After going through months of tests for a possible autoimmune disorder (all either negative or inconclusive), I was tested for Lyme by a new doctor.
She said that although I didn't technically test positive, certain test results (as well as many of my symptoms) were "suggestive" of Lyme and/or its co-infections. She started me on a herbal treatment (MC-BB-1 from Beyond Balance) and suggested I consider ozone treatments.
I like this doctor very much and she seems to be much better informed about Lyme than the average doctor. And I feel weird about looking for another doctor when I'm not even sure that I have Lyme.
But I have been reading through some of the introductory material on this site (especially the resources that are posted for new visitors), and I'm seeing how important it is to have an experienced LLMD. I would be grateful for any suggestions. Thank you
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for CT.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by Dr. H, the top LLMD titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Thank you so much for all this information. I just ordered the books you suggested and am working hard to educate myself on next steps.
Although my doctor did not mention this, I just noticed that her online bio describes her as being a Lyme-literate practioner and a member of ILADS. (I originally began seeing her before the possibility of Lyme was even on my radar.)
If she is an LLMD, does that mean I can feel comfortable that I will receive appropriate treatment from her? Or are there big variations in the effectiveness of treatment even among LLMDs? (I just asked this same question in a private message, but thought I should maybe ask here as well.)
Posted by hopingandpraying (Member # 9256) on :
You're very welcome - glad to help.
As I wrote:
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Just because a doctor belongs to ILADS does not make him/her "Lyme-literate". They only refer doctors to people, but don't know anything about them. You need to get names from personal references and by checking the NY Lyme Support Groups I sent you.
Also, even if a doctor is close in proximity does not mean they are any good. That is not a criteria to choose one. At least half of all Lyme patients travel out-of-state for proper treatment.
Posted by Rumigirl (Member # 15091) on :
I strongly suggest going in person to the NYC Lyme Support Group & also the online NY Lyme Group and talking with people about your situation and the various doctors.
Choosing the right doctor is a very big, important decision. The majority of Lyme doctors treat with antibiotics, along with herbs, supplements, etc. You also need to be properly evaluated for all of the Tick-Borne Diseases, not just lyme.
Just from the skeletal information you wrote, it doesn't sound to me like this doctor has enough experience, or is as comprehensive as you likely need. However, it bears much more depth discussion with people who know the lay of the land and the various doctors strengths and weaknesses, taking your situation into account.
Posted by lymehope (Member # 48581) on :
Lillia I live in NYC but from personal experience and also from experience of other people on lymenet there are no really top notch LLMD doctors in NYC or NJ aside from Dr. H who is not taking any new patients. Please do not go to Dr. R. in NYC, he does not reply to emails or do any bloodworm while you are on high dose antibiotic. Very dangerous. If you are interested and can travel I can recommend my Dr. who has actually gotten many people well, I am very grateful to the person in lymenet that made the recommendation 7/8 months ago. It is the best decision and the best I have felt in two plus years since I got sick. Let me know if you would like details< I can send you a PM.