Week three on Valacyclovir.

Discussion in 'Your Living Room' started by Johan J, Mar 3, 2014.

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  1. Johan J

    Johan J New Member

    This is the third week I am taking 3000 mg Valacyclovir. On wednesday I am supposed to go down to 2000 mg. I am not sure what to think so far. I still have all the symptoms save for bad vertigo (haven't had a real attack since may) but in the evening it really clears up in my ears.
     
  2. Vicki615

    Vicki615 New Member

    Not having vertigo is great! Usually you try to decrease on schedule, if after decreasing symptoms get worse or come back, then go back up to the previous dose.

    What symptoms are you still having?
     
  3. msprygada

    msprygada New Member

    Wednesday will be 14 days for me and I too have nothing good to report. In fact, I would say that on the 2nd day in my bad ear I started to get loud tinnitus, hearing loss in some frequencies, and distorted sounds that basically has not stopped. Where before taking Valtrex, I only had this occasionally for the last 3 months. Seem like I am going in the wrong direction.

    I know some people have said it gets worse before it gets better but is this a response that others have seen? And when you had good results with the AV's, what does that mean? Does it mean that all of your MD symptoms went away? Only some of them?

    Up until I went on AV's I had low frequency hearing loss, fullness, varying tinnitus, varying sound distortion (follows tinnitus), and occasional lightheadedness but never any vertigo. What is realistic for me to expect...best case scenario? I just want to set my expectations.

    Thanks,
    Matt
     
  4. Intrepid

    Intrepid New Member

    Patience is key. It may take 6 months before you reap the benefits. Stick with the AVs so you can say you gave it your all. I don't take them but, over the years, many people have posted on how persistence was key.

    Good Luck!
     
  5. GLA

    GLA New Member

    Have you ever tried AVs, Intrepid?
     
  6. Intrepid

    Intrepid New Member

    Yes I have but they didn't change anything for me.
     
  7. msprygada

    msprygada New Member

    I will more than likely not have 6 months to try them out. My ENT agreed to do this for three months using Dr. Gacek's regimen and wants to see me in 3 months. Problem is the gave me two refills of 63 pills at 1000 mg. 21 days at 3000 mg/day, 21 days at 2000 mg/day, and then all I have left are 21 days at 1000 mg/day. That leaves me 31 days short of my 3 month appointment to see him. I did reach out to him to make sure that this is what he wanted or should another script be added to at least take me to the 3 month appointment so he can see of my progress and then make an evaluation but I have not heard from him yet. But I am guessing that if I walk in at 3 months and there is no progress he is going to say "hey....we tried" and send me packing.
     
  8. John of Ohio

    John of Ohio New Member

    Using lysine along with the prescription antiviral drug can be very helpful. If or when the ENT stops the drug, the lysine can be used alone, although it usually takes longer to suppress the herpes virus activity. Lysine can be used chronically without problems (and requires no prescription).

    Information in my regimen info, here:
    http://www.zoominternet.net/~kcshop/JOH.pdf

    --John of Ohio
     
  9. deadeye

    deadeye New Member

    i can't believe so many people have trouble trying a/v's i'm my dr's guinea pig for menieres i tell him what people around the world are trying and he gives me the prescription;period been on acylovir about 7-8 mths; am better with setbacks still have occasional fulllness,sensitivity,noise but i am steadier and symptoms overall are better/ getting up in the morning without steadying? myself is such a gift i still can't parade through walmart without getting alittle sick but things are better maybe try acylovir in small doses througout the day and give it a while i take 400 mg about every 2-3 hrs througout the day and one in the middle of the night hang in there; i really feel in a few yrs there will be some major advancements
     
  10. n632

    n632 New Member

    They never helped me...but give it a shot...I tried every and all ways before going happily to a VNS. Nicole, FL
     
  11. Johan J

    Johan J New Member

    I have been on parts of JOH's regimen for years now, I have had Menieres for 14 years. I have not experienced the really bad vertigo attacks for years now. I still get vertigo attacks but they only last for a minute or so. I can be dizzy afterwards, but the violent spinning stops. Fullness, tinnitus and hearing loss are still present. During the day, my ears really clears up, and then goes back, it is all very up and down right now.
     
  12. msprygada

    msprygada New Member

    Just got off the phone with my ENT's nurse and she said that the prescription the ENT provided (2 refills of 63 pills) is all he is giving me until I see him on May 20th. This leaves me with a month of no AV's "if" they work. So I guess I will take these and hopefully they work and then if they do, I will have to take the L-Lysine for the last 31 days and hopefully symptoms don't come back. I am not sure that he knows that Dr. Gacek's regemin calls for being on the AV's for life if this works or not even though I left him Dr. Gacek's paper on my last visit. I guess I will have to wait and see what his thoughts are on this.

    I am on day 14 of the AV's and no noticeable change for the better in my symptoms as of yet. I keep hoping.
     
  13. June-

    June- New Member

    Good luck. I hope you have some success soon.

    I would not count on yur dr reading the paper you left him.
     
  14. msprygada

    msprygada New Member

    he read almost the entirety of it while we were together. He is the one that pointed out that this was just theory but was willing to let me try it only because he knows of Dr. Gacek and made a comment that he was well respected in his field and that AV's were basically harmless.
     
  15. June-

    June- New Member

    Now THAT is impressive!
     
  16. June-

    June- New Member

    My family dr said to me 'you know, if a mother has cmv the baby can be born deaf', before she gave me the rx. CMV is a herpes mono that I had had a serious case of months before.
     
  17. Johan J

    Johan J New Member

    It has been a month now since I started with Acyclovir, and I don't know what to make of it really. The symptoms are like a jojo, going up and down during the day. I get several mini-spins from time to time. (I haven't had any longer attacks since May.) I am down to 2000 mg now. Should I get back up to 3000 mg for a while or just stick to the "schedule"?
     
  18. msprygada

    msprygada New Member

    Not sure about your dosing but what I don't get it is I see all the time on here where people say that they want to up their dose...where are you getting the extra pills from. I am currently on my 2/day part of the regimen of AV's and the Dr. counted them out...exactly. If I wanted to "up" my dose, I would be short down the road. So you just have an unlimited prescription in that you can go to the pharmacy and get a refill anytime you want????
     
  19. Vicki615

    Vicki615 New Member

    I was told if your symptoms got worse since you decrease then usually you increase it back up until you can decrease without symptoms worsening other wise you should stick to the schedule.
     
  20. yanksgirl

    yanksgirl New Member

    Read my post as of last night.stopping avs.

    No good results after 26 days. Feel worse
    And anxiety and depression is worse.
    Read where a.v's' can cause this too!
     

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