Hello, I have visited this forum on an off for the past few months, but never joined. I was diagnosed with unilateral Ménière's last November. I have suffered from it for over 3 years. The first few years had some serious attacks but also had some long remissions. Since last fall the frequency of attacks increased. I was prescribed prednisone and triamterene-hydrochlorothiazide (diuretic). I also switched to a low sodium, caffeine free diet. As many of you probably guessed and also experienced, that did little for my symptoms. I'm having a particularly tough week and came back to this forum. Mainly because misery loves company . I have decided to try the "John of Ohio" regimen. I know John is on this forum and wanted to say THANK YOU for not only fighting against with this illness, but sharing what has worked for you. Even if it doesn't work for me, it gives me more hope that the medical community has in regards to MM, and that alone is appreciated. I also took the advice of many on this forum, and sent a request to my ENT to start acyclovir. He actually agreed to do it. Hopefully I will be able to pick it up in the next couple of days. Question.... Should I wait on the JOH regimen until after the acyclovir drops to the maintenance dose, or follow the JOH regimen and simply replace L-Lysine with Acyclovir? Also, my ENT didn't make mention of whether I should continue the diuretic while on acyclovir. Are there any concerns in this area? Thanks, Dan
There is no good reason not to go forward with both the regimen (lysine, etc. posted here: http://www.zoominternet.net/~kcshop/JOH.pdf) right along with prescribed antherpetics (http://menieres.org/talk/index.php?topic=557.0). Go after this disease with everything available. --John of Ohio
Thanks John. That's what I will do. Sorry for the snafu on the subject, I meant to type JOH not DOH...must have been a brain fog...Homer moment.
Hey there, Ask your doc if you can do valacyclovir. Dr. Gacek reports that it's more effective. Also, many here have found some genetics as less effective than others, so if you can get name brand, I'd advise that.
Thanks for the tip Scott. I'm in a tough spot. I forwarded the links on the research and my doc agreed to do the acyclovir. I honestly don't feel justified in asking him to looking into another drug and changing it at this point. Is the success rate really that dramatically different? I understand that valacyclovir worked better for you, but I also understand that acyclovir was affective for others. I guess I am thinking I will try one and if that doesn't work, I will try the other. As for the generics vs name brand...what are the name brands that people have had the best results with? Thanks, Dan
You don't feel justified asking your doctor for better meds? Seriously? Dude, no offense, but YOU are paying HIM for a service. You do whatever it takes to get better. If he won't help you, then fire him and find someone who will. Any doctor can script this. Take charge.
Thanks. I do appreciate the advice. If the first script doesn't work, I will ask to switch to valacyclovir and insist on a name brand (Valtrex?). I have already scheduled a follow up.