Lyme literate doctor in Norhtern Virginia

[Orene]

I've had Lyme for 3 years and went to a specialist for 2 1/2 years.  She cured the Rocky Mountain Spotted Fever and the Bell's Palsy but cannot seem to get hold of the Lyme, which she says is chronic.  I need to find another doctor, perhaps an infectious disease doctor, who has had success in treating this disease.  

I am now on two antibiotics which the doctor said I will be on for the rest of my life.  That doesn't sound like a good solution to me.  I do believe a second opinion is important.  

I would appreciate any help you can offer.

[wonko]

I also sent a message through MedHelp.  Good luck!

[JackieCalifornia]

Welcome to MedHelp.  I would do what you are doing -- finding a new doc for a second look.  

We don't post LLMD names in the open here because of possible harrassment by local and state medical boards, but someone here might send you a private message with suggestions ... or check these websites, which have or used to have referral functions:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

You can also google/search for something like "LLMD Virginia" or "LLMD Maryland" and see what you get.  There are other, more local groups like the ones listed above who may have suggestions for LLMDs in your area.

Also, ilads [dot] org is the main website for LLMDs and has good information about Lyme and especially its treatment.  Not sure they have a referral function currently.

You mention looking for perhaps an infectious disease (ID) doctor ... While LLMDs can be any kind of doc (from a GP or internist to all manner of specialists including ID docs), the ID docs are too often the ones who deny that Lyme persists after a few weeks of antibiotics.  The original 'discoverers' of Lyme disease were ID docs who are still in practice and are big in the professional association of ID docs, the Infectious Disease Society of America (IDSA).  Their initial conclusions about Lyme are still the 'official' guide for diagnosis and treatment several decades later -- that being that Lyme is hard to get and easy to cure.

While you may luck out and find a broadminded ID doc, I would not make an ID specialty my primary criterion for which doc I choose to see ... and in fact I might be more suspicious of an ID doc.  I actually saw one for a second opinion, and he wanted nothing to do with me when I told him I had been treated by an LLMD -- ID docs seem to view LLMDs as quacks and don't want to be tangled up with the LLMD's patients in any way at all.  (I had just been bitten by a new tick and hauled it with me to the appointment with the ID doc ... he reviewed my test results and history notes from my LLMD treatment, peered at the tick, pronounced it 'Rather buggy' and told me to go home and leave him a message in a month or so to tell him I was fine.  Warms the heart, doesn't it.  Well, I wasn't fine, and in fact had something akin to your RMSF from this new tick.)

I am sure there are ID docs with broader minds than the guy I saw, but he was just parroting the position of the IDSA.  

Let us know if you need more help finding someone ... there are others here who might have more specific data for you.  Best wishes, and let us know how you do!