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

Hello everyone,

Geez, it's been so long since i've been to this site that i had to re-register! Anyways, i saw this topic and figured i'd fill you guys in on how i've been doing. It's still all good news with the Acyclovir. I see some people here feel Acyclovir treatment is hogwash, or that we really don't have Menieres to begin with. Well, perhaps they're right, i guess it technically isn't menieres if you figure out what's causing your symptoms. Actually i've been officially diagnosed with Menieres by my current doc and Idiopathic Endolymphatic Hydrops from a previous doc. Whatever the heck they want to officially call it doesn't really matter. The symptoms i get are identical to what "menieres" people get anyway so whatever.
Anyways, i'm still basically "cured" since i started acyclovir nearly 3 years ago and don't even take the maintenance dose anymore. But, i must keep the bottle of Acyclovir with me at all times. The pattern i've been experiencing for the past couple years is this. About every 6 months(almost like clockwork) i will suddenly, within hours, start to lose hearing in BOTH ears. That real tinny souding hearing develops, and the faint seashell roaring gets louder and louder. If i let it go for the better part of the day, the fullness feeling begins to gets bad and i know it's time to start the Acyclovir. I'll then take 800mg and see how it helps. I usually notice the hearing and fullness improving in about 12 hours after taking it. I then take 400mg every 12 hours until all symptoms are gone. Lately i've only needed to take it for about 3 days to get all symptoms to go back into remission. And when i say remission, i mean all symptoms disappear totally, even the tinnitus. But i still get some days where my ears make a real faint buzzing noise that i can hear if the room is quiet, usually when weather systems move through. It's doing it today actually! I do get a bout of BPPV about once a year too. When no other ear symptoms seem apparent...just kinda out of the blue i'll get those quick spins when lying my head back on my pillow. But after a few weeks it just resolves on its own. So i guess you could call it kind of a cure. Not a real cure of course, because if i didn't have my bottle of pills with me when my ears start roaring, within a day or so, i would be so screwed! But in my own mind, after dealing with the unpredictability and severity of symptoms and the fear of never knowing when an attack might happen, this Acyclovir thing is a miracle. It gives me control over the disease...whatever it's called...rather than the disease controlling me. Peace of mind too knowing exactly whats causing it, and exactly what i need to do to stop it. Sure every six months i'll have a few days relapse...but that is nothing compared to everyday! I'll take it....call it a cure and be happy as hell!

I know a simple controllable virus is probably not the cause of most of you people's suffering, but for a few of you...probably some of you that never would suspect it, it just may be the cause. That's why i think these posts by Larry, Laura, Rick and even myself are worth reading and have real value to someone out there that will too be "cured" after trying the Acyclovir. Even if it's just one person in a million.

p.s. It was an encouraging post on this board, just like this one, that got me to book an appointment with my current doc and give the acyclovir a shot. I am forever grateful for that post and great person that shared her positive results. It got me excited and gave me hope...and believe me i was totally prepared for Acyclovir NOT to work. But god damn it....it WORKED!!

 

Hi Toni

Can I ask what you mean by this?? genuinely interested

 

It seems there is no one thing that is certain to be effective for everyone, as there are as many variations in relief as there are individual experiences with menieres - what trips it, what may be causing it, and of course, what helps each one of us.

There are very few black and white absolutes, and I find oftentimes those that claim them, really know very little about menieres.  Who really does?  We should respect each other's experiences and be grateful we all share what we've been through, what we've done to try to improve our situation, all the variables, because it's by doing that we just may be helping someone else.

Just because someone else's experience isn't the same as mine gives me no reason or right to condemn their thoughts, as long as that person doesn't speak as if their experience is the only way to go either. We all have brains and we can choose to do our own research and take someone's advice or not. There's no reason to shoot someone down just because we won't follow their path or even believe them.  If someone has found something that has worked for them, then all the power to them and best wishes.

 

Amen........................Welcome home Johnnydetroit, its been to long, we missed you here at the spinners club.
The reason you had to register was the old board crashed and we lost all the old posts and data.
I'm so happy to hear you are doing so well with "Acyclovir". I had no doubt in my mind otherwise.
I truly enjoyed your post Johnny, it got me thinking that I should be back on Acyclovir myself to see if it tones down my tinnitus, could it really be that simple?
I have been giving myself B compound injections everyday for a week now and all I have to show for the effort is a sore a$$.

PS: Johnny please drop in once and a while, there are still one or two people that I would like to win over with Acyclovir.
Sometimes I just feel like a snake oil salesmen when I get beat up on here, but then the next day or two I read a post or get a PM from someone asking for information about Acyclovir.

Peace/ Larry

 

johnny (and others who have had success with acyclovir):

when you FIRST started taking acyclovir to see if it would help, how much did you take and how long was it before you noticed an improvement in your symptoms?

i'm wondering if i tried it, how long i should i try it for.

 

I don't think I will ever forget the dosage that worked for me.

Acyclovir, 400mg. 5 times daily or 2000mg. total.
Take for 14 days.
If the drug is going to work in your case you should feel an improvement in just a few days.
You must take it for the two weeks to be sure you gave it a proper chance to work.

Good Luck, I pray it works for you!

Larry

 

I pm'd you.

If there was cure, it would be known. There is no known cure for menieres. I have gone into remissions for years at a time and forgot I even had menieres. I am done with this subject.

 

Burd; Excellent post. Thank you.

 

Johnny - welcome back. I believe it was your post over two years ago that caused me to ask my doc about the anti-virals. Which I am still on. Thank you!

Larry - your continued information and support helps. Thanks to you and soccermom for keeping the anti-virals as a possiblity for some.

Burd-I thank you for these lines -- "There's no reason to shoot someone down just because we won't follow their path or even believe them. If someone has found something that has worked for them, then all the power to them and best wishes." It's hard enough to live with this without being trashed further by someone when coming to a forum for support and ideas.

Aria-I take 500mg of valtrex once a day for a maintenance dose. When I started, I took 500mg three times a day for a week then went to 500mg twice a day. I was on that dose for almost two years. I just went down to the once a day and had to pop it back up to twice a day when the symptoms kicked up again. FYI - I don't get cold sores and I don't have herpes. I did have chicken pox as a child.

In the spirit of the original post - after seing many deal with HIV and AIDS - I hope the antivirals help those patients and maybe the price will go down!

Marci

 

Johnny my friend!!!! It's so good to hear from you again. I too had no doubt that you would still be doing so well.

I feel badly for Larry (and myself sometimes) for the beating he takes in touting his success with Acyclovir. It is too bad that some here just won't believe that it is even a possibility that it COULD WORK FOR SOME. Perhaps it's that negative attitude that keeps them from finding just what might work for them. Too bad for them.

Good luck to everyone in finding something that DOES work for you. And if you find it, I hope you will scream from the rooftops and all over this board. Even if someone says it doesn't work. You could be the help to someone else that didn't have an answer before.

God Bless.

Laura

 

http://www.american-hearing.org/disorders/menieres/menieres.html#treated

Agents that are Controversial
Serc (beta-histine)
Histamine injections
Homeopathic treatments, such as VertigoHeel
Antiviral therapy (such as Acyclovir)
intratympanic dexamethasone

http://www.nidcd.nih.gov/health/balance/thebasics_menieres.asp

http://www.tbregistry.org/body/about.htm#SERVICES%20AND%20FUNCTIONS

 

Toni,

Please let this go.

Serc helps many - even though it is controversial, so does vertigo heel, etc. None of those pages say anything about the meniette, but you choose to use it - and nobody is telling you not to.

Marci

 

Please take a look at John of Ohio's Meniere's Regimen.

Note what he Say's about Acyclovir.

Also note Viral Inflammation.

I believe this mans advice is highly respected on Menieres.org (I stand to be corrected)

I applaud John for his unselfish work over the years!

http://www.menieresfoundation.org/johnsregimen.htm

Larry

 

Aids/HIV. is a "Death Sentence" here where I live, the people can hardly afford a pair of shoes let alone an expensive aids cocktail.

Just maybe now some people here will have a better chance of staying alive, with the help of "Acyclovir" (For those poor souls that can't get on Vaccine program.)

PS: The American drug company MERCK, has just announced on Friday that it will be testing an all new "AIDS VACCIENE" here over the next four years and selected persons will receive the Vaccine at no charge.

This study is also very controversial, just tell the people lined up for the Vaccine that!

Larry

 

Study here if interested?

http://www.news-medical.net/?id=22102

http://www.cbsnews.com/stories/2005/01/20/health/main668265.shtml

If this Vaccine works, just think of the possibilities?

Larry

 

My wife (she's japanese) shoved this article (Dr. Shichinohe) under my face a few years ago. The research he has done in Japan is some what famous and only a portion is available in english. My aversion to Japanese medicine prevented me from fully embracing this research. I almost tried this a few years ago, but the idea of taking 2000 mg of anything seemed extreme. I am a functioning Meniett user with occasional days of distress. What side effects have you guys seen with this? Any scary stories or concerns? I do believe their is a viral link since there have been too many coincidences around when I get this stuff real bad. I can sort of trace the onset of this disease to a time when I could have been exposed to some suspect viruses, lets say.

 

EE

I have been on Valtrex for over two years now - anywhere from 500mg a day to 1500mg a day with no side effects. I agree with you about thinking it could be viral based for some.

Glad the meniette is working for you.

Wishing you well!

Marci

 

eedad1 welcome to the board,
I started the regime with the 400mg. 5 times a day 14 days with no side affects of any kind. I'm back on with Acyclovir trying to lessen the tinnitus that has been getting worse, I'm taking two 800mg. Acyclovir pills daily with no side effects.
Today my tinnitus is only in one ear, pressure gone and noise level down some.

Larry

 

hi all,

i read a lot of what is above about cures what is a cure and what is not a cure is a debate.
lets take cancer, i think you all know someone who has some form of cancer.

what works for one does not work for another, this is no reason not to try it.

the trick seems to be try one thing at a time or you will never know what works.

I am in my 10th Year of MM and still looking for my solution, I will find it, this drug is next on my List if NUCCA does not work after about 6-8 months.

Darragh.