I am wondering other people who have had success with antivirals have seen them lose their effectiveness in controlling symptoms. That has happened to me. I was diagnosed with Meniere’s disease in 2008 and start having dizziness problems in 2009. I soon found the JOH regimen on this website and tried a limited version of it (lysine, lemon bioflavonoids, vinpocetine, and gingko biloba) with almost immediate success. My daily dizzy spells suddenly stopped and I was able to live normally again. Then two years later, in 2011, the dizziness problems started up again. I came back to this website, read about Dr. Gacek and went to see him. The valacyclovir he put me on worked. Although the pressure in my ear fluctuated, I was able to live normally for four years without worrying about having a dizzy spell, taking both the limited JOH regimen and one gram of valacyclovir daily. In 2015, the effectiveness of this combination began to fade, and I began to get mild dizzy spells again, with increasing frequency. I retired in early 2016 at 64, thinking that the reduction in stress would improve my health, but it got worse. Now I am having frequent mild dizzy spells, so often that I am afraid to travel. Dr. Gacek suggested increasing valacyclovir to two grams for a month or switching to 500 miligrams of famvir. The increase in valacyclovir didn’t work. I spent half of Thanksgiving in bed. I may try famvir. I need a third miracle to get Meniere’s disease back into its cage. Has anyone experienced the problem of having antivirals gradually become ineffective after seeming to be effective for years, and if so what did you do? Have there been any new developments in treatment in the past four years? I will appreciate any suggestions.
One thing I have been wondering about is whether a switch in the brand of generic valacyclovir may be the culprit. My current brand is Aurobindo.
Bill, I am new to the anti-viral regimen, but from numerous posts I have read it is entirely possible that the brand of generic valacyclovir could be the culprit. Apparently, actual Valtrex has had the greatest success and Mylan generic has been the least effective. I am changing from Mylan to NorthStar which was accomplished by a call to express scripts which is my pharmacy. Best of luck getting this beast back into its cage.
How can I find out which mail order pharmacies carry Northstar? I went over to my local CVS and found out that they have Mylan and can't get anything else.
Bill, I experienced the same thing. Suddenly, the valacyclovir was not working. I was freaking out. Then I realized they had switched generics on me. Instead of fighting the pharmacy, I got my doctor to script name brand Valtrex as "medically necessary". I occasionally get a call from my insurance company asking if I'd like to switch to generic. I politely decline. Obviously, not everyone is fortunate enough to get name brand, but northstar generic has good ratings here and on the herpes boards.
Bill, I got the same response from CVS which prompted me to immediately call the long-term Express Scripts which is my company's preferred pharmacy for meds required over a long period. Unfortunately, the number I have for Express Scripts is specific to my company so it may not do you any good. I just googled valacyclovir and Northstar and found a strand of really upset people dealing with herpes who are getting no relief from Mylan and who all state that the Northstar brand is effective so there is little doubt that it is worth pursuing. If I were you I would call Northstar directly and ask them how you can get their product. Contact info below: Customer Service Toll Free: 1-800-206-7821 24-Hour / 7 Day Response Line
I have found out that Northstar distributes through McKesson, which serves Costco, Sams Club, Rite Aid, and Walmart. There's a Rite Aid near me that can special order Northstar, so I will pursue that. I'm on Medicare Part D, with pretty skimpy coverage, so Valtrex would cost me a fortune. I'll try Northstar first and pray it works. I haven't been paying attention to who was making my generic valacyclovir. It turns out I was using Mylan's valacyclovir, and it was working for four years, but my insurance has changed twice this year, along with my drug providers, and lately I got switched to Aurobindo's version of the generic without noticing.
I reported this several times already to the FDA, but they don't care. Apparently, no one cares if people suffer as long as they get paid.
a/v's temporarily gave me my life back several years ago for a few months;the virus eventually figures out a way around it;sneaky little bastards
That is very unusual to hear. Antivirals almost never conk out like other types of meds. Might it be possible that you were switched to a different brand, or maybe it was just a coincidental remission from a non-viral cause that you had during that period of time?
scott i think that would be the norm;some people get better with a/v's and hold it;i'm afraid most don't;glad you feel well
On what data do you base this evidence? Dr. Gacek has been doing this for 10+ years and reports a 90% success rate in a peer-reviewed published paper. He indicated to me that he has not had any patients conk out on antivirals, and that the only side effects reported to him were gastritis. I also peruse the herpes and shingles boards, and have yet to see anyone conk out. Antivirals are notoriously strong long-term. If they did as you suggest on a regular basis, then AIDS would still be a death sentence.
Also, if you feel that the antivirals conked out, then switch to a different one. Famvir has worked for folks here as well.
I had an increase of symptoms that I was able to trace to a switch in generic brand. Now I'm on Valtrex. It had been working beautifully, but am having a recent new problem, which I'll post about elsewhere.
It has been one week since I switched to Northstar valacyclovir from another manufacturer, and I am already feeling much better. The pressure is way down in my ear from where it was, although it's still fluctuating of course. If I get just hold this level of improvement for another week or two, I will conclude that my recurrence of dizziness symptoms was due to getting crappy valacyclovir for months and not realizing it. I sure hope that was the problem, because it's very easily solved. This has made me wonder about the quality of the Lysine and other supplements I've been taking. If I can't trust the quality of medicines regulated by the FDA, how can I trust the quality of supplements, which are not regulated at all?
Lysine, if from any of the major suppliers (Vitacost, Swanson's, Vitamin Shoppe), will be pure. It's not a drug; a simple amino acid which is easily purified. You can trust the stuff from Vitacost because they have a massive in-house quality assurance lab. Everything is tested for purity before it goes out. You don't have such concerns about any of the many foods you eat, none of which are tested or approved by the FDA. In fact, search around and try to find a case of an adultered or defective supplement sold by any of those three companies. Not a single case, particularly for the things in my regimen ( http://www.zoominternet.net/~kcshop/JOH.pdf ). --John of Ohio