Acyclovir anti-viral treatment : For you newbie's

Thanks to all, very good information.. You are truly "Hero Member's" I will keep fighting the good fight and will try to keep you posted. --ben

 

With you're attitude Ben, you will surely conquer and slay the "BEAST"



Larry

 

Hi As I stated about a month ago, I put myself back on Famvir three times a day at 250 mgs. My doctor has given my 5 refills for Famvir. He doesn't feel it is a dangerous drug. I have been on it now for around 4 or 5 months. At 250mgs once a day the distortion returned. After being on it three times a day, my distortion is a little better. I also take 1000 mgs of l-lysine three times a day. I am not sure if any of this is helping since I have many bad days along the way. I don't mind taking the Famvir a little longer to see if it gets rid of the distortion as long as it does not cause any long term problem. At this point, I am just trusting my internist who seems well versed on drugs. Any others been on Famvir for a long period of time? Thanks Carole

 

I do not take it long term but when I was taking acyclovir I asked my family dr who prescribed it what long term side effects I needed to worry about and she looked it up on her hand held pdr and said she didn't see anything that concerned her. She said 'like most drugs' it is metabolized in the liver so I suppose if a person thought there was an exceptional load on the liver maybe that should be discussed. I asked the same question of the oto who prescribed famvir and she said aids patients take it for years at a time. As I type, I think I might not drink a lot or take tylenol much if I were taking antivirals but I don't do either anyway.

It is the distortion that it has helped me with the most too. What a blessing. While my distortion has never come close to being as bad as it was pre antivirals, I do get little bits of it now and then. From observation I surmise the little bits that still come and go are probably due to some permanent damage to some or other part of the ear (perhaps the eustachian tube) and it is aggravated by allergy and also some odd things seem to irritate it like foods with vinegar and oil in the air whenever I go into a kitchen where frying or roasting is taking place. Odd I know. I do have periods when my hearing will be not as good for a period of 6 weeks or two months. (Still never bad like originally). I have wondered if that might be the virus reawakening and been on the verge of requesting a new rx but just about the time I would be ready to call the dr it would get better for a long period. If only a dr could actually see deep down in the ear ... To sum it up, antivirals were a godsend to me in how they cleared up the distortion. I do think allergy treatment is also helping by taking the load off a damaged ear that will never be completely repaired.

 

I actually do have another question. Since I am throwing everything at this blasted thing. Does anyone have any suggestions on the Meniett or the P100? Would either one of these devices interefere with the progession of the other treatments I'm trying (i.e. acyclovir)? thanks, ben

 

I think what will be interfered with is knowing which thing helped. Meniere's is known for fluctuations in the first place so it takes a lot of focus to know what is helping and what is just a spontaneous improvement. You might want to do one for a few weeks before you try the next. If you do everything and get better you won't know what you want to continue and you won't learn anything about the etiology in your case. If you do antivirals and get improvement in a few weeks you can strongly suspect that a virus is involved and that is useful for you and your dr to know. Same for any treatment. If you search the board you will will find info on the meniette and vent tubes.

 

I haven't noticed a lot of people here raving about the Meniett device. However what I have noticed is several used ones up for sale here over the years...

 

Thanks guys! --ben

 

Ok, if possible, I would like to hear from all, Larry/ John/ June, and I guess anyone else that would like to chim in. I've been dealing with this "beast" since 2002. Went to all the great docs, dr. d in l.a. and dr. jackson in nashville (who performed left shunt surgery in 2004) I was getting attacks at first once a month, then once every few months and lately about once or twice a year. Now all of sudden (for me anyway) I hear about John's Treatment and Larry with the Acyclovir. I tried John's regimen last year, but really didn't stick to it, because the symptoms subsided within a couple of weeks. I tried the Acyclovir before, but didn't stick to it, b/c the symptoms again subsided after a week. Here's the kicker, I'm just assuming it's the normal progression of the diesease, it comes/ last for a couple of weeks and then leaves? Wait a year and it comes back, give a couple of weeks and it leaves again. That's how it works right? Or I'm I now being told that I can prevent these from coming back? What are the facts right now? Should I take mait. dose of acyclovir everyday for the rest of my life to prevent this from coming back (i will)? Because, I really don't want to go through what I just went through the past two weeks again. Sorry for the long post, but I'm certain you all understand, 7 years of this for me. Also, please don't sugar coat, for all I now, mine is not viral and It's just something that I deal with every year. Anyway, Thanks guys.. --ben

 

OK, the fact is no one has an absolute answer to your question. There are hints but no answers that explain everything and apply all the time. We can only tell you our experiences. IMO among those diagnosed with MM or hydrops, several different origins are represented of which virus is probably one. So if yours isn't viral probably you wouldn't get much relief. Then let's say it is, the question then might be what stage are you in. How much permanent damage has been done? THink of any virus. Knocking back the virus doesn't guarantee no permanent damage has been done. THat said, doesn't this flaring up and subsiding of MM kind of remind you of how a virus works? THink of chicken pox. Get over it at age 6. At age 60 it comes roaring back as shingles, rotten little bastard. Then there is the question of spreading from one ear to the other in time. Sounds sort of virus like.

Anyway to the question you asked, I can only say what has helped me and how my dr approaches it. When it seems to come back she rx's another dose. I don't take it all the time nor do I think I need to. But I don't think the fact that after you quit taking it the symptoms come back means it's not a virus or the antivirals aren't helping. Quite the contrary. Viruses are never killed, they live in the body forever. THey are either dormant or active but they are always there, always capable of being reawakened. So if it works for you, imo, you just know that the time will probably come when you need another treatment of it and you do it. I do suspect that people who have had the disorder for shorter periods of time probably have greater success with any treatment because less permanent damage has been done. But I think you will only know by the results you get as an individual. My dr does say if you get success, take it for a full 3 months before going off it. Good luck.

 

Very good question Ben... Johnny Detroit who drops by every now and then swears by the maintenance dosage and if I recall correctly says he will continue 400mg every day.

I prefer to start the Acyclovir treatment of 400mg 5 times daily (as per the original study) when I come out of remission about once a year now, or attack it head on before I stat spinning when I have a herpes flair up.

Others are now doing what John suggests and take lysine on a daily basis to keep the "BEAST" at bay.

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

 

Amazing.. Thanks Larry, thank you June..

 

Dear All, I'm checking in to say a heartfelt thank you to the medical study publication link posted by johnnydetroit on this thread. The paper is: "Meniere's Disease is a Viral Neuropathy" by Richard R. Gacek Department of Otolaryngology – Head and Neck Surgery, University of Massachusetts Medical School, Worcester, Mass.

http://content.karger.com/produktedb/produkte.asp?doi=189783

I dropped off a copy to my neurologist last Friday, and he prescribed acyclovir 800mgs 3x's a day for me as a result. I started Monday (funny, I had a vertigo attack later in the day Friday!). My neurologist did caution me that taking it while the infection is "active" is what works- much like a herpes cold sore, or shingles type of outbreak. The viruses that cause these are neurotropic, that is they take up residence in the nerve cells and lay dormant until they are activated and can overcome the immune system and cause trouble. Unfortunately about 10% of patients will not respond to this treatment due to resistant strains of HSV (herpes simplex virus). The treatment cannot of course reverse damage that is not reversible, but it can prevent further damage. The treatment is meant as a control of the infection, and makes the case that the virus is the root cause of Meniere's and VN.

I know that similar details have been posted by members on this forum about the viral cause, but I mean to point out that this paper includes all of this information, therefore provided me with credible documentation to give to my doctor, and something he responded to. This paper should be given the highest visibility possible!!

thanks again johnnydetroit! good find!

tcWay

 

Thats great, make sure that you take it for a minimum of two weeks...

 

Hi tcWay, I saw Dr. Gacek a couple of weeks ago. I drove from NJ to Boston just to see him. I have been taking famvir and found good improvement and I am currently on a maintenance dosage. He suggested that I continue this indefinitely - the drug is considered safe assuming one's kidneys are functioning well. Apparently many AIDS patients have been taking famvir for a long time with no long term side effects. He says that advancing age brings down immune function and so previously dormant viruses get activated - he believes that is why MM generally strikes people in their 30s and beyond. He said if I like I could stop the maintenance dosage after about a year of taking it and see what happens.

Interestingly just like you I dropped a copy of his paper at my regular neurotologist's office and he didn't buy it much - he said that the title of the paper is rather bold and that the study was not double blind. He may have a point but I didn't want to wait for a long term large controlled study before I tried the antiviral.

 

Hey guy's, I've been taking acylovir(sp) for two weeks now 3x a day 800mg.. My MM returned about 3wks ago. I don't have the severe vertigo like I've had in the past, however, I do have quite a bit of unsteadiness? Does this mean the acylovir is not benefiting me? Should I continue this dosage longer? Any advice would certainly be appreciated. Has anyone else experienced this? Thanks, ben

 

According to Dr Derebery (who rx's famvir), if ANY improvement is seen, continue for 3 months. With the famvir, she rx's at one rate for the first 10 days and a step down after that for the remainder of the 3 month period.

In my opinion if you don't have the severe vertigo, you are doing better and probably not for no reason. Would you rather be in the state you are now in or the one you were before? I mean that as a serious question because I don't know if you had the unsteadiness before and how debilitating that is.

In my case with my hearing issues, I got a big improvement from acyclovir but it didn't take me the whole way. I had seasonal problems resulting from allergies. Allergy treatment helped me with more improvement. I am not 'normal' in my hearing but my quality of life is soooo much better I will take this any day over my pre acyclovir state. Is that how you feel?

 

Ben, several people have reported feeling worse while taking Acyclovir before they feel better...
Fact is we are all different in the way we respond.

The unsteadiness you're feeling could be a reaction to the drug. Since you're not experiencing the severe vertigo like you've had in the past tells me that it must be working.

Definitely keep it up!

Larry

 

To answer June's question, absolutley this is better than experiencing the vertigo that puts you on your back. However, the unsteadiness is not something I typically experience and is not pleasant. But yes, it's better than the vertigo. Larry, I do think it's working.. I just wasn't sure if I should keep doing the 800mg 3x a day or now just go onto the 800mg a day for the next month? Do you have a suggestion? Thanks, ben

 

Really that is a good question that hasn't been explored a lot I don't think. It might be worth a specific thread or poll to antiviral users. There are at least half a dozen people who post here who have gotten signficant results from antivirals and dealt with it over a period of time.

My hearing issues got better gradually. On the third day they were worse, there was a new and different distortion that scared me and I almost quit the acyclovir but I figured I would give it one more day and glad I did because the new bad part went away. I am theorizing that your new unsteadiness is your inner ear healing which involves change and therefore some symptoms. I don't know about acyclovir dosage for a long term and can't remember what I did. I did whatever Larry said. I do believe I kept it up for about a month. I later took famvir.

One thing, while you are doing this, try to get lots of sleep and otherwise take care of your body to give it the best chance. Think mono. That's a herpes virus infecting internal organs - sometimes numerous ones.
That virus and the damage it causes can go on for months. Usually the doctors recommend lots of rest. I know I am repeating myself but I think patients and doctors alike tend to expect the meds to take care of everything and forget the body needs tlc to recover. Glad you are getting some relief.