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John of Ohio

JOH (John of Ohio) Regimen for Meniere's Disease details

  1. justsaiyan

    justsaiyan Member

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    Feb 23, 2018
    Hey,

    Sorry to barge in on this topic. I started having Menière when I was 16/17, which has been 15 years now. Back then I was taking the "standard" medications for it and I still don't know how or why, but it "dissapeared" on its own. It only left me with bad hearing in my one ear.

    Now many years later it seems to be back, it's too early to tell if it's my "bad" ear or if it went to my "good" ear. As the hearing tests are not pointing in one direction yet. Have only had two attacks so far.

    I started with the Lysine and then added the Lemon bioflavanoids. When I added the Vinpocetine I had my second attack, the Vinpocetine probably had nothing to do with the attack, but I'm a bit scared now. Do you think it's possible that I get relief when only on the Lysine + LBF + a Multivitamin, or is the Vinpocetine really important?

    I've had a full blood workup a year ago and it showed that I have the herpes virus in my body (turns out you got this forever, no matter when you got it?). Does this increase my odds of the regimen helping with my MD?

    Anyways, would be really grateful and a bit more at ease if someone or John could answer this for me.

    Thanks and have a nice day!
     
    • Optimistic Optimistic x 1
  2. John of Ohio

    John of Ohio Active Member

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    It appears (from over 200 regimen user responses) that my Meniere's treatment regimen is successful for about 85% of those with Meniere's. The regimen is centered on lysine, which is known to interfere with herpes virus replication; deactivating it.

    So, yes, there is a high chance the regimen will work when a herpes infection has been detected. Some such infections are difficult to detect, so the regimen can work where a herpes infection has not been detected.

    Vinpocetine, because it facilitates blood flow through the inner ear, in conjunction with the other regimen elements, has been very helpful, but is not absolutely required.

    --John of Ohio
     
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  3. Tony R

    Tony R New Member

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    Hi All
    First time poster, long time reader.I was diagnosed by an ENT with possibly having Meniere's in 2107 after a few episodes of low frequency hearing loss.This would occur 4-6 times per year with some tinnitus and a full feeling in the head.
    Come Christmas of 2021 I had 3 full blown attacks building up over days(Tinnitus and head fullness, hearing difficulties) then resulting in Vertigo for at least 3-4 hours where all I could do was lie on my bed.
    I saw my ENT again who put me on the diuretic Dithiazide.
    Then I had another good period until May 2021 with only a couple of milder attacks. Then from May to September about 3-4 episodes a month, about 20 in total.These started occurring within 3 days of my first Covid Vaccination. During this time my ENT specialist put me on Betahistine which has certainly helped with the vertigo.
    As I only have one ear that works due to an operation to remove an Acoustic Neuroma in 2007 I'm quite fearful of losing the hearing in my only ear.
    So I decided to give the JOH regime a try.My specialist was pretty dismissive of it and also wouldn't prescribe anti virals after telling me there was no evidence to suggest they work with Meniere's.
    I started the JOH regime all at once, a bit risky but I felt one worth taking.But admittedly I took the minimum recommended dosage of everything.I was only taking 2000mg of Lysine daily plus all the others.I had 2 straight months with absolutely no symptoms so was hopeful of change for the better.
    Then all hell broke lose at the end of January,I've had 6 seperate episodes in the last 20 days.Increased Tinnitus, head fullness and hearing difficulty but luckily no Vertigo.The Episodes sometimes last one day, sometimes 2 days and I had one just 12 hours long.After reading the JOH regime again and looking through some posts on this forum I increased the Lysine to 3000mg per day as well as increasing the other supplements to their recommended maximum dosage per the JOH paper.
    I'm also on a low sodium diet and try to eat simple good quality food largely coked at home.
    There is quite a few things going on at the moment with the sale of my property (farm) which has been in the family for over 60 years and purchasing another smaller property where I plan to move too in the next month or so.I'm sure some of this stress is a contributing factor.
    Anyway I just wanted to thank JOH for the effort in putting together his protocol and everyone who posts on this forum.It has helped me get through some pretty shitty times.I read that often things get worse before improving with the JOH regime so I'm hoping that is the stage I'm at now.
    Many thanks
    Tony
     
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  4. John of Ohio

    John of Ohio Active Member

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    Tony,

    Thank YOU for posting your experiences with Meniere's in general, and specifically with my regimen. And, yes, what you've experienced with the regimen is rather typical. At some point at the start, often after several weeks or a month or so, symptoms finally begin to fade. All appears well. Then, as in your case, symptoms resume, just as bad as before the regimen.

    But just as you've done, it's important to persist with the regimen, and increase the lysine as you have. Persist. This can, finally, thoroughly suppress the virus and provide on-going symptomatic suppression. Keep us posted on your continuing progress.

    My best.

    --John of Ohio
     
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  5. EkkoMusic

    EkkoMusic Member

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    Jul 26, 2021
    Do we know the reason why this is typical? Is something external causing the virus to reactivate?
     
  6. John of Ohio

    John of Ohio Active Member

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    The "reactivation" of a herpes virus infection, following a period of suppression by lysine (or prescription antiherpetic drug) is a mystery. Not likely to be the sort of natural selection where antibiotics select for drug-resistance genes in pathogenic bacteria. But the phenomenon is quite common with the herpes viruses that cause Meniere's (in about 85% of Meniere's cases; for some, there are other non-viral causes).

    Fortunately, after the reactivation infection is finally suppressed, after a persisting period of lysine dosing, a second reactivation, with severe symptoms, is apparently quite rare. Never happened with me; don't know of it happening with others.

    But, of course, viruses are not living organisms. They can't be "killed." They aren't alive; are mere packets of DNA or RNA that can hijack the protein synthesis processes of cells, forcing those processes to make, replicate more viruses. That causes inflammation in the inner ear, which brings about the symptoms of Meniere's. But, apparently, after being infected with a herpes virus, there will always be inactive, residual viruses present; ready to reactivate if the immune system or stress (or whatever) allows such renewed viral activity.

    I've been free of Meniere's symptoms now for about 20 years. I no longer take any lysine; no need. But I take 7000IU of vitamin D-3. That strongly supports my immune system, which is now adept at destroying viruses. In those 20 years haven't had a cold or flu, either.

    --John of Ohio
     
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  7. EkkoMusic

    EkkoMusic Member

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    Typically, how long would you expect to see someone's period of being symptom-free before this first reactivation of symptoms?

    Again me wondering, so what was your timeframe between first becoming 'symptom-free', your 'second wave' of symptoms, and then becoming symptom-free again (presumably henceforth, 20 years going?)

    That's incredible that you are off Lysine. At what point, and given what circumstances, did you realize you could drop it?

    I also have been on 7.5k IUs of Vitamin D since starting 3G of Lysine a day two months ago. Still have symptoms though...

    For context, I became symptom-free last fall with 500mg 2/day of Famciclovir, but I experienced a reactivation of symptoms after a few months. I dropped the famciclovir because members of this forum believed my dose was too low and the virus developed resistance and suggested I wait two months to restart again on a higher dose (I've hopped on Lysine, OLE, Vitamin D, and other supplements in the meantime to no real improvement).

    I am planning to look into TMD and Upper Cervical Misalignment (just to rule them out), but since I responded so well to antivirals once I still suspect there's a viral component to my issues, and I hope something can bring the load down again if so.

    Thank you, JOH, as always for your knowledge that has helped me and so many throughout the years.
     
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  8. John of Ohio

    John of Ohio Active Member

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    1. How long would you expect to see someone's period of being symptom-free before this first reactivation of symptoms?

    Highly variable, and "reactivation" can be indistinct. One must merely persist. Results or changes don't happen overnight. A slow, often long process. Some, perhaps many, don't have "reactivations," remain persistently symptom-free. Others...? Well, that's the question, which requires persistence.

    2. What was your timeframe between first becoming 'symptom-free', your 'second wave' of symptoms, and then becoming symptom-free again (presumably henceforth, 20 years going?)

    All of that happened around the turn of the century. At the time I failed to keep detailed, daily notes. But as I recall, reappearance of symptoms happened in the second year of taking my regimen. It was moderate, and it finally faded; have been symptom-free since then. Lost the hearing in my left ear, it's gone. If only I could have started the regimen when symptoms first set in, but I hadn't devised it yet. Had to experiment on myself for a number of years.

    3. That's incredible that you are off Lysine. At what point, and given what circumstances, did you realize you could drop it?

    I stayed on the lysine for about three years after symptoms no longer appeared. Then, over about three months or so, slowly, incrementally reduced the daily dosages, or skipped some dosing days. At any moment was ready to resume lysine at any reappearance of symptoms. Haven't had any (perhaps because of the vitamin D, at 5000UIs at the start of it; along with 400 mg of magnesium each day, a vitamin D co-factor).

    --John of Ohio
     
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  9. EkkoMusic

    EkkoMusic Member

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    Doesn't this suggest burnout? Wouldn't that be the reason you are now symptom-free?

    (Sorry, I'm unsure what the state of your right ear has been).
     
  10. John of Ohio

    John of Ohio Active Member

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    "Burnout," whatever that might be has never been explained. What, exactly, burns out? There is no combustion in the inner ear.

    I'm symptom-free, all these years, because in that time there has been virtually no viral replication, no virus-caused inflammation in the inner ear that causes Meniere's symptoms.

    My left ear went permanently deaf, early on, when the hair cells there were destroyed by the inflammation caused by the then very active virus. Happened before I worked out my treatment regimen; which has saved, preserved the hearing in my right ear (thankfully).

    Of course, herpes viruses are still embedded in my body tissues. Viruses are not living organisms; just packets of DNA or RNA that when activated (when they are replicated by host cells) are able to rapidly reproduce and infect new cells and tissues. But, my immune system, supported by my vitamin D and other good nutrients, is able to chemically destroy any re-activating herpes viruses before they can cause any inflammation or symptoms. If I went off my vitamin D and the other vitamins, minerals, and supplements I take, Meniere's could re-emerge. The seed viruses are still inside me. But my properly-supported immune system suppresses them before they can cause any trouble.

    But I still keep a supply of lysine on my shelf. If any symptoms ever appear, I'll start dosing myself again with it, being careful, of course, to take the doses at least 20 minutes before or 2 hours after any food. If taken with food the lysine gets absorbed with the food as a plain dietary amino acid and doesn't accumulate adequately in the blood.

    --John of Ohio
     
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  11. EkkoMusic

    EkkoMusic Member

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    I believe the explanation is that the inner-ear becomes so deteriorated that the hearing and balance function are all but destroyed, such that there's little left to attack and cause inflammation and symptoms. A simple Google Scholar search of "Meniere's Disease Burnout" might yield some better thoughts.

    Ah, my mistake, the wording here confused me regarding the order of events—I thought that the left ear hearing loss occurred in the second year of taking the regimen. Now, I understand that this occurred before.

    What signs was your right ear showing that it was starting to go?
     
  12. John of Ohio

    John of Ohio Active Member

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    I never had any symptoms in my right ear, before, during, or after I devised and used my regimen. My hearing continues, 20 years later, monaurally. My preserved right ear hears normally.

    --John of Ohio
     
  13. EkkoMusic

    EkkoMusic Member

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    Wait I'm confused, then how could you know the regimen is working if your right ear has never had symptoms, and your left ear had already deteriorated?

    Sorry, just trying to piece this together!
     
  14. John of Ohio

    John of Ohio Active Member

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    Well, the regimen worked because after devising and taking it, my symptoms abated. Not the case for the several years before I took the regimen. I also know that the regimen works because I have specific records (emails, or online postings) from over 200 people with Meniere's who tried the regimen and got relief --- relief they previously failed to get with the standard medical treatment, "LSD," a low-salt and diuretic approach. My ENT put me on that when first diagnosed; it did nothing. That's when I discovered lysine's suppression of herpes virus activity (in cold sores), then experimented with it (and some other supplements, in the regimen) to finally bring relief.

    About 85% who have diligently tried my regimen have gained relief. For about 15% it doesn't work. Those most likely are cases caused by things other than a herpes virus infection.

    I've shared my detailed case list with ENTs. All names and contact info has been deleted, to protect the privacy of the people who contributed their experiences. I share this only with medical professionals, of course. But the accounts are rather dramatic.

    Frankly, my Meniere's treatment regimen should be the SOC, standard of care, for newly-presented Meniere's cases. But because it was devised by a layperson, and hasn't gone through detailed and expensive double-blind clinical trials, understandably, the medical profession generally discounts it.

    Of course, the same can be said of antiherpetic drugs. They, too, should be commonly used to treat Meniere's disease. Both my regimen and antiherpetic drugs have produced remarkable therapeutic successes; for a disease that is otherwise recalcitrant and untreatable, save for expensive and delicate and destructive surgeries. So often MDs and ENTs have to say to Meniere's patients, "Well, the low-salt and diuretic didn't work very well. You'll just have to learn to live with it. Next, let's do some nerve surgery. Next patient, please."

    --John of Ohio
     
  15. EkkoMusic

    EkkoMusic Member

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    What were your symptoms that ablated?
    (From the anecdotes of others, I believe left-ear vertigo could've "burned out" with the hearing, so I don't know if that's a reliable symptom to count. But how about something like left ear fullness?)

    Thanks for the reply!
     
  16. John of Ohio

    John of Ohio Active Member

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    Well, these symptoms regressed to utter absence: feeling of fullness in my left ear; loud tinnitus, and all forms of vertigo and dizziness. Simply, I didn't have Meniere's anymore.

    Of course, the regimen is not able to re-grow lost hair cells, so hearing in the left ear was not restored. But, as
    noted, I've been free of Meniere's symptoms now for almost 20 years.

    --John of Ohio
     
  17. AndresIbieta

    AndresIbieta New Member

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    Hi John,

    Did you experience noise sensitivity in your bad ear? And if the answer is yes, did the regimen help you to deal with it.
    Thanks!
     
  18. John of Ohio

    John of Ohio Active Member

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    No, simply lost noise (sound) sensitivity. Meniere's destroyed the hair (sound sensing) cells in my left ear. Nothing can grow those back; will remain deaf in my left ear. But the regimen prevented the disease from advancing into my right ear; am able to hear normally with it.

    --John of Ohio
     
  19. Tony R

    Tony R New Member

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    Good Evening from Rutherglen, Victoria Australia.
    I wanted to add a brief update since my previous post on this thread dated 17th Feb 2022.
    To be honest February,March and so far April have been pretty tough Meniere's wise. 7 or 8 episodes per month at the moment with probably the worst being last week where I had continuous symptoms for about 4 days.
    Luckily no real bad vertigo but lots of headaches and nausea, which is a bit of a new phenomena.Add in the tinnitus, head fullness, hearing difficulties and brain fog and I'm starting to really struggle.
    So regarding the JOH Regime I'm coming up to 6 months since I started taking the supplements.I was initially taking 2000mg Lysine but since middle of February 3000mg.I take all the others at their maximum recommended dosages according to the JOH regime paper.
    I'm starting to wonder if I'm going to be one of the unlucky people whom it doesn't help?After the initial 2 excellent months I had at when I commenced the regime the last 3 months have been honestly horrible.
    Just wondering how long I should persist? I'm aware that it's quite common for symptoms to get worse before improving but am questioning how long the getting worse part is ? I don't want to come across negative about the regime and am very thankful to John for his efforts and it's really great to have a direction and something to give a red hot go.Any guidance appreciated and I hope you're all keeping well.
    Cheers Tony.
     
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  20. Donamo

    Donamo Active Member

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    Hey Tony - You are definitely not having a lot of fun. I would keep up the JOH regimen, it can't hurt and should help, but I would say it is not enough. Have you investigated diet? I believe there are food type triggers, such as MSG. Also Arginine which is in nuts is loved by viruses.

    Get the Heal Your Headache book Amazon - Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Headaches: David Buchholz, Stephen G. Reich: 9780761125662: Books Diet makes a difference and I'm not referring to low salt.

    I haven't read your history, but have you tried Anti-Virals?

    The very first success that I had, which was very encouraging at the time, was with MEGA MEGA vitamin C - it stopped my attacks for a while and showed me that I could have some influence on this disease.

    Try everything!

    don
     

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