What follows is a transcription of a Boston Herald article by Michael Lasalandra. It outlines a patient protest concerning the National Institutes of Health (NIH) honoring Dr. Alan Steere during its "Astute Physician" program.

This is followed by reader comments in Mr. Lasalandra's Guestbook. They have been preserved here, since the Guestbook has finite resources; Mr. Lasalandra writes regularly for the newspaper, "old" entries roll off and are lost. Hence, we are saving the responses with some permanence.

Intensity of emotions are the property of the originator, but shared with the same passion by many.

Wednesday, November 3, 1999

A renowned Boston doctor who is credited for naming Lyme disease in 1978 is expected to run into a group of hostile patients when he gives a talk on the illness today at the National Institutes of Health.

Members of the Lyme Alliance, a group of activist patients, say they will protest Dr. Allan Steere's talk, claiming his conservative approach to treatment discredits them and the doctors who believe them.

"He's giving a talk as part of a series honoring people for being astute clinicians, and that's really a slap in our faces,'' said Ellen Lubarski of New York City.

The protesters say Steere's guidelines for diagnosis and treatment of the illness are "obsolete, biologically unfounded and ethically suspect.''

Steere, of New England Medical Center, says Lyme Disease is being overdiagnosed and overtreated. He says it can be cured fully with four weeks of antibiotics.

But members of the Lyme Alliance believe the Lyme bacteria can linger in the body, causing problems for years, and that such patients must be treated with powerful antibiotics for months, years or even a lifetime.

They say Steere's emphatic opposition to the possibility of lingering illness has caused their insurance companies to refuse coverage and say that his testimony against their doctors before medical licensing boards has caused some of them to stop giving aggressive treatments.

Steere's 1993 paper, which claimed the disease was being overdiagnosed and overtreated, "was the turning point,'' Lubarski said. "The insurance companies jumped on it.''

Rita Stanley, a patient from Portland, Ore., said doctors who prescribe long-term antibiotic treatments are being harassed "by Steere and his cronies.''

She noted Steere testified at a hearing against a Michigan doctor who ended up being disciplined for mistreating patients and for fraud based on allegations he took money from insurance companies by falsely diagnosing patients with Lyme disease.

John Coughlin of Mashpee, state coordinator of the Massachusetts Lyme Disease Coalition, said many patients who plan to attend the protest "have gone to (Steere) and have been told they don't have Lyme Disease, only to find out afterwards that they do.''

A delayed diagnosis, he said, "is a big problem. If you don't get treated right away, it gets into your central nervous system and becomes difficult to eradicate.''

Steere's talk today on Lyme arthritis is part of the NIH Director's Astute Clinician Lecture series, established to honor an American scientist who has observed an unusual clinical occurrence and by investigating it has opened an important new avenue of research.

That occurred in the 1970s when Steere, then a rheumatology fellow at Yale, looked into a cluster of juvenile rheumatoid arthritis cases in Lyme, Conn., and eventually showed that the illness was the result of a tick bite.

Steere said this week that the criticism directed at him is based on politics, not science. "It's not rational,'' he said.

He said he is rigorous about requiring scientific evidence for the diagnosis of Lyme Disease and said there are people sick from other illnesses that persist in saying they are Lyme victims.

While some patients may have persistent pain and fatigue syndromes after their treatment for Lyme Disease, he said, "my experience is that those pain and fatigue syndromes can be treated more effectively in other ways'' than with antibiotic therapy.

He said his opinion is in step with the Infectious Disease Society of America and with the majority of the studies on the illness.

Concerning his testimony against the Michigan doctor, Steere said he was asked to do so by the state's attorney general and said he joined a number of Michigan doctors.

Public Guest Book responses:

Thank You For Signing The Guestbook

Thank you for filling in the guestbook. Your entry has been added to the guestbook.

The principal author of the Nantucket Lyme study sounded a lot more sympathetic in your article than in the scientific article published in Annals of Internal Medicine. Their conclusion was that the outcome for these Lyme sufferers was good, because the tests did not show otherwise. My question is whether those tests would be used to evaluate the outcome of any other infectious disease. I doubt if they would be applied in the case of TB or syphilis. The researchers (and a lot of doctors these days) seem to think that patients cannot be believed so they make up these (sometimes very silly and inappropriate) tests to appear objective. If it can't be measured in a test, it doesn't exist! They don't question the merits of this kind of testing. Furthermore, the Nantucket study was biased toward the Steere point of view. As you will recall, this man is anethema to people with chronic Lyme. I say the Nantucket study was biased because at least 3 of the co-authors have previously collaborated with Steere. Of the Lyme related studies in the reference section, more than half were authored by Dr. Steere. Three more were on the subject of "post-Lyme syndrome." This is what the Steere people call continuing infection and they say it doesn't respond to treatment. Not a single reference was to any of the studies which show the spirochete being found after treatment. And finally, Dr. Steere is thanked for reviewing this manuscript! I doubt if the people of Nantucket Island are thankful about the results of this study. It is a disgrace that our government health institutions keep sending all the research funding to the Steere camp.
lou <overman74@hotmail.com>
- 01/03/00 14:17:04 EST

What silliness!!!And that includes eveyone involved:Dr. Levine, Mayo Clinic,NEJM,and you for making a mockery of your pulpit
Joel A Saperstein MD <Sapmd@yahoo.com>
- 12/30/99 13:53:36 EST

I've just been sitting here reading some of the comments.I have been comp illiterate also.Ive had lymes for 2 yrs. after being hospitalized with menengitis when they figured it out. well it is not gone but noone will listen.I'm currently looking for a dr.who will hear me.This is insane what is it going to take.people are dying and no one will help us. They are treating us for all kinds of other aliments but not for what is really wrong.God Help Us!
rainbow <rainbow2ld@aol.com>
- 12/28/99 21:20:58 EST

Dear Mr. Lasandra: I am a victim of Lyme disease and Dr. Steere. In 1984 I moved from Staten Island, New York to California. Before moving from New York, I had developed flu, join pain y many other simptoms. I had many diagnosis mainly connective tissue disease and since Lyme patients taste positive for R/A, I was finally dignosed with it. In 1989 I saw a program in 20/20 describing Lyme, there it was a rash exactly like the one I had back in 1984, what my room mate had calle a "hikey" because it was it in my neck. I started to read as much as I could about Lyme,and then, just as you do now they credited Dr. Steere with discovering this disease when in actuallity all what he did is recognized what the Europeans already knew. I called his office to get an appointment to see him. It was impossible for me to find a doctor that even heard about this disease. He will not give me an appointment unless a doctor had already "dignosed the illness", however, he was kind enough to referred me an specialist in Lyme here in California. I was happy to find a doctor that knew about Lyme. When I called this doctor's office I was told to bring all my records so Lyme could be RULED OUT. It was ruled out. I had no doubt that this doctor had written, as his office stated, articles about Lyme but surely he was not interested to learn about this disease. Now that I attend a support group for this disease I met another disable person who was diagnosed by this same doctor as not having this disease. I was computer illiterate until last year when I got into the internet. I thought I was going out of my mind. I did not understand why I could not find a doctor to help me. I did not know that Lyme doctors are obstracized, ridiculed and persecuted. Most of these doctors had been themselves, or very close member of their families victim of this disease. I thought I was the only person that I went thru that brain wash from all those doctors, I thought that just because I have an accent they had that attitude, no, all tha Lyme victims go thru the same thing and there are thousands of us. Read Personal Stories in the internet. From being a hard worker tax-payer citizen, I became a disable tax-user person. In March 1998, I got so sick with is called "trombocytophinia", in order to save my life, I was told, they had to take my spleen out, they did. Read the New England Journal of Medcine of July 15, 1999. The skeptical doctors they still insist I have R/A because I tested positive for it and I have the similarities of it. I only know that now thru the internet, I finally have found a doctor treating me with megadosage of antibiotics, my arthritis is dissapairing and I am starting to live again. I am olny affraid that my doctor like other Lyme doctors sooner or later would become a target and become persecuted. Do we live in a democracy? It is unforgivable how this illness have become politicized.
Myrna Vallejo <myrva@yahoo.com>
- 12/28/99 02:24:37 EST

When I read this article I knew I had seen this sort of Borrelia Spin (BS) before here in Southeastern CT. I laughed the first time I saw it. We *patients* exposed the fact that these Rheumatologists screwed up the vaccine by recommending the only thing that they have been able to marginally substantiate as the source of causing a potential autoimmune disease, the vaccine, OSP A, or LYMErix. So now they are going public with the information. What a laugh. This article is part of that whole spin campaign. They screwed up the Lyme vaccine, now they are trying to cover their asses. We also knew these Rheumatologists were trying to sell (spin) Lyme disease as an autoimmune disease to pharmaceutical companies. Pharmaceutical companies LOVE autimmune diseases because the treatment is chronic use of antiinflammatories. For every new autoimmune disease, dollar signs shine in the eyes of the new drug development team managers, as well as the stock holders. Antiinflammatories are the bread and butter of Pharmaceutical companies. It is not "pain" that disables us. It is the chronic Lyme meningitis, a somatic symptom set like the flu, and various inflammed and damaged nerves from a spirochetal illness for which these Rheumatologists, like Allen Steere, have no concern to cure us. Should there be a cure for chronic Lyme disease, or chronic spirochetal illnesses, Steere and his friends would run out of free NIH money to run rampant over the planet patenting new tick-borne diseases and diagnostic kits to test for them. It (money) is the motive to spin this disease as a either an autoimmune disease or as a character flaw, and not a real illness. Steere spends time in Russia now, and other European countries should be wary of his activities. He seeks only to exploit their populations, not to cure their people. The NIH condones this and is as guilty of this human rights violation as Allen Steere and Dr. Steere's friends in the American Lyme Disease Foundation (not to be confused with the real Lyme Disease Foundation). The disability of Lyme disease is caused by the manifestations of a spirochetal illness that affects the nervous system, just as syphilis does. There is no cure for it. The NIH does not fund people interested in discovering a cure for it. A country not attempting to treat its citizens for an epidemic of a chronic disabling illness is an international human rights violation. Proclaiming to the world that we chronic Lyme patients have a character flaw will (stating that chronic pain is the source of our disability) is discriminatory- also a human rights offense. This spin campaign will not succeed. The truth will come out. The NIH is responsible for this deception and it will be for the countries of Europe to recognize the threat these American scientists pose to the health of their people. It is a human rights violation to deny people antibiotics for an infection. It is a human rights violation, as a physician, to avail one's services to perform independent medical evaluations for insurance companies when the outcome is predictably "No further antibiotic treatment needed" Physicians who perform this service are the paid whores of managed care. If there was actual intelligent life within the insurance industry they would see that they will have to pay and pay and pay for this disease, one way or another and Steere's spin of it is not helping their financial future, no matter how they interpret it. Either they pay for antiinflamatories or antidepressants or long term diability, etc,.. whatever. Insurance companies will pay for this disease. They should be petitioning the NIH to find a cure for Lyme disease... It is unethical for LifeSpan Insurance company to be involved in Allen Steere's Chronic Lyme study, when it is in the interest of the insurance company to not treat Lyme disease with expensive antibiotics. Steere's study is destined to conclude that antibiotic treatment of seronegative (negative blood test) Lyme is experimental and therefore should not be paid for. His study only includes seropositive Lyme patients. Patients with Lyme disease test negative about half the time. This study was designed from the outset to serve the desired results of LifeSpan -- not to treat patients with the best available care for for an illness- a human rights violation.... It is not "pain" that disables us. It is the neurological symptoms which are by no means subtle - the results of Lyme encephalopathy is similar to Alzheimer's disease - that disable us. For any physician to buy into anything Allen Steere has to say, or participate with him in any of his vaccine trials or other studies about Lyme disease is to invite future indictment for human rights violations. Guaranteed. Ask these Rheumatologists do for their own patients? Patients with Rheumatoid arthritis? They are able to help them very little. All of their treatments are empirically derived, just as Lyme has been all these years, by trying various antibiotic treatments to find one or a set that kill most of the spirochetes. Look at what these Rheumatologists do in their own specialty. They do nothing. Besides, patents for new vector-borne pathogens and diagnostic test kits come along more readily than anything they have been able to discover in Rheumatoid arthritis. Lyme disease is a gold mine for them - the health and wellbeing of others are dispensible. If they can spin Lyme disease to the public, anyone can spin any disease to effect the swelling of their personal fortunes. These US Patent Hounds are a scary bunch. If it takes international pressure to bring about a correction in the spin of this disease, so be it.
Kathleen M. Dickson <kathleen.dickson@snet.net>
- 12/26/99 15:21:37 EST

Michael - Your work re LYME is very much appreciated. I understand you are merely "reporting" this study and this Dr.'s findings. It would seem, however, that you have a responsibility to see if the LLMDs - - Donta et al - - have anything to say vis-a-vis the findings of this study.
treatedbutstillinpain <shct99@aol.com>
- 12/23/99 10:35:30 EST

Thank you for your latest article on Lyme disease. It is interesting that if patients are treated with antibiotics for longer than the conservative 4 weeks, that improvements in pain, cognitive function and other problems with this disease are seen. If patients still show continued symptomology following this so-called curative therapy, it is very likely they have persisting disease. No studies have ever ruled this out; the researchers have only "declared" that persistance of infection does not exist. This is unacceptable, and the conclusions drawn from such research are not only ethically suspect and faulty extrapolations but lousy science. Rita L. Stanley, Ph.D.
Rita Stanley, Ph.D. <ritastan@worldnet.att,net>
- 12/22/99 23:25:00 EST

I would like to comment on the article regarding pain and Lyme Disease. I live in TN where Lyme "does not exist" (ticks don't cross the state lines you know). I contracted Lyme here, and I went through a ridiculous and unnecessary amount of heartache to get diagnosed. I now must travel out of state to get the treatment I need. A lot of time was wasted--time I could have been receiving treatment instead of becoming increasingly ill. I never knew anyone could experience such intense pain on a daily basis and still wake up the next day. When I recently got my prescription filled, the new pharmacist was appalled at the price of the antibiotics I take. When I told him it was all because I was bitten by a tick, he told me a story that both breaks my heart and makes me determined to educate people about the very real and serious threat of Lyme Disease. His lifelong friend's 19 month old daughter just died. They found a tick embedded in her hairline. This poor baby, too young to speak, had bullseye rashes over her hands and arms (as you know only about 50% of people with Lyme get the rash), and still no one knew what was wrong! Her pain did not persist, it died with her. She died due to ignorance. She died because she was bitten by a tick, and no one knew the obvious signs of Lyme Disease. I believe health practitioners are afraid to admit that Lyme Disease is a growing public threat. I think they believe if they ignore it, it will go away. The only thing going away are the lives and health of too many people. Who else must pay the ultimate price before this is taken seriously?
Mary Ann <ko_@bellsouth.net>
- 12/22/99 21:18:34 EST

Response to: Pain persists in treated Lyme patients. Another quote from the CDC "New, Reemerging, and Drug-Resistant Infections.... The AIDS pandemic and a host of "new" infectious diseases, such as Lyme disease and Escherichia coli O157:H7 infections, have affected millions of people. The incidence of a number of serious diseases (including malaria, cholera, and tuberculosis that were once under control in many parts of the world) is increasing. Illnesses whose causes have not been understood (e.g., peptic ulcer, cervical cancer, Kaposi's sarcoma) appear to result from microbial infection. New or reemerging infectious diseases, such as hantavirus pulmonary syndrome and hemorrhagic fevers (e.g., Ebola, Lassa, and dengue) continue to pose threats. Foodborne diseases are increasing because of changes in food sources, processing, transportation and diet. Infections caused by drug-resistant organisms prolong illness, and if not treated in time with expensive alternative antimicrobial agents, can cause death. New or increasing drug resistance has been recognized in organisms that cause malaria, tuberculosis, gonorrhea, pneumonia, middle ear infections, diarrheal disease, and hospital-acquired infections.
Jeff <jaj123@netzero.com>
- 12/22/99 20:44:06 EST

Response to: Pain persists in treated Lyme patients I don't get it! And neither do a lot of others! If Lyme Disease can be cured so easily then why does the CDC (Center of Disease Control) have so many references to Lyme Disease being a dificult disease to treat and mention Lyme Disease in the same sentences as AIDS????? Read a sample from the CDC website below: "Infectious diseases are a continuing menace to all people, regardless of age, gender, lifestyle, ethnic background, and socioeconomic status. They cause suffering and death and impose an enormous financial burden on society. Although some diseases have been conquered by modern advances, such as antibiotics and vaccines, new ones are constantly emerging (such as HIV/AIDS, Legionnaires' disease, Lyme disease, and hantavirus pulmonary syndrome), while others reemerge in drug-resistant forms (such as malaria, tuberculosis, and bacterial pneumonias)."
Jeff <jaj123@netzero.com>
- 12/22/99 20:36:29 EST

Thank you Michael for doing another story about Lyme, I appreciate it!! And it's very true. I am a 10 yr. Lyme patient and although I am not sick all the time, when I get flares one of the worst things is the arthritis so it was nice to read that others also have the same problem. Thank you again for the Lyme articles!!
Jean An <jeand@tisd.net>
- 12/22/99 14:01:36 EST

The testing sensitivity and the diagnosis, based upon testing is the key. I was a lymerix vaccine participant and so were many people on Nantucket. I was asymptomatic and tested negative according to CDC and Doctors in charge of the "study" and then became so.. very ill I almost DIED! They look the other way when you begin to report problems occurring with the "study". None of the information is unbiased. I have NOTHING to gain by disclosing this information, but all the doctors would be exposed, God forbide, and so much time and $$$ has gone into this. They can't afford to be caught lying , not NOW! Please understand that medicine ISW a business and people with letters behind their names have lots of power! LL
Lynn Lane <bljst@aol.com>
- 12/22/99 12:52:13 EST

How may I read on-line or otherwise your article on Nov. 3rd re a Lyme disease protest, along with letters to the editor and possibly e-mails which followed?
Ann Latimer <abclatimer@iquest.net>
- 12/14/99 16:40:37 EST

I am commenting on the Steere honored at NIH article. Are you aware that until 1980 Steere insisted that Lyme disease did not respond to antibiotic therapy and that antibiotics should not be used? Steere published that in his papers up to 1980. He is a little embarrased by that. My point is that if was so totally wrong then, why put any faith in what he says now? If you do a furture article please emphasize that Steere has a history of being wrong. He would not treat most people with antibiotics in the 1970's, and more people have been denied antibiotic therapy for Lyme disease by Dr. Steere than any other Dr. that exists.
Peter McFadden <frisbeeman@mindspring.com>
- 12/13/99 23:17:48 EST

where can i find your article on lyme disease, would love to read it, as i have also a nightmare story about being misdiagnosed,as do thousands of people. thankyou
chris teubner <cjt48@aol.com>
- 12/13/99 21:46:38 EST

I was diagnosed with Lyme Disease in August when I came down with Bell's Palsy. I am taking Suprex and lot's of herbs and vitamins. My face is almost back to normal. The Lyme is about 25% better now (December 99).
Tammie L. Rushton <TammieLR@aol.com>
- 12/11/99 19:30:45 EST

Mr. Lasalandra,

I would like to thank you again for publishing your article about Lyme disease, and the patient protest against a Dr. many LD sufferers consider the enemy.

You may not know, but following the lead of the NIH protest, there was also a protest December 8, 1999, at the NYC offices of the OPMC, concerning the harrassment and revocation of licenses for Lyme treating doctors who are not considered the enemy.

While I could not be there, some of my thoughts about that protest are a direct result of your article, and the guestbook comments it generated:

I am NOT a resident of New York State; I AM a Lyme disease (LD) sufferer. While I cannot be in NYC the day of the protest, my LD damaged heart will be with the protestors. That is why I am sending this letter early.

The reason for the OPMC protest, calling attention to the harassment and license revocation of Lyme treating physicians, has already happened here is Texas, with disastrous results. Physical, emotional and financial harm has overcome patients and physicians alike. Permanent disability is not my idea of fun. Bankruptcy of a physician’s practice affects the patient, physician and physician’s family, and any other compassionate physician thinking of including LD patients in their practice. It is a very vicious cycle that is triggered by anonymous allegations.

In the license revocation case of Dr. Perry Orens, the OPMC seems to ascribe to the antiquated opinions of a small group of the-insurance-industry-captive-specialists (hereinafter referred to as TIICS) with the opinion that:

LD is easily diagnosed and treated
LD is over-diagnosed and over-treated

This TIICS opinion is so valuable to the insurance industry that they are paid to provide that testimony; always against patients seeking treatment, and against other physicians that provide that treatment.

To the TIICS, I say BUNK!

If LD is so easily diagnosed and treated, why do LD sufferers spend an average of 5 years, and see in excess of 10 doctors before receiving diagnosis and start of treatment?

At the very basic level, LD is:

"Lyme disease is a chronic, multisystemic, neuropsychiatric, incurable disease caused by a tick bite. Lyme disease causes functional, chemical, and structural changes in the brain and affects nearly every body system. It is a cyclic disease, meaning that treatment regimes must address the ever-changing manifestations of the disease. This treatment process requires careful monitoring by a Lyme-disease specialist -- usually a neurologist or infectious disease specialist."

Misunderstandings about the patient's condition are common because often the patient "doesn't look sick," yet there numerous psychological, physiological, and brain chemical changes taking place constantly. Lyme disease can normally be treated very effectively with early detection and appropriate treatment. The patient does not have to be relegated to a life of suffering."

Without early detection and appropriate treatment, it affects joints, internal organs, and has central nervous system (CNS) involvement during the untreated progress of the disease. The TIICS will tell you most of the symptomology self-resolves over time without treatment. What they don’t tell you is that if left untreated, LD goes on to the next, more debilitating stage or cycle. It is this on-again, off-again symptomology, coupled with physician ignorance, that makes it so difficult to receive a timely, effective diagnosis. LD can mimic up to 200 other diseases.

DR. 1 – "You have rheumatoid arthritis (RA)."

DR. 2 – "Who told you you have RA? RA is incurable. You don’t have RA, you were misdiagnosed. You are better now, go away."

DR. 3 – "You have inflammation/enlargement of the heart/lungs/liver/spleen/etc."

DR. 4 – "There is no sign of current inflammation of your (you fill in the blanks.) You were misdiagnosed. You are better now, go away."

DR. 5. – "There is something wrong with your nerves or brain. How much stress are you undergoing at work and in your family life. Listen to these stress-reduction tapes. Go away."

DR. 6 – "Chill out. Take these anti-depressants. Go away."

DR. 7 – "Beats me what you’ve got. Let me refer you to another specialist. (Go away)."

DR. 8 – "Nobody can have that many symptoms. It’s got to be in your head. See a shrink. (Go away)."

DR. 9 – "I don’t give Lyme tests. I don’t believe in Lyme. Your daughter doesn’t meet the age criteria for LD (actual Dr. statement!!!!). GO AWAY, I DON’T WANT TO LOSE MY PRACTICE."

DR. 10 – "I see by your LD Symptom Checklist (http://www.angelfire.com/biz/romarkaraoke/Lymekjr.html) that it is Highly Likely/Likely/Unlikely that you have been exposed to Borrelia burgdorferi (Bb). Although LD remains a CLINICAL diagnosis, there are some tests for Bb and other co-infections that will help determine WHAT YOU DON’T HAVE."

If LD is so easily diagnosed and treated, why was so much time and tax-payor monies used to develop and market a vaccine?

If LD is so easily diagnosed and treated, why do so many of the TIICS not use the vaccine in their own practice?

If LD is so easily diagnosed and treated, why have the CDC, NIH and others spent so many years and tax-payor monies studying the chronic, long-term effects of LD?

If LD is so easily diagnosed and treated, why has TIICS-prime (Dr. Alan C. Steere) spent so much time and effort changing his position on what that treatment should be? (http://www.angelfire.com/biz/romarkaraoke/BUMSTEER.html).

When TIICS-prime was questioned by a fellow scientist about his position on LD treatment and replied in essence "…that perhaps there is an over-reliance on my opinion...", did he not publicly call to task those that have that over-reliance?

I feel that the reviewers at OPMC have failed their charter in this case. While the public at large MUST be protected from unethical and unprofessional conduct in the medical field (remember this headline?: 28,000 – 48,000 medical mistakes lead to death in hospitals annually), the reviewers MUST take the both the objective and subjective viewpoint when evaluating anonymous allegations, not "would I do this in my practice?"

As I previously stated in a recent letter to NIH:

"You must use both the objective and subjective viewpoints when arriving at your "proof":

The objective – "There is no evidence that…"
The subjective – "It cannot be ruled out that…"

You scientists go ahead and keep studying until you find the evidence you so sorely need.

In the meantime, remember that many treating physicians and patients have benefited from aggressive antibiotics treatment. This is not anecdotal.

"There is overwhelming evidence to support the hypothesis that some patients are not cured with short courses of therapy; that persistent disease can be demonstrated both clinically and in the laboratory, and that such patients in many cases respond to aggressive retreatment. One could convincingly argue that a doctor who failed to treat a patient presenting with symptoms of chronic Lyme disease might fall below the standard of care given what we now know about persistent infection and treatment failure. Until clinical trials are completed, this issue remains open for argument; in the interim, the standard of care must continue to make room for both approaches."

In other words, since it cannot be ruled out that benefit is derived from aggressive antibiotic therapy, the NIH and Dr. Astute should abstain from taking the position that just because you wouldn't treat this way doesn't make it wrong."

I, for one, call for the immediate reinstatement of Dr. Perry Orens’ medical license; I further call for an immediate investigation of the OPMC reviewers, their industry/institution affiliations, and the OPMC standards of review.

R. James Martin Euless, Texas
James Martin’s Lyme Disease Horror Story How Lyme Disease And Exploitation of ERISA Laws Can Ruin A Life http://www.angelfire.com/biz/romarkaraoke/james.html
R. James Martin <rjamesmartin@yahoo.com>
- 12/09/99 17:36:02 EST

Thank you very much for covering the Lyme Disease controversy. I hope that you will continue to explore this issue. Like so many others, I developed frightening neurological symptoms as a result of Lyme Disease. Despite two positive blood tests and two lesions on my brain, I was told (by the head of the Lyme Disease clinic at a major NY teaching hospital) that I did not have Lyme Disease because my joints were not swollen. I lived with the nebulous diagnosis of fibromyalgia/chronic fatigue syndrome for three years, all the while coping with cognitive difficulties, muscle pain and stiffness, dizziness and intense fatigue. Eventually, I had a third positive test and was treated for six weeks. Unfortunately, my symptoms only worsened during this period. Six months later, after many expensive tests (the lesions had increased in number), I found a wonderful doctor who put me on intravenous antibiotics. I improved dramatically during the five weeks they were administered, only to relapse upon completion. Over the next couple of years, I was given a number of short courses of antibiotics but was never cured. During this period, my doctor handed me an article by Dr. Steere. He explained that, according to Dr. Steere, I had developed fibromyalgia as a result of Lyme, and that further antibiotic treatment was not warranted. Nevertheless, I continued to decline mentally, so much so that I was finding it difficult to speak and follow simple conversations. My ability to work and even to read was very much compromised. Eventually, I had neuro-psych testing that proved I had become seriously impaired. I had also developed oligoclonal bands. With these results, I was able to convince my doctor that I had late-stage, chronic Lyme. I have been on antibiotics for two and a half years with remarkable results. Unfortunately, I cannot miss a dose without feeling the effects. But I am very grateful to have my mind back. Please investigate this controversy further. I have met dozens of people who are suffering terribly as a result of an initial misdiagnosis or a subsequent diagnosis of post-Lyme syndrome/fibromyalgia. In my highly endemic neighborhood, I meet people every day who continue to feel dreadful despite having Steere'sequivalent of a curative dose of antibiotics. My own experience points to the highly effective use of long-term antibiotic therapy. I do not want to see others suffer as I did. Thank you again for your coverage of this topic-
Yvonne Kosakow <kos1@earthlink.net>
- 12/03/99 23:36:08 EST

Considering the fact that I have VERY late lyme, I am really glad that a paper is covering this very volatile issue. Due to my brain damage, I get very upset with those who want tretment options only for early lyme as well as finding out that there are those mds who lose their licenses. Lyme has affected not only me but has also impacted upon my whole family. In fact there are many things about my children's childhood which are gone from my mind. Upsetting? yes. Slowly, I am learning to retrain for the damage lyme caused me. I just hope my granchildren can appreciate the few things I do have left as I have to do everything long distance now as we have moved from New England. Incidentally, NE is where I got bit initially, & I am not even sure when.
sue tiffany <quincy@datasync.com>
- 12/03/99 08:34:54 EST

In reading your article about a Lyme disease specialist, I was interested if you know the Dever Post printed an article that the National Institute of Science (check that out) reccommends that medical doctors and other health care profes- sionals be monitored more closely. If so, instead of relying on thier paperwork, could advocates or omsbudsmen be placed on site who have knowledge of conditions and have experienced illnesses and poor treatment themselves? Also, could there be free treatment for people who are not cared for correctly? Either through fines, malpractice to specific Drs, etc. What happens is Drs. hide behind hospitals, private corporations they surround themselves with, and their ultimate responsibility ends when the patient dies and the family or insurors pay the doc's the bill. Sad. Thank you for your interest, I hope, in this matter. December 2, 1999.
Lauretta Lowell <Lauretta Lowell@yahoo.com>
- 12/02/99 16:24:44 EST

I am writing to ask you to help us with lyme disease. The license of Dr. Orens being revoked is absolutely unimaginable. It is so wrong, there are so many people. I am secretary to the Michigan Lyme Disease Assoc. and also have a support group. We cannot keep up with the problems that lyme victims have. It runs the gamet from losing their health, families, homes, loved ones, jobs, ect. It is awful coming home from work so tired I can't get up my steps and then have to help others. Our phones are always full, our toll free number gets 500 to 700 calls a month. There has to be and end put this conspiracy. Yes, that is what it is. These people are ill and need understanding, not their doctors afraid of getting their license revoked. I hope you cover the protest on December 8th at 5 Penn Plaza, New York. That would be a tremendous help. Thank you for listening. Sorry if their typos, lyme brain me. By the way our organization just got a Resolution in the Michigan Congress for our educational efforts. Thank you, Connie Siese
Connie Siese <Cslyme@aol.com>
- 12/01/99 19:36:45 EST

Dear Boston Hearld, At the risk of being pretentious, here is my story involving a very political disease. There has been a protest at the NIH involving Dr. Alan Steere, an advocate of the insurance companies and the people Lyme has effected. In addition, if you are looking for people who have used the internet to find medical diagnosis and treatment, that is how I reached my diagnosis. 3 year ago I started to have problems walking down stairs. I set up an appointment with my neurosurgeon as I had a history of several herniated discs (HNP) in my back. He ordered an MRI of my lumbar and thoracic back. The MRI showed 2 new HNPs. He decided to be throe and ordered a cervical and brain MRI. The brain MRI came back plaque/artifacts demyliating disease (MS). He refereed me to a neurologist. The neurologist reviewed the MRI and believed the MRI showed artifacts. He said that even if they were plaques, the plaques were in the wrong spot for MS. He ordered an audio and visual EMG, did a spinal tap, an evoked potential test and a follow up MRI, all negative for MS. At this time (March 97) I began to surf the internet for information on MS and the neurological conditions as MS was not completely ruled out. One person on a web page (University of Georgia) recommended test and retest for Lyme disease. I asked my neurologist for a Lyme test and he ordered an ELISA blood test which was negative (this test is only 14% accurate). The symptoms slowly got worse. The neurologist did say that I had compression of the spinal cord (by MRI and evoked potential) and recommended surgery. I had a micro discectomy at T-T11. I had relief from the steady decline in my ability to walk for about 10 days, then the symptoms came back. I had another brain MRI several months after the surgery (January 98) that again was negative. I continued to serf the web for medical information (I continued to research Lyme disease as the information that I looked at represented that Lyme was curable) for neurological diseases. I then saw my GP and asked him for another Lyme test. Again, only an ELISA was done and again it was negative. In April of 98 my neurologist sent me to Phoenix, AZ to the Mayo Clinic for a second opinion. They redid most tests and a few more. The Mayo's diagnosis was neurological problems etiology unknown. They ruled out MS. I asked the neurologist at the Mayo about Lyme and showed him a rash on my leg (the rash was showed to all previous doctors), a very telltale symptom of Lyme. After the Mayo, my neurologist ordered another brain MRI. The radiologist diagnosed MS as the film sowed some shadowing on the brain stem, however, my neurologist examined the film along with a neuroradiologist and opinioned that the shadow was just an artifact. He ordered another evoked potential in November 98, however my partner canceled my health insurance and the test was not done. During this time researched MS and Lyme on the internet. After the first of the year, I decided to use the internet for a referral to a Lyme literate doctor. I searched the main Lyme pages and it lead to a support group in Las Vegas. I spoke to person representing the group an she set me up with a visiting doctor. He immediately ordered a Western Blot and a LUAT urine test. He sent the blood and urine to Igenex, a lab specializing in Lyme testing. Both tests came back strong positives. These tests along with the rash lead to a diagnosis of Lyme disease. I have been on assorted antibiotics since, searching for the right one that will be effective against the strain of spirochete I have. The quicker Lyme is found, the quicker relief is found. I currently walk with a cane (the short distances I can walk) and have weakness in my left arm. My doctor has said that I will be cured, that it may take up to 2 years. If this is a story you are looking for, you can reach me at larryy@lvcm.com or (702) 435-3615 (evenings), (702) 837-4202 (days). Larry Yenko
Larry Yenko <larryy@lvcm.com>
- 12/01/99 15:09:26 EST 

I just wanted to thank you for the article on Lyme Disease and the reprehensible actions of Dr Steere and his peers. Thanks to him and his cronies, it is becoming more and more difficult to find a doctor willing to treat Lyme Disease patients. Doctors now fear for their licenses if they treat Lyme Disease more aggressively than the conservative camp dictates. In fact, just last week, we lost a brave doctor who was courageously treating people very sick with Lyme Disease. The New York medical review board revoked his license for over diagnosing and over treating Lyme Disease. This is really quite perplexing considering there is NOT ONE research paper or scientific study that has ever been able to prove that short courses of antibiotics completely erradicate the spirochetes. What HAS been proven, in MANY papers, by some of Dr Steeres associates even, that Lyme Disease, in some cases, can come back without any additional exposure to the disease. Clearly, short courses of antiobiotics are not effective in wiping out the disease in some people's bodies. Just as short courses of antibiotics are not effective at wiping out Syphillis (another spirochete illness) or Tuburculosis, for that matter. So what frustrates Lyme Disease patients is that their bodies are telling them that they are still sick, many of their tests indicate they are still sick and yet according to Dr Steere - they MUST be cured! Consider this, my aunt had cancer twice and lyme disease once. She said having lyme disease was worse than the cancer. Can you imagine a doctor turning away a cancer patient because their cancer returned? Would a doctor tell them that they don't have cancer again because they got "X" doses of chemotherapy? Don't we all know that bacteria are great at mutating, just like cancer, and they can quickly form a resistance to antibiotics? Wouldn't a compassionate doctor try to treat a patient with resistant or recurring cancer with different therapies or chemotherapy? Why would treating a bacteria be any different? I've got to tell you - it defies all logic. PLEASE look at this closer - there is much much more here. Plenty to write about. Thank you again for your article.
S Douglas <JGood246@aol.com>
- 11/30/99 22:15:56 EST

Your article about Steere was so true. If the people with the disease do not see Steere as an authority with their best interest first, then that has to be taken seriously. His stance has caused so many people to be inadequately treated. Steere is not an authority or a spokesperson for Lyme.
Stacy <Freeland1@prodigy.net>
- 11/30/99 00:23:04 EST

Thank you for the article on Lyme Disease. My son has been very ill with Lyme Disease for about 3 years. He presented with a fever, malaise, flu like symptoms and a rash on his chest. I didn't realize that a rash could be indicative of Lyme Disease at the time. So I thought that he had the flu. About 3 weeks later he had such severe abdominal pain that I took him to the ER. He had an emergency appendectomy that evening only to find out that his appendix was normal but, according to the surgeon, his pelvis was inflamed. He continued to have severe abdominal pain and was unable to attend school. He was diagnosed with colitis. Then he was diagnosed with arthritis of the hip and spine secondary to bowl inflammation. And put on prednisone 60mg per day for 3 months. He had been ill for 2 months at this point and was getting worse every day. By this time he was having such severe spasms that he was literally thrown to the floor. The spasms were lasting from one to two hours with a break of perhaps an hour or two. The process would then start all over again. This went on from mid September of 1997 until August of l999. He truly was living a life of constant crippling pain. During this time he was being seen at Yale After extensive testing for everything imaginable (except Lyme Disease) and several hospital admissions later I was told that "he was trying to be the perfect child and was crying out for help". This despite the fact that they themselves had admitted him the first time they saw him because they were concerned that "something might be about to rupture" because he was in such severe pain. During that year he was admitted to the hospital 10 times - always in severe pain. At one point he was taken to the hospital by ambulance in cardiac and respiratory distress and was given IV Morphine in the ambulance. The final outcome at Yale was that, after seeing three psychiatrists and having all of them say that he was a normal goal -orientated adolescent with depression appropriate for the pain he was enduring, Yale was still adamant that he was having psychological problems. As I became more adamant that there was something wrong Yale decided to test for milk allergy. Although the tests were negative they still wanted to pursue the possibility. Needless to say we left Yale. I often wonder why the same institution that insists that if a Western Blot is negative you couldn't have Lyme Disease but if a milk allergy test is negative they still want to pursue it. After leaving Yale we finally got a diagnosis of Lyme Disease. He was dealing with constant abdominal pain; swollen knees, hips and hands; short term memory loss, severe migraine type headaches, confusion and red rashes that appeared and disappeared regularly. He was unable to walk frequently and was forced to used a wheel chair to be mobile at all. He also had sleep disturbances - he rarely slept at night and slept fitfully during the day. His skin became so sensitive that if he was touched it caused pain. Any noise set off spasm and seizure. In short his life became a living hell.. He went through several rounds of IV and oral antibiotics Then the decision was make to start him on Flagyl. At first he was extremely sick then slowly he began to improve. He is well enough now to return to school part time ( two courses) but he still misses school sporadically. He is unable to write because of the arthritis in his hands. He still has times when he is very confused and unable to think clearly. One day in school he became so disorientated that he wasn't able to find his way to the elevator. Luckily, he happened upon his brother and was escorted to the car where I was waiting for him. Some days he can't walk because his knees are so sore and swollen but the frequency of these events has diminished greatly. He now has problems about every 4 or 5 weeks. Those times are very difficult for him but he does have days when he can function. The symptoms that plagues him most often at this point are the ever-present pain and the fatigue that never seems to leave. He gets exhausted after a few hours of activity. . Noise and light are major problems. They invariably set off confusion and mild seizure and spasm. I have seen him staggering as though he was "drunk" . I have seen him on the floor flailing and twitching in pain. I have seen his eyes go blank as the confusion sets in. I have seen him struggling to get to a chair before he falls on the floor (frequently not making it before he fell). I have seen him fall off a chair that he was sitting on. I have seen him struggle to perform a simple task that was made unattainable for him because of the "brain fog" or confusion or the pain that he was dealing with. I have seen his hands and knees so red and swollen that he couldn't move because of the pain. I have seen blood under his skin as the force of the spasms tore soft tissue. He still has those marks on his skin and they fill with blood to this day when he is having spasms. I have seen him struggle to figure out where he was in relation to the rest of the room. I have, most of all, seen my son fight with everything he has in him to just keep going. Finally I have begun to see him improve --very slowly with set backs but he has begun to improve. No one could begin to understand the toll Lyme Disease takes on the lives of the patient and the family unless they have been there. When I hear it said that Lyme Disease can be "cured" in 3 or 4 weeks I wonder who could believe that -- only those who haven't had to deal with the persistent infection that Lyme Disease can be. Perhaps there are cases where that can happen but in my experience that isn't the case if Lyme hasn't been diagnosed right away. In my sons case it was almost a year before he was treated. We are now in the third year and he is just beginning to improve. He has missed his early teenage years. So far they have been spent in pain and isolation from his peers and all the things that kids his age are doing. He has told me on several occasions that the worst part of Lyme Disease is the isolation. He is far from what he was before Lyme Disease, hopefully that is in the future for him. Right now he still needs medication and isn't able to live a normal life by any means. Please continue to inform the public of the other side of Lyme Disease - the untold side of the suffering of the patients and their families. Anita Field Southbury, Ct.
Anita Field <anitafield@earthlink.net>
- 11/28/99 20:26:58 EST

Dear Mr. Lasalander, I was diagnosed with chronic lyme disease in 1991. I was doing okay, with only mild symptoms, until I was bitten again in 1994. Then, my chief complaint became tooth pain and pain in one small part of my upper mandible. I saw dentists and then lived with the pain for four years more. This past year, all heck broke lose with my health and I began showing classic symptoms of lyme, so much that my GP and neurologist both bet I had Lyme without even any positive blood tests. I wasn't convinced, though, because the first time I had Lyme, my symptoms were different from this second time. Finally I had a spinaltap and the results were also negative through the regular lab, but positive through the research lab which my dr had access to. I was also tested for ehrlichia and babesia and have both. Last June, my condition was so bad that many parts of my body were numb and my brain was mush. I was like an alzheimer's patient. I would watch TV all day and not think there was anything wrong with it. I made mistakes with the simplest tasks and got lost five minutes away from my house. I would watch my daughter eat her breakfast and then ask her if she had eaten breakfast. I started rocephin, 2 grams per day and stayed on that for nine weeks. Then, I went on oral doxycycline, 400 mg per day. My doctor ordered a peak and trough test and my levels weren't high enough and ordered 600mg per day. Now I'm also taking flagyl, 1500mg per day. My doctor said that I would be "Herx-ing" every day on the flagyl, but he also said that a small percentage of patients get completely cured on it. I feel lousy every day, but have had little windows of feeling better, my old strong self. The improvements are not outweighed by the symptoms I still have, but so far, I am much clearer-headed, TV is boring, thank heaven, and I have less fevers and lower temperatures. I had been running constant fevers for seven months. That spot in my upper mandible only hurts occaisionally, now, which is great, in comparison to how it used to be. When I started my IV Rocephin, I thought I was going to be cured in six weeks. I know now that I will have to be on antibiotics for much longer. I am lucky to have a doctor who understands lyme and who is treating this aggressively. I believe I will stay on antibiotics until I have a full month free of symptoms. Lyme Disease is not the first disease which ever existed which can require long term antibiotic treatment, so I don't see this as ridiculous, but as logically necessary. As long as I see improvement, which I monitor, by writing daily symptoms (or lack of),I will continue antibiotics. Doctors who say this disease is easy to diagnose and treat and cure are so mistaken. Between my own personal experience, and that of friends and family members who have lyme, it is the opposite - difficult, difficult, difficult. I hope that the medical profession, who I thought takes an oath to help people, will realize the seriousness of this disease and the need for rigorous treatments which, though harsh and hard to take, are Lyme sufferers only hope. Thank you.
Eva <artistemhgd@AOL.com>
- 11/27/99 01:40:12 EST

Dear Mr. Lasalandra, I live in Texas. Many doctors here believe that we do not have Lyme Disease in Texas even though there is information available to the contrary. My son has been very ill with Lyme Disease for several years. He is only 10 years old and has experienced things that have broken my heart. I had a bull's eye rash in January 1995 and was diagnosed and treated with the standard short course of antibiotics. I thought I was over it because the doctor said that I should be. I never realized that the migraines I because experiencing on an almost daily basis in April of that same year were caused by the Lyme Disease. Now after over a year of treatment I am no longer having migraines. My son had a very similar looking rash six months after mine and I took him to his pedicatrician. She diagnosed local reaction to an insect bite and he got no medication. His health deteriorated slowly until March of 1997 when he became ill and has not been well since. He has been treated for two years now and just suffered a relapse because he had finally begun taking only oral medications and those apparently were not strong enough for him. I really wish there was someone who could come and witness his life as it is today. I dare anyone to tell me he is cured. He continues to respond to antibiotics which is an indication of an ongoing infection. Because of our experiences I have become very active in Texas. I have started a group called the Texas Lyme Coalition and we are working with the Texas Legislature. The Texas Senate is going to conduct an interim study which will begin right after Christmas to look into the problems people with Lyme disease are experiencing in Texas. There will be several hearings around the state. We have a Senator who has suffered with Lyme disease for several years and who attributes his serious health problems to Lyme. The teaching of Alan Steere have caused unbelievable suffering all over this country. The numbers reported in Texas are very low. I do not believe they can be accurate when everyone I talk to knows someone with Lyme Disease. I appreciate your article on the Lyme protest. Lisa P. Johnson in Cedar Park, TX
Lisa P. Johnson <lisa@txlyme.org>
- 11/26/99 16:28:36 EST

Thank you! I had sent an earlier memo regarding your artical, however it did not appear, thus this one. As a Lyme Pt. since 1987, and founder of the Lyme Borrelia Out-Reach Foundation circa 1987 I have had the opportunity to reac some 125 million people world wide as to what this disease is doing. In the past 12 years I have personally interviewed no less than 10,000 pts. Their stories all the same, misery, financial, emotional,and mental horror. I just returned from Europe a few weeks ago, once again meeting with many there. I had lectured in Graz Austria as a guest of Dr. Robert Gasser MD, PH.d at the Dept of medicine a feww years back and then on to Australia three years ago. The same holds true there, pain and suffering. With the emergence of Ehrlichiosis and Babesiosis and various viral pathogebns, all I can say at this point in time, in this unfolding drama is : Please keep telling it like it is. I work with Lyme Pts. seven days a week, childen are being robbed of their childhood, the middle age, robbed of their productivity and the older generation being robbed of their golden years! May God bless you in your endeavors , keep telling it like it is and Lyme Patients, we are legion, continue to speak out against the evil that attacks us. Truth shall prevail. Stephen
Stephen J. Nostrom R.N. <Borrelias>
- 11/25/99 12:51:19 EST

Dear Mr. Lasalandra, Thank you for your article on the Lyme protest. I had chronic Lyme disease for two years before doctors could figure out what was wrong with me. I received long-term antibiotic treatment from a Lyme-literate physician, and have been well for about 6 years now. My mother also suffered terribly for many years and is doing much better after long-term treatment.
Tami Sutherland <suther18@pilot.msu.edu>
- 11/25/99 01:34:36 EST

Dear Mr. Lasalandra, I am a 43 year old female with 2 college degrees. It takes much effort for me to compose a letter because I have late-stage Lyme Disease. I removed an embedded deer tick in January, 1989, after deer hunting on the King Ranch in S. Texas. My hunting partner was hospitalized a few weeks later with a diagnosis of acute Lyme disease. despite these facts, I was misdiagnosed for 7 years. I had many diagnoses: Meniere's, Chronic Fatique Syndrome, Fibromyalgia, Toxic Encephalopathy, and MS, and of course, psychosomatic. I did ask several about Lyme, but it was always dismissed. While the doctors wrote up their opinions, my life was slowly destroyed. I have now been 90% bedridden for 7 years, have lost my home, career, friends and hobbies. I have brain damage, a seizure disorder, heart block, pain, constant pressure and dizziness in my head, and much more. But what does Alan Steere care; it's not his life, he's not waking up to this nightmare every day. Those that want to keep the epidemic of Lyme hidden cannot succeed forever because our numbers are growing larger every day. Today another Lyme doctor had his license revoked for treating Lyme. He was tried in front of the NY Office of Professional Medical Conduct on the basis of one doctors testimony that Lyme is always cured in 3 weeks. This same doctor has numerous published papers in prestigious journals that directly contradict his own testimony. There is a movement to destroy the leading Lyme doctors in this country that don't tow the Steere line. Other Lyme doctors are now afraid to testify on their behalf because it marks them for reprisal, puts them on the list. No amount of clinical evidence to the contray seems to matter. I hope the 2 (only 2) Lyme doctors in Texas are allowed to continue practicing--they have had some hassling in the past themselves. Living with this disease is living hell. Insult is added to injury by public misunderstanding and political maneuvering. By the way, the CDC just replied to my story by telling me there is no Lyme in S. Texas--quess I'm not sick, after all! Sincerely, Cary in Austin, TX
Cary <CaryKatz@aol.com>
- 11/24/99 21:36:50 EST

Dear Mr. Lasalandra, Thank you again for the even handed article on Alan Steere and his undeserved award from NIH. Your article cannot help but to inform others that there just might be more to Lyme Disease than they've been led to believe by a relatively powerful but non patient oriented group of physicians and others involved in the Lyme Conspiracy ongoing all these years and testimony given before Congress in 1993. Would you please consider writing an article on what you may find when you investigate the number of doctors nationwide who have been set on by their peers, state medical boards, and other similar authorities, had their licenses revoked, suspended, or restricted. The very compassionate doctors who treat the growing Lyme Community at large, who work with Lyme patients on a daily basis are being persecuted by these authorities to keep them from treating those of us who have late stage Lyme Disease because we've never been diagnosed and or treated till late in life, or have been treated with minimal antibiotics as per the very harmful Steere medical guidelines, which anyone with any degree of basic knowledge knows is wrong. Too many years Baby Boomers and those who came after have been fed antibiotics through foodstuffs by the cattle, swine, poultry, and dairy farm industries, because they learned it cut down on loss and increased profits. Causing bacterial infections, some, to become resistant to antibiotics. It is not morally right to persecute these doctors who are only helping us in the only possible way they can until someone discovers a cure for Lyme Disease. The rich insurance companies don't want to pay for the antibiotc treatments and infusions necessary when Lyme Disease has not been caught in time to cure right after the tick bite. Instead they deny us treatment with antibiotics on the basis that treatment with antibiotics for a bacterial infection is "experimental medicine". The longer each of us goes without proper treatment with antibiotics the greater chance for our immune systems to fail completely, leavins us open for opportunistic diseases to take hold. I am willing to bet, the insurance companies (some not all) are betting on this then they won't have to worry about treating us too long if we then contract a terminal illness. Please help bring the persecution in the United States Of America, of our compassionate physicians treating Lyme Disease patients to light. Thank you.
Sandra Smith
- 11/24/99 14:22:46 EST

Thank you Dr Steere for ruining my life.I am 32 3x positive western blot in Mississippi, but according to him I am supposed to be cured. Well i'm not and have been fighting the so called "cured" state for a year now.I just want my kids to know that this is truly a fair government and doctors really do HELP.
Teresa <moongrlxx@aol.com>
- 11/23/99 12:01:59 EST

Dear Michael, I am a TV executive who contracted Lyme Disease in 1996. I wanted to thank you for your article, and point out to you, from one professional to another, that you could be the next recipient of the Pulitzer Prize if you have the courage and wisdom to blow open the disgraceful methods used by Dr's such as Allen Steere that are not only counterproductive to patients, but have had direct negative influence in tragic losses of life, career and health. I have access to information that you would find startling at best and downright scary. Dr. Steere is only the most visible of the doctors and university-based researchers who have colluded with insurance companies to prevent patients from getting the care they desperately need. I went from six figures to six doctors in six days. I'm still fighting Lyme three years later. The toll it has taken is unestimable, and Dr. Steere's archaic (and, in my opinion, evil) positions and testimony on behalf of insurance companies and against fine, informed doctors has resulted in an environment where we, the rational patients who led active lives until we got this disease, must fight not only the disease itself but the brutal political fallout from the corrupt and fear-based practices of Steere and others like him. Where the hell is Dan Rather when you need him? Is there even a little of Dan Rather in you, Michael? I hope so. My email is pjarvis1@earthlink.net if you wish to continue a dialogue. Thank you.
Patrick Jarvis <pjarvis1@earthlink.net>
- 11/22/99 18:34:44 EST

Dear Mr. Lasalandra, I do not have the eloquence to show you the devastation of chronic Lyme or how long and how deadly serious the story of Lyme has been going on. As you will see below, the senate has been aware of this since 1993. I hope the enclosed information will help you in an investigation of how Allen Steere, MD, did not deserve to receive ANY award much less one from the NIH for an Astute Cinician. I attended the protest because I was/am appalled to see him honored. Both my husband and I have chronic, late stage Lyme disease and our lives have been ruined thanks to Allen Steere, MD http://www.lymetruth.org dodge@lymetruth.org LYMETRUTH Issue_#_020--July-August, 1999 Unless otherwise noted, all letters, comments, and articles including book reviews are the work of Douglas S. Dodge. They may be disseminated in any manner, but not modified or abridged.) INDEX I. PROPOSAL FOR A NATIONAL LYME DISEASE TASK FORCE ### I. Proposal to Senator Lieberman, with Enclosures ### August 27, 1999 The Honorable Joseph Lieberman One State Street-Suite 1420 Hartford, CT 06103 Proposal For A National Lyme Disease Task Force Dear Senator Lieberman: Promises and pledges made at the 1993 U.S. Senate Hearing on Lyme Disease have not been kept. Disinformation and cover-up from Washington and several academies still shatter the quality of life for millions who will go to their deaths not knowing that they were hit by the fastest-growing infectious disease in this country. The Centers for Disease Control and Prevention admits to tallying and reporting perhaps only 10 percent of actual cases of Lyme disease. It is hard to believe that since 1883, when Lyme disease was first recognized, no public or private agency has come up with dependable tests, or shown much concern about a cure for this plague. Many of us in the camp for truth beg you to form a national task force to address these issues. It may require only "a negligible amount of money," according to Senator Metzenbaum in 1993, "absolute pittances of dollars as far as money in this town is oncerned." It may even turn out that the taxpayer has already paid for research that was hidden or neglected by self-serving scientists. Too many seemingly loyal public servants and academicians are engaged in discrediting our side: many have interests in research grants, patents, and consultants' fees that lead them to disinform, to lie, to break their vows to heal. Some of them won't identify themselves. Most are driven by arrogance, guilt, greed, and only perhaps by ignorance. We are asking you to execute the action sworn to by Senators Dodd, Kennedy and Metzenbaum, plus others present at the 1993 hearing. I, and hundreds, if not thousands, of concerned people out here can propose members for your team. They will include Connecticut Attorney General Richard Blumenthal, who engineered the first legislation of health insurance for Connecticut Lyme disease patients, that will show the way to more comprehensive treatment benefits for millions nationwide. Other soldiers will be named: physicians and patients, scholars and scientists from around the world, members of the Armed Forces, investigative reporters, and media bigwigs. It shouldn't take your office more than an hour to riffle through the enclosures, pull up a few issues of www.lymetruth.org, and feel the pulse in the newsgroup sci.med.diseases.lyme, to see how much we need you to lead us. Respectfully, Douglas S. Dodge Encl: Curriculum Vitae "A Brief History of Lyme Disease," and "Lyme Disease Probably Is Curable," second editions of those originally published in Issues #1 and #8 (March and September 1998) of www.lymetruth.org cc: Richard Blumenthal *** Douglas S. Dodge Curriculum Vitae b. Christiania, Norway, 1920. Kent School, 1938. Clifton College, England, 1939. Yale University, B.A. 1943. Destroyers, Pacific, 1943-46 m. Christine F. Henriques companion: Professor Blitzen of Pow Wow Resident Director, Bertrand Freres, Ltd. (Essential Oils), Anglo-French subsidiary of Unilever U.K. Retired. UC, AOS, CYC, MFGP Research collaborator in the Entomology Division of the Peabody Museum of Yale University. Private pilot, single engine, land, instruments. Hybridizer in the genus Phalaenopsis Publications: NEWS of the Lepidopterists' Society,(Jan./Feb. 1985): "The Monofilament Method (And Other Aids to Mounting and Spreading Lepidoptera)" The Astrograph, vol.7, no.3. (December 1975): "M8 and M20 on 103a-F film (yellow filter)" Gray's Sporting Journal, Summer 1988: "South of No Man's Land" (under the pen name of Bruce Croghan) Verbatim, (Autumn 1992): "French Spoonerisms" New York Times Letters, February 10,1993: "For the Depressed, It Isn't All in the Mind" New York Times OP-ED, February 20, 1993: "Our Breast Cancer" New York Times Letters, July 12, 1994: "How Can We Instill Democracy in Haiti?" Various Forum\Opinion pieces and Letters to Editors on Lyme disease: Vineyard Gazette, New Haven Register, New York Times, Washington Post, Boston Globe, TIME magazine, New York magazine, Yale Alumni Magazine, Connecticut magazine, USA Today, Prevention magazine; 1992 through 1999. Awaiting publication: Passports to a Second Youth The Common Cold of Mental Illness Star Hunting in Winter Skies Star Hunting in the Summer Milky Way Why All Living Things Have Latin Names The Joy of Motoring
Lymefightr <Lymefightr@aol.com>
- 11/22/99 10:07:05 EST

thank you michael, Well it has been since 92 that my husband and I have been dealing with LYME, like most at that time he was treated per/steere protocal 30 days doxy. At that time it seemed all was well. Suprise/ a year later he presented with symptoms of fatigue, aching joints, motor problems, passing out, low heart rate/35-45 bpm, low blood pressure well you get the picture. He was placed in the hospital for monitoring of heart. after 5 days he was released. things continued to get worse. the color in his face was gray, a symptoms all lymies can identify with. he seemed to be disoriented had trouble talking and so on . I was concerned and started asking questions, only to be put off. After visits to 5 different hospitals, some very well known hospitals, we were basically told "there is something wrong with your husband but it is something new or not identified as yet". yeah right. After months of traveling to those hospitals my mother found an article in a "woman's day magazine" that told of lyme. She dropped what she was doing and came over to our house. Our search began that day. I went to the library and checked out books on lyme. sure enough right there in those books was the story that fit my husband. after a trip back to our local doctor with the information he agreed to treat him, 30 days IV rocephin. that completed we felt a great sense of relief because he had improved. Surprise again/ he relapsed yet again about a year later. Our local doctor was at least honest with us saying he would like us to find someone who knows what they are doing with the LYME. then he could help treat him with advice from another dr. well we found a great doctor finally in Feb. of 96. He went under treatment at that time but because of prior steroid use from Johns Hopkins he is chronic late stage. He has applied for disablity and been denied and we are now in the appeals council awaiting an answer. Meanwhile in 97 I removed a tick from my abd. I watched and waited and finally showed symptoms of flu like illness, joints aching, sore throats, then a 7 inch bulls eye rash I went straight to our Lyme literate dr. and was put on meds. i have had a positive Western Blot. So here we both are lymies from West Virginia where there is no lyme according to the Infectious Disease Docs. here. We live very close to the PA border where lyme is some of the worst in the country. I guess those ticks need to learn how to read signs. Some of this has seeemed like a dream but then reality sets in and you realize things could be worse. I would like to thank all the supporter of the message boards for posting and e-mails i have received . they have been most helpful. This whole dialogue needs to be laid on the presidents desk. then an arrest warrant needs to be issued for Steere for endangering our lives. Please keep fighting this illness with everything we have mentally, morally and finacially. thank you again Michael and may we all be cured some day soon.
k.simpson <pansyrip@aol.com>
- 11/22/99 04:16:33 EST

My husband and I are both Lyme patients. We live in eastern PA where "Lyme isn't a problem." HA That's why there are 5 Lyme suffers on just two blocks of my street. I have have had slowly worsening neurological symptoms since the early 90s. I've been to the "average" 5 doctors before being diagnosed. BUT the thing is, like so many of the stories I've read in this guestbook, I diagnosed myself using the internet....then began the search for a Lyme literate doctor. I wound up traveling 3 hours one way to Lyme Disease Center in southern NJ. I had even been to a major research hospital in MD where I was told I had peripheral neuropathy for the second time...and was told that Lyme was one the things NOT causing my problems. After all, I had a negative blood test! I'm not going to drag this on with more of my story. The point I think this overwhelming response to you article points out is that the word has to be gotten out. There are so many victims out here whose lives have been DRAMATICALLY altered for the worse by this disease. It is scary to think how many more are undiagnosed or misdiagnosed. Like the previous letter, I too watched the CNN report on Legionaires Disease. Not to minimize the suffering caused by Legionaires or the loss of the families mentioned. But there are so few affected by it compared to Lyme. The annual total of reported cases increased 25-fold between 1982 and 1997, with a cumulative total of more than 103,000 cases reported during that period. More than 12,500 cases reported by 48 states to CDC in 1997. This is in the US alone. It also occurs in Europe and Asia. Lyme disease, a major public health problem rising in 46 states is more common than mumps, measles or meningitis. In fact, it is considered one of the four largest epidemics in the world: Lyme Disease, AIDS virus, yeast infection and the common cold. Lyme disease is 2nd only to AIDS in growth rate. You have got to help get national attention such as CNN or other major networks. Get your article and the extent of the response put out as a national newspaper article. Contact the NIH. The Federal government. Help us. Cathy
Cathy <cjdeschuhotmail.com>
- 11/22/99 01:07:22 EST

Hello Mr. Lasalandra- I would like to thank you for your article. My wife was diagnosed a year ago with Lyme disease and I appreciate your interest. I agree with you on every point you make and found it interesting to see what you chose to print of the 45 minutes of Dr. Steere's presentation (my wife and I were also at his lecture). CNN just did a story on Legionaires Disease (as I sat to write this). They are finding it in our hospital's water supply systems (11 out of 12 recently in San Antonio). Turns out there is no public law or mandate that hospitals test their water. Left as an option at $12,000/yr the testing doesn't get done. They find out the system is contaminated when people get sick and quite possibly die (three just recently died here in Maryland)! Dr. Richard Besser of the CDC stated that the CDC did not want to mandate the testing because they were afraid that the doctors would stop looking for the illness in their patients. They didn't want the hospitals to incure additional costs to decontaminate water, when the only people that are considered at high risk to get infected are those with a reduced immune system. Instead they have special precautions that they take for those patients that "require it". My wife stated that it was so sad that a disease that it so easily tested for and is curable still infects people. Especially when it is commonly accepted that the bacteria will be routinely found in the hospitals' water supply! (For that matter it is likely that it will be found in any large facility's water system!) Unfortunately the same logic is being applied to Lyme Disease. Dr. Steere says that once it gets into your central nervous system its difficult to eradicate. Once that happens, you're going to be sick for a very long time. One of Dr. Steere's paitents showed signs of the bacteria 4 years after treatment first started. Unlike Legionaires Disease, Lyme is difficult to test for and difficult to treat, especially if you don't start treatment right away. Dr. Steere told me that they can only report what they find. "How can I test to see if this bacteria has gotten to the brain?" he asked me. He also told me that some of his patients continued to show the non-arthritic symptoms like fatigue and forgetfulness after the study was concluded. In other words they didn't all recover completely, but the arthritis eventually went away and they couldn't find the bacteria in the synovial fluid any longer, which triggered the end of their treatment for Arthritic Lyme. . This fact was, and continues to be missed in the reporting. My wife has been on antibiotic therapy for a year and hasn't gotten better. The system to deal with infectious disease needs a tune-up. The way to recovery is through public awareness. Thanks again. -Ant
Anthony Ferraro <ferraroa@us.hsanet.net>
- 11/21/99 22:51:25 EST

THE NIH, THE CDC, AND ME: '"The U.S. does not have a biological warfare program. Period."' -- Roger Breeze, Director of Plum Island from 1987 to 1995 in a statement to the audience at the public hearing in Waterford, CT Nov 18, 1999. Which is to say, there is no "Biological Warfare Program", but no doubt, there is an agency that considers bio offensive and defensive strategies. PLUM ISLAND DOING RESEARCH ONLY ON ANIMAL VIRUSES, RESIDENTS TOLD AT HEARING. Perhaps they assume the general public doesn't know viruses jump species. Animal viruses have to be studied. And as long as the govt already has the facility, they should go ahead and work there. And they should lie to the public about it. What choice do they have. What choice do the citizens of this country have. None, really. We have seen individuals exercise an abuse of biotechnology on populations within populations (Japan subway and Saran, the recent availability of Anthrax in the US scare). It isn't possible that the US govt does not have a program for dealing with abuse of deadly chemicals and biologicals on multiple levels. What I'm not sure of is whether they have a program for dealing with biotech business/ insurance business abuses that are not outwardly agressive. Technology and international business practices exceed the ablity of our government to identify abuses of the inherent power of these. Today we have some of this technology quasi-managed by government officials whose friends own biotechnology companies. And we have businesses such as insurance companies managing the interpretation of technology. It may be time to consider inviting our government to be less reactive and more proactive regarding identifying sources of abuse in the biotech industry. They could start by discouraging formal contracts between insurance companies and university hospitals. And universities from encouraging researchers to seek NIH funding to support their private biotech enterprises, such as SUNY. Another example would be LifeSpan and the Yale/Tufts/NEMC Chronic Lyme Study. What possible motivation would there be for LifeSpan to become involved in the Chronic Lyme Study except to use the information to their advantage? If insurance companies were to invest in any human health research would it not be in hopes of discovering ways to cut costs? There are two ways to cut costs: Minimize disease states and reclassify diseases such that they need the least expensive treatment. It should be no surprize that insurance companies are closely aligned with people who perpetrate the deception that spirochetal infections are self-limiting or become auto-immune states. The government allows this to happen by allowing those closely aligned with big business/medical biotech business to manage the NIH. Our system of government was based on the need to separate the power of the church from the state, but our needs have changed. Our personal freedoms are now threatened by the union of big business (like health insurance) and science. When the NIH chooses to honor Allen Steere of Tufts (Lifespan) for his work with Lyme disease we can only see it as an attempt to spin the media such that big business and biotechnology can continue to abuse the ignorance of the citizenry of this country. The NIH condones this abuse. It's time to shake down the NIH. They've become too powerful in their alignment with big business.
Kathleen M. Dickson <kathleen.dickson@snet.net>
- 11/21/99 08:42:25 EST

I would first like to thank you for providing much needed media attention to this illness. My history with Lyme,like so many others posted here, proves that this disease is anything BUT easily diagnosed and easily treated. In summary, from July 1996 to March 1997 I saw 5 internists, 2 cardiologists, 1 pulmonary specialist ,1 infectious disease specialist and 5 neurologists. All of these were supposed 'top' doctors from New York City teaching hospitals. The difficulty in getting an explanation for my ever growing list of symptoms is best exemplified when I was given a diagnosis of MS in the morning by one doctor and then advised to seek psychiatric help, in the afternoon, by a different neurologist. In terms of being easily treated,I have been under treatment since March of 1997 and am still not back to normal. Having Lyme is like being sentenced to a prison term of unspecified duration. I believe a great disservice has been done to those of us afflicted with Lyme by honoring Dr. Steere. I also question how many people suffer with this illness but receive either no or a wrong diagnosis because of the 'theories' Dr Steere espouses to the medical community. How many more people need to become ill before the severity of this disease if recognized?
judy <nnysmj@excite.com>
USA - 11/21/99 07:03:14 EST

Michael, thanks for writing on the Lyme Disease protest. You see, I would not be in this world if I would not have been treated with the "overdiagnosis and overtreatment protocol". Two years of madness and no end in sight. Veronica Parcan
Veronica Parcan <vierkapar@erols.com>
- 11/20/99 18:24:14 EST

Is this where I put my story? I was diagnosed with LD in 1988. Let me go backwards and then I'll try to go forward. A year before in 1987 I had optic neuritis, lost the vision in my right eye for a few days, was in the hospital, had a cat scan and had spinal tap that was negative for MS, and had a group of neurologist standing around my bed saying they would like to diagnos MS, but they couldn't because only one lesion and negative spinal tap, but they felt sure it was MS. I left the hospital, decided to stay away from MD's for a while, and did my own amateur research into MS. What I founs was that nobody knew what MS was. It seemed mainly based on descriptions. I wasn't going to let anyone pidgeon-hole me with no etiology. I recognize that I'm the hero in my own drama. I think the people that have LD are all heroes. This is a hellacious(sp) thing to go through especially without the suppoet of the medical community. A year later because of reading abou LD and because of the encouragement of a chiropractor, I began looking for an MD to give me the LD blood test. I heard many times we don't have it around here. This was Atlanta GA. One doctor gave me an arthritis scan. (These are two important misconceptions about LD--that it only exists in endemic areas. It is a pandemic, all over the world. And that it has primarily an arthritis presentation. As you can see from the stories, chronic LD has many faces.) Fortunately, I didn't fall victim to the other primary misconception--that it is easily diagnosed with a blood test. (It only shows up on a small % of blood tests.) My doc gave me an elysa, which came back highly positive. She tested again and crosschecked me for syphillis. At the same time that I had the Elysa I also had an MRI, ehich came back consistent with MS. It is known now that MS and LD look the same on an MRI. My doc prescribed 2 weeks of iv rocephin. Emory was doing MRI's for free, because they wanted to see what LD looked like. On my first MRI after the abx, my MRI came back completely clear. Oh happy days. Some troublesome symptoms went away too. After a few months the symptoms came back along with the plaqueing on my MRI. My doc prescribed a few more wks. of iv. Then my doc told me she was following the protocol of the country's leading expert on LD and I had had enough abx to cure LD. She thought I had LD coincidental with MS. I knew there wasn't any cincidence about it. There I go being my own hero-detective again. I'm sure the expert my doc was referring to was Steere. I'm going to finish up. I'm getting tired. If you've gotten this far, I suspect you are too. Going backwards maybe 6 or 7 years or more; my husband and I were on the panhandle of FL riding our bikes on the beach and were playing in a area where trees were growing out of the ocean. We were driving home the next day and I notied or was alarmed by a big red bulls-eye rash on my thigh. I couldn't find it in a medical book. Doc's wouldn't have known what it was then anyway (early '80's). I didn't associat the awful summer flu I got later with the rash. I am resisting writing about other times I could have been infected. Dr Sam Donta (head of infectious disease at Boston U Hospital and provider of support for many in this country with chronic LD) says that he sees the bulls eye rash mainly with reinfections. I suspect I was infected at least once before. Going forward. I found the newsgroup on LD about 6 0r 7 yearafter my last treatment in Atlanta, and began many years of oral abx and some more iv. I don't think this has helped. It is probably too late for me. I talked to my doctor in Atlanta a few years ago. She said, "If we had known back then whar is coming out now, I would have treated you for much longer." This was heartening in a bittersweet way. Janie
Janie Westmoreland Horn <JRWest47@aol.com>
- 11/20/99 17:46:10 EST

My family has beenbeset by lyme disease for about 20 years. We live a good part of the year in Northern Westchester where 80% of the ticks carry lyme and other associated diseases. Because my doctor's didn't know about tick born illnesses other than those carried by dogs, I was first diagnosed with,Fibromyalgia, which has many of the same symptoms and meanwhile my lyme went undiagnosed and untreated and became more entrenched. When I knew more about lyme I had to fight with my infectious disease specialist to treat me for "non-specific" lyme and that would only be for several weeks at a time.. It is only in the last year that I have I have been treated more aggressively with six months on antibiotics that I have felf the return of some my energy to live and work. My husband was hospitalized with lyme and lyme meningitis is northern westchester in 1992 and with Lyme and Lyme meningo-encephalitis in 1995, and almost died both times. He has had a loss of cognititive functions. Both times after his initial recovery we went to neurologists and infectious disese specialists so that he could have follow up treatment. We were told that this was not necessary. Now we know better. ...I could go on and on but it is truly too painful to go on about the losses to quality of life that my entire family has sufferred due to bad tests, undertreatment, and inadequate treatment for lyme.
Judy <Katonah2@aol.com>
- 11/20/99 15:58:50 EST

thank you. Getting well and staying well after diagnosis is so difficult with this disease. Very hard going with very little help.
susan mcgown <robrunner@aol.com>
- 11/20/99 15:52:55 EST

I am sure that my situation is all too familiar, so I won't bore you with the specifics. Suffice it to say, that I had the bullseye rash, but not knowing the cause I didn't seek treatment. Years later, I exhibited symptoms ranging from parathesia to vertigo. After ten various doctors, including 2 neuros, I turned to the internet for help. Both neuros refused to test me for Lyme or provide antibiotic treatment. I paid out of pocket for a specialist, who put me on doxycycline for 7 months. I am into month number 5 of treatment, and all my symptoms have dissappeared. I only hope I don't relapse...
L. <tcljgr@aol.com>
- 11/20/99 00:31:28 EST

Dear Mr. Lasalandra, I hate Lyme.I have had it since I was 12 and now I am 15.I can't play football or basketball because my knees hurt so bad I can't run. I want to be well so my mom said to write to you to thank you for telling people how this being sick stinks. I want to be well and to play ball again. I hate LYme and I hate the doctor who didn't treat me right. Maybe he will get Lyme. Dan
Dan Melillo <danmelillo@hotmail.com>
- 11/19/99 23:11:12 EST

Dear Mr. Lasalandra, My mom showed me your article and I thank you for writing it. I am 19, have had Lyme for 3 years, spent most of my Junior year at home and am still struggling daily with chronic Lyme. My life is different then my friends here at college. I don't have the energy and sharpness I once had. My whole family has changed as we are all sick. If the doctors' had caught our problems early we may have had a chance. Now we just seek relief from the chronic pain and cognitive problems we face daily. My mom said you printed the truth. Ask the right questions, don't be afraid to expose the lies. Many lives could be changed by you. Christiana Melillo
Christie Melillo <melillcj@jmu.edu>
- 11/19/99 23:08:06 EST

Dear Mr. Lasalandra, I am a 20 year old Lyme patient whose life has been changed forever. Once a bright and promising world was open to me, now, due to misdiagnosis and treatment I can not even read. I must dictate my ideas to others who type them for me, I must listen to my textbooks on tape. Even then, I can not learn. What does my future hold for me? 4 weeks of antibiotics were supposed to cure me? Why doesn't Dr. Steere come live in MY body and mind now. He would then know how wrong he is. We, the Lyme community, need public awareness and proper treatment from the medical profession. Please continue to help us by printing the truth. Mike Melillo
Mike Melillo <mmelillo@excite.com>
- 11/19/99 23:03:34 EST

Thank you Michael: I want to thank you for your article as it showed the politics that have been responsible for many very ill people because we are being refused adequate medical treatment. I have had LD for over 10 years. I did not get a proper diagnosis until 1993 and I am now unable to hold a job and can barely keep my home and family in order. We so appreciate you opening up this subject to the public and hope you will continue to look for the truth. It is out there! Sharon Melillo
Sharon Melillo <melillo1@rcn.com>
- 11/19/99 22:58:59 EST

Dear Michael, Thank you for your recent Article on Lyme disease and Dr. Steere. I have had Lyme disease for over 3 years because, although I saw the tick and received treatment within 2 weeks, the treatment was not enough - either in the dosage or length of antibiotic treatment. And this happened because Dr. Steere's propoganda has too many good doctors either confused about appropriate treatment, or afraid to prescribe appropriate treatment for their patients. Early, aggressive treatment can work - my husband has had two deer tick bites over the past 3 years, and both times I was able to get him on Doxycycline 300mg/day for 6 weeks. To date, he shows no symptoms of having Lyme. But, for those of us who didn't have someone who knew the "right" thing to do and have doctors who would listen to reason, the consequence is chronic Lyme and a loss of our lives as we knew them. If Dr. Steere is so certain that Lyme is cured after one month of antibiotics, WHY are we still so ill, and WHAT do we have, and HOW should it be treated? Funny that I haven't seen any such information from Steere and his pals. We are NOT antibiotic seeking hypochondriacs - we are genuinely sick, and we don't want to be - we want to be well and we want our lives back. The only true statement that Steere made in this article is that Lyme disease has become a political, not medical problem, and he is the cause of this tragedy. Just as with Agent Orange, Aids, and Gulf War Syndrome, in the beginning, no one believed that these people had legitimate illnessess, but time and the heroic efforts of the victims of these illnesses eventually proved their existence. I believe that the same will happen for us - the victims of Lyme disease - but how many lives have to be destroyed and lost before that happens? Well, the first step towards that goal is to rid the medical profession of doctors (and it pains me to refer to them as doctors) like Steere, and others like him, who would sit back and see us suffer so that they can collect the big dollars from insurance companies by denying the existence of chronic Lyme, thus allowing them to deny coverage for appropriate medical treatment for this disease. Ours is a difficult and ongoing battle and, medically and politically, and I thank you again - for validating our existence and for giving us a voice. Patty
Patty <pattymcd@olg.com>
- 11/19/99 21:02:54 EST

Mr. Lasalandra, I would like to bring to your attention the fact that Dr. Steere had nothing to with the discovery of Lyme disease. He happened to be in the wrong place at the wrong time, much to the detriment of Lyme disease patients. The disease has been recognized in Europe for over 100 years by the names Acrodermatitis Chronica Atrophicans, Bannwarth's Syndrome, and Garin-Bujadoux . Lyme disease was first recognized, although the cause was unknown , in 1883 by a German physician named Alfred Buchwald. [1] In 1895 the first U.S. cases of ACA or late stage Lyme disease were described by an American dermatologist. [2] In 1909 a doctor in Sweden described the rash associated with Lyme disease, erythema chronicum migrans, now called erythema migrans or EM. He connected the rash to the bite of Ixodes tick. [3] In 1922 " French physicians Charles Gariin and Charles Bujadoux describe an association between EM and a painful neurologic condition called meminingradiculoneuritis (meningitis and severe radiating nerve pain and paralysis of the deltoid muscle, now known to be a cranial nerve palsy)." [4,5] In 1945 The Mayo Clincic followed cases of ACA or late stage Lyme disease. Although some of the patients had arthralgia, arthritis, and heart problems [all well known symptoms of late stage Lyme] before they came down with ACA the researchers concluded incorrectly that the symptoms were unrelated to the ACA.[6,7] The year of 1949 is especially significant. Sven Hellerstrom of the Karolinska Institute in Sweden presented all the known information on what has become know as Lyme disease in this country. He was literally laughed out of the room at the the Southern Medical Association of Ohio. He reported that antibiotics were sucessful in treating the disease and was ignored.[8] Another physician by the name of Niels Thyresson of Stockholm reported on 57 patients with, what is now known as Lyme disease. These patients improved with antibiotic treatment.. Some of their symptoms disappeared , while others improved . [9] In 1955 the first proof that this bull's eye rash was an infectious disease. [10] In 1956 a detailed description of what is now known as Lyme disease was "provided in a in a medical textbook in the United States, making information about this disease accessible to the United States medical community for the first time." [11,12]. In 1963 a patient with ACA, or late stage Lyme disease, with a positive rheumatoid test was described.[13] In 1970, Rudolph Scrimenti, a dermatologist connected to the Department of Dermatology at the Medical College of Wisconsin , as well as an expert in skin infections of Lyme disease described a case of Lyme disease from Wisconsin . He mentions the various symptoms connected to the disease and the use of antibiotic to treat it.[14] In 1975 patients with Lyme disease were found to have bone damage and radiating nerve pain once again showing the many systems involved in the disease. [15] In 1975, A Connecticut mother, Polly Murray, contacted Allen Steere at Yale. She was concerned about her children. They had been sick with various ailments since the 1960s. She thought the ailments could be connected to a tick. At one point in Mrs. Murray's search for the cause of her family's strange afflictions, a doctor had the audacity to say to her, "I suppose you think this is some new disease,..Why they might even call it Murray's disease."(page 86. The Widening Circle -A Lyme Disease Pioneer Tells Her Story by Polly Murray) In 1977 Allen Steere did a study of children with with Lyme disease. When the four children treated with shorterm antibiotics developed arthritis, Steere concluded that antibiotics did not work and treated the children with aspirin. In a follow up study "The researchers decide against treating the patients with antibiotics, despite citing numerous European studies attesting to their effectiveness and just one claiming they are of no value. Steroids and aspirin are used as treament." [16] therapy and the children, of course, continued to have symtoms. The researchers decided not to treat the patients with futher antibiotics and treated them with steroids and aspirin, drugs that suppress the immune system and allow bacterial infections to spread throughout the body.[17] In 1981 "Willy Burgdorfer, an entomologist at the Rocky Mountain Laboratories" discovered the spirochete that causes Lyme disease in a tick " collected by Edward Bosler of the New York State Department of Health . [18] Dr. Burgdorfer went on to become a founding member of the Lyme Disease Foundation.[18] Since the discovery of the spirochete that causes Lyme disease, a discovery that coincided with the goverments's decision to sell the patents on living organisms, a certain segment of scientists involved with Lyme disease research have gone out of their way to prevent the seriousness of the disease being presented to the public. These scientists are making money off the suffering of Lyme patients, They are involved with biotech companies that have financial interests in the treament of symptoms of Lyme disease and are not all interested in finding a cure, let alone a reliable test. Cured patients are of no use to these researchers and the biotech companies. Research funds dry up if a cure is found. Dr. Steere knows that Lyme disease not adequately treated returns to torment the person unlucky enough to contract i the disease another day. His knowledge of this is obvious in the Book The Medical Detectives by Bertron Rouche. The last chapter of the book, " The Foulest and Nastiest Creatures That Be", is about Lyme disease. There is case history of a patient in East Hampton in the summer of 1982. The patient descibes her nightmare encounter with this horrible disease. Her husband describes her condition and says at one point he thought she was dying. "..I suppose this sounds a bit silly,...But there was a time, when Priscilla was at her worst, when I had an awful thought: We had never talked about death as something that might happen to one of us. I realized that I didn't know if she wanted a burial or cremation....It gives you an idea of how sick I thought she was." The author, Bertron Rouech'e reports , "Dr. Grunwaldt told me that he had only seen one case of RMSF in his thirteen years of practice on Long Island, and only twenty cases of babesiosis. But he had seen and treated at least four hundred cases of Lyme disease." (1982) Earlier in the chapter Dr. Grunwaldt tells the author about an EM rash he saw on Shelter Island in 1975 and again in the summer of 1976. He talks about taking the trouble to search the literature- " most of the reports I found were Scandanavian,some of them going back to the nineteen twenties. I found a 1962 paper by three researchers at the university of Helsinki which discussed a possible relationship between Ixodes ticks and the erythema chronicum migrans that was then associated with meningitis. But you can't count on a rash as an infallible clue. For one thing, as we know now, it isn't always present. For another it only appears several days after the bite and the intial symptoms . In any event, I started treating my cases with antibiotics, and that seemed to do some good. I followed Steere's work as it was published, and that's when I realized that what I was seeing was his Lyme Disease. I remember a telephone conversation I had with Steere in 1978. He had decided that in certain cases Lyme disease was self-limiting---that it cured itself and after a while just vanished. That's true, of course ,in a way. It seems to go away, but it really just goes underground, and then emerges in a much more serious way. The late complications usually take one of three forms......arthritis.... neurological....The third form affects the heart. When Steere assured me that the disease was self-limiting, I stopped using antibiotics. But then he dug deeper and changed his mind. We now know that prompt treatment with a penicillin can GENERALLY prevent the later manifestations." "...The laboratory work--the most significant work---was done at the Rocky Mountain Laboratories, in Hamilton, Montana, by a team headed by Willy Burgdorferi.....As you know the cause of syphillis is also a spirochete. Not the same one...And untreatedsyphillis, like lyme disease, can later reappear, with very serious consequences. "The laboratory findings were published in Science and in the Journal of Clinical Investigation in 1982 and 1983. And that's about where we stand right now. We have the disease as an entity, we have the causative organism, and we have the vector---the tick.And we have an effective treatment. There are still some loose ends....." The chapter ends with an author's note " A report published in the June 14, 1990, issue of The New England Journal England of Medicine suggests that the avoidance of ticks or tick country may not be enough to avoid exposure to Lyme disease. Dr. Steven W. Luger.. offers both laboratory and anecdotal clinical evidence that biting flies--deerflies and horseflies ---- may carry the Borrelia burgdorferi spirochete and transmit it to human beings. He does,however offer a word of consolation:"In contrast to the painless bit of I. dammini, the bite of flies is painful and not likely to be overlooked." There is more than adequate proof that Lyme disease is not easily diagnosed, is rampant and spreading at an alarming rate, seronegative Lyme disease is a common problem and Lyme disease follows closely the course of it's fellow spirochetal disease, syphilis. If not treated properly the disease will return. The late stage of a spirochetal disease is not a pretty picture. the disease attacks the CNS. The patient, in particular , and society, in general, will suffer for years to come as a result of the criminal actions of these so called research scientists. We are facing another much larger Tuskegee Study and there will not be enough "I'm sorrys" to go around this time. Our insane asylums were filled with syphilis patients at the turn of the 19th century. I suggest you research the number of Lyme patients residing in prisons as we end the 20th century. Georgia Wissmiller My main source for the quotes and information in my letter is the book Everything You Need to Know About Lyme Disease by Karen Vanderhoof-Forschner. I have relied on the Appendix 1 on page 159 for a condensed version of the history of Lyme disease and a thorough bibliography referencing the information. 1. 1883 "German physcician Alfred Buchwald describes a degenerative skin condition lasting 16 years in one patient which he names diffuse idiopathic skin atrophy. This is the first record of what we know as acrodermatitis chronica atrophicans (ACA), which is a late Lyme disease skin condition......" "source: Buchwald 1883...... ...referenced in Weber/Burgdorfer (1993), chapter by Weber/Pfister." 2. Bronson, E.B. (1895). "A case of symemetric cutaneous atrophy of the extremities. " J Cutan Dis, 13:1-10. Referenced by Scrimenti 919950. 3. Afzelius A. Verhandlungen der dermatologischen Gesellschaft zu Stockholm. Arch Dermatol Syph 1910;101:404 Referenced in Weber/Burgdorfer (1993), chapter by Weber/Pfister 4. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 161 5. Garin CH, Bujadoux CH. Paralysie par les tiques J Med Lyon 1922;71:765-7 Referenced in Weber/Burgdorfer (1993), chapter by Weber/Pfister. 6. Everything You Need To Know About Lyme Disease by Karen Vanderhoof-Forschner. pg. 165 7. 1945 "Mayo Clinic researchers present additional cases of ACA. Although some of the patients had arthralgias, arthritis and heart problems prior to ACA the researchers conclude they are unrelated to the skin disease. source: Montgomery and Sullivan (1945) "Acrodermatitis atrophicans chronica.&qu