A laboratory fully devoted to Meniere's disease

Discussion in 'Your Living Room' started by AllisonTaylor, Apr 10, 2010.

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  1. John of Ohio

    John of Ohio New Member

    Funshine,

    I don't think it appropriate for me to post Dr. Brown's communication with me. Right now, I regard this as a private, professional message intended for me, not the entire world. I wish to respect Dr. Brown's professional views and feel that it would be most appropriate to keep our communications private. I don't wish to endanger the integrity of his program in any way.

    But as before, I can say the Dr. Brown's email was very professional and curteous. I haven't yet responded with the details of my regimen that he requested, which I hope will be forthcoming (to him) within a week.

    --John of Ohio
     
  2. Funshine

    Funshine New Member

    Understood John, I am curious as to his comments on your regimine as it has helped so many! Perhaps Dr. Brown will post on this forum in the near future, it would certainly be a treat for all of us, and I feel that our experiences and insights would be helpful to him as well.
     
  3. jim1884again

    jim1884again advocating baldness be recognized as a disability

    I agree with taximom in principle; i.e., you should always ask someone if you can post their email response--I can't argue with the suggestion. I also assumed, however, that when this guy suddenly gets a flood of emails from people who all belong to the same cyber support group, he assumes the imformation he disseminates is likely to be shared (not necessarily verbatim) with many of its members.

    It was gracious of Hank to send an apology but I wonder if Dr Brown was even disturbed by his comments being made public?
    In email communication with strangers 12,000 miles away, one always takes a risk that there are unintended uses or outcomes with their communication. This is just a reality of the world wide web. If Dr Brown was bothered by his communication being made public, I stand corrected. My guess is he isn't losing any sleep over it.
     
  4. Jordan

    Jordan New Member

    On a technical/legal note, the e-mail itself belongs to Hank, but the copyright (the right to publish or republish it) remains with the author (Dr. Brown). It is always important to ask permission to republish e-mails. If permission is not granted, one can summarize the content in his own words.
     
  5. Henrysullivan

    Henrysullivan New Member

    I do not know the extent that he was disturbed, but he did make a point of it, and rightfully so. I did apologize to him privately and do here once again, publically. I was in the wrong and after I posted it, that did occur to me. Yet it was done and most had seen it. I told him that I would not do that again without permission.

    I can say this, that Dr. Brown is looking into why medical research has not ever looked into the evidence that I have presented here for the last 3 years since curing my own Meniere's symptoms. I believe that, and I expect that his next step will be to infact look into this area. There is just too must to explain, about which we have positive evidence right here on Menieres.org, for him to ignore this information. I expect good things to come from his work.
     
  6. June-

    June- New Member

    I continue to wonder how different 'cures' can be tested for efficacy for Menieres if there is no test to identify with certainty that a patient has Menieres. Not all vertigo and disequilibrium is Meniere's. Nor is all sensorineural hearing loss due to hydrops. Not all hydrops results in any hearing or balance problem at all. I think that almost all the cures touted on this board genuinely work but not necessarily for Meniere's or I should say for the same disorder. That is why the debates make no sense to me.
     
  7. Henrysullivan

    Henrysullivan New Member

    June, I believe we have had this conversation before. Meniere's has a null definition. According to medical science, de facto Meniere's is when an MD issues an official diagnosis of the same. Meniere's is what medical science calls it when they throw up their hands and claim that the cause for certain symptoms is idiopathic. The cause must be idiopathic to receive that diagnosis. So in other words, the Meniere's diagnosis is meaningless. It can't help you to know that, that is, unless one can take certain solace from knowing that medical science has thrown up its hands and the only thing they know to do is to alter, or even remove, certain offending tissues.

    But in reality, Meniere's is nothing but symptoms, which do in fact have a cause. That is why I say, "You are your own best doctor." Presently medical science leaves it up to us to determine that cause, even after studying these symptoms for over 100 years. And as soon as any of us might determine that cause, according to medical science, we never had Meniere's. This is tantamount a game of hide and seek. It is hidden until you find it, and then it is no longer hidden and you cannot say that it is. Whether medical science realizes it, they are playing a game.
     
  8. Funshine

    Funshine New Member

    I totally agree with June and that is one of the reasons why there are few true clinical trials that involve Menieres. The etiology is unknown, the course of the disorder is uncertain, the symptoms vary and as we all know, the malady may be characterized by remissions for extended periods which may also include spontaneous remission...forever.
    We also know that there is a debate, the scientific arena, as to the mechanism of hydrops, my doctor had indicated that the mechanism is regulated by the sodium and potassium ion exchange through a process called active transport, however, they are not really sure what causes this process mis-fire, or loss its' equilibrium.
    On the assumption of hydrops and based on our varying symptoms I feel that we all have slightly different area of the inner ear effected by the process. I imagine that the inner ear is quite sensitive to pressure, fluid, and electrolyte changes and that each area is highly sensory specialized. So, some of us have the extreme vertigo and others do not. Some of us have the pressure, hearing loss and tinnitus, some of us have all the symptoms.
    The only way that the scientific community can investigate is to actually remove the inner ear and dissect it to see where all this is happening as it is happening. Not a feasible option.
    I am all for hitting this thing with whatever works...it is the only method of control that we have over this truely unknown.
     
  9. June-

    June- New Member

    We are in agreement about it being a diagnosis by exclusion. That doesn't mean, however, that it always has to be such. Medical science can progress to the point where the various disorders and diseases that are routinely diagnosed as Meniere's can be identified both in general and in the particular patient. When success has been achieved at that, then it will be child's play to apply the correct remedy for each of these.

    I think the knock down drag outs we have here about which cure is the real cure and all that are due to the fact that in our laboratory of one or two or a few, we are each looking at a different one of the disorders that is now not identifiable except by exclusion and thus called meniere's. I don't think meaningful results in a medical trial can be found when one drug is tried against a handful of diseases/disorders. THe results will be confusing and inconclusive every time even when the cure being tested is very effective against one of the several things called menieres. That is why I think it is of primary importance that research work on separating and identifying the various things now labeled as menieres and developing a test to confirm the presence of those individual disorder/disease in a given patient. I have the impression that this dr is working on this and I think that is the place to start.

    And yes, I am sure we have had this conversation before.
     
  10. Henrysullivan

    Henrysullivan New Member

    Set before me, seemingly today, is a never ending task.
     
  11. June-

    June- New Member

    I don't follow you.
     
  12. Henrysullivan

    Henrysullivan New Member

    Did you understand my previous post answering yours?
     
  13. June-

    June- New Member

    I understood those facts before you posted them. Did you understand my point?
     
  14. Taximom5

    Taximom5 New Member

    June, I think you and Henry are more on the same side than you are aware.

    When you say that "not all vertigo and disequilibrium is Meniere's," you are assuming that Meniere's can be ruled in or out--and since Meniere's is not truly a disease but a syndrome (a collection of symptoms), that can't truly happen.

    Perhaps we should think of Meniere's as an umbrella disease (for which we will eventually find out the cause), and that Meniere's subtype #1 is caused by misaligned atlas bone, correctable by NUCCA and perhaps other chiropractic techniques.

    Then we could think of Meniere's subtype #2 as being caused by nutritional deficiencies and chemical imbalances, correctable by diet changes and John of Ohio's regimen.

    Meniere's subtype #3 could be the one caused by food allergies.

    And so on.

    Under that scenario, people with subtype #3, for example, might start with hydrops, or with vertigo but no hearing loss, or even just migraines, but because we know the cause, and that that cause is affecting the inner ear somehow, we would also know the cure, and it would still be considered Meniere's subtype #3--it just wouldn't have progressed as far, it wouldn't produce full-blown symptoms.

    SOrry, I wanted to tweak this idea more, but am in a rush.

    Does that bring the two of you any closer?
     
  15. Henrysullivan

    Henrysullivan New Member

    June and I are a spoke or two apart on the wheel. And our wheels are in different planes. June says that we can't test cures for Meniere's since there is no test to identify with certainty that a patient has Menieres, as if Meniere's has a substantive meaning. I say Meniere's does not exist, has no substantive meaning, until they discover its cause, at which time they can devise a test for that cause. Until then a sufferer merely has symptoms.

    Too many people are fooled to believe that they have the same disorder because they have the same diagnosis. In this case, that cannot be further from the truth and it is misleading, almost villanous, for medical science to lable people with these diagnoses without overtly qualifying that diagnosis as meaningless except merely as a label, useful only so that they don't have to read off all one's symptoms when they refer to one's disorder(s). And the real crime of the medical science culture is that they refuse to accept that certain disorders do not have a cause appropriately treated by a medical protocal. And they refuse to approach other viable treatments to learn how those treatments non-medical might be more effective than either medicine or surgury.

    There are many, probably most, whose present views align with June's. I love June and all of them, but I think it is destructive of one's health possibilities to think in those kinds of terms. It indicates to me that folks who express or believe what she expressed earlier do so because they are mislead by their doctors to believe that they have a specific disorder,"Meniere's," when they absolutely do not. The more confused one is about one's state of health, the less likely will one be to make solid health decisions. And this is why I say that I still have a lot of work to do.
     
  16. AllisonTaylor

    AllisonTaylor New Member

    June, my understanding is that Dr Brown's first task is "to work on diagnostic measurements in humans (which we still need so that we can confirm that you have MD and so we can monitor it's progress)''.
     
  17. June-

    June- New Member

    I do too Taximom but Henry doesn't so I will let him have his vote as well.
     
  18. June-

    June- New Member

    Yeah, I liked that.
     
  19. June-

    June- New Member

    I love you too Henry, but I would like to correct the record. What I meant to state was that in fact I do not believe there is such a thing as Meniere's DIsease. It is a catch all. Therefore a single solution/cure for all those labeled as such is highly unlikely. I think all you have to do is read this forum and see how many people absolutely have been 'cured' by completely different things to know that they have completely different origins and aggravators with regard to their hearing and balance issues. THat is why I am not a fan of the debate as to the 'one true' origin or cure. I think people labeled with Menieres have numerous disorders and they look 'the same' to doctors because when something goes wrong with the inner ear, it will express it self in a limited number of ways no matter what the cause of the trainwreck in there. I personally have experienced two completely different (in origin) inner ear problems which can easily be confused with one another. That's in the same person. How many different things are happening in the hearing/balance impaired population. I will even go you one better and say that I think the assumption that this group of problems is always exclusively inner ear is an incomplete understanding. My inner ear and middle ear problems go in lock step. After 3 years of observing that I think there is a link.

    I'll not attempt any further to convince you that we are on the same wavelength as Taximom says, but we are :eek:
     
  20. Henrysullivan

    Henrysullivan New Member

    OK, I believe you. I am honored to be in your camp.

    :)
     

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