Jan 27th 2013 was 3 years I started acyclovir and Jan 25th 2013 was my last vertigo attack from Meniere's, so far. Its still a miracle to me. I do still have slight tinnitus, and do need to increase my dose now and then. But what a difference these 3 years has made in my life. The burden of constantly fearing I will get an attack every time I go out or have a future event or party to attend is almost a memory. Certain things do remind me I still have Meniere's and that is when my fear comes back, but I take another dose and within the hour I feel completely balanced again and my worries dissipate. I consider myself extremely lucky that acyclovir works so well for me after having the disease for 50 years. I wish it worked as well for us all. I hope everyone finds their way of getting symptoms relief in this New Year and better yet they find a cure and not just symptom suppression, for all.
Congratulations and thanks for sharing your success story Vicki. Many of us are still looking for answers and hearing success stories from people like you with AVs or JOH with supplements or Bulldog with his Laby gives me hope that I will find my answer someday also!
Congrats on 3 years! that is so awesome. And hearing your success and others is what gave me hope when I was at my lowest. So thank you for sharing!
Vicki, you were the one of the people who convinced me to try it. I can't believe how my life has changed. Thank you for posting here.
Thank you nicmger I am glad it helps! Scott it is good to hear that I and others have helped you. And thrilled to hear how well you are doing!!
Congratulations! It made me feel really happy! One question Viki, how long did it take for acyclovir to kick in and see the results? I have been taking AV for a week now and I think I am beginning to see changes but not completely sure it's due to this medication or just pure coincidence .
Marta, give it some time. Most of us didn't see max results for several months. Be sure to stay at the 3000 mg dose until you see relief. Then reduce slowly to find your maintenance dose.
Thank you Marta For me I saw results quickly, but many do not and I agree with Scott, you need to give it enough time. As long as you are seeing changes/improvement that's a great sign. Some get worse before better which believe it or not is always a good sign. Don't decrease until vertigo attacks stop, if when you do decrease and any symptoms start returning, increase back up for a few weeks and try to decrease again. Sometimes it can take months before one can decrease w/o symptoms returning. The starting dose is 2400 mg for acyclovir, 3000 mg is for Valtrex or valacyclovir.
Marta, for me I saw improvement within the first month but requested to stay at the full load dose for an extra month before tapering down as I didnt think I was quite "there" yet. Definitely give it some time and don't get discouraged if there is two steps forward and one step back.
Thanks for the update Vicki. I've also been one of the lucky ones and have had great success on Valtrex. It's been a number of years that I've been on AVs and/or JOH regimen. This website is where I found my answer, I believe from a person named "Carribean"--I thank him often. I do have trouble finding my maintenance dose however, and this is a bit frustrating. I've reduced to 1.5 tablets and had to go back to full dose after ear fullness returned. I've tried 2 tablets with the same result. It usually takes me a while to get back to this point after a little backslide, but I do get here. I'm back on full dose, along with JOH and will try again to reduce down the road but all in all, I count my lucky stars. It's well worth the try. Thanks to you all who post your stories and challenges. We all learn something, no matter what your path.
It would be interesting to know what percentage of people get relief with Acyclovir. What percentage get relief with JOH? Obviously, I and everyone else would do anything for relief.
90% get relief from antivirals. This is backed by several doctors and centers reporting their stats. And keep in mind that this is 90% after all other remedies have failed. These are the difficult cases! Myself included. I responded to nothing else. There is no way to verify JOH success rate as it's based on personal anecdotes and subject to missing data (lots of people who don't find relief may not ever bother to report it). I do know that my doctor has tried it on about two dozen patients, with a 0% success rate. But some on here report relief, so it's worth a shot.
SO happy for you chinook and good to see you Dr. Gacek's paper says that each of us who respond to AV's need to find the maintenance dose that works, 800 mg of acyclovir or 1000 mg of val is not written in stone. A study that is in the forums DB that I had found awhile back, that supports a viral cause or at least a viral cause for symptoms cites multiple studies supporting a viral cause, it also states in it that the other 10% that do not get relief from AV's may have a mutated form of the virus and why the antivirals do not work. I do not know if this is true or not, but maybe people who do not respond to an antiviral may try the monolaurin or berberine. Also as jaypr stated in his thread if one is not having luck with antivirals to try avoiding MAV triggers, MM and MAV are so connected in some way it seems, it may help when an antiviral doesn't or even try an antifungal.
Thank you all for replying to my message! I am day 11 on acyclovir and today I am feeling fantastic! I do not remember when last I felt like this! As my acyclovir was purchased online, without a prescription ( my GP didn't want to hear about herpes and MD) I am listening to you with regard dosages as I cannot refer to my dosctor because he is an ignorant. I am taking 3000mg of acyclovir and I will continue for... a few months? I am also continuing JoO regimen and just in case no salt, caffeine etc in my diet. And today, if I continue feeling good, I am going to go for a walk, on my own, first in months! Can you imagine how happy I am?? have a wonderful day all!!! and thank you ;D .
Fantastic to hear! Marta, for acyclovir the starting dose is 2400mg not 3000mg, the dosing, decreasing, maintenance dose for acyclovir and valacylovir are different. for acyclovir its Dr Gacek says: 2400 mg 1600 mg 800 mg I did not follow that exactly. I went from 2400 mg to 1600 mg to 1200 mg to 800 mg It took me many many months before I could decrease from 1200mg to 800mg w/o symptoms returning.
I got it from this site: https://www.getdirectmeds.com/ The parcel arrived from India, New Delhi. Clearly, it is genuine medication as it is working on me
Viki , I am pasting in what I read in doctor Gacek's protocol: Discontinue all previous medical treatments; ensure that patients are cleared for normal renal and liver function; use acyclovir tabs 800 mg t.i.d. for 3 weeks and reexamine. If there is significant relief of vertigo, decrease to 800 mg b.i.d. for 3 weeks, then to 800 mg daily as a maintenance dose. If valacyclovir is selected (in those who fail to respond to acyclovir), use 1 g t.i.d. for 3 weeks with taper to b.i.d. for a further 3 weeks and then 1 g daily as a maintenance dose. The starting dose of acyclovir was given for a longer period (3 weeks) than that used for zoster because it was felt necessary to cross the blood-brain barrier to reach ganglion and satellite cells with virus.
You can tell I have a brain fog! I wrote 3000mg but I meant / thought 2400mg. I have just realised what mistake I made. Sorry Viki
