OK, I already have mentioned this in some of my email replies, so bear with me.  I'm getting through all this information, as much as I can stand every night, and it's all going well so far! Just so much to read!! 
So my office visit was on Tuesday and the patients in the office I met were really nice and they all had stories really similar to mine. Unbelievably, there were 2 other patients in the room from Maryland as well! My mom was like, "They have to open a clinic in Maryland now!" Or not, if they keep coming to PA.
I saw the doctor for 1 hour and 45 minutes, and he listened to me and agreed that it definitely sounded like I had fibro. He spent a lot of time drawing me diagrams of what my cells and brain were doing. He told me he'd be taking blood to run tests on my thyroid, hormone levels, levels of nutrient deficiency, pituitary, and adrenal glands. I came back 30 vials later (feeling like hell) and he started me on an IV of... well I don't know what it was, but it made me feel much better. I'm supposed to come back weekly for similar IVs, but it's $250 a pop and 320 miles RT, so he's going to see me every 2 weeks instead. Maaybe Mel can update a little on what's in the IV. I just can't find the piece of paper where they wrote down all the meds in it.
In any case, I went today to pick up my syringes and needles, plus all the pills the doc prescribed me. In all this is what they have given me:
Their vitamines:
DHEA
Pro-Boost
Energy Extract
Rest and Restore
Release and Renew
3 injectables: AMP, B-12, and Glutathione
Baclofen 20mg --one at night for sleep, but I think I'll just stick to a half
Hydrocodone 5/500 – 2 a day for breakthrough pain (I was nervous he wouldn't prescribe me that one, and I am RELIEVED he did, cos now I can move without too much pain.)
Add that to the 19 other pills I'm taking for IBS plus the depo provera shot. It's a lot of meds for someone who doesn't "look sick," but I don't care. Whatever Works!
I did have a brief moment of "I don't think I can handle this" when I picked up the syringes. It passed soon enough, but it left me a little shaken. I'm going to have to get through my fear of needles pretty quick, I think. BF says to practice on the dog.  Just kidding. My mom keeps offering to do it for me, but my spidey sense says NO WAY. My idea is to go to the health clinic in the area and make them teach me how to do it. I'm going to make an appointment and say "I need a shot" and just show up with my tupperware container full o' stuff.
The best thing, of course, is that I met up with Melissa while I was in PA, and she's going to let me stay overnight with her the day I get my treatments. She goes every month for treatment, so we're going to synch up our schedules so we can go together. The treatment room (sounds scary but it isn't ) is actually a room full of barcoloungers where patients get their IVs and talk to each other about how they got there and what treatments they're on. During mine, a girl named Suzane told me her story and gave me a hug when we were leaving. Another named Jolie was there with her DH, and she too was bedridden for 2 years, like I was at 19. It was unbelievably affirming to talk with them. It was *almost * just like the boards, with the free exchange of information and support. Really cool.
So I go back on the 27th of February to get my blood test results and do another IV treatment. Before that I'm going to have to start giving myslef the AMP, B-12, and Glutathione shots once a week. (!!!) I suppose the weekend is the best time for me to do this. I just found out they're going to have to go in my thigh. I might have to draw a cartoon strip of Nelly's First Jab in order to convey the utter absurdity of giving myself a shot. Mere words will not do.
The only downside to all of the help I got this week is that it set my mother back *gulp* $2,530.00. When I consider that's as much as my hospital bill last year (3 days in a room with a nasal-gastric tube and pain meds) and the hospital stay did nothing for me, well, that might be a bargain by comparitive medical cost standards.
I hope this therapy will be what I'm lacking. I don't know what I'll do with myself if I get well. I can't imagine having all the energy of a normal person. (Actually, I'm having fun imagining having all the energy of a normal person!!!)
~nelly~
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Re: What IV are you getting Nelly??
