Antiviral experts needed

You can search "antivirals" here and see loads and loads of past discussions. Scott is gone but his and other's guidance remains in past threads, if you simply have the will to look.

 

I’ve been on ‘em about as long as you have. I had a bump in the road when my brand got changed but things have been tolerable again after getting that all fixed up.

My residual symptoms are similar to yours as well. My hearing still sucks, but I frankly don’t care or expect it to come back since I feel like the damage is significant. No massisve vertigo attacks since November but I still will get a surprise small one that can last seconds or minutes. There’s a storm on the way tomorrow and I can sure tell. Tinnitus is going wild and there’s a bit more pressure but that’s about it.

I plan to stay on the tid dose for another month and then I’ll try bid. Since you are on JOH it’ll probably be safe to back off at six months. Most say three months is enough but as long as your liver function is holding up you should be fine either way. Good luck!

 

Do you/have you in the past had any liver or kidney issues? That would be a red flag.

Some people stay on antivirals for other reasons for years when they have compromised immune systems.

I always want to get off any drug as soon as i can just because they are all rat poison. But as rat poisons go, these are considered among the safer drugs, way safer for most than steroids for instance.

In my case, i took them for around six months total with a gap. At that time my tinnitus was essentially(mostly, not perfectly) gone, the distortion was essentially gone, i was not seeing any hints of impending vertigo, hypercusis was gone. But i did have better and worse days. But life was way way better than pre antiviral. From then in i continued with allergy shots and my hearing got gradually better and better. I did have setbacks when i took antivirals or prednisone for a few weeks. I do not honestly know if that helped the setbacks or if i just sort of healed on my own from them.

I know for people experiencing vertigo, this middle ground might not be acceptable. I am not sure the doctors yet have all the answers. Sadly there is not test to tell you.

 

I've been on valacyclovir (Camber) since January 25th. Dropped down to 2/day after three weeks and two weeks into that dosage, slight vertigo, fullness and tinnitus started coming back so went back to 3/day on March 6th. As of today, no vertigo or balance issues, but little progress on fullness and associated tinnitus. Based on my current symptoms, I would say that I only have cochlear hydrops right now. What has been frustrating is that I had a week of no fullness back in February when I first started on two pills/day, and I have had days in March where the fullness has disappeared or been greatly reduced only to come back the next day. I believe I'm slowly getting better but it's hard being patient sometimes.

 

I was on max dose (3000mg per day of generic valacylovir) for four months, dropped to 2000mg per day for two months then to 1000mg per day. After a few weeks on 1000mg I started to feel "off" so I increased back to 2000mg and have been on that for the past two months. I cannot imagine dropping below the 2000mg per day again. I'm also on the JOH regimen.

I have had no vertigo/disequilibrium and no fullness. The tinnitus is still with me but not nearly as loud as it had been. Believe it or not my hearing is greatly improved. That, to me, is the proof of the antiviral efficacy. My Otolaryngologist told me that burn-out is almost always accompanied with significant hearing loss. There simply is no explanation for greatly improved hearing other than the antivirals.

My blood work has been fine to date but I will continue to monitor every a couple times a year.

All the Best.

 

At risk of sounding like a phony, I am not sure about the actual dB improvement of my hearing. Across 2016, I had five hearing tests performed and the results were all over the place. I believe the results were primarily dependent on the amount of tinnitus I happened to be experiencing at the time of the test.

My proof of hearing improvement is simply found in my ear buds. I stopped hearing anything through my ear buds on the bad ear side. Of course I tried switching the buds between ears and then another pair of buds but no joy. That's when I started getting all the hearing tests. Now, when I put on my ear buds I can hear at lower volumes and with so much more clarity. The difference between my good and bad ears is almost negligible at this point when a year ago it was night and day.

I hope that I am not providing anyone on this site false hope. My situation could be unique to me. I believe my condition/disease is caused by a virus. I also believe that people suffer the same symptoms but it could very well be a completely different cause. I can only attest that my life is worth living now when a couple of years ago it was not and the only change has been the antivirals.

Best of Luck.

 

Mac, I'm not sure I caught things early. My first severe vertigo attack came in 1990. I didn't find this site and the JOH regimen until end of 2008. There were a lot of attacks during that 18 year period before I heard of any possible connection to the herpes virus.

Last year when my life was miserable due to constant disequillibrium (not vertigo any longer but ever-present nauseating sea sickness) I asked my Oto if the 27 years of attacks had damaged my inner ear to the point that the only option was to surgically disengage the ear. He said surgery wouldn't help me. He's a surgeon so my heart sank at the time thinking my cure-all option wasn't available. He said that the brain was unable to find center balance and that I could only hope for disease "burnout" and vestibular therapy to improve the brain's ability to find balance.

Well, 10 months later I have not had any disequilibrium in the past 9 months. Since I don't believe in coincidence or divine intervention (God has bigger things to worry about than my bad right ear), I have to credit the anti-virals. My hearing may have been fluctuating, but it was always substantially worse than my good ear. Not any longer. But, by far, the absence of constant disequillibrium is incredible.

The purpose of this ramble is to say that in my experience anything is possible with this disease.

All the Best!

 

I started taking Valacyclovir 1g x 3 daily (So 1000 mg 3 times daily) on February 2017. I went down to 1g x 2 daily after about 3 months or so. Finally I went down to 1g x 1 daily. I stayed on the 1g x 1 daily but after a few weeks I felt like the symptoms were coming back. I increased to 1g x 2 daily and I've stayed there since.
I get a blood test every 4 months and the results are always fine.
The hearing in my bad ear is just a little bit bellow normal and it has stayed there for over a year.
I feel that my hearing is bad only when I have bad tinnitus.
I do experience a few days of mild dizziness every months but they go away withing 2-3 days. It's very mild and it doesn't prevent me from doing anything but I know I'm more dizzy than normal.
BTW I haven't had a single COLD of Flu since I started with the antivirals. I teach 6th grade so lots of germssssssss around me.
Karina

 

I always felt ‘especially well’ when i was taking them. It was hard to describe. Made me wonder how much we are assaulted by various viruses every day.

 

yes, 500mg three times a day for Famvir

 

Ever tried acyclovir? People talk like it is plain jane but it worked for me and i am sure i was taking a generic. Just Makr sure you are spreading it out evenly over the whole day. Preferably in 5 doses. I think it is pretty cheap and available but it worked for me.

 

Famvir is very cheap to buy. I buy 60 for $60 with no insurance.