How have you received relief from MD symptoms? Are there any of you who are not on antivirals but have had success in minimizing symptoms? Does JOH regimen work without antivirals? What about just plain watching your sodium intake and drinking lots of water? Has tubes, chiropractic alone, injections, TMJ treatments helped? How long before you had a set back? Have any of you "burned out"? I would love to know what your success stories are.
Hi, I am a newbie. I just wanted to report my (so far) success story. I have been on the joh regime for 8 weeks; very strictly incorporating all the elements, and very low salt diet for 9 weeks (who would have guessed 'low salt' was virtually impossible??!!). I was diagnosed with Menieres after 6 months of absolute misery after being told I had positional vertigo and it would go away soon. (The Epley manoevre was not helpful). As my ENT specialist was no help I turned to the internet and thank goodness stumbled across John of Ohio. I got straight on it, starting everything as soon a I got hold of it. I saw some improvement within a week or so, and now after 8 weeks I am a LOT better. Not 100% but I can a least lead a relatively normal life like this, just with limitations. I am definitely going to continue. Thank you so much John of Ohio, I think you have saved my life. I can't say how much my improvement is due to the low salt, but I believe the combination of that and the regime has done it. I also take Betahistine 16mg x 3 daily, and Dramamine at night. (With very little relief before I started the regime.)I am also coeliac so already had a gluten free diet. I hope this little success story will encourage others to try the joh regime. This is a great site and it has helped me so much, thanks everyone!
JOH did nothing for me. I honestly wonder whether it really works, but a few people here have reported success, so it's worth a try. I tried everything else as well except surgery. Antivirals saved my life. I believe i would have committed suicide otherwise (maybe after trying a double laby).
Scott, How many grams of lysine did you take each day, for how long (without food?)? Unfortunately, there is posted on the Internet an old version of the JOH regimen from several years ago that doesn't use an effective amount of lysine. Originally, it appeared that 1500 mg per day would work. For many, it did; but for others it did not. Now that the lysine dosage is 3000 mg, successes have markedly improved. Also, the regimen is not usually successful without the other components, too. They facilitate symptomatic relief and healing of damaged inner ear tissues. Taking just the lysine is insufficient. Let me know your details. If appropriate and accurate, I'll add your case to my list of "unsuccessfuls." With over 260 reports from regimen users, slightly over 88% report significant or complete symptomatic relief. The regimen works --- but like everything else with this disease, not for everyone, sadly. --John of Ohio
Scott, How many grams of lysine did you take each day, for how long (without food?)? Unfortunately, there is posted on the Internet an old version of the JOH regimen from several years ago that doesn't use an effective amount of lysine. Originally, it appeared that 1500 mg per day would work. For many, it did; but for others it did not. Now that the lysine dosage is 3000 mg, successes have markedly improved. Also, the regimen is not usually successful without the other components, too. They facilitate symptomatic relief and healing of damaged inner ear tissues. Let me know your details. If appropriate and accurate, I'll add your case to my list of "unsuccessfuls." With over 250 reports from regimen users, slightly over 88% report significant or complete symptomatic relief. The regimen works --- but like everything else with this disease, not for everyone, sadly. --John of Ohio
I would have tried the anti virals but my doctor would not consider it and I could not find a source to buy it myself (in UK). it is interesting that the joh regime does not help everyone, but it is certainly worth a try..... I would have done almost ANYTHING to get even a tiny bit of normality back. Perhaps in conjunction with a very strict low salt diet....though I admit that is very difficult to do.
Full regimen with 3000 mg for 5 months. Nothing. 3000 mg of valtrex for 3 weeks. Complete recovery. You do the math. My doctor also said she had dozens of patients show no response to your regimen, and quit advising it because none of them got better. She now does antivirals.
I had the Laby dec 11 2011 and now I am completely cured. I wish I had decided on the laby years earlier because I would not have suffered as much. I did try everything out there from the JOH to shunt surgery . Now before someone says that I should not discourage our brothers and sisters from all the various treatments, I want everyone to think for themselves and try whatever they feel lead to try. I just would not waist precious years when I know the Laby will fix single sided menieres and can be used for bilateral menieres when all else fails. And yes we do know people that have had VNS in both ears.
and also hurricaneone's quote - I've already thought about this and I'm probably at Stage 1 in MD. I know I will try everything I possibly can before doing a Laby, but I also know I'm not going to wait forever. I'm 55 years old and I don't have forever. My husband has Parkinsons Disease and I'm supposed to be taking care of him, and not the other way around. Plus, I would rather have a Laby when I'm not elderly and I'm healthier.
I was wondering if they could do both ears. I don't have bilateral, but there's always that chance that some day I may. Good to know there are options.
I was symptom free for a little over 10 months by following a low sodium diet, making sure I got enough sleep and I use a Meniette device ( requiring a tube in my ear)..... Just recently after close to 11 months I had two attacks - but really my own doing ( not being vigilant about my diet around the holidays and working an insane amount of hours getting ready for year end - plus the holidays - I def was NOT taking care of myself)..... It has been a bit of a struggle getting back into my routine but I am back to watching my sodium and trying to get enough sleep everyday and be consistent with bedtimes and waking times.... the brain fog is getting less and my energy is returning. I am not opposed to AV's by any means - nor is my Dr -- If I think I need them I will absolutely try them.
Dr. apt yesterday with ENT - had 2nd hearing test (1st one was 2 years ago when first diagnosed) - dr. first got some wax (really gross wax) from my ear. It was BLACK & gross - I asked him, "gosh Dr. is that normal?" and he replied, "no, but I've seen worse." Hearing test came better than the 1st time on one part understanding "words" - (overall hearing was the same) he was very pleased with this, that it hadn't gotten worse. (personally I think it was because he cleaned all that gunk outta my ear) He said to continue doing what I'm doing (which he knows I'm doing the John of Ohio regimen) and to continue the meds - water pill - potassium and valium.
I started acyclovir, JOH and how to heal your headache triggers in diet, cut down working from full time to part time to help relieve stress, I did get some relief, but after 3 months I was still having frequent vertigo and MAV symptoms, as I need and want to work part time, I gave in and purchased a Meniett Device prescribed to me by an OTO. I went 2 weeks symptom free then had a gigantic vertigo attack that hit me in a matter of one second, it lasted 4 hours, I had also eaten popcorn the night before, and jumped on my elliptical machine the next morning for 30 minutes after not being on it for a few months, I think the popcorn with salt and the exercise were too much, also a cold front moved in. I haven't had one (vertigo) now for 17 days, my brain also seems less foggy, my hearing is better most of the time, I have survived 2 cold fronts that moved in without vertigo, some increased tinnitus with the cold front, I still take two acyclovir a day, follow JOH and watch my triggers. I pray my success continues. The Meniett device is expensive, if it doesn't help in 6 weeks it can be returned with full refund. My 6 weeks is not up yet but I am sure I will keep it! Going 14 days and now 17 days is worth it and it gave me my life back. I still get tired easy, but even that seems to have improved.
He Nickyshick, I am glad to see someone else is using the Menniet device! When I saw the 10 months it scared me a little to think the vertigo may come back, but I think it means we still have to watch what triggers vertigo, the device is not healing, only managing symptoms! But I feel it is managing my symptoms well so far.