Michael Lasalandra's Guestbook - Archive

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Dear Michael, Would you let the government tell your personal physician how to treat an illness you have? If you had a stubborn sinus infection that wasn’t cured after a round of antibiotics – wouldn’t you be shocked if your physician refused to prescribe another dose or a different antibiotic because the government said it wasn’t necessary? That is exactly what is happening in New York State right now. But it isn’t about sinus infections, it’s about Lyme Disease. No matter what your own personal view or experience is with Lyme Disease, the issues in the current debate revolve around a physician’s freedom to treat patients as their illnesses warrant. If you are personally satisfied that two or three weeks of antibiotics cure Lyme Disease – that’s fine. If you understand that some people go undiagnosed for years and their illnesses require more aggressive approaches – then you need to understand that this right to treatment is being threatened. Let’s stop for a moment and look at the ridiculousness of this whole argument – we are talking about antibiotics – it is not as if this whole flap is about narcotics! Ask yourself this question, “Why should the OPMC, or anyone else for that matter, care how long antibiotics are prescribed?” Doctors familiar with treating chronic and late stage Lyme Disease carefully monitor their patients while they are on antibiotics to be sure their medications are effective, necessary and not causing any harmful side effects. So why are they being singled out for prescribing simple antibiotics? It’s not like they’re prescribing morphine or codeine! Meantime, dermatologists prescribe antibiotics for their patients like it’s candy! The current “standard of care” sited by the OPMC for Lyme Disease has been strongly influenced by a core group of doctors who specialize in Rheumatology. Personally, I think these Rheumatologists are getting nervous about the future of their business. New studies are showing that some types of Rheumatoid Arthritis respond to long term antibiotics. Ooops... there goes the bread and butter of their business. They may also be worried about losing their Chronic Fatigue Syndrome/Fibromyalgia patients because studies are emerging that indicate these diseases are possibly caused by mycroplasms that ALSO respond to antibiotics. There’s another bite out of their patient base. And recently, approximately 30 patients from a Florida Chronic Fatigue Support group applied to be included in the Ampligen (antiviral) drug trial. They were not allowed in the study because every one of them were found to have... Lyme Disease! How about that? How interesting that these rheumatologists recommend such short courses of antibiotics. How ironic that when a patient relapses, these same doctors have created a new auto-immune (rheumatoid) illness: Post-Lyme Syndrome. An illness that has no scientific basis in fact. Once diagnosed with “Post-Lyme Syndrome”, these patients must see their Rheumatologist on a regular basis so that he can manage their new long-term auto-immune illness. So it is in Rheumatology’s best interest to prescribe short courses of antibiotics – because it creates a regular clientele when the patients relapse. Very smart on their part. Finally, please consider this. The current Lyme disease vaccine (developed by a group of Rheumatologists), uses a protein called OspA. This OspA protein is shown to trigger Autoimmune Arthritis in people who have the HLA-DR4+ gene type. What are the implications of administering this vaccine when it is estimated that 1/3 of the population have this gene? Another source of income for the Rheumatologists? I think so. So how is it that a state agency such as the New York State Office of Professional Medical Conduct becomes a tool of unethical academic doctors for the purpose of destroying all whom digress from their own erroneous beliefs and in the interest of their bottom line? It is these academic doctors who are unethical. These doctors are using the OPMC as their puppet. It is an ideal tool since the OPMC’s hearing rules build in a clear lack of due process for the doctors accused of wrongdoing, and the dictatorial powers given to the OPMC go unchecked. Then the OPMC conveniently disregards the totality of peer-reviewed science and picks and chooses whatever information suits them. Clearly, some new unbiased system must be created. In the mean time, an investigation of the OPMC is warranted based on their biased and unethical actions. Whether or not you agree that longer doses of antibiotics are sometimes required to cure Lyme Disease, it is necessary to protect patients rights and the rights of doctors to treat their patients as necessary. We are outraged when insurance companies limit our medical freedom – you should be even more outraged when the government tries to do it too.
S Douglas <doodle731>
Wading River, NY USA - 02/16/00 17:10:41 EST

I was bit by a tic July 1991. I have been suffering ever since. I have had a few good months. Right now, 9 years later, I have hip pain, lower back pain, and sometimes neck pain. This has been going on for several days now. I take Tylenol several times a day. It might last a few more days or could be gone tomorrow. It is a come and go thing. Also the night sweats are never ending. I'm currently on hormones trying to stop the night sweats. They are not helping. It seems to me that my proble of sweats is not hormonal but LYME DISEASE. I return to my doctor next Tuesday. I would like to know when am I going to be curred. I am currently not on medication for Lyme. I have had many antibotics and several rounds of IV therapy. When does the cure take place? Let's face it. There is NO CURE!! Helen
Helen Diegel <Heldiegel@aol.com>
- 02/09/00 23:28:23 EST

Dear Mr. Lasalandra, Hearing such a well-credentialed group of doctors take such a superficial "easy cure" view of a complicated and relatively new disease like Lyme, is unnerving to say the least. I have a daughter, age 8, who has had Lyme twice. And the most recent bout was only diagnosed several MONTHS after the onset of symptoms. Where is the money and power behind studies to find out what happens to people who have late diagnosis? What happens to them? Fact is, no one really knows. And so, I will be taking my daugher to a doctor in Connecticut next month to see what he thinks. Isn't it sad that there are no pediatric doctors in Boston who are well-versed or well-respected in treating Lyme? -E
E. McHenry <EMMC2@aol.com>
- 02/09/00 20:51:56 EST

Dear Mr. Lasalandra, Thanks for once more writing a balanced article regarding Lyme disease. That JAMA article is ridiculous. Dr. Gardner from SUNY at Stony Brook is right---of course the patients who never met the "medical definition" of Lyme disease are sicker---they were never treated for Lyme disease and that's probably what they have. Poor guinea pigs. Thanks again, Eileen Glaessgen, MD. And I'm no longer a member of the AMA.
Eileen McInerney Glaessgen, MD <emcinerney@earthlink.net>
- 02/09/00 16:26:44 EST

I am FURIOUS at these so called "lyme Drs" they say one thing but they know another. I am 33 YO and I trained horses untill last year, I can no longer ride because the Lyme Disease has settled in my neck and has damaged 3 discs (proved by MRI's). Several of these "Lyme Drs" are paid to testify in court on cases for money! This is not right, they are not right, somebody somewhere is trying to hide the truth from us, and I am mad as heck that they are telling me that a "control group" fared the same as I would, ha, I wonder did they get the control group from a Leper Colony somewhere? I would hate to think of anyone feeling as poorly as I do, words cannot convey my dismay. Pepi
Heather <rod@mexia.com>
- 02/09/00 15:11:31 EST

I spent seven plus years searching for a diagnosis to my multi-symptom illness. I have now been treated for three years with antibiotics for lyme disease. I very much would like to stop antibitic therapy, but even with medication my symptoms are barely held in check. My first experience with stopping antibiotics ended with a major flare within about three weeks. I resumed the antibiotic therapy I had been on, but the results were poor. I improved somewhat, but I continued to have regular flare ups. My doctor switched antibiotics and within days I had improved greatly. I have gone off medication since, because of stomach problems and was flaring up within three days. I still am not symptom free and flare mildly about once a month. I do however, live pain and stiffness free, I can work and think, I can enjoy my family and seldom experience fatigue. I spent years feeling like I was being tortured and I hope a cure will be discovered before antibiotic options are exhausted. There is nothing in my experience that would lead me to believe that short term therapy works, unless there is something that I have not recieved or information that I am not aware of. I very much agree with researchers and Doctors who are listening to their patients. There may be some patients that are cured within four weeks. What about the ones who aren't, or like myself spent years searching for a diagnosis. I would love to be cured. I would love to go off antibiotics, but I also would hate of again suffer like I did for so many years. Even with a young family, I was feeling that I couldn't stand the lethargy, pain, and mental confusion any longer. I would say to you, to listen to what the people are saying about their illness, if I had been at the protest, I would have been screaming. Is that what you experienced.
Sylvia O'Connor <syl2k@hotmail.com>
- 02/07/00 18:00:03 EST

It took me 3 years to be diagnosed with Lyme. I not only have Lyme after two long episodes of antibiotics, but coinfections that often go with the disease and are not even tested. This article is bogus. My Infectious Disease Professor from the University of Iowa Hospitals and Clinics said and I quote, "You can send ten blood samples to ten different labs and get 10 different results." How can we rely on research when testing for the disease is so poor and unstandardized. The researchers who do these studies know this. They just want to be published at the expense of those like myself who are fighting for a relief from the ongoing symptoms of this disease. Craig Cox / 4745 Estero Blvd. / Ft Myers Beach, Fl 33931
Craig Cox <cc213319@aol.com >
- 02/06/00 09:53:30 EST

Thanks Mike for your article. Thanks especially for quoting Dr. Fallon of Columbia University. It is comforting to know that at least one Ivy League institution is not in Lyme-denial! JAMA's article by Shapiro and friends is another stab at proving to themselves that Lyme disease is no big deal. Shapiro and his cohorts have ZERO credibility with an expanding number of Lyme disease patients and researchers. They can write all the papers they want trying to convince Lyme disease patients and our Lyme Literate doctors (and more importantly, public officials and insurers who line their pockets) that we are hypochondriacs, that chronic Lyme disease is easily cured, and that long term antibiotics for treatment of persistent symptoms is wrong, but fewer and fewer people are buying their deceit -- and this goes for the non-Lyme community as well! Shapiro, et al, are like the "experts" who tried to convince Columbus the earth is flat: WRONG, WRONG, WRONG! There are a few obvious study flaws in the JAMA article that should be glaringly apparent to any reader: 1. Of the 678 Lyme patients in the study, 64.3% were positive on the ELISA test, which studies have shown to have a 92% false NEGATIVE rate. Thus, a very large number of Lyme victims were excluded from the study. Those who WERE seronegative in the study were the group to report the most "persistent and recurrent subjective complaints" but Shapiro claims "Lyme disease either was a misdiagnosis or was not the cause of the symptoms." However, no patients received even Western Blot testing, much less any of the newer more informative tests, such as the Lyme Urine Antigen Test. How can Shapiro base his conclusions on but one flawed diagnostic test? 2. Most of the patients in the study were diagnosed and promptly treated for Lyme. Any knowledgeable Lyme disease victim or physician will agree that prompt diagnosis and treatment produces better results! Victims who "developed symptoms months to years before Lyme disease was diagnosed and were not treated from months to years after their symptoms" were not included in the study. Again, this excludes LOTS OF PEOPLE. (I, for example, although I don't live in Connecticut where the study was conducted, went undiagnosed and untreated for a long time and so did nearly every Lyme victim who is still suffering.) 3. Tickborne coinfections, such as babesiosis and ehrlichiosis, etc., are completely ignored in the JAMA article. Many victims of Lyme also suffer from these coinfections, which must also be treated for improvement to occur. How do we know that those patients in the study reporting increased problems didn't have coinfections? Lyme disease is the NUMBER ONE VECTOR BORNE INFECTIOUS DISEASE IN THE U.S. What these ridiculous flat-earth-genre studies are completely missing is the exciting implications of proper diagnosis and treatment of tickborne ailments. Current studies reveal significant breakthrough results have been obtained by long term treatment: reversal of some cases of blindness, deafness, autism, Tourettes' syndrome, seizures, strokes, MS, paralysis, and Alzheimer's, to mention a few! Long term antibiotic treatment for Lyme has reversed my high blood pressure, irregular heart beat, some of my nerve damage, and recent treatment for babesiosis reversed fatigue and some of my myopia (I am 63). Tickborne diseases ARE A VERY BIG DEAL! They can infect all organs and systems. It's time Shapiro and friends stopped trying, over and over, to defend their earlier erroneous papers on the "easy cure" of Lyme disease, and woke up to the wonderful opportunities for healing that new RELEVENT scientific research is revealing! Basically, the JAMA paper is STUPID, BORING, TOTALLY IRRELEVENT and a big waste of ink put forth by politicized doctors determined to control grant awards, destroy those physicians who consider a broader range of treatments for tickborne diseases, and please the insurers they testify for. Regrettably, in the process, scientific objectivity and the practice of "Good Science" have been lost. Sincerely, S.G.L. Parke, West Chester, PA
Stephanie Gail Lavender Parke <sglp@ccil.org>
- 02/05/00 22:05:04 EST

I would like to comment that I applaud the fact that the Boston Herald is at least printing ANY information about lyme disease. I am a chronic sufferer as well as my husband and 2 of my 6 children. We have 15 people on my street alone in central NJ with chronic lyme and I know of 57 cases in my 1.6 sq. mile town. Why is it that if lyme were curable in 28 days, do we have a vaccine? and why do we still test positive for the antigens long after 28 days? If there is a magic pill that one takes to be "cured", please forward the info to me, I will be the first one to take it. I would love to get on with my life and take care of my husband and six children. I have had over 500 people write to me since Aug. 1999, all chronic with lyme. They have tried many, many remedies and yet NONE of us have found the cure. Please, keep printing the truth about lyme disease and why not expose what is really going on???? Why not print the truth about how the OPMC is revoking NY State drs.' licenses just because they are treating lyme!!!! Dr, Perry Orens license is gone, now they are going after 19 other drs. This is a crime and this is what you should be investigating!!!
Sue Sadler-Massie <Ssadlermas@aol.com>
- 02/05/00 17:38:43 EST

Regarding the JAMA Lyme article Feb 2, 2000 Allow me to make it all perfectly clear: This report says the following:.... "If you had Lyme disease and presented with only as arthritis and not with continuous neurological involvement, and you recovered from it, you had Lyme disease with arthritic and not continuous neurologial involvement, you which recovered from." It also says, "If you had Lyme disease, and 69% in the study said they had recurrent problems since Lyme disease, really only 19% did because we interchange the definition of clinical diagnosis and CDC reporting criteria for seropositive, as needed." Exact quote from text of article:.. "Reports have appeared in both the lay press and the medical literature of persons who were diagnosed as having Lyme disease and subsequently developed either recurrent or persistent, nonspecific symptoms (such as fatigue or arthralgia) attributed to Lyme disease (sometimes even if they were treated with antimicrobial therapies).2-5 Such patients occasionally receive either repeated or prolonged parenteral courses of antimicrobial therapy despite statements by the American College of Rheumatology, the Infectious Diseases Society of America, and others that such treatment is not warranted.6, 7 Some of these reports are about highly selected samples of patients, many of whom developed symptoms months to years before Lyme disease was diagnosed and were not treated from months to years after the onset of their symptoms.8, 9 These patients are not comparable to most patients who currently are being diagnosed as having Lyme disease and being treated for it. "... Again, allow me to translate: "We, Steere, Selzer, Gerber, Shapiro etc, are the ones who reported to the American College of Rheumatology (ACR) what we consider to be treatment guidelines in 1993 via our article listed below. Nevermind all this new data about being able to reculture spirochetes from macrophages and positive blood cultures from patients who had been repeatedly treated with anibtiotics, and cyst forms. Now, we cite our former reference, our journal article, as the position paper for the ACR and the Infectious Diseases Society of America (Mission Statement: The name of this *Corporation* shall be the Infectious Diseases Society of America (IDSA). The IDSA is an organization of physicians, scientists and other health care professionals dedicated to the promotion and recognition of excellence in research, patient care, public health, disease prevention and education in the field of infectious diseases. The Society promotes the aims and goals of its members by its organizational structure, professional journals, professional meetings, advocacy, and other activities.). Nevermind that you can't find any confirming evidence that this article, 'Ann Intern Med 1993 Sep 15;119(6):503-9 Empiric parenteral antibiotic treatment of patients with fibromyalgia and fatigue and a positive serologic result for Lyme disease. A cost-effectiveness analysis. Lightfoot RW Jr, Luft BJ, Rahn DW, Steere AC, Sigal LH, Zoschke DC, Gardner P, Britton MC, Kaufman RL' is the position of the www.isda.com Infectious Diseases Society of America or the ACR. And nevermind that there were 14 study presentations about Lyme disease at the 1999 ACR Annual Scientific Meeting. Ours is the ACR position paper because we say it is and we wrote and we're from Yale and Tufts. We were there when Polly Murray and Willy Burgdorfer discovered the disease, so it's our disease to interpret for the public. Now, now, you silly Lyme People, I hope you understand now about Lyme disease: Almost no one has chronic Lyme disease. It is rare. However, we must make it clear to the public about Lyme Disease:... You can't have Lyme unless you have a raised, red, warm, and painful knee. Then, if you have been given three weeks of antibiotics and still have this problem, you have no longer have Lyme disease (we interchange with the term 'Lyme disease' with 'Lyme arthritis' as needed..nevermind that they actually mean two differnt things, one a collection of symptoms and the other, referring to joint inflammation due to the presence of the spirochete) but a lesser symptom set that is not more severe than that which is suffered by the general population suffers simply as a result of the aging process. If you have neurological symptoms, we consider them mild. Most of you citizens are not doctors because you aren't smart enough anyway, so we can't see how you can dedect any difference in you intellectual ability. They are subtle or mild relative to your former lower intelligence and of no consequence. So, if you have Lyme disease, you really don't, no matter what happens. What's so hard to understand or accept about that? It's the anxiety about being sick that is the most detrimental to the patient. Similarly, patients who have neurosyphilis, AIDs, Tuberculosis, Polio, Smallpox, etc, no longer have these diseases once they have been treated for 21- 30 days, as that is all the treatment that is required. Yet the anxiety caused by the fear of these diseases is what consumes health care resources. So, if given a vaccine, people will have less anxiety... As we all know, people who suffered and died during the Black Plague, during the Middle Ages, or the Spanish flu, in the early part of the 20th century, before vaccines were available, died of fright... In conslusion, if anyone has any questions about Lyme disease, we recommend that you see a Rheumatologist for treatment of your anxiety. The only thing you need to fear, is fear itself. Thank you. Have a nice day." I hope that settles the question of Lyme disease for all of you commoners for once and for all. "Now please queue up and take your vaccine.. Nevermind about the potential autoimmune reaction..."
KathleenMDickson <kathleen.dickson@snet.net>
- 02/05/00 11:08:44 EST

yesterday I left you a message abut the Lyme Disease article you had printed. I have been corrected about your stand on Lyme and it's effects on patients. I apologize if I hurt your feelings and was out of line. It was the article that upset me. However, I know now where the article came from and know more about the whole thing in general. Please keep up your good works on helping the patients of Lyme Disease. I hear they are very good. As a reporter I know and understand you have to do both sides of any story or situation. But we Lyme patients need all the help and support we can get. I am sure you would be very interested in the story of Shirley J. Forsman. by her daughter Kathryn J. Harp at thumper@paulbunyan.net I hope you will contact her and hear her mothers story of living and passing away from Lyme Disease. Thank you for your support and help. God Bless You.
Rita West <yeshuaw7@juno.com>
- 02/04/00 18:11:59 EST

Thanks again, Michael, for showing both sides of the story regarding prognosis after Lyme treatment. This study does nothing whatsoever to help those suffering with advanced stages of Lyme disease. In fact, it hurts them in many cases because doctors are tempted to assume their symptoms are not from Lyme and therefore don't need antibiotic treatment.This is far from true regarding thousands of people including my own family members and myself.Keep up the good job, i.e. how you followed through with investigation of Dr. Shapiro and his connection with drug companies, and your counterbalance approach in interviewing qualified, experienced doctors such as Dr. Fallon to help contain distorted opinion on Lyme disease.I hope and pray that more and more exposure of this misinformation of Lyme disease will put an end to inadequate diagnosis and treatment of this aweful multi-systemic bacterial illness.Lyme disease information, support and hope: http://oikourgos.com/trisha
Nancy Berntsen <berntsen@altavista.net>
- 02/04/00 11:13:57 EST

Mr. Lasalandra, I just read your comment on Lymes disease and I don't know where you got the information from but let me assure you that after being a Lyme Disease patient from 1985 to present and being on total disability. I strongly disagree with you. In 1990 I was told to go home from the hospital for they did not know what was wrong with me but I would not live longer than three months and I could die on the way home and that I would have to have around the clock nursing until my death. We could not afford that so my husband took early retirement to care for me. I could not raise my head with our his helping me. I am in a wheelchair today, I am borderline dialysis, I wear hearing aids in both ears because I have lost almost all the hearing in both ears. I have my computer by my bed for I can type in bed. This is my link to the outside world. I am still on long term antibiotics. I do not feel like that 93lb.woman who was a lovely woman and now looks nothing like she did before Lyme disease. My doctor and minister thought the picture of me the year I got bit in 1984 was my sister they did not even recognise me. You reported that after antibiotic treatment patients feel as good as if they never had the disease this is not true!!!. I am still disabled and my whole immune system is gone, I am fighting the flu now for four weeks,which most people get over in a few day to a week. I can't get over anything for weeks to months at a time. I am not just one of those unfortunate patients either. I was misdiagnosed for years, and then treated for years with long term antibiotics and still having treatments. My spine is in such bad shape that I rolled over in bed and fractured three disc. So please do not report such things unless you are 100% sure your are being honest with people. It is articles like this that hurt patients like me who suffer so bad and no one cares. For they don't know the real truth of this awfull disease. For example you know why spiirochete the tick with Lyme carries? It is the Borrelis burgdorferis spirochete. It is related to the syphilis spirochete and can do anything syphilis can and more. You do not have syphilis for it is not the spirochete but related. Check it out. Thanks for reading.
Rita West <yeshuaw7@juno.com>
- 02/03/00 17:19:36 EST

Thanks again Mike for reporting a more balance article about Lyme disease, instead of just spewing the latest JAMA report baloney that their study of 212 patients with LD report they are just fine years after they came down with LD.This is hogwash as you may have gathered from the huge response you received on this guestbook when you reported your last article on LD several months back. Many of us with LD feel that this recent garbage from Yale was released in response to patient protests in December at the OPMC in New York. The OPMC is targeting and investigating known Lyme literate physicians who actively treat LD with long term antibiotics. One physician has already lost their licence for the overtreatment of LD, yet the OPMC will tell you it had nothing to do with that, but because he kept sloppy medical records. In my view, any doctor could be cited for that. Dr Marks from the OPMC responded to letters of protest regarding this witch hunt by stating that the current medical treatment of Lyme disease is prescribed at only two to three weeks of antibiotic medications. Since when did the OPMC become physicians and become able to dictate treatment? I thought that was what we had Insurance companies for! There are hundreds of medical studies that report persisting infection of Bb after years of treatment. These studies are ignored. People are dying daily from this disease and the complications it causes. LD affects all the organs of the body. The life cycle of Bb is 28 days, how could a scant 3 weeks of antibiotic cure it? I am so sick of being sick with this disease, I know of no other except for AIDS that has met with such distain by the medical community. Thanks again for the article, it is good to see a balanced report, yours is the only paper I know of who did not just publish the Reuters article verbatim.Marta McCoy
Marta McCoy <mlmccoy@jersey.net>
- 02/03/00 15:11:12 EST

Michael....thank you for your recent article in response to the JAMA article re Lyme Disease. Nice timing on the part of Sigal et al, when Lyme Disease treatments and doctors are in such a political quandry. I am sure this is not the last we will see of them.
Happy <hapsquilt@aol.com>
- 02/03/00 10:22:56 EST

Dear Mr. Lasalandra, If everyone infected with Lyme Disease could be promptly diagnosed and treated immediately and appropriately (minimum 4 weeks), then perhaps fewer people would need treatment for continuing or reappearing symptoms in later years.However, it is much more common to experience delays of years in obtaining a correct diagnosis, and by that time the bacteria has deeply invaded many organs of the body.In my case, although the bite in 1991 was followed three weeks later by the bulls eye rash, the doctor felt the 10 days of abx given to me for what he identified as an unknown infection in my left jaw, cheek and behind my left eye, would be sufficient. By 1996 , after many of what I now know were classic lyme symptoms, I requested another lyme test at my own expense and when it came back highly positive, the doctor prescribed 30 days of doxycycline. However, about a year later symptoms returned, I again tested positive on two different tests, and having switched doctors, had to again go in search of someone with an understanding of the effective treatment of lyme. It took over a year to begin treatment, and another year to find a Lyme Literate MD able to prescribe an effective abx comination. I am just finishing 5 months of that combination of oral abx, with almost all symptoms eliminated. Had my doctor here in California not had the expertise offered through years of consultation with one of the top LLMDs in the world, Dr. Burrascano of NY, I would probably be unable to live an active and productive life. The JAMA article which states that most lyme patients have few problems in later years obviously is based on a study which does not relect the reality of the typical lyme victim. It echoes the outdated "overdiagnosed, overtreated" mantra of the group influenced by ties to the insurance industry and to research grants, anddesperately trying to justify their antiquated conclusions.Mondern scientific methods are beginning to show how and why the spiroquete can survive undetected for years, only to resurface to wreak havoc on the lives of the lyme patient. Please continue to investigate and get the most recent, unbiased studies on the treatment of patients with disemminated lyme disease.Lives literally depend on the truth being publicized. Thank you. Ann
Ann Wyatt <kann229@yahoo.com>
- 02/03/00 00:41:15 EST

I just went on line to look up Lyme disease because my husband and I just got back from the MD's. He has been sick for several months, all symtoms of Lyme and finally is being tested today. I am very glad to read your article today as it gives us hope. He has started on the antibiotics today and is being sent to a Lyme Specialist in Plymouth. Any suggestions for us newcomers to this illness. Gail DiPlatziMarstons Mills MA ( Cape Cod)
Gail DiPlatzi <GARINI99@aol.com>
- 02/02/00 22:50:11 EST

Michael, I am so pleased to see Lyme disease getting more attention by the media. Not only is Lyme greatly underdiagnosed, it is undercovered by both local and national media. In my experience, Lyme disease is as devastating a disease as any of the others we so often see covered in publications like the Boston Herald. If the public were more informed about the existence of Lyme disease, how it is transmitted, it's symptoms, and treatment, letters like this would not be necessary. Unfortunately, the general public does not seem to realize the gravity of the problem. Not only is Lyme vastly underdiagnosed, it is often undertreated. Four weeks of antibiotic treatment for someone with an infection any older than a few days or weeks is often totally ineffective. The medical profession seem to be missing the boat with the accepted treatments...if people are not treated aggressively, the bacteria continue to grow and cause numerous medical and neurological problems. As a clinical social worker, I can attest to the tremendous difficulties people with chronic lyme (including those who've been misdiagnosed and/or undertreated) suffer. I would love to see you do an expose on the many different experiences individuals with Lyme disease face. If I can be of any assitance in doing so, please don't hesitate to contact me. I can put you in touch with several people who are working to manage their Lyme Disease. Thank you for your time and your article.. Sincerely, Kim Rosen, LICSW
Kim Rosen, LICSW <KRosen1@aol.com>
- 02/02/00 20:20:42 EST

Thank you so much for your article on the JAMA Lyme disease article. It seems that JAMA is intent on publishing only articles that try to prove that Lyme disease is no big problem. It makes it so difficult for patients all over the country, as this is the journal that a lot of doctors will cite when trying to prove they know something about any disease. I think someone should do an article about the "Old boy network" that rules the whole peer-review process in such journals. The grant money goes to those who publish most often and there is the heart of the problem. Please continue to follow the Lyme disease problem and please continue to write your well-balanced articles. Thanks! Ann
Ann Hirschberg <mhhirsch@aol.com>
- 02/02/00 20:19:24 EST

I am outraged at this article trying to underhandedly present Lyme Disease as a mild curable illness! Although many people who have had Lyme Disease and caught it early usually do well,the majority of Lyme Disease patients I have spoken with do not! Most are now disabled and live in constant pain.Why would an article like this come out now? I believe it has much to do with the insurance industry. They know this disease is serious and costs them thousands of dollars each patient. Won't someone listen and research what is really going on here? Why are the doctors who treat this disease being persecuted? Patients aren't asking for narcotics; they are asking for antibiotics!
Outraged! <hispilgrim@jps.net>
- 02/02/00 17:23:39 EST

regarding your article on lyme. perhaps a month of antibiotics will cure lyme disease if you are treated immediatley after getting bitten, but if you went untreated and undiagnosed as i did then it is my experience that i have only regained my health through long term antibiotic treatment. i had serious physical and neurological symptoms and went to 4 different hospitals, saw 8 different doctors. i was told i had lupus, chronic fatigue, fibromyalgia and also that i just needed more antidepressents and my pain would go away. yes i had lyme tests, as i have had repeated tick exposure, yet the test always came back neg. too bad all these doctors werent aware how inaccurate the tests are. i was able to find this information on the internet. i also started to investigate lyme disease myself and found interestingly that i had 67 of the 70 symptoms listed. i found a doctor in ny who was an expert in the illness and was then diagnosed w/ lyme. i have been on and off antibiotics for over 2 years and have my life back. how interesting that i should get well from long term treatment. you need to talk to people who have the disease and have suffered debilitating pain because of being misdiagnosed by doctors who are in the pockets of the insurance companies. i would like to see the herald do a series of interviews w/people who have chronic lyme to hear their horrific stories of being misdiagnosed and mistreated by doctors in the boston area. i could go on but ill spare you michael.please know that i would be glad to have you contact me at any point to discuss this further. my story and my cause needs the medias attention. we need your help to bring this information to the public as im sure that there are many thousands of people who have had my same experience and it will continue. thanks michaelfeel free to contact me.
chris teubner <cjt48@aol.com>
- 02/02/00 15:44:12 EST

Michael,Those Yalies don't give up, do they? The study (how do they manage to focus those phone calls?) was for people that managed to get antibiotic treatment in the early stages of the disease. Statistically, that hasn't been a problem or a controversy. What has been a problem has been 1) the changing definition of "official" Lyme. It keeps getting more stringent as the numbers grow. If the numbers get too big, somebody will have to pay attention, and the somebody that hasn't been paying attention should get more than a slap on the wrist; and 2) why do these Yalie studies keep excluding all the Lyme people that were diagnosed too late to meet the "official" early Lyme definition, but were still held to the "official" duration of treatment for early Lyme. At least it is good to see in your article that these wonderful doctor/researchers are "volunteering" their "affiliations" up-front. At least this doctor didn't have to denigrate us chronic long-term sufferers as whackos, and term our disagreement as political. I also note another doctor downplays the other doctor's conclusions. Imagine that. James Martin, Euless, Texas
R. James Martin <rjamesmartin@yahoo.com>
- 02/02/00 12:43:14 EST

Re: "Lyme disease treatment... 2/2/2000article didn't define at what point after diagnosis were patients treated.Chronic lymes requires more aggressivetreatment.I've had Lymes for 14 yrs.; 2yrs of antibiotics didn't stop the pro-gression of disease.Don't feel "comforted" by the study. Dr. Shapiro,as a paid consultant for Ins. Co.s cannot be considered as an unbiasedresearchist & in my opinion, has littlecredibility in this instance.Studies such as this can lull the medical profession into believing lymes is lessof a critical problem. If we're not careful,lyme disease will become more rampant than Aids & everyone will be vulnerable. Please keep your focus on the Lyme problem Mr.Lasalandra!!!Susan S., BC, Canada
Susan Starchuk <Suesgrdn@aol.com>
- 02/02/00 12:36:02 EST

The JAMA article on Lyme disease uses a very small subset of the Lyme population and then extends the results to the whole class. The people they studied were the ones who had been identified and treated early. Those are the people who are likely to get reported. If you have EM but no doctor sees it or the blood tests (inaccurate many times) do not back you up, or you wander around for years trying to find someone who can correctly diagnose Lyme, then you aren't treated early or cured easily. Infectious disease reporting is typically only about 10% of the actual total,and in the case of Lyme,may not even be that good. So, all things considered, I think it is not honest to say that the people they studied in Conn. were typical of all Lyme patients, but of the ones most likely to give them the results they were looking for. It is also interesting that the principal author was at Yale, a known hotbed of PC on Lyme. And the editorial which accompanied the JAMA article was written by a professor at SUNY at Stony Brook, also in the same time warp. And did you know that the principal author has since moved to SmithKline Beecham? They make the LYMErix vaccine which has been implicated in severe arthritis in animal studies and there is at least one lawsuit against SKB for harmful reactions caused by the vaccine. It is so unfortunate that this vaccine (with Dr. Steere as a research collaborator) was rushed into production without adequate safeguards. Other vaccines are in the pipeline, hopefully better formulated, because a safe and effective vaccine is so desperately needed. Thanks for your continued interest in the Lyme issues.
Lou <overman74@hotmail.com>
- 02/02/00 12:27:21 EST

The study reported in the JAMA conductedby Dr. Shapiro is a joke. First, there is no test in the world that can say ifa person definitely has or does not have Lyme. The people in the study couldhave Lyme. These people were not even tested! No one can tell me that having Lyme can produce a good outcome. I havebeen suffering for almost ten years.This diease is so complicated no oneshould be throwing away money on such astupid and inconclusive study. Lets spend all our Lyme money on finding away to kill this bacteria and helping the thousands of people who have been inflicted with this horrible disease.
Marge O'Brien <Mcpepper@aol.com>
- 02/02/00 11:40:07 EST

Thanks Michael for keeping on top of these issues in Lyme Disease. More doctors need to be aware of the unreliability of the tests for Lyme Disease. That's why it's so easy to make these studies say what the authors want them to say. They can tailor their studies by deciding what criteria they want to use to include or exclude certain populations with the disease. This way, they know ahead of time what the outcome of their study will be based on how they defined Lyme Disease in the first place. In this case, people who meet the stringent definitions for Lyme Disease are more likely to receive adequate antibiotic care EARLY. So their chances of being cured ARE better. However, studies like these hurt MANY people in the REAL world who are going undiagnosed or incorrectly diagnosed for months and even years. Their chances for a good outcome are slim to none. These studies do nothing but enforce doctors' ignorant notions that ALL Lyme Disease is easy to treat and cure. Thanks again Michael for this article.
Sharon <shagoodman@aol.com>
- 02/02/00 11:28:31 EST

Thank you so much for listening to us. We really need your help. That JAMA article was held up to me yesterday by my HMO physician as his reason for not treating me more. He says he absolutely believes that I have Lyme but that I will be just fine because of it. I used to be a very pretty woman but each day my upper eyelids are swelling downward more & more. I am becoming disfigured. It is progressing, not staying the same. Sometimes when the swelling is really bad I look like a monster. Those people were all caught early, not like me. I was chronic already when diagnosed. Please continue to cover these issues- do you know all abou the witch hunt in NY>? 68 doctors who treat Lyme are being targeted by the OPMC, the most well-known doctor being Dr. Joseph Burrascano. If he is censured, no one will treat us. ALready doctors are refusing to accept new Lyme patients. This disease is horrible.Thank you-Sarah ELizabeth Leonard Weiss
Sarah*) <AramSarah@cs.com>
- 02/02/00 10:16:05 EST

Dear Michael...thanks for reporting on the JAMA article re Lyme Disease. It is so unfortunate that this is the information that our doctors are being fed and most have no idea of the real issues and controversies in the state of lyme disease. I believe it is only by public exposure of the inadequacies of the professional literature that gets through the "system" that we are going to alert the general physician population to the problems in diagnosing and treating lyme disease. I am suggesting to any doctor I have contact with not to believe me, but do some networking with their peers and ask for both sides of the story.....to do their own investigative work. You are helping the victims of Lyme Disease by spreading the word of the controversy. And God knows we need all the help we can get!
Happy <hapsquilt@aol.com>
- 02/02/00 09:27:05 EST

Again, so much NOT said. Dr.Shapiro stated in an interview yesterday, Feb 1, on WFSB-TV (hartford, ct) that his study ONLY LOOKED AT PEOPLE WHO WERE DIAGNOSED EARLY IN THEIR INFECTION.THE QUESTION OF LONG-TERM OR LATE-DIAGNOSED LYME DISEASE WAS NOT ADDRESSED IN HIS STUDY. This study, therefore, shed no new light on Lyme Disease and its treatment and outcome since it is generally agreed that early diagnosis and prompt treatment offer the best chance at a cure. This study still leaves thousands of patients who, for whatever reason, do not fit the CDC reporting criteria, at the mercy of ignorant MDs who will never recognize LYME unless they see an embedded tick, a bulls-ey rash, or a swollen knee. And the few enlightenedMDs who are willing to look beyond thereporting criteria and see LYME for what it really is will continue to be villifiedand persecuted - - not to mention prosecuted!The study of late-dignosed, persistent/chronicLYME disease needs to be funded. If wecontinue to funnel money to studies thatonly re-discover what we already know, wewill never settle the ongoing debate - - and, most importantly, thousand of peoplewill continue to suffer needlessly.
greg gauthier <ggauth2702@aol.com>
- 02/02/00 09:20:30 EST

Mr. Lasalandra,I was referenced your article from the Lyme newsgroup.I have read the piece, and thank you for your reporting. My 13 yr. old daughter is currently on IV antibiotics for Lyme and were hoping this will eradicate the disease for her.We are new to Lyme disease and have found that it is such a political football, at this point. Thank you for your research in reporting. It helps those with the disease that you let the public know the facts about Lyme.As a side note: My brother-in law (Ed Hayward) also works for the Herald.Again, thanks for the report.
Linda Donahue <pdonahue@frontiernet.net>
- 02/02/00 08:06:01 EST

Lyme disease is devastating familiesadults and children. The doctors whoare supposed to be protecting us andproviding adequate medical care are notIt is a very large issue and a good or'better yet, a great investigative journalist could shortly discover thecrimes that are being commited by moneyhungry doctors. Where is the media? Wehave always trusted you to get to the bottom of corruption and root it out.We need your help
Lyme patient <user763213@aol.com>
- 02/02/00 03:24:07 EST

Dear Mr. Lasandra, Thanks for writing a balanced article that aims to dig deeper than the sppon-fed press release that you nodoubt received. Long will be the day before JAMA will even consider for publication anything about Lyme Disease that does not upset the status quo that this disease is easily treated for all patients. Thank you for interviewing support group leaders and doctors who keep an open mind and are knowledgeable about the truth.Rick LaferriereSouth Attleboro, MA
Richard Laferriere <Marennes@compuserve.com>
- 02/02/00 01:14:15 EST

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