Acyclovir anti-viral treatment : For you newbie's

Discussion in 'Your Living Room' started by Caribbean, Apr 3, 2009.

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  1. Caribbean

    Caribbean New Member

    For you newbie's who are inquisitive about anti-viral treatment and Meniere's.

    I stated taking Acyclovir 400mg 5 times a day for two weeks and then followed up with a maintenance dose of 400mg twice daily for another month.

    For me I had tried just about everything else to no avail, Acyclovir along with with a little Xanex got me through this dreaded ordeal with the beast... ;)

    Here is the original link to the "ACYCLOVIR STUDY" that I followed some years ago now.

    You've got nothing to lose but you're MM / Good luck

    Be well / Larry
  2. jerry_meyers

    jerry_meyers New Member

    Hi Larry -

    How long did this amount of the drug hold you until your symptoms came back? I imagine Acyclovir will need to be taken again if successful.

    Did all of your symptoms improve?

    Sorry for the questions, I'm currently taking Acyclovir and it seems to be helping with dizziness but the tinnitus and my hearing are as bad as ever.
  3. Caribbean

    Caribbean New Member

    Hello Jerry, Acyclovir helped all my symptoms except tinnitus. The amount that I take seems to last for up to a year and then I need to restart the program (a small price to pay) all over again however for me it kicks back in again after a couple of days on Acyclovir

    Acyclovir is a very safe drug, a few here choose to take a maintenance dose every day of 400mg, without recurring symptoms...

    Another person here (Johnny Detroit) just came back after a four year remission and had to restart the study.

  4. Caribbean

    Caribbean New Member

    I forgot to mention that Acyclovir also stopped my hearing loss, my hearing has stayed the same in the 4+ years since taking this drug...
  5. June-

    June- New Member

    I don't have vertigo or dizziness, only hearing problems. Acyclovir made big improvements in the distortion of my hearing and reduced the level of my tinnitus considerably. It took probably a month or more for me to get the max benefit. I have taken famvir as well. I do not take either one all the time. One thing I keep in mind is how viruses work on other parts of the body. When I had mono, it took months after the active stage was gone for my spleen to get back to normal. It might work the same way with the inner ear or auditory nerve.
  6. Trinity

    Trinity Bilateral Menieres 20 years, 24-7 symptoms,

    Does anyone know if Famvir is a good as acyclovir? when I first started taking it at 500 mgs three times a day it seemed to be helping. Now that I am taking 250mgs twice a day it is not doing anything at all? Thanks Carole,
  7. JessiesGirl

    JessiesGirl New Member

    Since I recently started having some issues with my good ear, I decided I'd like to try anti-virals. I mentioned it to my new doctor, who made a face initially, but after we talked a bit more, I circled back to it, reminded him of the Japanese study, and the fact that it involved minimal potential for harm, compared to most of the alternatives, and walked out with a prescription for 1000 mg of Valtrex.

    I plan to start this weekend, but wondered if there's anything I should be aware of before I start. Does this need to be taken with food? What potential side effects should I watch out for? Anything else I should know to watch for?

    My doctor really didn't know anything about anti-virals as a treatment, but I've found that when you are very knowledgeable about the various treatment protocols and your doctor sees that, you tend to get better results when you express a desire to try something outside of the realm of their experience. I can't emphasize enough to newbies here how important it is to educate yourself and become your own advocate. It makes all the difference, not just in the treatment you get medically, but in how doctors treat you, listen to you, respect you, and allow you to be a partner in your own treatment.

    I'm also trying NAC in hopes that it will help prevent future hearing loss. For those who haven't heard of it, google "NAC" and "the hearing pill" and you may find the results intriguing. While NAC is being studied for its potential to restore hearing or prevent hearing loss caused by trauma/excessive noise exposure, the fact that there is some evidence that it DOES prevent hearing loss or even help restore lost hearing makes it worth looking into.
  8. johnnydetroit

    johnnydetroit New Member

    Yes! I think that every single person with menieres/cochlear hydrops/sudden sensorineural hearing loss should take an anti-viral ASAP. The sooner the better so that the virus doesn't do permanent structural damage to the fragile inner ear membranes and nerves. Once the damage is done, then total remission and "cure" of all symptoms is harder and harder to achieve. Luckily i took my first round of Acyclovir only 6 months into my hydrops diagnosis 5 years ago. It gave me complete and total relief of ALL symptoms (roaring tinnitus/fullness/distorted hearing loss) and my hearing went from 60db loss low freq. to perfect...and stayed that way for nearly 5 sweet years. I had a relapse this February after a string of bad colds and the Flu. Unfortunately i didnt get my Acyclovir prescription refilled for over 24 hours after my hearing loss and fullness suddenly came back. It took me 3 full days to knock the really disturbing symptoms out, and a few weeks to get the roaring and pressure to subside. This time it hit my high frequency hearing with a 50db loss. I've recovered a good portion of that loss now, but think i maybe have a small permanent loss this time. I will find out on April 23rd when i go see Dr. Richard Gacek in Mass. and get an audiogram. I still have a minor plugged feel in my ear,(but no pressure) but it could be from the eustacian tube dysfunction and fluid behind the eardrum that my local ENT discovered at my last visit 3 weeks ago. Overall, i'm back in remission with some risidual minor symptoms, but completely have my life back. Im even hitting the gym again and am able to focus and perform at my high stress job.

    Everyone needs to at least try the antivirals to rule out a viral cause of their symptoms. It's the easiest fix out there believe me! Worth the shot. If it doesnt work...then continue with the other usual lines of treatment.

    Give it time to work too. Do the high doses (2000mg daily) for 2-3 weeks and then drop the dose to 800-1200mg for a few weeks after that, you should notice improvement of symptoms by then. If so then continue an 800mg maintenance dose for awhile to keep the virus at bay.

    The thing i notice after taking a pill is that the roaring tinnitus INCREASES drastically and the fullness does too. this happens about an hour and a half after taking each pill like clockwork. Then the symptoms really die down about 4 hours after that. It can be first i thought "oh no, this is making me worse!" but it was actually battling it out with the virus and you'll feel it!

    That is how you know it's working, so watch for that when you take your pills.
  9. Caribbean

    Caribbean New Member

    Great post Johnny! I'm so glad you're back in remission once again do to Acyclovir... ;) 8)
  10. June-

    June- New Member

    Hi Carole. As you know, Dr Derebery thinks it is best. Do you mean the improvement has not continued to get even better or you lost the improvement you got initially? The dosage question might be an interesting one to pose to Dr D. All I can say is my improvements were not in a straight line, every day better than the previous, they were a zigzag line but the trend kept getting better. Also there was a period last summer when I started going backwards and I thought nothing was going to work, not the antivirals, nothing. Then it got better. I think that was due to some allergies (for me gnat bites) that happen at that time of year. I am apprehensive about that time of year coming around again now. Good luck, don't throw in the towel, little by little you may be able to pin down the components and win this war.
  11. hoolard

    hoolard New Member

    Do you think its feasable to start a maintenance dose of L lysine after the initial anti-viral treatment, to keep the virus supressed?
  12. June-

    June- New Member

    This is a question I am going to pose to my dr one day, I would like to hear her perspective on it. It does seem a lot of people get help from John's regime and he puts the most emphasis on the viral component to mm. For me, the issue is that I have so many allergies, any supplement could in itself be an issue. For instance I found out my calcium supplement had cornstarch in it. I have a corn allergy .... But it is an interesting concept I would like to know more about.
  13. LeeAnn

    LeeAnn New Member

    Thanks for the great info JohnnyDetroit! - I sent you a PM re Dr. Gacek.
  14. Caribbean

    Caribbean New Member

    I sure don't see why not and I'm almost certain John of Ohio would agree as he is the resident authority on L lysine...
  15. John of Ohio

    John of Ohio New Member

    Tom, I'd strongly recommend that. My regimen conquered Meniere's (didn't have antiherpetics 10 years ago), but I continue to take 500 mgs of lysine every night before I go to bed. I've never had the disease return (although I also take a lemon bioflavonoid, a ginkgo, a lemon bioflavonoid, and all the other parts o my regimen except Vertigoheel).

    The thing to remember is that once one has a herpes virus it will remain buried in nerve or other cells for the rest of your life. Lysine and antiherpetics merely keep the virus from growing or replicating. I believe that if you don't take some deliberate measures againt the virus, it's only a matter time before it becomes active again.

    --John of Ohio
  16. deadeye

    deadeye New Member

    started taking lysine on an empty stomach 2 months ago. my symptoms went away about 80% for 2 months. they came roaring back a couple of days ago. appreciated your thoughts. should i get on famvir along with the lysine? took my allergy shot on wed. it itched more than normal. who knows what the culprit is. dang it felt good to be my old self for awhile.
  17. johnnydetroit

    johnnydetroit New Member

    Interesting study by Dr. Richard Gacek

    Menieres Disease: a Viral Neuropathy
  18. Caribbean

    Caribbean New Member

    Thank you Johnny, this is indeed a significant and excellent article by DR. Gacek...

    Ménière's Disease Is a Viral Neuropathy
    Richard R. Gacek

    Department of Otolaryngology - Head and Neck Surgery, University of Massachusetts Medical School, Worcester, Mass., USA.

    Morphological and clinical evidence supports a viral neuropathy in Ménière's disease (MD). Quantitative examination of 11 sectioned temporal bones (TBs) from 8 patients with a history of MD revealed a significant loss of vestibular ganglion cells in both the endolymph hydropic (EH) and non-EH ears. Transmission electron microscopy of vestibular ganglion cells excised from a patient with MD revealed viral particles enclosed in transport vesicles. Antiviral treatment controlled vertigo in 73 of 86 patients with vestibular neuronitis (85%) and 32 of 35 patients with MD (91%).

    Richard R. Gacek, MD
    University of Massachusetts Medical School
    55 Lake Avenue North
    Worcester, MA 01655 (USA)
    Tel. +1 508 856 4162, Fax +1 508 856 6703, E-Mail [email protected]
  19. solari

    solari Administrator Staff Member

    Interesting stuff. Since John's regimen has worked so well for him (and others), I'm wondering if the Lysine is just as effective as antivirals? In other words, would it be a good substitute?

  20. deadeye

    deadeye New Member

    how does lysine attack it differently? should you combine lysine w/famvir?

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