Inappropriate Publicity of Inappropriate Treatment

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Two Beacons of Lyme Disease Treatment under attack

A Commentator wrote:

The following letter to the New England Journal of Medicine (NEJM) was written after the NEJM made a big fuss and released a press release saying articles by Klempner, Nadelman and Steere were so important they were releasing them electronically in June [2001] ahead of the regular publication date. [They were published on July 12, 2001].

That press release and an interview were picked up by a NY Times writer who ran with it, of course. And of course, the article went across the country to all the major newspapers.

And then the NYTimes Sunday magazine published a long and very sympathetic article about Dr. Alan Steere by another writer who it turns out is a friend of his.

Now the NEJM rejected the following letter. Did we expect otherwise?

We could thank Drs. Stricker and Phillips by e-mailing a note. I think they would appreciate that. I hope they will write an op-ed piece for the New York Times.

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Several people have suggested a formal response to the July 12 NEJM articles. We had written this Letter to the Editor, but we were reluctant to publicize it prior to editorial review. However, the letter has now been formally rejected by the NEJM, so feel free to use it as you wish.

Ray Stricker, MD, San Francisco, CA

=================================

Inappropriate Publicity of Inappropriate Treatment for Lyme Disease.

Raphael B. Stricker, M.D.*, and Stephen E. Phillips, M.D.**

From the *Department of Medicine, California Pacific Medical Center, San Francisco, CA., and the **Department of Medicine, Greenwich Hospital, Greenwich, CT.

Send correspondence to: Raphael B. Stricker, M.D.,California Pacific Medical Center, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, Phone: (415) 399-1035, Fax: (415) 399-1057, E-mail: rstricker@usmamed.com

To the Editor:

The New England Journal of Medicine has done a disservice to the medical community and the general public with the early release of two articles on the treatment of Lyme disease by Nadelman et al. (1) and Klempner et al. (2).

The first article is a blueprint for disaster, while the second article is a disaster in print.

Nadelman et al. endorse a single dose of doxycycline for the prevention of Lyme disease following a tick bite. Based on the press releases that accompanied this article, one can envision doxycycline dispensers being set up along hiking trails across America.

Since the primary endpoint of the study, an erythema migrans rash, may be absent in up to 50% of patients who develop Lyme disease (3), the results of the prophylactic trial are highly questionable because roughly half of the patients at risk would not be evaluable under the treatment protocol.

Furthermore, the single-dose antibiotic regimen threatens to add to the growing risk of tetracycline resistance (4), and this risk is not outweighed by the possible benefit of treatment given the wide margin of error of the study results (95% confidence interval of 25-98%).

Compounding the insensitive endpoint and perilous treatment protocol of the study, the six-week evaluation period is far too short to assess the development of later-stage Lyme disease due to persistent infection with resistant microorganisms.

Klempner et al. demonstrate that an inadequate antibiotic regimen is no better than placebo for the treatment of chronic Lyme disease.

Of significance, the study found that roughly two-thirds (64%) of patients with chronic Lyme disease will have persistent symptoms after standard treatment for the disease.

This alarming observation underscores the inadequate standard of care for Lyme disease that is reiterated by Steere in his review article (5), and it emphasizes that this standard is completely out of touch with the clinical reality of Lyme disease for many patients.

In this setting, a three-month combination intravenous-oral antibiotic regimen is grossly inadequate. If patients are sick enough to merit intravenous antibiotic treatment, clinical experience supports the use of longer intravenous regimens in these cases (6,7).

Conversely, if patients fail to respond to one month of intravenous therapy, adding oral doxycycline for two months will not benefit these patients (6,8).

Thus the treatment protocol was doomed to failure because of its poor design, and characterization of the study ill-conceived antibiotic regimen as long-term treatment is fallacious.

Furthermore, the conclusion that subjects were no longer infected with B. burgdorferi based on plasma and cerebrospinal fluid testing is spurious, since tissue biopsy can demonstrate persistent infection in animals and humans with chronic Lyme disease despite appropriate antibiotic therapy (9-11).

It has been estimated that Lyme disease is underreported by a factor of twelve in the United States (12). Current testing for the disease is non-standardized and often inadequate, and the diagnostic criteria for Lyme disease remain controversial (13).

On a cellular level, it has recently been shown that B. burgdorferi infection may persist in macrophages (14), suggesting that long-term tuberculosis-type antibiotic regimens may be necessary for eradication of the spirochete.

In this setting of epidemiological, clinical and diagnostic uncertainty, care for patients suffering from Lyme disease remains abysmal, and advocacy of inadequate treatment regimens for the disease is unconscionable.

Significant improvement in the diagnosis and characterization of Lyme disease needs to be accomplished before we can waste time, money and ink on simplistic and unrealistic treatment approaches such as those published in the Journal.

In his editorial, Shapiro (15) discusses `Lyme anxiety' in patients faced with the diagnosis of a complex, ill-defined and potentially devastating infectious disease.

The early publication of these articles by the New England Journal of Medicine contributes to Lyme anxiety in physicians faced with the prospect of being sucked into the treatment of a highly controversial illness.

The Journal has done a disservice to the medical community by publicizing positive and negative Lyme disease treatment guidelines before most physicians have a chance to review them. This irresponsible behavior on the part of a major medical publication merits further scrutiny.

REFERENCES:

1. Nadelman RB, Nowakowski J, Fish D et al. Prophylaxis with single-dose doxycycline for the prevention of Lyme disease after an Ixodes scapularis tick bite. N Engl J Med July 12, 2001.

2. Klempner MS, Hu LT, Evans J et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med July 12, 2001.

3. Sigal LH. Current recommendations for the treatment of Lyme disease. Drugs 1992;43:683-99.

4. Chopra I, Roberts M. Tetracycline antibiotics: mode of action, applications, molecular biology, and epidemiology of bacterial resistance. Microbiol Mol Biol Rev 2001;65:232-60.

5. Steere AC. Lyme disease. N Engl J Med July 12, 2001.

6. Burrascano JJ. Lyme disease. In Conn’s Current Therapy. Philadelphia: WB Saunders Company, 1997, pp 140-3.

7. Fallon BA, Kochevar JM, Gaito A, Nields JA. The underdiagnosis of neuropsychiatric Lyme disease in children and adults. Psychiatr Clin North Am 1998;21:693-703.

8. Donta ST. Tetracycline therapy for chronic Lyme disease. Clin Infect Dis 1997;25 (Suppl 1):S52-6.

9. Frey M, Jaulhac B, Piemont Y, Marcellin L, Boohs PM, Vautravers P, Jesel M, Kuntz JL, Monteil H, Sibilia J. Detection of Borrelia burgdorferi DNA in muscle of patients with chronic myalgia related to Lyme disease. Am J Med 1998;104:591-4.

10. Straubinger RK. PCR-based quantification of Borrelia burgdorferi organisms in canine tissues over a 500-day postinfection period. J Clin Microbiol 2000;38:2191-9.

11. Cadavid D, O'Neill T, Schaefer H, Pachner AR. Localization of Borrelia burgdorferi in the nervous system and other organs in a nonhuman primate model of Lyme disease. Lab Invest 2000;80:1043-54.

12. Meek JI, Roberts CL, Smith EV, Cartter ML. Underreporting of Lyme disease by Connecticut physicians, 1992. J Public Health Management Practice 1996;2:61-5.

13. Stricker RB, Winger EE. Decreased CD57 lymphocyte subset in patients with chronic Lyme disease. Immunol Letters 2001;76:43-8.

14. Linder S, Heimerl C, Fingerle V, Aepfelbacher M, Wilske B. Coiling phagocytosis of Borrelia burgdorferi by primary human macrophages is controlled by CDC42Hs and Rac1 and involves recruitment of Wiskott-Aldrich syndrome protein and Arp2/3 complex. Infect Immun 2001;69:1739-46.

15. Shapiro ED. Doxycycline for tick bites - not for everyone. N Engl J Med July 12, 2001.

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A COMMENTARY:

Commentator wrote:

Consider the following experiment to determine the effectiveness of 10 different fertilizers:

Scientist A adds sand to 10 flower pots and mixes each fertilizer into a different pot. Then he plants 3 bean seeds in each pot; but he ADDS NO WATER. Four weeks later he concludes that there is no difference between the ferilizers, and that they are all ineffective because none of the beans grew.

Scientist B in Laboratory B repeats his experiment and reproduces his results.

The above experiment reminds me of a lot of Lyme research, in particular the recent work of Dr. Klempner.

Mr. X wrote:

Nope ...

Commentator wrote:

NOPE? Clearly Dr. Klempner's results were NEGATIVE, that is, antibiotics and placebos have the same effect.

Mr. X wrote:

Negative findings are not the same as positive results.

When something does not work it is called an EXCLUSIONARY result.

Commentator wrote:

So what is EXCLUDED in the fertilizer experiment? -- that fertilizer promotes plant growth?

What is EXCLUDED in the Klempner experiments? -- that long term antibiotic treatment benefits those suffering from chronic Lyme disease?

Is it possible that EXCLUSION is the result of stupidity or corrupt conflict of interest in the design of an experiment?

Mr. X wrote:

If you can't reproduce results, then it's bad science.

Commentator wrote:

And if you can reproduce results, does that make it good science?

What does "Negative findings are not the same as positive results" mean?

Mr. X wrote:

In order for the information to have value, Scientist A would have to form conclusions as to why he got negative results (no beans), then test his theory with another experiment. When he finally does get his beans to grow, you can duplicate his results by following his methods.

So, negative (exclusionary) results do not have the same value as positve results.

Commentator writes:

Now we are getting somewhere. Not only are they not of the same value, the MOST that can be said of negative results is that, under the SPECIFIC CONDITONS of the experiment, there was no effect. NO GENERALIZATION IS POSSBILE!

The conclusion that Dr. Klempner draws from his experiments, that long term antibiotic treatments do not benefit those suffering from chronic Lyme disease, is entirely without justification. What is frightening is that this generalization was published in the prestigious PEER REVIEWED New England Journal of Medicine.

Does anyone suffering from Lyme Disease think that "Scientist A [Dr. Klempner?] would ... form conclusions as to why he got negative results ..., then test his theory with another experiment?"

Does anyone think that "Scientist A" really wants to "get his beans to grow?"

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A Commentator wrote:

This information was posted on the Lymenet newsgroup. Sounds strange to me. Anyone heard anything more about it?

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Date: 10/17/01

If all else fails look at intracellular hyperthermia:

LYME DISEASE

Lyme Disease (LD) is the most common vector borne disease in the United States, and is endemic in Europe. In the US it is among the top 10 reportable diseases in both sexes and in all age groups. Although almost all states have reported cases, it is a major health problem in New England, the Mid-Atlantic States and parts of the U.S. mid-West.

LD is caused by spirochetes belonging to the genus Borrelia. In the United States, Borrelia burgdorferi is responsible for almost all of the cases. In Europe, LD is also caused by Borrelia garini and Borrelia afzelli. Like other spirochetes, these organisms can cause persistent infection with symptoms that may persist or recur over a long period of time.

CLINICAL MANIFESTATIONS

Following inoculation of the spirochete into the skin (usually by a tick bite), a characteristic skin lesion, Erythema Migrans (EM) appears as a diagnostic sign in some patients. If the spirochete gains access to the systemic circulation, infection may occur in a variety of tissues, resulting in joint, cardiac, ocular, and central and peripheral nervous system involvement.

Even without treatment, early-disseminated disease may resolve; however, it may also progress and result in significant morbidity (and occasionally death from third-degree heart block). Persistent infection in the joints, eyes, or brain can result in late clinical manifestations, which may be debilitating.

DIAGNOSIS and MISDIAGNOSIS

In some cases, clinical recognition of EM is sufficient for diagnosis of early LD. When other compatible disease manifestations are observed but EM is lacking, diagnosis is assisted by laboratory tests.

Most commonly used are serologic tests such as an enzyme-linked immunosorbent assay (ELISA) for antibodies to the spirochete. Currently, a recommendation has been made for the use of the Western immunoblotting to confirm any positive result.

Recently, polymerase chain reaction technology has been introduced. In Europe, Quality Standards for Microbiological Diagnosis of Infectious Diseases have been developed on behalf of the German Society for Hygiene and Microbiology (DGHM) and published as in MiQ 12 2000.

Nonetheless, a reliable and widely accepted diagnostic laboratory standard is still not in place. At the Aeskulap Klinik in Switzerland, we recommend both the ELISA and the Polymerase Chain Reaction tests. Each patient is tested prior to therapy, and approximately 6 weeks after the last day of treatment.

A negative Polymerase Chain reaction for Borrelia (after therapy) indicates complete clearing of the infectious agent.

[Commentator: I would place no confidence in the PCR. Absence of spirochetes should be demonstrated with the Rapid Identification of Bb (RIBb) test. It uses fluorescent antibodies which attach to the Lyme spirochete.

For reference, I'm repeating the following information for obtaining the RIBb test:

JoAnn Whitaker, M.D.
Bowen Research and Training Institute, Inc.
P.O. Box 627
Palm Harbor, Florida 34682
Tel: 727-937-9077
Fax: 727-942-9687
Bowen Research & Training Institute
bowanresearch@earthlink.net]

CONVENTIONAL TREATMENT: ANTIBIOTICS

A variety of antibiotics show good in vitro activity against B. burgdorferi. These include several third-generation cephalosporins and the macrolides. Tetracyclines, particularly doxycycline, are also widely used. Quinolones are less active than other antibiotics in vitro.

Many studies of antibiotic therapy for LD have been performed over the last 2 decades, in both the United States and Europe. Most of these trials have involved adult patients and have focused on specific clinical manifestations, such as EM and aseptic meningitis.

Most current published recommendations are derived from available literature and from expert opinions. Important considerations in selecting an antibiotic for a given patient are clinical symptoms and signs, as well as, organ system involvement. For example, more aggressive therapy with parenteral antibiotics is recommended for brain involvement or third-degree heart block, while early localized disease may respond to a course of oral therapy.

Unfortunately, chronic or persistent Lyme disease is often resistant to any form of antibiotic therapy.

CLINICAL MANIFESTATION:

Early localized disease

USUAL TREATMENT:

Doxycycline(PO)

ALTERNATIVE AGENT:

AmoxicillinCefuroxime axetil Macrolides (erythromycin, clarithromycin, azithromycin)

CLINICAL MANIFESTATION:

Early disseminated disease. No brain involvement, no more than first-degree heart block

USUAL TREATMENT:

Doxycycline

ALTERNATIVE AGENT:

(PO)Amoxicillin axetilCefuroxime

CLINICAL MANIFESTATION:

Macrolides With brain involvement, symptomatic carditis, PR interval greater than.3 s, or second- or third-degree heart block

USUAL TREATMENT:

Ceftriaxone (IV)

ALTERNATIVE AGENT:

Penicillin G (IV), Doxycycline (IV or PO)

CLINICAL MANIFESTATION:

Late disease Arthritis

USUAL TREATMENT:

Doxycycline(PO)

ALTERNATIVE AGENT:

Amoxicillin Ceftriaxone (IV), Penicillin G (IV)

CLINICAL MANIFESTATION:

Brain involvement

USUAL TREATMENT:

Ceftriaxone (IV)

ALTERNATIVE AGENT:

Penicillin G (IV), Doxycycline (IV or PO)

One axiom substantiated by clinical experience: timely and accurate diagnosis and appropriate treatment have a clear influence on response to therapy.

CHRONIC or PERSISTENT Lyme disease

Persistent or Chronic Lyme Disease (CLD) is not only challenging to diagnose but is frequently difficult to manage. Likewise, appropriate treatment of patients who have persistent symptoms (e.g., cognitive impairment, arthritis, musculoskeletal pain, etc.) following therapy for LD has been controversial.

Recovery of viable spirochetes from spinal fluid despite aggressive intravenous antibiotic therapy underscores in vivo resistance of B. burgdorferi to antibiotics.

Further, difficulties in accurate diagnosis of CLD have been either associated with no therapy, or prolonged and often inappropriate therapy, both of which contribute to significant patient morbidity.

Millions of people suffer from persistent or CLD. These individuals exhibit complaints of memory loss, mental/cognitive problems, severe fatigue, fibromyalgia, symptoms of multiple sclerosis, heart problems, arthritis, etc., etc. CLD is often misdiagnosed as; ALZHEIMERS DISEASE, MULTIPLE SCEROSIS, RHEUMATOID ARTHRITIS, CHRONIC FATIGUE SYNDROME, CHRONIC ANXIETY, AUTOIMMUNE DISEASE, etc.

INADEQUACY of CONVENTIONAL THERAPY

Antibiotic therapy for patients with chronic or persistent LD is problematic and oftentimes ineffective because the spirochete invades the brain, tendons, heart and muscles. The intracellular localization of Borrelia spirochetes in such tissues, especially fibroblasts, makes treatment and cure difficult.

Double blind studies have confirmed the ineffectiveness of antibiotics in chronic or persistent Lyme disease, Klempner MS, Hu LT, et al., Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001 Jul 12;345(2) :85-92

[Commentator: Klempner seems to be trying to prove that the subjects of his study do not have Lyme Disease, despite their symptoms. The antibiotic treatment provided by Klempner has been seriously questioned. That this Swiss promotional literature uses Klempner for its own purposes makes me very suspicious.

NOTE: Klempner's studies have NOT "confirmed the ineffectiveness of antibiotics in chronic or persistent Lyme disease."

Antibiotics are essential for controlling Lyme Disease and maitaining the functionality of the victim, even if no antibiotic so far is a cure.]

HEAT and LYME DISEASE

Spirochetes of Lyme disease (Borrelia burgdorferi) cannot survive when exposed to increased temperatures over specified periods of time. The Lyme disease spirochete is heat sensitive and will die on exposure to temperatures of 39 C for 5 hours, 40 C for 3 hours, and 2 hours at 41 C.

The Nobel Prize was awarded in 1929 to an Austrian physician who successfully treated another spirochete (Treponema pallidum, the spirochete that causes Syphilis) with Malaria to induce high fevers.

It is therefore not unexpected that attempts to treat Lyme disease with Malaria have been proposed by physicians and even tried by patients, Heimlich HJ, Should we try malariotherapy for Lyme disease? N Engl J Med 1990 Apr 26; 322(17) : 1234-1235.

This approach has not been accepted. In addition to ethical challenges, malaria itself may be fatal.

While medical experts concur that heat is effective against Lyme disease, there is also a consensus that artificially induced fevers and other heating methods (e.g. infra-red lamps, ultrasound, extra-corporeal and other external methods) are inadequate, unpredictable and possibly dangerous.

Such external hyperthermic methods attempt to heat infected cells from the "outside-in". They cannot effectively heat deep targets in the body (e.g. bone marrow, brain, etc.). Moreover, excessive external heating can cause toxic thermal gradients resulting in damage to normal tissue.

Intracellular Hyperthermia Therapy (ICHT)

Intra-Cellular Hyperthermia Therapy (ICHT) is a patent pending, novel method that causes cells to be heated from the "inside-out".

ICHT methodology is based on uncoupling of oxidative phosphorylation. An uncoupling agent is administered so as to create a futile "short circuit" by shuttling protons back into the mitochondrial matrix (mitochondria are energy producing organelles within the cell that utilize 95% of all oxygen).

The short circuit increases heat production at the expense of useful energy. The shortfall in energy production is compensated by increased glucose, reducing equivalent and oxygen utilization. The uncoupling agent used in Intra-cellular Hyperthermia Therapy is lipophilic, and is thus able to penetrate every cell in the body, including those in the brain.

The net result of ICHT uncoupler therapy causes the mitochondria to be converted from efficient "powerhouses" of energy production to "chemical furnaces", heating cells from the "inside-out". The Lyme spirochetes are subjected to such an amount of heat over a prescribed time that they cannot survive. In essence, ICHT maybe considered a form of therapeutic "pasteurization".

ICHT, an effective treatment for LD

Intracellular hyperthermia represents a practical, effective cure for chronic (or persistent) Lyme disease. The efficacy of uncoupler-induced intracellular hyperthermia therapy against Lyme disease is established with "before and after" blood PCR (polymerase chain reaction) tests. A negative PCR test for Borrelia DNA indicates direct clearing of the pathogen.

ICHT at Aeskulap Klinik in Switzerland is initiated with a thorough patient history and physical exam by an interdisciplinary medical staff. Special attention is given to Cardio-pulmonary and physiologic status. State of the art oxygen consumption equipment is used to monitor the amount of oxygen and heat generated by ICHT. After establishing a baseline level of oxygen consumption, ICHT is optimized for each patient.

ICHT is only available in Switzerland at the Aeskulap Klinik. Aeskulap Klinik is a leading cancer and alternative medicine treatment center, which combines traditional and alternative medicine into a proven and effective holistic approach.

At Aeskulap Klinik (a Private Hospital), the patient may also choose to follow one or more additional holistic treatments and therapies offered.

Contact us at: Brigit Kaik, RN Medical Coordinator AESKULAP KLINIC CH-6440, Switzerland Tel: +41(41) 825-4747, Or Tel: +41 (79) 541-7285 Fax: +41 (41) 825-4700 E-mail: Phinixintl@aol.com ''

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A Commentator wrote:

``I just wanted to drop a note and say I think the Lyme community has a special opportunity here for the American public to understand us better using the context of the times. Think of the following ad in a magazine...

"Imagine the following:

You have tested positive for Anthrax;

You are clearly showing symptoms;

You live in severe pain and yet some doctors are telling the world your disease isn't serious when in fact it is deadly.

They claim you have a 'syndrome' and that you aren't really sick after receiving a tiny fraction of the Cipro you really need.

Insurance companies refuse to pay for your Cipro because of the lies these doctors are telling.

The CDC downplays the real danger of Anthrax because they don't want to cause an alarm in the public, even if they should be warned.

On top of all that, your doctor is having his or her license revoked because he is saving people with the correct dose of Cipro, thus proving the liars wrong.

Scared? Angry? Frustrated?...

...Welcome to the life of a Lyme Disease patient. There are thousands of us.

Remember, getting bit by a tick is as easy as opening an envelope." ''

NEWS FLASH from ellenlu@webtv.net, 10-23-01

``We are extremely happy to be able to make the following announcement.

After more than a year of letter writing, lobbying and political meetings we have accomplished our goal of having public legislative hearings into the OPMC's dealings with physicians who treat chronic Lyme disease. [OPMC is New York State's Office of Professional Medical Conduct.]

1) NOVEMBER 27, 2001. The Assembly will hold a public legislative hearing on the Lyme Disease controversy on November 27, 2001. The meeting will be in Albany, and we will let you know the exact time and place as soon as we know it. Invitations to speakers are being issued by the legislative committee. The public will be welcome to view the hearings, and we hope many Lyme patients will be able to attend.

2) DECEMBER 4, 2001. There will be a public legislative hearing on OPMC procedures. This, too, will be in Albany, with the time and place to be announced shortly.

These hearings are a major event for the Lyme community which has organized and worked together to stop the attempts of the OPMC to take away our medical care. Thank you to all of you who have written letters, lobbied, and raised funds for the legal defense funds. We said we would not go away, and it is paying off.

ASSEMBLY COMMITTEE ON HEALTH

Richard N. Gottfried, Chair

NOTICE OF PUBLIC HEARING

SUBJECT: Chronic Lyme Disease and long-term antibiotic treatment.

NEW YORK CITY

Tuesday, November 27, 2001, 10:00 a.m.

Assembly Hearing Room, Room 1923

19th Floor, 250 Broadway

The nature and treatment of Lyme disease is controversial. Lyme disease, when diagnosed early, is ordinarily a short-term disease treated effectively with a short-term course of antibiotics.

However, some physicians contend that Lyme disease can also persist, despite short-term treatment, as a chronic disease for which long-term antibiotic treatment is appropriate. Some physicians contend that this view is invalid.

The medical controversy has given rise to disputes about insurance reimbursement and allegations of professional misconduct. The purpose of this hearing is to explore the validity of these contending positions.

Persons wishing to attend or present testimony to the Committee at this hea ring should complete and return the enclosed reply form as soon as possible.

It is important that the reply form be fully completed and returned so that persons may be notified in the event of emergency postponement or cancellat ion of the hearing.

Oral testimony at this hearing is by invitation only. People wishing to be invited to testify should contact the Committee as soon as possible.

People not presenting oral testimony are welcome to submit written testimony, which will be made part of the record of the hearing.

Oral testimony will be limited to ten minutes' duration. All testimony will be under oath. In preparing the order of witnesses, the Committee will attempt to accommodate individual requests to speak at particular times in view of special circumstances. These requests should be made to Committee staff as early as possible.

Ten copies of any prepared testimony should be submitted at the hearing reg istration desk. The Committee would appreciate advance receipt of prepared s tatements.

In order to further publicize these hearings, please inform interested parties and organizations of the Committee's interest in receiving testimony from all sources.

In order to meet the needs of those who may have disability, the Assembly, in accordance with its policy of non-discrimination on the basis of disability, as well as the 1990 Americans with Disabilities Act (ADA), has made its facilities and services available to all individuals with disabilities.

For individuals with disabilities, accommodations will be provided, upon reasonable request, to afford such individuals access and admission to Assembly facilities and activities.

ASSEMBLY COMMITTEE ON HEALTH

Richard N. Gottfried

Chair

PUBLIC HEARING REPLY FORM

(PRINT AND FAX)

SUBJECT: Chronic Lyme Disease and long-term antibiotic treatment.

Persons planning to attend the public hearing on Lyme Disease and antibiotic treatment are requested to complete this reply form as soon as possible and mail or fax it to:

Lara Kassel

Legislative Associate

Assembly Member Gottfried's office

822 Legislative Office Building

Albany, NY 12248

518-455-4941

Fax: 518-455-5939

[ ] I plan to attend the public hearing.

[ ] I will require assistance and/=

or handicapped accessibility information. Please specify

the type of assistance required:

______________________________________________

______________________________________________

NAME:_________________________________________

TITLE:________________________________________

ORGANIZATION:_________________________________

ADDRESS:______________________________________

TELEPHONE:____________________________________

EMAIL:________________________________________

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A Commentator wrote:

It has been very scary, hasn't it - watching the Two Beacons of Lyme Disease Treatment under attack by the Treatment-Ban Terrorists?

It was so shocking to watch the devastating attacks on the Two Beacons of Lyme Disease Treatment, Drs. Burrascano and Doctor Orens.

I know one family that took a full hit on this - every member was being treated by one of these two doctors.

These Two Beacons between them served a wide number of patients, often staying in their offices, windows shining late into the night, and then when they were finished, sitting down -- to start returning calls from even more sick Lyme people in many different states and even some other countries.

Both were also seeing children and adolescents, which many LD's prefer not to treat and send "elsewhere" as if that is a for=real place!

These Two Beacons were both hit in 1999. The First One went down the Day Before Thanksgiving. Think about that this year in another week, Wednesday November 21st, as you are contemplating Thanksgiving the next day, perhaps planning the menu or the meal somewhere else.

Think about what it would feel like to be Dr. Orens taking the medical license off of the wall and wrapping it up to send back to OPMC after 40 years of treating patients - thinking about putting it up 40 years earlier with so much love and pride - - and your heart breaking to take it down with still so many sick people on your list needing treatment.

Patients left with PICC lines in, in the middle of IV, were left with no treatment and had to have the lines yanked in the emergency room (true story). Children were left without a doctor and deteriorating from lack of treatment as their parents frantically made call after call, only to be turned away.

The assault on the Second Beacon of Lyme Disease Treatment was a heartwrenching blow to all of us because this one was the one with the Beacon of Hope shining brightly in all directions.

Many patients were receiving treatment from other doctors according to the Light this doctor had shed on ways to treat, ways to keep the patient more healthy, ways to enable the recovery and more.

When this Beacon was hit, we all screamed and cried in shock, anger and disbelief. The Fallout has been occurring ever since.

As we look back, we can divide our time with Lyme Disease up in two periods - Before - and After these Two Beacons were hit.

Before - I had a Lyme Doctor, although I was not seeing either one of these Two Beacons.

After - my doctor, and others, were no longer treating Lyme Disease.

I was left without treatment, I deteriorated, I looked at my young children every day and wondered How Much Longer?

We have a chance to support and resurrect the Two Beacons of Lyme Disease Treatment in two important ways - and have a shot at restoring them to some semblance of what what they were so that a Beacon of Hope can shine once more.

But its going to take All Of Us.

Lyme Disease People are going to have to form their own Emergency Squads and come in from many different counties and States to help resurrect these Two Two Beacons of Lyme Disease Treatment by showing up for the Albany legislative hearings on November 27th [2001].

It is going to take All Of Us to rescue so many of us.

If it is at all possible, please get on the Emergency Squad with us and Ride to Albany. Whatever happens in has the potential to happen in your state too. What is it going to be?

Its Up To You!

The second thing we all can do to rebuild these Two Beacons of Lyme Disease Treatment is to donate to their Defense funds.

It is so important to keep this ability to meet the legal expenses in place - we are getting the "easy part" of it by simply finding a way to donate or raise funds.

The hard part is being the person who has to undergo the experience, if you are one of these Two Beacons. These doctors are doing it for US, so that we can continue to get treatment in and other places.

We need to Rescusitate those Defense funds. The addresses are listed at the conclusion here. Pump them up once more!

If it is at all possible, please donate to the Legal Defense Funds, and Please, Lyme People, get on the Lyme Disease Emergency Squad with us and Ride to Albany on November 27th. Whatever happens in New York has the potential to happen in your state too. What is it going to be?

Its up to YOU!

Don't let the Treatment-Ban Terrorists reign victorious over our Two Beacons of Lyme Disease Treatment!

Its Up To YOU!

Dr. ORENS: Checks can be made out to Dr. Orens' attorney, Asher Fensterheim, with "Orens Defense Fund" written in the memo section.

Please send to: Asher Fensterheim, Esq. 555 White Plains Road, Tarrytown, NY 10591

DR. BURRASCANO: Burrascano Legal Defense Fund, c/o Monica Miller, PO Box 410, Kinderhook, NY 12106

LYME PATIENTS RALLY TO REFORM THE OFFICE OF PROFESSIONAL MEDICAL CONDUCT

Professional Discipline System is being used to Suppress Scientific Debate and Punish Dissenting Physicians

Voices of Lyme and the Foundation for the Advancement of Innovative Medicine (FAIM) accuse the The New York State Department of Health, Office of Professional Medical Conduct (OPMC) of using their police power to prosecute and silence one side in a scientific debate.

This debate far from being resolved by the general medical/scientific community. OPMC has brought charges of misconduct against Joseph Burrascano, MD and Richard Horowitz MD.

Dr. Burrascano is the author of a protocol which sets forth guidelines for the treatment of Lyme disease in situations where the illness has not responded to short- term antibiotic therapy. A synopsis of this protocol was published in 1997 in the mainstream peer-reviewed medical publication Conn's Current Therapies.

Dr. Horowitz is a leading advocate of the theory that tick-born Babesiosis and Ehrlichiosis pose as serious a threat to New Yorkers as Lyme Disease.

Also at issue is the accuracy of diagnosing these diseases because no currently available single test is totally accurate in affirming infection in all cases, nor confirming cure. Lyme disease is a growing epidemic fostered by the recent warm winters, and the geographic spread of the deer-tick population.

With no single scientifically validated method for diagnosis or treatment, FAIM and Lyme patients nationwide question why any state health department would enforce select practice methods to the exclusion of other viable options. The scientific debate should be settled in the scientific community but not by OPMC.

Thank you so much to all of you who contributed to the Dr. Perry Orens Legal Defense.

We are fighting to save our doctors so that we can save our own lives.

Checks can be made out to Dr. Orens' attorney, Asher Fensterheim, with "Orens Defense Fund" written in the memo section.

Please send to:
Asher Fensterheim, Esq.
555 White Plains Road
Tarrytown, NY 10591 ''

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