My doctor appt and his warning about getting insurance to pay for Lyme treatment.

Warning: I got long and windy so you might want to skip to the paragraph that starts "So essentially".

Yesterday, I had my first appointment with my Rheumatologist, who has treated me for Fibromyalgia for more than 10 years, since I got the Lyme results.

So the history is we had a running battle for two months (lots of electronic messaging back and forth) about the possibility of me having Lyme. He said there was nothing in my record to suggest Lyme and I said everything in my record suggested Lyme. He also said the literature he was reading didn't support my position. I actually raised my voice and said that the literature I was reading did. He then said there isn't enough time in the day to keep up with the Rheumatology lit and he wasn't going to add more. Eventually, I wore him down and he sign off on the Igenex order form.

Sounds terrible, but I really love him as a doc and he has always supported me when I come up with other ideas for treatment. Didn't always agree but that's ok.

So the results came back positive for the IgM and the nurse said he had no idea how to interpret the results. So I said, I knew people who did and at our next visit I would show him the info. She mentioned that he said i would be seeing an ID doc and I said no but I would explain it when I saw him.

When he signed the order, he said if it came back positive I would have to find someone to treat (it was my responsibility) me because it wasn't in his bailiwick.

So I got to the appt armed with a copy of Advanced Topics in Lyme disease, my results with the interpretation and annotations of which bands are Bb specific.

He came in and asked if I wanted to go first. I said yep and he said I had 30 minutes. I explained the tests and the results. He asked if I had found a doc and I do have an appt with a doc that is local who has treated others on the forum, but I didn't know what her course of treatment was. I have the appointment and will show with all my records including labs done for just about everything (my doc is thorough) then we'll come up with a treatment plan. If I don't like the plan I may go the herbal route and have a plan for that.

He asked if it was an ID doc and I said no because any ID doc would laugh me out of the state. I live in NC and the Medical Board drove Dr Jemsek out of the state. Duke University has a researcher that writes lots of Lyme Denier articles and no ID would dare treat Lyme. He then said that it didn't really matter what type of doc it is as long as they were willing to treat Lyme and were honest.

I then said that I still met the diagnosis of Fibromyalgia and other than the Igenex tests there is nothing else in my record that says Lyme. (He won't put that info in his notes). I couldn't just go off my meds because I had a test for Lyme that is positive. If I don't push for them to pay for Lyme testing or treatment, they shouldn't stop paying for Fibro treatment.

My doc said that the insurance company would say that they would treat Fibro unless there was something else that explained my symptoms. Since they don't cover Lyme treatment they could stop paying for my fibro treatment.

That's why nothing in my record except the test results mentions Lyme. I'm not going to give them any reason to discontinue the meds I need to function. As I make progress with Lyme & Co, I will cut back on my Fibro meds.

So essentially, I'll be paying out of pocket. I'm not going to even attempt to get them to pay on Lyme. If I do they will argue both sides and not pay for anything.

It's a catch-22. We each have to decide what is best for ourselves. Personally, I have been too sick for too long and my quality of life sucks. We'll pay a lot, but if I get better it will be worth it.

I know that for some people treatment may not be possible without insurance. I just want to warn everyone that insurance companies are snakes and will play both sides. Pushing them to pay may backfire.

The good news is that my doc who doesn't have time to read all the new literature took the copy of Advanced Topics in Lyme and said thank you. He also said that I had done a lot of research and that was good, but I had lots more to do. LOL. I love my doc but he can be cranky so that was all a huge compliment.

He treats lots of people for Fibromyalgia and I expect lots of questions from him about the treatment and my progress. I also expect that he will start asking if people have ever had a tick bite or a Lyme test and when did their symptoms start and where were they living etc.

Thanks for listening,
Kim

It definitely is a two edge sword. Using insurance to pay for LLMD's at this point in time, bring attention - often unwanted attention - to our doctors. We are loosing more and more doctors because they are being turned in for treating Lyme but not following the IDSA treatment standards.

Yet there are so many that can only barely afford a LLMD if they take insurance! This is the best proof that we really need to all be signing petitions, calling/writing our elected officials to do more for tick-borne infection recognition, and anything else that we can come up with.

And I agree with Sebreg - It's really cool that your doc listens and has a real dialogue with you about this. I'm lucky enough to have had that with my last 2 doctors - the one that helped me heal from these infections, and the one I use now for my adrenals & thyroid issues.