It doesn't mean that it doesn't work. Dr. Gacek got a 90% success rate with generic acyclovir. It just means that valacyclovir is better.
June, thanks for the tip on spreading the dosage out across the day. For awesometx, I just got off the phone with my ExpressScripts Pharmacy and they have annotated my file to state that all refills of valacyclovir must be filled with pills manufactured by North Star. I cannot attest to the North Star efficacy, but based on the information I have read on this wonderful site, I am replacing the Mylan brand I have been on for the last few weeks with the North Star brand. Of course, we cannot discount that this may all be placebo and North Star may work better because I believe it will work better. Personally, I don't care as long as it helps right the ship.
It would be very unlikely to be a placebo given that many of us experienced this without ever reading about it ahead of time. The placebo effect occurs when you feel relief because you think you're getting the drug. What we experienced was return of symptoms after switching to a different generic. If anything, it would be a nocebo effect (but not exactly). And again, unlikely given that we didn't read about it or expect it. There are many independent observations of this same phenomena. It also is discussed widely on the shingles and herpes forums. Mylan sucks.
I concur and was being a little facetious. When I've told most of the doctors I've seen that I'm on the JOH regimen, they like to point out the placebo effect. It's easy to dismiss this thing if you're not actually suffering from it.
Yes I actually got a chuckle out of a dr when I told him about the JOH regimen. He said it can't hurt but probably does nothing.. I could not disagree more. John and his regimen have always been one of the biggest saviors in my entire life. It lifted my fog it gave me life back. I am in a setback right now but confident of righting the ship and tweaking things a little. Course my Urologist found my idea of taking Quercetin to keep my prostate from swelling laughable as well. His solution is to take Levaquin every single day of my life to battle prostate flare ups.. When Quercetin has worked wonders. Stopping it for even a few days and I have discomfort.
Unfortunately, a lot of doctors just don't get anything outside of the narrow box they live in. There are a few good ones, but the vast majority that i've run into leave a lot to be desired.
Any side effects you all have on that antivirals? Only one that really draws my attention is the confusion, hallucinations lol.. I tend to be very susceptible to stuff.. When it says "some side effects may include?" I am the SUM. Considering I am home alone while wife is gone I just worry about the kids and me having that bad of confusion
Teesdale-that is excellent. When I tried to get ExpressScripts to fill with Northstar they said that they consider all generic to be the same and would not promise or work with me on it. I was forced to pay cash for a while until an insurance change. Even now I pay more per month than I would if I could fill with ExpressScript. Congrats!
I was told by my pharmacist that the hallucinations are extremely rare, and you'll know it within days. They are not the scary suicide type. She said it goes away immediately after discontinued use. I asked my kid to watch me and call the doctor if I started acting strange. There was no issue, as is the case with 99.99% of users.
My wife will be in town for a week.. i may try to get an appointment with my GP and see if he might prescribe them. I talked him into SERC. So maybe without a ton of tests I can talk him into antivirals. I still need to go back to a more vestibular issue oriented facility. Methodist here in Houston appears to deal with it when I google it. But last time around that took about a year from first visit to tests. So not really wanting to wait that long. I tend to be THAT GUY that gets side effects lol my wife tells me I overthink and bring them on myself. But to be honest lol... It is like vertigo heel .. They say it is a placebo. But if it works who cares. I may cause my own side effects. but I feel them psychologically so I feel there is no difference lol. Kids are too young to watch me unfortunately. But I will try to get appointment to see. Who knows. He may not be nearly as willing to fork over antivirals. When I went for SERC his first response was meclizine and benzos. Though with the amount of stress from wife being gone for over a year with her mom and kids and job and me here. I know my stress is amped to about 3000% and they say virus's love stress. I have amped my Lysine now and will go to 4000mg a day in mean time till I can get antivirals and convince myself to take them lol.
I get side effects from everything too. I waited two weeks after getting the rx because i figured 1) they wouldnt work and then i would have no hope and 2) i would get side effects and have to quit them. I can taste most meds and feel them but not antivirals. I think the risk is biggest for people with any kidney issueand you should drink water when you take them. But even though they gave me no problem at all, i do not take a maintenance dose because i Dont need one and why invite risk that isnt needed in my case. Give it a shot, see if you are one of the lucky ones they work for.
I've been on Valtrex now for two years. Recently, i upped the lysine from 500 mg to 3000 mg and reduced the Valtrex to 500 mg per day in the mornings. All seems to be well. I plan to eliminate the Valtrex after a month or so and see if the lysine can handle it alone. I'll report back on that when i know more.
Yes, good luck Scott and please report your results back. I have been on valacyclovir (3G per day) (Northstar) since 15 December and I have been symptom free for 6 weeks. My hearing has improved and even the tinnitus is much more tolerable. A few months ago I was at my wits end with this disease and thanks to this site and the people on it I have a whole new appreciation for life. Best of health to all.
That's great news! Congrats!! I'm doing well. No issues at all so far. I'll report if there is any changes.
I have been on the reduced maintenance dose now for over a month now and everything is fine. I am taking 500 mg of Valtrex per day in the morning. I also take 1500 mg of lysine mornings and before bed. I would not recommend that people start at this dose. I've been 100% for over a year before even considering this. If you're new, start at 3000 mg of Valtrex daily for at least 3-6 months before giving up. And supplement it with 3000 mg of lysine taken on an empty stomach (divided up across the day). Avoid high arginine/lysine ratio foods.
I think I started taking 1000mg+ a day Valtrex around September. That is, 1000mg maintenance dose and more on days when I felt bad / dizzy. As I was in a pretty bad patch when I started things got better, but then I said at the time, at times they do anyway. When things got worse again I'd blame it on me forgetting the meds and I'd take more. Eventually it got back to a cycle of dizzy at times, not dizzy at others, and of late it's going back to the bad times. So I really started to wonder if Valtrex is actually doing much apart from costing me a small fortune and I'm cutting back to 500mg a day to see the effect. I did start a sheet noting the days and times I got dizzy and I really wish I'd kept that up as it would be handy for some kind of objective analysis. But what this puppy really, really needs is a double blind study.
We also need double blind studies for low sodium diets, steroids, and diuretics. Even shunt surgery has failed to show significance in a double blind study i believe. There are so many variables in cause and variations like MAV, CH vs EH vs classic menieres ... that it makes it almost impossible to get a group of like subjects for such a study imo. But it still would be helpful and i hope they do and they also control for other things that impact the immune system like allergies, meds etc.
FWIW, in my case only, i seemed to get a very significant improvement specifically in the area of dreaded distortion from taking ant ivirals for several months. I never took them long term. From that point on it seemed to me that the continued improvement which was more in the area of hearing (not distortion) and some degree of eustachian tube function from allergy shots and time for healing. I do believe the antivirals kept it from getting worse but i did not take them long term nor seem to need them long term. Just my case.
No offense, but what this puppy needs is for you to take the meds properly. It's like taking a quarter of a tab of Tylenol and complaining that you still have a headache. Valtrex is not like Xanax. It doesn't "kick in" immediately and it's not designed to yoyo dosages depending on how you feel that day. It takes a good long while for it to settle in and do its work. You need to stick to the 3000 mg per day regimen for at least 3-6 months before saying it doesn't work. Every day. Never miss a day. Do it like your life depends on it.
