Your Cover story: Best Doctors 2000: Special Focus

[Guest guest]

I was extremely pleased to read your recent article 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.

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. My wife however is a different story.

About eight years ago she developed horrific pain in her face. In spite

of some classic symptoms like Bell's Palsy, positive urine antigen tests, and

positive Western Blot tests, 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. This half hearted

treatment program, brought on in part by his fear of ridicule from the

medical community and 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partly due to outdated and uninformed notions about the disease, the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. "

One fateful Christmas season God apparently decided that she had had

enough and it was time for him to help. We found a wonderful Neurologist

from Philadelphia who specializes in pain management who devised a pain

management program for her 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 focusing on the 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 and they always stack the deck in their

financial favor. 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

a known Lyme Literate Doctor who was firmly in the other court. Cigna made a

mistake. They sent us to a doctor who belonged to that group of doctors who

believe that Lyme Disease requires a clinical diagnosis and that listening to

the patient, and examining the patient is the way to develop a clinical

diagnosis. He followed the Burrascano protocol. He 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 of 70, had

areas of her brain that had been damaged in a pattern specific to Lyme

Disease. He submitted her report to the insurance company including these

test, previous positive Lyme tests, clinical symptoms that he said were

typical of active Lyme Disease, and a bibliography of scientific studies that

demonstrates the existence of chronic Neurological Lyme Disease. His 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. While the three doctors

could not agree on whether 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.

I apologize for the length of our story. I have recounted it for you for

several reasons. I want to impress upon you that we know 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. 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. 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. In fact, all of the doctors that you sight 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 the most sophisticated and

respected newspaper in America entitled " Best Doctors 2000-Lyme Disease. " To

accomplish this feat just days after your sophisticated and respected

newspaper ran the most complete, accurate, and unbiased account of the Lyme

Disease controversy I have ever read is indeed clever...and unethical, and

sneaky, and as usual for these political scum, unfair and misleading.

As a footnote to my story about the Lyme Disease Nightmare that my family

has endured for the past 11 years (my 20 year old daughter lived her own

nightmare 11 years ago and today is a highly successful college student,

Sorority VP, former HS Class president, and a member of the Dean's List.

Long term antibiotic therapy cured her), Helen has been treated since that

fateful holiday season two and a half years ago by a sensitive, strong,

intelligent, knowledgeable Lyme Literate doctor. This doctor follows the

ph Burrascano protocol in every detail. He has treated her aggressively

for multiple tick borne diseases. She has been 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 you 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. 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 good

guys have science on their side. 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 that he has never seen, touched, spoken to, or examined. Yet

somehow he feels 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. "

H. Fasy