I'm interested to see if ther is anyone here that has been seen by or has been treated by these fellows? Or maybe someone here was one of the original lyme children that launched Steere's carreer?
A friend of a friend does not count, only first person accounts please!
If so do they practice what they preach in the IDSA guidelines or were you one of the rare few that did not fit in the "most patients respond to xxxx" category.
Enquiring minds want to know.
PM me if you like.
Thank you.
Posted by Michelle M (Member # 7200) on :
Likely, all their "post lyme syndrome" patients are dead.
Michelle
Posted by mjo (Member # 7876) on :
Good one Michelle! Up! Phantom patients, where are you?
Posted by Aniek (Member # 5374) on :
Their on the fibromyalgia and chronic fatigue boards.
Posted by elle108 (Member # 11730) on :
My daughter was originally referred to Dr. L.S. in New Brunswick...who ignored her CDC positive WB from LabCorp and told her she had fibro and would be better if she took AMbien and did aerobics...Wel,, that was 5 months ago...she did follow his recommendations and runs ofn the treadmill regularly...BUT...she is seeing an LLMD because her experience with Dr. S was akin to spending an hour with a snake oil dealer.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Aniek: They're on the fibromyalgia and chronic fatigue boards.
YUP! Posted by bettyg (Member # 6147) on :
thx elle for sharing your daughter's experience..
Posted by Lymetoo (Member # 743) on :
up
Posted by JRachel11 (Member # 12891) on :
I have seen Dr. Dattwyler (when he was at Stonybrook), Dr. Halperin (when he was at North Shore university hospital) and I had an appointment to see Dr. Wormser, but thank GOD I cancelled that one after looking him up online and reading he was just like all the others I had been to.
I am an unusual case of Lyme though, I have positive tests and known tick attachments and EM rashes, I have a lot of very severe symptoms, paralysis, seizures, every symptom on Burrascano's list..etc.., it would be pretty hard for any doctor to deny that I have it, so even the IDSA quacks didnt "deny" it, they just pretty much said I had been sick a long time, and it was "unlikely" lyme could cause symptoms for so long, but they didnt rule it out...I did hear "post lyme" or "auto immune syndrome caused from Lyme" a few times....but they were part right on that---my lyme did cause Guillian Barre Syndrome
Anyone else see these doctors?
Posted by elle108 (Member # 11730) on :
BTW...Dr. L.S. in Dr. Leonard Sigal...our PCP's office referred us to him, calling him a "Lyme Expert"...UH HUH!!
Posted by david1097 (Member # 3662) on :
RR....what ?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by elle108: BUT...she is seeing an LLMD because her experience with Dr. S was akin to spending an hour with a snake oil dealer.
Posted by Foggy (Member # 1584) on :
Went to Steere's nest at NEMC. TOTAL DISASTER! Was told I couldn't possibly have Lyme, and if I tested - on their proprietary test, I wouldn't be treated. Was ultimately told I had Fibro.
This caused great anguish & a year of chasing black holes and wasted time finding the proper diagnosis. With the help of a few kind non-LL PCPs, I found a LLMD and got treatment underway.
Here's some food for thought: My 4 "CDC + WB" came only after extensive treatment.
Posted by springshowers (Member # 19863) on :
Will you all add to this thread with your opinions stated so I can forward it to my family who things i should go to a IDSA doctor. ??
Posted by Tincup (Member # 5829) on :
"Topic: anyone here on lymenet ever been treated by Steere, Datwyller, Shapiro, Dumler, et al"
Why would you want to know this?
Posted by JamesNYC (Member # 15793) on :
For the eventual class-action law suit? Posted by Tincup (Member # 5829) on :
What a nice bedtime story though....
Sweet dreams James!
I'm gone.
Posted by Lymetoo (Member # 743) on :
Spring... Were you asking about Wormser in one of your posts??
I would not see that guy if I were dying and he was the only dr who could save me!!!
Posted by springshowers (Member # 19863) on :
Lymetoo yes..
It is my family who choose him and I am trying to gather up some posts and threads and articles to show them that is NOT a good idea.
just like the controversy though.. Someone can get swayed into a direction that is obvious to us is not good but to them they think it is.
They are quoting the doctor that I am wasting money on abx that are more then the two week treatment and just making my body toxic blah blah and no wonder I am not getting better.
They want to help me. So I hope to sway them and then they can help me with a doctor that really can help me..
First I have to convince them. Not as easy as one might think.
Posted by METALLlC BLUE (Member # 6628) on :
Wormser and Steere are the perfect example of using "some" facts to obscure truth.
It's unfortunate, deceptive, and in all honesty a mystery to me that people like that can even exist. I'd be naive to think the world was puppies carebears and unicorns, but some of the things I've seen make my skin crawl, and Dr. Wormser is one of them.
Posted by 22dreams (Member # 17846) on :
One of the patients featured in that piece from November last year on WCVB - Boston (Chronicle program) was an early patient of Steere's.
If you haven't viewed it, it's about 20 minutes long, I think.
look for the post about 7-31-09 IDSA hearing in wash. dc w/ilads drs, 2 lyme patients, researchers & idsa drs. including those you named above who TESTIFIED....
there are links in several posts about what they said vs. OUR ILADS, chronic llmds!!
the truth speaks for itself; i believe alot of it is in text to read also.
there is your evidence for your family!
Posted by Cold Feet (Member # 9882) on :
David, Tincup asked a good question:
"Why would you want to know this?"
It seems you already know the people who have denied treatment and sickened thousands.
Most in this community know that their poorly advised treatments are usually useless, and leaves Lyme patients chronically ill. This has been documented in many films, books, stories, articles, etc.
Please share more when you can, thanks...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Cold Feet:
It seems you already know the people who have denied treatment and sickened thousands.
Most in this community know that their poorly advised treatments are usually useless, and leaves Lyme patients chronically ill. This has been documented in many films, books, stories, articles, etc. [/QB]
This is what makes me angry with the WORM. He's evil for the above reasons.
To all .. this is an old post by David.
Posted by Hides1 (Member # 6348) on :
What I don't underrstand is how these docs can even practice medicine. If they gave me the run around and then I found out I had Lyme and not Fibromalgia and Chronic Fatigue Syndrome- I would raise a ruckus. There should be hundreds of patients complaining and sending letters to their state medical boards about these docs.
If poor wonderful Dr. J can be charged with something and have to spend thousands on defending himself when he does get hundreds of kids better the tables should be turned and these docs that don't beleive in more than 2 weeks of antibiotics should be held accountable. If anyone has seen these docs and not had a pleasant expereience and found their diagnosis wrong- they HAVE TO SPEAK UP. That's the only way the tables will turn.
Posted by Cold Feet (Member # 9882) on :
Hides, you are hopelessly logical -- too much for the Lymeworld!
Tincup, Lymetutu -- if this is a troller, there are many ways to keep this nonsense out. Pls have the admin contact me.
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