I've been searching for doctors to treat my lymes, but unfortunately, all of the doctors I have been told about are not covered by my insurance. I did, however, get a list of infectious disease doctors in my area that I can see. I was wondering if infectious disease doctors are as helpful, or if I may end up getting one who doesn't believe in the Lymes? Also, is there anyone who could possibly PM me and let me know if there are any good ones out of the names I was given? I am in Pennsylvania... thank you everyone
Posted by Keebler (Member # 12673) on :
- Q: Are infectious disease doctors as helpful?
Only one in a million. There is one poster here who has a good lyme literate MD who is an Infectious Disease doctor and also a member of ILADS.
However, that is extremely rare.
You could call the ID doctors' offices and
� ask the office manager if they are a member of ILADS (a good thing)
� Ask if they treat chronic lyme. (Listen very closely. You can tell a lot by the sounds and tone that come out of the office manger's mouth. If you "hear" exasperation even in silence of sorts, that's a bad sign.)
� Ask if they also evaluate and treat other tick- borne infections
� Ask if they follow the IDSA guidelines for diagnosis and treatment. If so, that is not a good thing. Do not proceed.
� Find articles that the doctor may have written or co-authored. Start with a search of their last name at PubMed ( http://www.ncbi.nlm.nih.gov/sites/entrez ) then try google.
� Also ask the office manager if the doctor can suggest a good article for lyme patients so they you how to best manage your nutrition and other things you can do to help progress.
By now, you will probably have lost the office manger if the doctor is not a good choice.
You need an ILADS-educated LLMD (or one who is an ILADS member) , even if they vary in some ways, they will have the necessary background from the ILADS research and conference opportunities.
You might ask you local support group for suggestions - ask specifically about the ID doctors' names on your list. Once in a while, there can be a good one. And I hope there will be more to come someday.
But you have to do your homework first. Just don't go as that is usually a waste of time, they get money for a lousy job -- and it takes a huge chuck out of your soul.
The only infectious disease doc I know that is any good is from MA----Dr. D.
I seen him myself and I highly recommend him.
I totally agree with KEEBLER - There are only one in a million!!!!!!!!!!!!
Steve
**edited out the city**
[ 10-27-2010, 10:32 PM: Message edited by: Lymetoo ]
Posted by rerae (Member # 28438) on :
If only I lived with my grandfather up in Boston... lol As for the support group, I have tried contacting 2 nearest my area, and the emails are not working for either. Should I branch out to a little farther away?
Posted by Keebler (Member # 12673) on :
- Well, can you go visit your grandfather? That might be a wonderful way to make this work.
I would branch out. I'd think of where ever you may have family or friends with a spare bed and a good heart.
I added some thoughts to the post above. You may want to take another peek. -
Posted by onbam (Member # 23758) on :
will send my (woefully incomplete) newby message
Posted by seekhelp (Member # 15067) on :
There's a Dr. S in FL who is part of the IDSA that is said to to be the bees knees! Not all are bad.
Posted by steve1906 (Member # 16206) on :
Hey rerae, Lyme doctors
Check out this the it's labled under Lyme Disease and it in---Erie, PA
Steve
Posted by METALLlC BLUE (Member # 6628) on :
I agree with Steve, Dr. D is a great guy and great at diagnosing Lyme Disease. However, one important shortcoming is to remember that he does not treat co-infections. He believes based on his experience that if a patient has a typical co-infections like Rocky Mountain Spotted fever, or Ehrlichiosis, that the antibiotics used for the Lyme Disease will also kill these infections.
Unfortunately, Babesia is seen commonly and the antibiotics used do not seem to kill all the strains of these other co-infections. Many patients get well, but many go on to report still being co-infected. So, it's something to be aware of. If treatment is working, stay the course I say, but if you're just stuck and still sick as a dog, dig deeper.
Posted by Lymetoo (Member # 743) on :
Find a doctor who will treat Lyme AND coinfections... and will treat long term.
That is usually going to be an LLMD, not an ID.
Posted by LSG Scott (Member # 21624) on :
dr J from under our skin the one who treated mandy is an infectious disease Doctor and some say the best lyme doc in the US
so i would say more like 3 or 4 in a million
Posted by BackinStOlaf (Member # 23725) on :
The few I've met told me I don't have lyme anymore and 2 weeks of antibiotics is enough. I said 'then why do I still have symptoms' and they said 'well maybe you never had lyme'
Funny, because I had a highly positive test. *sigh*
Posted by cjfrank (Member # 26985) on :
I pretty much had the same experience as BackinStOlaf. I was told that I didn't have lyme anymore either.
The infectious disease doctor lectured me, looked at my knees like he couldn't see the swollen tissue and asked me if I was depressed.
I told him, of course, I'm depressed, I feel horrible, I can hardly walk, I have all I can do to get out of bed each morning, etc etc.
I left his office feeling worse than I had before I had entered.
It was a waste of time, energy, and money.
Posted by randibear (Member # 11290) on :
i wasted probably a year and the last appt she told me "i never believed you anyway".
Oh great!!!
Posted by 'Kete-tracker (Member # 17189) on :
You Should be able to get a response from the folks at LymePa.org Not sure what part of PA you're in but that organization is based out of Chadds Ford. I'm sure there are support groups that meet throughout the State.
Contrary to what might seem logical, I.D. docs usually don't "get" the complexities of Lyme infection and rarely know how to properly Dx co-infections that are all too common in areas like yours.
Find an M.D. or D.O. experienced in treating Lyme who follows ILADS methods. Preferably one you've gotten good feedback on from folks who are doing well again.
Posted by jac123 (Member # 28247) on :
I live in 2 states although my LLMD is in Wisc.I thought to have a DR. here for help when ill.3 weeks in treatment went to see her,not only is she non believer (in Lymes) even with positive test results in front of her,she said rash on my face was a bite.What a mistake,its shingles,total waiste of my time and money.Besides the fact I was so sick and dragged my self to her.As if I needed that!
Posted by littlebit27 (Member # 24477) on :
Only a LLMD with properly treat you and believe you. I had an internal medicine doctor, a allergist (supposedly a LLMD, but wasn't) and an ID doc all tell me I was crazy.
It's in my head and I have "post-lyme syndrome"
Now I've found a wonderfull LLMD who is treating me.
But I do know there is an ID doc in GA who is supposedly very good. My experience with them was horrible but other reviews say they are great. So there are some, but few and far between.
![[Smile]](smile.gif)
Not all are bad.