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John Of Ohio -beginning the regimen

Discussion in 'Your Living Room' started by Leonora, Oct 16, 2019.

  1. Leonora

    Leonora New Member

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    I was diagnosed with BPPV in 2001 and satisfactorily treated a few times for that with the Epley. Looking back, I realize now that I had residual symptoms of dizziness that took weeks to lessen, which I assumed were related to the BPPV but were perhaps the beginning of Meniere's. Fast forward to this summer when I had a full blown vertigo attack (vomitting, severe spinning, unable to walk or speak) and was taken to ER. I assumed again it was BPPV but it did not respond to physical therapy. (They did MRI and ruled out stroke and any other neurological issues) Another attack over Labor Day weekend and yet another two weeks ago. Screaming tinnitus, unable to lie down due to waves of vertigo, upset stomach, diarrhea, completely off balance to walk, etc. etc. Needless to say, it threw me into the pits of discouragement.

    It took weeks to get an appointment with ENT. SO, in the meantime, when I could sit at the computer screen, I researched. I found the John of Ohio regimen and read several more articles on the relationship of Meniere's and viruses and autoimmune. I have the herpes simplex virus and I have autoimmune reactions to severe stress. For me, it made sense to begin this regimen with the thought that, 1. It pertained to me and 2. What did I have to lose?

    Two weeks ago I immediately lowered my salt intake to 700-800mg/day and upped my water intake a lot by sipping water throughout the day. I also began B-5 and B-6 (along with the B-12, Vit. D, and Magnesium I already took daily for years) Last week I introduced 2000mg of L=Lysine/day divided into morning and afternoon. I plan to introduce the other vitamins recommended in the regimen at one each week.

    I also began treatment with an upper cervical chiropractor simply because all the stress was giving me neck pain and I have some old, ongoing issues there.

    The last four days have been the best I have felt in six weeks. I still have some vertigo and tinnitus (at a lower volume). I am able to maneuver my environment quicker and take walks. I still feel "off" but much better than where I was a week ago.

    I wanted to begin this documentation as a way to follow where this may lead. Also, I find the majority of what I read about Meniere's completely discouraging and depressing. So many folks are suffering in a horrible way. I know the causes of Meniere's are many and it's a difficult disease to manage but, if there are some regimens like this that work for some sufferers, then it's very important to share about it.

    Thank you John of Ohio- for sharing and giving some of us hope.
     
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  2. Onedayatatime

    Onedayatatime Active Member

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    Welcome and Good for you Leonora. Way to start getting after it Girl! We don't take no a$$ wuppin lighly on this here forum. We fight back. Also look into the MAV diet. It's another reasonably easy (OK not so easy), no cost way to eliminate a possible cause. Buchholz Heal Your Headache is a worthwhile book. It seems that after messing around for three years MAV is proving to be my issue and I never really had conventional headaches. No real headache pain.
     
    Last edited: Oct 16, 2019
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  3. Leonora

    Leonora New Member

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    Update: JOH regimen 4 weeks in. (+bennyhill vit B's + three vitamins I had already been taking)
    I added vitamins at a rate of 1 new one/week as JOH recommended. My current daily usage is as follows:
    3000mg L-Lysine/ 100mg B-6/ 125mg B-5/ 10mg Vinpocetine/ 1000mg Lemon Bioflavinoids/ 200mg Magnesium/ 2000IU D-3/ B-12 Folate. I sip water throughout the day totaling the equivalent of 4-5 bottles, keep salt intake under 1000mg, (around 800mg if possible), and I visit an upper cervical chiropractor 3x/week to begin. The chiro was something I added to make my neck and spine feel better and not necessarily part of a Meniere's treatment.

    The improvement I feel is encouraging if not amazing. Firstly, I feel better. Not just in relation to the vertigo but, overall I don't feel sick anymore. Sometimes we don't realize how poorly we felt until we feel better. I was feeling poorly for four months even between bouts of vertigo when I thought I was OK.

    Secondly, I have resumed most of my activities and hobbies such as gardening, walking outdoors, housework, cooking, and rug hooking. I even painted a room in our house! Three weeks ago I couldn't tilt my head to write a letter to my grandchildren and now I can think and write at the same time.

    There are still issues that remain: I still sleep in a recliner because I feel motion in my head when I lie down to sleep. My tinnitus is still there 99% of the time. It's at a lower volume but still runs at a 3-4 on a scale from 1-10. There was one day when I had no ringing in my right ear and it caused me to stop and marvel just for a moment. Then it came back : ( When I do physical tasks, I have to go slowly and take breaks. I still feel off balance if I move quickly or do too much. Painting the room gave me a headache on the first day because of all the head movement and bending over and looking up. I think it was good therapy to make myself move around like that, though, because on the second day it wasn't as bad. Low salt and water intake are a must. If I slip up on that, I feel it with more balance issues the next day.

    My goals: To sleep in bed again. To not have any balance issues or "swimmy" head. To not live in fear of another vertigo attack.

    I have an appointment on Nov.4th with a nuerotologist. I hope he is open-minded enough to discuss this anti-viral regimen and add an anti-viral prescription to the mix. I'd like to see this through as a first course of treatment before moving on to other forms of treatment, barring a change in symptoms of course.

    Biggest fear: When the hot weather returns next spring, will I fall back into sickness again?
     
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  4. wendy

    wendy Member

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    Way to go Lenora! This forum is a blessing for those of us who have felt hopeless in that there is nothing we can do with regards to our disease.
     
  5. Irishstu

    Irishstu Member

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    Leonora. Keep with the JON regime. I am on it now 3/4 months and have definitely seen a sustained lessening of my symptoms. It doesnt work for everyone, unfortunately, but if you are seeing results keep it going.
     
  6. Blakeh

    Blakeh Member

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    Glad to hear things are improving, Leonora. I appreciate you posting and giving the update.
     
  7. Onedayatatime

    Onedayatatime Active Member

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    My symptoms never seemed connected temperature. I did have a snow storm trigger a vertigo event one night while I was driving home. That was a bad night. Something about the snow in the headlights is all it took. Whammo.
     
  8. Leonora

    Leonora New Member

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    FINALLY had my appt. with the ENT yesterday. After all the testing, MRI's, etc. he said because I don't have hearing loss, I don't have Meniere's. I also do not currently have BPPV, (although that has come and gone for 18 years.) He threw out all kinds of possible diagnoses and gave me two websites to read so I could "educate" myself. He was totally against prescribing an antiviral and said there is no evidence that they have any benefit whatsoever. He suggested exercises for vestibular rehab. He threw out all kinds of ideas ie: stress, lack of good sleep, neck issues, migraines, and depression. It was left to me to decide what combination of these factors fit me. He was condescending in a polite way.

    Going into this appointment, I was fully prepared to be wrong in my viral theory if the testing and diagnosis contradicted it. However, this ENT had nothing to offer except exercises. I will absolutely do them BUT, I'm not going to stop the JOH regimen. I'm just disappointed I could not add an anti-viral RX to the mix.

    As for the JOH regimen, I'm on week 6 and have phased in all supplements. The slow release C did upset my stomach and I had to cut back on that one.

    I still have good days and not as good days but overall, every day is a functioning day. I feel progress in very small and perceptual increments. For me, the biggest challenge is to not let myself fall into an attitude of discouragement.

    I am considering seeing my Integrative medical doctor whom I saw a few years ago for fibromyalgia. Her input could be helpful. The downside is that she is not covered by our insurance and this year I have already incurred some hefty medical expenses. I know she would be supportive and willing to work on this with me so we'll see.

    Thank you for this forum where we can air our thoughts and ideas and find support. I appreciate it very much.
     
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  9. Blakeh

    Blakeh Member

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    Hi Leonora,

    Thanks so much for the update. I’m sorry the appointment did not go as well as you would like. You can always get a second opinion. I’m hoping you continue to improve and feel better.
     
  10. Onedayatatime

    Onedayatatime Active Member

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    Hi Leonora,
    Have you taken the time to consider MAV? You said the Doc suggested you consider migraine. I posted the book about migraine in a previous post above.

    No surprise on the AV's. I had to turn to my GP when I gave them a try. No excuse for his condescending attitude. I certainly would not return to that Dr. But that's just me.
     
  11. Philip valenti

    Philip valenti New Member

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  12. Philip valenti

    Philip valenti New Member

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    Stay on that John from Ohio regimne and low sodium diet and you should do well. My doctor put me on a diaretic (water pill) and I drink tons of water. You may want to talk to your dr about being on a water pill. Going to the gym and sweating it out is always a good addition to getting the sodium out after eating badly.
     

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