posted
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.
Posts: 2 | From New York | Registered: Mar 2006
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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 ]
-------------------- Lou B
Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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posted
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.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
^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.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
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!!
Posts: 5 | From Pittsburgh | Registered: Dec 2007
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bettyg
Unregistered
posted
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!
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posted
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.
Posts: 2 | From london,ky | Registered: Aug 2008
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bettyg
Unregistered
posted
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! ***************** ******************
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posted
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!!!!!!!!!!!!
-------------------- Eileen Posts: 34 | From Colorado | Registered: Feb 2009
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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.
Posts: 4 | From Boston MA | Registered: Jun 2009
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posted
Help. I'm new. Need adult Lyme doc in Metro Wash DC area.
-------------------- Muse Posts: 1 | From VA | Registered: Jun 2009
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bettyg
Unregistered
posted
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
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bettyg
Unregistered
posted
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
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