I can only add the we have to use Express scripts for any scripts over 30 days. I called them because my refill hadn't come and was told they no longer have Valcyclovir available through express scripts and no longer automatic refills. We still have to call...why bother? I called all of our Dr's and have meds going back to regular pharmacy. They do have everything we need so why bother with express scripts? I do hope you find a way to get them. Wasn't the Dr concerned about you stopping cold turkey? Usually, for most meds, they wean you off.
This makes no sense, Dr. Gacek has been doing this for years, surely the hospital is aware of his research and papers and if they are not he could provide them. Something fishy going on!!!! Dr's can call in prescriptions anywhere they want!!!! People ce from all over the world/country to see these guys. They write a prescription and the patient fills it at the pharmacy of their convenience. This makes no sense on many levels from Gacek.
The Simple excuse that Dr. Gacek is telling a patient that he is no longer allowed to prescribe Antivieals after doin it for 30 years.
According to the poster of this thread it is because there is no evidence they help per the hospital and pharmacy but when do hospitals and pharmacies tell Dr.'s what they can and cannot prescribe for patient, especially when his papers say he has a 90% success rate. Something strange going on June for Facek to say no more AV's for mm to a patient of his when he has already given them to her. I feel bad for the patient. Shame on Gacek!! Don't give me this hospital says crap, my wife works for Emory and she calles in medicine for me and the kids every time we need it down to walgreens. Nothing to do with Emory.
"The hospital is no longer allowing him to do as they are unproven" Kinda strange after so many papers of his telling us it has a 90% success rate for mm and he has been there 30 years. To suddenly stop? LeAnn----call his son in Alabama to get your AV's. See if he will help you out.
I am not sure what the true story is either, but I saw recently the NIH asked Gasek to reproduce his success and he could not. I will try and find the link.
I apologize if I'm upsetting the apple cart here. The doctor I see said that he's seen more papers that say antivirals do not work then they do work. Of course, he also said that he doesn't see a problem with them so he gave me a prescription for Valtrex. (Frankly, I've felt worse and had more attacks since I started taking it but ...) Outside of the symptoms themselves the biggest problem with Meniere's is that there is no test for it. If there was, for example a blood test, then there would be double-blind studies all over the place showing different drugs, doses, and results. The second biggest problem is that sometimes it just goes away on it's own only to return months or years later. OK, you took <insert thing>* and now you're symptom free. Well, that doesn't mean <insert thing> cleared things up. You might have gone into remission. It might have not been Meniere's. You might - Sorry to say - have it come roaring back. It could have just finally burned itself out. Or you could have done the exact thing to knock it out for you to which I say, in all seriousness, "Congratulations. Hopefully, I'll be able to to the same." Of course what caused your Meniere's symptoms might not be the same thing that caused it in someone else. Probably why the list of things to try is only lengthening over time. As I've said on other posts if something is working for you, then keep doing it. Just be careful with the "I did this and I'm cured!" type statements. That's the part where people get really confused and why doctors are very careful with what they state about Meniere's. I doubt it's a conspiracy, as others have conjectured, as opposed to they just don't know and aren't going to make claims they can't back up ... but that's just my theory. * == Antivirals, Nucca, Antifungals, JOH, Lysine, Prednisone, Chiropractor, "whatever it is Burton" does, Monolaurin ...
Bingo! There will never be a cure til they can id it. No doubt several - or many - disorders are thrown in the Menieres basket since it is a diagnosis by exclusion. Of course if you have three different ailments being called menieres, then no one cure will work for all of them. This seems so elementary but some doctors are stuck on the 'no cause, no cure' and almost smug about it. Fortunately many get it and treat the patient without a need to claim a cure for 'menieres'.
This is very true. A lot of people with PLF, SCD, or other issues are being diagnosed with Menieres because doctors are too stupid or lazy to figure out what's really wrong with them. MAV is also a common explanation for the same symptoms, and of course antivirals don't help with that.
More of the doctors are stupid and lazy stuff........just gets old. When you come down with cancer or need an organ transplant be sure to tell them that they are too stupid and lazy to figure things out.
More of the doctors are gods stuff........just gets old. Yeah, when i come down with a disease that wrecks my life, causes me have 12-hour long vertigo attacks, and has me on the edge of suicide, i'll just trust the first doctor who wants to chop something out. Get real, BD. You know exactly what i'm saying so stop with the nonsense.
In the end, looks like Gacek is the one with egg on his face as all his so called research and papers were for naught as he is unable to prescribe antivirals for mm because as his client posted here there is no proof that they work. Now what is the man to do? I guess he will do a lot of shunt's, laby's? Maybe we should just get rid of all those links to his papers that are posted all over this forum and posts encouraging patients to call him and make appointments. Kinda Sad if you ask me......My recommendation would be call his son in Alabama is you want to try the av route and see what he says. Surely he has spoken to his father lately.
Nobody ever said Doctors were God's very far from it, but they are surely not lazy and stupid. Just because someone does not have an answer to your/our problem does not mean they are lazy and stupid.
Hi all, When I asked Dr. Gacek what my options were for getting another prescriber, he had nothing to offer other than asking one of my other doctors to prescribe them. He said I could continue to see him but that he could no longer prescribe the Valtrex. Maybe they are regulating his use of this compound because he was doing research in the name of the institution? I don't know the legal implications and why Dr. Gacek's hands are tied. I do know that Dr. Gacek is very committed to using anti-virals and has a deep belief that they are effective. I'm sure he wouldn't cease to prescribe them without a great deal of pressure. I was considering Dr. Gacek's son if all other efforts to get Valtrex fail. I have seen and read reports of antivirals not being effective. I am not a die-hard antiviral proponent. When I had my first Meniere's flare which lasted 18 months, the worst of the symptoms (meaning the terrible, totally incapacitating vertigo) went into remission without any antivirals. 3 years later during my second flare, I went within 2 months to see Dr Gacek. Within 6 weeks of starting the Valtrex my vertigo subsided and I went into "remission" (I use the quotes because while the vertigo is currently gone - I still have fluctuating ear fullness and hearing loss). I can't say for sure that the Valtrex caused the remission. I was very pleased however that this flare was much shorter than the first episode. I have tried 2 times to slowly decrease the Valtrex thinking that I was just experiencing a placebo effect. Both times I have had increasing ear fullness which decreased when I ramped up the Valtrex again. It is hard to know what to think and what is right. I just hope I can continue to get the Valtrex somehow until I get this more figured out for myself. I hope to continue with my self-experimentation. I don't want to take any drug that isn't absolutely necessary. I have a belief that everyone is different and people are affected by the disease and "treatments" differently as well. My thoughts are with everyone with this terrible disease. I hope that we can all find the treatment that works for us. I also hope that Valtrex continues to be available as an option for those who have beneficial results from it.