People who "believe" they suffer from chronic Lyme???

Do you have any idea what it's like to have a chronic debilitating illness that is endemic--and still people think you're crazy?

Mr. Rodricks, living where we live there's a good chance you'll be touched by Lyme sometime in your life--either yourself or a loved one. Maybe then you'll "get it."

I respectfully disagree with Dr. Dr. Paul Auwaerter's comment that the IDSA Lyme authors' conflicts of interest were insignificant. Ideally authors of medical guidelines should have no financial conflicts when they make their recommendations. But if you look at the current IDSA guidelines authors:

--6 of the 14 authors or their universities hold patents associated with Lyme or tick-borne coinfections, including one author from Johns Hopkins.

--4 of the 14 have received money from Lyme or coinfection test kit manufacturers, and the 2006 IDSA guidelines made Lyme and coinfection testing MANDATORY for non-rash cases.

--6 of 14 have written insurance policy guidelines or testified against Lyme doctors in Medical Board reviews

--9 of 14 authors or their universities have received money from Lyme Disease vaccine manufacturers, past or present.

If Lyme disease is so easy to diagnose, treat and cure, then why are most of the IDSA Lyme guidelines authors working on and spending millions of gov't dollars on the upcoming Baxter Lyme vaccine?

In my opinion, the $250,000 that the IDSA spent on legal fees is a drop in the bucket compared to what they might spend on legal fees if the Atty General disclosed the detailed list of conflicts and antitrust violations by the panel members. The IDSA is not a small, patient-focused medical society. With net assets over $18 million according to their 2007 tax forms, one of their main activities is to help get Big Pharma clinical trials subsidized by government grants that flow through IDSA member universities. The end result is that this large amount of Big Pharma money is corrupting the evidence that comes out of our universities in ways were just beginning to discover.

Kris Newby
Senior Producer
UNDER OUR SKIN

Hi Dan,
This is "Michael From Towson" your firt caller today... I was a bit nervous and missed some of the points I want to cover.... So I'll add them and summarize what I took from the show today....

First... There is alot of confusion around terminology particularly around the term "chronic"

Dr Auwaerter uses the term "late" meaning it has gone undiagnosised.

It appears clear that Lyme that if not diagnosised early has the potential of manifesting into a multi-system illness.

Dr. Auwaerter did not dispute this and his own Hopkins researchers/Docs like Dr. John Aucott (who I had a phone conversation with last week) openly acknowledge it becomes a much different, more complex illness....

Lyme if it is caught early is generally easy to treat. (not always though) but as your guest conceded it may not caught early either because people don't know they have it or because the antibodies have not developed yet... resulting in neg test results.

So as I see it the issue is less about antibotics and more about what happens to people who are infected with Lyme long term prior to diagnosis ???
Your guest implied antibiotics may not be as effective with long term exposure.

Additionally.. . what body systems are effected by long term exposure to lyme ?

These are the questions that need further research. And These are probably the folks who are suffering from "chronic " lyme... Folks who have had the illness unchecked for some time.

There is research being done on this. Dr. Richie Shoemaker who is well know for treating the Pfiesteria patients on the Maryland's Eastern Shore in the late 1990's beleives Lyme produces neurotoxins which are not able to be cleared by people with certain immune systems. Much of his research is focusing on the inflammatory action of Lyme on the on the body and immune system. In talking with Dr. Aucott last week he also believes that looking at individual immunity is a needed area of research... even if the jury is still out on neurotoxins. Dr. Shoemakers has published with the NIH and as worked closely with EPA researchers.

I also felt that Dr. Auwaerter's response to the question about the CDC was a bit evasive. This past spring Diane Rehn devoted a show to the controversy of Lyme diagnosis and treatment. The guest representing the position taken by the CDS acknowledged that many of their diagnostic and treatment protocols were dated. He acknowledged that there was a great deal of new research being done, but added they were not a a point where they could replace their existing protocols

As I shared I am a Mental Health therapist in a local hospital. I work with medical residents from all over the world who come to our facility to train. In talking with them I constantly hear that their medical school's are teaching them that Lyme disease diagnosis and treatment is a bust... that unles it is caught very early the medical community does not have a clue how to treat it.... Again this echos Dr. Aucott who stated " I think we are all probably wrong.. and a lot more research is needed"

Thanks for having this interview. What came through was extreme confusion as to how serious Lyme disease is and how in need of serious research it is.

The doctor who is a spokesman for the society whose guidelines for treating Lyme disease are under fire was deft at gliding over the seriousness of having faulty recommendations out there for doctors and insurance companies to use to dismiss seriously ill patients after minimal treatment.

The "good" doctor was very dismissive of the Columbia University Lyme research center, headed by Dr. Brian Fallon, who conducted one of the best NIH studies on Lyme.

I have Lyme disease. I also have (CDC postive) babesia and bartonella, dispite being told these don't exist in Maryland. I was a healthy 46 year old when I got bit. The tick was on me for maybe 6 hours. I went on to develop orthostatic and cardiac issues from these infections. I went to my doctor, who dismissed lyme disease (even though I showed her the tick). It is 3 years later, and I am still fighting this horrible disease. Syphlis isn't treated with a short course of antibiotics, nor is AIDS or TB. None of the physicians who treat lyme following long term antibiotic protocols are on the ISDA panel.

Mr Rodericks-it's hard enough to get appropriate treatments..your one sided arguments are endangering the health of many Marylanders. Why don't you interview those from "the other side"?

I'm not exactly sure just why Mr Rodericks considers himself or the New York Times enough of an authority to critique a film concerning a disease about which he obviously knows little, and the film maker, much. Lyme, the disease itself and the dismissive attitudes of the medical establishment, tend to radicalize those who have suffered, either directly or indirectly, so Mr. Rodericks should not be surprised at the vituperative comments on his ignorance.

Like Mr. Newby, I also disagree with Dr. Paul Auwaerter's comment that the IDSA Lyme authors' conflicts of interest were insignificant. This is total nonsense! If they in fact are, why did they not disclose them to begin with? A quick read of Mr. Newby's points above (and the CT AG's Press Release: www.ct.gov/ag/cwp/view.asp?a=2795&q=414284) makes it obvious that they are VERY significant. The financial ties in question are to drug companies that make billions selling drugs for diseases that are often caused by, or are mistakeningly diagnosed, as a result of undiagnosed Lyme disease. Such pharmaceuticals include drugs for MS(costs of $100,000+/year for one person is common), lupus, fibromyalgia, chronic fatigue, rheumatoid arthritis, Parkinson's, anxiety and panic disorders, mood disorders, psychosis, etc. As a lawyer, I can tell you that if I tried to pull off this kind of scam, I'd be in BIG trouble with the Law Society here in Ontario, Canada. For some reason though, these physicians do not attrack the kind of discipline from their (self-)regulatory bodies that any expert on medical ethics would tell you is appropriate. I also have a feeling, as a lawyer and a "Lymie", that the CT AG's legal action is not going to be the last civil suit that the IDSA has to defend itself against! There's a growing number of angry "Lymies" out there and awareness is growing across North America. Legislation has been passed or is being initiated to protect LLMDs and to further REAL Lyme research. IDSA: This kind of stark and utter nonsense is not going to be tolerated any longer!
Paul Ianni, B.A., LL.B., Canada

Ms. Green brings up an interesting point. Dr. Auwaerter minimizes the significance of conflicts of interest with IDSA yet dismisses the research done by a well respected medical school (Columbia University Medical School) because they were supposedly supported by proponents of the Chronic Lyme camp.... Sounds a bit hypotricical to me !

Dan, as I previously mentioned I think the real issue is not so much about whether or not to use antibiotics long term.... (many people take antibiotics long term with no negative side effects) ... the real issue is what happens to folks who are exposed to lyme long term without diagnosis and treatment... It seems "chronic" and "late" lyme are likely the same condition...

The chronic fatique, muscle aches, neurological, hormonal, cardiac effects of lonmg term exposure to lyme...

I would like to see a show that addresses how these symptoms are assessed and treated.... as well as the research that is being done....

Have a guest panel with experts like...
Dr. John Aucott from Hopkins, Dr. Richie Shoemaker from Maryland's Eastern Shore, and NY lyme expert Dr. joseph Burrascano.
That would make for a lively and informative show !

Kris,

The Lyme crooks have never told us what OspA was
http://www.actionlyme.org/PresPam14.htm
and they never discuss their own biomarkers of disease:
http://www.actionlyme.org/BIOMARKERS2.htm

Isn't Chronic Epstein-Barr, like, um, Chronic Mono?
http://www.actionlyme.org/PHILLIPS_JE_PERVERT.htm
And doesn't it lead to Multiple Sclerosis?

They tell us we're nuts and don't have any real disease,
despite investigating and proving, *THEMSELVES,* that
we have real disease and biomarkers of it.

IDSA does not respond to rational arguments and
they think they can win by declaring us all nuts,
and what's winnable about that tack is rampant
mysogyny among this nation's physicians.

Males *LIKE* to hear all that derogatory crap about
women.

Because we scare them. Because we're not as dumb
as they like to self-convince of it.

"Accordingly, the methods of the invention provide a powerful and selective approach for modulating the innate immune response pathways in animals without giving rise to the toxicities often associated with the native bacterial components that normally stimulate those pathways."
http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=/netahtml/PTO/srchnum.htm&r=1&f=G&l=50&s1=6,800,613.PN.&OS=PN/6,800,613&RS=PN/6,800,613

The IDSA crooks don't tell us what OspA (Pam3Cys) is, and they
never mention Pam2Cys and how big that is, internationally
and in the real world's labs.

IDSA is stupid, they're stuck in a loop with all of their lies,
they can think up no new lies, and they missed the boat on
Pam2Cys. Plum Island was taken away from them and the
USA Nobels (Albany Awards) were given to the people who
discovered why LYMErix failed. Yale missed out on $1,009,000,000
worth of grants in 2008 and the bioweapons work went to Texas.
They got the AG up their butts and you caught Shapiro lying
his eyeballs out about congenital Lyme in your movie, which
was the reason the fake NPR.org radio show allowed Shapiro
a platform to regurgitate Yale/ALDF's same old BS about
Lyme being only a bad knee. Paul Duray was recognized for
his work:
http://www.actionlyme.org/CORIXARICO.htm
in addition to being hailed an American Hero for still
serving in the military (in Iraq) at age 70 years:
http://www.ascp.org/FunctionalNavigation/members/Paul-H-Duray-Pathologist-and-Public-Servant.aspx

Duray is the guy who really solved the New Great Imitator:
http://www.actionlyme.org/{PresPam14.htm
but we have to listen to these tards, and I note: They
never say anything scientific, ever, at all.

They're simply terrified of criminal charges at this
point, so they hired this loud-mouth tard, this Rush Limbaughesque
He-Man-Woman-Hater, Viagra-toting Oxycontine-head
simply to show the world they have one remaining Lyme
Kool-Aid Addict with a microphone and hypothetical audience
of medical red-necks.

Don't take them seriously.

Kathleen
http://www.actionlyme.org

Mr. Rodricks - if chronic lyme does not exist or is not the same as "late" lyme, then why is it that people with Lyme are never allowed to give blood again? Never again in their lives. Check it out with the Red Cross.

It's because the bacteria is still in the body.

IDSA has not proven that the Lyme bacteria does not persist in the body after a course of treatment. They have no proof.

I would never wish Lyme disease (especially undiagnosed Lyme) on anyone. However, I whole heartedly believe that if you or a close family member was stricken by Lyme that went undiagnosed and untreated, you would be singing a much different tune. You would have researched Lyme yourself and found out the truth about the diagnosis and treatment of the disease along with the reasons for the medical controversy surrounding it.

Remember Aids? Look back. The history of the Aids epidemic started out much like this current Lyme epidemic.

Your critique of the Under Our Skin movie borders on irresponsible reporting. You criticize the film for being somewhat one-sided, when your report is completely one-sided, focusing only on the IDSA position.

Thanks for the thoughtful show with Dr. Auwaerter. I listened to the earlier show on Lyme with Kathy Fowler and the "Under Our Skin" producer. I also listened to Kathy Fowler on Diane Rehm back in April. I don't think they made their case on either show -- I'm not sure what the case is. Dr. Auwaerter's discussion was clear, logical, and explained a lot of the issues that Fowler et al. raises as questions. Keep up the good work.

Dear Mr. Rodericks,

I, for one, hope you do -not- get Lyme disease chronic or otherwise. I certainly would not wish that on anyone. I do hope you live a long healthy life.

Please do not paint us in the patient advocacy community with such a broad brush. Most of the respondents to your Lyme blogs have not been mean-spirited to you personally or anyone else.

I believe all this will be over in two years. The science is advancing, although not fast enough for some. I would suggest you look in to the work by Stephen Barthold of UC Davis. And why not, just for grins, interview Dr. Fallon at Columbia. Or Dr. David Volkman, professor emeritus formerly of Stoney Brook. (What does Dr. Auwaerter say about -his- motivations? Or those of Sam Donta, a founding member of the IDSA and former head of the Lyme unit at Beth Isreal Boston who was eliminated from the original panel.) Surely, Mr. Rodericks, the Sun can foot the bill for some long-distance calls. Step out and get some diversity of academic opinion and read the minority report.

Many blessings to you and your family,

Mark Asher

In response to Kris Newby’s comments, her opinions about IDSA are just that. We would like to correct several erroneous statements.
We take issue with Ms. Newby’s assertion that our Lyme disease guidelines panel members had conflicts of interest. The authors of the guidelines did not have financial conflicts of interest. This is apparent to anyone who reads the guidelines because they recommend only generic drugs and diagnostic tests and do not recommend any vaccines. In fact, if the authors were seeking to profit financially, it seems obvious they would have recommended a lengthy, rather than a short course of treatment, and a broader definition of the disease so that more people would want a vaccine.
We take conflict of interest very seriously and require all authors of all IDSA guidelines to disclose any relevant relationships. We do not automatically disqualify prominent physicians or scientists simply because they work to investigate, prevent, or treat the disease in question.
What matters most is that the recommendations in the guidelines are safe, effective, and backed by solid medical evidence.
Rather than engage in an endless loop of point and counterpoint, let us simply state two important facts:
1) The medical and scientific basis of the 2006 Lyme disease guidelines remains in place and unchallenged.
2) Most importantly, long-term antibiotic therapy for Lyme disease is dangerous and is not supported by the majority of physicians who put their trust in science.
Anne Gershon, MD
IDSA President

Dear Dr. Gershon,

Sorry to start the "endless loop", but when you flatly state "facts" such as the two above, you -will- engender a response.

"Fact " 1 is obviously not true, since 9 of the 18 scientist-physicians giving testimony at the IDSA review committee on July 30th -are- challenging the medical and scientific basis of the guidelines.

The first part of "fact" 2 is of course valid, since there are risks with any drug. However, debility from chronic Lyme is also a very real economic risk... (certainly in my case). Drugs are used when the benefits exceed the risk. The question is who conducts that analysis, the IDSA, or patients in consultation with their doctors.

The second part of "fact " 2 is only true because the majority of physicians trust the IDSA to do their Lyme research for them. They have been let down, because they are given -value judgments- regarding the above risk-benefit analysis and told that there is zero uncertainty. This "fact" is becoming less and less true, as evidenced by the support given to the Connecticut doctor protection bill passed -unanimously- by the legislature, with the support of the state medical society, the objections of the IDSA and Yale notwithstanding.

Mark Asher
Ellicott City

Dr. Gershon,
I am a 22 year old woman from Toms River, NJ. I have been taking medication for Lyme over the course of this year. I HAVE Chronic Lyme, for how long I do not know. My symptoms (numbness of feet and arms, eventually my face and body, constant confusion, SEVERE mood swings, extreme fatigue, memory loss) started over two years ago and with no information EVER offered that it was possibly from a small little tick I never caught a bite. My grandmother has MS and I thought for a year that I had it and was too nervous to get checked out. Wish they taught us about this in Health class.
I went to a ID doctor who diagnosed me with Lyme June 2008 I went on Doxycyclin for a month. She gave me another blood test that came up negative. Of course now I know about the "false negative" blood tests (how a 22 year old knows that after two months of research and not a doctor who knows.) Within 3 to 4 months surprise surprise numbness and the works are back to haunt me just in time for the holidays! I am still on medication, I was off for one month switched around a bit to amox. but it didn't do anything for me, now tetracycline is without a doubt making everyday life better. Without Doxy and Tetra my sister's wedding would be a huge blur and sure would not of been able to dance. Finishing my teaching degree is hard enough with trying to remain focused on that plus working full time..my question is Doctor what would you recommend me to do? Stop taking medication? Do nothing to the bacteria diminishing my immune system? (which my new "lyme literate" AMAZING doctor says was at a scary low).
Please if you have a solution for this to go away LET US KNOW! Otherwise what is this debate about? Money? Power? Guidelines?? Whatever it is just help people. I want to live my life without worrying about medication I really do but to be off of it, I won't be able to move, live, run, dance. I'm sorry if I am flying off the handle but it's upsetting to see a post like this about Lyme. What you all should do with your money is put it into schools to let kids know the seriousness of the disease to prevent it from spreading more. So people will know that catching the disease early prevents long term medication. That there doesn't have to be a bite but those symptoms are related with Lyme. Sorry again to go on, I am very upset.
A little side note about long term effects of Lyme. My mother's friend was diagnosed with MS 7 years ago, 2 years ago they tell her it was a mistake it's Lyme at the time she was completely paralyzed. Now through the help of my "lyme literate" AMAZING doctor her mobile ability is getting better and has felt the best she has in years. Medication has brought her that joy.
My family does not shove medication down our throats we try the natural way whenever possible. However, there are certain times you must be medicated to be able to live and enjoy life.

Check for ticks!

Laura Pesce
Lymie