I alluded to the process of finding a doctor who can treat your Lyme in my post “so you think you have lyme disease”, but I think that it’s worth expanding the discussion.
I realize that everyone must go through their own process of coming to terms with their disease, and even being ready for treatment. By the time I was diagnosed, I had been sick long enough to be desperate to get started. I, like many others before you, have had the experience of being turned away by doctors or finding doctors who want to help but who ultimately don’t have the expertise. I tried six doctors before ultimately deciding that it was worth it to find (and pay out-of-pocket for) a Lyme Specialist.
Now, what is a Lyme Specialist? A Lyme Specialist is a doctor who treats Lyme Disease and other co-infections. They treat these diseases almost exclusively and have dedicated their lives to finding treatments that work. As I said before, there is no known cure for Chronic Lyme Disease (Lyme Disease that has disseminated in your body for more than 4-6 weeks), therefore all treatment is considered experimental. Though it is “experimental”, Lyme Specialists are on the cutting edge of research and have the best chances of helping you.
Now, be prepared that because insurance companies sanction doctors who do experimental Lyme treatment, your doctor’s appointments will most likely not be covered by insurance and you will have to pay out-of-pocket. That’s intimidating, I know. It is the only reason that I waited so long to go to one. But please… May I save you a big headache and suggest you skip right to a Lyme Specialist? Here’s why:
- A Lyme Specialist will take you seriously. With each of the doctors I tried before my Lyme doctor, I always felt like I had to convince them, “No, really… I’m sick. I promise.” Frankly, many doctors aren’t up on the current research and discussions about Lyme Disease. Many think it’s a fad to be sick with Lyme, so you end up spending the appointment trying to convince them that you need help. This is not the doctor for you.
- A Lyme Specialist will actually know what to do with you. It’s sad, but there is a lot of misinformation about Lyme Disease, and I’ve met many doctors who are unaware that Lyme is in their area, as well as misinformed about basic diagnosis and treatment. There are so many diseases out there, and doctors are trying to do the best with what they know… but they can’t know everything. That is why we need to rely upon the people who really know the disease that you have. You wouldn’t go to your family doctor for your cancer treatment. You’d go to an oncologist. If you have Lyme Disease, you’ll be in the best hands with a Lyme Specialist. They’ll know the tests to run, and they’ll have an actual treatment plan. These doctors have successfully helped many of their patients regain their livelihood.
- A Lyme Specialist will say “yes” to treating you. What do I mean by that? As I’ve said before, since there is no cure for Chronic Lyme Disease, all treatment is considered “experimental”. That means that insurance companies will sanction doctors who treat it. So, even if you can find a beloved family doctor or infectious disease specialist who wants to help you (and that your insurance plan covers), they probably can’t without getting in trouble. They will want to help, but most likely can’t without jeopardizing the rest of their medical practice. A Lyme Specialist, however, has willingly alienated themselves from the medical and insurance community to treat people like you. So, you can be assured that when you call them, they will treat you… because they’ve devoted their whole practice to this.
- There’s no time to waste. The longer Lyme Disease (and those nasty co-infections) runs rampant in your body, the harder it is to treat. It took me six months and six failed experiences with doctors to come to the conclusion that I would go to a non-insurance covered specialist. I wish I had sooner!
- It’s costly, but your life is worth it. Going to a Lyme specialist and trying experimental treatment is scary… mostly because of the financial aspects (at least to me!). However, it’s an investment in your future. It’s an investment in your family. It’s the most important investment of your life—for you and for the people around you. It’s worth it for your sake and for your family’s sake to have your life back. It’s not selfish to spend money to get better. It’s a wise choice.
You may have guessed it already — Lyme Specialists are often seen as pariahs in the medical community. They are either celebrated wholeheartedly or banished. For that reason, many Lyme doctors do not have a strong internet presence, and it is hard to find them. The International Lyme and Associated Diseases Society (ILADS) is a reputable organization, and they can help you find a physician in your area. Go to this page for a physician referral.
Next, I’ll be posting about how to get the most out of your doctor’s appointment. Please comment below with any questions or helpful tips for other Lymies.