acyclovir regimen

Discussion in 'Your Living Room' started by hoopndoc, Oct 16, 2006.

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  1. hoopndoc

    hoopndoc New Member

    Hello all,
    I was wondering does anyone know the exact regimen of acyclovir that the docs up at Mass Eye and Ear Infirmary use? I believe it's very high doses of acyclovir for two weeks, or even a month, followed by a maintenance dose after that. I believe that a Dr. Gacek is one of the proponents of this approach. Any help would be appreciated.
  2. Soccermom

    Soccermom New Member

    I was JUST NOW thinking about posting something regarding Acyclovir. I thought that since the boards crashed, all that good ol' info. might be lost to the newcomers here.

    As it happens, we live in So. Calif., but were in regular contact with Dr. Gacek by email. He helped us find a Dr. near here (a regular ol' ENT) who used to train under him, and who is a believer in the antiviral approach to Meniere's. The main hurdle for us was getting a Dr. to prescribe it!!

    Per Dr. Gacek, the recommended dosage is: 800mg TID (3xdaily right?) for 3 weeks, and then a maintenance dose of 1 tab daily.
    My husband has been on Acyclovir since (I believe) March. He has not had one problem since. This is almost 7 months. This is the longest stretch he's gone without any dizziness at all. In this time he has also tested his sodium (sometimes ridiculously!), battled a really bad headcold, changed jobs (after 22 years - talk about stress!!), increased his work hours, decreased his sleep, and what else? All these were triggers in the past, but not since being on the Acyclovir. Oh, Dr. Gacek also said that, while on the maintenance dose, if symptoms flare up (dizziness, etc.), go back to the 3xweek for a couple weeks.

    Coincidence? Maybe. But I don't think so.

    Please email or PM me if you want. I love to talk about this subject as I really believe it has been a Godsend to my husband. I credit the nice folks here for steering me in the Acyclovir direction (Johhny, Larry, others - you know who you are!) and for helping me to not give up!!!

    Good luck!!
  3. Caribbean

    Caribbean New Member

    Thanks Soccermom...............If between Johnny Detroit and my self we have helped at least one person then its been worth it and I think Johnny would agree............Here is the recipe that helped us!
    Acyclovir..............400mg. five times a day= 2000 mg. per day for two weeks and a follow up or maintenance dose of 800 mg. Daley
    I have been on this regimen for about 3 years now and only have problems with Tinnitus 24/7

    It gave me my life back ;D

    If you don't try you will never know..............

  4. Soccermom

    Soccermom New Member

    So happy to see you around here still!!! Glad to also hear you are STILL doing well with Acyclovir!!! Do you still take the maintenance dose daily?? I think Johnny weaned himself off and then maybe only took as needed. Not sure though...
    I'm just curious if my husband will take the maintenance dose indefinitely or try to go off of it.

    Thank you again from the bottom of my heart. You are the best!!!!

  5. Caribbean

    Caribbean New Member

    Hi Laura,
    First of all I'm so very happy for your husband's success with Acyclovir, you are one determined lady to seek a solution to your husbands disability........As for the maintenance dose I also tried to wean myself off but found that after a few months the "BEAST" would return with a vengeance.
    So I'm taking a maintenance dose of 800mg, daily 400mg, morning and 400mg evening for two weeks then stop and then take L-LYSINE
    Essential Amino Acid twice daily, You can buy in any Walmart over the counter..........
    and thank you with more caring people like you this world would be a better place.
    PS: Do some research on the L-Lysine can't hurt!

  6. Rick in Mo

    Rick in Mo New Member

    Acyclovir was my savior!!!
    I think I'm one of the first on this board that tried it after reading the Japanese study that John of Ohio pointed me to years ago.

    I did what the JP study used, which was 400mg x 5 per day for 2 weeks, if memory serves... I was at wits end with this disease, having vertigo attacks 4-5 times per week, every week when I started. After 10 days I was having 0 attacks. I quit taking it and a few months later it came back... back on Acyclovir for the 2 week regimen and again it knocked it out, but faster this time... It's really only come back (and I'm only talking about vertigo, the rest of the symptoms remain) once or twice now in the past few years, so I feel blessed. I keep a supply of acyclovir on hand just in case the beast does come back... but haven't had to take any at all in the last at least year and a half...

    I highly recommend anyone try this, because it can't hurt. I remember on the old forums before the crash there were some polls that I had setup asking for people results that tried acyclovir, famvir, and zovirax.
    The polls were a little skewed because I included a vote for those that had never taken either... but, there was a pretty good percentage of folks that were helped by the antivirals.

  7. wbfree

    wbfree New Member

    Thanks for this information. I had never heard of this and am going to try. Joe
  8. dmac

    dmac my sweet Holly

    :mad: Well, dammit!! I brought this up with my nerdy ENT yesterday and said "no, we studied that in Dallas where I went to school and it doesn't work".
  9. ToniG

    ToniG Guest

    Not to be a stick in the mud, but all of my of ENT's or neurotologists have said that if Famvir or acylovir works for you, it's not typical or atypical menieres.
  10. sotko

    sotko New Member

    My ENT was the same. But Prof Gibson put me on Acyclovir, (although in Oz you need special permission to prescribe it, otherwise it costs an arm and a leg) as i always break out with cold sores and throat ulcers when i get the wobbles, preceded with tingling on my face and arms. My ENT wouldn't hear a bar of it, but i went with what the Prof said, as he is a leading MM expert. He tends to think mine is viral. My ENT (i don't like saying bad things about people) is a complete tool.

    So my GP ended up getting the permission. It was only 1 200mg tablet 3 times a day, which worked. Took it for about 1 month, no symptoms. Then got the dreaded tingles, so i went back on, but this time 2 x 200mg tablets 3 times a day. Took that for about 3 weeks, and all good.

    I also have a way off Atlas bone which will be getting corrected in the near future.

    For me, Acyclovir seems to work.
  11. Soccermom

    Soccermom New Member

    My husband's ENT was the same way. And actually, she is a neurotologist, and supposedly THE Meniere's Dr. in our area. She was nice enough to let him try it, but not at the dosage recommended by the Japanese study. And then we he felt it was helping, she wouldn't renew the prescription. She said that studies show it isn't effective. She also said that the House Clinic agreed that there was not enough support to show that it works.

    So we were persistent enough to find a Dr. near us (regular ol' ENT) that was recommended by Dr. Gacek (the believer in the viral theory), who prescribes Acylcovir without hesitation. Now nearly 9 mos. later and no dizziness, no vertigo, we are believers.

    I still want to get hubby to the NUCCA, as I think that could help him too. He was helped a bit by a deep tissue massage, so I think there's something there too....
    It's a continuing project! If only there were more hours in a day!!!

    Best of luck to everyone! And as I've always said, I think anyone should at least give Acyclovir a good try. Can't hurt. Might help, and wouldn't that be grand?!?!?!?!

  12. Caribbean

    Caribbean New Member


    Also glad to hear of your success with Acyclovir..................Would you by chance still have that link for the Japanese study or anyone else?
    Would be great for the newbies here on this site!

    Thanks Larry
  13. Soccermom

    Soccermom New Member

    You can try this link. This is the one someone gave me A LONG time ago! It seems a little hard to read....
    Maybe someone has a better one.

  14. Caribbean

    Caribbean New Member

    Thanks Laura,

    Yep that's the study all right, however you are correct its just a wee bit hard to read.

  15. Soccermom

    Soccermom New Member

    Maybe if you print out each page (I did that long ago!) it reads better....??????

  16. bostonjim

    bostonjim New Member

    Hi Hoopndoc,
    How are you? It's been a long time since meeting at the Shea clinic. I'm posting for Jim, as he doesn't post much. Dr. Gacek is at UMass Memorial hospital in Worcester, MA. You probably have the info. by now.

    Jim had the antiviral surgery, where Dr. Gacek injects it directly into the ear, this past spring. Sometimes if the oral method does not work, Dr. Gacek uses the surgery. He says he has a 90% success rate, as far as controlling the vertigo. Jim had a great summer with no vertigo and felt really good. The past month or so, he's had 3-4 minor vertigo attacks again. He's going back to see Dr. Gacek on Nov. 2nd for a follow-up and we are going to see what he suggests.

    I would definitely give the anti-viral a shot. I know that Jim has been 85% better since trying it.

    Take Care,
  17. Caribbean

    Caribbean New Member

    Hallelujah......................another anti-viral link to the "BEAST" ( A.K.A. MM. )

    Try Acyclovir.............Take the beast head on!

    How many more testimonials do you need before you try acyclovir!

    I'm sorry if I seem to be Preaching this regime to you, because its true I am.

    Being a member of this exclusive club MM. I can not sit back or get off of my soap box until I have convinced at least one more to join my club (Acyclovir)

    IT WORKS FOR A LOT OF PEOPLE ..............just like you.

  18. bigfool

    bigfool New Member

    Try this copy of the study. It's a little easier to read. If you have trouble opening it, PM me and I will send it to you.

    I have taken Valtrex (newer version acyclovir - thankfully covered by insurance) for almost two years - and it has helped with the tingling, burning, etc. I take other drugs as well and the combination of them, plus a lot of hard work -balance therapy, diet, exercise - has made me closer to normal.

    Wishing you all well!

  19. Rick in Mo

    Rick in Mo New Member

    That link is from my personal webpages... So, thanks for posting it here. I know it's a little hard to read, but that's the way I got it.

    Acyclovir was my saviour... it gave me my life back. I hope it helps others too.
  20. cheese

    cheese New Member

    Interesting read that study ....Thanks for sharing.

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