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Antivirals

Discussion in 'Your Living Room' started by AmyLeigh, Apr 11, 2019.

  1. AmyLeigh

    AmyLeigh Member

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    Hi all. I have posted a few times in the last two weeks and have done a ton of research on this forum (and the web in general) and I keep coming back to the same suggestion - try antivirals. Before jumping on the antiviral train I had a couple of questions for those of you who have done it (any feedback would be SUPER helpful)...

    Quick background first:
    - Have had Meziere's on and off for 5 years w/ all the symptoms - currently getting strong vertigo "attacks" 3-4 times/week.
    - Did the Dex injections and shunt surgery - neither worked
    - VERY hesitant to try anything destructive just yet (nervous about being permanently 'wobbly' as I've read can happen to people, I'm only 35 w/ two little kids)
    - Started the JOH regimen & B6 (with a few added antioxidants) about 2 weeks ago, know I need more time to see if it works, so far it's not.
    - Eat very low salt (1,000mg/daily), no caffeine, little alcohol, low carb, considering removing gluten completely

    My Questions:
    1. My ENT said he would support any non-traditional treatment with me EXCEPT antivirals - he called them "dangerous." I've done extensive research and found nothing supporting that, but has anyone else been told this?

    2. Has anyone been prescribed these by a doctor other than an ENT (a PCP, Neurologist, Functional Medicine doc, etc.)? I'm hitting a lot of dead ends with ENTs.

    3. I saw a few postings years ago of people in the US able to get antivirals from Canada. Does anyone do that or can anyone point me in the right direction?

    4. Should I take in conjunction with JOH? Should I wait 3/4 months to see if JOH works? (I'm going out of the country in a month and won't have access to healthcare [hiking the Andies Mts] and am VERY worried about my Meziere's [which was in remission when I scheduled the trip]). Anyway, I'm hesitant to wait, but I've seen some people have setbacks before things got better. I guess I'm just looking to hear what people's experiences have been like, especially in relation to JOH.

    5. From my research I think I'm going to ask for 3,000mg of Valtrex/daily to start, then eventually go down to 2,000mg once my symptoms subside. Does that sound right?

    6. I have seen that some generics don't work as well. What are some recommended generics?

    7. Will I be on this forever or will this eventually "kill" the virus and I can taper off?

    Again - any help/feedback/information is appreciated. Thank you all!

    ~Amy
     
  2. Kevinb003

    Kevinb003 Member

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    Amy, sorry you are going through this. First a little background. I have had this disease for 14 years. It initially started in my right ear and after deteriorating to drop attacks and no serviceable hearing in that ear, I finally had a laby 6 years ago. That was a godsend and I had my life back for about 5 years until last year when I started getting bilateral symptoms. Based on all the research on this forum and others, I asked my neurotologist for antivirals. He didn't hesitate at all and prescribed me acyclovir at 2,400mg per day. I can't tell you what a relief that has been! My symptoms all but disappeared within a couple weeks. I have had a couple of relapses, but they seem to only occur when tapering back the AV to < 2,000mg daily. Once I boost that back up to 2,400, I'm good so that seems to be my threshold. I also take L-Lysine per the JOH regimen, Betahistine, olive leaf extract and monolaurin. Additionally have started magnesium spray as well since there is a theory that almost everyone is magnesium deficient and it helps with the inner ear. As far as I understand, the virus is never destroyed, the AVs inhibit it and keep it from replicating--open to anyone keeping me honest on that. Therefore, you will always have to take something to suppress the virus.

    From my understanding, any Dr. (at least in the US) can prescribe AVs, even general practitioners. It may take some work, but you have to find someone who understands the condition. Also from my understanding, AVs are NOT dangerous and pose few, if any, side effects even long term. What's dangerous is continuing to have vertigo and your Dr. should empathise with that as opposed to denying you something that many on this forum have found helpful. Don't take no for an answer and find someone who will get you the AVs if you can. My neurotologist will get me anything I need to save my remaining ear. I wouldn't accept anything less.

    Best of luck and do keep us posted.
    --Kevin
     
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  3. teesdale

    teesdale Member

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    I concur with all of what Kevin states above. I will add my testimony directly to your questions:

    1. Dangerous? I've been on 2000mg Valacylovir daily for a few years now. My blood test numbers are very good. I'm 60 years old.

    2. Who prescribed? My primary doctor prescribed mine. He was reluctant but I gave him the Gacek Report and looked him dead in the eye and said I don't want to live like this any more. He prescribed.

    3. Canada? There are numerous people on this site from Canada and someone should be able to answer.

    4. JOH? I had good results on JOH starting back in 2008. After a couple of years of remission, I believe my symptoms returned when I became lazy on the routine. I now take the JOH regimen with the antivirals. Not sure if I need to continue with JOH but I'm too worried about slipping back into symptoms to stop. Last week I started on the B5/B6 regimen. I guess I am just of the mindset to throw everything (including the kitchen sink) at the beast to live symptom free.

    5. 3,000mg to 2,000mg? Exactly what I have done. Once again, I somehow got lazy and dropped to 1000mg unwittingly. My symptoms returned. I am back on 2,000mg, feeling good, and I don't think I will ever drop below that.

    6. Recommended generics? I have had a couple of duds - particularly Mylan. The one generic that has always worked for me is NorthStar. I can only hope that my insurance company continues to provide it.

    7. Will I be on this forever? I believe so. But even though I've had this disease for at least 29 years, I can't figure it out.

    Wishing you all the best in battling this monster.
     
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  4. June-

    June- Well-Known Member

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    I got the first rx of acyclovir from my family dr. She was familiar with the drug, did not see it as very risky, knew i had had bad viral attack (mono) about a year earlier. She knew the ents had not been able to help me. She said ‘i will prescribe it if you want to try it. ‘
    We both figured it was just a shot in the dark but not much risk. This was 2008. I have not taken acyclovir or any antiviral for years. It does takes months, minimum 3 or 4 probably more to get max benefit. Remember, it is not an on off switch, there will be setbacks even if it is the right med for you. Two steps forward, one back, damage has been done and healing takes time. Look at the long term trend. I also got some benefit from allergy testing and shots. Also a long term thing. But here i am 12 years later with very good hearing, no tinnitus, autophany, no balance issues or vertigo and taking no meds. This was my only hearing ear so most destructive approaches were not available to me.
     
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  5. EmilyP

    EmilyP Member

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    Hi Amy,

    I have been dealing with this since August 2018. My symptoms are ear fullness, constant tinnitus & in the beginning off balance to swissy feelings lasting about 15 minutes.

    My ENT dx me with Acute Menieres Dis. Did the round of diuretic & elavil. They made me very sick. In middle of Jan began JOH and later Jan my ENT prescribed aycalvior 2400 s day. Last month I started the B5&6

    I have seen a slow improvement. No swissy at all, face fullness lessened & but tinnnitis still here, although on some days seems very minimal. My ENT was very agreeable to the antiviral & has been positive to my JOH regime.

    I struggle with the tinnits I wish it would go away! Right now it’s very loud. But I will stay on what I’m doing, I’m really only 3 months in to all these meds. I will be on these all my life. I hope you find a Dr who will help you and prescribe the antiviral.
    Best of luck.
     
  6. AmyLeigh

    AmyLeigh Member

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    Thank you all SO MUCH for your feedback! Last night I reached out to a family friend who is a PCP and he said he would work with me and get me started on an antiviral regimen - I see him in the office next week. Thank you all again! When I start next week I will post how it's going. Happy weekend everyone :)

    (Also, I just re-read my post above, don't know why my computer changes Meniere's to Mezieres)???
     
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  7. Fisherman42

    Fisherman42 Active Member

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    Awesome Amy! Good luck! I too have found relief with antivirals be patient sometimes they take a period of time to kick in.
     
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  8. AnneT

    AnneT Active Member

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    I’m in canada and got Valtrex prescribed by my family doctor.

    Are you Canadian or American?

    I don’t know how Americans access Canadian pharmacies.
     
  9. Rgv

    Rgv Member

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    My tinnitus is the highest level right now although i havent been dizzy in almost 48 hrs. I wonder if this is the antivirals kicking in plus lysine JOH regimen, or just a bad day. Do any of you just have really bad tinnitus days for no reason ? Would help to know if so. Thnx
     
  10. Tony Wilson

    Tony Wilson New Member

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    I'm due to give you a follow up since I'm 4 weeks in on 3g of valtrex. No vertigo and still pretty steady on my feet. Tinnitus and fullness seem to fluctuate more than I like but I've had some days where they are both really minimal which I can only attribute to the AVs. That being said I don't think life will ever be rid of them.
     
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  11. Dnrpn

    Dnrpn Member

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    I’m curious about everyone’s tinnitus. Was yours low or high?
    Mine is like an approaching heard of elephants, low. Or like I’m sitting in a plane. I have also developed high pitch on top of it now sometimes. All of my symptoms are at the same time but fluctuate. No vertigo thankfully, just lightheadedness. I never have fullness alone. The longest symptom free time was 3 weeks max. That was in January.
    My ent has agreed today to start valtrex :) I don’t have an absolute diagnosis but I’ll try anything before any surgery.
     
  12. Fisherman42

    Fisherman42 Active Member

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    Mines high pitch like a hissing of a leaky steam pipe. Volume goes up and down but pitch always stays the same.
     
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  13. June-

    June- Well-Known Member

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    I had the 90,000 watt fan noise in my ear 24/7 for 9 months. In addition i had clanging of metal and sound of heavy equipment moving when i went to bed. Sometimes there were far away explosions. Peoples voices bounced off windows and i heard motors in big box stores. Mens voices were distorted and women sounded like two people talking at once. My own voice sounded like a kazoo. Antivirals fixec all these things. They are all gone for years. Allergy shots also help ed the hearing and mabye the fullness but the antivi rals did the most for distortion.
     
  14. Rgv

    Rgv Member

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    Mine is like fishermans, more of a high pitched leaky steam pipe
    I've been trying Vicks vapor rub on a cotton ball slightly in my ear not too deep. Supposed to help clear the blocked estachuian tubes I guess but a long shot.
     
  15. June-

    June- Well-Known Member

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    If it is middle ear, flonase might help?
     
  16. Dnrpn

    Dnrpn Member

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    Wow that sounds absolutely horrific. How wonderful that it was fixed! What were the allergy shots?
     
  17. June-

    June- Well-Known Member

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    It was pretty hard to tolerate and at the same time there were signs i was starting to have balance issues. I think it was the antivirals that did the most to get rid of tinnitus and distortion. The allergy shots were done by Dr Derebery at House Ear Clinic based on testing she did. The components were all environmental things, pollens, molds and whatnot. The combination of antivirals and allergy treatment returned my to normal hearing and stopped the progression towards vertig.
     
  18. Irishstu

    Irishstu Member

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    Hi June. What anti virals did you take and how long were you on them before you were able to stop taking them. I always understood that once you started in AV’s you had to keep on them to surpress the virus?
     
  19. Tony Wilson

    Tony Wilson New Member

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    Anyone had luck getting off other meds once on AVs for awhile? I'd love to dump betahistine and diuretics but tried that in the past and went to vertigo city. I'd stay on JOH plus pretty good diet and lifestyle. Curious if others were able to normalize after awhile. The brain fog for me is the worst part minus vertigo and I'd like to be as medication free as possible. Thoughts please.
     
  20. June-

    June- Well-Known Member

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    That may be true for dome but was not true for me. I took acyclovir 400mg 5x day throught thr day, for about 6 weeks. I thought i got about 60% improvement primarily in various forms of distortion and tinnitus which was huge for me. After that i went to see dr derebery at house ear in LA and she prescribed famvir (i forget the exact dosage) and allergy shots. I only took famvir for a matter of months and occasionally when i had a flareup. I think as far as ant.ivirals are concerned i personally got most of the. Benefit the first six weeks. Remember, the ear has been injured and takes a while to heal. The allergy shots also helped a lot. It has been 11 years now, i have not taken antivirals for probably 6 or 8 years or more and then was only taking them when i had a flareup. I honestly dont know if they helped the flareups or they would have gone away anyway. It the beginning though they were a Godsend.
     

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