The IDSA [Insurance Driven Society of America] lost in NY because we were vocal, and politicians knew their jobs were on the line, because extremely ill people had had enough.

If we let IDSA win in PA., you can pretty much chuck any gains made in NY.

Following is the IDSA's letter to Governor Rendell. If this doesn't motivate you to write to him personally, then I don't know what will ?

We finally have momentum, let's not lose it.

Memo to Pat or Ellen:
Please get an ILADS doctor to write and refute the IDSA's letter to Governor Rendell. Their phony study had more holes in it than a 6 year old's excuses with their hand stuck in a cookie jar.

We have got to bombard Governor Rendell with letters of the efficacy of long-term abx, but we also need ILADS doc's to help write as well.

The truth is on our side, but we must let the Governor know. We've got the Steere camp on the run, now is not the time to let up. We're going all the way. Write, call, e-mail, Governor Rendell's office now !

Note in IDSA's letter to the Gov, that one of their concerns is that it will "force Payment" of treatment ! Nuff said.

Lets' get moving. Here's the IDSA's letter.

June 28, 2005
The Honorable Edward G. Rendell
Pennsylvania State Governor
225 Main Capitol Building Harrisburg, Pennsylvania 17120
Dear Governor Rendell:
I write on behalf of the Infectious Diseases Society of America (IDSA) to strongly urge you to oppose the enactment of Pennsylvania House bill No. 1534, known as ``The Lyme and Related Tick-Borne Disease Education, Prevention, and Treatment Act.'' The legislation does not represent the views of IDSA, a national medical society representing more than 8,000 infectious diseases physicians and scientists, nor the majority of non-infectious disease doctors who also treat patients for tick-borne diseases. The legislation is based on ill-informed assertions that are not science-based. We are most concerned about the potential this legislation holds for engendering practice patterns that are detrimental to the health of patients.
Of greatest importance, IDSA opposes the bill's misguided attempt to legislate the prolonged use of antibiotic therapy for Lyme disease. Most physicians rely on the results of appropriately controlled clinical trials to guide their choice of therapies. Legislation should not be the approach to address controversies in the clinical diagnosis and treatment of medical conditions. This is particularly problematic in the case of Lyme disease treatment. Controlled clinical trials have shown no benefit from prolonged antibiotic therapy for the treatment of Lyme disease. None of the other diseases caused by spirochetal bacteria in the same general family as Lyme disease, such as syphilis or leptospirosis, are treated with prolonged antibiotic therapy. Not only does prolonged therapy cause unnecessary patient discomfort, inconvenience and expense, but most alarmingly, it may be harmful. Besides these problems for individual patients, the public health consequence of prolonged antibiotic courses may be to promote the emergence of antibiotic resistance in the community.
The premise for prolonged antibiotic therapy for Lyme disease is that some amount of Borrelia burgdorferimay still remain alive in particular areas within the body and cause some patients to feel unwell after a conventional course of antibiotic therapy. This assertion is biologically implausible and does not have any data to support it from well-conducted studies of Lyme disease treatment in humans. Moreover, it is inconsistent with the experience in other spirochetal diseases.
IDSA Lyme disease Letter - Page Two
Carefully designed and conducted studies of Lyme disease treatment have failed to demonstrate benefit from prolonged therapy and, of particular importance with regard to the pending legislation, have demonstrated harm. Such studies demonstrate that there is no difference in the measured improvement between patients receiving placebo and patients treated with antibiotics. In summary, the patient may continue to feel unwell, but the problem is not corrected by further antibiotic therapy.
In our opinion, the legislation also unwisely attempts to:
* shield physicians who prescribe therapies for which no benefit has been demonstrated, which will expose patients to harm, and endanger public health
* adopt legislative standards of procedure specific to the treatment of one group of diseases instead of the more logical approach of adopting a uniform standard for all licensees and all types of complaint
* force payment for treatment regimens that are not supported by professional standards
* establish a state task force on Lyme disease and related tick-borne diseases that specifies as its only physician members those few physicians who profess the use of unconventional treatments that are based on testimonials and not upon science. [The International Lyme and Associated Diseases Society does not represent the views of the vast majority of infectious diseases specialists nor the vast majority of other practitioners who treat patients for tick-borne diseases.]
In addition, contrary to the bill's definition for ``related tick-borne illnesses,'' Bartonellosis has not been established to be a tick-borne disease of humans.
To support our stance on House No. 1534, IDSA submits its Practice Guidelines for the Treatment of Lyme Disease, which were developed by doctors in the field of infectious diseases who are both familiar with patients suffering from Lyme disease and who base their guidance on sound science. We also provide scientific references included within the attached documents.
We would be pleased to talk with you further about the appropriate treatment of Lyme disease as well as the legislation whenever it may be convenient to do so. Please feel free to contact Robert J. Guidos, JD, IDSA's director of public policy and government relations at (703) 299-0202.
Sincerely, Walter E. Stamm, MD
President

He of course disagreed with long term abx treatment. We were both kind. I saw no need to yell or be rude as I know he would not listen to what I had to say. I asked him to consider personal stories of folks battling the disease.

I would encourage others to call and be soft spoken but get the point across the long term abx has helped you.

I think after about a minute or 2 he was ready to hang up but I got him to stay on by being reasonable and affirming in my conversation.

He said he was glad I was feeling better but he didn't think it was becaus of the abx. Iasked "then why am feeling better?" He said he wasn't a doc but knew that people with Lyme sometimes feel better after a while. I told him he obviously had no personal experience with Lyme if that was his opinion. He said it was the opinion of the doctors of IDSA.

Anyway, call him. There is stength in numbers as we know.

Dear Governor Rendell,

I'm writing in strong support of House No. 1534 which would protect doctor's treating lyme disease patients with long-term anti-biotic therapy.

I read with great interest the Infectious Disease Society of America letter to you, opposing this legislation. They sight a flawed study as their basis for oppostion. Their study on the efficacy of long-term anti-biotic treatment for lyme disease, utilized a much lower dosage, and much shorter time frame than what is required to effectively treat lyme. I've always been puzzled by their stance on this matter until I read one of their points of contention with the legislation. Namely, it would "force payment" of lyme treatment. I'll leave you to reach your own conclusions.

Hundreds of thousands of lyme patients have been cured and lead normal lives due to doctor's treating with long-term anti-biotics. This is documented, undisputable proven fact. None of these doctor's follow the IDSA's outdated guidelines.

It was once thought that coffee and stress caused ulcers, today they know it's bacterial in nature. Medicine is constantly evolving, and unfortunately some medical societies are slow to change.

The IDSA sites long-term anti-biotic treatment as potentially harmful. Compared to what ? Not treating lyme disease ? Lyme disease is a death sentence to all who have it and are not treated properly. It's a slow agonizing death, encompassing extreme pain, paralysis, psychotic episodes,etc., and eventually the debilitation of a major organ resulting in death.

Would we withhold long-term chemo therapy from cancer patients because the chemo may have negative health effects ?

The IDSA would have no qualms about treating acne with long-term antibiotics, yet a debilitating, life threatening disease like lyme being treated the same is beyond the pale in their estimation. Veterinarian's treat lyme with long-term anti-biotics on a daily basis. Dog's and cat's are entitled, but people are not ?

Recently, Governor Pataki of New York mandated that the state's medical board refrain from harassing doctor's who treat lyme victims with long-term anti-biotic's. Why ? Simply, because it works, people recover and lead normal lives.

I live in northern Wisconsin, an area of the country endemic with lyme. Many doctor's here who treat lyme patients with long-term IV and/or oral anti-biotics would find the IDSA's stance on this treatment protocol extremely puzzling, to say the least.

My teenage son owe's his life to long-term anti-biotic treatment when he became infected with lyme. January of this year, he was wheelchair bound, experienced dementia, and debilitating pain due to lyme. Today, with long-term anti-biotic treatment, he's back to being a normal, healthy 15 year old.

Pennsylvania is an endemic state for lyme disease. Please don't let another generation of your constituents suffer needlessly.
Wishing you all the best.

I live in PA and I would appreciate it if you could help with this.
Rendell is a good guy, I think he just needs to see the REAL side of this.

This explains why when I foolishly chose to resubject myself to the ID dept at Barnes, with the hopes of using a local Dr., I was bluntly told that the CDC was a politically motivated group that succumbed to outside pressure! I could not believe my ears!

This all happened last week. I couldn't make 2 cents out of it, but this ties it all together. Barnes is in St. Louis, and this sounds like what is going to be a national effort to subvert treatment for us everywhere.

it's not right to say,but i'm glad i wasn't the only "crazy person" with late stage lyme.

now that i have undeniable proof of my lyme,(tissue biopsy on right knee) positive for lyme,i can resume abx treatment.

i will write gov. rendell,and tell him of my plight and fight with lyme .
the above letter,from the i.ds, pisses me off to no end.i have a letter from dr.joe hassey i.d in abbington,sez i am getting to much bad info off the net.gonna show him my pos.tissue biopsy.can't wait to see his face....

thankyou for bring this above letter to light.it should anger alot of pa.folk's.....gary

Will try to write a letter, but does anyone have a fax number or email address for the gov?

Someone should send him a copy of the poll that Tincup did that lists the number of doctors most people have to see to get diagnosed. That in itself makes a good case for long term treatment.

And what about the NIH study? Does anyone know when that will actually get published?

Bea Seibert

I know that Columbia University Medical center just completed a study showing that 10 weeks of IV treatment helped patients that had cognitive impairment who had already had IV treatment for 3 weeks...so I might be able to cite that study....

If this doesn't work, you can find their treatmant guidelines on their website.

Hopefully the link works for you.

Kimmi
Just re pasted it.
just checked it, it works.

[This message has been edited by Kimmi_K_75 (edited 23 July 2005).]

Thank heavens your husband has you!
Ann - OH

(quote)
Thanks to all who will write to Mr. Rendell.

My husband was bitten with a tick,in 1996.Within three weeks,he was burning up,had loose bowels,chills,ears,that were red and they tryed to drain them,and there was nothing there.

He tested positive 3 years after going from doctor to doctor,and being hospitalized numerous times.

He is doing ok on bicillin,and biaxin.But it is a rollercoaster ride,he gets better,then the meds quit,and we gotta try something else.

He was always honest,and strong,never missed work,then one evening he had a large rash across his upper back.

Three weeks prior,he had a tick ,on his lower back.BUT,we didn't know what lyme was back then.

He started having severe panic attacks,it felt he had electric around his whole wasteline.

He was given a SPECT scan which showed the same as people with lyme encyph.

Then he was put on a 6 week iv,his spinal protein went from 128,,,too 56.

The spect given 3 months after the iv showed negative..

He had extreme brain fog 8 months later,again,another positive SPECT,again,3 months after the iv,it was negative.

His last 2 were positive,but no doctors will give hhim the iv,,

I feel very sorry for you moms out there that have children with this illness.It isnt fair.BUT have faith,children have strong immune systems,which is a benifit.

Lets hope they dont stop the treatments,everyone in our family,and even some friends are writing,for us.

My name is Neil Martin.

I was in good health until bitten by a deer tick in Vermont in June 1995. A bulls eye rash followed the bite and fatigue that became quadriparesis. My HMO misdiagnosed me and for two years gave me inpatient & outpatient treatments that were painful, expensive and non curative.

In 1999 I began IV antibiotics for Lyme disease, prescribed by a non HMO physician. THAT allowed to escape the horrors of Lyme.

The Infectious Disease Soceity of America (IDSA) asked you to not sign proposed legislation encorporating IV antibiotics for Lyme disease. The IDSA letter is political and undeserving of your attention. I consider it unscientific, sinister and malacious.

Neil

+====+=====+=====+=====+=====+=====+=====+

Dear IDSA

Please tell me why you attack ILADS and reject IV antibiotics for Lyme disease.

You seem eager to help those with AIDS - why not Lymites too?

My Lyme disease was misdiagnosed and mistreated by my HMO. IV antibiotics were necessary in order for me to recover but I was forced by my HMO to pay for them out of pocket.

Three times I began IV antibiotics and improved. Thrice I stopped too soon and declined.

My HMO gave me IVIG at $8000 a treatment but not IV antibiotics that were a lot more economical and beneficial.

I won a settlement from my HMO but it took 6 years.

What do you gain by rejecting IV antibiotics for persons who have Lyme disease?

I too will write a letter. This state is a catastrophe of lyme.....lets just let it proliferate folks! THen maybe one of theese bozo's will get it or a family member and then and only then will they understand and change their tune.

These doctors are doing such harm.

I sent an email to Rendell; let's hope he hears our voices and learns how this disease does not discriminate according to age.......

If the IDS and/or other MDs, have a more benign and more effective panacea for chronic Lyme, we're all ears. Until then, this is the only efficacious treatment modality available.

I also have a problem with taxpayer $ going to fund studies to disprove the efficacy of lt abx.

A better use of taxpayer $ would be to develop more effective diagnostics and therapeutics for Lyme and coinfections.

If it includes comments about IV antibiotics, (like the IDSA doesn't endorse that---I'm gleaning that from the above posts) I will surely write AND give them a copy of my report from Columbia Univ. Medical Center stating I need to be on IV antibiotics!!

Can someone open their recommendations for me? Thanks....

Some of you may want to cite Dr. F's study at Columbia U. 10 weeks of IV helped those with cognitive issues who had already had at least 3 weeks of IV.
www.lymediseaseassociation.org/Fallon_Study.pdf

quote:

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Originally posted by lou:
Getting ready to write my letter!

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you know, I don't know why IDSA bothers...they have lost the debate. Fallon's study is fairly conclusive. The klempner study was a fraud. they used a regimen (8 weeks of low dose oral doxy) which has to my knowledge never been double blind tested in the US against Bb s.s. neuroborreliosis. They lied in a citation at the end of the july 2001 paper in which they stated that the regimen chosen was because it was effective against neuroborreliosis and cited IDSA treatment guidelines as a source. the only problem is, there is nothing in the IDSA treatment guidelines which suggests oral doxy a proven, effective treatment in neuroborreliosis. Oral doxy ahs been shown in limited studies to be effective in european borreliosis. But those are different species. Worst of all, allen steere, who has championed the klempner study and used it in repeated articles including textbooks, himself has separately admitted at least twice in published articles since 2001 that oral doxy may be ineffective against neuroborreliosis. If he believes that to be the case, then how can he attribute any credence to the klempner results, beyond establishing that 4 weeks of IV rocephin repeat wasn't effective? There is a major illogicity here, and I want people to pursue this until steere and the others are exposed for the lying bastards they are.And remember, steere while not an author was a key participant in the klempner fraud by managing lab testing.

The people at IDSA are criminals. What they are doing is criminal. They represent intellectual criminals. And we shouldn't take it anymore.