Living with Lyme Disease (LD Post #6)

So here we are at the beginning of 2008. I had just moved back to Florida and started dating Daniel. It had been a long, long time since I had dated anyone. 


I was still taking a lot of pills. The amount varied, depending what I was on at the time. But between all the prescriptions and the nutritional supplements, I took something like 15-30 pills a day. Thankfully, I don't have a problem with taking pills. But I have definitely grown to not liking it. Maybe because it's a reminder that I need them?


I was still dealing with a lot of fatigue and weakness. I had always been a very active and strong (working in the greenhouses forces that one on you) and my body lost a lot of strength during my years of illness. It had a lot of damage to recover from. 


I was going back to see my doctor in NJ every 3-4 months, and she continued to monitor my progress and switch up my medicines a bit. I think the last time I saw her was in the spring of 2009. I had kind of plateaued in my treatment. I was still taking pills and spending lots of money (especially if you consider the costs of traveling to NJ from FL) but not seeing much more noticeable improvement. 

I stopped taking most of my medicine. I was also tired of taking antibiotics. I think by this point I had been on them for 1 1/2 years. Lyme disease isn't good for your body, but neither are a lot of antibiotics! I didn't notice a big change in how I was feeling when I stopped taking everything. 


And then I got sick. It was probably in November of 2009 and I had a bad cold. More often than not, colds for me turn into sinus infections and I have to go on antibiotics for them. I had yet to find a GP here in Florida that I liked, so I went to a walk-in clinic. This was also when the swine flu was going around, and I wanted to make sure I didn't have that, being the immunocompromised individual that I am.


Thankfully, no swine flu. But they put me on antibiotics and prednisone (a steroid), which if you remember from a previous post, it's a bad thing for people with Lyme disease. But I didn't know that at the time. It's how I found out. Almost overnight, my joint pain returned along with some other symptoms. I stopped taking the prednisone after a little bit of research and started looking for a Lyme-literate doctor here in Florida, because I was afraid I had just given the Lyme disease a foothold.


I don't remember how I found my current doctor  - it might have been on from some people I talked to online who had Lyme disease. And if you click on this link, you can read a little bit about why it's hard to find a good Lyme doctor. 


I met with my new doctor and we spent a lot of time going over my complicated history (seems to be the mark of a good doctor - they spend time listening to you before making snap judgments). As for the money side of things, he was another doctor that did not take insurance. So we just focused on the important tests to save some money. Why did I have to get a politically incorrect disease?


So we ran the essential tests to figure out what was going on with my health. And we found out some interesting things!