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Recommendation for antiviral DR in northeast

Discussion in 'Your Living Room' started by Tomaso, Jul 3, 2019.

  1. Tomaso

    Tomaso New Member

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    Unfortunately I found out Dr. Gacek is retiring so I can't get in there to get put on antivirals. I sent the information to the Dr i'm seeing now and when the information was fresh in his mind he was considering it and specifically said we can try antivirals or steroids but not both at the same time. Now he didn't even respond today to the question when I mentioned that, but rather chose to ignore me completely.

    I've been dealing with menieres for two years. I can get anywhere from 3-7 vertigo bouts a year that are brutal. I'm absolutely desperate to find a Doctor in the northeast that is willing to prescribe antivirals. Can anyone recommend one.

    I've done a tremedous amount of research over the years and the most positive information i've come across is the antiviral approach. Everything else seems to be horror stories or invasive surgeries or procedures. I know about the JOH regimen, but i'd rather just cure this problem.

    I tried to order acyclovir online, but the company was masquerading as a canadian pharmacy when in reality it was a company in india and indian produced acyclovir. I don't trust it at all. I'm sure if this continues I will get fired from my job. I constantly hear people say they can't do that, but i'm certain they will.
     
  2. Dario

    Dario Member

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    Hi Tomaso, so sorry to hear about this terrible situation. I am in Australia so things are a little different here in terms of what we are prescribed. I haven't come across anybody that is on antivirals for MD - most people are put on Betahistine AKA Serc. Have you tried these?
     
  3. Tomaso

    Tomaso New Member

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    Hi Dario, I read about betahistine but I just want to get this over and done with before it gets worse. I had two vertigo attacks in two weeks. I believe the cure is antivirals and there is scientific proof of it. There was a japanese study, Gacek's and a I saw someone mention the tampa bay institute of hearing mentioned it or promotes it now.

    The vertigo is the worst i've ever felt in my life. It is truly horrible and feels like my life is on stand still until I get it fixed. I'm about to build a house but the financial aspect of losing my job has got me worried.

    The brain fog is also brutal. I will say the steroids lifted the brain fog and my mind never felt so clear it was a truly amazing feeling.
     
  4. Dario

    Dario Member

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    Please, if you do manage to get your hands on antivirals and you cure the MD please let me know by replying to this specific post or emailing me [email protected]

    I would be very appreciative
     
  5. June-

    June- Well-Known Member

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    Try your family dr.
     
    • Agree Agree x 2
  6. Tomaso

    Tomaso New Member

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    I'll try that. I've read that certain brands work better. I never saw which brands of acyclovir work better or I don't remember, does anyone know?

    I think it would be hard to find a family Dr. Willing to prescribe 3000mgs of valtrex per day, but i'm willing to try.
     
  7. June-

    June- Well-Known Member

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    I never took valtrex. I took acyclovir and later famvir. With acyclovir i took 400 mg 5 times a day spread throughout the day. It worked for me. My family dr knew the ents were out of ideas, thought the acyclovir was not very risky and was worth a try. We both knew it was just something to try. I was lucky, it worked.
     
    • Agree Agree x 1
  8. Tomaso

    Tomaso New Member

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    Thank you for the info. How long did you take it for?

    You're doing a great service by posting on here long after being cured. I've read some of your posts.
     
    • Agree Agree x 1
  9. Pa Cowboy

    Pa Cowboy Member

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    • Like Like x 2
  10. California Sun

    California Sun Active Member

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    Question: Did the antivirals put an end to all of the symptoms or just the vertigo? The surgeries I had many years ago put an end to the vertigo so far, but the other symptoms are still problematic.
     
  11. June-

    June- Well-Known Member

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    I never had vertigo. The antivirals got rid of horrible distortion, relentless LOUD tinnitus, other strange hearing problems and phantom noises. These hearing problems had beem 24/7 for 9 months. AVs also stopped some odd balance issues such as nausea caused by certain sounds, occasional problems like the world slanting to the right, and a feeling of just not quite steadiness.

    I also regained most of my lost hearing and lost the fullness. I always thought allergy shots helped with these two.
     
  12. Rebecca

    Rebecca Member

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    Question, Did the antiviral have any side effects for you? I have been taking Valocyclovir 500mg 3 TD for a couple months. I also have been taking Betahistine, water pill, Vit. B6 & 5, L-Lysine, and on an extreme diet of no salt, low sodium, no sugar. Thought I might be doing a "little" better with all the MD symptoms, but last night I started having vertigo, though not as severe as I had it when first diagnosed 19 years ago. So, not sure what's going on. Also have been having stomach & bowel problems. That could be caused from all the stuff I'm taking. But, wondered if you have had any side effects? Thanks.
     
  13. California Sun

    California Sun Active Member

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    I've never taken antivirals. That's one of the few things I haven't yet tried. I'm not thrilled about adding yet another med to what I already take and just trying to find out others' experience before I decide to take them--if I can even get them. I may try the L-lysine since I can get them OTC. I've taken diuretics at different times over the years and the experience has been the same each time--they seem to help for short time and then stop. The B5/B6 doesn't seem to have made a difference. Diet has never made a difference one way or another as far as Meniere's goes. I follow a low carb/no sugar diet for other reasons and have never been one to eat a lot of salt--just because I can easily taste a small amount of salt. The low carb/no sugar diet makes me feel generally better overall but has no effect on the Meniere's.
     
  14. Jimii

    Jimii Member

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    I will be seeing a new specialist next Wed. at UConn. I will certainly ask him about anti-virals.
    I will let you know next week. I don't know if Farmington, CT is too far for you?

    Jim
     
  15. David Ash

    David Ash New Member

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    Hi June, Can I ask how you are sgetting on with the anti Vir4als, are they still doing their job and helping?
     
  16. Tomaso

    Tomaso New Member

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    Does anyone have the cover page that I saw posted on here to give to a Doctor when handing them the study? I also found another study with an italian doctor. I will like it later this week. There was also a japanese study as well.
     
  17. Tomaso

    Tomaso New Member

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    I have the study. There was a well written short and to the point cover page that was to be handed to your Dr with this study. It was an idea I read off here before.
     
  18. Tomaso

    Tomaso New Member

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    I'm sorry for not following up sooner. I had full relief from vertigo attacks and tinitus in my right ear by being prescribed Valacyclovir in the recommended dosages in the study. My neurologist on my first visit actually decided to try it without even reading the full study, but we went over some key parts and the doseages. He had never come across menieres and didn't have anything to offer I guess.
    I believe though that I messed up by not continuing the maintenance dose as required. I honestly had never been on a prescription in my life up until that point and I didn't know it was as simple as making a phone call to the Dr office to get another. I ran out and wasn't able to continue the maintenance dose for a period before my next visit. If I remember correctly it was only a short period, but i'd never understood the whole point of the maintenance dose. I guess after dosing 3x a day then 2x a day only one dose a day is needed for the drug to continue gettting past your blood brain barrier.
    I don't know if dropping the ball on the maintenance dose is the cause of the resurgence, but my attacks aren't as frequent now. Ringing is pretty much a constant. I usually work in very loud environments around maintenance machines and am often using power tools that are loud. It's sometimes impossible to even realize your ear is ringing until you're in a quiet place at the end of the day. Thankfully it hasn't been as bad as it was on occasion where it was ringing so loud it was absolutely unbelievable.
    I have to say the story by the pilot stating that you must take Valtrex at least in my case seemed to be the truth. I ran out of money for the non generic, because I have a high deductible health plan. I tried to start all over again at one point with a generic, but it wasn't the same at all.
    After spending time reading the last couple days I wish I had just gone to see Dr. Rausch in Massachusetts for a gent injection. I'm at the point where I think this is the next step, but he's almost four hours away. I'm in my mid thirties and i've dealt with this for four or five years now. I can't even remember honestly. It scares me to think that it may only get worse by not getting it taken care of as soon as possible. I can't believe some people get vertigo so bad from menieres they drop to the ground.
    As much as I hate to admit it, but I believe a career change would also help tremendously. I work insane hours for nine months out of the year. I don't have a steady sleep schedule, nor a good diet.
     
  19. Tomaso

    Tomaso New Member

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    I should also state that my reasoning for going with Valacyclovir was a stupid one. I was so desperate at one point that I ordered acyclovir from India to try and beat this, but it didn't provide the necessary relief.

    I've even tried BHT at one point because I was so scared to lose my job. I can't remember if it provided any relief honestly or what doseage I was taking.
     

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