Re , Hhv6, Acycovir

[Guest guest]

>>Hi folks, I am being tormented by daydreams of bodybuilding and marathon

running. I'm almost having near panic attacks when I think that I might never

be able to do these things again. This is insane! This disease is so wicked

and evil. We shouldnt have to live this way. I am so very jealous of the

healthy, many of whom take it totally for granted and who abuse their bodies

in ways I couldn't imagine now.<<

Hi , hang in there. I can relate to your fears. I had a gym in my

house, jogged for years, worked 60 - 80 hours a week, (3 jobs), did ballroom

dancing, and had a social life. And though sick for over 10 years now, I still

dream of getting some of that back, if not most of it. I too don't put much

credence in the " five year " theory. The fact that you're on this list, and

proactive, says you have dug in your heals. Keep the faith.

>>My real reason for writing; I did the calculations and it seems my new doctor

has me on GET THIS - 4000 mgs of Acyclovir a day!!!!!!! Thats 800 mgs 5 times

day!!!!!! today was day one, and I think it makes me feel slightly " pukey " .<<

, I was on that regimen a few years ago myself, and I'm approximately 105

lbs., maybe 110 then. I could not get past 7 days. By day 3, I was down in

deep sleep 22 hours a day, barely able to talk, head feeling like it would blow,

lymph nodes swollen to the umph (is that a word?) degree, fevers and mega pain.

By day 5 had reduced it to 800mg. 4 times a day. And by day 7 I quit! This was

under the care of a Bay area doc. Later Dr. confirmed I was overdosed.

However, let me say that my most prominent reactivation was Epstein Barr, not

Hhv6. A couple of years later while on Valtrex, supposedly the new improved

form of Acylovir, it neurologically impaired my ability to walk by day 5 on a

very conservative dose. I had both sensory and motor nerve impairment, meaning

no communication from brain to legs in order to work, thus could not walk, but

overstimulation of sensory nerves in that the slightest movement of legs were

excruciatingly painful. And so, I suspect Epstien Barr either resists this

class of antivirals or that some other stimulation was going on with an unknown

secondary virus. What I've read so far is that both drugs seem to work well for

the herpes 1 and 2 types. I'm not sure of it's impact on Hhv6. Thought I'd

share if perhaps you may have other viral involvement.

>>Listen I was looking at the statement that Dr. Ablashis Washtington DC lab

printed for me about my spinal tap done at Dr. 's office. It says

that " ACTIVE " HHV-6 is detected in my cerebrospinal fluid. By the way, does

anyone here think that having active HHV-6 detected in my

spinal fluid is significant?<<

Dr. , I believe, from many conversations from the past, believes we all

have inactive Hhv6, as most of us have been exposed in earlier years. Forget

what the percentage rate is on that. So, what he looks for is an activation. I

also know that Dr. does not randomly do cerebral spinal fluid testing

for Hhv6 unless he suspects it might be active from the way a patient presents

clinically, i.e, symptoms, since spinal taps are so invasive. So the fact you

do have a positive test from CSF, IS a big deal! Have you considered transfer

factor. I think I may have mentioned this before. I know your next question

may be but what doc is using that? I don't believe Dr. has made a

decision on that treatment protocol, but I do hope you consider the treatment

and find a doc who does advocate this. Only person who comes to mind at this

time is Dr. Salvato in Houston, Tx. I believe you can fly down, get evaluated,

get a prescription, then do 3 or 6 month follow ups. If you can afford it, it

might be worth a try. Hopefully someone else on the list can direct you to

something or someone easier accessible.

Best to you,