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. For example, Dr. B. in NY.
This person's contact information should not be displayed on LymeNet.
However, you may email this information. This is to protect those that treat Lyme and the Lyme community.
There is alot of political turmiol around lyme and its treatment....
They are trying to take away the medical license of dr.s who treat alot of lyme...
especially long term treatment for chronic lyme...
So to keep our precious llmds safe please either send a private message to the person or an email.
Best wishes
[ 25. December 2006, 06:29 PM: Message edited by: AZURE WISH ]
Posted by Lymetoo (Member # 743) on :
It's actually against Lymenet rules to post ANY dr's name, permission or no.
Thanks for the heads up, Azure! Posted by nkuzmik (Member # 8987) on :
Can this thread by "stickied" so that it will stay at the top of the list? This is a very useful bie of information that should be mentioned often.
Posted by Lymetoo (Member # 743) on :
Good idea. They used to have it posted in RED at the top, but no one ever READ it!! Posted by Lou B (Member # 64) on :
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?
I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit.
Current HIPPA laws prohibit the doctor from discussing your care with anyone but you without your written permission. I suggest you respect the doctor - patient relationship by discussing any issues or concerns directly with the doctor and not posting them on an Internet BB.
Thanks and take care,
[ 10-08-2009, 01:27 PM: Message edited by: Lou B ]
Posted by Lymetoo (Member # 743) on :
Wow! That's powerful! and scary!
Posted by jaykay (Member # 8448) on :
Is it OK to use the LLMD's full names in private messages?
-jennifer
Posted by Colleenie331 (Member # 2198) on :
Sorry about that....I've edited the message.....this is a total lyme brain week....thanks for the reminder.....I really needed it! [LIST]
Posted by Catsmeow (Member # 9485) on :
I don't wish to appear lame but why are doctors being persecuted for fulfilling a serious medical need (patients with Lyme disease)?
I really don't understand this.
Posted by bettyg (Member # 6147) on :
please do NOT post their entire mailing address, phone/fax/web site or email address .
you can show the city/state .... that's all plus their LAST INITIAL ONLY. thanks gang! Posted by Joe-the-Tick (Member # 12328) on :
It seems like we are losing the Lyme fight if we can't provide names of LLMD doctors to patients searching for them. I know these actions have kept me from finding doctors. Four years and I am still searching.
Are we allowed to at least post the names of the doctors who don't believe in Chronic-Lyme. This will at least help patients by informing which doctors to avoid.
Posted by trueblue (Member # 7348) on :
^up^ A whole lot of names being used lately as opposed to initials.
Joe, Doctors' names and contact information can be exchanged privately by PM or email. I'm sorry it's so difficult to find someone willing to treat. I understand. I hope you have found, or can find, some help soon.
Posted by kitkat61 (Member # 14198) on :
Anyone know of Lyme LITERATE dr in Pittsburgh area? I've moved back here from Florida (where I picked up Lyme, Bab & Erlich altho according to the so-called specialists I saw, you supposedly can't get Lyme in Florida ha ha). Please email to [email protected]. Thank you!!
Posted by bettyg (Member # 6147) on :
also to new posters, this is the info we need from you in order to help you find a LLMD, lyme literate MD: ******************************
is this for YOURSELF or a CHILD, WHAT AGE, since some llmds will NOT treat kids and UNDER certain ages.
have you had the western blot igm and igg blood test drawn and sent to igenex lab in calif?
did you see a tick? was it embedded? did you have a bulls-eye rash?
what are your symptoms?
thank you for putting all this info in your post for seeking a dr. for your state.
show the LARGEST CITY near you/YOUR STATE NAME in subject line!
in body text show 4-6 LARGEST CITY NAMES CLOSEST to you being named first; this will help us help you.
lists are by city, NOT COUNTIES! thanks for help us, HELP YOU!
Posted by camping_ham (Member # 17062) on :
I am in Kentucky. I have been to the Mayo for the symptoms we all are aware of. I was told my body could not process steroids and I had suffered damage. This after I had explained I had come for lyme treatment. Needless to say, I am looking for help here or close by in Tenn. or Indiana. Please point me in the right direction.
Posted by bettyg (Member # 6147) on :
camping ham....
sending them TENN info since kentucky has NONE! *************************************************
TO ALL NEW MEMBERS,
please start a NEW POST FOUND IN SMALL BLACK/WHITE BOXES AT TOP/BOTTOM OF PAGE! ****************************************
do NOT POST HERE! thanks! ***************** ******************
Posted by Barby (Member # 18348) on :
It is soooo insane that it has to be so secretive. I completely understand why, but wow! I wish things were different.
Posted by dogshowdisaster (Member # 19168) on :
HUH?? What?? Perhaps we should all just 'Come out of the closet" and fight this. Are you kidding me? I came on to this site for help. This DISEASE DOES EXIST!! OMG, I am so sick. What is with all of the secretism?????????? I need help from all of you. PLEASE..refer me to a LLMD!!!!!!!!!!!!
Posted by MTC (Member # 20619) on :
quote:Originally posted by dogshowdisaster: HUH?? What?? Perhaps we should all just 'Come out of the closet" and fight this. Are you kidding me? I came on to this site for help. This DISEASE DOES EXIST!! OMG, I am so sick. What is with all of the secretism?????????? I need help from all of you. PLEASE..refer me to a LLMD!!!!!!!!!!!!
I AGREE whole-heartedly - this is in a word - SAD. We just need some help not rules and regs - this is a disease - last I checked - this isn;t some wierd fettish site - this is a discussion on how to get help witha disease. I've been less frustrated at the registry of motor vehicles.
Posted by Muse (Member # 20724) on :
Help. I'm new. Need adult Lyme doc in Metro Wash DC area.
Posted by bettyg (Member # 6147) on :
sent note to muse ..... DONE!
TO NEW PATIENTS ...
PLEASE START YOUR "OWN" POST PLEASE!
look for the small black/white box at top/bottom says NEW POST
subject: show largest city closest to you, your STATE llmd needed
if you need KIDS dr....show KIDS LLMD in ..show YOUR STATE NAME. only 15 nationwide!!!
please tell us about yourself please ...
have you been CLINICALLY diagnosed with lyme and/or co-infections ... name them please; thanks
if it's for a child...WE NEED KIDS AGE; some have age restrictions and we can serve you quicker if we know this to begin with
go to lower left hand corner and mark box to receive all replies; send!
please see my guidelines below for posting please; you'll receive my help if you follow this since i've had chronic lyme for 39.5 yrs!! very severe neuro patient Posted by bettyg (Member # 6147) on :
I emailed lou b asking him to CLOSE this since we're getting so many requests for llmds VS. their starting their OWN post. fyi only. betty
Posted by Lou B (Member # 64) on :
Topic closed.
If you're Seeking a Doctor, do a "Post New Topic" and include your request and information.
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I don't wish to appear lame but why are doctors being persecuted for fulfilling a serious medical need (patients with Lyme disease)?![[group hug]](graemlins/grouphug.gif)
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