Hello, I was diagnosed with Meniere's by my ENT, but I use the term "diagnosed" very lightly as that is what he "thought" I had. I am now seeing an Immunologist who thinks there is a chance it is Auto-Immune Inner Ear Disease. He is sending me to a Meniere's specialist at a local research hospital to try and get a definitive diagnosis. My question in the meantime is I would like to start the JOH regimen (minus the Lysine) and I am just wondering if anyone has some thoughts on this. It seems there is a lot of confusion over both Meniere's and AIIED, and if I truly have Autimmune issues I am not sure if the regimen would help in any way. The symptoms are so similar I am hopeful the regimen would be beneficial even if I have Auto-immune Inner Ear Disease. Thanks!
Don’t get trapped in the words. Meniere’s is a label for a common set of symptoms of unknown cause. It is a “work in progress” diagnosis until all other known causes have been eliminated. If you are going to try JOH then why would you eliminate an important component? It is the one dealing with virus, which many believe to be the cause, whether primarily or secondarily. Until you have a firm diagnosis it would be an idea to try anti-virals as well because protection of hearing is reported by many who get in early enough.
Lysine is an anti viral supplement which is a serious part of JOH. Not sure why you want to exclude it.
Thanks, The Immunologist had a concern that if my immune system is already in overdrive I may want to hold off on the Lysine until seeing the specialist. I tried beginning the regimen two weeks ago, but only got as far as Lysine and I had a pretty strong reaction to it (hives mostly). I wanted to let that clear up, but planned on beginning the rest of the regimen today. I did start right in with 2500mg's, next time I'll ramp up. Thanks for the replies, I believe this is the first board I have ever posted on. Loosing your hearing definitely sucks beyond adequate description, but realizing other people are going through the same thing and still have things to offer is an awesome feeling.
What Yellow said. My hydrops is presumed to be the delayed side effect of acoustic neuroma surgery 10 years earlier because there is a known relationship. So, call it an immune response. Allergy shots did help. But what helped most quickly and dramatically was acyclovir. Go figure. They just dont know the whole picture yet. Based on my own experience, i think it must be a perfect storm of one thing making the ear vulnerable and a second or third thing is the coup de grace. Kep an open mind, be positive and know it may not be the first thing you try that fixes it but there is a good chance you will find something that helps.