"Researchers may have discovered a plan to disable Meniere's disease"

Discussion in 'Your Living Room' started by Donamo, Dec 7, 2013.

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  1. Vicki615

    Vicki615 New Member


    I appreciate you asking James and of course my disgust and frustration is not aimed at you:

    She did not answer the question, she just regurgitated that viral infections in the ear do not reoccur, I would say vertigo attacks, tinnitus, etc etc for almost 50 years constitutes reoccurrence.

    I won't even justify her explanation of the placebo affect with a response ;(

    I can really feel for Dr. Gacek how frustrated he must be knowing how much antivirals help most MM patients.

    Since she is involved with MM research I was really hoping she would open her mind up to this and do us some good. Hopefully what she is doing will help the others who do not get helped with antivirals.
     
  2. Vicki615

    Vicki615 New Member

    JOH [email protected] your sarcasms, but to be honest I feel like crying after reading her response.
     
  3. Donamo

    Donamo Guest

    Thank you James for your efforts on this, much appreciated! Nice of the doctor to take the time to respond.

    So much conflicting information. I think I remember reading also that some people (corpse) have the herpes virus in their ear and never had Meniere's. That seems to conflict with what she said also.

    Personally, I am not convinced antivirals are the complete answer. I too have found some relief from antivirals, but I doubt that it will last. I think there is quite a bit more to it.

    Sigh, its a rotten disease.
     
  4. jaypr

    jaypr New Member

    The more I think about my experience of having both menieres and mav the more I feel that my menieres burnt out leaving me with MAV. I say this because of the gradual hearing loss that menieres causes that I doubt MAV can cause.

    So I agree about that part of the reply James received, but because so many people have good results with Antivirals or Llysine I can't see why the reply would completely discount repeated virus related flare ups. It's sad that so called experts have closed minds. To say that its the placebo effect is an insult to many people and is very frustrating for the sufferer who has had success.

    It took me a while to realise that my success with trigger avoidance was not the only way to find relief. Everybody is different. It would take a so called expert to experience menieres and find success through a certain treatment or regimen to open their closed mind.
     
  5. Vicki615

    Vicki615 New Member

    I agree jaypr, it is frustrating, made me feel she invalidated all of us who get successful relief from AV's after years of suffering. She answered w/o thought when James told her people with her definition of MM have been helped by AV's, she just spit out her rationalizations w/o really thinking about what he said. It made me feel very sad.
     
  6. nicmger

    nicmger New Member

    It seems to me that this doctor, like a lot of them, is doing her research with a preconceived theory and as a result is not open to alternate conclusions. This is most likely why most research on Meniere's ends up being controversial because people go into it trying to prove what they have already "figured" out. Problem is that in all cases it is not going into things with an open perspective. Plus, since they (all of them) have yet to find any true common demoninator with all patients isn't is very probable that there are multiple causes dependent on certain situations and therefore different treatment protocols are to be embraced and accepted.

    I was encouraged that this doctor was "researching" this as it make me feel a bit of hope that not everyone thought we were a lost cause. But to completely discount success proven and demonstrated with a large percentage of cases seems to negate research. It would seem to me that instead of discounting it she would work with a doctor like Dr Gracek and try to get some of his success patients to undertake some of her testing to understand "why" in this group of individuals it works.

    Disappointed. I have never taken anti-virals (doctors won't prescribe) so I don't take it as personal but from an aspect of one sufferer it is very disappointing to see - yet again - the complete arrogance that a doctor has....not sure why so many believe they are God.
     
  7. Chinook

    Chinook New Member

    I'm glad there is ongoing research on many fronts. But the comment about placebo effect was discouraging. I'm firmly in the camp that antiviral medications do help, and can have long lasting positive effects. I've gone through significant periods of remission and have regressed when I've stopped taking them. While I believe this is the answer for me, I'm also aware that each person's experience with meniere's or its variations is unique and as such may be caused by something other than a virus and requires another course of action. We know this by the comments shared throughout this forum. Why is it that the doctors can't seem to get this?
     
  8. CarolineJ.

    CarolineJ. New Member

    People ... just because the Dr. feels that it is a placebo effect don't let it invalidate your experiences with AV's.

    If they have helped you ... who cares what others think.

    Attacking her and her research is exactly why the professionals don't come to this or many forums. Let her do her work and hopefully she will learn something new that will benefit us.

    Each researcher has their own theory that they are researching. As someone mentioned ... just be glad there is research going on. :) Hopefully this research will help others that are not helped by AV's :)

    Until then, carry on with what is helping you.
     
  9. CarolineJ.

    CarolineJ. New Member

    Thanks James. Interesting to know her thoughts.

    Again with the Migraine reference! I wonder why AV's help people with Migraine? This I find incredibly interesting.
     
  10. Donamo

    Donamo Guest

    The one research project that I was really disappointed about was the one proposed by House Ear Clinic to investigate the use of Famvir antiviral. They cancelled it due to lack of funds. It seems it was being privately funded by House.

    You know, if one was prone to conspiracy theories, research grants such as the one Dr. Foster probably applied for and received to do her research would be harder to come by if they could fund a much cheaper, simpler, anti-viral double blind test. I hate to say it and I do appreciate what Dr. Foster is doing and how she communicated with James, however, money always plays a starring role in any research endeavour.

    The more complicated and long lasting the project, the longer one can live on the grants. I once had dealings with a person involved in MS research. He said, "can you imagine how many people would be out of work if we ever found a cure."
     
  11. Vicki615

    Vicki615 New Member

    "I once had dealings with a person involved in MS research. He said, "can you imagine how many people would be out of work if we ever found a cure."

    In essence that is what someone posted that Dr. Gacek said:

    He suggested that one reason for the community not embracing the viral theory is that it eliminates the need for surgery - which is a big business. I think he was only halfway joking
     
  12. CarolineJ.

    CarolineJ. New Member

    Sadly ... this might be the case Vicki :(
     
  13. Vicki615

    Vicki615 New Member

    I wouldn't doubt it Caroline, the medical field is big business ;(
    I mean not 1 cure for any type of cancer yet either??

    My cousin who is a research biologist told us once, researchers apply for grant money, get awarded the money and after that no one ever check ups on what they do with the money after its awarded, some take it and use it for personal reasons, trips etc etc. I was appalled, but not shocked.
     
  14. gfsound

    gfsound New Member

    Perfectly stated, Caroline!! I recently started Topamax (migraine med) and (restarted) HCTZ and my symptoms are FAR more under control than any time I was on a ton of anti-virals (acyclovir and high doses of famvir WHILE doing JOH regimen). And if you've read my one thread, you know that I've tried everything from the "best" Dr.'s from House to John's Hopkins, to NUCCA chiro (and several other types of chiro), to having all of my amalgam fillings removed, to Chinese medicine, to allergy testing/shots/elimination techniques, to food elimination, to energy healers and howling at the moon (literally), and everything in between. We need to be open to ALL research- not just that which supports the solution that works for one individual. Even if I get total symptomatic control from one protocol, I've learned enough from my short time here that one size simply doesn't fit all (to quote an oft repeated refrain). I don't understand why it always has to become an argument over THE cause of MM; can't we all just agree that we don't know, and all avenues should be investigated until no one on the thread is suffering anymore? I know it is MY wish for the new year that this forum doesn't even exist come 2015 because everyone has found relief.

    Happy New Year.
     
  15. Vicki615

    Vicki615 New Member

    We are aware antivirals do not help everyone, I don't feel we are arguing about the cause of MM or arguing at all, I am not sure where you got that from, the disappointment and frustration came out of her saying the relief people get from av's is a placebo effect and her also saying if we are getting relief from AVs then we do not have MM, even those our symptoms match definition of MM that she stated.

    I had also stated in a previous post, that hopefully whatever research she is doing will help those that do not get relief from antivirals.
     
  16. james

    james ''Everywhere I go there I am'' GS

    For what it's worth,I also posted the hypothesis at the Mav website and this is what Scott posted:

    ''James - I ran this past a highly esteemed friend of the forum. His thoughts were that it was a nicely laid out but not a new idea. The rationale for using Serc (betahistine), the most widely prescribed Meniere's medicine worldwide, is to improve and stabilise inner ear blood flow. He suspects this is the background pitch for a pharmaceutical company interested in inner ear drug delivery, probably with a neuroprotectant candidate drug.''
     
  17. james

    james ''Everywhere I go there I am'' GS

    I have never heard the term -neuroprotectant, if you google--neuroprotectants drugs in menieres,lots of interesting reading comes up.

    Here is just one page that I found.

    http://www.quarkpharma.com/qbi-en/products/rsrchpipeline/

    Neuroprotection and neural regeneration program.
    Included in this category are programs in diseases of the central nervous system, and diseases of the eyes and ear, in particular those diseases where nerve cell or neuron protection and /or axon regeneration is important, such as spinal cord injury, optic nerve regeneration, neuropathic pain, hearing loss and vestibular diseases such as Meniere’s disease, and other central nervous system diseases. siRNA delivery to the neurons was demonstrated in several disease conditions and we are developing a novel non-invasive delivery to the back of the eye, inner ear and brain. Quark has shown proof of concept for end points, neuroprotection and neural regeneration, in spinal cord injury model for its primary siRNA drug candidate for neuroregeneration and neuropathic pain.
     
  18. james

    james ''Everywhere I go there I am'' GS

    Thanks for the update gfsound glad that you are doing better.
    I would just like to add that if I was a newbie or if I was having lots of attacks--I would try to get the antivirals--but--I would also ask my doctor to treat me as if I had migraine.That not being possible I would try the Migraine diet--get the book that used to be talked about a lot here ''Heal Your Headache by David Buchholz''.
    Jaypr myself and many others have been helped by being treated or acting as if we have migraine.I would also read the thread in the database as there is so much overlap with the 2 conditions.

    http://www.menieres.org/forum/index.php/topic,29072.0.html
     
  19. james

    james ''Everywhere I go there I am'' GS

    I also want to add if you read the thread,don't be put off where it goes off track for a couple of pages and people are arguing ;D --it does get back on track and is very much worth reading to the end.
     
  20. Vicki615

    Vicki615 New Member

    That would explain a lot of her responses, thank James.
     

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