Meniere's and a Virus Connection?

Discussion in 'Your Living Room' started by Caribbean, Jul 8, 2007.

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  1. joy

    joy New Member

    Re: Virus Connection?

    Lillyrose...what a great post! Absolutely no head-chopping from me, and please don't go into a coma just yet, there might be more of this wisdom inside that brain of yours and if you get comatose, we won't benefit from it!!! ;D ;D
    Doctors are human. Some are idiots with special letters behind their names. Others are terrific humans with lots & lots of knowledge & passion for finding cures. Whatever research we do ... in my opinion, it's always good to share it with our docs. What they do with the info is up to them. You guys keep looking and reading and studying and sharing opinions ... I personally appreciate it very much and my "terrific human" doc seems to be grateful, as well.
    :)
     
  2. burd

    burd New Member

    Re: Virus Connection?

    Problem is, is that with meniere's it seems there are a number of factors that may be the reason for it's existance, such as the possibility of it being a physical defect, and that many factors set the symptoms in motion: allergies, viruses, head injury, etc.

    That only would seem to complicate diagnosis, and also that there is no cure, which to me goes hand-in-hand with the physical defect theory, which comes down to treating the symptoms on a very personal level due to whatever is your reason for the symptoms being there in the first place.

    We are confused, doctors are confused, but a good doctor won't speak as if he/she knows all, and that his/her personal theory is the reason for all meniere's symptoms.  A good doctor will listen.  If they don't know where to go with it, they will have no problem sending you to someone else, or consulting with colleagues.  Yes, they are hired by us, which also gives us the responsibility to "fire" them if we don't like their performance.

    I've heard that doctors listen mostly to just the first few seconds of our conversation with them to start forming their own opinions, and that alot of unnecessary talk only gets minimal attention and focus, so make sure that you pack as much punch into that first 30 seconds or so about your situation.  Save the less important things for minutes down the line after the important things have been established. 

    Always take notes if you think you'll forget something, highlight the most important issues, and do take a friend of spouse or whoever you trust and knows your situation, to help you remember, not only what the doctor says, but anything you may be forgetting.

    P.S. Nice post Joy.
     
  3. Soccermom

    Soccermom New Member

    Re: Virus Connection?

    The problem with the Acyclovir theory is that some doctors firmly believe it in (Dr. Gacek), and others think it's hogwash. Some are willing to try it, some aren't.

    The facts are, whether the Dr. you go to or the next Dr. you seek out, believes in it or not....It DOES help some people. Maybe those people don't have true Meniere's, maybe they do.

    Hopefully in time, Drs. will start mentioning more readily things like Acyclovir, Nucca, Trigger Points, John of Ohio, etc., etc.

    Until then, and even after that....I for one am so thankful to have a place like this to go to for support, information, new ideas. It really gave me hope that wasn't there before.

    Laura
     
  4. jewels

    jewels New Member

    Re: Virus Connection?

    Lilyrose,
    We need to be our own advocates. My sister has a masters in nursing; she says the medical world is very slow to respond to new research and when we are dealing with specialists there is usually a lot of ego involved. 15 years ago most doctors were saying we get all the vitamins we need from our food and now most will not say that and do recommend certain vitamins.

    My sister didn't want me to go to an ENT she kept insisiting that I needed to find a good internal medicine doctor because specialists get narrowly focused___if you're hammer everything looks like a nail. I wished I'd listened to her but instead got caught up in a whirlwind of visitis to different ENTs. Doctors don't know everything and we can be selling ourselves short by believing they do.
     
  5. lillyrose

    lillyrose Life is short live it not diet.

    Re: Virus Connection?

    Thanks Joy, Burd, Soccermom,Jewels.....you are all right.
    This is a great place to come to learn, listen and release.

    Many blessings to you all.

    lillyrose
     
  6. Caribbean

    Caribbean New Member

    Re: Virus Connection?

    Thats the sixty four thousand dollar question Lillyrose!...WHY?

    good post...
     
  7. Dave77

    Dave77 New Member

    Re: Virus Connection?

    To “SamC” aka “Ehydrops”?
    I would also like to extend a welcome or perhaps more accurately, welcome back. Your style, knowledge, and background remind me of posts made by Ehydrops a year or so ago. I could be wrong but in any case, this forum needs more people like you to offer more of the science based causal theories of this disease.
     
  8. princessmommy

    princessmommy New Member

    Re: Virus Connection?

    Interesting post. My ENT said that I most likely got Meniere's as a result of a virus that settled into my ear. At the time I was diagnosed, I had a terrible upper respiratory virus and the norwalk virus (like the WORST stomach bug you could have!). I was "cured" of the viruses for about 6 weeks and then had my first attack, which was absolutely awful. My husband took me to the ER because I was so very sick. No one diagnosed me with Meniere's for another month. My dr. referred me to an ENT who took one look at me and told me it was Meniere's. Now I see an otologist (just ears) doctor. Makes you wonder. Viruses can do weird things.
     
  9. burd

    burd New Member

    Re: Virus Connection?

    Excellent post.
     
  10. joyoncnrse

    joyoncnrse New Member

    Re: Virus Connection?

    I have had Menieres symtoms since 2003 , the same year I had shingles on my face (close to my left ear) Interesting that I lost hearing in that ear and have struggled with Menieres since-- getting much worse this year. The specialist that I went to in Nasvhille, Tn def. thinks there is a correlation between the virus I had and Menieres . I think that as well as I NEVER had any type problem until my bout with shingles.. I have had alot of stress this year and I think the stress has triggered my symtoms to become more chronic.
    Paige
     
  11. Soccermom

    Soccermom New Member

    Re: Virus Connection?

    Paige,

    Have you thought about trying Acyclovir? I hope so, and I hope your Dr. is receptive to it.

    I often felt that the fact that stress can aggravate symptoms showed that it could be viral too (stress can cause herpes outbreaks for instance).

    Good luck and keep us posted!!!

    Laura
     
  12. MsWorldNV

    MsWorldNV New Member

    Re: Virus Connection?

    I am taking Acyclovir and for some odd reason, my symptoms are getting WORSE. I suppose this could mean 1 of 2 things. First, I don't have a viral connection and The drugs are unnecessary. 2.) I do have a viral connection and my worstening is the meds and my immune system fighting off whatever is attacking my inner ear, heightening my ailment. Any suggestions?
     
  13. jewels

    jewels New Member

    Re: Virus Connection?

    MsWorldNV
    I think if you email SamC, he posted lots of good info on previous page he might be able to give you some answers. He was the one who personally helped me. He's an excellent resource, has studied all the science.
     
  14. Caribbean

    Caribbean New Member

    Re: Virus Connection?

    My suggestion for what its worth, would be too continue with the Acyclovir regime so that you can be sure if your MM is virual connected.
     
  15. SamC

    SamC Guest

    Re: Virus Connection?

    See my PM to you ... I have a scientific approach to this. First your TMJ is a clue, and second your Meniere's label doesn't tell us anything definite. Meniere's means something different to everyone and since it has no cause, it cannot be treated, however a proper diagnosis of what you suffer will lead to a treatment regimen.

    Several vestibular and brain disorders can be caused by virus; the many faces of the herpes virus being most common. There is no cure for herpes virus and at best can only be arrested or held dormant. Acyclovir or salt of Acyclovir (Valtrex) is most effective on vestibular virus.

    Acyclovir does not directly effect Endolymphatic Hydrops, only arrest the virus that effects or damages nerves that may result in hydrops or agrivation of existing hydrops. Hydrops is for life ... no cure.

    You may or may not see any change in symptoms from taking acyclovir, but if you have vestibular disorder from virus, then best to stay on a lifetime of daily acyclovir. Stopping and starting acyclovir when symptoms are noticed, is dangerous and can lead to permanant nerve damage. I am proof of that from MRI and other diagnostic test. For the last almost 5 years I have been on daily acyclovir (and Valtrex at times) and no progression in nerve damage has been found. My white matter has stablized.

    Visit my webpage for more infomation and a short version of my story. Best wishes to you all, Sam
     
  16. Caribbean

    Caribbean New Member

    Re: Virus Connection?

    Please post your web page Sam...
     
  17. Dave77

    Dave77 New Member

  18. SamC

    SamC Guest

    Re: Virus Connection?

    Thanks Dave and Larry. Terry of Oregon makes a valid point about not being any one cause and treatment for what she calls Meniere's. There are many causes of vestibular disorder with trauma and virus being the most common. Allergies are many times connected with virus and disappear with acyclovir use, sometimes not.

    It is important to remember as I stress often that taking acyclovir is not a simple one rule applies to all issue. It is NOT a cure. It only puts the virus in recession. Also Lysine does not replace acyclovir.

    Yes, Dave I have used several names here over the years. Sam is my real name and for those that don't like me, it makes my replies easy to avoid. LOL! Sure glad to see some credence given to anti viral therapy now as when I was first on this forum almost 5 years ago, it wasn't very popular and usually stirred up hateful responses. I do admit to being radical, but it has gotten many to think ... the first part of any treatment process.
     
  19. Caribbean

    Caribbean New Member

    Re: Virus Connection?

    Boy, can I ever relate to that!!!!! :)
     
  20. twinklenani

    twinklenani Guest

    Re: Virus Connection?

    Thanks for the info. I don't have warts or cold stores, but I do have active chroic Epstein Barr virus and have been on L-lysine for years and I still have menieres???
     

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