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bob
Unregistered

ICQ? hiv+85/aids91
      #642 - 03/30/00 03:34 PM

ICQ? hiv+85/aids91: want contact w/PWAs w/neurological probs more
than OIs (Opportunistic Infections).

I was infected w/hiv in 6/85 by a man who had forged hospital
records to show he was hiv-, when he was actually part of a long
term hiv+ study there. I was the last in his series of "you're
getting this too" gross errors of judgment (on my part) before he
got sick & died. What karma.

I developed aids in 6/91 and left work 6/92 (what's with June?).
The way aids has manifested has been almost exclusively in
neurological problems. In 7 yrs I've never had an Opportunistic
Infection (PCP, KS, thrush, etc.); perenial diarrhea? oh my yes.

My viral load was 80-100,000 & now is 0-1100 My T-4/CD4 was 90 &
now is 230

HIV-drugs I'm on: Viramune, Epivir, Zerit, Dapsone

Could not tolerate: AZT, ddI, ddC, Crixivan, Norvir, Sequinivir,
Invirase & probably others I don't want to remember due to
endless dry heaving as a toxic dump.

Neurological drugs I'm on: Neurontin, Gabitril, Depacote (all are
anti-seizure, but work well w/other neurological disorders.

The 3 main neurological problems have been:

1. chronic Herpes Zoster ("shingles" - the chicken pox virus in
the nerve ganglia) on the top right of my head. Treated for 5 yrs
w/buckets of morphine; new neurosurgical technique 3 months ago
severed the right supra-orbital sensory (not motor) nerve,
eliminating the need for morphine. No longer a problem.

2. Peripheral Neuropathy in legs & feet: walking on "pins &
needles" + shooting Sciatic-like pains in legs. Successfully
treated w/acupuncture. Rarely a problem.

3. current remaining problem: Skin Surface Neuritis: entire body
feels sunburned, ranging from mild to severe to feeling like the
skin is burning and nerves "snapping" like rubber bands. I've
been on Neurontin (300mg 5x/day) for yrs, but just switched to
"super neurontin" Gabitril (8mg 2x/day) with good results. The
severety is greatly reduced, and I have a list of a dozen more
non-narcotic neurological drugs to go through to get this under
control.

This last process is long term since it takes 2 weeks for each
drug to build up, then a month of evaluating it to see how it
affects the recurring attacks. I need to be aware of the pain
enough to tell whether a particular drug/dose is effective. It's
pretty draining.

I've heard that around 10-20% of PWA have this neurological
manifestation of aids, either by itself or in addition to more
"traditional" Opportunistic Infections. In spite of losing around
50 friends to aids & more still with it, I've only known 2 other
people with similar experiences. I would love to hear from anyone
with this particular flavor & what your experience with various
therapies (& coping strategies when it just goes on and on!) has
been.

Thanks! -Bob



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bob
Unregistered

Re: ICQ? hiv+85/aids91 new
      #644 - 03/30/00 03:35 PM

I conveniently omitted to include my ICQ#12400292 for "ICQ?
hiv+85/aids91, want contact w/PWA w/neurological problems more
than (or in addition to) "opportunistic infections""



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bob
Unregistered

Re: ICQ? hiv+85/aids91 new
      #647 - 03/30/00 03:36 PM


Bob - I have too experienced the shingles outbreak. It began in
'95 and no one could figure out what it was as the manifestation
was different than text book cases. I had "chicken pox" type
eruptions from head to toe. It eventually moved into my right eye
and detached the retna. To prevent it from moving into the other
eye I am on 800 mg. of acyclovir 5 times a day. I was first
diagnosed HIV+ in the summer of '87. Current t-cell count is 4
and viral load is 420,000. I am not currently on any meds other
than acyclovir and bactrim. I stopped all meds in January when it
was believed the meds caused Hep B to develop. I have had little
success with drugs increasing t-cell count but they have driven
the viral load down - but the side effects are so bad I have to
keep switching meds.......tired of doing that. I have also had my
bouts with neuropathy in my feet. I tried a bunch of meds and
finally found that neurontin worked but I also stopped taking it
in January. My feet are numb and I experience occasional shooting
pains but not as bad as a year ago. My current curse is itching
itching itching - small bumps that itch and eventually
scar......tried all kinds of stuff - seems to lessen when I am on
a drug therapy. Have had lots of thrush and am going to morrow to
get into a drug study at the local VA. But, all in all I am still
kicking and doing quite well, all things considered. I eat well,
rest when I need to, on disability since 1/96 so I have time to
do the things I enjoy. Hang in there!



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bob
Unregistered

Re: ICQ? hiv+85/aids91 new
      #649 - 03/30/00 03:37 PM


thanks for your reply. the full body zoster episode made me take
a few deep breaths! i've been offline a couple of weeks while
reacting wildly to new drugs(gabitril "super neurontin" caused
dry heaving as have azt thru all the protease inhibitors). so i'm
off everything that doesn't make me feel good, which is fabulous!
i won't enumerate, but "street value" may give you an idea. i've
also had a bizarre itching like you mentioned. it happens on 2
occasions, everytime. one place is my right eyebrow & forehead
where the zoster was. it is always active, but since i had the
right supra-orbital sensory nerve severed in 2/98, that pain is
gone (the reason i was able to stop the mega-morphine i'd been
on). what i feel is a periodic Massive Itching along the
perimeter of the area, apparently because the neighboring nerves
were partly infected, but not enough to cause pain. it's like the
itching of a scabbed wound that is healing. the other kind is a
full body itch after getting out of shower or tub. about 5
minutes after i'm dry i have a low level but persistent itch
(covering the same area as the neuritis "sunburn" so it seems
related) for about 60min. the sunburn feeling itself is triggered
by overexhertion, any illness, strong sunlight. the neurologist
thinks hiv has caused symptoms that are known in non-hiv people,
and it's still just a matter of finding the right non-narco neuro
drug that works (like gabitril) that doesn't have disabling
side-effects (common story). still working on it... bob

if you have icq, i'd enjoy being in touch with you. my #12400292.
it's free mail/chat software from: http://www.mirabilis.com/
descript.,instrux,download&install software are all there.



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