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Old 04-09-2005, 01:48 PM   #5
tkgoodspirit tkgoodspirit is offline
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Re: If anyone needs help, I am here.

Quote:
Originally Posted by deejavu
Hi Tk,

After reading your post, many of your symptoms match mine, the on and off fevers, joint paint, weakness, etc.

I was diagnosed with CFS many years ago and then I found out that I really have Lyme Disease. Were you tested for Lyme?

I suggest reading the posts under Lyme as many CFS symptoms mimic Lyme. It is also important that if you do want to get tested for Lyme, that your bloodwork goes to the right laboratory as many of these Labs do not use 100% pure Lyme Antigen resulting in a Negative Diagnosis.

Good luck to you,
Deejavu
Hey again!

Actually, last year, I had called my rheumy and she said she would order a Western Blot for Lyme, but we never got around to it for some reason. I dunno, forgot or something, but I can't get the woman to respond to any of my calls now, ever since that incident where I wanted her to add the costo to my records. She is ignoring me basically. I even called and left her a message to refer me to one of the other rheumies there in the clinic. NADA So I begged my PCP to take over treating my FM, and he said as long as it remains simple. Well, he suggested the CFS and maybe if I call him, he can order the WB for me without me going through my rheumy. I don't know what to do about this rheumy, she's okay, as far as docs go, but I hate doctor shopping. I DID see another rheumy, his bedside manner lacked enthusiasm to say the least, and he wouldn't order any tests execpt the Hepetitis. What do you have to do for these docs? Fall to the floor with a pen jabbed at your writst threatening to open your veins so that they HAVE to take your blood! LOL This other rheumy also asked if I'd ever taken this or that med, but didn't prescribe me any, though he scheduled me for a followup 6 month appt. Wierd. He believes FM CFS and Myofacsial Pain Syndrome all roll together, so no wonder he wouldn't order any blood tests that may show something wrong with the immune system. Oh and another thing, I have recurring oral herpes. Now isn't THAT some sort of compromise in your immune system? I get sores in the corner of my mouth (fever blister, cold sores whatever they are called!) at least once a month, and sometimes inside my mouth. My PCP gave me samples of Zoverax? cream, but it dried my skin out so badly, I was flaking away! So he said I could take the Valtrax but would have to stay on it forEVER to help stop the recurrances. So how did I get the oral herpes. Sounds attractive doesn't it? Just what you want to tell folks. "Hey there, nice to meet you. Oh, those crusties in the corner of my mouth? That's just oral herpes."! AAAAAAHHHHHH! LOL My husband is like, "can I get that?" I said only if you kiss me on the mouth when the sores are there! LOL So he's been kissing me on the forehead lately! I'm 46! Since I get the outbreak at least once a month and it takes a couple weeks for them to clear, no smoochies for me!

Well, I hope SOMEONE comes up with some kind of blood test that will confirm CFS and FM, so we aren't like little guinea pigs. I know that there is a test that will confirm FM. It involves a spinal tap though, and most docs won't do that. It's a test for Substance P which, (now I can't remember) is either low in FM patients or high. I think it is very low, which is a common denominator for dx'ing FM. But who wants to have a spinal tap. It is a substance found in our spinal fluid. You'd wonder if they couldn't harvest it some other way.

Anyhoo, thanks again for your reply, and I hope I can get somebody to do some blood work on me. My best hope is my PCP, he's pretty agreeable with most things I ask of him. I've had him for 8 years, bless his heart, he probably agrees to things just to keep me out of his office! LOL

Have a good weekend!
tk