Re: Moderator: Self -diagnosis of CFIDS - Fibromyalgia Note - long reply

[Guest guest]

>

>

> Sorry to read that you have HCV. I wonder if you or your doctor

might

> want to contact Dr. Montoya in San Francisco. He is treating

cfs

> patients with Valcyte. Have you ever heard of HCV being treated

with

> Valcyte?

Hi a (and everyone else!),

Thanks for the info - the S.C. doc sounds great and the Zadixin

sounds intriguing - will have to look into it. I dunno about the

Valcyte. It was used as a treatment for cytomegalovirus (CMV) -

haven't really heard much about it being used for fibro at all. I do

know that it is extremely toxic with all kinds of dire warnings...

meds that I generally try to avoid.

And as this really isn't a hepatitis forum, I won't go into that much

at all - But I've always looked at my hep c as being a virus as

opposed to a " liver disease " . From the time that I was diagnosed in

2002, I have tried to build up my immune system, eating healthy,

supplements,milk thistle, exercise, etc. And I pretty much refused

the current interferon/pegasys treatment - I have a genotype of 1b,

which has shown to be the least receptive kind to the treatment. I'm

pretty scattered with my emotions running amok at times and it's a

struggle to keep my weight above 110 - (5'4'' fifty-something

female) I'm divorced with 10 cats and pretty much alone in New

Orleans. Not conducive qualities to undergo the rigors of 48 weeks

of a treatment that I don't have much faith in to begin with...

Also, miraculously, my liver biopsy done in 2003 showed minor

inflammation - Stage 1, Grade 1, and my LFT'S were/are generally

normal - with scary fluctuations of my ALT/AST. Up in one test, back

to normal range in another test done 3 months later. All of my

other " routine " blood work is " normal " .

So I am taking the same approach now as I did back then, just try and

maintain and keep my liver healthy until " something better comes

along " - meaning something that actually works without doing

irreparable harm to the patient.

I am pretty much of a walking virus - seem to have had a lot of

them....except, by the grace of god or the cosmics, HIV. And I have

long suspected a correlation between all viruses - CFIDS/ Epstein

Barr, Hepatitis, and even fibro. They're all immune system

dysfunctions. The fibro has been a very real problem lately though!

In unbelievable pain, extremely sensitive to light, smells and sound

one day and then able to go on a brisk 2 mile walk the next, with

little discomfort. Able to whiz through the " challenger " sudoku one

day and unable to count to ten the next.. Bizarre and weird should be

included in the diagnosis of fibromyalgia - or the " Irritable

Everything " Syndrome as someone noted.

At the teaching hospital, I had been seen at a lot of different

clinics - but Gastro handled my hep c. However, after Katrina, all

hep c patients were sent to infectious diseases. And I must say,

that this was the only time that I felt comfortable with any doctors.

Finally, I was able to discuss stuff that I had been reading - the

possible correlation between all of these viruses, the possible

implication of other viruses, particularly, HHV-6. But that didn't

last long; as the medical community it slowly pulling itself together

here, the Gastro clinic re-opened and I am/was back there being

treated (or not being treated in their eyes) for a virus..... That's

why I like the idea of the S.C. infectious disease doc too.

I finally got my disability with Medicare and Medicaid just kicking

in this month so I finally have options other than the teaching

hospital. And let me quickly put in - I am very happy that the

facility was there for me and is there now - I wouldn't have had any

health care if it hadn't been. I know that they have very limited

funding too. But I am very tired and frustrated at beating my head

against the wall with some of the treatments and approaches still

being taught and used at this teaching facility (and probably most

others in this country...) My most recent rheumatology appointment

was an example of this - I mentioned to my resident about the new

thinking - neurotransmitters, serotonin, etc. and he became very

angry - of course fibromyalgia is a rheumatic disorder - he pretty

much growled at me. So I shut my mouth and accepted my prescription

for Soma and went on my way. BTW - Soma is the only prescription med

that I take (no OTC's either) - seems to be easier on my liver - and

unlike other " muscle relaxers " really seems to interrupt the pain

signals from my brain to my body. Whatever, it works for me.

Sorry to digress - I know that this isn't a regular type forum - but

I'm going into detail about my personal medical stuff just so you

might get a better picture of me as a " patient " .

Finally, as I mentioned, I found a real doctor who is testing me for

all kinds of things - from parasites ( I was in the water during and

after Katrina with cuts on my arms and legs - I also have 10 cats and

was very involved in cat rescue when I moved back here in early 2006 -

being exposed to all kind's of weird stuff - lung worm, giardia,

etc), HHV-6, endocrine disorders, you name it - I'm being tested for

it kind of stuff. My next appointment isn't until Thanksgiving week

so I won't know the results of any of these tests. I'm just so happy

that I finally have a doctor who I can believe in and one who

believes in me. My original appointment with her was in mid-February

2008 (I made the appointment in early September) but due to a

cancellation, I got in a couple of weeks ago. The typical waiting

time for an appointment, with or without insurance here in post-k New

Orleans is 3-8 months.

Anyway, thanks for the response - and thanks to all who have been

interested (or who have waded through - lol) in reading this. I am

just so grateful to have found a forum where intelligent information

is being discussed. I've been pretty disappointed with some of the

other " support " groups. And I'm sorry if I've broken any posting

rules - I certainly don't want to upset anyone or post anything that

will offend anyone. Just trying to share my experience and trying to

gain some knowledge and insight on other viruses/disorders being

discussed here.

Thanks again,

M