March, 2012

How To Find a Doctor

Lyme disease and other invisible illnesses come with a unique set of challenges that most other diseases don't. There are rarely any obvious visual signs of these conditions, and the ones that are noticeable can often be attributed to lack of sleep or stress. This makes it problematic when patients are trying to convince their friends and family of the true scope of their symptoms. It becomes a very frustrating and lonely struggle.

As a culture, we put a huge amount of faith in medical professionals. They are the ones we turn to when things go wrong. When our bodies malfunction, they are the ones we turn to for answers. They are the modern-day shamans, the healers of our community. So, when no one will believe us about the pain we are in, our doctor is the one we look to.

Unfortunately, the definition of Lyme, as written by the Infectious Disease Society of America (IDSA), trivializes and brutally oversimplifies the disease. The treatment they recommend is dangerously insufficient. This is the literature that is used to teach those in the medical field, and few will realize the need for further research. After all, the CDC only requires certain cases to be reported.

Patients desperately turn to their doctors seeking some kind of proof, or at least acknowledgement, of our agony. Because of the fundamental misunderstanding of Lyme in the medical community, this typically proves to be a much greater challenge than originally anticipated.

There are several ways that invisible illness patients will respond to this particularly harsh brand of disappointment, if they haven't been lucky enough to figure it out on their own. The first is to slip into a state of depression and self-questioning. They'll wonder if maybe they're just crazy, and if there isn't anything physically wrong with them. Or they'll become frustrated with the system, and swear off doctors altogether out of spite. Neither of these are healthy options.

When Lyme is left untreated, it can cause devastating, permanent damage to the body, and even become fatal. Even though it is possible to treat naturally, without standard pharmaceuticals, treatment is still a very involved and complicated process. Unless the afflicted individual has some kind of medical training and is unaffected by debilitating neurological symptoms, it can be nearly impossible to self-treat. It becomes absolutely necessary to find a properly-educated ally.


I can't keep track of all of these by myself! I have bugs in my brain!

With most obscure health conditions, once you figure out what you have, it's a simple matter of searching online for a specialist. With Lyme, this isn't so easy. The results that come up are primarily doctors who have had their licenses revoked or have been otherwise harshly disciplined by their local medical boards.

Because Lyme is not officially recognized to exist in its chronic state and the majority of doctors don't understand the need for such extensive treatment, the doctors that do give patients the help that they need are slapped with ferocious malpractice suits. ILADS doctors (the ones who actually understand Lyme) are forced to operate under the radar and are left unable to advertise these services to those in need.

If you suspect or have just discovered you have Lyme, finding this out can make you feel utterly hopeless. What can you do? How can you find a doctor if all the good, ILADS doctors are in hiding? When you have Lyme, your number one resource is the Lyme community. If you know someone else who has it, ask them about their doctor and go from there.

What if you don't know anyone who has Lyme? If you choose to come out about your condition, you'll be surprised at how many people will confess the same to you. If you don't know who they are, there are still places you can turn. The Lyme community has a massive online presence. Find a forum or discussion board. I've posted a few links to ones I like.

These groups will typically compile a list of doctors that members have seen and recommend. Group leaders keep track of the list, and if you'll just answer a few questions for them, then they'll give you the information you need. The more extensive lists will even let you know which doctors take which kinds of insurance.

Don't lose hope. There are professionals out there who can and will help you. Sometimes finding them can feel like looking for a needle in a haystack, but let's just say I've got a few friends with metal detectors.

©2012-2013 Lemon&Lyme
Questions or Comments? Email Ginger at ginger.lemonlyme@gmail.com