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Discussion in 'Your Living Room' started by DianeD, Jan 3, 2020.

  1. Rich

    Rich Member

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    How you doing DianeD?
     
  2. DianeD

    DianeD Member

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    Teesdale, thanks for your notes of caution. Even now, after 8 weeks of no vertigo, I find myself missing an afternoon dose of Lysine because I feel so good that I just don't think of it. How did you know to try the Monolaurin? If there is a recommendation on this site, I've missed it. And why did you choose to take a B complex vitamin instead of the B5/B6 combination? I noticed that B complex vitamins generally have far less than the recommended dose of the B5/B6.
     
  3. DianeD

    DianeD Member

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    Hey, Rich. Another good week for me! You?
     
  4. Rich

    Rich Member

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    Glad to hear your doing well!!!! As for me started taking lysine about a week ago,3 grams spread over the day, and it seems to be doing something just don’t know what yet. Have had headaches , dizziness and even gave me a cold sore in my nose! Which I haven’t had for years. Went to the ENT this week which I haven’t seen for over 8 years and a big NO on the antivirals. Wouldn’t even entertain the idea. Hearing down to 40% in the mm ear everything ok with my good ear except a little infection which we are going to treat with drops. No vertigo though. But have more than normal dizziness since I started the lysine. Think I’m about ready to introduce the lemonflavoroids in the next week or so and see what’s happens. Doing this slow to see how everything reacts to the changes. Am going to my GP soon to see about something for anxiety because think some of this dizziness is being caused by it. Again glad to hear your doing well.
     
  5. Gardengal

    Gardengal Member

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    Ask your GP for av when you are there! I had to get my GP to prescribe. I mentioned to my ENT that I take the AV and he asked me who my GP was, like he was going to get her in trouble or call her or who knows. I wouldn’t tell him and I haven’t been back. ENTs aren’t really hip to scripting AV. GPS will usually do it without hesitation.
     
  6. Gardengal

    Gardengal Member

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    I took my Gacek article the first time when asking GP. She read it over and said “let’s give it a try, why not?!”
    I had an attack right before I got to her office, started in the car. My husband wheeled me in in a wheelchair. I couldn’t move to look up at her. I didn’t know what she looked like until my follow up 2 weeks later. It probably looked pretty dramatic. She has scripted the full dose for me for 4ish years now.
     
  7. Rich

    Rich Member

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    Ask the GP too, he was the first one I ask, nope, no evidence it works.
     
  8. Gardengal

    Gardengal Member

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    Hmm. Sorry about that. Wonder if you could see another. I got my script in a new patient visit. Maybe be worth a shot, before you rule out trying them.
     
  9. Rich

    Rich Member

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    I haven’t ruled out trying them. I’m not a quitter, I’ll get them even if I have to go black market!!!! Lol. (Wouldn’t happen to know where I can find a antiviral drug pusher would you?) lol
     
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  10. wendy

    wendy Member

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    There is actually clinical studies that show AVs help and providers won't even give them on a trial basis? I wonder why.
     
  11. DianeD

    DianeD Member

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    Rich, I agree with Gardengal. It's time to find a new doc. Maybe another ENT doc. I had to ask my ENT doc for the antiviral and he then acknowledged the Gacek study, and prescribed the Acyclovir, which he said was the drug of choice, at 800mg 3x/day. He had me cut it back to 2x/day and said if I have a good year, then cut it back to 1x/day. It's becoming a more acceptable treatment, and it's not like you're asking for a narcotic! Use the excuse of wanting a second opinion to make an appointment with someone else. Keep us posted!
     
  12. Onedayatatime

    Onedayatatime Active Member

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    I went to my primary care Doc to get the script cus the ENT sayed AV's were BS. Unfortunately, for me, AV's did not help. AV's are a no brainer to give a try.
     
  13. California Sun

    California Sun Active Member

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    I sent a copy of the Gacek article to my PCP, along with a letter explaining what I wanted to do, that if she was willing to prescribe the AVs I'd make an appointment and go in. Got a call from one of her staff giving me a big NO, and a referral to an ENT. Went to the ENT and got a big NO from him, too.
     
  14. Onedayatatime

    Onedayatatime Active Member

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    Get some new Dr.s unles you are really amazed by their superior care. :eek:
     
    • Like Like x 1
  15. wendy

    wendy Member

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    Rich. If the L Lysine ends up improving your symptoms after you have been on it awhile, it seems possible your issues may be antiviral and AVs would help. In my case, I had some negative effects when I upped the Lysine to 3000 MG a day and then I slowly improved. I added Monolaurin and then Vitamin C. It took about 6 months but I have felt pretty good for the last 2.5 months. My next step is to switch the monolaurin for Olive Leaf Extract for awhile per a recommendation on this page. I know my Meneires is virus related because of the success I have had with Lysine and the natural antivirals. I am debating asking for the phsrma antivirals myself.
     
  16. Rich

    Rich Member

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    I started on 3000 mg of lysine a day and after the course of 7 days or so had more dizziness then before taking it. I am curious if lysine starts working that quick. But I started feeling something happening with in 24 hours. After 7 days I'm finally feeling not as off and dizzy. Was also curious if the JOH regiment will work without antivirals? Lots of luck on obtaining the antivirals. Hasn't went to well for me so far.
     
  17. wendy

    wendy Member

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    At this point I am sticking with the OTC natural antivirals. I have been using Monolaurin since September.
     
  18. Rich

    Rich Member

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    Are u doing well?
     
  19. EmilyP

    EmilyP Member

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    Hi Diane, my story (starting Sept 2018) is very similar to yours except I have never had vertigo. I had about 2 months of a swoosh feeling with unsteadiness. I had ear fullness, tinnitus and inflamed nerve feeling on the left side of my face. Initially, I thought I had a sinus infection. After several months of getting very little Dr. help, I found this site. I also found that my dr. was listening to me so when I quit his regime of diuretics and elevil and told him about the JOH regime he was very receptive. I was so relieved.
    I started exactly one year ago on JOH, then in Feb added Acyclovir 800 x3, then added the B5&6 to my regime.
    It took a long time at least 3 months to see a small improvement and almost 8 months for me to have good results. The B5&6 took away any unsteadiness I might periodically experience. I still have tinnitus but its very low and some days not at all. My nerve feeling also comes and goes. I can function now. thankfully..
    Like you I am so grateful for this site and all the help I have received from everyone. Yes JOH thank you so much!!! Also Benny Hill, thank you.. You hang in there and praying for your recovery in the near future. :)
    And yes stay vigilant!!
     
  20. DianeD

    DianeD Member

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    EmilyP, if I get to 8 months without a vertigo attack, I'll be celebrating with a real cup of coffee, a giant glass of red wine, and a bag of potato chips! And then I'll go back to being vigilant for sure. I hope to live one day without a barf bucket in my car and without having my husband and friends watching the nasty effects of this disease. Taking this pile of pills each day seems like a small inconvenience in comparison.
     

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