It seems that Acyclovir my do a lot more then help MM'ers

Stock up on Acyclovir, looks like prices are going up!

http://www.cbsnews.com/stories/2007/02/22/health/main2502543.shtml

 

Interesting. Acylovir is for viral, menieres is idiopathic.

 

Exactly.

 

Please read this study.

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

In case anyone has forgotten Acyclovir worked for me and several others from this board who also tried it.

 

I have been dx'd at the following places and keep in touch with my ENTS, I am bilateral. I am on list for new and upcoming FDA approved surgeries that is 110% success rate. I am a candidate and have refused the Baha. Not one of my ENT's will prescribe Acylvoir/Famvir or Valium, they prefer the meniett pump. I had my family practice doctor write me a prescription for Famvir and tried it for 4 months along with John of Ohio's regiment. NOTHING.


1980; Mayo Clinc, Rochester, MN
1997; Depaul University, Norfolk, VA
2000; Southwest Hopsital, Lawton, OK
2002; Universityof Virginia; Charlottesville, VA
2003: Georgia Ear Institute, Savannah, GA
2007; Tucson ENT, Tucson, AZ

 

My husband is one. Please don't say it doesn't work. It may not work for everyone (what does with this disease?), but it DOES work for some. And there are many Drs who believe it will work for everyone. They believe that MM is caused by a virus. I believe that, in my husband's case, that is correct.

God bless Larry, Johnny Detroit, and others who have never given up getting the word out on Acyclovir. That is why my husband feels as good as he does today.

Laura

 

But did it? You said that you still have intolerable tinnitus.

Also, you said you moved from Canada to the Caribbean. How do you know that the warmer climate, more relaxed lifestyle, etc. did not help your meniere's? After all, these have been shown to affect meniere's symptoms, moreso than the proof shown that acyclovir helps.

 

Yes that is correct, I moved to the Caribbean in 1989, 17 yrs. ago.
However I discovered this meniere's site only 4 or so years ago and at that time after reading about Acyclovir I decided to give it a try.

If your theory is correct then it took 13 years for the climate and more relaxed lifestyle to kick in.
I don't hide the fact that I have intolerable tinnitus most of the time to the point that I can't hear.

I may live in a place that many see as paradise, but I also have a very demanding and extremely high pressure job.

Be well

Larry

 

I'm sorry, but I don't buy it, if it were proven fact, ENT's would be handing it out like CANDY. I have seen at least 5 specialists in different states, not one has prescribed it.

 

Just started Acyclovir three days ago... I know it may be a long shot, but my ent. said why not try it.... Taking it is following the theory that MM is a viral infection, possible a herpes strain..... I will take it for 2 weeks, 200mg x5 daily if I notice any improvement I will go on a maintenance dosage.. I have had MM for so long I am skeptical that it will work, but have to keep trying... I feel like the disease has already done so much damage to my affected ear... Plus having the labyrinthectomy on top of that... As alot of you know I have tried many conventional things to no avail, so I am stepping out of the box a bit and trying something that some say works.... I will post after the 2 weeks and let you all know if I felt any difference... Sure would be a miracle if it worked!! Like I said though, I am skeptical...
Leanne

 

My doctor rolled his eyes when I suggested it. But I wish I would have tried it during my early MM days because I think my MM has a viral component.

 

Linda, in 2002 I had a family practice doctor write a script for Famvir, refused to write one for Acylvoir, and I took it along with John of Ohio's regiment. Nothing.

 

Well, although I have read this report in prior years, I clicked on the link anyway.

The first glaring error I see is the title: MENIERE'S IS CURABLE.

Ummmmm, no. It is not curable.

Even if Acyclovir reduces the number of times meniere's attacks, or the severity of the symptoms, the person is not cured of meniere's. This is very misleading. But for those who accuse me of being too harsh, let me remind you what a "cure" would be constituted of:

1. There would never be another vertigo attack, ever. There would be no transient daily dizziness, lightheadedness, brain-fog, swimmy sensations, balance problems,and nausea.

2. There would be a complete cessation of tinnitus.

3. There would be no ear pressure, fullness, etc.

4. There would be a cessation of hearing loss. In other words, any hearing loss that occurred prior to the injestion of acyclovir would not be recovered, but, there would be no further loss going forward.


That would be a CURE. And wouldn't that be amazing for all of us.

Until that day comes, I would strongly hesitate calling something a cure because it can truly mislead a lot of vulnerable people.

 

God I wish there was a cure!

 

Please take Caribbean's post for what it is meant. How wonderful for people that are living with HIV that something MIGHT work for them. Everyone's body is different and reacts differently to drugs, foods, weather, etc. For example, my father has suffered with bladder cancer. The treatment is to inject live TB cells into the bladder which is to destroy the cancer cells. And thankfully it has worked for him and several others I know. And NO - it doesn't work for everyone. But who would have thought TB cells!?!?! I sure am glad they did and I wish it did help everyone.

The article says "vertigo is curable" not "menieres is curable". Either way - they have yet to prove exactly what causes Meniere's. For SOME, it may be the herpes virus.

Toni and Nassman - my point is - what doesn't work for you, may lessen symptoms and issues for someone else. CARIBBEAN NEVER SAID IT WAS A CURE!!!! If it says acyclovir, valtrex or anti-viral in the thread line - don't open it to read further. Obviously it causes a reaction that doesn't warrant the spirit of the post.

Marci

 

If it was proven effective, the doctors would be handing it out like Candy.

It caused a reaction out of me because I am tired of people giving FALSE HOPE.

Topic: It seems that Acyclovir my do a lot more then help MM'ers

 

Toni --

Doctors never hand anything out like candy if they are doing their job. Most ear specialists are doing their job. They work hard to help their patients. If you would like to see a doctor that does prescrible the anti-virals to some of his patients, I will give you my doctors name. I'm sure he doesn't hand them out like candy. He however chooses not to prescribe the meniette. If I felt I needed to try that route, I would certainly go to another doctor, and might one day do so. But for now, his plan and care is working for me.

It isn't false hope - it does help SOME symptoms for SOME MM patients. Sadly not all.

The topic is about how acyclovir may be helping others. The story is about HIV. Maybe the work they are doing may help others with auto-immune issues. Including MS, lupus, etc. Does this give those people false hope? I trust not. We MUST be our own advocate. That means reading everything we can, talking to doctors, therapists, our families, eating right, etc. Sometimes these things work, other times they don't. And some days we just wake up feeling like cr@p and try to keep going.

Anyone who takes the time to read this forum knows that there is not one thing that ALL of us do to make each of us better. We are here because we care enough about ourselves and each other to share ideas, successes and failures.

Marci

 

We all wish there was a simple cure. A pill we could take that would correct those incorrect messages our ears are sending to our brains, but we can hope for a cure.

My Neurotologist tells me that a virus is not involved, but I have found from reading this site that these doctors do not agree on many things and do not talk to each other. They certainly do not speak with one voice.

I found out from doing research on viruses they tricky "Star Trek" type sicknesses. They can hide, they can mutate, they can be dormant and then active. I was disappointed when my Neurotologist did not consider it a possibility, because a virus sounds it can be a lot like Meneires with its erratic behavior.

 

Hi Carribean,

Thanks for that information on acyclovir and how it is helping some of the people in third world countries reduce the risk of acquiring HIV. HIV is a very nasty disease and any help will be appreciated by many folks.

I am glad you found some relief to your MM symptoms when you started using acyclovir.

Joe

 

How about we say that the antivirals help suppress certain symtoms in certain MMers?
None of the people who use it and have success are touting it as a cure all.
They're just saying that for some strange reason it helped them and why not give it
a shot....just like the lemon people and the NUCCA people and gluten-free people and
the hypoglicemia theory people. There's room for all theories and treatments on this forum,
that's why we're here, right? To share our experiences not to slam doors.