Meniere's and a Virus Connection?

Re: Virus Connection?

Twinkle, Barr Epstein virus is the most common virus in humans. If it has caused vestibular symptoms then it is well passed anything Lysine can do for it. Some report vitamin B deficiency as a factor in agrivating BE which is a Herpes virus. Acyclovir is the most effective way to put and keep the virus in remission.

Now I say this with all respect ... your Barr Epstein is no doubt the cause of your vestibular symptoms in my opinion. This by definition means you don't have "Meniere's." The good news is the Barr Epstein can be arrested with acyclovir and will probably require a lifetime daily dose to keep it inactive.

A scientific diagnosis is required to determine what the inner ear problem is and prescribe the proper regimen, I.E. for hydrops the diet to control insulin, etc.

 

Re: Virus Connection?

Dear Sam,

I have been to your site and I appreciate your position. I believe it is important to note that just sounding like science is not always really science. I have worked on many EBV research projects over many years both in the lab and in clinical settings. I think that you will find that it is news to most researchers, the NIH, and the FDA that EBV can be arrested permanently by acyclovir.

Please do not think of this as a criticism rather it is, in the kindest possible way - me just suggesting that a critical look at ALL the literature does not support such a claim. It would be nice if it did, it just does not. I am not saying the international researchers, the NIH, and the FDA are the gods of all knowledge. I am just asking you to qualify your statements by the recognition that you are at least as limited in your knowledge as they are (perhaps just a tad more limited? )

XX
OO

 

Re: Virus Connection?

Moogs,

When you find something that works for you to ease or alleviate the symptoms of this BEST MM (referring to Acyclovir) you tend to want to get up on your soap box and blow your horn.

I know I did on this site when after many years of suffering I discovered Acyclovir and wanted to tell the world...

Acyclovir is still quite a controversial treatment subject for many, however I recall the mere mention of Acyclovir as a anti-virual regime was almost TABOO here!

Then people like myself and many others who don't chime in because they have found relief and have no more reason to come back...

I think Sam's signature says it all and I support what he is doing, although I don't agree with all he says (but that's another post.)

"Withholding information, keeping others in ignorance, is one of the great crimes against humanity." Sam C 2007

 

Re: Virus Connection?

Moogs, I actually agree with you ... that anti viral does not arrest BEV in all cases. The clue is that so many other factors are involved. Then we find argument over what consitutes remission. For any new research or studies supporting a claim, someone has another contridicting it. So how can one make a goode decision? Personal experience is a good starting point, but if one is mislead by medical professionals to believe that anti-viral has no effect on herpes virus attacking the vestibular system or worse yet that herpes virus never attacks the vestibular system, then this person goes down as one that anti-viral couldn't help based on theory. Who does the studies? Many times there is a hidden agenda behind the studies. My PCP will tell you their success ratio using acyclovir to arrest Barr Epstien virus is the majority, no not 100%, but if 100% was required to prescribe a drug, well the Pharmacys would be closed for lack of business. Nothing is 100% concerning virus and vestibular.

 

Re: Virus Connection?

...As I've said many times, theories aren't worth the paper their written on. If someone who has any kind of vestibular disfunction, has tried an antiviral, and gotten any kind of relief is the main point. All a person should do from that data is to determine if the antivirals are safe enough to try. Which should be a discussion between them and their doctor. If the doctor says their safe but won't try them because he doesn't believe they will work based on theory, you need another doctor.
...My doctor has the same philosphy as I do, if it's safe then try it. If it works, great. If it doesn't work, then we can say we tried and then try something else. I absolutely believe there are those who have been helped by the antivirals even though they didn't help me at all. There's no reason anyone would lie about that so we've got to believe them.
...I'm not recommending that everyone try them. I only recommend that people try things that are safe. Each individual has to determine for themselves if the antivirals are safe. If a person believes the antivirals are safe, and their doctor beleievs the antivirals are safe, then what does it hurt to try them especially if the person is suffering with this disease and nothing else has worked for them? That's been my outlook all along, if it isn't going to hurt me, I'm going to try it no matter what the theories are.
Rick

 

Re: Virus Connection?


I think the bottom line is that there isn't a whole lot of science behind any of this"meniere's" stuff, the SERC, DYACIDE, SEDATIVES, ENDOLYMPHATIC SAC SURGERY, etc. The most reasonable explanations and science I've seen is the anti-viral path.
I'm not being critical of anyone, but I am probably letting off some steam due to the medical circus ride I've been on for the last 10 months.
I believe if I'd been offer the anti-viral meds last fall, and I did ask about a connection, I would not have missed 5 months of work.

Speaking of science or the lack thereof, I've been to one of the country's foremost meniere's expert. His name is all over the internet and the University of MN has named all thier ear clinics after him. He offered me nothing but a "pre-meniere's" and later an "a-typical meniere's" label. How can the scientific community even accept these labels? We would never be told we are pre-cancer or atypical diabetes?
For treatment options he offered a "stay away from the salt shaker" diet (that's all);dyacide, a sedative and the option to have a hole drilled in my head.

His pamplet on the surgery is filled with lots of statistics such as people experiencing more than 50% reduction in tinnitus and fullness. HOW IS SUCH A THING MEASURED? __90-95% REDUCTION IN DIZZINESS. again HOW IS SUCH A THING MEASURED?? However, the missing data is what percentage of people who have this surgery actually experience all of this? And, for how long?

I think the same can be said for the injections.
My point is that the acyclovir is probably less harmful than the sedatives, etc. and since many people are getting relief and there is some science behind it why not try it as a first response.

 

Re: Virus Connection?

I ALSO HAVE HAD COLD SORES AND HAD A TERRIBLE COLD WHEN MY MM SHOWED UP 2 YEARS AGO AND WAS NOT DIAGNOSED.NOT SURE IF IT HAS ANYTHING TO DO WITH IT BUT IS INTERESTING.

 

Re: Virus Connection?

If you have been DXed with the BEAST MM, give Acyclovir a try...

All you have to lose is your symptoms.

 

Re: Virus Connection?

Jewel, You said it all ... I was atypical MS for years before a Neurologist told me and showed me MRI's, etc that my "white matter" indicating atypical MS was really the result of the Zoster virus. No MS and besides he pointed out atypical means "not typical" and if it isn't typical then it isn't MS. Same with this Meniere's nonsense. Saying one has Meniere's is saying one has the symptoms of hydrops described by Dr. Meniere 1861. Saying atypical is saying the triad of symptoms described by Dr. Meniere was NOT found in this patient. Perhaps a duo of symptoms or maybe just one symptom, now with just bad tinnitus let's call it atypical Meniere's. Or the duo of hearing loss and tinnitus, let's call that atypical Meniere's or better yet call it pre-Meniere's or a wanna be Meniere's person. The sad thing is the medical community is in some cases scamming us instead of admitting they don't know and their ego want allow them to send us to a doctor that does, or confer with a doc that does. Example ... Fibromyalgia means sore muscles and tendons .... well er I knew that before I went in, but until another neurologist told me what it meant I thought I had a real diagnosis, not a trashbasket label, a failure to diagnose. It wasn't that the doc labeling me fibromyalgia didn't test me for everything and give me every inhuman test known, he was over looking the fact that zoster virus can cause nerve damage leaving one with symptoms similiar to MS. This doctor, I refuse to go to anymore, has on my final record from him: diagnosis ... fibromyalgia and Meniere's disease, cause unknown, even though a Neuro-otologist diagnosed me with hydrops from Zoster virus.

Now, do you folks understand where I come from? Personal experience and proof from medical text all confirmed by world famous doctors, plus photos of autospies of folks with same disorders as mine, Trigeminal Neuralgia, Hydrops, white matter, etc. It is a personal decision to take anti-viral ... I wish I would have had the choice before my nerve damage .... at least I stopped it before it killed me... You decide for yourself, but don't tell me it is a theory. When you can see vestibular virus on a MRI, it ain't theory folks... Sam

 

Re: Virus Connection?

Jewels, I would normally be the last person to defend doctors - God knows I've been critical in the past. But I feel that perhaps we need to be a little more understanding in this case. Many doctors are frustrated by not being able to help more and by not being able to offer more scientifically sound treatments for this disease. But it is also true of many other diseases, to wit: there are indeed pre-cancerous conditions and - this may surprise you - atypical diabetes, as well (http://www.rch.bham.ac.uk/PCH/Diabetes/Diabetes1.htm); Google returns 799 results.

Reduction is tinnitus can be measured fairly accurately (http://www.hearingresearch.org/tinnitus.htm); reduction in fullness may sound anecdotal but is probably based on studies and well documented reports.

Please understand: I am not trying to be antagonistic, not in the least I completely understand your frustration and am very frustrated myself at the many doctors I've seen who have not been able to offer anything substantial in the way of treatment. All I'm saying is that many of them are trying and the science has not yet caught up with this mysterious and perplexing disease.

And yes, we should all do what works; Rick is right on that score...who cares even if it's voodoo? If it makes YOUR life better, then it's right for you (as long as you don't make scientific claims that you can't back up - that can come dangerously close to scam-land)

George

 

Re: Virus Connection?

...I like that and it applies to so many things we hear on this board. You may become famous in the "halls of the Menieirians" for that statement.
....
...I also wanted to comment on something Sam said that is so very true. From time to time you will hear someonesay," I finally got a diagnoses of Meniere's!". I don't usually say anything because that does at least say there isn't any life threatning condition or tumor or anything like that. And that can be a big comfort to people. We're used to it but you got to admit, that first vertigo attack is pretty scary.
...But what I relaly want to say but never will except for this thread today is, "Your doctor just admitted he can't find anything wrong with you and has given up trying." And maybe it's good that the doctors don't actually say that as that could be a bit un-nerving. But I guess it's good that when they don't know what's wrong and we have a certain set of symptoms, at least by giving it a name, we'll find this place when we "google"
rick

 

Re: Virus Connection?

I can't offer any scientific info, but I can tell you from experience. I was diagnosed with chronic active epstein barr virus, firbromyalgia, chronic fatigue and I went on 100 mg l-lysine and a month later I was feeling great! Now, with the MM the first thing I started was the l-lysine therapy and it has helped. Maybe it is all in my mind, but if it works, it works. Blessings, twinkle

 

Re: Virus Connection?

Food for thought ....Rick

 

Bumping post ahead for the benefit of new people who PM me for Information regarding the Acyclovir regime...

 

Hey Larry. I agree. Maybe it should moved to the Data base so it doesn't get lost again?

 

I had a baaaaad cmv (herpes family) infection summer of 2006 that took months to get over. MM appeared June '07. I wonder, my family dr wonders, the NOG does not think so. But who knows. I was unusually old 58 to get the cmv, and I am unusually old 59 to get MM.