meniere's caused by a virus-please read

Hello all, I just retuned from my follow up appt with my new neurotologist, who is fantastic. When I first saw him in june, I brought with me carribbeans acyclovir study and asked if I could try an anti viral. My doctor willingly obliged, and put me on famvir, along with my diet changes, diuretic, and xanax. Today at my follow up, he informed me that just in the past month, they have determined that it is most likely a virus that causes mm. He said, "we've been treating it for 50 years, not certain of what causes this or why, and now, just in the past month, there is almost irrefutable evidence that a virus is the primary cause of this disorder." My doctor studied in new york, worked at usc medical center. Then at house ear clinic for a time. He has excellent credentials, and has worked in this field for almost 40 years. I'm well aware that this disorder is a mystery, and so complicated, but based on what my dr. Said today, perhaps everyone should try an antiviral, just in case. Also, since starting famvir, I've had no attacks. No ear pressure. Virtually no tinnitus. Could be a period of remission, could be from the diuretic, but definitely not ruling out that famvir and joh regime are having a positive effect. Be well, skye

 

Thanks for sharing what the doctor said - very interesting. Something I'll definitely speak to my doc about as well. Great to hear that you're finding relief!

 

there is almost irrefutable evidence that a virus is the primary cause of this disorder

almost?

I to would like to see some documentation into this research. I would definitely make an appointment just to discuss this with my ENT.

 

hope it does wonders for you Skye.

here is one post on famvir
http://www.menieres.org/forum/index.php/topic,17837.0.html

you can search for others and also for acyclovir.

 

That's exciting news.

Thanks for posting.

Joe

 

Thanks all. I'm sure I'm not quoting him to the tee, as it can be difficult to remember every detail from my appts word for word, though I'm trying...but my mother and I were both surprised to hear this news. He did not make mention of it at all at my last appt just over a month ago, but today he was almost giddy with excitement, explaining that some great information has come about just in the past month. He expects more info on these findings to be made public soon. I just wanted to pass this along. Hope this helps. Just praying we can all get closer to finding relief.

 

I believe that is part of the JOH regimen The L-Lysine is to stop or slow herpes virus according to John of Ohio's info

 

Well my Doc might be better than i thought. Not nicer just better.

 

Acyclovir anti-viral study...

http://www.bekkoame.ne.jp/~ms-7/english1.htm

 

Did he give you any idea where the evidence came from in the last month?

How is the famvir working for you?

 

The role of embedded herpes virus infections as a root cause of most (but certainly not all) Meniere's cases has had evidence for some time, including the Japanese study Caribbean posted above. Italian researchers have also implicated herpes viruses.

And the many cases of relief following ample and adequate administration of the various antiherpetic drugs (famver, acyclovir, etc.) should be proof enough.

And finally, only a herpes virus infection tends to express the peculiar traits of this disease, including (a) being initially unilateral (can't then be a circulating pathogen), (b) comes and goes with periods of activity and remission (a trait of most herpes species), and (c) the ability of antiherpetics to frequently knock out Meniere's symptoms.

I have frequently asked any and all to propose any other plausible cause that could result in all of the peculiar symptoms of Meniere's. Except for injury to the inner ear, there is simply no other explanation for the disease's cause.

It appears that more in the medical community are confronting this difficulty and are begining to point the etiologic finger at the real culprit, herpes virus infections in the affected Meniere's ear.

And yes, a course (up to six months) of over the counter lysine, at adequate dosages, taken without food, can stop herpes virus replication.

I've described this in some detail here:

http://www.menieresresources.org/Resources/HomePage?action=download&upname=ANewApproachtoMenieresDisease-TheJohnofOhioRegimen.pdf

Of course, there are those who will dismiss the role of herpes viruses until a major article or two appears in a major medcial journal. supporting the contention with a giant clinical study. Since that isn't going to happen, certain types will have to conveniently retreat to the position of informed ignorance, "The disease is idiopathic."

But for us who have accepted the viral cause of Meniere's and have gotten relief from lysine or antiherpetic drugs, we will just wink and nod.

--John of Ohio

 

Great news Skye! I was thinking the same thing after i first got relief from Acyclovir...'maybe it's just a momentary remission'....but the relief just went on, and on, and on, for years....it really did work!

Congrats

 

Definitely try it. It may help a lot of people but it's not a panacea.
At least it looks like they have found at least one cause of MM.
If your really feeling down be glad you don't have Ramsey Hunt syndrome.

It didn't help me with vertigo, hearing loss, tinnitus or fullness
but cheers to all that it does help. Give it a whirl and JOH as well.
Good Luck!

 

I'm of the camp that believes the herpes virus is a cause for many of those suffering from meniere's. Both of my parents and a brother have had shingles. As a kid I had the chicken pox and I'll bet that nasty virus is just hanging around in my system. Thank goodness for this website since here is where I learned about this theory as well as acyclovir and JOH regimen. I'm convinced that taking acyclovir and JOH regimen is what's made the difference for me. Acyclovir is a benign drug and with a doctor's ok, it's certainly worth a try. Not all may find relief as there are so many variations of inner ear disorders described on this site, but I'll bet there are many who just might find it helps. I'm glad I talked to my doctor and he was most willing to give it a try. My best to all.
Chinook

 

If only my mind weren't so foggy at my appointments...I really need to start writing things down. I'm going to do my best to remember here, and not slaughter his words. he mentioned something to the affect that now, as more and more people are accurately diagnosed with mm, versus in the past, they are able to gain so much more info from autopsies and various forms of studies. He said that over the last month, they (and I didn't ask if "they" were local, national or international doctors) have been able to go in and see that all of the mm sufferers they observed had an active virus in their inner ear. Forgive me for not getting more details...I was feeling quite overwhelmed, as I usually do at my appointments. I don't know if this is the answer for everyone on here, but I've never had a specialist disclose this type of info to me before, with such confidence. Hopefully "they" are on the right path to helping us. I am actually going to email him tomorrow to see if I can get more specific info on this, and I will let you all know. I hope we all find our answer and well being very soon! And if you're not able to aquire an anti viral, please do as john of ohio says and try the l lysine. Its worth a shot, and has helped so many on here. Best, skye

 

antivirals did nothing for me over many months, but it helps some folks.

 

Ditto for me too, I have taken JOH regime for 2 years now, although I feel better in other ways, the regime, nor L-Lysine which I still take and helps me with other herpes issues, nor Valtrex has done anything for my Meniere's. Some of use unfortunately have other issues. Even though my doctor let me try Acyclovir, he had told me if Herpes was so prominent in Meniere's patients, the simple lo-salt - diuretic treatment that is so effective for 80% of his patients would have no affect if those 80% patients were herpes based. So I guess that leaves the rest of us 20% that need to find the best treatment, which I do believe can be John's regime along with others.

 

Labyrinthitis is caused by a virus, maybe some people have that and are wrongly diagnosed with menieres.

Same symptoms.

 

From what I understand the antivirals have been more effective in treating hearing distortion and fluctuation which would be more the cochlea than the labyrinth. Since there is no definitive test for Meniere's I don't know how it can be distinguished from any other disorder with the same symptoms. I wonder if a virus is frequently the (or one of the) root causes of the disorder but perhaps antivirals are only effective if given early enough that permanent damage is not already done. I got striking improvement in my hearing but it only went so far. I think some permanent damage had been done.