The Doc Was In!

Its been nearly a year that I've been trying to get an appointment with the one neurologist in my state, whom my insurance will cover and who knows how to work for a Lyme patient with auto-immune disorders. This delay was first due to an over-loaded practice. We had been calling since last March to get an appointment and had been repeatedly told that they couldn't even talk about booking an appointment for months to come.

Then, in September, I testified in front of the legislative committee considering laws to protect doctors who want to treat their patients with Lyme. I later learned that the neurologist had seen me there and instructed the staff to make room for me. Only, then the doctor went on medical leave for several months.

A tentative appointment was made for January and it was canceled at the last minute. So, today, I was anxious that the same thing would happen again. However, the doctor was in!

"How did it go?", you ask?

I can't say I'm optimistic. Though, that has nothing to do with the appointment. I started this medical odyssey in 2005 and its been a trail of frustration. At this point, I expect the system to work against me. That said, I liked the doctor a lot. We had to walk through the history again and the questions were very good. After some preliminary neurological testing, the doc confirmed that I showed signs of demyelination.

Of course, more testing must be done. All the testing must be re-done, because its been so long that now the tests from last winter must be done again. The insurance industry likes "fresh" tests. Through no fault of my own, I will have to be put through the ringer again. All in the hopes that this doc can navigate the system well enough to get the insurance company to cover my treatment. In talking to the doc and the staff, I do get the sense that they know what they're doing. So, I have some faith in that.

However, I'm concerned that having all the Lyme testing done again, along with new Lyme tests which I've not had before, will do the opposite of what we seek, which is to de-link the Lyme and the auto-immune disorders. If the insurance company sees that the doc is in any way linking the two, they will deny treatment. My hope had been to have the doc look strictly at the auto-immune stuff and only do testing regarding that, so that the diagnosis looks stand-alone. The doc's professional integrity won't allow for that, however, so the Lyme tests are being required.

I'm not looking forward to the testing, either. Some of it is benign, certainly. Tedious and wearing for me because being out in public is wearing, but no big deal. Other tests, however are unbearable. Particularly the EMG. The one where they zap you with electrical currents all over your body. I'm pretty sure this would be a painful test for someone who didn't have hyper-sensitive nerves. For someone who does, its easy to imagine that this was first used as a torture device and then somewhere along the way some doctor said, "hey, look what we can see with this!" I happen to be a little more wary of this test than some because my first go round was supposed to 30 minutes or so and it went for 3 hours. I was in tears and these docs are just looking at their monitors with curiosity and zapping me again. They hardly seem to notice that I was there.

Anyway, the upshot of today is that I will spend the next few weeks doing tests, tests, test. Urine, blood, MRI, brain scan, cognitive testing, EMG, blah, blah, blah. The hope - that thing I only have a vague sense of these days - is that we get enough objectively observable data which meet the insurance criterion for covering the IVIG treatment. Doesn't matter that the docs all say I need this treatment. Gotta find a way to get around the insurance game where they pay doctors, researchers, anybody, to give them any reason to justify denying your claim. No matter that what they're denying you is your life.

I see the doc again on March 17. Talk to me then.

In the interim, I'll write some posts soon about what's going on politically in the world of Lyme. The IDSA has been up to no good. More and more states are considering legislation to require insurance companies to cover what a patient's doctors' say she needs rather than allowing that to be dictated by these ethically compromised "guidelines". Plenty of interesting fodder to fill the space between now and then. Stay tuned.....