Confirmed!

So, even though Ive been doing a lot of research lately, I've really dived head in since I've found a doctor that's finally labeled me. Funny how we try to not be "labeled" most the time, I am finding comfort in it. Being labelled- labeled? sp?- means I am not crazy! For so long I thought everything was in my head, or that I had worked out to hard, or was just being lazy (well, sometimes those are true, lol) but it's such a DEEP ache when I am flaring. Nothing like an overworked muscle. No amount of sleep can touch the fatigue and sometimes the insomnia is unbearable. Oh and one of the saddest things, for me anyway since I'd always been quite the donor before getting sick, was that Im no longer ALLOWED to donate blood for fear of infecting another person. They are only able to filter 97% of pathogens out of the blood at the banks.

I've known for months and months now, myself, that I have Lyme but the nurse (the doctor NEVER saw me at this medical facility in the 2 yrs Ive been going there now) said my tests came back fine. What I didn't know right then was that the testing for Lyme is extremely innacurate and has been altered to produce more false results! No this isn't something in my head- they really did take off multiple bands they test for because "too many" people were positive. The insurance companies do not want to pay for so many peoples weeks and weeks of antibiotics, for the research that needs to be done on this disease, and for the aftercare for people like me with chronic lyme disease and all that ensues. I've seen many others blogs and other activists liken it to the "new age HIV/AIDS" fight.

The infectious disease society of america says there is no such thing as chronic lyme disease because it can go into remission. However, studies show most people are only in "remission" for 4-5 weeks. The hold very tightly to the literal term of it being a period without symptoms- but we are still positive for the disease and when it cycles again in our systems we are either termed as relapsed or reinfected. Which is why their guidelines say not to treat with longterm antibiotics- that it won't do any good... however, it could save our joints cardiovascular and nervous systems!

Anyhow, I've been on a search for what "we" term as a lyme literate medical doctor. The closest Ive been able to come with my insurance is an infectious disease specialist in Tampa. He seems like a nice guy though he didn't listen very well... BUT he did have the knowledge to test me for any co-infections that are common from tickbites especially when Lyme is involved. He also started me on a high dose of doxycycline..which reminds me I still have to take tonights dose lol.

I went Tuesday and had my blood drawn (after almost a 2 hr wait) for ehrlichia, babesia, and bartonella.
I figured I would call when the office opens Monday and see if they have the results in...

Other than the nausea and really bad prickly/itchy skin when working out (Im assuming from the doxycyline) I'm doing pretty good right now. My joints- which it's usually my shoulder and hips- don't hurt. Yay! I've been getting naps in so I think that's making the insomnia worse- I seem to only be able to sleep 5am/pm-8am/pm  so it totals up to 6 hrs a day lol.

 My friends/ personal trainer and instructor went away last weekend for our network marketing meeting. I really wanted to go but it didn't work out that I was able- no one to room with, my family thought they could go then couldn't, and honestly I don't think I could've handled such a long time sitting ona plane/tarmac and sitting for the meetings. Hopefully next time will work out. It did give me opportunity though to just RELAX without "having" to go to the gym. I love going, it makes me feel good (usually), I love hanging out with my gym friends but sometimes it's too much of a strain and I feel Like I still have to go in order to keep up appearances.

So I slept- I took them to the airport thursday early evening, went home and slept til friday midday... then went back to bed and slept some more! I felt like such a lazy louse but I NEVER allow myself to tap out like that. I try to be in the middle of as much as possible in my circles of friends, I'm afraid that if I use this to start missing gym classes/ girls night outs/ect. that they'll stop asking but last weekend was me and the sandmans time. No one could ask me to be anywhere because they were all across country! well, most of them anyway, I did meet up for a movie with a small group of the girls at my friend nicoles house and we had sandwiches and chatted- then it was back to sleep : )

Anyhow, I do feel better now that I have been officially diagnosed.