E-mail from: Liveitup2@cs.com
Date: Thu, 1 Jun 2000
Subject: NY Magazine Cover story: Best Doctors 2000: Special Focus
I was extremely pleased to read your recent article in the NY Times about the raging debate in the medical community concerning Lyme Disease. It was one of the few articles I have read that accurately described the controversy and presented an unbiased, honest viewpoint.
Conversely I was greatly disappointed to read an article in your publication entitled "Best Doctors 2000". CLearly New York Magazine was duped by the American Lyme Disease Foundation [ALDF] into promoting this biased list of doctors as the best in diagnosing and treating Lyme Disease. Read the NY Times article about the medical controversy raging over Lyme Disease and you will understand that this list is stacked with doctors who support one side of the controversy. The wrong side.
My family has been living the "Lyme Disease Nightmare" for nearly 12 years now. While my two children and I have all had the disease, been treated for Co-infections, and have been aggressively treated for Lyme Disease with long term antibiotic therapy as well, we have gotten better.
While we know enough about these tick borne diseases to know that one can never be sure that we will not relapse, we have been pretty much symptom free for several years now.
Today my two beautiful college age daughters are healthy, intelligent, successful, and productive contributors to our society. We thank God every day that we were able to find sensitive, caring, Lyme literate doctors to treat them quickly and aggressively with long term IV antibiotics. While we know enough about these tick borne diseases to know that one can never be sure that we will not relapse, we have been pretty much symptom free for several years now. My wife however is a different story.
About eight years ago she developed horrific pain in her face. In spite of some classic symptoms and evidence like Bell's Palsy, positive urine antigen tests, and positive Western Blot tests, chronic fatigue, neuralgias, arthritic pain, and neuritic pain, she was shuffled from doctor to doctor, always being told that "it couldn't be Lyme." When she finally did find a doctor who would accept a diagnosis of Lyme he was unwilling to treat her aggressively enough to eliminate all the symptoms.
During this half hearted treatment program, brought on in part by his fear of ridicule from the medical community, financial repercussions from insurance companies, and partly due to outdated and uninformed notions about the disease, the spirochetes bore ever deeper into her cells. Every time she would be taken off of the antibiotics the symptoms would return, increasingly more virulent each time.
Our insurance company at the time, CIGNA, was becoming more and more reluctant to pay for the very expensive antibiotic treatments. While my wife was gradually dying, the insurance company was rapidly becoming impossible to deal with. While my wife was curled up in a ball suffering violent meningitis attacks, and living with intractable neuritic pain and loss of mental function, the insurance company was denying coverage and the doctors were telling her that "your tests are negative, or at least going in the right direction."
One fateful Christmas season God apparently decided that she had had enough and it was time for him to help. Through a dear and close friend who holds a doctorate in nursing and specializes in pain management we were put in touch with a wonderful neurologist from Philadelphia who specializes in pain management. She developed a pain management program for Helen that at least allowed her to get through most days without seriously contemplating suicide.
CIGNA meanwhile was putting us through hell with denials. I was spending 30% of my days filing appeals and trying to get someone to deal with the human aspect of the case rather than using there resources to limit their responsibilities and costs. As I reached my last appeal with CIGNA they made a very fortuitous mistake. They told us to choose a doctor from a list of four that they gave us. They promised to follow the recommendations of the doctor we chose from their list.
Now, it is well known among those of us who live with this "Lyme Nightmare" that insurance companies make all of the rules, change them at will, and always stack the deck in their financial favor. Consequently we expected the doctors on their list to be from among the Dr. Steere camp. "Three weeks of oral antibiotics and you are cured". If symptoms persist then you are suffering from some undefined malady they call "Lyme Disease Syndrome".
But God was indeed looking out for us this holiday season. ! One of the doctors on the list of insurance company consultants was known in the Lyme Disease community to be a Lyme Literate Doctor firmly committed to the patients and the concept of persistent, chronic infection.
Cigna had made a mistake. They had sent us to a doctor who belonged to that group that believes that Lyme Disease requires a clinical diagnosis and that listening to and examining the patient is the way to develop a clinical diagnosis. She followed the protocol of Dr. Joseph Burrascano. After giving her a thorough examination she ordered a Spect Scan and a Neuro-psych evaluation on my wife, who by this time was completely dysfunctional from pain, depression, loss of muscle strength, meningitis attacks, and severe fatigue.
These tests showed that Helen, who had been a bright, clever, outgoing woman and a practicing RN, now had an IQ well below normal. She had areas of her brain that had been damaged in a pattern specific to Lyme Disease. The doctor submitted her report to the insurance company. The report included these new test as well as previous positive Lyme tests, and a history of clinical symptoms that she said were typical of active Lyme Disease, and a bibliography of scientific studies that supported the existence of Chronic Neurological Lyme Disease. Her report confirmed that Helen had "one of the worst cases of Chronic Neurological Lyme Disease that I have ever seen."
Clearly this was not what CIGNA wanted to hear. They proceeded to allow six more weeks of IV antibiotics. They had little choice. However, determined not to make the same mistake twice they enlisted three more doctors to render an opinion on my wife's case.
When I asked why it was necessary to hire three new "experts" after getting such a clear and unequivocal diagnosis from their own consultant they mumbled some nonsense about the complexity of the case. The "Assistant to the President" who was a pleasant young woman assigned to problem cases and charged with the responsibility to tell half truths and outright lies in an effort to dupe people like myself, was clearly uncomfortable with her role.
I asked her how she managed to sleep at night knowing that she was contributing to such a travesty and jeopardizing the lives of sick people. She responded by mumbling that she did not in fact sleep well at night. She apologized to me and said that she hoped she would not have to do this job much longer. She was clearly another victim of this "Lyme Nightmare". I often think about her and pray that she has found peace in her life and moved on to a job that will give her the satisfaction of knowing that she is using her talents to help people rather than hurt them.
While the three new 'hired guns" that Cigna had now brought in to review the case could not agree on whether or not she had the disease, they all agreed that further antibiotic therapy was not necessary. They proceeded to write a letter stating that they would pay for no further IV treatments--ever. This, in spite of the fact that the six weeks of therapy had improved her condition but had by no means eliminated all of her symptoms.
They refused further IV treatments forever in spite of the fact that it is well known that one can be infected countless times by additional subsequent tick bites. My wife was not only being refused necessary treatments recommended by the insurance company's own consultant, but was now being left without coverage for any future infections she might contract. Ethical?
I apologize for the length of our story. I have recounted it for you for several reasons. I want to impress upon you that my family knows first hand of the horrors of this disease. We know first hand of the politics of this disease, of the powerful insurance company financial interests who will stop at nothing to limit their liability inherent in their contract with their subscribers.
We know first hand of the doctors who are benefiting financially by working for the insurance companies to give them the answers that allow them to limit their financial responsibilities.
Several weeks after being told by these latest Insurance company consulting doctors who all maintained that no further IV antibiotic treatment was necessary, we mistakenly received an EOB (explanation of benefits) from the insurance company that showed that they had paid $750 to a Dr. Robert Schoen. Since Helen had never been to Dr. Schoen we assumed this was one of the doctors who had given the Insurance company the answer they had wanted.
I called Cigna to inquire about this payment to Dr. Schoen and was told that it was a mistake and they would credit our account. We also knew that Dr. Schoen was one of the Yale Rheumatologists who regularly testifies and writes opinions for insurance companies espousing the unscientifically based opinion that long term antibiotic therapy is not effective in treating Chronic Lyme Disease because there is no such thing as Chronic Lyme Disease.
The point is that Dr. Schoen is also a member of the American Lyme Disease Foundation [ALDF]. In fact, all of the doctors that you cite as "Best Doctors 2000" are on the same side of the controversy. The wrong side. ALL OF THEM ARE MEMBERS OF THE ALDF. All espouse the Steere school of thought.
Consulting for insurance companies is a common practice and they are dearly paid to do it without ever examining a patient. All are University based clones of Dr. Steere who are firmly committed to the doctrine that long term antibiotic treatment is seldom if ever warranted. All espouse the unscientific convenience that long term symptoms are somehow not the result of persistent infection but rather caused by some mysterious and undefined "Syndrome." How ludicrous.
Ludicrous as it is these doctors are clever. Somehow they managed to get their names, and only their names in an article in your magazine, in the most and respected newspaper in America, entitled "Best Doctors 2000 -- Lyme Disease."
To accomplish this feat just days after the NY Times, the most sophisticated newspaper in the country, ran the most complete, accurate, and unbiased account of the Lyme Disease controversy I have I have ever read is indeed clever, AND unethical, and sneaky, and as usual for these political scum, unfair and misleading.
I encourage you to read the NY Times article and investigate this controversy carefully. Learn about the "war" that is raging around this disease, and seek out a more complete and unbiased group of doctors for your list. Clearly the American Lyme Disease Foundation, a tool of Dr. Steere, planted this article and list of doctors in response to the NY Times article. Please hurry before more unsuspecting victims fall prey to these ethically suspect doctors and become unrecognized statistics of the "Lyme Nightmare."
As a footnote to my story about the "Lyme Disease Nightmare" that my family has endured for the past 11 years let me give you the rest of the story. Helen has been treated since that fateful holiday season two and a half years ago by a sensitive, strong, intelligent, knowledgeable Lyme Literate doctor. His name is Dr. Joseph Burrascano.
In the face of threats against his medical license he has treated Helen and countless others aggressively for multiple tick borne diseases. He has placed Helen on various types of IV and oral antibiotics for most of that time. She has been carefully monitored by this doctor with weekly blood tests, liver enzyme tests, follow up Spect scans, follow up Neuro-psych evaluations, etc.
In spite of the "beliefs of the 'Best Doctors 2000' that long term antibiotic therapy is dangerous and unnecessary and that a 30-60 day course of antibiotics kills the infection," my wife continues to improve.
While there have undoubtedly been ups and downs over the course of her treatment, she has literally "risen from the grave." Where two and a half years ago she could not get out of her bed, today she is running a Lyme Disease Support group, she is taking Pilates courses at the YMCA to try to regain some of her muscle strength, and she is once again beginning to resemble that bright, articulate, outgoing woman that succumbed to the Lyme Nightmare" eight years ago.
I implore you. Do not allow yourselves to be duped by the ALDF. Please make sure that you continue to follow this story in the spirit of that wonderful article that your media cousins printed a few weeks ago. Please continue to be sure that you are presenting this story completely, honestly, and accurately. Check your sources. You have entered a battlefield of mythical proportions here.
This is a war. As in all wars there is a great deal at stake for many people. As in all wars there are people who will pretend that "all is fair." I have seen first hand how some of the players will sacrifice human life to protect their position, their reputation, power, and their financial gravy train.
Please immerse yourself in this story. Only then will you be able to recognize the good guys from the bad. The good guys don't profit at the expense of human life. The good guys are the ones who could have a much easier life if they were doing something else.
The bad guys collect thousands of easy dollars each year by giving ethically suspect medical diagnoses and testimony for insurance companies.
THE GOOD GUYS HAVE SCIENCE ON THEIR SIDE.
The bad guys ignore the ever growing scientific evidence mounting against their position.
Immerse yourself in this war and you will see that the good guys are the doctors who are fighting for thousands of chronic Lyme Disease sufferers while risking their reputations and their livelihoods.
The bad guys are the ones who will take 750 pieces of silver for writing a few paragraphs of unscientific drivel that might destroy the life of a woman who he has never seen, touched, spoken to, or examined. Yet somehow he feels ethically capable of rendering a diagnosis on a disease that no one argues requires a "clinical" diagnosis?
Get really involved in this story and it will become as obvious to you who the good guys are as it is to the thousands and thousands of innocent victims who are living this "Lyme Disease Nightmare!" an quite literally depend on these heroes, these good guys, for their survival...for their life.
John H. Fasy
My husband and I discussed the letter he finally sent to the NYTimes in response to the "good article." I contributed; but ... I must tell you that he wrote this letter and I want to publicly congratulate him. He did an excellent job. I dare them to print it.
Helen in Robbinsville, Proud wife to John