simply pretending that this research doesn’t exist isn’t going to make it go away!!
And as usual there has to be that crap about how all bacteria in the world will become immune to antibiotics just because lyme sufferers want to be treated. That is just the most ridiculous excuse ever and proves that no research was done prior to posting this blog. Minocycline is routinely used as a daily treatment for those with pimples. What this means is that if I go to the Dr and tell her/him that I have pimples I will get a lifelong prescription for minocycline. On the other hand If I go to the Dr and tell her/him that I have a disease that causes me to become disabled I will get 2 weeks worth of antibiotics. Nice!!! I have to ask how the author feels about antibiotic use in livestock?? No-one seems too concerned about that… even healthy animals are allowed to have antibiotics to make them grow bigger and fatter while also causing the emergence of superbugs but you want to withhold the antibiotics from the lyme sufferers? Get real!!! And people like you will silently wonder how swine flu managed to infect humans!!
http://www.sciencedaily.com/releases/2007/07/070711134530.htm
http://www.worldpoultry.net/news/livestock-antibiotics-a-threat-to-humans-3745.html

[1] “Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme
neuroborreliosis.”Miklossy J, Kasas S, Zurn AD, McCall S, Yu S, McGreer PL. J Neuroinflammation.
2008 Sep 25;5:40

[2] “Cystic forms of Borrelia burgdorferi sensu lato: induction, development, and the role of RpoS.”
Murgia R, Piazzetta C, Cinco M. Wien Klin Wochenschr. 2002 Jul 31;114(13-14):574-9

[3] “New aspects of the pathogenesis of lyme.” Zajkowska JM, Hermanowska-Szpakowicz T. Przegl
Epidemiol. 2002;56 Suppl 1:57-67

[4] “Susceptibility of motile and cystic forms of Borrelia burgdorferi to ranitidine bismuth citrate.
Brorson O, Brorson SH. Int Microbiol. 2001 Dec;4(4):209-15

[5] “Conversion of Borrelia garinii cystic forms to motile spirochetes in vivo,” Gruntar I, Malovrh T,
Murgia R, Cinco M. APMIS. 2001 May;109(5):383-8

[6] “Serum-starvation-induced changes in protein synthesis and morphology of Borrelia burgdorferi.”
Alban PS, Johnson PW, Nelson DR. Microbiology. 2000 Jan;146 ( Pt 1):119-27.

[7] “Formation and cultivation of Borrelia burgdorferi spheroplast-L-form variants.” Mursic VP, Wanner
G, Reinhardt S, Wilske B, Busch U, Marget W. Infection. 1996 May-Jun;24(3):218-26.

Why doesn't IDSA just let doctors treat their patients? Why do they wage war against those physicians who deem longterm antibiotic therapy necessary? Why did it take an antitrust investigation from the Connecticut Attorney General to expose IDSA malfeasance? The film, "Under Our Skin," is not perfect. How how could it be? The disease is complex and insidious. But then, so are the likes of the IDSA Lyme treatment panelists.

The IDSA guidelines are used by insurance companies to deny coverage for treatment that, although expensive, can be life saving when used appropriately. Gary Wormser of the IDSA and his ilk cited their own work and ignored dissenting published scientific research when they constructed their treatment guidelines.

My wife's chronic Lyme infection was actively ignored by infectious disease specialists who believed the IDSA dogma. I watched her transform from a robust professional to a bedridden invalid in constant pain and requesting my assistance to help her end her life. She changed from a talented thinker to someone who could no longer read. It was long-term, intravenously-administered antibiotics prescribed by an experienced Lyme-treating physician that brought her back from the brink of death and restored her health. Our out-of-pocket expenses exceeded $100,000. We stretched ourselves to the breaking point to provide for her treatment. My wife lost seven years to Lyme disease but is now embarking on her new life with restored health due to a treatment that IDSA actively works to deny to Lyme patients.

"Under Our Skin" is disturbing. It is hard to watch at times. But it is documentary that I hope will help bring change to how the medical establishment deals with Lyme disease.

Steven Collier, JD, PhD

I am a physician who treats a lot of patients with Lyme disease. I was first attracted to this practice focus because I love medical mysteries. I don't assume that a patient's symptoms are due to Lyme disease, and I look for other conditions that may be the explanation. I have found in some cases that the patients who come to me with suspected Lyme disease have other conditions not related to tick bites (one particularly satisfying case was identifying celiac disease in a young woman whose chronic symptoms resolved when she avoided gluten in her diet.)

I have also diagnosed several cases of "co-infections" in patients whose Lyme disease had improved but not resolved with early appropriate antibiotic treatment. I have found many patients were infected with Babesia species (a protozoan species with some similarity to malaria) and they have responded to specific antibiotic treatment for this infection, and are now doing well off all antibiotics. Ironically, I started finding more cases of Babesia shortly after giving a talk to a Lyme disease support group, at which I said I rarely found positive Babesia tests. I don't know whether cases are increasing or the tests have gotten more sensitive. Because the state health department does not require labs to report positive Babesia test results, it is likely that this disease is grossly underreported in Maryland. I do use some tests that may not be considered standard practice by the IDSA or CDC, but until there are better tests, I find them useful.

Patients whose Lyme disease is diagnosed early and treated aggressively are not the ones I usually see in my practice -- they tend to recover promptly and fully (unless co-infected.) The patients who seek my help are usually those who did not seek medical care at the earliest symptoms, or who did seek care but were misdiagnosed (often with a "spider bite"), thus missing an opportunity for early treatment. Some of these patients recover with a longish course (several months) of oral antibiotics.

Patients who develop arthritis with Lyme disease often seek another opinion before starting expensive and potentially dangerous treatment with immune system modulators -- many of these patients come with a diagnosis of seronegative rheumatoid arthritis -- and I have found that most of them get significant improvement with oral antibiotics. They usually need to stay on low dose oral antibiotics or their arthritis symptoms return, but when given the choice of low-dose chronic antibiotics vs. injections with RA drugs with more serious potential side effects, most choose to stay on the antibiotics. On antibiotics, these patients have reductions in their blood tests for inflammatory markers. Are the antibiotics effective because they are killing Lyme bacteria, or are they effective through some anti-inflammatory property? I don't know; maybe it is a combined effect. Does it really matter if a less toxic alternative keeps symptoms at bay and inflammation down?

There are studies that support both medical camps in this argument, so it is hard to rely on the "science" to make clinical decisions -- the science is all over the place. The Lyme spirochete is a complex organism with well-documented abilities to evade the immune system (and the tests for Lyme disease rely on immune system response.) We need more research. We need better tests. And until we have more definitive science, we need to keep an open mind, be respectful of each other's opinions, help educate each other, and do the best we can for patients who need our help.

It's hard to know where to start when it comes to responding to the garbage put out by IDSA lobbyist, Phil Baker. As Kris Newby pointed out, Baker was the point man at NIH when the infamous Klempner study was awarded. At the time, Baker was described to me by a patient advocate as being over his head in the position (which he had only recently been awarded after the last Lyme disease program officer was demoted for harassment of chronic Lyme disease patients and the Lyme Disease Foundation), and not well versed in Lyme disease.

Baker's characterization of the impetus for the GAO investigation was only a half truth. While it was true that the formal request was submitted by a competing institution (Stony Brook), this was only after weeks of outrage and protest by the patient community directed at the NIH for their awarding of the contract to the team from Tufts, whose members had a long history of bias against the existence of chronic Lyme disease, a history that included active roles in the prosecution of doctors who held contrary views.

The GAO's investigation revealed the fact that Stony Brook's study design had actually outscored that from Tufts, and that the only reason Tufts won the contract was because they were judged superior in the "facilities and personnel" category, a very subjective and debatable result, especially considering the well known bias of the Tufts team. Let's face it, if you wanted to award the contract to your buddies, what better way to do it than to pick the one category whose score cannot possibly be objectively evaluated, and use that to push their overall score to the top of the heap.

NIH's choice was particularly galling because the study's very existence was the result of patient activism, a fact that drew disdain from certain members of the Tuft's team, who complained that the study would never have come to existence had it been handled through "normal" scientific channels (meaning had they had control over the decision, like they had with nearly everything else in regards to Lyme disease research).

To none of our surprise, the Tufts study turned out to be badly flawed, as concluded by Verim Research, a company that performs independent analysis of scientific research. Here are some quotes from Verim:

"Best estimate is that there is a 24% chance the study reached the wrong conclusion solely because of the small number of participants."

"The authors make a highly questionable generalization: that since this specific treatment does not seem effective, no long-term antibiotic treatment would be effective for treating continuing symptoms of Lyme disease. They support this generalization with the highly debatable statement that longer treatments have not been shown effective in other diseases."

"Researchers had a strong bias toward reporting a negative outcome. They completed the minimal requirements necessary to present their study as a valid, randomized, double-blind clinical trial but provided minimal post-treatment data, using insensitive measures."

The full report can be read here: http://www.verimresearch.com/Verim%20Research%20Klempner%20Lyme%20Treatment%20Analysis.pdf

UOS is definitely a documentary, and you would find this out by asking a dozen people in the field of documentaries. They will tell you that there is no "rule" requiring a documentary to be narrated, nor a rule to rigorously dictate the content of a documentary. But it is ironic--actually, hypocritical--for you to criticize the film on the grounds that it is “not journalism.” If you want to show balanced journalism, why are you picking a side so stridently?

There are certain core issues that transcend the argument about long-term antibiotics or “chronic Lyme,” and these cry out for attention. But you zeroed in on the controversy, picked a side, and made your Alamo stand. Give this all some time, and if you are fortunate you may see a reason to change your stance. But that’s not particularly important.

Here are some important things:

(1) The testing for Lyme is inadequate. The tests in use were never intended for diagnosis, but for surveillance. They have not been improved in two decades. Everyone acknowledges their inaccuracy, but no one brings out a better test, and the medical establishment closes its eyes about it, rather than waging an all-out educational effort to see that all the front-line physicians know how to diagnose Lyme, independent of the tests.

(2) It’s true that lots of people get the quick course of Doxycycline and get over Lyme quickly. But the other X percent (and it could be 30, 40, 50, 60 percent) do not. What seems to be almost universally true of these people is that their first physician does not see Lyme. Even today, in some states with lots of Lyme disease, there are physicians telling patients, “That can’t be Lyme disease, because we don’t have Lyme disease in this state.” See (1) above: the testing is inaccurate, and the physicians do not know how to diagnose Lyme. It may take two, three . . . five physicians before the patient learns that it might be Lyme. These are people who are getting sicker and sicker while not being treated for Lyme. Why is it a surprise that their cases are harder to treat when the disease is finally detected?

(3) Lyme disease is required to be reported, yet only about one in ten physicians does so. At any given level, local, state or national, everyone involved knows this shameful “secret.” In fact, there is plenty of hearing testimony where health officers will point to it, and the CDC mentions it on their website. But no one does anything about it. In fact, the state that was “Lyme Central,” Connecticut, has now had a long tradition of manipulating the reporting standards (so Lyme cases seem to rise and fall like magic), while doing absolutely nothing about the gross under-reporting of the disease by physicians. How do you know the full extent of the disease if lots of patients escape diagnosis and even diagnosed cases go 90 percent unreported?

(3) Lyme disease is growing and spreading. To repeat, AFTER 30 YEARS, it’s still GROWING and SPREADING. It’s an epidemic that has afflicted many, many more people than, say, West Nile virus, but our state and national health agencies do not devote anywhere near the resources needed to actually stop this growth. Effective efforts against Lyme could include education and prevention programs, but at no level is there anything like sufficient attention and funding.

(4) To take up the controversy over treatment, at least peripherally, let’s ask the important question: Are the patients getting better? What you find with the IDSA and other entrenched medical people is that they point to risks of long-term antibiotics, etc., but they offer no effective alternative to long-term Lyme sufferers who are not getting better by any other treatments. The loudest of these medical people do not actually lay their hands on any Lyme patients at all, they merely do lab and statistical studies. They bring up the risks of long-term intravenous antibiotics, and there are indeed risks to the patient, and also to society in the form of resistant strains of bacteria. But these Lyme “experts” are completely hypocritical. First, they know the truth, that physicians all over the world use IV antibiotics for dozens of diseases, because THAT’S WHAT WORKS. These physicians know there’s a risk to the patient, but they judge it to be outweighed by the benefit. There are millions of people getting antibiotic IV treatment, and Lyme is a very small part of the picture here. Further, the risk of resistant strains may be real, but those millions of cases far exceed the influence of any Lyme cases. It is a shameful fact that most cases of MRSA come from hospitals, where the spread of it is mainly laid to physicians who will not wash their hands and change gloves between patients. Yet in those same hospitals, those same physicians will turn to IV antibiotics for MRSA, since it’s the patient’s best and often sole hope of getting better—it’s WHAT WORKS. Any of these physicians objecting to IV antibiotics would make the same logical choice—try the IV—when faced with the alternative of just letting the patient die.

(4) No one wants to talk about the underlying reason for Lyme’s high incidence. Deer carry the ticks around, and that is why we have so many deer ticks. It’s true that little animals, such as the white-footed mouse, host the ticks in the first year of their life cycle, but deer give them the blood meal and transportation that allows each female tick in the second year to lay 2,000 to 3,000 eggs. If it were not for our overabundance of deer, we would have dramatically fewer ticks and dramatically less Lyme disease, as numerous studies have shown. Mention the deer problem and you get a whole new dimension of controversy. But, fail to mention the deer problem, and you have hidden the fundamental reason for the Lyme epidemic.

(5) Lyme is just one of the tick-borne diseases. Emerging diseases like babesiosis and ehrlichiosis (anaplasmosis) are found in the very same deer ticks, and these are also very bad diseases. About one-quarter of Lyme cases may involve a second disease that the patient got from the same tick bite. The same education, prevention, diagnosis and other measures could be put in place against these diseases, but that isn’t happening, either.

The bottom line is, when you get some real action on any one of these points, you are actually changing the grim situation we’re in. When you just sit around and take sides in the old arguments and controversies, you aren’t helping anyone get well, or preventing anyone from getting sick in the first place.

Try to see what’s important!

Dan, when you began your criticism of the documentary Under Our Skin by
bemoaning it's lack of narration, you immediately lost all credibility with me.
Your poorly thought out criticism only illustrated your inability to engage your own mind while watching the film.

Surely you must know that all documentaries are not made alike. Michael Moore has his own "confrontational" style and still others may use archival footage to tell a story.

Sometimes a documentary filmmaker attempts to make a recording of true events in as uncensored a way as possible.

Others will have to recreate a past incident when no archival footage is available.

But, when a documentary filmmaker attempts to record the true life events of his subject, it is common to not involve the filmmaker's presence (unlike Mr Moore) and to not use a lot of voice-over narration. You are meant to feel like you're an eyewitness to the events shown in the film.

The lack of a narrator is a style choice of the filmmaker and not necessarily a solid criticism.

Seems like you wanted a narrator to explain something to you or that you wanted the film to give you some kind of easy answer, maybe wrap it all up with a nice red ribbon.

Sometimes a documentary, and even a feature film from Hollywood, will not spell out everything for the viewer to easily understand. It is intentional.

Sorry, Dan.

That's the way it is. There are no easy answers to why some people get really sick from diseases contracted from tick bites. There really aren't all that many people actively looking for these answers either. Not at your Johns Hopkins, the Mayo Clinic, or the NIH.

That's really the story of Under Our Skin and it's a sad one.

I'm sorry you missed it.

Afflict the afflicted and comfort the comfortable. Is this the motto of the Baltimore Sun now? Or at least when it comes to Lyme disease?

Maryland is in the top ten in number of cases in the country, and Johns Hopkins fails to treat the disease!!!
We deserved better reporting from the biggest newspaper in the state.

I have not been cured by longterm antibiotics but I am still alive and functional, not dependent on anyone and trying not to go on some taxpayer funded program. But my insurance company is taking advantage of this situation.

How many chronic diseases have cures? How many of the patients in those groups are refused treatment?

Did you know that the IDSA and its groupies are opposed to anymore research, oppose the research that is called for in a federal lyme bill? What kind of medical people oppose research in a misunderstood and "controversial" disease?" Wouldn't research be the obvious thing to do?

Dan,
Thank you for acknowledging the beauty and powerful impact of Under Our Skin.

I'm very taken aback, however, that with a few contacts from physicians at Hopkins you consider yourself more of an expert than the filmmakers who spent years immersed in studying both Lyme disease itself and the politics of Lyme.

The many debates in medical journals or in Congress recently should have made you somewhat skeptical of absolute authority in the medical field, ( yes, even the authority of Hopkins which you apparently feel is the ultimate authority),

Because Hopkins has dismissed AG Blumenthal as being "politically motivated" you have cavalierly dismissed his finding after a year of investigation that the IDSA guidelines writers had conflicts of interest. I don't know how else it's possible for your to claim that only the word of the filmmakers and Lyme patients support this charge.

I saw in your bio that you are an NPR contributor. SO I still have some hope for you. Please watch the IDSA hearing on the Internet on July 30th when both sides of the story will be presented - including the scientific side that Hopskins has implied doesn't exist.

I only ask that if you write about this hearing you do it without contacting ONLY Hopkins or other supporters of the IDSA guidelines for information. With the amount of corruption that has been shown in our medical system in general, I hope you are still not so naive as to continue to glibly side with large institutions without independently studying the issue.

I wish to apologize to Pamela Weintraub for wrongly attributing the comments made by Kris Newby to Pamela's book. The "sloppy reporting" solely belongs to Kris Newby and is a reflection of the type of false and misleading information in her film. Although one might find a statement that Lyme disease is a life-threatening or fatal disease in a tabloid like the National Enquirer, such a statement would never be found in a first-rate medical text book. It simply is not true. For those of you planning to see "Under Our Skin", I strongly advise you to contribute the money to your local food bank instead where it can do more good.

Interesting to read this reaction to the film, which I have seen. Why should any one film be expected to be perfect and present every viewpoint? That is not the purpose of any one documentary.

When you accuse others of "sloppy" presentation of facts, you must be very sure that you are not doing the same thing. But you are! The IDSA's postion is based on old research studies. And on self-interests. Take some time to find out about new research, please. The public health of this country depends on the ability of opinion leaders to understand and present the intricacies of Lyme disease -- no clear presentation of symptoms, spirochete behaves in such a way that detecting its presence via current tests is nearly impossible, many doctors are simply uninformed (sort of like the first couple of years of AIDS), and ... well, I could go on and on, but I'll stop there.

All I know is that the people I know with ALS, MS, CFS, and FMS rarely achieve lasting relief of their conditions (in fact, CFS and FMS simply describe a cluster of symptoms). And I know that the people I know who have then pursued the possibility of tick-borne disease and then been treated DO get better. I know people who have risen from their beds after months and months and who now are productive and tax-paying contributors to our society.

Patients who get tested by "leading" clinics and are found "negative" (duh -- that is the norm for this disease) are treated incorrectly. The result of this that 10 to 20 years later the illness comes raging back, so out of control that it costs hundreds of thousands to manage. Is this really what we want to do with our dollars? I hope not, and I hope that you will understand the importance of learning about tick-borne diseases so that you can present accurate discussions of them in the future.

The people Phil Baker should be apologizing to are those with lyme disease. He has done them great harm, and apparently will never admit it. And I think the fact that his behavior was condoned and encouraged by the NIH when he worked there is evidence that a lot of taxpayer money is being spent to maintain an institution that is failing to help patients. This should be the subject of a Congressional investigation. Someone needs to see how all that money is being used. The perpetuation of a research establishment in this country is not the only goal of research money provided by the taxpayers! This may not be true of all the institutes, but the failure of NIAID is obvious in the case of tickborne diseases.

Baker's statement about lyme not being life threatening or fatal is astounding. There is definitely published medical literature on this point. There are also death certificates and autopsy results. This is the perfect example of how ignorant and destructive Baker, the IDSA and all the others have been. How can anyone make such ridiculous claims and continue to get away with it? Will they now tells us that no one ever died from syphilis, another spirochetal disease, or from Rocky Mountain spotted fever, or from ehrlichiosis?

For anyone who is expecting justice to be done at the IDSA guidelines review in a couple of weeks, please lower your expectations. The panel was handpicked to produce a rubber stamp of the existing guidelines. The current president of the IDSA has said as much--that there will be no changes. The so-called ethicist failed in his duty to eliminate panelists with bias, and instead allowed people with known IDSA treatment views to dominate the panel. And eliminated all the doctors with experience in treating the disease. So, what we have is a panel with no experience in treating the disease for which they will be judging the guidelines. It would be a farce, if the results were not going to be so tragic.

If Chronic Lyme does'nt exist then when does it turn into "something else" if the patient has had 3 weeks of antibiotics and is still ill? Are they then faking it or suddenly developing another illness? What if they improve, but not completely? If it was your family member was ill, what would you do? Until you have someone important in your life get this terrible illness, you will not understand that this film accuratly portrays the stories of myself and too many others. Oh, the guilt and remorse they will feel...

I have witnessed many diagnosed Lyme patients go through what could be described as their "personal hell" in dealing with the symptoms of Lyme disease. Although I do not believe in a literal hell, if it existed, there would special place reserved for Philip Barker. You, sir, deserve to receive the affliction that you so vigorously work to hide.

Dan Rodericks, thank you for providing a forum for discussion, even though your views are not well-informed. I hope next time you will talk to some doctors who actually treat people with chronic Lyme.

If you or a loved one has Lyme disease or think you do and you want more information and a chance to join other people who have discovered the hard way that the IDSA emperor has no clothes, please join your online state group by going to http://health.groups.yahoo.com/group/statenamelyme

Watch the CALDA website for updates on the July 30 hearing on the IDSA treatment guidelines. www.lymepolicywonk.org

For those who don't have Lyme and think it doesn't concern them - think again. Lyme disease today, your disease tomorrow.

Dan,
Why don't you leave movie reviews to the pros and learn how to be an unbiased journalist??

BALTIMORE SUN MOVIE REVIEW:
Documentary opens Pandora's box of Lyme disease: Disease becomes a lens for foibles of modern medicine in 'Under Our Skin'

By Michael Sragow
July 10, 2009

Under Our Skin is a documentary wake-up call.

This compelling account of the explosive growth of Lyme disease grows to encompass all the peculiar politics, corruption and inertia of American medicine.

Everyone agrees that the tick-borne disease is "the great imitator," mirroring a multitude of ailments, including fibromyalgia and Parkinson's disease.

But the ideas that Lyme disease can be chronic and that its treatment should go on for months or years have become points of controversy for physicians, insurers, and research funders.

They have also become matters of life and death for patients whose doctors close their practices in the face of professional threats and punishments.

Wherever you fall in the debate, you should find Under Our Skin a troubling group portrait of confusion and anguish. It makes a persuasive demand for more flexibility and real-life documentation in the definition and tracing of the disease.

Lyme disease has proved hard to diagnose and treat even in its most flagrant, short-term form. To flesh out its symptoms for novices - and to offer the comfort of shared knowledge for its victims - director Andy Abrahams Wilson has interviewed Lyme disease sufferers of all ages, from every part of the country. Many testify to the success of physicians who prescribe long-term regimens that include intense antibiotics.

Wilson gets at what's infuriating about the public discussion of Lyme disease. Academic and institutional authorities stigmatize patients as psychosomatics and condemn dedicated medical professionals as mercenaries or showboats for believing in a chronic form of Lyme disease. Journalists often fail to note the connections of these same authorities to companies that might prosper from the disease through the development of new vaccines and tests.

Although Wilson has been criticized for portraying the glory of the American countryside from the Hamptons to the Rockies, the visual beauty of the film underlies its most haunting theme. The closer humans get to nature, the more sensitive they must become to its hidden dangers. Under Our Skin details a medical nightmare. The movie only looks like a sun-kissed dream.

Under Our Skin
(Shadow) A documentary about Lyme disease by Andy Abrahams Wilson. Exclusively at the Senator.

Copyright © 2009, The Baltimore Sun

Dear Mr. Rodricks,

I find your comments on the film "Under Our Skin" quite disturbing. In my opinion, Andy Abrahams Wilson is a hero who should be hailed for bringing a heart to a very serious illness which devastates many, including myself. I have been a very energetic and productive person my whole life, attending university and taking care of my ill father all by myself, while also attending university and working to support myself. I have handled a great deal of stress gracefully, until I was bitten by a tick which resulted in my near death experience. I am often suicidal because of the devastation to my mind, my body and my finances. An experience which does feel to me to be a rather hell on earth. If hell exists on earth we only are to blame.

I find that we are embroiled in a discussion in which ego and profit seem to be the motivating factors and we are skeptical of people's own experience. Why is this? Why is it so difficult to believe people and their description of their own struggle? We have lost our humanity, and this worries me greatly. Health should not be for profit, and as my sister commented "health should not be a priviledge (a right, immunity, or benefit enjoyed only by a person beyond the advantages of most. Definition from Dictionary.com). But our health appears to be a privilege is in this country. I just heard a radio broadcast in which Obama's teams are working to make food as safe as possible so that people will not get sick and die from the food they eat. We will protect our citizens from the ills of tainted food, but we seem to have issue with protecting them from tainted judgement and ego and from a profit driven healthcare system. What is wrong with this picture?

I believe there are some key issues which you failed to address in your review of the film. You do not seem to be addressing the profit motivations of the people and entities involved in refuting "chronic" illness onset by a tick bite. You do not seem to address the fact that "Lyme" is a very narrow definition used to describe a bacterial infection transmitted by a tick, but that tick may also transmit a host of other pathogens which can cause an autoimmune response in some individuals. It is my strong opinion that we should break away from "Lyme", which has been narrowly defined, to a broader term which might describe the complexity of illness caused by multiple pathogens transmitted to a human being throught the bite of a tick. These other pathogens require treatment beyond the 6 week course of Doxicycline recommended by the IDSA.

I believe there have been studies out of the University of Davis veterinary department which indicate the bacteria may exist beyond an IDSA recommended course of antibiotics. If this is the case we are doing a diservice to humanity by claiming that the bacteria can not exist after a course of antibiotics, even if there is the smallest existence of doubt. It is a spirochete after all and thus has the potential to spiral into areas which might be difficult for antibiotics to penetrate. A couple of years ago I was getting all crunched up as the beautiful blonde woman in the movie experienced. I had muscle weakness beyond belief. I could hardly lift the trunk on my car. Only through the use of antibiotics and some other helpful, be it expensive treatments, am I now walking and moving about with my muscle strength returning. I have had permanent insomnia since the onset of this illness. I used to sleep easily and typically 8 hours per night, before the onset of my illness. I LOVED my sleep. Now I have to take medication in order to sleep. I'll tell you the lack of sleep alone is enough to push someone to do something they would normally be morally prevented from doing. This alone should be of public concern. It seems to me that we do not have all the answers, at least scientifically. Until we know for sure it seems to me that it is someone's ego at stake that seems to want to refute the existence of illness beyond a certain stage. My opinion is that we should continue to search for answers and that if people are finding relief through whatever means, that that should be available to them. Are we not a "free" people? We do not seem to be if we do not have all resources available to us for our health. We feed antibiotics to farm animals in the name of profit and yet we seem to have issue with helping people live better lives with the same resource. Why is this? I was dying four years ago and it has been a slow and financially devastating road to recovery. I can not explain the science behind my experience, all I can tell you is my experience, and that is that I tend to do better and move toward recovery when I am taking antibiotics and when I do not I move toward debilitation. Sciene in my opinion does little if it strips us of our heart. The earth used to be flat until we understood otherwise. I believe we do not know everything, and it is gauling, in my opinion, that some profess to know, when it is evident that they do not. Science and healing must come with a heart, for if not, we are not civilized. We MUST be willing to listen to people, and I honor Andy Abrahams Wilson for bringing a heart to the discussion. He is a brave man in bringing our vulnerabilty and struggle to the table.

I'm glad to see Under Our Skin getting a reaction. In 1999 my husband came down with a seemingly mysterious illness. Thousands of dollars worth of tests (paid for by insurance, so therefore by everyone) and seven years later, in desperation, I began trying to diagnose him myself. With the help of the internet, it took me only about 10 minutes to discover that it was most likely Lyme disease (we live in an endemic area, and his neurological symptoms were classic to the disease). Fortunately, as a molecular biologist, it was easy to collect the key literature cited by IDSA. Within the week, I had learned that the test he had had in 1999 which "definitively ruled out" Lyme disease is no better than flipping a coin (yes, it is that obvious, from a cursory review of the flawed mainstream literature, somehow published in prestigious journals, and thus politically trumping the abundant evidence that the tests are shockingly insensitive).
I also learned about the politics which prevented his diagnosis, and then about the politics which would prevent his treatment, if I did not find a "lyme literate" doctor. My husband's doctor, who had presided over the 7 preceding years of tests and attempted but failed treatments for an undiagnosed illness, refused to treat empirically a patient who had failed the "two-tier test" for Lyme, or to order a more sensitive test for Lyme antibodies, saying he wanted to practice "evidenced-based medicine". I offered to help him understand what was wrong with the IDSA "evidence". I could have walked him through it in 20 minutes. He said, "I don't have time for that."
How can anyone claim to respect evidence, if he "has no time" to look at it?
I am still trying to get over my feelings of shock and betrayal at how this shoddy IDSA-annointed "science" has continued to be propagated, and still dominates standard medical practice, after all these years. I'd be ashamed to publish such flawed work, and if I had refereed these papers for the journal, I would have rejected them out of hand for their circular reasoning, unfounded assumptions, and obvious confirmation bias. Patients and doctors who do have the time to look at the evidence have been protesting this situation since the early 90's, at least. And yet we still are stuck with the stalled science of the 1980's, when commercial interests (read the above comment about the failed vaccine, for one example) began to trump patient care as the motivation behind Lyme disease research, diagnosis, and treatment.
How can so few medical doctors have time to look at the actual evidence in the literature (not the IDSA editorial version)? And why won't they listen to their patients and the few doctors who HAVE taken the time? My husband's doctor's final argument (and I quote): "Allen Steere [often credited as the discoverer of Lyme disease] is the guru of Lyme disease."
Of course, one doesn't question a guru.
Even sadder than these doctors, is a journalist who can do no better than to quote the nearest established authority figures - who are, obviously, guaranteed to support the very establishment whose integrity is being questioned. More circular reasoning. Don't they learn about this sort of thing in journalism school?
Doctors are afraid of disagreeing with their peers. But a journalist has no reason to be so cowardly, and no professional incentive to allow himself to be so easily duped.
Mr. Rodricks, please take the time to read "Cure Unknown", which has both a narrator and detailed explanations of what's wrong with the science. Or email me, and I'll step you through it - it will only take about 20 minutes, if we think, instead of argue. If that's too much trouble, please recuse yourself from judgments about Lyme disease.
Laurelee Osborn, Ph.D
Boston, MA

The State of Connecticut's Attorney General had to regulate the IDSA due to ethics concerns. Where is the mention about that if we are speaking about worthwhile, balanced journalism?

Newsflash: Medical and pharmaceutical research is riddled with the SAME types of corruption and unethical behavior as we see form the financial institutions on the news.

That so many people are so incredibly sick after short antibiotics is EVIDENCE ENOUGH.

All these people with tickbites, all so horribly sick, it doesn't take a brain surgeon, or an IDSA "expert" to determine something is not right. This is common sense.

Lyme Denialists use academic bullying to ruin those who disagree. This is WELL documented.

Phil Baker said..

"For those of you planning to see "Under Our Skin", I strongly advise you to contribute the money to your local food bank instead where it can do more good."

It appears you are still trying to cover up anything that does not go along with your way of thinking. If you've nothing to hide, you should not be spending time playing on the internet and discouraging people from seeing this brilliant, eye-opening, educational movie.

That is like burning books... a big no no.

And I do believe the CT Attorney General already had his way with the IDSA during a lengthy investigation for doing that nasty "cover-up" stuff (called exclusionary conduct). I'd have thought you all would have learned better by now that all points of view should be expressed. After all....

That is the American way, Phil.

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Phil said... "Although one might find a statement that Lyme disease is a life-threatening or fatal disease in a tabloid like the National Enquirer, such a statement would never be found in a first-rate medical text book."

Actually, some of the most conclusive evidence presented of people dying from Lyme and tick borne diseases is coming directly from Johns Hopkins, by way of their patient's autopsy reports.

Unfortunately, chronically ill Lyme patients (many cases from Maryland) were denied antibiotic treatment for Lyme disease, relapsed when the medication was denied, and sadly, they died.

For future reference and to put this argument to bed...

To date there are:

Over 660 KNOWN reports of death from Lyme and TBD's. From information able to be gathered concerning dates of death, all but 12 of these deaths have been since the year 2000.

The KNOWN confirmed deaths (by autopsy) include patients from 21 foreign countries and 22 different states in the USA.

Additional KNOWN confirmed cases (case reports) of deaths are from CT, WV, AZ, KY and MD.

Known suicides deaths that have been confirmed include 20 patients from the USA.

`````````````````````````````````````````````````````

Of the KNOWN patients who have died and whose age has been confirmed (353 total), 42 of them were children under the age of 21.

One newborn lived only 6 minutes (autopsy).

Others range in age from-

14 -18 month old children

To children 2- 16 years of age

To middle-aged patients- many the sole support of a family left behind

To senior citizens up to 101 years of age.

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The reason you won't find this information in the "first-rate medical text books", as you stated above, is very simple.

It is because the IDSA members and their supporters are in control of what is being printed in the books and are the ones doing the writing.

They don't want this information out there.

What was that big word the Attorney General used again, Phil?

Yes, it was called EXCLUSIONARY CONDUCT. I believe the AG's wording was that the IDSA treatment guideline process was also "riddled" with conflicts of interest.

People are suffering, becoming disabled and are dying from Lyme and tick borne diseases.

It is not in dispute, it is a fact.

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May God bless those who have suffered and passed away from Lyme and tick borne diseases; and God bless their families and friends. They won't be forgotten.

Dan, I would encourage you, your readers and those participating in this discussion to go the the ALDF website and examine it carefully. Specifically, I ask you to click on the link "Learn More about Chronic Lyme". For a very long time, the only information found there was an article from Forbes Magazine, entitled "Ticks Aren't the Only Parasites Living Off Patients in Borreliosis-Prone Areas". There are now other articles and papers there, but this one remains as well. Please read it, and please remember as you are reading it that this is a medical professional website dedicated to providing the best information from the real experts of lyme disease. This article is one of the most malicious pieces of writing I have ever seen, ridiculing and maligning sick people and doctors who attempt to treat them. To imply that a group of sick people could have the power to push around government officials or anyone else would be laughable if it weren't so tragic.

But, I have a question for Dr. Baker: Do you not think that inclusion, indeed using such a slanderous article as your sole response to "Learn More About Chronic Lyme", gives you credibility? Readers, would you put your trust in any doctor who would be a participant in such an outrageous bashing. These are men of science using biased journalism to answer a serious medical question.

I would suggest, Dr. Baker, that your foundation has not only acted in poor taste, but has harmed patients suffering from "post-treatment" illness, potentially even contributing to the high suicide rate among those who suffer. The attitudes of many of the doctors my daughter and I visited after she was diagnosed with lyme stunned me. A neurologist's sudden lack of interest in helping with her constant headache when he heard she had lyme; a prominent IDSA doctor who told me that even though she had a positive test and had already been treated by another doctor, that she, like everyone in our county, just thought she had lyme, then promptly wrote "fibromyalgia" on her form without even a hint of an examination! I had never experinced such strange behavior from doctors! My point is that doctors have likely developed these attitudes by following the example of the leaders in their organizations. Doctors who read your website and believe these things then turn to their patients and deny their illness. Many parents begin to doubt their children's complaints. Do you have any idea how many young people have committed or attempted to commit suicide because of the isolation they endure because no one believes them? This knowledge is simply unbearable to me. It should be to you.

It will be very useful to have these comments by Baker and his friend Auweter in a file, collected from their posts on a public forum. One day there is going to be a class action lawsuit or a Congressional investigation, and then they can explain statements like "lyme is never fatal." This kind of lie may live in the apparently hopelessly morally compromised medical establishment, but when it leaves that domain, there may be a day of reckoning. How many people will suffer or die in the meantime? How many will lose their jobs, wreck their finances, never even be diagnosed correctly?

I used to think that it was very odd Lyme disease was so poorly handled by our medical "authorities" but then looked around and found people with chronic fatigue, autism, ADHD, and other diseases also were complaining. What does this say about the authorities? I consider the term "modern medicine" to be a joke. If you are a medical person and do not like this judgment, then explain to us why the larger community of medical people has not objected to these failures? Why have they not blown the whistle? There is strength in numbers: isolated complaints will bring retaliation. IDSA members should be demanding new guidelines and impeachment of the current officers.

And I have only one question to ask Dr. Auwuater and Ms. Olson. What would they do if they all of a sudden learned that their child, or their spouse, or their sibling had chronic Lyme disease. We all know the answer to that one.

Shame on you Rodrick . Obviously you have not even walked an inch in our shoes.

This is just shameful and sickening.

To those who support the IDSA and others who continue to want to deny the truth. What have we done to you? You would rather diagnose us with conditions and syndromes and diseases of unknown causes...when Lyme and co-infections can clearly be responsible for the majority of them.

We are not fools - so stop treating us as such. The science is there...and we certainly have NOT conquered nature as your mentality regarding this disease so clearly implies. Nature will prove this time and again.

Chronic Lyme does exist. Many have suffered through your diagnosis of CFS, ALS, MS...and have responded to varied treatments that can relate back to Lyme & Company...yet you deny those.

Are you listening? WE ARE DONE being denied. Our voices are growing louder and louder - all of you are beginning to run scared. Its clear in how you vehemently try to keep the masses on your side. But too many now are seeing that with proper diagnosis of the disease(s) that cause their problems - the root causes - that they can and are getting better...

Who are any of you to rob us of our lives? What gives you the right to condemn so many to lives filled with pain? To loose everything they have...and then ROB them of proper treatment? Who do you all really think you are? You are human beings who are fallible...and you are digging a hole that you deserve to be in.

How can a bacteria whose replication rate varies from 12-24 hrs be cured in 4 weeks? Your precious formula for writing prescriptions reflects this. A bacteria that has the ability to go dormant, you completely ignore that component. And why?

You see, in the long run, the drug companies would see a loss in revenue. If people were treated properly, at some point they would no longer need the mass of scripts that enable them to function now.

It is deplorable and despicable what you all are still able to do. BUT hear us loud and clear. WE ARE DONE with this - and WE ARE NOT going to stand for this any longer...

And Mr. Roderick...HOW DARE YOU continue to perpetuate this cycle of torture on the masses. People are truly suffering because of this debate. Children are loosing their childhood - and having to learn to live with massive pain and agony - when all they want is to go out and play with their friends.

You need to employ common sense as so many suffering through this have. We have searched for answers, because the medical profession has failed us.

Yet you choose to remain on board with them. WHAT ARE YOU GETTING OUT OF IT? It certainly is NOT the support of those who have read/heard you. IF you were a true journalist, you would seek the truth.

Those of us who suffer this political/medical battle - plus the disease(s) and all the comes with that deserve to be respected for what we must endure.

My case has progressed so far, that I suffer electric shocks throughout my body - especially in my spine - countless times day in and day out. Yet I have to care for my 4 children and husband and myself. I don't have time to be sick...so many don't.

Try walking a mile in our shoes...I know I can help you to feel what I feel - any chiropractor or PT office that does electronic stimulation can help you to experience my life...take about 1000 jolts from one of those machines for a day - maybe then you may have some compassion for those that you have so wickedly disrespected.

We are people who are sick - who suffer daily - and who simply ask to be treated properly - to be enabled to get better...

Instead we are filled with drugs, told we have things that have no known cause - therefore have NO HOPE for a cure...

Lyme offers a HOPE of improvement. Cure is Unknown - but better and remission are real and possible. But you would rather jump on board with those who condemn us to nothing but agony and misery...NO WONDER suicide with is the Number 1 killer of Lyme Patients...

In my book - those who hide the truth are MURDERERS...YEP KILLERS - because the facts support that proper treatment can help them get better...but they are constantly denied. That is murder plain and simple.

At some point the truth will not be able to be suppressed. Then all who have support this despicable view point will have no choice but to hang their heads in shame...Mr. Roderick, do you REALLY want to be among them?

Mr Baker, although i am from Romania I am familiar with the hypocrisy of many people in high position over there. And I have to tell you to your face yo are a liar and a hypocrit. Doctors dont deny treatment for cancer to ill people bc of its side effects. This is just BS, when the effect on the disease outweighs the side effects. So stop trying to pull that crap, bc Lyme patients are numerous and probably their number will grow bc of doctors ignorance, conflict of interest and unwillingness to help. One day people like you wont be able to keep ill people like me silent and it will all blow up in your face. You cant just do wrong to people and think it wont come back to you. If i were a doctor from the IDSA i wouldnt be able to live with myself. Hopefully they will come to their senses, but it will be too late for many lyme patients.

I'm a mental health clinician in the Baltimore Area... I also have suffered with lyme disease that went undiagnosised and treated for years. I have experienced first hand the debilitating effects of this illness.... and the frustration of years of misdiagnosis

This is a complex medical debate
with several schools of thought.

The hopkins, CDC folks who do not acknowledge chonic lyme; who believe in a "post lyme" syndrome" which they do not fully define.. but imply is largely psychosomatic

The Chronic lyme folks representwed by The International Lyme and Related disease Association (ILAD)

Then there are doctors like Johns Hopkins Lyme expert Dr. John Aucott who take a middle ground on the issue

I agree that an balanced and unbiased presentation of both groups should have been presented.

However I understand the "frustration" of the chronic lyme folks. Contrary to the portrayal of them as shooting from the hip , Ther position is also represented by respected researchers and MDs who are in the trenches seeing patients and with this disease.
Doctors like Dr. John burrascanno who is one of the top Lyme docs in NY.. Burrascanno was recently involved in a NY State Supreme Court case in which his methods were called into question. The NY State Courts ruled that based on the evidence both sides were engaged in a legitmate medical debate and therefore Dr. burrascanno was not treating Patients inappropriately. So even NYs highest court has acknowledged there is a legitmate debate. But the post lyme folks continue to try to discredit Docs and researchers who differ in their opinion on lyme.

Addtionally John's Hopkins researcher/Docs Like Dr. John Aucott have taken a middle ground and are moving away from a strict adherence to the Post lyme view and are open to the use of longer term antibiotic use. Dr. Aucott now heads up The Lyme Disease Foundation of Maryland; which is committed to ongoing research on both diagnosis and treatent of lyme. See "Tick Wars" in Baltimore Magazine.

This past spring lyme experts squared off on NPR's Diane Rehm Show. The Post lyme guest who was representing the position taken by the CDC even acknowedged that both their diagnostic and treatment protocols are antiquated and further research is still needed

So while the this "documentary " may be biased... it has to be understood a context... And that is one in which patients who are truely suffering (and have no prior history of depression, arthritis, fibromyalgia) are told there is nothing wrong with them... that they are just tired, or depressed.... And a context in which caring and informed treatment providers are bullied into not providing potentially life altering treatments.

I was recently able to chat with Dr. John Aucott by phone. He stated "I think we are all probably wrong"... He went on to say that the reasearch is still in he early phases and no one really knows how lyme effects individuals long term at this point... particularly if it is not diagnosed early on.

It would appear to me that based on DR. Auwauter comments
that his willingness to see real science and research in action is extremely limited in a very real and literate sense.

Having personally seen live spirochetes appear in a cyst
biopsy that was more than 5
years in existence,from a patient,whom had been on
reccomended antibiotics for over 2 yrs.
It would seem, that giving this &judging by the amount of others testing and clinical
responses aswell. That he might possibly be responsible enough to evaluate the international reseach organizations as well.
Most Sincerely
Dr. Cook Phd.

Well i just wish you could live my life for the past 2 1/2 years....to say its been a nightmare would be an understatement. I go sick in 2007 after many tick bites from living on the eastern shore of maryland. I went to doctor after doctor all over maryland searching for answers. Of course i turned to the "world renowned"Johns Hopkins Hosp thinking theyd surely have all the answers. After being there all day i was told my mind and body was disconnected and handed a prescription for transquilizers!! So I began to get sicker and sicker then my gyn said she was sure it was tick borne diseases. Since i didnt get early treatment i now battle over 50 symptoms daily!! I have my husband take me out of state to a lyme literate doctor that i believe is the best in the world. GET ON BOARD PEOPLE!!! This is a REAL disease that is debilitating SO many people and if you all dont open your eyes it will soon be a pandemic all over this country!!

Regarding the comments of Dr. Phil Baker, I would challenge him to comment upon or otherwise pressure Mario Phillipp of Tulane University to release the results of his studies on primate neuroborreliosis which have been supressed for almost a decade and which were directly overseen by Baker during his shoddy tenure at the NIH; in particular, I challenge him to pressure Dr. Phillipp on the results of the rhesus/doxycycline neuropathology trial which was supposed to be conducted in concert with the deeply flawed Klempner study. I would also ask Dr. Baker whether any concrete evidence exists that the vlsE gene is directly expressed in brain tissue, meaning whether it is transcribed, not whether antibodies are detected in CSF.

Of course anyone who studies the topic intensely, on every side, realizes that lyme is being intentionally covered up as a dangerous infection causing in some cases an untreatable encephalopathy. Dr. Baker is aware of this and some of the ALDF scientists he represents have published this themselves. This is what they are trying to conceal. Whether it is caused by persisting infection or some other post infectious process is debatable, but the fact is, and what they are really trying to cover, is that in some cases, lyme disease causes a dangerous, untreatable encephalopathy that remains chronic. Steere himself has published this. They try and fudge it in with other long term sequelae of the disease, such as abx-resistant arthritis. And even with all the fudging, however, Klempner in his study found a degree of disability in chronic patients equivalent to congestive heart failure.

That all being said, I do agree that the lyme film did not do a very good job at explaining things. An overwhelming case can be made that very serious and dangerous mistakes have been made by IDSA, the CDC, etc. wrt lyme policy. A much better source of information is the book 'Cure Unknown' by Pamela Weintraub.

Ms. Newby and others associated with the lyme film possess very detailed knowledge of the scientific controversies, for some reason it really didn't make it into the film.

It is just dumb for Dr. Baker to say that lyme is not a life threatening illness. This goes to demonstrate his ignorance, arrogance, and uncaring attitude toward his fellow citizens. In the fall of 1990, Allen Steere himself, whom Dr. Baker represents through the ALDF, was quoted in the NY Times as saying that some of the patients who had participated in a study of lyme encephalopathy authored by Steere had been forced to retire because of fatigue and neurocogninitve/neuropsychiatric disability. Steere compared the disease to late stage syphilis.

In addition to this, as Dr. Baker is fully aware, the much-maligned Klempner study, whatever its flaws, found that some patients with post-lyme syndromes had a degree of disability similar to or exceeding what is seen in congestive heart failure. While lyme is usually not progressive to death (it can be in rare instances) these chronic, disabling syndromes are at the least life-altering if not life threatening, and some of Dr. Baker's ALDF clientele are on record as stating that.

It simply amazes me how long we have tried to sweep this disease under the table. Even more amazing is how we turn our heads on very sick people not to mention those that show up with tick attached and bulls eye rash the size of a stop sign and say,” it’s ring worm”, “that’s not a tick it’s a spider”, “no such thing as Lyme disease in this county”, “that’s not a Texas Lone Star tick, do not have those in Virginia” etc.. All these comments from doctors! What even pulls me further underwater is those people with tick, rash and full blown positive ELISA and Western Blots to CDC standards that get two weeks of oral treatment or 28 days of IV and still do not improve, and still pop positive on these same tests months later, yet we say the tests are accurate and dependable? And what truly cements me to the bottom of the ocean is we have many military service men and women with virtually the same story and we fail them by not treating them or by sending them to the wizard because we think they are crazy, then we leave them with some incredibly ridiculous compensation, not to mention a career ending event and expect them and their families to live normal lives while not employed. And a few last questions? Why do we deny that this disease has long term complications that leave people disabled? I do not care if the bacteria are dead after treatment or not, many are still sick. Why does the CDC say it is a clinical diagnoses and the IDSA not? Why does the Veterans Administration (VA) list this disease as 100% disabling when in fact to the IDSA and CDC it’s treated like a scrape on the knee, “nothing to worry about”! Why does the VA list other tick and flea borne diseases as 100% disabling if in fact they are not? PEOPLE, THE ANSWERS ARE NOT IN SCIENCE BECAUSE WE DO NOT HAVE IT, WE ALL ARE MISSING SOMETHING, THE ANSWER IS THE PATIENT, WITH THE SYMPTOMS, THAT HAVE THE SAME RECURRING STORY AND MANY TIMES HAVE THE TICK AS EVIDENCE! The answer is we do not know! WHAT WE DO KNOW IS THAT PEOPLE SHOW UP WITH TICK, RASH, POSITIVE TESTS AND THAT HAVE PREVIOUSLY BEEN IN PERFECT HEALTH AND WE DENY THAT THEY ARE SICK AND WE CONSISTENTLY SHOVE THEM OUT THE DOOR and say NOT THE TICK BITE, DON’T CARE IF YOU WERE IN PERFECT HEALTH BEFORE THE BITE, CAN’T BE THE TICK!!! And what befuddles me the most is why we do not do preventive medicine for Lyme disease when in fact we do it for Malaria. Why do it for one disease and not the other? GOD BLESS THE DOCTORS WHO HAVE NOT GIVEN UP TO FIND ANSWERS!

Yeah for any member of the public out there don't listen to these ALDF/IDSA idiots because if you do you are likely to ignore or treat casually what can be a very serious infection. Just remember that there is a lot of money in lyme and some of these scientists are heavily invested in promoting a strategy calling for a vaccine. The last human vaccine cost 200$ a shot...contrast that with the tens of millions living in lyme endemic areas of the northeast alone and you can see that big money is involved. It is swaying people's judgements and causing them to downplay the extent of serious late stage disease. If the reality were acknowledged openly, the public might call for widespread deer culling (in 1900 there were 75 deer in the entire state of CT.) or other dramatic moves which could eliminate the need for a vaccine entirely. If such steps were undertaken 20 years ago, ie reducing NE deer populations to 1900 levels, lyme would not today pose a meaningful risk of infection to humans and indeed would be very rare.

These IDSA scientists are interested in exploiting lyme disease for profit. They need the disease to exist as a public health threat, otherwise they dont get to exploit the disease. They view the disease as a gold mine. It is paying Dr. Baker's salary. They don't give a rat's ass about your health or your family's health. They care about profits from vaccines, testing companies, and big grants to study the mysteries of lyme and so as to prop up academic careers.

Do you really think people with lyme just make this stuff up? Who would waste time and energy like that? I'm living proof of prolonged antibiotics giving me my life back. When I stop them I relapse, and when I continue I get better. People like Dr. Jemsek, featured in Under Our Skin are gods compared to the sniveling snobs at hopkins and the cleveland clinic who spout crap from some old textbook and don't care about, notice, or listen to their patients. We accomplished a whole lot of nothing at the big name cleveland clinic, $40,000 dollars later, where the flexible, open-minded, brilliant, and caring Dr. Jemsek has totally helped my whole family, as insurance companies drop him and try to sue him. The IDSA should be ashamed of itself, as it is no longer there for the people, just for the egos of a bunch of stale old men in a conference room! The truth always comes out eventually, so in time it will be easier for the people who need help to get it, but it's time that the medical community wasn't afraid of learning and growing with the changing world we live in, for the sake of the people they claim to be there to help.

As a Baltimore City resident, I was very sick, saw over 20 doctors at Hopkins and went undiagnosed for over 8 years. The Columbia Lyme Disease Center finally guided me to a Lyme Literate Doctor who is treating me for Lyme. This treatment has changed my life.

PLEASE READ WHAT THE COLUMBIA LYME DISEASE CENTER SAYS
( http://www.columbia-lyme.org/patients/controversies.html ) BELOW ABOUT THE DIFFERENT SCHOOLS OF THOUGHT REGARDING THE TREATMENT OF LYME:

"The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue."

Irregardless of who is right or wrong, we have hundreds of thousands of people in this country and around the world who are sick to the point of mental and physical incapacity, people who suffer an enormous amount of pain. For God's sake if long term antibiotics bring them relief, give them the antibiotics. At least until you can come up with something better. You just can't justify ignoring that these people are sick, that is genocide. People are dieing from this disease, all because insurance companys won't reconize that they are sick, and doctors are punnished for treating them.
I saw the movie, Under Our Skin, and cried, because I have chronic Lyme. Right now I am unable to work. Please help us.
Judy Prescott

Regarding Dan's original blog post where he says,

"There's not much in the way of journalism here, nothing you might call objective, detached, skeptical inquisition."

Does the irony escape him that he then spends the rest of his piece quoting primarily a PR person?

Detached, skeptical, inquisition in theory. Emotional naive toadyism in practice.

See seranogroup.org for facts.

Joel Spinhirne

We live in Loudoun County, Virginia. Pretty much every one on our street has lyme disease, most of us misdiagnosed to begin with, or diagnosed and undertreated and then left with chronic lyme. Oh yeah, and then there are the tickborne coinfections. Heard of babesia? Heard of bartonella? Heard of HmE and HgE? Probably not. Why, because you are too busy dressing the Johns Hopkins/IDSA emperors in their new clothes. We are very familiar with these infections because we've had them all.

Like you, we were completely ignorant of this topic until we were bitten by ticks and experienced this firsthand.

Why is it that so many people, after tick bites, develop MS/ Parkinsons/ ALS/ dementia and fibromyalgia? What causes those "diseases"? What is fibro, by the way? You are discounting us, and diagnosing us, so please explain, what has caused previously healthy individuals to all develop fibromyalgia after tick bites? Care to answer?

Long term antibiotic treatment for our very real, very virulent, Borrelia burgdorferi infections has saved our lives. Period. Thank God for LLMDs who are among the most brilliant scientic minds in medicine today. The IDSA typifies what is wrong with medicine today - old ideas, bad science, conflicts of interest, self-promotion, self-adulation. Like you, I used to think the ivy tower medical centers were always the best. Not anymore.

Watch the movie again, and this time, pay attention. Read Ms. Weintraub's book, carefully. The science which support chronic lyme exists. You are just not paying attention. I personally don't under what JHU's problem is. They seem to shine in other areas, but word is out to avoid Dr. Aut. and JHU when it comes to lyme. They are just plain wrong, and will deny you appropriate care.

Or, please feel free to come on out to our house, put up a tent, and spend a beautiful night under the stars. Ignore those silly little tick bites; ignore the tremors, brain fog, paralysis, OCD, shooting stabbing pains, anxiety attacks, heart palpatations, bone crushing fatigue like nothing you have experienced before - all which I guarantee you will experience after your night camping in our yard. Give yourself about 18 months to rethink your position on lyme, and then we'll have a real discussion.

The lyme bacterium genome published several years ago shows that this is the strangest pathogenic bacteria known to man. The genome consists of one chromosome and up to 20 plasmids of variable type. This is a situation unknown in biology. Even more bizarre, the lyme bacterium encodes hundreds of genes for which no known homologue exists in nature. This is important because usually when examining a genome scientists can compare gene sequences of the studied organism to computerized databases containing the sequences of other bacteria and from the homology (similarity) between known genes and genes on the candidate organism a great deal can be deduced about the organism's gene function.

However, with Bb, the lyme bacteria, this is not possible, because there is no homology whatsoever in hundreds of its genes. Therefore, this is to science like an alien organism, with nothing to compare to at all. The genome of Bb presents a completely unknown challenge. In addition to its unique organization and the large number of unknown genes, Bb is also known to present for instance a huge percentage of its proteins as surface lipoproteins, far in excess of what is typically found in other bacteria.

All of these things represent novel situations virtually unknown to biology. These scientists don't have a clue about Bb and they know it. They are trying to cover up an outbreak of what is basically an alien organism that is not understood. This is why the hopkins scientist said that probably nobody was right in their judgements about the disease. It's because nobody has anything much to compare to when analyzing the science of the organism.

Instead of wiping out the disease when the outbreak was first known, which could have been accomplished by massive culling of deer populations, the IDSA and CDC decided to go for a vaccine. The vaccine was pulled from the market. Now we have grown an entire generation of people who have late stage chronic encephalopathy with no known treatment. This is what Willy Burgdorfer, the discoverer of the lyme bacteria and a former NIH researcher, was referring to when he recently stated 'this is far to dangerous a pathogen to be playing around with'

And playing around is exactly what they are doing, because they want to line their pockets.

Mr. Rodrick,

In a sense, you are right. Not enough medical tests and evidence is there for the CDC, NIH, etc., to 'prove' the existence of Chronic or Acute Lyme Disease. But that is because the CDC and NIH have put blinders on to the possibility of either. They have not done any studies about either of these ailments because they refuse to accept the possibility they exist. Now THAT is bad science and specious speculation, which is, ironically enough, just what supporters of the CDC's IDSA guidelines accuse LLMD, LAMPs, and Lyme sufferers of doing.

They say they'll consider it 'when evidence emerges'. Well, what stops them from doing research to find said evidence? Are they not scientists and doctors themselves, fully qualified to do such research? Why the passive voice (and actions to match) all of a sudden? These are the kinds of questions you should be asking, instead of attacking Lyme sufferers, like myself, who only want to get better and live a normal life. Or the courageous doctors who WILL actually treat us so that we can have some degree of normalcy to our lives.

According to NIH, CDC, and the IDSA guidelines, we are not sick with Lyme and should not be treated for it. Well, I tell you, if I had listened to that kind of bad medical advice, I would not be able to type this comment now - in fact, I might not be here now at all. Long-term antibiotics have helped me get this far, and quite honestly, I will risk having antibiotics not work as well for me later in my life - since if I do not do this now, there may not be a 'later' for me. I suspect most Lyme sufferers feel the same way, for the same reasons.

I pray you never get Lyme disease, since, if you, too, doubt the existence of such serious conditions, you will not likely get the treatment you'll need because of your own prejudices. And that will be very sad for your family, since, left untreated, Lyme disease CAN and HAS killed.

In short, all the outcry and sad stories you saw in 'Under Our Skin' is necessary to get the attention this disease needs. If Lyme disease was being seriously treated by the medical community at large, there would be no need for such a film. And your negative criticism just proves that all the more.

So, thank you for your scathing review - your reaction is priceless.....

Another important point, left out of most lyme discussions. In the United States, this outbreak was first detected approximately 10 miles from an offshore bioweapons testing facility at Plum Island. It is known that biowarfare testing including involving ticks was performed there during and just after ww2. While this is often regarded as a conspiracy theory, it may not be so far-fetched. Research shows that the most dangerous and pathogenic strain of Lyme evolved in the United States and was transplanted to Europe sometime in the last 200 years. (likely carried there by migratory birds). This research analyzing particularly the OspC genes has been published by french and american researchers.

Moreover, these strains of Bb sensu stricto appear to be maximized for pathogenic spread in the wild. The serum complement resistance profile of dangerous Bb s.s. strain M31 shows that it is able to infect both small mammals and birds. In Europe, the other two strains of borrelia causing lyme disease, B. garinii and B. azfelii, typically effect either mammals or birds. (garinii being found in birds). So what we have in north america, now spread to europe in recent past, is a dangerously pathogenic organism with a much wider range of hosts in the wild. As continuing evidence emerges, we may see that Bb s.s. is maximized for pathogenicity along further lines than just serum resistance profiles and OspC infectivity/neurotropism. This may be the foundations of a compelling case for what is seen in NA and what is the cause of these illnesses being a bioweapons accident. This might explain also some of the cover-up.

Why does the IDSA continue to deny "chronic Lyme disease"? Here I sit with well over a hundred studies the original IDSA panel did showing the Lyme spirochete can persist even after repeated antibiotic treatment. Their argument for getting funding for the Lyme vaccine was--testing was unreliable and sometimes antibiotics could only control the Lyme bacteria but not purge it. Why is this concept so hard to understand?

Janis

This is taken from the "Orcinus" Closer to Home--Saturday,March 14,2009--by Sara--I thought this gives a great explanation as to the Lyme controversy. "A few perspicacious science journalists think they've got an answer. The problem,they say,started back in 1980,when Ronald Reagan changed the rules governing how scientists(and the entities they work for)profit from their work. Where scientists used to gain fame and fortune by publishing and sharing their work in conferences and journals---and were thus rewarded for furthering general knowledge---the new rules encouraged them to hoard their discoveries as trade secrets;and then leverage their patents and their seats on medical boards to write the disease definitions,mandate approved treatments,and completely control the scientific discourse in order to maximize the profits they made. The upshot--in all these cases--is that when a new disease is discovered,a small cadre of researchers rushes in to lock down the disease's definition,patent its treatment,and control the flow of information around it as soon as they can manage it. From that point,any further discussion of the issue is off-limits;and any new discoveries or treatments not controlled by this cadre are discouraged by means both subtle and brutal. So instead of ongoing scientific give-and-take that leads to increasingly better information and treatment over time,the entire research conversation stalls at a very early stage--and can stay stalled for decades. In the meantime,patients and clinicians are shut out of the discussion and left to work out practical treatments and new theories on their own,often in defiance of well-funded opposition that's staked its careers and fortunes on preventing any challenges to their established theory.

This is from the"Regional Disease Vector Ecology Profile-North Africa-Defense Pest Management Information Analysis Center-Armed Forces Pest Management Board-Walter Reed Army Medical Center-May 2000----Lyme Disease is also called Lyme borreliosis,tick-borne meningopolyneuritia,erythema chronicum migrans,Lyme arthritis,and Barnwart's syndrome. The causative agent is the spirochete bacterium Borrelia burgdorferi. Like syphilis,the clinical disease manifests itself in acute and chronic stages. Initially there is a highly characteristic expanding skin lesion(erythema migrans)that develops in abaout 60% of cases.Flu-like symptoms usually occur about the same time. Weeks to months after intial infection,cardiac,neurological or arthritic symptoms and other joint abnormalities may occur and persist for YEARS. Treatment in the late stages of the disease can be difficult. CHRONIC Lyme disease can be very debilitating. Early recognition and treatment are critical. It seems the Army understands chronic Lyme disease. I also wanted to add that it was the IDSA that coined the name"chronic Lyme disease".