Marti - Re: Antivirals - herxing?

[Guest guest]

Hi Marti-

When you say that Valtrex is remarkably different, what do you mean? I started

this discussion because I am feeling so awful (like all my CFS symptoms are

screaming) I was thinking that it was a good thing - that maybe its from the

viruses dying (??) So is it a good thing, or am I suffering needlessly? How

might Valtrex be different?

Thanks-

Joy

> >

> >

> > Hi Judy-

> >

> > I was speaking about acyclovir. I'm taking 800mg 4x daily. I have no idea

how much is absorbed that way vs swallowing. Also wonder if Valtrex is much

better. My doc just told me that it was quite a bit more expensive. I agree that

there needs to be much more research!

> >

> > I had sudden onset also, 20 yrs ago! My doctor thought it was viral at the

time, but I never got treated. I actually went down the sorry path of

antidepressants & treated like it was all in my head! I was totally bedridden

too - could hardly get out of bed to go to the bathroom. It's been a very long

journey (too much to go into)

> >

> > I believe now that the viruses (EBV, CMV & ?) have caused so much damage that

I will never be well - can only hope for better.

> >

> > Thanks for the elderberry suggestion. I'm presently going through a rotation

diet for multiple delayed allergies, so may not be a good idea for now. I also

got accepted into the clinical trial for energy supplements (haven't started

yet). I guess the best we can do is to keep trying and always hope for the best.

> >

> > Best wishes to everyone here...

> >

> > Joy

> > > >

> > >

> > > Hi, Joy. Which pill are you trying to absorb through the oral mucosa? I'm

getting confused here!

> > >

> > > My own experience is that I take 6-8 grams of Valtrex a day and 4 grams of

lysine a day, and have had no side effects with either. (I also sometimes take

50 mg a day of zinc, although taking it regularly sometimes seems to produce

nausea.) I am a patient of Dr. Lerner in Michigan, and he has been monitoring me

very closely.

> > >

> > > I became ill on September 13, 2008, and declined very rapidly. I soon was

sleeping 20 hours a day, too weak to shower most days, often too weak to sit up

for more than 30 minutes at a time, etc. I was lucky in that I didn't have much

pain or nausea, but it still felt like a sort of living death.

> > >

> > > I started on 1-2 grams daily of Valtrex or acyclovir about three months

after I got sick. This seemed to stop my decline, but didn't improve things

much. About seven months after getting sick, I started being treated by Dr.

Lerner and he prescribed 8 grams a day of Valtrex for me. (I weigh about 230

pounds, and if I weighed less, the dose would have been lower.) I'm supposed to

take the Valtrex in 4 doses of two grams each, but it's hard to fit all these

doses in, so I often end up taking 6 grams a day instead of 8.

> > >

> > > I have been on the high dose of Valtrex for just over two years, and I

have greatly improved. Most days, I am able to spend a total of about 12 hours

out of bed, can shower, and can do one or two 30 minute sessions on my feet

making dinner or shopping. (I'm still not well enough for a regular job,

though.)

> > >

> > > In the past few months, I have started taking elderberry extract, and feel

that this is also helping me. There are a number of studies showing that

elderberry has potent anti-viral effects and also stimulates the immune system.

Since elderberry has a long history of use as a food, it is generally safe.

However, stimulating the immune system can make allergies, asthma, or autoimmune

problems worse, so for anyone who has these problems, I'd suggest consulting

your doctor before trying elderberry.

> > >

> > > My biggest problem at the moment is paying for my medical care. Valtrex is

way, way expensive, especially in high doses. For those who want to try an

antiviral and can't afford Valtrex, elderberry might be a good option.

> > >

> > > There may be a number of different causes of CFS out there, but for those

who have a fast, flu-like onset (as I did), I strongly suspect the cause is a

virus, most likely a herpes virus. I feel that there should be a LOT more

research on using antiviral agents to treat CFS.

> > >

> > > -- Judy

> > >

> >

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