posted
There are links to email him. I would like to know if any parents have had experiences bringing there children there and if they were successful or not? He must have a lot of complaints against him I would think....because the Lyme kdis would never get better under his care....
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
| IP: Logged |
RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
this guy he is the one who said my niece didn't have lyme what a %$%$#^. she is better and in college now because of doctor J in ct.
yes a lot of people go there he wouldn't know if it was lyme if it was right next to him or if a tick bit him.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I sent this to them just now... to the one writing the press release.
Quote from Press Release- "Shapiro and his colleagues maintain that ``chronic Lyme disease'' is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments is not warranted."
You know, they told my thirty year old cousin that same story and darn her sorry self- because of their unproven theories she wasn't able to function, became completely disabled and spent most of her time in her wheel chair watching her little boy play baseball. She eventually died because they refused her life saving antibiotic treatment.
And so did my dad. And so did my God mother. They didn't have antibiotic treatment, per your doctors orders, and the untreated Lyme and tick borne infections eventually killed them too.
Me? I was fortunate enough to get those "expensive" and "dangerous" antibiotics. Yes, I did have to suffer through a yeast infection as a side effect, but within a week of treating it I was just fine. Well, relatively speaking I was fine.
Because of the original delay in treatment and the lack of it (before I found a doctor who put patient care FIRST) I became totally and permanently disabled and legally blind from under treated Lyme and tick borne coinfections.
And just so you know, I think your press release forgot to mention the Attorney General's investigation into the IDSA (and some of your doctors) for antitrust violations, monopolization, and exclusionary conduct relating directly to the same guidelines your doctors wrote and continue to promote.
To note- the article's authors didn't list that legal action as a Conflict of Interest in their article, which I do believe is a no-no.
It seems Yale's reputation continues to go further down the hill by keeping those doctors on board, along with the health of Lyme patients who are refused treatment because of them. Shame, shame.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My letter:
Dear Dr. Shapiro,
You were quoted in a recent press release from Yale and need to respond even though I don't expect you to read or consider what I have to say. Nor do I expect that you will respond. Still, I am writing you because of those who write from your position, you seem to be the most accessible and least condescending.
There is a clear flurry of activity on the part of Yale and the IDSA designed to drown out our voices but we are fighting for our lives and, actually, I think we are winning. Contradictory clinical evidence is starting to stack up, despite the IDSA's attempts to prevent the emergence data that challenges it's position on Lyme disease and the control its leaders exercise over research funding and publications. I am aware of AG Blumenthals' investigation and hope more AGs follow his lead. Hopefully, he has been notified that IGENEX was denied display access at the IDSA conference taking place in San Diego this weekend.
As best as I am able to determine, I went undiagnosed and thus untreated for about twelve years. When I was finally diagnosed, I had about twelve diagnoses, give or take a few, and those were just for the problems I brought to physicians' attention. The most problematic symptoms included chronic bronchitis (some physicians were starting to suggest I was developing COPD), disorientation (I was geting lost two blocks from work), constant tendon pain (I was unable to turn a doorknob), proprioception difficulties (I was starting to drive like a codger and had difficulty coordinating my left foot and right arm well enough to shift gears when driving, despite always having driven cars with stick shifts), and severe fatigue (a half hour of yard work would put me to bed for a couple of days).
I have now been treated for almost five years by a family practice physician who does not speciallize in Lyme, at all. He is on my insurance plan and is not exploiting me financially, as the IDSA is prone to alledging. He does, however, believe that chronic Lyme exists and it is his clinical experience that antibiotics reduce these patients' suffering. It's also his experience that among people who have had Lyme a long time, over one year, discontinuation of antibiotics almost invariably leads to relapse.
In contrast to my condition upon starting treatment, I have since resumed weight lifting and bicycling and have literally built my own house. I have not had bronchitis in four years, have resumed writing, and have been promoted to professor. I may not have had chronic Lyme disease but, whatever it was/is, antibiotics have been a very effective treatment. At this point, my diagnoses are hypothyroidism (secondary to thyroid oblation done to treat unremitting infectious thyroiditis), low testosterone which is being treated effectively with hCG, and chronic Lyme disease. My very well known urologist, who does pioneering work in treating male infertility, believes that the Lyme disease has affected my pituitary gland and has not questioned my need to, as he says "keep it beaten back" with antibiotics. I do still, unfortunately, have occasional days in which concentration and word recall are problematic but I am able to function around that.
I have a student who spent years in a wheelchair with a diagnosis of MS. When treated with IV antibiotics, she was able to begin walking and now walks almost normally. She does still have foot-drop and wears a small plastic brace.
One of my colleagues is also diagnosed (this is an edemic area in Northern California) and has been in treatment for years. She suffers mainly from pain and perceptual distortions but teaches, engages in private practice, and works a half time professional job. She works about sixty hours a week and is supporting her husband while he studies for a master's degree.
In contrast, a couple of years ago, a local young man of twenty-one died unexpectedly in his sleep. He had Lyme disease since about age ten and had also spent several years in a wheel chair. At the time of his death, he seemed to be doing fairly well, although not feeling quite as good recently, had been engaging in amateur rodeo riding, and was working full time. He had discontinued antibiotics. Due to his long illness and his father's prominent position in the local medical care community, every physician in town either knew him or about him.
Ted's death seems to have had a profound effect on the local physicians. Since that time I have had only one physician, who was working at a walk-in clinic, express skepticism about my diagnosis and treatment. In fact, they generally express interest in my situation and the treatment that has allowed me to have a pretty good and stable remission.
I am telling you all of this to try to point out that clinical evidence out in the field is starting to turn the tide. The activism of author Amy Tan and musician Daryl Hall, and a number of others is also helping. Hopefully, you can consider the information that I am presenting and begin to question what is going on. How is it that the debate is allowed to be controlled by a coterie of about ten? Why is it that the limitations of Wormser's study of "long-term" treatment with antibiotics aren't being taken into consideration? Why is it that, if post-lyme syndrome is real, it isn't actually being investigated? Academic medicine is about learning new things. I believe that, if the IDSA actually believed PLS was real, they would be all over it writing papers and filing patents. Why is there no research on the actual treatment of people like myself, whom the IDSA sort of acknowledges exist? How is it that chronic Lyme diesase is "Ill defined" and PLS isn't? People, physicians included, are beginning to ask these questions.
Recently, while traveling in Texas, I went to a walk-in clinic because I suspected I had conjunctivitis. My conversation with the physician included a discussion of the Lyme wars. I asserted that we are going to win becasue the facts are on our side and she immediately and fully agreed.
Dr. Shapiro, this may be naive of me but I hope that you will consider my points. hopefully, I have been civil and logical despite my anger over the abomination in which you are participating.
XXXXXXXXXXXXXXX, Ph.D. Professor California State University, XXXXXXX XXXXXXXXXXXXXXXXXX
quote:Originally posted by Tincup: Quote from Press Release- "Shapiro and his colleagues maintain that ``chronic Lyme disease'' is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments is not warranted."
A different treatment that works better/quicker is fine by me, but until Shapiro offers such an option his position will continue to be untenable.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
David...
Beautiful ... and exactly what is needed!
Thank you for taking time.. and I am sure it was a considerable effort.. to write this letter.
Having watched him over the years.. I am not sure you will get a reply.. but I hope you do.
If you don't.. may I suggest sending your letter to the Administrators at Yale? Especially those who sign the pay checks?
If he won't listen.. maybe they can tweek his nose till he does. Or his pocket book?
posted
I think what strikes me most, aside from the blatant disregard of the severity of our symptoms, is this: If long term antibiotic treatment isn't the answer, what is? If they are going to make such a statement, what option(s) are they offering?!
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey TC,
I know I have said it before...
But, I just wanted to say again, that I am so very sorry for your losses from this devastating disease.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic