Finding the right doctor to treat your Lyme Disease is a serious problem and question.
The short answer is that you need a Lyme literate Doctor.
What is that? That's a doctor that understands Lyme Disease and knows how to treat it.
It makes perfect sense when you think about it, but if you've never heard of a Lyme literate doctor how would you know you need one? We live in a society where we think Doctors know everything. Of course, we know there are specialists for really specific things, but we sort of think that our normal doctor can diagnose us and send us to a specialist. Or at least know when to send us to a specialist.
Lyme gets a little bit more complex. Lyme literate doctors are sort of specialists in Lyme. But they aren't viewed or described that way. Your normal doctor may completely overlook your symptoms or be unable to diagnose you with Lyme. Some doctors don't believe in "post-treatment Lyme disease" or "chronic Lyme disease".
You essentially have to be your own advocate. If you're not better and the treatment isn't working you have to be vocal, tell the doctor, find a new one when your doctor or treatment isn't working. It's all a lot of hard work, but you have to be a firm advocate for yourself or you won't get better.
But it can all be very overwhelming where do you start?
I don't have all the answers, and I won't pretend I do. But I was struggling to find Lyme literate doctors in my area. I looked on different websites, I searched for all kinds of doctors. I didn't like the way most of the doctors I found sounded, that is, the philosophies they believed in.
So I kept looking. My previous doctor is just not an expert in Lyme. He's a great doctor and I'm grateful that he thought to test for it and we diagnosed it before years of misery passed. But we hit the limitation of his knowledge on how to treat Lyme. He started to say things like "well, maybe you don't have Lyme and I think you need to see a specialist in arthritis." That wasn't the answer I needed, I needed someone to treat the Lyme disease I have, or to help figure out if I have a co-infection that came with Lyme that I need to treat. So I kept looking.
Email ILADS (the International Lyme and Associated Diseases Society)
One option is to email ILADS (the International Lyme and Associated Diseases Society) for a list of Lyme literate doctors in your area. I emailed them at the following email address:
contact@ilads.org
I made the mistake of only asking for Lyme literate doctors in San Diego. I should have asked for a list of a broader area or several different areas. But it was a starting place.
They also sent the following information:
Then it's a question of essentially interviewing the doctors. Call all of them, ask if they treat Lyme and all related diseases, ask if they treat until the symptoms are gone and anything else you've had trouble with before. Ask them if they treat symptoms regardless of whether you get positive test results back. (Not that testing isn't a wonderful tool, but Lyme Disease and its common co-infections are notoriously difficult to test for and you need someone to work with your symptoms, not rely solely on tests.) If they don't believe in post treatment Lyme and that's what you're dealing with, don't go to them. Keep asking questions until you find one that's willing to work with you, to keep digging, and more importantly to keep treating you until the symptoms are gone!
Lists of Lyme Literate Doctors
LymeDisease.org has a list of Lyme Literate Physicians. There are a few other sites that I know of that have lists. I haven't tried looking at other lists but I know this website has a list. You do have to sign up for an account to get the list. But you can create a FREE account that will give you access to the list of Lyme Literate Doctors (or LLD).
I found Dr. #3, who I have high hopes for on this list. I also found the people recommended by ILADS on this list. The particular doctors recommended to me by ILADS weren't accepting new patients when I tried calling. But Dr. #3 was on this list and seems to be wonderful. So this is an option if you get stuck and overwhelmed. At least it's a list to give you a place to start.
It's your health and it's your life. Don't settle. Keep looking until you find the right one.
Keep fighting.
For Other Posts about Lyme Disease see the following:
Lyme Disease a List of Symptoms
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