acyclovir regimen

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

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  1. Caribbean

    Caribbean New Member

    I'm bumping this thread once again as I have had several Pm's and emails asking me for info on Acyclovir.
    So I hope this helps the newbies as it is another treatment to consider in your quest for some relief with this beast Meniere's.
    As I have said before "ACYCLOVIR IS NOT A CURE". However it has helped myself and many others to get on with their life once again.

    I have no financial gain in telling people about my success with Acyclovir, but rather a personal gain. If I can help at least one person then I have succeeded.

    God Bless and good luck...
  2. gwe21

    gwe21 New Member

    My ENT also said that it doesnt work for MM. Wouldnt even entertain the idea for me!
  3. bostonjim

    bostonjim New Member

    I thank God everyday for the success Jim, my husband, has had with Valtrex. He has been symptom free, dizziness and hearing loss wise, since starting on this 2-3 months ago. He went from almost daily attacks, symptoms to nothing. We still realize that the beast could come back, but are very hopeful.

    It is so worth a try.

  4. gtrvox

    gtrvox our pooch Hugo

    That's always the fall back position until new studies come out that prove that it actually IS effective. In the meantime, hundreds of people are not being helped. I simply don't see what the harm is in writing a prescription. If it doesn't work - so what? It's not the doctor's money and it's not like he/she is prescribing heroin!

  5. dizzjo

    dizzjo One day at a time & baby steps!

    There is some controversy among Drs. about what to call the symptoms we have. Most of them won't agree on the cause or cure because it is not known. We are working with many unknowns.

    Many who respond to antivirals are thought to have Endolymphatic Hydrops and therefore the antivirals seem to help but still not cure. You may remember Sam the Ham or E Hydrops who used to post here about getting his disability and who had EH rather than Meniere's. The antivirals seemed to help him.

    Everyone who has Meniere's is believed to have EH too, although those who have Endolymphatic Hydrops don't necessarily have Meniere's disease. confusing isn't it?? ???

    Then there are those who are diagnosed with AIED (Autoimmune inner ear Disease) which generally affects a patient bilaterally and responds well to steroid treatment like Methotrexate and Prednisone. The symptoms are similar or identical to Meniere's Disease but treated differently and still not a cure.

    Because they believe AIED to be autoimmune related, it is inherited and that is the cause. There is still no cure. They also believe environmental issues to cause AIED but who really knows and understands?? With an autoimmune related response - you don't need to have anything a relative has or parent has but something else or many somethings that no ole else has.

    I believe that is why we are all responding differently to different treatment.

    Meniere's Disease has many different treatments that sometimes seem to overlap in how a person responds to treatment. No one thing (treatment) works for all collectively.

    Basically all the above; Endolymphatic Hydrops, Meniere's disease and AIED all have similar symptoms that affect us in the same way but respond differently to treatment.

    Currently I am taking Acyclovir for a cold sore that started yesterday. I have taken Valtrex in the past with good results and trying Acyclovir this time. While I am on this I don't notice any difference with regard to Meniere's symptoms.

    I have reached a point where I no longer have the attacks and don't care what they call it, EH, MM or AIED - it is the same kettle of fish.

    We all have to chart our own course and learn as much as we can and know what works best for each of us. I wish more Drs. who treat this would communicate more with one another - maybe they could get to the bottom of things. ::)

    The facts is that they don't really know what we have until they do an autopsy on us, so they can only guess. We probably will find that there are many different diseases that we collectively have if enough study is ever done.

    Whatever we are comfortable with, whatever helps, that is what we will do.

    Meanwhile - I just thought I would drop in and add my 2 cents worth. That is it! :D :D 8) Sometimes I just want to ask? Does it really matter?? ??? ???
  6. LisaB

    LisaB New Member

    Hi Joyce- I guess the only thing that matters is that we keep searching for relief, and wish that everyone gets it in their own way. It's sure nice to support each other, and I like your point of view. Lisa :)
  7. OnTheBorder

    OnTheBorder New Member

    I haven't taken acyclovir, but I do know that my Menieres symptoms are very bad when I have cold sores. I don't get them very often, but have been watching to see if there is a relationship. I'm pretty sure there is, but I'm not real sure it's the reason I have Menieres. In fact, the last big vertigo attack happened around the same time as the last cold sore. I'd like to try the acyclovir someday to see if it would help in my case.
  8. Caribbean

    Caribbean New Member

    What are you waiting for? I found that once I started taking Acyclovir, my hearing ceased to get worse as the MM attacks had also stopped...

    Good Luck
  9. OnTheBorder

    OnTheBorder New Member

    I can't talk my doctor into letting me try it. I've talked to two different docs including my ENT and still no-go. My primary care doctor read over the Japanese study, but when I printed it off for him, but that was about the extent of it.

    I feel like there might be something to it since I get cold sores a few times a year. When I mentioned this to my naturapath, he gave me some L-lysine cream to use and it seems to make a difference with my symptoms. I don't know if this is the primary or secondary cause of my menieres, but I feel very confident that it affects my symptoms to the point that I can't ignore it. I can always tell when I'm getting ready to have a fever blister since my symptoms are always at their worst prior to noticing the blister.

    I'm going to try to remember to take the L-Iysine whenever I notice bad symptoms and see if it makes any difference. My Naturapath said it doesn't hurt to use it at anytime. I tried taking it everyday a little over a year ago and it seemed to help.
  10. LisaB

    LisaB New Member

    I find a parallel with how docs act with this and the meniett- my doc so pooh-poohed it at first, saying there was no "reason" for it to work, and yet it does for so many. Now the practice suggests patients consider it. It seems that dizzyness can be caused by so many things, why not try different treatments, if they are non-invasive? Lisa
  11. Caribbean

    Caribbean New Member

    I could not have said it better Lisa...
  12. tstjmann

    tstjmann I live my life for my wife and two boys

    Does anyone know a doc that prescribes acyclovir in the Pittsburgh, PA area. I am fighting with my Nueroctologist, my ENT and my PCP to get a script of this to try with no luck. They all say that there is no evidence to back up my claim. I showed them the Japanese report and they just brushed it off.

    I have a history of very bad herpes in my throat since I was 12 years old. I would get break outs that would hurt so bad that I couldn't eat for over a week. I would also get very high fevers and swollen glands in my neck. Although I haven't had a bad breakout for over 10 years now,( I still get small blisters in my mouth and throat at least once or twice a year) I have a feeling that the herpes may have migrated to my ears and is causing my MM symptoms.


  13. Caribbean

    Caribbean New Member

    Can anyone help Tim with the assistance he is seeking for a Doc. in PA?
    Tim I can buy Acyclovir over the counter here very cheep, however I don't know the pitfalls with US customs if any?
    I would ship if possible...
  14. tstjmann

    tstjmann I live my life for my wife and two boys

    Larry - Thanks for the offfer but I don't think that it is legal to ship drugs into the US. I put a call into my ENT and PCP yesterday insisting on trying a one month regimen. They never returned my call. I'll let you know how I make out.

  15. Caribbean

    Caribbean New Member

    Tim - I'm Interested in how you made out getting a script for Acyclovir in PA? and if you did, how did it go?

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