Need some inspiration...

That's a good point. And makes me want to get on anti-virals pronto.

However, I've always been hesitant to add variables to an experiment. And my surgery could be seen as an experiment. If I start the anti-virals now, I won't know if it was the surgery, or the antivirals that helped.

 

Who cares which one it is? The goal is to make it stop, not prove a hypothesis.

 

I agree completely .... in theory. When i started antivirals with my family dr we both knew it was an experiment and i was actually very reluctant to try them because i am the queen of side effects. At the same time i had used eye drops for suspect glaucoma on the left eye, the side of my meniere starting a few months before the appearance of hydrops. I hemhawed around with the rx for acyclovir in my ourse for weeks until my husband said 'what are you waiting for!' I took them and in 5 days, i began to see a faint intermittent change. But two weeks earlier, i had -out of a fit of something- abruptly stopped the eyedrops. My doctor had specifically urged me to do only one change at a time and i completely get the scientific method.

Within a month of starting the acyclovir i judged i had a 60% improvement and was kind of stuck there, but it was enough to be life changing for me.

Then i read of anecdotal reports that the eyedrops had been known to cause flareups of herpes viruses in the eye. Dr Derebery looked this up and said, nope, not a single report listed of that. But will i ever be sure? No. Do i wish i had been just a little more patient. Well, in theory, yes, in practice, i am a human who deserves a decent life first and a contributor to the body knowledge of doctors who dont give a flip what i report to them second.


What approach was your surgery? Middle fossa, retro sigmoid, something else? Not sure if these are the vns approaches but different ones are noted for different side effects.

Also, not to muddy the experiement even further but ... menieres is i believe now widely considered to be an immune system gone wrong thing and there are many ways to take pressure off the immune system. That was the idea behind the allergy shots i took. For the longest time it bounced around in my head 'which is it? Virus or allergy? Cant be both' even though i seemed to respond to both. Finally i accepted the immune system thing and my experience made sense.

 

GL, Mac! And be patient. It can get worse before it gets better as the virus fights back. Stay at the highest dose as long as you need before dropping down. Some folks have taken a few months there.

 

Scott, how long did you have MM before you took AVs? and when you say your hearing is fully recovered, did you ever take audiometry before and after AVs?

My audiometry result since 4 years ago are relatively stable @50-60 db. my issue lately is with the off balance and tinnitus.

currently on maintenance dose of acyclovir.

thanks.

 

I've had it as long as i can remember. Was diagnosed in the 90s. Yes, i had hearing tests before and after.

Have you considered trying Famvir or valacyclovir?

 

I took valtrex for almost a year before switching to acyclovir due to cost issue. no improvement in hearing with both.

 

Is better than nothing. Take 1000 mg of lysine 3x per day on an empty stomach.

 

It might be enough for some people, but definitely not for others. Every time I've been on 2 gms/day or Valtrex I've had a resurrgance of symptoms. 3 gms/day works. (Now I'm taking famvir to see if we can get me down to a lower dose.) Did you show him Dr. Gacek's article, which clearly states the amounts? I'd check in with your doctor. Maybe it was a mistake.

 

If your doctor doesn't care enough about you to script the proper dose, then fire him and find someone who does. Any doctor or nurse practitioner can script this.

 

Get both scripts but only use one at a time

 

What are the dosages? The number of pills doesn't really tell us anything...

You typically only need half the dosage for Famvir; that is, 500 mg of Famvir = 1000 mg of Valtrex.

 

Do the Valtrex, if it's name brand. 3000 mg of Valtrex is better than 1000 mg of Famvir. You can always switch later if needed.