Saw Dr. Gacek today!

Welcome!

How about diuretics, have you tried them? They worked for me and still do. Meclizine does nothing for me. Antihistimines make my symptoms worse and Mec is an antihistimine. I too love summer and they seem to be worse for me than winter the past 2 yrs :-\. I live in Connecticut on the shore.

Mya

 

Sam,

You make good points and make sense, except overuse of antivirals does cause "super-viruses" just like overuse of antibiotics has created "super-bacteria". This issue isn't about whether your body gets used to the drugs. The issue is about simple biological evolution. For instance, say you had 10,000 herpes viruses in your body and you took anti-virals, it would kill perhaps 9,000 of those and relieve your symptoms. If you keep taking anti-virals permanently, you may kill off another 90% of the remaining 1,000, but then the 100 survivors will have some sort of mutation or adaptability that's made them anti-viral resistent, then you're stuck with a virus that's free to replicate as it's resistant to drugs. This is the same reason that chemotherapy loses its effectiveness in cancer patients when they have a recurrence of cancer. The oncologist has to use new drugs as the cancer cells that survived the intial chemo are now resistent to the prior drugs. Viruses, bacteria, and other lower forms of life are highly adaptable and evolving. Even slightly higher forms of life. For example, the continual use of anti-flea medications for pets has created a strain of flea that now is very hard to kill, and researchers are continually having to create new and newer forms of anti-flea drugs to combat them. This is why those laboratories can create super-viruses, etc., because it's relatively easy to get them to mutate and evolve. Your run of the mill biology student could easily create these things, if they had multi-million dollar labs and if it weren't for the fact that access to highly virulent forms are heavily controlled. We played around with rhino-viruses in undergrad school as part of lab class. In fact, they often create the super-viruses by simply exposing viruses to anti-virals, then manipulate the viruses that had some sort of mutation that enabled them to survive the drugs.

It totally makes sense to me all that you say about the success anti-virals have for some or maybe even many meniere's patients (in fact I'm now thinking of broaching the topic with my doc when I see him next week), but I don't think you would find many immunologists, virologists, or pathologists that would think that the permanent use of anti-virals is a good thing.

 

Jkp, I would like to know wher you found this info on the super virus claim. Virus and bacteria are two different things. Bacteria may host virus and antibiotics may kill the bacteria and one can grow resistant to antibiotics from improper use. Anti viral works completely different. I see 11 different doctors from time to time 6 recently and 4 of then specialist. They disagree on your antiviral immunity and super virus theory. They advocate lifetime antiviral for anyone losing nerves to virus. Every pharmacy has the info on antiviral therapy use and also maintenance use. They know the doses, the risk, and will tell you this super virus thing is only a rumor ... there is no medical research evidence to even suggest such. I have studied this out very well as my second book deals with this topic. I found evidence of manmade virus, but not virus mutating into a super virus that anti-viral can't arrest because of immunity.

If we use your reasoning that the antiviral doesn't arrest all the virus, then using it at all wouldn't do any good. If it loses power after a certain period of time then allowing the virus to become a super virus, then how can we account for the genital herpes patients that have controlled symptoms for years now with daily use? Why hasn't the virus mutated and become an uncontrollable super virus?

I say this respectfully, I think this super virus from daily anti-viral use is just an internet invention, science fiction with no research or scientific explanation.

The topic here is vestibular virus and you need to realize how this all happens. I recommend Drs. Gacek's book so you understand how the virus is harbored in the trigeminal nerve and how theraputic acyclovir/Valtrex renders it dormant and a daily regimen of a reduced dose keeps it at bay fairly effective and should it become active, then a return to a 10 day increased dose will act more quickly than if one starts with no acyclovir in their system. Many never have any return of symptoms until they go off the daily dose thinking it is not doing anything, then symptoms return with a vengence. This happened to me and many others.

If I can see medically documented cases of super virus from daily antiviral use, then I sure want to study this further and reconsider, but I find none and my doctors know of none at this time.

Also remember the vestibular symptoms one has may not be affected by acyclovir if one had nerve damage from virus. This doesn't mean it is not working, just the crime has already been committed. A putting a murderer in jail doesn't bring the victim back to life, but will prevent the killing of more by this person. Virus can murder nerves time and time again. This is why I have MRI's on occassion ... to check effectiveness of antiviral by looking at white matter progression as well as what can be seen of the Trigeminal nerves and vestibular nerves....

 

This is interesting to me Sam. So the antivirals may not help my dizzyness, etc. if it is due to damage already done? So then how does one know if they should stay on it or not? I've read here about many people who have said the antivirals dp nothing for them. Staying on them long term to save the other ear? How would I know if it was helping? I just might never get worse symptoms in my good ear from dumb luck.... Help me to understand!

Carol

 

They should stay on them only if they suspect the cause is viral and can find a doctor to prescribe them.

 

Carolanne,

First, I have met Dr. Gacek during a seminar hosted by another Neurotologist Dr. in the Rochester MI area who I was seeing for Menieres Syndrome mainly for ringing in my remaining good ear and very slight dizzyness most of the time which started 3 years ago this coming October.

As mentioned in the thread earlier by lots of people, they started me on the ($$$$$) Valtrex which I don't think really did anything for me other than maybe reducing the slight Dizzyness I was experiencing but it comes and goes at its own will anyway. My main problem I was seeing the Dr. for was ringing that was getting louder and louder and causing me great difficulty in hearing what people said. A couple years ago, a lot of people here were talking about Acylovir (sp) for hearing loss. I begged my Dr. to switch me from Valtrex to Acylovir multiple times since Valtrex was not doing anything for the ringing. After several visits over quite a few months with zero improvement and a feeling that what ever was causing the ringing was starting to win and cause my hearing to go, he finally agreed to switch me to Acylovir. With this new medication, he told me to take it full dose (forget what it was now) for 3 days and see if the ringing subsides. It did some but came back after about a week. I proceeded to take the medication for maybe 2 months per his direction along with all the other herbs and stuff (26 pills/day) and driving me nuts trying to keep track of it all. The final straw was when he told me there was nothing he could really do for me and that I would need to wait this thing out then go from there. It took about 3 weeks to wein me off all the medications and junk I was taking before I called him and cancelled all my future visits and started seeing a different Dr. (keep in mind that this was NOT Dr. Gacek but a Dr. who studied under Gacek as I was told.) BTW. I started feeling better once I got off all the stuff as well. Not sure why. Maybe psychological???

I hope you have better luck but do keep in mind that if Valtrex does not help, ask for another. They work to achieve the same results but may do so differently for different people.

I can say that most of the time I wish I never went on the drug since when I finally came off it, my hearing degraded from the already bad maybe 35db loss to 85-100db with zero speech recognition over 15-18 months. Needless to say, I have been fitted with a Cochlear Implant in my worse of my two ears and can hear pretty well considering the alternatives. I still have ringing as that was not lost when the hearing degraded. I really wish it would take a hike but seams happy in my head. I don't know what the future brings but maybe I will decide on a second Implant and hopefully at that time, when they cut into the cochlea and drain the fluid, the ringing may finally stop. Sometimes it is pretty quiet but not tonight.

I wish you luck as I know it is a very difficult situation. I really hope you have a good outcome with the anti-viral approach like Johnny B and many others. I have always had to remind myself that there are a LOT of other worse things in life. Menieres is Life Altering NOT Life Ending. Took me a while to come to the realization after the many tests I under went all coming back clear. I had to change my outlook on life at that point and really start listening and reading my own body to figure out what it needed.

The Viral theory does make a lot of sense in the way my hearing loss progressed and what it felt like while I was loosing my hearing. I know it is very hard to find data proving one way or another, Viral or not, when the only real way to know for sure is by doing an otopsy. I can understand why those standing on the other side with different theories may say he has no data to prove his belief and may try and make him look as if he knows nothing. I am a statistic that anti-viral medication did not work. I just don't know if we tried it to late or if my body chemistry wouldn't allow it to work.

PM me if you have questions. I try and check my box in a couple days. Going out of town for a few and don't get on this site to often any more. alldeaf.com Cochlear Implant threads seam to be closer to my situation now. Sorry about that. Been dizzy for the last couple days so I came here, saw your post, figured I toss out what I know. Wonderful people here.

Steve

 

I can say that most of the time I wish I never went on the drug since when I finally came off it, my hearing degraded from the already bad maybe 35db loss to 85-100db with zero speech recognition over 15-18 months.

Do you think the antivirals caused the hearing loss?

Carol

 

I am alittle confused some mention Valtrex and some mention Acylovir.
I want to discuss this with my doctor but not sure which drug?

 

Most people start with acyclovir. To my knowledge valtrex is stronger, but not usually necessary to help viral mm. My doc put me on valtrex because I have had mm for so long and my bad ear is really bad, almost deaf, etc. He's trying to keep the good ear, which has tinnitus and slight fullness, from getting any worse.

 

Well, I've been on the valtrex 1000mg 3x day for 3 weeks, and now I am doing 4 weeks at 1000mg 2x day. I do not think I am one of the lucky ones :'( because I have been dizzy off and on for the past two days. Before that I thought things were going pretty well. I am so disappointed.