Good comments have already been made —just a few more thoughts:
Is your MD lyme literate? I highly recommend that you see a specialist who has significant experience treating lyme. While I am so sorry you are experiencing the health issues and frustration, I think your history is suspect and you are certainly going down the right path.
Regarding your doc: a slow and measured approach is very good—lyme treatment can be very intense when you start killing microbes and it can very easily and swiftly overwhelm a sick body. Think of it like chemo—as fast as you're killing the bad stuff you have to get it removed from the body so your detoxing has to be at maximum function. Many people get tested for DNA mutations to detect any detoxing problems with methylation so you might want to look into that. But back to your doc, when someone says their doc is unworried that you are so ill, I'd say go find someone who is…
You are awesome for maintaining such a healthy lifestyle and it is likely a main reason you have those sporadic "functional" days. And that will help your treatment—whatever plan you're on—significantly. So you have that going for you.
Also, I think you'll find many lyme specialists will pursue treatment without IGeneX tests but most insurance companies respect a standard protocol, which currently follows a two-tiered testing methodology (that we all here find problematic) but mandatory result is a "CDC-positive" lyme test (which is also problematic but is what it is). So that might be a helpful barometer for your testing, whether or not you need a positive result for insurance coverage. The antibiotic route is VERY expensive and often not covered without the positive tests.
Additionally, my LLMD and quite a few others, I understand, are no longer correlating low CD57 levels with a lyme diagnosis, but rather use it in concert with clinical diagnosis and other testing to support a diagnosis.
My LLMD first treated to get my viral load down, then treated to address some GI issues, and only when those two issues were more in control (because lyme treatment relies on a functioning immune system) did she start treatment for lyme, Bartonella and Babesia with herbs. I had some reaction but was at highest doses I could take for about
6 months and since I've likely gone untreated for over 15 yrs, she recommended IV antibiotics, which I just started and I will also continue taking the herbals. But you will find on this forum many different approaches and I'm sure others will chime in who, like Traveler, have had a lot of success with herbs.
Regarding the co-infections, some LLMDs will treat one or two simultaneously but it's uncommon to treat more than that—it's just too overwhelming to a sick body. I had a positive Bartonella test and a negative Babesia test, although Babesia symptoms are most dominant of all three. Once I get into the IV treatment a little more (titrating up slowly) then I'll start taking malarone for the Babesia. Won't start treating the Bartonella until one or both of these are under control - a ways out. My LLMD thinks I also likely have more co-infections but like you, I'm all tested out and she can't treat all of it right now so I'm not going to worry about
it all now.
I'm sorry—I can't speak to RA. But hope this is helpful.
Post Edited (Pirouette) : 11/5/2014 7:34:28 PM (GMT-7)