Science Based v. Results Based Treatments for Chronic Idiopathic Symptoms

Re: Science Based v. Results Based Treatments

If they can pick you up - great - but if they can't (as in my case) you stand up and bend over (like trying to touch you toes) you hold the glass to the opposite side of you mouth (this means the bottom lip) and drink! It's never failed me, for realzies!

- NOW back to the serious issue here...

 

Re: Science Based v. Results Based Treatments

you are trying to drown us

 

Re: Science Based v. Results Based Treatments

I said DRINK it - not to SNORT it!! Silly boy ;D

 

Re: Science Based v. Results Based Treatments

Hi guys,

Wow, there's so much written in here and on the last thread it's hard to know where to begin. Hank, you've covered a lot of ground. I'm trying to think how best to tackle this rather than just countering a large number of your assertions and personal observations etc. I want to roll the clock back for a second if I may before we even discuss anecdotal evidence further and take a look at something else first – your diagnosis - and this is important.

I read through all of what you had recounted happened to you and, correct me if I'm wrong, but it appears you were symptomatic for about 6 months with all the myriad of symptoms one experiences with an inner ear or balance problem coming and going. In that time you had a hearing test which showed low frequency hearing loss in one ear (which I also have). You saw one doctor in this stressful time who said you probably had Meniere's and then offered you some unpalatable options.

Meniere's, MAV, VN, BPPV, and labs for example all create similar symptoms that overlap with some slight variations. Meniere's causes incremental hearing loss over time, either unilateral or bilateral, as attacks occur and the disease progresses. MAV does not cause permanent hearing loss (to my knowledge) but can cause sudden hearing loss which returns later. I've had this happen to me which lasted for 12 hours. Both produce tinnitus -- in fact all of the dizzy illnesses I listed can produce tinnitus. BPPV clears up on its own (usually) as does labs and VN, however they may require vestibular rehab and BPPV may require a Modified Epley. MAV can be chronic or intermittent or it could happen as a one off.

Now let's look at Meniere's

1) While it is associated with low frequency hearing loss, there are a number of other explanations for this type of hearing loss:

• "Hereditary and/or genetic origin is a common cause of a low frequency hearing loss. For example, Konigsmark et al reported that a progressive low frequency hearing loss may be dominantly inherited. Lesperance & Burmeister reported that Wolfram Syndrome 1 (an autosomal recessive disorder) is a result of mutation in the WSF1 gene. Some patients who have Mondini dysplasia may be born with no functional Organ of Corti in the apex of the cochlea.
  
  A low frequency hearing loss may also be related to disease processes that affect the integrity of the hair cells in the apex of the cochlea. Sudden hearing loss, viral infection, renal failure, and Meniere’s disease have been associated with a low frequency hearing loss. Changes in the endolymphatic pressure, as in cases with fistula, intracranial hypertension, and even spinal and general anesthesia have also been reported with varying degrees of transient and permanent low frequency hearing loss. The diverse etiologies, permanence (transient vs permanent vs progressive), and severity (moderate to profound) would suggest that one should understand the etiology of a particular patient’s hearing loss in order to customise management."

2) Meniere's disease while progressive can move into a spontaneous remission.

• "Some patients experience periods of temporary remission (absence of some or all symptoms) for no ostensible reason (spontaneous). Some temporary spontaneous remissions continue for many years. Other temporary spontaneous remissions may last only months, weeks, or days.

So, Hank, given how often MD is misdiagnosed, have you ever considered that you do not or never had Meniere's disease but that your symptoms were caused by something else? Or could you be in a spontaneous remission? There is currently no cure for this disease just like there's no cure for migraine:

• "There is no known cause of Meniere's Disease, there is no known cure for Meniere's Disease, and there is no cure on the horizon. That's not "negative thinking"; that's simply the fact of the matter and there is no point in denying it or offering false or gratuitous hope. The good news is that Meniere's Disease is not fatal, that there are many possible "symptomatic" treatments (treatments for the symptoms) with which patients can try to lessen or at least manage their symptoms, and that some patients experience temporary spontaneous remissions of varying periods of time. However, some patients are unresponsive to virtually all treatments, including invasive surgery, and will become disabled."

This is a very important question because your assertions about chiropractic and NUCCA all stem from your current wellness and now symptom-free life (which is fantastic) post NUCCA when it could simply be a coincidence. Even if you had never had these adjustments you might have seen this resolve on its own if the cause was something else. I have no idea what the case is but given the absence of evidence for chiropractic care having any effect beyond lower back pain (Cochrane Systematic Review) and this:

Chiropractic: a critical evaluation. J Pain Symptom Manage. 2008 Sep;36(3):e4; author reply e6-7

• The core concepts of chiropractic, subluxation and spinal manipulation, are not based on sound science. Back and neck pain are the domains of chiropractic but many chiropractors treat conditions other than musculoskeletal problems. With the possible exception of back pain, chiropractic spinal manipulation has not been shown to be effective for any medical condition. Manipulation is associated with frequent mild adverse effects and with serious complications of unknown incidence. Its cost-effectiveness has not been demonstrated beyond reasonable doubt. The concepts of chiropractic are not based on solid science and its therapeutic value has not been demonstrated beyond reasonable doubt.

The next logical step to take is to wonder if it was MD at all. It is possible isn't it? That possibility exists. But if you never considered that, got better not long after NUCCA, you then assumed correlation implied causation. I know it seems compelling but this is precisely WHY we need CONTROLLED trials to tease this out. The whole question of whether or not you have MD would be a major confounder and a blessing for you if you actually don't have it.

Another reason I would question the MD dx is because of the people here who have tried NUCCA or some form of chiro with no effect. And so this is why, until someone sets up a controlled study with a large sample of people with certifiable MD, and uses NUCCA on them all, we cannot rely on anecdotal reports on a forum no matter how many there are.

Lastly, I think Taximom said that she didn't have to pay much at all to see a chiro or the NUCCA practioner. If you're willing to take the gamble with a neck adjustment (I have) and that practioner isn't charging extortionate rates then I see no problem with having a go just as I would have a go at acupuncture in hopes of a placebo effect.

 

Re: Science Based v. Results Based Treatments

Hank,

>>> But the fact is that medical doctors are excellent to deal with medical problems. But it is a mistake to assume that all adverse symptoms of the body have medical causes.

What did you mean by this? Can you expand? How do you define a "medical cause"?

>>>Do you have a clothesline out the back? LOL

I definitley do!

S

 

Re: Science Based v. Results Based Treatments

Good morning, or evening, Scott,

The folks here at Menieres.org who have medical diagnoses of 'Meniere's Disease,' have a myriad of symptoms, some in common, or synch, some not. But what I find interesting is that my symptoms are the precise variety that Prosper Meniere studied 100 years ago. And because Meniere's Disease, as medical science defines it, is purely defined by symptoms, ie, cyclical aural fullness, accompanied by increasing tinnitus, hearing loss and vertigo, and not cause, then anyone who has those symptoms, in a de facto sense, also has Meniere's Disease, or Syndrome, depending on the literature.

My case was the pure case of Meniere's unlike many people here, believe it or not. Yet for the lack of something else to call it, many times doctors will lump a whole host of folks, with various symptoms, under a Meniere's diagnosis.

What I find extremely interesting about all this is that there seem to be two strains, if you call it that, of sufferers whose symptoms are very similar to mine, but whose symptoms respond to different things. Each set of sufferers report the same cyclical symptoms. Both UC chiropractic and JOH regimen have a substantial success rate, anecdotally speaking (your term), treating these symptoms.

Whereas the theory behind UC chiropractic is just what I have given many times here, that being that certain misalignments affect the workings of the brain stem in such a fashion that the nerve pathways, in this case those of the 8th nerve, are impinged or otherwise affected to corrupt or impede the flow of information along the 8th nerve to and from the brain and inner ear, the JOH regimen, as I understand it, is designed to counter the effects of the herpes virus. But each of these treatments have been shown here to successfully treat the same, classic Meniere's symptoms. That should tell us something.

What I believe it may be telling us is that the herpes virus likely has the same effective result on the 8th nerve as does nerve impingements on that nerve or on the brain stem nerve pathways for that nerve. I believe that notion has a scientific basis.

Infecting the facial nerve, the herpes virus can cause paralysis in the muscles of the face. Those muscles, for the lack of nerve innervation, atrophy until such time as the virus loses its hold on the nerve.

The same sort of atrophy can result from forces working on that nerve on the brain stem. Recall my discussion of Winde's surgery. After tampering with her entire brain stem area on the left side, one of the symptoms Winde suffered as a result was facial paralysis (facial nerve) loss of feeling (trigeminal), difficulty swallowing (glossopharangeal). The facial muscles atrophied, giving her face a sunken in look on that side.

Now does this PROVE anything? No, but it explains how two certain populations of folks with practically the same symptoms might be successfully treated by two completely different treatments depending upon the cause of their symptoms. It also explains how other variants of what doctors might call 'Meniere's' symptoms, might have even other causes which do not respond to either UC chiropractic or JOH.
Is the muddy water getting any more clear?

But there are other major factors at work here too. Let's just talk about the two variants that if treated early enough might respond to UC chiropractic or JOH. IF the appropriate treatment, being one of these, is not used early enough, because the tissues of the inner ear require contact with the brain to even carry out the basic functions of cell replacement, the tissues that atrophy as a result of the lack of nerve innervation might over time become irreparable. Now we have a third class of Meniere's sufferers, each of whose symptoms were either caused by one of the two causes about which I speak here, but because the very nature of the inner ear tissues changes so much over time, what may have begun as classic Meniere's symptoms morphs into a hodge podge of various other symptoms, say migrain even. So this also explains a lot. This explains how so many varieties of these symptoms can persist, be related to similar causes, some of which respond to certain treatments, some of which do not, thus fooling medical science researchers to throw up their hands and label them as idiopathic.

Am I right in all this? Who knows. But I have been right in enough cases of folks who have these symptoms, and others by the way, that a definite pattern is discernable. And the same can be said for the population of folks who respond to JOH, perhaps even other treatments, acyclovir being one that has given another distinct population of Meniere's sufferers relief from their symptoms.

Now let me touch on one of the real frustrations of dealing with medical science on these things. As you began to discuss in your question to me, because medical research is so behind the curve from understanding even what we on this website presently understand, as soon as someone like me actually determines what was causing his symptoms, then that fact alone disqualifies the Meniere's diagnosis. That is where your question, a legitimate one, was going. That disqualification arises because along with the symptoms above, the classic ones in my case, the other qualifier for the diagnosis is that these symptoms have no known cause or cure. They are idiopathic. All that means is that as soon as any particular cause or cure for these very same symptoms is demonstrated, as UC chiropractic has, then the folks who moments before the treatments who had Meniere's, all of a sudden never did. Now reasonably, how can that be? Medical science just says that the person was misdiagnosed. But that makes no sense either because there is no default diagnosis even available to catagorize what they even had, and which was successfully treated. That is because these same researchers do not recognize that UC chiropractic is a successful treatment for ANYTHING. So the effect of all this is that the entire body of data that could have been used to further the cause of curing Meniere's symptoms gets discarded as corrupt or inexplicable data. That is unreasonable. But because there is no judge and jury in any of this, and because each research house that might choose to study any of this in the first place, generally, has a profit-seeking source of funding, then all of the data that does not potentially support future profits gets discarded. And this is why Meniere's symptoms stay untreatable. And this is also why this website flourishes with content. Folks come here and stay here because they have largely been ignored or misdiagnosed, or left abandoned by the state of medical science as of today and they find more relief of their symptoms from reading what worked for someone else, thus the large adherence to results-based treatments rather than science based ones.

Good question.

Thanks,

Hank

 

Re: Science Based v. Results Based Treatments

This conjecture is interesting and inspires thought in many directions as well as toward NUCCA. I think this is very helpful. I think it is most helpful when it is not used to bolster a particular conclusion but is more fruitful always to let thoughts go where they will without being herded to a particular conclusion.

Reality is what it is and cannot be proved into submission. Our mission is to follow all the leads til we find the answer(s). That's how it seems to me anyway.

 

Re: Science Based v. Results Based Treatments

Hank, what about those of us who respond to both the JOH regime AND chiropractic care AND who have vitamin deficiencies?

That is another of my gripes--that many of us have more than one cause to our symptoms, but everybody is looking for ONE and ONLY one cause.

I totally agree with you about how ridiculous it is that, as soon as you pinpoint a cause for MM symptoms, someone says, 'well, then it couldn't be Meniere's because Meniere's has no cause."

That's like saying that we don't know the cause (or causes of cancer), and therefore, if you find that cigarettes caused your cancer, it wasn't really cancer because nobody knows what causes cancer.

Totally Bass-ackwards!

 

Re: Science Based v. Results Based Treatments

My dr uses the word 'multifactorial' in my case. I wanted it to be one thing so my little brain could hone in on just one thing but I must admit that all evidence in my case points to the fact that she is correct.

 

Re: Science Based v. Results Based Treatments

Forgive me on this June, I do not mean for this to be a chiropractic/JoH vs medical science discussion at all. No, this is simply about approaches to discover the truth about Meniere's and whether the results-based approach' as I describe it above, should be automatically discounted by medical science simply because med science has not performed sufficient diligence to explain the positive impact of these types of treatments on the population.

 

Re: Science Based v. Results Based Treatments

Then, we have no difference of opinion. I don't agree with discounting anything. I don't think very many people here do.

 

Re: Science Based v. Results Based Treatments

Not to be political but I"m assuming some prisoners at "Gitmo" do not have hiccups

 

Re: Science Based v. Results Based Treatments

Some good news on this front egross and members:

http://www.ncbi.nlm.nih.gov/pubmed/11698801

 

Re: Science Based v. Results Based Treatments

Oh, I agree with you. Just not trying to be specific about any particular results based treatment. I only refer toUB chiro and JOH as examples. I know chiro very well. So of course that is what I talk about. But you are right and your post is very much to my point in this thread.

 

Re: Science Based v. Results Based Treatments

Well, let's use this as an example. Let's say I am correct and that my particular Meniere's symptoms were due to a chiropractic condition, treated appropriately by a chiropractic treatment, as opposed to a medical condition treated appropriately by medicine or surgery. That is what I mean here.

America in the 1950's that is what we all thought of Australia when we were there. Clotheslines out the back. We all loved it.

 

Re: Science Based v. Results Based Treatments

I am not sure who you are arguing with Henry.

 

Re: Science Based v. Results Based Treatments

There is no argument. Australia is a wonderful place, especially Sydney.

 

Re: Science Based v. Results Based Treatments

I am lost. I think if the point is that some dr's have tunnel vision, you will have a hard time getting an argument here. If the point is that all dr's have tunnel vision then I would say my experience does not support that.

 

Re: Science Based v. Results Based Treatments

Let me follow up on this one again with a couple of other cases to illustrate.

You see this guy?



That's Peyton Manning, a famous American professional football player, American football meaning real football of course. Anyway, take a look at the tilt of his neck and he head, and how his body doesn't line up. You think it's just the photo? We'll here's another showing the same thing



And another



He's selling soap or something in that last one. So give me the assumption that what I'm telling you is true. About a month or two back, word came out of the Indianapolis Colts management that Peyton had to have neck surgery to repair a nerve impingement in his neck.

Now here's a shot of our friend Charisse



Now this shot shows the same sort of condition existed in her upper cervical and frame prior to her undergoing NUCCA. She will tell you, when she got done with the first adjustment, her shoulders were level and her neck was straight, all for adjusting that one, first vertebra back into position. Notwithstanding the relief from he MAV symptoms she felt immediately afterward, it is obvious from her experience that she did not have a medical condition causing her skeletal problems. They were resolved within a minute by a chiropractor administering the correct adjustment.

Now what about Peyton Manning? Was his problem, the one causing the nerve impingement, a medical condition requiring a medical/surgical solution, or was it merely a chiropractic condition requiring a chiropractic solution. The assumption by his doctors, by virtue of their training, was that it was a medical condition requiring a surgical solution. Well, needless to say, all the cases I have seen, including mine, my wife's, folks like Charisse, NJspingirl, Songbird and on and on, lead me to believe that in the very least, Peyton would have been wise to visit the closest NUCCA office, about 80 miles north of Indianapolis, Indiana, where he plays. I expect that if he did, his condition could have been resolved in about an hour, and WITHOUT surgery.

Now look at this guy



That's Tyler Hansbrough, first round draft choice, all-American basketball player who plays, or used to play, for the Indianapolis Pacers of the National Basketball Association. This past year, in his rookie season, he played less than 1/4 of the games the Pacers played this year. Why? He's dizzy. He has vertigo. He has migraine symptoms. Well, look at his neck. Now look at the illustration in the right frame showing how his neck vertebra must be in order to conform to the outline of his neck in the left frame. Obviously, he has the same condition as Peyton Manning, as Charisse, as I did, as Winde did, as Njspingirl did, as Songbird and all these other folks who have come here with Meniere's symptoms and discovered that this chiropractic condition, not a medical condition, was responsible for them.

I have personally spoken with Tyler's trainer. I have written his father, written the president of Basketball operations, Larry Bird, even spoken to a close relative of Tylers. I am told by his trainer that Tyler is under the best medical care available. Well, Scott, how is that going to help Tyler if the medical professionals over his care are not trained to deal with this condition? How is that going to help Tyler if in fact, as it certainly seems from these photos, if infact he suffers from a chiropractic condition, suited for the training of a professional upper cervical chiropractor rather than medicine, or certainly not surgery?

I use these cases to further answer your question above. Needless to say, everyone near the cases of these very high profile atheletes, even the atheletes themeselves, assume that the medical professionals that are leading them through the decision process are the best qualified to do so. But is that the case? I expect you know what my opinion is. So I don't even have to answer that question. But at least the question ought to be asked, and that is the point here.

Your question, inviting this answer, leads me to expect that you are predisposed to believe, just like all these folks, just like Charisse was for all those years, that they are being tended to by the best professionals suited to deal with their conditions. That is generally the assumption, that we should go to see the medical doctor. But in my case, had I stayed under his care, I would have done so to my own peril. And I expect that is the case in a large percentage of folks who suffer with these symptoms.

So this is what I meant when I wrote that "it is a mistake to assume that all adverse symptoms of the body have medical causes."

Incidentally, I have heard no more reports on Tyler's condition for a couple of months.

Again, an excellent question, one that may help us to continue drilling down to a place of common ground. This is good, a very fruitful discussion. And I thank you for taking part.

Hank

 

Re: Science Based v. Results Based Treatments

I did not see a reference remark of mine that you were referring to. So went with my last remark at the time, which had to do with Australia. And no, not all doctors have any particular viewpoint, tunnel view or not. Everyone is different and so we agree.