Thursday, October 23, 2008

October 23

I think that's the date isn't it? I spent the night tossing and turning. At one point woke up sweating. I haven't had a night like this in awhile. Today I have that agitated exhaustion. My body feels like a car who's engine is revving but has no gas or battery. It's exhausting and causes my anxiety to spike.

I had to prepare for my regular doctor visit. I'll call him my insurance doctor. I like him in that he's quirky but he's very dismissive of anything outside mainstream medicine. I do think he's a good doctor for the most part. He is the one who referred me to the rheumatologist where I got the lovely diagnosis.

Though he grumbled about it he did agree to order bloodwork for HHV-6, EBV, and Chlamydia Pneumonia (cpn). When I asked for the blood test for cpn he said dismissively, "everyone tests positive for that." First of all, I don't think that's quite true. Second, an smouldering infection like this in someone who's immune system isn't functioning, isn't a good thing. But he agreed to do it and I was glad.

He also chided me for being on Cortef. He doesn't believe in adrenal insufficiency-only Addison's. And he was quite annoyed when I told him my CFS doctor's thinking that people with chronic illness often have adrenal problems. He scoffed.

He was, rightfully so, annoyed at my CFS doctor for not following up on my TSH levels and tests for liver functioning and a couple others that he grumbled about. Clearly he doesn't believe there is ANY help for people with chronic fatigue.

He also told me the reason I've gained 30 pounds. Yes-30. I've never weighed this much. Ever, ever, ever. He said I've gaine the weight from taking the Cortef. I didn't bother to try to tell him that my brain is confused and that there are toxins that my body can't get rid of so it stores it in fat. Nor did I tell him my CFS doctor's theory that my brain believes my body is in a state of emergency and is doing things to protect it from shutting down.

But he did listen to me when I told him that lately my muscles in my back, back of legs are really sore and, that I've been waking up with them feeling tight and stiff. He ordered a CPK test. When I asked what it was for-he mumbled (which he does when he doesn't want me to ask more questions) oh, just some test for muscle tissue break down. I like that he can think outside the box sometimes.

He's also testing my kidney function. He wrote a prescription for Prisolec and believes I have an ulcer. He'll also test for that.

It's so interesting to be caught in the crossfire between a good mainstream insurance doctor and a good integrative CFS doctor. Both have their strengths and weaknesses and both can be equally dismissive of certain tests. For example, my CSF doctor should be following my Thyroid function but he's not. He also dismissed my complaint of muscle pain. This is an unusual complaint for me. I don't talk about a lot of things that happen with my body. When I do, it means it hurts and it's more than an occasional thing.

I'm glad I went today. I'll get the information I need to make a decision about Valcyte. Oh, and my doctor today was quite annoyed when I mentioned my CFS doctor ran a RNase L panel to use to determine whether or not I should go on Valcyte. He actually rolled his eyes and sighed. I chuckled to myself.

He ordered a Comprehensive Metabolic Panel, CBC, test for Heli bact, HHV-6, EBV,CPK, Chlamydia Pneumonia, and TSH.

The refill of Valcyte arrived today from Roche. This time they included a list of possible side effects. It was frightening to read.

I asked my insurance doctor what he would do. His response: "If I had refractory chronic fatigue syndrome the way you do, I'd take it."

1 comment:

Renee said...

It seems like the tests are endless at times, doesn't it.
I found your article on the Sonoma group very interesting...and hopeful.
Thanks too, for your post to my blog ~ I was comforted by your words on Bartonella herxing. I find when the nerve pain is this elevated that it is hard for me to think clearly on my own. I am doing some research on this, yet know I must listen to my intuition and the doctor...she often tells me to listen to my body to make decisions too. She is an integrative doctor so I am grateful for that.
Again, thanks!