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Antiviral Question - How long is the 'it can get worse before it gets better' period?

Discussion in 'Your Living Room' started by Boba, Aug 29, 2021.

  1. Boba

    Boba New Member

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    Aug 15, 2021
    Hi all, I've been on a new antiviral for a few days and I'm not sure if it's related, but my dizziness, hearing ability and fullness have been worse with it. Now I have read a few comments that it could be worse before it gets better, but I am not sure how long is it going to be 'worse' for? I'd like to know just in case it's actually not going to get better and I should stop taking them. Not knowing what is supposed to happen is making me feel anxious, so any comments will be appreciated. Thanks.
     
  2. Donamo

    Donamo Active Member

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    I think the thing to remember is that the AVs will not make it worse in the long run and may make it better. So my advice is to just keep on with the AVs and avoid foods containing too much arginine (eg nuts) and hope for better days ahead.

    Which AV are you taking and at what dosage?
     
  3. Boba

    Boba New Member

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    Aug 15, 2021
    I was taking Aciclovir 800 mg x3 a day for 3 weeks - that did nothing, so I'm now on Valtrex 1000 mg x3 a day. My symptoms have been quite well controlled with super low salt diet and I've only been having mild ear fullness while on it, so the dizziness and hearing loss is quite worrying as I'm scared that after one of these episode my hearing would not return to normal again.
     
  4. TinaG

    TinaG New Member

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    Hello, I did the exact doses of antivirals from MD Richard R. Gaceks study. At that time I was experiencing weekly vertigo, as soon as I started taking Vaclovir the vertigo stopped. The other symptoms dissipated over the next 3 to 4 months. I'm still left with tinnitus, but the hearing loss has stopped, no more brain fog, no fulness or dizziness. Diet made a difference too - coffee was definitely a trigger, I ditched as much sugar as poss and gluten. Opted out red wine for a low carb beer. I lowered my salt but I think sugar is worse - if it's viral. My daily suppliments are garlic, probiotic and pycnogenol (pine bark). I've been vertigo free for 14 months now I hope this helps.
     
  5. TinaG

    TinaG New Member

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    Oh and dairy... I know a nurse who suffered from a lot of ear infections, she dropped dairy from her diet and said it helped a lot. I don't eat too much dairy anyway. I've replaced milk with coconut milk.
     
  6. EkkoMusic

    EkkoMusic Member

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    Jul 26, 2021
    Tina, this is such great news, and thank you for sharing your success here to help show the success of antivirals!

    I am about 1.5 months into 500mg 2x/day of Famciclovir. While I'm still having issues I think I can fairly report a noticeable change.

    My fourth and fifth weeks on famciclovir were incredible—I was essentially cured with barely any symptoms. Sadly since last Sunday, I've had a sort of resurgence and this week now has had daily issues again (though still almost half of what they were pre-AV treatment). May I ask, did you have these ebbing and flowing periods of setbacks in your experience? A few weeks great, a few weeks worse, then back to great, until gradually plateauing at no symptoms by 3-4 months?

    I'm currently diagnosed cochlear hydrops so I've never had vertigo, but my main complaint was the aural fullness. Since the antiviral, the fullness went bilateral (perhaps the AV engaging the pathogens to fight back) but the frequency, duration, and intensity of the fullness episodes has gone from about 12+ hours daily to one or two ~4 hour instances daily, nowadays more in the usually 'good' ear than the bad. At what point did you see relief from the fullness? Was that the last to go?

    I too am trying to see how diet has an impact—also avoiding sugar, and I'm trying oat milk / almond milk in place of regular milk. How big of a difference has this really made for you? Now that your symptoms are under control, do you think you can lighten up on the diet?

    Sorry for all the questions, but would love to hear more about your journey here!
     
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  7. TinaG

    TinaG New Member

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    Hi, yes it's so interesting to compare notes. I have written my menieres story in a previous thread - in short - last year in lockdown (I live in New Zealand) I was struggling terribly. I researched and found Piano Joe's story which I found super helpful, also MD Richard R Gaceks study - I got an allergy test done, which really gave me a good idea of a lot of my possible triggers. I eliminated as much as I could and I know it made a huge difference. I've definitely relaxed more now but feel the change in diet has been for the better and benefited me in our ways so I've pretty much kept it the same. There have been a few red flag moments - Easter this year we had our chef friend stay and he cooked all weekend, creamy, cheesey, salty, sweet deliciousness, as I was feeling great, I endulged. 2 days after the ear fullness returned and I felt on the verge of vertigo, I immediately ditched all the rubbish food and recovered over the next 2 weeks, it was very scary!
    Just recently I'd been reintroducing coffee back into my morning - at work my boss bought me a cafe-coffee in the afternoon (I knew I shouldn't have), about 3 hours later, I started to spin out, like the start of an attack!!! No more coffee for me.
    So throughout this time I've also been taking the antivirals. From what I can remember, at the start of the course, within a few weeks I felt clarity, I had terribly brain fog, I work and have two young boys, I can remember just making it through each day, the fullness (left ear) was the next to go (for a while I was doing a series of balance head exercises in the morning because I felt like I was walking, tilted over) my confidence returned, anxiety lifted. We are quite an active family so this year has been magic - I'm back mountain biking and skiing (we live next to a mountain) with the kids, back to yoga and running - I'm so grateful! I know it's still there (definitely feels suppressed) but will just keep going - considering halfing my daily dose of antiviral med, might just wait till the ski season is finished Oh had covid vax a couple of weeks ago - no noticeable change in Menieres
     
  8. Boba

    Boba New Member

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    Aug 15, 2021
    Thanks, how do you take olive leaf/oregano oil/monolaurin? I'm looking to start the tablets from JOH regimen soon - would you recommend starting these first or JOH and will they interact?
     
  9. Boba

    Boba New Member

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    Aug 15, 2021
    Just to clarify, did you do 3 weeks of Valacyclovir 1000 mg three times a day then twice a day for 3 weeks, then once a day thereafter? I read Dr.Gacek's recent paper on antivirals and some people were on max. dose for like 8 weeks before they reduced the dosage.

    I've checked your thread - congratulations on your one year vertigo-free anniversary! I'm going to look up the 'Joe Bongiorno's story' you recommended next.

    I've had similar experience with diet. It feels like sodium takes awhile to leave the body. Like when the sodium level is high the symptoms come on within a few hours, but it does take weeks for the symptoms to subside afterwards.

    Have you tried decaf coffee? There's still caffeine in them, but much lower than normal coffee, so it might be an option for you.

    I don't know if you've experienced something similar, I notice that certain yoga poses make my ear fullness worse, but exercise seems to help, so I'm sticking with walking for now.

    Also, which vaccine did you have? I'm thinking maybe Meniere's react differently to different vaccine type as some people said vaccination worsen their symptoms.

    Thanks for taking the time to answer me. Your advice certainly helps.
     
  10. TinaG

    TinaG New Member

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    Yes, decaf isn't too bad - a good substitute. I have been drinking dandelion tea for a long time, as it helps with water retention, thought it might help with my ear 'way back when'. I believe it's also good for the kidneys.
    My antiviral dosages were:
    1gm valacyclovir 3 times a day for 3 weeks. Then decreased to twice daily for 3 weeks, and now 1gm once a day.
    I also did a course of antifungals, the same as Joe Bongiorno. I didn't have any side effects or notice any changes from the antifungal meds but who knows, they could have helped.
    I'm also a fan of intermittent fasting - eating between the hours of 10am and 6pm, this means the body isn't spending all its time digesting and can be more efficient at removing or regenerate good cells. Can help prevent diabetes, heart conditions, some cancers and neurodegenerative diseases. I've found it relatively easy.
    Yoga I love and have practiced for over 10 years, when I was sick I took over a year off, there was not way I could have done it! Once the fullness left, I was very happy to return. I definitely take it easy now a days, I don't push myself like I use to. When I had my coffee wobble a few months ago, I was super nervous in class. Well done you for getting back on the mat Food wise I found Laura Fishers website a good read. She's a nutritionalist who also suffers/suffered from Menieres.
     
    • Like Like x 1
  11. Boba

    Boba New Member

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    Aug 15, 2021
    I'll research about them. Thank you so much!
     
  12. TinaG

    TinaG New Member

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    Oh the covid vax I had was Pfizer/BioNTtech. We only have Pfizer in New Zealand
     
  13. EkkoMusic

    EkkoMusic Member

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    Jul 26, 2021
    I have suspected the same actually... I'll find a negative change in diet can make an impact in hours, and bring on symptoms that last for weeks. Curious what the explanation behind this is... if there is indeed a correlation.
     
  14. Boba

    Boba New Member

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    Aug 15, 2021
    Would you be able to list all the things you're currently taking for Meniere's, if you don't mind? I joined this forum recently so there are many treatments I haven't heard about before. Like this is the first time I've heard about beta glucans.

    Are Monolaurin capsules not as good as the pellets? I can only find Solaray's Monolaurin where I live.

    At the moment I am going to focus on slowly adding the JOH supplements, but I will research on these supplements that you have suggested. Thanks.
     
  15. Boba

    Boba New Member

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    Aug 15, 2021
    I'll keep that in mind. I'm not sure if I can get Pfizer, but maybe mRNA vaccine is a safer choice...
     
  16. Boba

    Boba New Member

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    Aug 15, 2021
    Maybe it's related to how our body loses sodium? Like it's one of the essential nutrients so we don't really lose them fast enough (which is a good thing for those without Meniere's). Which leads to another question, if we try to do activities that make us lose sweat (and hence sodium), would we be able to shorten the duration of severe symptoms?

    I've read in one of Meniere's diet leaflets which recommended controlling sugar intake as well as salt, but I'm not sure which one it was. How do you find restricting sugar intake so far?
     
  17. EkkoMusic

    EkkoMusic Member

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    Jul 26, 2021
    I'm sure others could comment more on this, but I haven't noticed a strong difference, besides a general benefit to "eating healthily" overall. TinaG did say (in post #5 of this thread) that she thinks sugar is a big culprit if you have a viral cause.
     

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