Just give me a figure. Chances of Antivirals working.

You will have to remind me how far in you are. My journey has been rough. Which leads me to believe that the AVs are working. When I started them on 22 NOV I was in a bad way. Huge stress from work, mega anxiety, deafening tinnitus, constantly on the edge, attacks every couple weeks.

Then I started taking them. I got worse, quick. Had my most intense attack ever within the first week. Since then I haven't had another vomiting episode, but I have had two short (10min) vertigo episodes with nystagmus. Before AVs I had never had these types of attacks. My tinnitus is different. Still there, but different. My anxiety is less. I now have constant mild dizziness, I think you mentioned PPPV. It's not impeding me much, but is certainly annoying and usually not ignorable.

So I figure I'm in at stage where the virus has been beat down and the reconstruction phase is starting. The transitional phase if you will. I've had enough attacks that I can only imagine the level of damage to my ear, most of which might not be repairable. As long as I can get stable, I can deal with the hearing loss, tinnitus, etc. But I feel you on the dizziness, I really do.

 

Gacek and other hearing centers are consistently reporting 90% success rate. But keep in mind that not everyone has a viral cause. If you have MAV, then AVs won't do anything. But I'd go 3 months at max dose before giving up on them. I hope you find relief soon.

 

How long have you been taking them? Have you had any change since you started t aking them?

Have you gotten better, worse or same since surgery?

 

In my opinion, after having taken anti virals for 2 years at the highest dose, I would agree with the 90% success rate Gacek references, but only for those that anti virals can help. In reality, we do not know if that percentage that it can help is really only 5% of total mm suffers world wide. Again, only my opinion, but if we used that lense, then anti virals may only be effective, or somewhat effective in a very small percentage of mm suffering symptoms. That can be due to having so many different causes for this disease.

I think it is probably not very likely that there will ever be a one size fits all solution, due to the many different causes of the symptoms. The most prescribed medication in the world for mm is Serc, and the effectiveness is all over the map, depending on the studies released.

I would suggest the most effective solution for relief is remission, meaning having no external control over the effects of mm symptoms. As I write this it is very frustrating, still healing from my broken neck due to a drop attack. As I look back at all the things I have tried, and believe me, I have tried a lot ( I track everything I have done /taken) and the most logical rationale, for me at least, is simple remission.

Having said all that, I am feeling relatively well lately from taking new supplements. In 2017 I had 91 true vertigo attacks. Since taking these supplements I have had none. Once I have hit 2 months with no symptoms I will report on that.

 

While i see your logic, that hypothesis does not fit the data. Gacek didn't weed out the viral patients when we scripted acyclovir in his studies. He gave it to all the "tough cases" who didn't respond to anything else. He got a 90% success rate. The same is being reported at a wide range of hearing centers. Also, keep in mind that he only scripted the max dose for 3 weeks, while many of us have needed it much longer, so his failure rate was higher than it would be if he put patients on the max dose for 3 months.

My guess is that ~90% of the cases are viral related, and the other 10% are something else that doesn't respond to AVs.

I'm glad to hear that the supplements are working for you!

 

Pupper...the only thing that matters is you.

MM should be called “cancer of the ear”. Treat it for a few months to try to achieve “complete” remission from “ALL” symptoms using all possible treatments and then just take it out to get on with a normal life.

 

for me since taking AV for a year now, still had vertigo but much less frequency. however, alot of days with balance issues and i feel that my hearing is getting worse at least on the speech recognition.

i think my MM is caused by virus since i was tested positive for hsv 1

for those taking AV, how is your hearing?

 

L-lysine has worked well for me. Maximum dose is 4500 mg per day on an empty stomach. Do not stop taking it! If you stop the symptoms will come back. I was feeling better so I did not take it like I should have. The virus returned and even worse than before. So I’m back on 4500 mg each day.

Hope this helps.

 

I believe anti virals help some people, in fact for some eliminating all mm symptoms. However, I am not believer they work for 90% of cases, rather 90% of people who have mm caused by a viral issue.

If all members of this board currently suffering from mm symptoms took the max dose, of the correct brand, of anti virals for 6 months, 90% would experience relief of some form? Sorry, I wish it were that easy. I follow many forums and Facebook pages, and the success rate is significantly lower, albeit subjective. But of course the success cases for anti virals on forums are subjective as well.

I think any person suffering mm should try anti virals, as I am a supporter that they can help some people. So can Serc, so can Nucca, etc, etc, for some people.

 

Tested hearing or for viruses? There is no test for viruses that applies.

 

Yes, it is. Try emailing him. He's very responsive.

 

No, they would not, because this is not a random sample of the population. This is a group of the really tough cases. Also, MANY of the people on this forum were incorrectly diagnosed with MM. AVs will do nothing for MAV, SCD, PLF, etc.

If i knew you meant "this forum only", then my answer would be somewhere around 25-30%.

 

Max dose is 1g tid. Or 1000mg three times a day. I've been on that for almost 7 weeks.

FWIW, I had a really good day today. Got up and didn't feel like getting right back in bed after hitting the John. The wife and kids are out of town so I could have called out of work and taken a ME day, but I didn't. Went to work and survived. Took my pills, watched my diet and things felt almost normal. Who knows, tomorrow I might wake up spinning. But I'm now pretty convinced the AVs are affecting me in a positive way.

 

I think Bulldogs nailed it with this quote.

Pupper - I just started full dose names brand (not generic) antivirals 3 weeks ago. I am giving it 4-6 months. There are no side effects. Don't worry about 3 pills per day. Hell man...you had brain surgery already...You have nothing to lose.

I too also had surgery (shunt) on my ear that did not work...It made things worse. I am very hopeful the AV treatment works. If not...I am on board with Bulldogs. I have dealt with this thing for 10 years and I have two kids in diapers...haha. I have no issue moving on with one ear.

I also agree with Scott Tom...these are the hard cases. So the percentage is probably lower on this site. I've looked at Dr. Gacek's research closely. Many of his subjects were in the first 2/3 years of MM...I am 10 years in...its a different ballgame at that point.

Good luck with AV's. Go full blast!! Hope it works out for you!!