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Antiviral preference?

Discussion in 'Your Living Room' started by Fisherman42, Nov 14, 2020.

  1. Mindosa

    Mindosa Member

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    In our country they are not so cheap. When I decided to try them I calculated the cost of the all antivirals according to the Gacek treatment protocol, so:

    Valtrex - the cost for 9 first weeks - 541 eur (642 usd), maintenance dose per month - 129 eur (153 usd).

    Valacyclovir - the cost for 9 first weeks - 385 eur (457 usd), maintenance dose per month - 92 eur (110 usd).

    Acyclovir - the cost for 9 first weeks - 135 eur (160 usd), maintenance dose per month - 16 eur (19 usd).

    So it's quite a money, especially when you need to take AVs for a long period of time. Besides, in our country there is no medical insurance for antivirals to treat MD.

    The only one drug which is approved for MD in Europe and in Canada is Betaserc (Mylan producer, original), which costs per month is about 16 eur (19 usd).

    So if the pharmaceutical companies follow the money, which is logical, why don't they follow the money with AVs in the MD case? Especially Milan producer, which followed the money with Betaserc, but not with AVs which they are also producing and the more - antivirals offer much more money than Serc?
     
    Last edited: Nov 24, 2020
  2. IvanA

    IvanA Active Member

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    Don't take AV, they don't work. ;)

    Tomorrow I go down to 500mg of valaciclovir maintenance after the best weeks of my life. Good luck waiting for a private company to do clinical trials for something that is known to work, but not all.
     
    • Agree Agree x 1
  3. Mindosa

    Mindosa Member

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    Congratulations! Keep posting your progress!

    As I remember you wrote, that you already had August as a good month. Seems that something is working for you and you are on a good way!

    Besides, how long are you taking valacyclovir? Have you tried others AVs before?
    Also, could you please update what supplements you are taking now and for how long, also what dietary and lifestyle changes you do. As I remember, you were recently experimenting on a free gluten diet, right? For how long, did you notice the difference?

    I got the feeling that you could intentionally miss something here in order to defend the virus theory, so please be sincere if not for me, then for others :)
     
  4. Mindosa

    Mindosa Member

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    Actually, I was taking acyclovir, but after 5-6 weeks I started to experience side effects, skin rash, problems with bowel and also noticed the hair loss. Unfortunately I didn't feel any difference in MD symptoms when I was taking acyclovir, so I decided to cancel it. I even have one box left of acyclovir.

    But I was and I am still taking lysine 3 grams per day and according to John of Ohio, it should be enough to suppress the virus in the long run, so when my MD symptoms were not so bad, the decision was not so difficult and I did choose a less harmful way.

    Once a Hippocrates said - first do no harm
     
  5. IvanA

    IvanA Active Member

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    I'm glad that in the end you are ruling out the viral cause too either with AV or lysine. I'm still on valacyclovir.
     
  6. June-

    June- Well-Known Member

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    I think one hurdle is there is no definitive test for menieres. If menieres is in fact just a label for various inner ear problems not otherwise explained then no one solution is ever going to pass the test. Even the way we talk about it here, mainly unexplained vertigo Is not very useful. How you going to sort out the MAV patients, include the CH patients etc without having a motley crew for your test subjects? Get a definition of menieres and then a test to prove patients have it and then a double blind test of anything willbe a piece of cake but i dont see how you do it now. FWIW there have been some studies which were inconclusive but as you know not proving something is not the same as disproving it.

    Antivirals and allergy treatment gave me back normal hearing and normal life with no downside. I make no claims but think it would be awful mean not to tell people who suffer so they could try it if they want to because inner ear problems suck.
     
  7. Mindosa

    Mindosa Member

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    But why do there exist other quality double blind studies (for example SPI-1005) for Meniere's disease?
     
  8. IvanA

    IvanA Active Member

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    Treatments like 1005 focus on treating the consequence (inflammation) without knowing what causes it. It is as if an unknown disease produces a continuous fever, doctors do not know what causes it and therefore how to find a definitive cure, but they know that with antipyretics low fever and allows the person to live better, but without curing it.

    As far as I have read, 1005 is not going to cure anyone permanently, it will have to be taken for life. Just as a diabetic takes insulin because it treats its consequence, but does not cure their initial health problem (although at least diabetics do know what its cause is).

    That is why much of the current research for Meniere and vestibular diseases is not focusing on finding a cure but on new forms of diagnosis that allow clearly detecting the pathologies that each person has, from there it will be much easier to propose treatments and focus new research to find a cure. Nowadays you cannot do a biopsy of the inner ear or put a camera in without killing the patient and therefore they cannot see what is happening in there live, this is Meniere's main problem, it is very possible that the treatment is easy to develop once it is known for sure that we have in there that it is wrong, but right now it is a matter of trial and error that doctors obviously do not want to do.

    However, I am quite convinced that when they develop something that allows a precise diagnosis of the cause, what they will find is that many people have a virus, other allergies, other fungi, other bacteria, others a malformation, others an autoimmune problem, etc. And there won't be a one-size-fits-all cure, just personalized treatments. And precisely what many of us are doing in this forum is looking for a self-personalized treatment.
     
  9. Donamo

    Donamo Active Member

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    Hi June, good to "hear" from you again :) You were on this forum when I first came here back in 2014 or so and I was always pleased to learn from your experience.

    Unfortunately, I am back. Feeling okay now, but I lost a fair amount of hearing in my bad ear with two attacks this summer. That is disappointing for me. It was somewhat my own fault because I was eating a lot of nuts and baked goods made with nut flours. And of course Covid stress, I have daughters that are working with the public. I had pretty much forgotten about Meniere's. However, it had not forgotten me LOL!

    I was wondering, do you take anything as a "maintenance" or eat differently due to your Meniere's background? I am back on AVs and restricted diet, but progress is slow and I'm afraid my hearing loss may be permanent.
     
    • Like Like x 1
  10. Mindosa

    Mindosa Member

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    So why are there several quality double blind studies testing anti inflammatory agents with MD, but no one with AVs?

    Especially interesting for me is Otonomy Inc. company. It’s founder Dr. Lichter is one of us, he was diagnosed with Ménière’s disease. So he knows everything about MD causes like us in this forum. So why did he decide to test dexamethasone in the gel form (OTIVIDEX) for MD, but not AVs in the same form, when we know that virus theory is so prevalent in MD and it's recommended first to rule out the virus theory?
    Also this company has in their program 5 more drugs to test, but no one with AVs
     
    Last edited: Nov 30, 2020
  11. IvanA

    IvanA Active Member

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    Mindosa I have already explained why several times, so I will simply consider that you are kidding and I will not answer this topic again because it is disrespectful for me to waste time with people like that.
     
  12. Mindosa

    Mindosa Member

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    IvanA, I am serious and I think you need to start an initiative - to write a letter to Otonomy Inc. company’s founder Dr. Lichter, asking him to start testing AVs for Meniere's disease in a quality double blind study.
    For better weight, you can ask John of Ohio to add to this letter his 147-page PDF compendium of user reports of his Meniere's treatment regimen, whose central focus was to inhibit herpes virus replication, by yielding 88.2% "success" rate.

    IvanA, AVs is helping you and you always have strong arguments supporting virus theory, I almost believed that I needed to start testing AVs again! So I think, with John's study report help, you can succeed there. For a noble purpose, be our AVs MD Ambassador!
    You have my vote!
     
  13. IvanA

    IvanA Active Member

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    Don't waste your time answering me, I've put you on the list of ignored users and your messages don't appear. Go well with fasting, ozone and the rest of the things. Bye.
     
  14. Mindosa

    Mindosa Member

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    Sorry that I became kinda of your "enemy" by questioning the virus theory's prevalence. I didn't want that, realy.

    But why not try with a letter? It can be a good idea! Some of this forum members have already done similar things before. For example Mac was agitating to write letters to FDA for faster SPI-1005 approval.
    good news

    Also another forum member johns was writing a letter to FDA requesting the FDA to approve Otividex (OTO-104) for the treatment of Meniere’s disease as soon as possible.
    Otonomy Inc - Otividex

    So I proposed to do this first to you, because you seem to me to be most energetic about the virus theory and such perseverance will help achieve the goal.

    Also here I proposed to write letter to Dr. Lichter first because he is one of us and we also have John's of Ohio study report with almost 90% with positive results.

    With this strategy we cannot fail! So please take no offense here and be our Ambassador!
     
    Last edited: Dec 1, 2020
  15. June-

    June- Well-Known Member

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    Sorry to hear about your relapse Donamo. It is not your fault. It is a lousy disease about which we know top little. I dont do snything special but i do know caffeine can affect my hearing and i should avoid it. Otherwise i have just been very lucky. I did take allergy shots for 8 years. Maybe that had a lasting effect. Do try to minimize stress ( it is a catch 22 i know) possible allergens, and get enough sleep. Good luck.
     
  16. June-

    June- Well-Known Member

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    There has been at least one double blind study with av’s (results inconclusive) that i know of perhaps others i dont know of. What point are you trying to make? Go ask the Otonomy people your question if you want to know. Write them a letter. Maybe you can be in one of their trials. It is childish to keep asking us what someone else thinks or to write a letter for you. Ask them. You write your letter. Take pen in hand and do it and tell us what they say.
     
  17. Mindosa

    Mindosa Member

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    Are you about Gasek's study?
     
  18. Mindosa

    Mindosa Member

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    I am not doing things that I do not believe in. But maybe for other this idea could be attractive
     
  19. June-

    June- Well-Known Member

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    no
     
  20. June-

    June- Well-Known Member

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    i have no idea what your point is? You arent interested but you think other people are casting out for something to do so you want them to contact these people and ask ? You want people who have had success with anti virals to renounce their experience because it isnt the same as your experience? People here have serious problems and are seriously looking for clues not having sophomoric debates.
     
    • Agree Agree x 1

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