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Subsitutions/Eliminations in JOH

Discussion in 'Your Living Room' started by Patricia Idaho, Nov 29, 2021.

  1. Patricia Idaho

    Patricia Idaho New Member

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    Nov 23, 2021
    I have had Meniere's for about 50 years and am now about 70 years old. I've had a lot of remissions in my lifetime. My right ear has been gone for many years. At the beginning of 2017 the disease started attacking the hearing in my left ear, and I got a hearing aid for that ear. When my ears are bad (lowered volume and distortion) I have a hard time functioning even with my hearing aid because of the distortion. I had to give up playing the clarinet because of the pitch distortion. I've had a good 18 months, but now I am again having a spell which started with dizziness. For years I have taken daily doses of betahistine dihydrochloride (compounded) and a diuretic. I have ordered most of the JOH regimen and am wondering if I should continue the two medications I already take along with the JOH regimen of pills. The betahistine is expensive; could I substitute some of the new pills for the betahistine? I take a thyroid pill. Can I take that pill along with the L-Lysine? Also, I have never had a cold sore. Is it still possible for me to have a herpes virus in my system? Another random comment: Taking Prednisone has always been a waste of time.
     
  2. Brian

    Brian Member

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    Betahistine is at best a placebo
     
  3. teesdale

    teesdale Active Member

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    Patricia, you've had quite the long battle with this beast and you serve as an inspiration to all of us to continue to persevere.

    I have bounced back and forth on treatments but the most effective cocktail for me seems to be: Valacylovir (1000mg twice per day), Complex Vitamin C (2000mg twice per day), Diuretic, Vitamin E (650mg twice per day), Vitamin D3 (2000iu twice per day), L-Lyzine (1000mg before bed, 1000mg immediately in morning). Looking at JonBubo's post above I may add the Beta Glucans in. I'm 62 and I get regular blood work and have had no issues.

    If you start the Valacylovir treatment I recommend 3000mg per day in the beginning. You may want to try a cleansing diet (Whole30 is a good one) in which you may, if you follow the plan strictly, identify specific foods that may be contributing to your symptoms.

    God bless you in keeping up the good fight.
     
  4. Patricia Idaho

    Patricia Idaho New Member

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    I've never known if the betahistine helped. Thanks.
    I really would like to get off my diuretic, but I'm scared to. It seems like if I don't take it my hears clog up. However, my kidney numbers are not looking very good right now, and I'm supposed to be drinking more water to see if I can correct this. Thanks for your input.
     
  5. Patricia Idaho

    Patricia Idaho New Member

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    I do have an appointment with my doctor in January. In the meantime, I will start the regimen. The pills have arrived and I took my first lysine this morning. Thanks so much.
     
  6. Patricia Idaho

    Patricia Idaho New Member

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    Nov 23, 2021
    THANK YOU!
     
  7. Technophile

    Technophile New Member

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    Jan 28, 2022
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    For years I was prescribed various medicines, diets, etc, both before and after diagnosis. I had nearly constant tinnitus, vertigo attacks and subsequent hearing loss more and more frequently. My ENT suggested I try betahistine, cautiously saying it helps some and not others. Therefore, my expectations were low that this would do anything.
    Darned if I haven't been symptom free (except for the hearing loss, which is permanent) for a year now. In fact, I self-lowered the dose from 3x8mg/day to 2x8mg/day with no relapse. If it is a placebo, I'll take it. It would be interesting to get a compounding pharmacist to create identical tablets with a neutral compound, have my wife swap the exact number of pills left in a bottle at some point, and see if my symptoms return. That's as close as I could come to a legit self-experiment. But frankly, I'm convinced there is some mechanism that works - for some. Maybe that exists somewhere in the vast ocean of pharmacological and biochemical knowledge we have yet to learn.
     
    • Like Like x 1
  8. IvanNew

    IvanNew Active Member

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    -Drinking plenty of water and dandelion tea has the same effect as a diuretic.

    -Antivirals or/and lysine and vitamin C for possible viral cause.

    -Sertraline to reduce cortisol levels if your Meniere's is aggravated or caused by stress.

    -Vitamin D: Both for the viral cause and for a possible autoimmune disease or allergies.

    -Corticosteroids: They can work temporarily by reducing inflammation, in my case they did.

    -Allergies: Checking for and treating any allergies can help.
     
  9. yellowboy

    yellowboy Active Member

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    Don't know where you get your bad information at - I used to have 2 vertigo attacks a week, on Betrahistine I have 1 every 3 months
     
    • Like Like x 2
  10. arcticblueice

    arcticblueice Member

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    When I first started using Betahistine in 2017 it took about 3 weeks for it to reduce my vertigo from every two days to every couple of months and after 3 years using 3 x 24mg along with the JOH regimen I have not experienced any dizziness or vertigo for 18+ months by the grace of God. I did try to wean myself off of the betahistine in mid 2018 and only use the JOH regimen but the dizziness returned about every two days to the point where I could not work or drive at times and my Menieres became bilateral. I currently use 3x24mg and the JOH regimen. I am in my 50’s and work full time. This wretched disease nearly destroyed my life but my symptoms have stabilised now. I lost 90% of the hearing in one ear and 25% in the other but my last two annual hearing tests were nearly identical so I am not experiencing any additional hearing loss and I am very grateful for that.
    Betahistine works really well for my bilateral MD.
     

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