I recently have been told that my MD is now bilateral. I was first diagnosed with MD in my right ear in 2006. Initially I had several vertigo attacks and the hearing in my right ear was very poor. I was told to go on a low sodium diet and prescribed a diuretic that I have been taking daily since 2006. I also use diazepam for the vertigo as necessary and take Claritin daily. At the time I was diagnosed with MD I lived in Kansas. Sometime in 2007 I started getting allergy shots as the doctor there and I both thought there might be a connection with the MD. I stayed on those shots until early 2009. I was not yet at the Maintenance level when I went off the shots, but we were moving to Iowa and the doctor was concerned about mailing the vials to me that I needed for the shots. We mutually agreed that I could go off the shots, as I had not had a vertigo spell in a long time. In December 2011 we moved to Wisconsin. Shortly before that move the vertigo spells game back (after going at least 3 years without a spell). The spells were very frequent and made it hard for me to work. Luckily there is a very good MD doctor in Madison. To help with my vertigo he performed surgery in April 2012 to insert an Endolymphatic Shunt. This worked for awhile, but the vertigo spells came back. In the fall of 2012 I had a Gentamicin injection (it was a low dose and we could still do more if necessary). I had one more injection in 2013. Since then I have not had any vertigo spells. The earing in my right ear is still extremely poor, but my hearing didn't change after either injection. Late last year I purchase a bicros hearing aid. That helps me at lot a work, but is almost a hindrance in public places. In December (2014) I started having hearing problems in my left ear. The hearing fluctuates a lot and many days I wouldn't be able to hear if I didn't have the bicros hearing aid. I have started keeping a daily diary to see if I can determine possible triggers. The hearing does improve after exercise and seems to be impacted by weather and rest (e.g. the last couple of weeks by hearing has deteriorated by Friday). My doctor wants to be carful about preserving the hearing in my right ear. I do plan to talk to him again about the merits of starting the allergy shots. He seems skeptical about the connection. He is open to me trying supplements. I know that JOH has a recommended regimen, but there are two other individuals who both have websites devoted to MD. They also have recommendations for supplements. When I contacted them for more information, they both are recommending products manufactured by USANA. I am curious about anyone's experiences with supplements and which regimen they would recommend.
TG....Hi there and I'm sorry to hear what you have been through. If you read the threads on here, you will notice that antivirals and supplements seem to work for most. I personally take USANA products and they are really good quality. It is my understanding that these are pharmaceutical grade products and are very potent. The one thing I will tell you is that it seems that most of us didn't respond quickly to any of the protocols on here and it does take time and persistence. The easiest thing for you to do right now would be to get on the John of Ohio (JOH) regimen right away. Until you can get a prescription for antivirals (Acyclovir, Valacyclovir, or Famvir are the favorites), pay special attention to the Lysine on JOH. Here is the link to JOH: http://www.zoominternet.net/~kcshop/JOH.PDF Here's another link with additional information you will need to become familiar with. http://menieres.org/talk/index.php?topic=557.msg18219#msg18219 Others on here will probably have more to add or just simply search and read other threads. You will find a lot of great information here and if you have questions, just ask.
I appreciate the suggestion. I am actually working with my nephew who runs a nutrition store in St. Louis. He reviewed the recommended USANA products and JOH's regimen. Based (mostly on the USAA regimen) he was developed a regimen for me using products that he would recommend. He felt that the USANA product was a "older recipe". I have an appointment with my doctor later in February. I plan to talk to him about the antivirals. He is aware that I am trying the supplements. I am lucky that with my MD becoming bilateral, I so far haven't had any vertigo spells. I do have days where my hearing is so bad that I am basically deaf. My hearing is also very distorted. I am keeping a daily diary to see if I can figure out a trigger.
Frankly, there is no comparison between my regimen and the USANA one. USANA is far more expensive, but if it gave greater results, many would be open to that. But the real issue is that it does not directly suppress herpes viruses, the root cause of most Meniere's cases. It has no lysine or other antherpetic componant. A severe problem. The vinpocetine and other circulation-enhancing components in my regimen are highly beneficial. The two vitamins (E and C) strongly support immune system suppression of herpes activity. Many are impressed with the supposed "purity" of USANA's products. If one believes efficacy is generated by purity (as opposed to physiological process), pay the higher dollars and go with USANA. My personal opinion --- backed by many dozens of positive regimen-user accounts I've compiled --- is that my regimen is exceptionally good. And when combined with prescription antiherpetics per the Gacek proticol, there is no better Meniere's treatment option. Gacek's protacol is here: http://menieres.org/talk/index.php?topic=557.0 My regimen is here: http://www.zoominternet.net/~kcshop/JOH.pdf --John of Ohio
John, I appreciate the information. I have actually been aware of your regimen for at least the last couple of years. I started on the Lindberg Lemon Bioflavonoid Complex, the Vinpocetine & the Ginkgo in roughly early 2013, I was also continued taking a multi-vitamin. I then asked my doctor about the value of supplements. He didn't want me taking the Ginkgo because it could cause bleeding and increase chance of stroke. He was ok with me taking a Lipo-Flavonoid. After talking to him I stopped the Ginkgo and Vinpocetine, but stayed on the Lindberg Lemon Bioflavonoid (although I realize that my doctor was thinking of Lipo-Flavanoid). I have had Meniere's in my right ear since 2006. It went into "remission for 3+ years between early 2008 and late 2011. It came back in late 2011 and I really started having significant problems with vertigo spells. During one 3 week period my doctor was having me take diazapem twice a day to help prevent vertigo and help me make it through the day at work. That was rough because I also cut out the coffee and a side effect of diazepam is drowsiness. Anyhow long story short - I had Endolymphatic sac surgery in early 2012. That help for a while and even help improve my hearing for a while. Unfortunately the vertigo came back even worse so my doctor recommended Gentamicin treatments. I knew it might reduce the already poor hearing in my right ear (23% understanding) and asked him about the chance of my Meniere's going bilateral. He said he felt that chance was very remote, so I decided to proceed with the treatments. We did two treatments with no change to my hearing. The vertigo stopped after the 2nd treatment (Spring of 2013). I have not had a vertigo spell since, I also have continued taking the Lindberg Lemon Bioflavonoid supplement. In fact I had been taking for a few months by the time of the second Gentamicin treatment. So who knows the Lindberg Lemon Bioflavonoid may have had as much to do the cessation of the Vertigo as the Gentamicin. I ran out of the Lindberg product this fall and had to wait until wait December to get my re-order. In early December I woke up with significant hearing lost in my left ear. Testing pointed to bilateral Meniere's. I have had two hearing tests so far with my hearing slightly improved. I have good and bad days. I have created a spreadsheet to track diet, exercise, weather, amount of sleep & stressful events. So far sleep and weather seem to have an impact on my hearing. I can't get in to see my doctor until late February. He has called me twice and has told me that typically Meniere's is not as bad in the second ear. We also discuss supplements. I described the USANA regimen in general, since I did not know the specific products at the time I last spoke with the Doctor. He was ok with me taking a strong multivitamin and now ok with the Ginkgo since I am not on any blood thinners. As I mentioned in an earlier post, I am working with my nephew since he has a nutrition store and is very high on the benefits of supplements. I also sent him your pdf file describing your regimen. So in putting a regimen together for me he had yours in mind. My nephew doesn't think I need the Lindberg product as he feels that some of the ingredients in his regimen provide the same benefits as the Lindberg product. I have started taking the Lysine since my wife gets cold sores and has herpes simplex. I have never had any cold sores, but we have been married over 30 years. From what I understand she could have easily passed it to me in the last 30+ years. I have never had a cold sore, but it is also my understanding that herpes simplex would not necessarily cause a cold sore. I also feel that allergies might be a trigger for me. I have significant allergy problems all my life and was on allergy shots from late 2007 - early 2009. As I mentioned above my Meniere's went in remission in early 2008. I stopped the allergy shots in early 2009 because we moved and my original Menier's doctor felt that I could stop, but I wasn't at a maintenance level. From what I understand if you don't get to a maintenance level eventually the benefits of the shots wear off. I gave you a lot of background and hopefully not too much. I am close to the point where I will need to re-order some of the supplements from my nephew. This also gives me the option to stop his and go on yours. I did noticed that your regimen doesn't appear to contain a multivitamin. What are your thoughts on my current approach (i.e. basically my nephew is looking at the underlying ingredients in the USANA regimen and yours and putting together a regimen that enhances circulation, fights inflammation & compacts herpes)?
Most importantly --- if you are not --- get on the 3000mg/day lysine dosage recommendation in the regimen (http://www.zoominternet.net/~kcshop/JOH.pdf ). Nothing else in my regimen, nor anything in the USANA regimen, directly suppresses herpes virus activity, except for the high-dose (3000 mg) lysine. A strong mulitivitamin, particularly with high B vitamins (not mere RDA) can be very helpful in supporting the immune system. Take also 5000 IU of vitamin D-3 each day, as this also strongly supports immune function. Cold sores are caused by herpes viruses, as are most cases of Meniere's. But many or most with Meniere's simply have never had a cold sore. Don't be quick to connect the two. They are mostly unrelated, as the herpes viruses that cause Meniere's seldom produce cold sores. I'm not at all impressed with the USANA stuff. Lots of expense for some very standard supplements --- most of which do not directly suppress MM symptoms. The best approach would be to get back on to the full regimen, along with a prescription of an antiherpetic, to keep the disease out of your yet good ear. Info on doing this here: http://menieres.org/talk/index.php?topic=557.0 Keep us posted on your progress. --John of Ohio