I am writing to you because of your families unfortunate familiarity with Lyme disease. My condolences, as my family all too well knows the pain, suffering, and change of life’s fortunes it can bring.
My wife was a technical writer with NASA, I was a United States Marine and pretty darn good computer system engineer, and our daughter a budding athlete and magnificent singer. Starting out as a Navy brat, and later as a career Marine, I’ve traveled throughout this great land of ours (including NY, NJ, MA, CT, NC), so there is no telling where we first acquired our life-altering companion.
All three of us do indeed have Lyme. Two of us are now completely disabled. Only through the power of the internet are we able to keep abreast of what the mass media doesn’t have time to report. Only through the power of the internet are we able to gain the support of other like sufferers that society doesn’t have time or inclination to give us.
In any science, be it medical or computer, we work with what is called body-of-knowledge. Cutting to the chase, this means, the more we learn, the greater the foundation of knowledge those that follow have to work with.
In the case of Lyme disease, those of us diagnosed early on with Lyme arthritis were treated like it was any other arthritis, which turned out to be the wrong thing to do. Not through evil intentions. The body-of-knowledge for arthritis said that was the right thing to do. That experience said that a new body-of-knowledge had to be built for Lyme.
This link is for Dr. Alan Steere, the physician that "discovered" the cluster of arthritis in children around Lyme, Connecticut that gives the disease its current name. Going to https://www.angelfire.com/biz/romarkaraoke/vent002.html, you will read that he had to try different treatment modalities to obtain "cures", thereby giving birth to the new Lyme body-of-knowledge.
This link is for Dr. Raymond Dattwyler. While not a favorite physician of many, he too has grown the Lyme body-of-knowledge. Rather ineptly / inelegantly titled "If Lyme is so easily cured, why did Dattwyler…", it may be found at http://www.geocities.com/HotSprings/Oasis/6455/dattwyler.html. This too shows that the body-of-knowledge about Lyme had to be grown, that what we thought we knew wasn’t necessarily so.
Unfortunately, this body-of-knowledge became stagnant once it was published. It became the treatment standard that insurance companies reimbursed for.
That stagnant body-of-knowledge didn’t account for those people that relapsed after the initial "cure", or those that weren’t cured and got progressively worse. Some doctors were comfortable with the body-of-knowledge that doctors Steere and Dattwyler developed and treated with it accordingly. Other physicians weren’t comfortable with the growing numbers of relapses and the chronic cases, and sought to expand the body-of-knowledge, to force the frontiers of medical science, to bring the forgotten sufferers into the fold of the cured.
This is where pioneers like Dr. Burrascano and Dr. Horowitz come in. Dr. Burrascano probably outlined this dichotomy between the stagnant and expanding body-of-knowledge best in his 1993 testimony before the US Senate entitled "Lyme Disease: A Diagnostic and Treatment Dilemma"; it may be read at https://www.angelfire.com/biz/romarkaraoke/testDrB.html.
My wife and I were disabled and disfigured during the doctors Steere and Dattwyler leadership era, our daughter was able to maintain an active, although with reduced expectations, lifestyle, using the Dr. Burrascano protocol.
We know that the Lyme body-of-knowledge is incomplete; there is no cure as yet. Until a 100% cure with no relapses and no side-effects is found, we can’t close the book on the growth of the Lyme body-of-knowledge.
This is what Ms. Monica Miller wished to talk to you about yesterday. The New York Office of Professional Medical Conduct (OPMC) has publicly embraced the stagnant body-of-knowledge. Where Lyme treating doctors are concerned, no, make that all doctors, an expanding body-of-knowledge must be used in all cases. Seeking to eliminate practice variations is dangerous.
Washing ones hands between childbirth cases used to be considered strange. At the time, no other physician did it. There was no evidence that washing ones hands directly contributed to the decline in the deaths of mothers, but if it works, why fight it.
As we demand that the OPMC learn to give fair hearings, so too do we wish that some day you give Ms. Monica Miller a fair hearing.
R. James Martin - Euless, Texas
A Tick Made Me Sick
A TIICS Is Keeping Me That Way
(TIICS = The Insurance
Industry Captive Specialists)
https://www.angelfire.com/biz/romarkaraoke/james.html
