meniere's caused by a virus-please read

Discussion in 'Your Living Room' started by Skye76, Jul 7, 2009.

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  1. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    <<<there is almost irrefutable evidence that a virus is the primary cause of this disorder....almost? I to would like to see some documentation into this research. I would definitely make an appointment just to discuss this with my ENT. >>>

    I agree with Seadog on this one. I personally believe that there is a viral connection, but my doctor does not. For every study I can find that shows that there is anti-viral success, there is another that says results are "inconclusive". Would that there be the defintive study of a hundred or hundreds of meniere's patients done with significant controls and objective measurements to "prove" that a virus is the culprit and that antivirals are conclusively the "cure". If I could wave a copy of such a study done by a reputible organization and published in a reputable medical journal, I think I could get my doctor's attention.

    As far as my doc is concerned, there are too many "anicdotal" testimonies of "symptom improvement" that could just as likely be placebo effect or characteristic cyclical spontaneous remission, only to be followed up by a resurgence of symptoms. If antivirals are not a permanent "cure" and simply another form of "continuous management of symptoms", how are they much different from relatively high-dose Lysine which is part of the JOH regimen? Trust me, nobody would love to find a silver bullet more than I would.

    Tony
     
  2. nassman

    nassman Guest

    What I find extremely interesting is that as soon as someone says that lysine or acyclovir has helped them (although they still have tinnitus, hearing loss, and vertigo) John of Ohio and caribbean jump in immediately to comment how beneficial the "regimen" or acyclovir is.

    As soon as reputable, long-standing members like gardenfish or others say that they receieved no help at all from either, both JOH and Caribbean are nowhere to be found....

    Perhaps teh best post thus far (and the best one I have read in a LONG time is what Trish said. I quote her below:


    Brilliant! Correct! Most likely what is happening to those that do find relief. They never had meniere's, but rather, labyrinthitis.
     
  3. June-

    June- New Member

    It will be interesting to see what the new study is all about.
     
  4. Chinook

    Chinook New Member

    What I find extremely interesting is that as soon as someone says that lysine or acyclovir has helped them (although they still have tinnitus, hearing loss, and vertigo) John of Ohio and caribbean jump in immediately to comment how beneficial the "regimen" or acyclovir is.

    As soon as reputable, long-standing members like gardenfish or others say that they receieved no help at all from either, both JOH and Caribbean are nowhere to be found....



    Nassman,
    What I find interesting is that rather than having a general discussion about acyclovir or the JOH regimen, it seems to become a personal issue for you and your post becomes your vehicle to knock people. We all have different and valuable opinions, including you, and I only ask that you to please leave the names out of your comments.

    I for one am grateful to have this board available and all the folks who post. Although I don't post often, I visit often for support and to learn from others' experience and research. While my experiences may not be exactly the same as everyone else's (who's is?), I pick and choose what I feel is pertinent to me. I wish you would do the same and show more respect to those with whom you might disagree.
     
  5. nassman

    nassman Guest


    I wish you realized how incorrect this statement is....
     
  6. June-

    June- New Member

    Please tell me.
     
  7. Gustav123

    Gustav123 Life,enjoy it.

    I am confused as the labyrinthitis is a balance disorder which may or may not include hearing loss and tinnitus.
    So i assume you are saying if one had menieres it also by definition includes some labyrinth involvement. She may mean that she has minimal vestibular symptoms.
     
  8. nassman

    nassman Guest


    And why is it hard for you to understand that all I ask for is a more balanced reporting on the benefits/or lack of benefits of acyclovir or JOH's "regimen".

    Taking acyclovir but then coming on here a few months later and saying, "I still have bad tinnitus, I still have daily dizziness, but my brain fog is a little better" is NOT, in my opinion, good enough. Yet, so many people claim that they are helped but only feel minimal relief....relief that is, quite frankly, due to the placebo or "high hopes" effect.

    The ONLY way I will ever believe that the JOH regimen or acyclovir works is when tens of thousands of individuals have been tested and documented to have experienced the following, in this order:

    1) They have had all ENG tests conducted by a reputable neurotology center and all tests point to definite diagnosis of meniere's.

    2) They have all the TRUE symptoms of menieres: a) violent EPISODIC vertigo, b) low pitched roaring tinnitus, c) hearing loss as time progresses, and d) fullness or pressure in the ear preceding an attack.

    3) All treatments possible have been tried (i.e. steroid injections, meniette device, dietary restrictions, SERC, etc.) and nothing works.

    4) Then, the JOH regimen or acyclovir is tried and ALL symptoms are relieved by at least 80% or more on a PERMANENTLY CONSISTENT basis.

    Then, yes, I will accept that the JOH regimen and/or acyclovir is a successful treatment option that gives people real, and significant, remission from their horrific meniere's symptoms.


    Many of the people here that take the JOH regimen are also drugging themselves with valium and/or other drugs. How do I know that their relief is not from the valium? Do you?
     
  9. nassman

    nassman Guest

    [​IMG]
     
  10. June-

    June- New Member

    I have no vestibular symptoms but Nassman will find fault with that statement as well since he contends that the cochlea is part of the vestibular system. Semantics aside I have no balance problems and am diagnosed with Cochlear Hydrops, a variant of Meniere's Disease as far as the Disorder is currently understood which according to my specialists is not very much by the experts. Since Meniere's is by definition a diagnosis by exclusion, when all the causes are identified it will cease to exist! Yay for that day! Meantime I think it is very silly and unproductive to talk about the 'real' Meniere's since there is no definitive test for it. The focus in my opinion ought to be to find as many causes and cures for this disorder as possible till they have all been found and the disorder disappears. I am eager to see what the study shows. btw, the acyclovir did wonders for my tinnitus as well as distortion and seems to have halted the hearing loss. Some problems remain.
     
  11. June-

    June- New Member

    So how does this mean there is something wrong with my labyrinth? My problem as far as is known is in the cochlea and the eustachian tubes. As I read that diagram the labyrinth is the dark pink part that does not include either of those.
     
  12. Stick

    Stick Guest

    Maybe it's not good enough data for you guys but I know that I took acyclovir for 3 months stopped, then started it again when in a string of vertigo attacks. So far I have had at least 1 attack per week over the last 3 months while taking acyclovir 800mg 4x day. Thats good enough data for me to say it's not working and also tinnitus and hearing loss fullness are the same or worse.

    On the other hand I agree having a virus in your inner ear is better defined as labyrinthitis not MM since the cause is known, especially in the case of Ramsey Hunt Syndrome.
     
  13. carolyn33

    carolyn33 New Member

    Nassman, are you always so negative? My prescription intake has lessened since taking the vitamins. I'm not interested in your outrage about those of us that believe it helps. If it doesn't and WE believe it does how does that hurt you? Have you even tried it? I was willing to try it BECAUSE they were vitamins and not prescriptions. What's with you anyway? I certainly can't be mad at the world like you seem to be and exist, at least JOH is trying to help, what have you come up with besides negativity? We already know some of us have it worse than others and maybe it WON'T help everyone... I don't understand why you get so frustrated when someone doesn't agree with you.
     
  14. Gustav123

    Gustav123 Life,enjoy it.

    Those hardest to love often need it the most.
    G
     
  15. carolyn33

    carolyn33 New Member

    No kidding Gusav123 good thing there's a spirituality section.. i need to go and back and find something to understand those that can't be happy for others. It's all good I guess we all can't be the same.
     
  16. tucker

    tucker The Meniere's DVD Guy!

    Many of the people here that take the JOH regimen are also drugging themselves with valium and/or other drugs. How do I know that their relief is not from the valium? Do you?

    Nassman: I have wondered that same question myself.
     
  17. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    Stick mentioned "Ramsay Hunt Syndrome":

    Signs and symptoms of Ramsay Hunt syndrome include:

    A painful red rash with fluid-filled blisters on your eardrum, external ear canal, the outside of your ear, the roof of your mouth (palate) or your tongue
    Facial weakness (palsy) on the same side as the affected ear
    Difficulty closing one eye
    Ear pain
    <Hearing loss>
    <Ringing in your ears (tinnitus)>
    <A sensation of spinning or moving (vertigo)>
    A change in taste perception or loss of taste

    Take away the "external" ramifications like the blisters on the outer ear and face and you have some pretty familiar sounding symptoms. Who's to say that all of this can't be going on internal to the inner ear?

    ....and the debate continues. Someday, somebody will figure it all out but I doubt that I'll live that long. Meanwhile, I'll keep drugging myself with lemon bioflavonoid and lysine and valium, and diuretics, and etc, etc, etc and hope for the best.
     
  18. June-

    June- New Member

    Here is an image indicating that the labyrinth and labyrinthitus involve the cochlea so I stand corrected. http://services.epnet.com/getimage.aspx?imageiid=7582

    What I wonder is if it is easily confused with MM why labyrinthitis is not assumed and ruled out before diagnosing MM. Does anyone know how labyrinthitis can be ruled out? Do our doctors routinely rule it out? What is the difference between it and MM in terms of symptoms or test results?


    from http://tinyurl.com/mm4vtl
    Labyrinthitis








    Definition
    Labyrinthitis is an inflammation of the labyrinth in the inner ear. The labyrinth is a system of cavities and canals in the inner ear that affects hearing, balance, and eye movement.

    Labyrinthitis

    © 2009 Nucleus Medical Art, Inc.


    Causes
    Causes include:

    Viral or bacterial infection (most common cause)
    Head injury
    Tumor in the brain or head
    Disease of blood vessels
    Stroke
    Nerve problems
    Side effects of drugs, including:
    Aminoglycoside antibiotics
    Aspirin
    Quinine
    Risk Factors
    A risk factor is something that increases your chance of getting a disease or condition. Risk factors for labyrinthitis include:

    Current or recent viral infection (especially a respiratory infection)
    Allergies
    Smoking
    Drinking too much alcohol
    Stress
    Symptoms
    The symptoms can range from mild to severe and last for days or many weeks. Symptoms are usually temporary, but rarely, can become permanent.

    The most common symptoms are:

    Vertigo (spinning sensation)
    Dizziness
    Other symptoms may include:

    Fatigue
    Nausea and vomiting
    Hearing loss
    Involuntary eye movement
    Ringing in the ear (tinnitus)
    Diagnosis
    The doctor will ask about your symptoms and medical history, and perform a physical exam. Initial diagnosis is based on the symptoms and the results of your exam.

    Tests may include:

    Examination of the middle ear for signs of a viral or bacterial infection
    Hearing tests
    Electronystagmogram—a test of eye movement
    CT scan or MRI scan —to look at structures in the head
    Treatment
    Treatment may include:

    Medications
    Antibiotics (only for bacterial infection)
    Medication to control the symptoms, including:
    Antiemetics—to control nausea and vomiting
    Vestibular suppressants—such as meclizine, to help control loss of balance and dizziness
    Steroids—in limited situations, to help control inflammation
    Anti-viral medication (eg, Acyclovir)– this may be prescribed by your physician
    Note: Without antibiotic treatment, bacterial labyrinthitis can lead to permanent hearing loss or permanent problems with balance.

    Self-care Measures
    Rest, lie still with your eyes closed in a darkened room during acute attacks.
    Avoid movement, especially sudden movement, as much as possible.
    Avoid reading.
    Resume normal activities gradually after the symptoms have cleared.
    Emergency Treatment
    In some cases, nausea and vomiting cannot be controlled. This can result in severe dehydration , which may require hospitalization to receive intravenous fluids.

    Surgery
    Rarely, labyrinthitis may be due to a break in the membranes between the middle and inner ear. Surgery to repair the break may be required. If a tumor is causing the condition, surgery may also be needed.

    Prevention
    To reduce your risk of getting labyrinthitis:

    Seek prompt treatment for any ear problems or infection.
    Get medical advice on treating respiratory infections.
    Avoid head injury by wearing seat belts and safety helmets.
    Ask your doctor about side effects of any medication you’re taking.
    Avoid alcohol.
    Take steps to prevent blood vessel disease or stroke. These include:
    Eat a low fat, low cholesterol diet .
    Don’t smoke .
    If you have high blood pressure , get it treated.
    If you have diabetes , work closely with your doctor to keep it under good control.
    With your doctor's approval, exercise regularly .
    Last reviewed November 2008

    Copyright © 2009 EBSCO Publishing. All rights reserved.

    Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

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    As a Catholic hospital, UPMC Mercy abides by the Ethical and Religious Directives for Catholic Health Care Services, as determined by the United States Conference of Catholic Bishops. As such, UPMC Mercy neither endorses nor provides medical practices and/or procedures that contradict the moral teachings of the Roman Catholic Church.

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  19. nassman

    nassman Guest

    Another disatisfied user.

    Thank you for your honesty!
     
  20. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    <<<Does anyone know how labyrinthitis can be ruled out? Do our doctors routinely rule it out? What is the difference between it and MM in terms of symptoms or test results? >>>

    Story my doc gave me when I asked essentially the same question:

    1. Labrynthitis caused by virus or infection USUALLY presents with high frequency hearing degredation in an audiogram versus low frequency hearing degredation with meniere's.

    2. Labrynthitis USUALLY demonstrates a continuous, albeit slow improvement in symptoms over a period of weeks or even months. Meniere's typically presents cyclical on-again-off-again symptoms. Good hearing for a few days or a week, crappy hearing for a few days or a week. Changing tinnitus from barely audible to loud and back again. Periods of feeling bad followed by periods of feeling better and back again.

    3. If there is a significant infection that is systemic, there can be a low grade fever.

    Short answer: If you get better, it was probably labrynthitis. If you don't, it's a pretty good chance it's officially meniere's.
     

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