I posted this elsewhere but see it has value here. 95% treated. No alcohol caffeine or chocolate and low sodium. I went on the JOH routine and received some good results. Wanting more, I started acyclovir and that produced better results. Here is the next rung up the ladder: lysine ,C, and Acyclovir are good at suppressing the replication or supporting immunity but not necessarily killing the virus. I am now on Monolaurin 3 grams a day to start along with Essiaca tea and BHT to kill the virus. Good results so far (3 weeks) with some herxeimer (die off). Tinnitus already down 50% on average. This protocol is almost never reported on. Would love to see if any of you have heard of it or tried it. I will get virals tested each year to see levels.
Thank you all who have posted here. Since episodes of MD have been on a 6-week cycle since recent onset, I am thinking that there's at least a viral component (even if it is more complicated than that). I tried valacyclovir, probably generic, and had a horrible reaction to it - physically and, of all things, emotionally. Has anyone else experienced side effects? My thought here is to either a) ask for the non-generic and/or b) reduce the dose.
Good morning. I have been on antivirals for almost two years now. I started with VAL(valtrex) and switched to ACY(famvir) about 1.5yrs ago. 500mg BID. Both of these meds are/were generic brands. But for the Valtrex the participants of this forum had suggestions about which manufacture to use and which to avoid. The most avoided manufacturer was Mylan. A lot of people had issues with this particular medication they produced. I have not had any ill effects from the antivirals....and would be hardpressed to want to give them up. Good luck. This is definitely a very rocky road we're on.
I have been on the JOH regimen for 3 months, and had immediate relief from vertigo and lessening of tinnitis when taking 500 mg of Lysine TID (I tried higher dosages and had side effects). I tried some of the other suggested supplements one week at a time, but had adverse effects from several of them. I've continued taking Vitamin C 500mg BID because the extended release caused problems also. (Writing this away of from home and listed my side effects on a log at home so don't have specifics). I've had severe vertigo episodes 4 different times over a 10 year span, and 2 of them ended up in ER visits that were very costly (still paying off second one). I lowered my salt level in food about 2 years ago to probably 1500mg/day, and saw good relief, but then had several moderate vertigo episodes so kept lowering. I noticed someone else had also gone on an essential "no salt" diet, so decided to start cooking all my own food (and reading 100's of labels to find low/no salt items). I've been only eating between 300-400mg of salt per day and have some great recipes for curried chicken with rice, spicy hamburgers, soups etc. The tinnitus which I experience as "blowing" in my ears was still at a 1/10-5/10 level though, and that's when I started the JOH regimen. I have a question: I am thinking of asking for the anti-virals from my doctor/PA, and showing them the article from Dr. Gacek. After reading the posts above, it sounds like anti-virals have lessened or eliminated the tinnitus which would be great. Does anyone know if going on anti-virals would enable me to start eating more salt again? I have to bring my food everywhere, and can only eat salads at restaurants with simple ingredients and plain olive oil and vinegar. I crave so many things, especially cheese, which is almost impossible to find with no salt. (I try not to eat more than 30-70mg within an hour span). Thanks for any advice you can give me - this site has been a life-saver for me! I'm relieved to be doing as well as I am, but the no salt issue makes life hard and many hours spent cooking everything I eat to take with me.
I personally found know improvement with low salt. I’ve been on antiviral for 3 years eating regular salt diet and typically live a fairly normal life.
Thanks for your reply Blakeh. Another question with the anti-vitals - have you had or heard of any side effects from long term use of the anti-virals? Also, which one are you taking?
Hi Hope4reliwf, I get blood test every 6 months, I have not had any issues. Antivirals have allowed me to live a normal life MOST of the time, it’s really about getting on one that works for you. It’s hard because I have gone through several brand changes my pharmacies. Some work, some do not.
I just reread what I wrote, let me clarify. Lowering salt did not help my Menieres. I eat salt regularly without issues. I
Hi Blakeh -- Could you please let me know what type of blood test you get? I'd like to have some kind of data around the impact of anti-virals, but I don't know what to ask for. I can say that my most recent hearing check showed some improvement after a steady decline over 2 years.
Hi Bewestbrook, I’ll have to ask my doctor, it’s his request that I get them every 6 months in order for him to subscribe the antivirals. I have not had my hearing tested again but it’s not good. I have had times where tinnitus and hearing improved but I’ve learned to live with that part. As long as I’m not nauseous all day and can live normal life I’m happy with that.
Hello Blakeh -- If you do get a chance to ask, I'd be very appreciative. Living a normal life is definitely the goal.
Wendy -- That's what I've read, that there are concerns about liver and/or kidney damage. I was also wondering, though, about testing somehow for the presence of a virus at all. Maybe it has something to do with the presence of anti-bodies? Right now, I'm just guessing there may be a viral aspect for what happens to me, given that episodes are on a predictable 6-week cycle, that the JofO regimen has helped and that anti-virals have really helped. Any thoughts there are much appreciated.
I am not on prescription antivirals, but the Lysine and Monolaurin has helped my symptoms, I am still upping my monolaurin to the 3 gm per day. The improvement with these supplements tells me that mine is probably viral, and I am also considering asking my doctor for antivirals. I also do B5/B6 which if I follow Benny Hill's timing suggestions for sodium intake seems to help with consuming a little higher sodium meal later in the day.
I definitely agree with the viral approach. It’s given me the ability to function, especially if I’m on the right manufacturer of antivirals, which I’m struggling with now. I’ve been on some duds that did not work.
Hi John: I have a new diagnosis and am following your information. I can't thank you enough for having this here for people. I have a significant hearing loss in both ears already and I am 51. I live in CT and decided to look up the physician from the research data. Dr. Steven Rauch from mass gen. In your opinion should I just go to this physician and skip the whole ENT thing near me?? I have seen him and of course he checked for acoustic neuromas first so I had to wait 2 months and have a severe attack before getting diagnosed. He put me on a water pill. I already have autoimmune disease still not sufficiently diagnosed (prob lupus) they just call it autoimmune arthritis now. Most of all the treatment and information I have learned on my own because of the western philosophy in medicine. I am wondering if it is worth while to take a trip to Boston... I also will be starting your regimen as soon as my stuff comes in. Kind Regards Katie
Katie, I appreciate your questions. But it would be quite inappropriate for me to render my particular perspectives as any sort of medical advice, inasmuch as I'm not a licensed medical professional, nor can I know the specific details of your condition(s). The treatment you experienced from the ENT was exactly mine, from my ENT (before I devised and successfully used my own regimen). Inasmuch as Meniere's presents a number of diverse, hazy symptoms, any of which might be caused by something else, the first thing the ENT does is start to rule out all that he can. I had the head scan, too, to rule out an acoustic neuroma. The good doctors are particularly wary of these, even though they are quite rare. In the few cases where the Meniere's-like symptoms are caused by the neoplastic (cancerous) tissues in the inner ear, and they are not detected or treated, all sorts of liability lawsuits can result. Hence, the initial scan. Do that first. Then, as every medical textbook on Meniere's dictates, start treatment with "LSD." Low salt intake, plus prescription of a diuretic. It has been classically presumed, absent contemporary evidence of a viral inflammation process, that Meniere's symptoms are caused by excessive accumulations of fluids in the inner ear, the hydrops condition. It is presumed (with no actual evidence I can find) that the fluids accumulate in the inner, to a certain degree, because of excess salt, sodium, in the diet. Hence, cut salt intake drastically. Then, it is presumed that if the kidneys can be induced to extract water from the blood, and excrete it as increased amounts of urine, the excess water in the inner ear will be reduced, and symptoms likewise. If the low-salt/diuretic (LSD) treatment brings relief, well and good. But clearly, it seldom does. After any sort of near-term relief, symptoms sooner or later re-appear. For the nonce, fluid levels in the inner ear might well have been reduced; but the viruses infecting and inflaming it have been unaffected. The viral inflammation continues, producing the symptoms. When those appear, the good physician will then render his or her next set of measures, which will be some sort of disablement of nerves sending anomalous messages to the brain, either by chemical or surgical disruption of the nerves. Or, the physician may wish to surgically create a drainage hole, to allow the excess fluids drain away before they cause symptoms. Nice idea, but expensive, open brain-like surgery; which in most cases fails after the drainage holes spontaneously heal shut. After that, only one conventional option. Surgically slice out the offending organ and tissues, the classic end-of-the-game labyrinthectomy. That always solves the Meniere's problem in the affected ear. It is destroyed, so aberrant messages can never be sent to the brain (nor can normal sound messages). No more Meniere's in that ear, nor any perception of sound. With few exceptions, those are treatment sequences most ENTs follow, as described in their med-school textbooks. When a patient off the street comes in and says she has a herpes virus in her inner ear that causes her Meniere's symptoms, the good doctor will just smile, knowing that this patient is just a dumb layperson. Simply, viruses don't cause Meniere's. Not a word of such in any classic medical textbook. To presume such goes against all good things medical. Unless the treating physician subscribes to the now rather well-established notion that the majority of Meniere's cases are, indeed, caused at their root by a herpes infection of the inner ear, there is no opportunity to try any of the various antiherpetic drugs. With all of that, you will have to decide which doctors to engage. I wish for you the very best. --John of Ohio
All those antivirals are similar except that acyclovir and its generic does not have the long acting property so it is important with acyclovir to spread it out through the day i was told by a doctor. I did and it worked for me.
Hi John I appreciate your reply. I am in the process of searching for a doctor now that will be on board with this protocol. I work in healthcare, so I am fully aware that you would not risk giving medical advice. As you can see from my previous post, having autoimmune disease has already led me to seek knowledge on my own and treatment from other sources than western medicine. It is unfortunate that we live in that type of society in this day and age, but i digress. I am fortunate that the paper you have listed is a physician that is only 45-60 mins away from me and I have convinced my primary care physician to start me on the antiviral treatment for shingles. Fingers crossed I can get in to see this doctor within the next week. I thank you for helping people on this journey. Kind regards Katie
