I am taking JOH and Valacyclovir. It took me over two months to get any progress. It was a rough 2+ months! Once it made a turn the fullness and low frequency hearing loss started improving right away. I am a big guy (6’5” and 260lb) so I was taking 3g a day of Valacyclovir and 4000mg of lysine a day to try and kick start it. I eased down to 2g a day of Valacyclovir after about 4 months and after 9 months reduced to 3000mg of lysine. I have a feeling I will stay at this level from now on.
Nothings changed but had a v minor attack couple days ago and ear fullness/tinitus back with muffled hearing not sure whats changed on the whole though still v postive! any one have a similar story? Im about 3 months into this regieme
My experience with JOH is progress after about 6 months ( what I mean by progress - symptoms are less apparent, less frequent , less aggressive ) but they still present. It's not - you taking it and it's all gone, it's just - you taking it and it's a little bit better - FOR ME PERSONALLY THOUGH..hope some people having more luck with it. And as for Acyclovir and similar anti viral drugs - as far as I know it's not good for body to take them on the regular basis..they have their strict timeframes/schedules to take them for. And I think for adult male it's something like not more then twice a year for whatever number of weeks, don't remember. I personally take Acyclovir for about 2 weeks every 6 months - I think it helps to weaken the Menier's
Not true...antivirals are a relatively benign drug. I've been taking valacyclovir daily since March of 2019 with no problems.
Pa Cowboy, brother one of those cases where I'm glad to be wrong and be corrected, you know? It's just I heard that your body will sort of build a resistance or rather, immune system will sort of become lazy if you take acyclovir constantly and will stop protecting you if another papilloma virus ( or current one mutates ) comes in place.. But hearing you've been taking it since 2019 and no problems - is very encouraging! I should start doing the same, or at least do it for like 6 months and see..
An update: Doing well after a little over 4 months. Today on 1-1/2g of Valacyclovir per day and some Lysine as needed (I stopped taking Lysine every day a few weeks ago). Stable but very sensitive to foods that are high in arginine and low in Lysine. Full ear and muffled hearing appear whenever I eat foods high arginine/low lysine. Hearing is very good and balance is excellent (doing vestibular exercises every day helps maintain balance). At this point I'm living a normal life again with the exception of being careful of what I eat and avoiding loud noise. I feel confident that if I stay vigilant I will not have another major attack. I'll probably stay at this level of Valacyclovir until SP-10005 is available and hopefully that will be the final cure.
Not sure, but it has been in FDA fast track so that should speed things up. I'm hopeful that it is early in 2027.
Glad to hear you are doing well. I am am right with you. I have been doing well for about 10 months now using Valacyclovir and JOH. I am sticking with it as I can’t afford to tiptoe on the edge and risk having more “episodes”. Keep us posted and good luck.
Im deffo so much better on this regieme but hearing isnt getting any better tinitus comes and goes still a improvement on its worst! vertigo attacks ive had about one since they went into remission which is also huge progress i cant see me ever coming off as the alternative seems very scary
Without going back I forget how much antiviral your taking per day. If you are under 3 grams per day you could up the dose. Either way you should stay the course.