The LymeNet Terms & Conditions contain the following: You also agree not to post the last name, or the first name, of any person that treats Lyme disease. Instead, please use the first initial of the last name only, with the state, but not city. For example, Dr. G. in WV. This person's contact information should not be displayed on LymeNet. However, you may PM or email this information. This is to protect those that treat Lyme and the Lyme community.
A little reinforcement.
The following is part of a recent email exchange I had with Pat Smith, President of LDA:
"Lou, at the moment I know of a half dozen or more of docs under scrutiny. A few of the docs have websites and go out there, but most don't. The major websites do not post names. I do not use names when I speak about docs, we do not use them on materials in testimony and try to train patients not to use them.
I used to think people were a bit out there when they said websites were monitored. We know from certain legal cases that indeed, that has happened. People speak about treatment on the net. Not good to have someone say Dr XXXX gave me 1G XXXX drug 2x day. I actually have become more conservative as I have seen documents and heard political chatter all over and I think we keep docs and specifics of treatment as off the net as possible."
Got the message?
[ 02. November 2008, 12:13 AM: Message edited by: Lou B ]
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Excuse me, but...
Author Topic: Important Info re: Dr J - Update 2/25/2006 Lou B Administrator Member # 64
posted 05 February, 2006 11:36 AM -------------------------------------------------------------------------------- The following is from Ellen:
Dear folks, Dr. Charles Ray Jones, a Connecticut pediatrician who has been beloved by the Lyme disease community for saving thousands of children from the ravages of chronic Lyme disease, has been charged with professional misconduct by the Connecticut state medical disciplinary board.
The charges were not intiated from a complaint by any of his patients, but arose out of a complaint by a parent in a custody dispute.
*******
If the doctor has PUBLISHED lyme abstracts or other documents that can be verified, linked
OR
If he/she gives permission for their name to be posted.
I don't see a problem.
Why did you copy and post yourself a lyme doctor's name?
OOPS.
We all make mistakes. Leaders aren't supposed to ;-)
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
The exception proves the rule.
Dr. Jones is the ONLY doc I know of who has said, "Go ahead, use my name." We use his name on Lymenet. We used his name at the hearings in Boston.
And when I saw the large number of tributes to him there, and his words being (mis-)quoted in the news saying he was "head of the Lyme mafia," I couldn't help but think that he would be next on the medical board hit list.
I think that these ridiculous charges would've never been considered, nor his license threatened, if it weren't for people who are interested in putting him out of business.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Dr J's case/situation is an exception and Ellen Lubarsky has his OK to post his name ... I posted based on Ellen's request.
Got it?
Enough said?
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks for the reminder, Lou....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
nazi cdc
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
it may be that they can figure out the code, but they can't prove who we are talking about. I have seen published papers that quote people on sci.med, of all places! Some raving loonies! They are being quoted to discredit the Lyme patient community.
I agree with Pat Smith. I allow people to give dr names and contact info which is fairly public information anyway but not to discuss their treatments on the public forum. They can email backchannel.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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WildCondor
Unregistered
posted
Please move the seeking doctor questions and Doctor questions in general to "Seeking a Doctor"
posted
Is it OK to use dr.'s full names in private messages through lymenet?
-jennifer
Posts: 67 | From New York | Registered: Dec 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi Lou B,
Over in seeking a doctor I added city to the title because I have noticed quite a few people posting cities...
I did edit my post so it includes your paragraph about the lymenet rules. I dont think that most people enter into this thread to read they aren't supposed to post cities.
If you think its a good idea maybe you could add "or city" to your title.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I hate to sound paranoid, but there ARE people out there to be wary about!!! I have gotten a series of phone calls from one person who has tried repeatedly to get the name of _EVERY_ Lyme doc in the area. It is creepy!!!! Even creepier this person calls OTHER Lymed people in the area and GETS THOSE NAMES!!!!!!!!!!!!!!!!! AGH!!!!!!! Sincerely, Sarah in CA p.s. and I have answered Lyme calls for 8 years without a person that raises red flags like this!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Go to RateMDs.com, and find your doctor or add your doctor, and rate him or her.... Yes, real doctors being rated by patients.... Laczi
Posts: 121 | From Sarasota, FL | Registered: Oct 2000
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I agree so much with your post. I was recently diagnosed with Lyme. The neurologist I was seeing was thinking Lyme, Lupas, or MS. And even though they found Lyme antibodies in my blood, she diagnosed me with MS. So, I found a LLMD.
When the neurologist first mentioned the illnesses, I researched all three extensively. There was no doubt in my mind I had Neuro Lyme. But the thing that appalled me was our supposedly brilliant medical establishment ignoring the facts.
You would think that once researchers found that these antibodies had been found in patients that had been PREVIOUSLY diagnosed with ALS, MS, Alzheimers, Lupas, Autism, Rheumatoid arthritis, and (list of auto immune and psychiatric disorders goes on)...that there would have been an immense desire to see if the "Great Imitator" had actually been with us for generations. Imagine all of these horrible illnesses that might be treated, or dare we say, even cured with antibiotics. This would have to be LESS expensive than the treatments now being used.
The only negative I can think of is the massive financial dent made in the medical and pharmaceutical arena from people getting well. Everyone thinks I am crazy, I stopped caring. Do you know how rheumatoid arthritis is treated in Europe? Extensive antibiotic therapy. The Chinese herbalists believe the primary line of treatment for MS is boosting the immune system.
Sorry, this is so long. My first post but I have been reading the boards for months. They have actually guided me through my journey. And I do know not to mention dr. names.
Thanks to everyone who shares here.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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posted
Very well said. Especially about the A.I.D.s part. I have actually been saying the same thing for a while now, it's nice to see i'm nto the only one who sees this.
Our founding fathers are turning in their graves right now, and if they were alive would be sick to their stomachs to see how the country they founded has become exactly what they fought to free themselves from.
I met someone on Second Life, she works for the F.B.I. as a researcher for different serious diseases. I explained to her what I've been going through, and even she said the doctors I've seen are retarded. They have the information, but she's like, they're really slow and bad at getting it out.
Personally, I feel they don't want it to get out. This government is doing the same thing they did when AIDS first came out, and those that don't learn from the past are doomed to repeat it.
Theres a reason our medical system is so far down on the international list. Oddly enough, Doctors make the most money here. Would you pay a mechanic obsorbant ammounts of money if he wasn't fixing your car and the one down the street can fix it, and it'll cost you next to nothing? Unfortunately, our medical system is based on the almighty dollar and not the patient.
It's more cost effective to let people who want to work, just end up on disablility or worse die, then actually find a cure. We as a community need to make a stand.
I mean come on, anti smokers have been able to make huge changes in the past ten years, how much more can we accomplish with something that is far more definitive at being a disabling disease?
-------------------- C.D.C = "Country Doesn't Care" Ticks are like Snipers, you don't know they're there, until you see the bullseye. Posts: 86 | From Upstate New York | Registered: Jun 2007
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posted
I know we need to protect each other, but far mor important, we need to advocate for each other and this horrific disease. Please band together..and come OUT OF YOUR CLOSET!!!!!!!!!!!!!
-------------------- Eileen Posts: 34 | From Colorado | Registered: Feb 2009
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