80% of sufferers go into natural remission

I think perhaps the researchers were asking the wrong question and making the wrong assumptions. ie main wrong assumption, that all mm syndrome and hydrops sufferers have the same disease origin.

 

therefore, since 2 or more diseases are thrown into the same pot their analysis will never show anything at all to be consistently effective.

 

Hey Vicki615,
I my self was on antivirals for 1 whole year in which I had not a single event of vertigo and no impact on my hearing. I have not read any concrete formal study that shows Antivirals reduce vertigo more than a placebo. There was one study from the house clinic that showed some reduction in hearing fluctuation. I was so impressed by this double blind study that I flew from Asia to the US to meet the doctor that ran it to ask her about vertigo aspects. She told me in person she did not publish results cause none of the patients in the placebo nor antiviral group had vertigo in the whole duration of the study as you can see I am deeply vested in finding solutions. After this I offered another MD doctor to fund a double blind study for Antivirals for MD, he rejected it as he said there were not enough patients to run such a study.

 

I understand where you are coming from in respect to your experience. But mine is based on my experience. I have MM for most of my life 48 years, in 2012 it became a lot worse starting in October 2012 and then for almost the entire month of January 2013 I had almost daily vertigo attacks and non stop dizziness. I started acyclovir on Jan 25th within 4 days my dizziness was much less and the vertigo had stopped and had a year vertigo free except for that 1 mild attack recently.

Because of the timing when I started the AV's, I can't believe it was a coincidence I went into remission after 48 years while having daily vertigo attacks and daily dizziness it just seems too improbable.

Have you read Dr Gaceks paper and his success with AV's? and the other studies in the database that support a viral cause, I think there is about 30 of them, I also posted in a thread a few weeks ago about a vestibular center in Florida that has the same success rate as Dr Gacek with treating their patients with AV's If you search through the forums there are posts about people having hearing test after taking antivirals and their hearing went back to normal or close to it.

I can't discount the people on these forums successes with AV's including mine and some are long term, years. Some times patients know more than doctors since we are the ones with the disease.

The doctor that rejected your offer, what did he mean by not enough patients? in his practice?

 

Sirlanc.. after the year free of vertigo on AV's what happened? are you still taking them? has vertigo attacks reoccurred while on AV's after the year?

 

[size=10pt]BINGO!![/size]

 

Hey Vicki
Based on my experience natural burnout, or AV's or mega-dosing on Vitamin C or Verapamil stopped my vertigo and it never really came back. My experience is both anecdotal and not clear to me as I tried many things and do not know what if anything worked. In parallel I studied wider data sets to understand this condition more formally. I have read all AV studies I could find, including Gaceks with which I talked directly. (I talked to all 10 leading specialists I could find globally and flew to meet some). I found only one AV study that was double blind placebo controlled by the house clinic and flew to meet the doctor who ran it, this is the study I was referring to above.

 

Sirlanc-your dedication to finding evidence-based truth (via solid studies, etc.) is epic and appreciated here!

Can you elaborate more on what you found with the 10 specialists you talked to? Or would you consider their findings to be anecdotal since it's not backed by double blind placebo? (although I'd still be interested to hear their experience with AVs!)

Overall, were you encouraged about AV use with Meniere's?

 

Amazing what you have done when you spoke with Dr Gacek, and his success with AV's it was not convincing? I am asking because sicne you have done so much about this I am interested in your reaction to what he had to say about it.

 

Happygrace and Vicky,
Based on my current understanding and considering the low cost and low risk associated with AVs I would recommend to try them for MD. That said there is insufficient data to conclude AVs ability to reduce vertigo better than a placebo. For example Gacek simply treats patients with AVs with no control group, his claims are further hard to asses as AVs simply reduce occurrence of vertigo and do not stop it like VNS

The 10 doctors I met fall into 3 broad categories of advice
1) There is no proven treatment other than injections/surgical, wait until you can no longer take it before you act, things will most likely get better themselves if you give it time, medicate for attacks as they come
2) There is no proven treatment other than injections/surgical, act now to reduce suffering do not wait
3) The are medications worth trying to manage the condition like AV's CCBs and so on, do this before considering surgical

 

Despite the convincing argument, I still feel (and I didn't use to) that those who are suffering relentlessly from this disease should look into surgery instead of spending years of their life hoping to be one of the 80%. It is no life if the quality is so poor that you can't do much beside stay at home and be miserable.

 

Sirlanc,
Have you checked out Stephen Springs protocol? I saw on the Uk mm site that it looks like Ireland man who used to post here was giving it a go.He was 8 months into not healed but better.Was wondering what your take on that is.
Nice to see you so to speak!

 

I agree, suppression and VNS will bring about 2 different outcomes, but so far suppression has been working for me and as good as the results of a VNS are I rather choose a route that does not include surgery as long as the AV's give me relief from vertigo attacks. I know it is not a perfect solution but after suffering most of my life with vertigo attacks, it is close to perfection for me. If the AV's for some reason stop working I would need to look for other treatments.

 

Meniere's surgeries, such as shunts, vestibular nerve sections, and labyrinthectomies, simply disregard or dismiss any herpes viral etiology. If there is a viral base-cause of Meniere's symptoms in most cases (as is now the overwhelming evidence, from the very high efficacy rates resulting from proper antiherpetic drug therapies), then the surgeries will bring acute relief of symptoms; but the underlying viral infection is not addressed.

The seminal question here is: How often or at what rate do post-surgical Meniere's symptoms reappear. After a labyrinthectomy, how often or at what chance does a new herpes infecton affect the inner ear on the opposite side?

And, when this happens, what is the advisability or efficacy of a second surgery? Is not one rather debilitated after having two VNSs or labryinthectomies?

A surgical solution to MM symptoms, while dismissing a viral etiology, seems to have severe long-term implications. What happens when the virus goes to the opposite ear in a decade or so, and everything starts over there? Now, what should or could the therapy be?

--John of Ohio

 

^^ That's fear mongering. Not everyone goes bilateral and a viral etiology isn't the trigger for everyone.

One could say the same about exaggerated doses of VMS. There is always the possibility of causing damage by exceedingly high doses of any vitamin, mineral or supplement in some people. Yet, you don't hesitate to advocate for it 100% but spread fear when it comes to surgery.

Too umuch bias in your posts.

 

Intrepid, are you implying that elements of my regimen(http://www.zoominternet.net/~kcshop/JOH.pdf) are "...causing damage by exceedingly high doses...?" What is the basis for this caution?

The regimen has been in the public domain and available for scrutiny and usage for about a decade now. I have presently 170 personal accounts of regimen users, describing the regimen's personal success or failure (147 successes, 23 failures, presently a 86.47% reported success rate).

There has been but one report of a side effect. One user, taking the label-recommended dose (not a "high dose") of 10 mg of vinpocetine has resultant tachycardia --- a side effect seldom, if ever, reported for vinpocetine (which is a first-line drug of treatment choice for Meniere's in Russia and much of eastern Europe).

My post, posing the question of post-surgical viral infections causing recurrances of Meniere's infections will not be considered by most readers as "fear mongering." It's a plausible question based solely on current Meniere's therapies (surgeries and antiherptics) and how each can deal with viral-caused symptoms.

But you seem to be implying (Fear mongering?) that people using my regimen are taking "exceedingly high doses" that could cause "damage." Let me allay your untoward fears that such is not the case. Over 80% of the people taking my Meniere's treatment regimen of over the counter, non-prescription agents have continuing, complete or near-complete suppression of Meniere's symptoms --- without any of the side effects or hazards you seem concerned with.

You are correct, however, in my advocacy of the regimen (100% of the time) before surgeries. Surgeries in the inner ear are expensive, pathogenically equivalent to open brain surgery, and like all such surgeries can have severe (but infrequent side effects --- read the long, technical and legal disclaimer document you must sign before the surgery).

From my perspective, I find it prudent to first undergo the least hazardous and least expensive therapies at the start --- and so do ENTs. That's why they almost universally put their new MM patients on LS/D (low salt/diuretic) therapy. For some or many, that's all that's needed. Symptomatic relief at minimal cost and greatest safety.

But I would suggest, even "advocate," that when LS/D therapy fails, the next thing to try, with great safety, with high rates of success, and minimal expense, is a two to six month trial of my regimen.

(Also advocate a commensurate prescription antiherpetic treatment, if one's physician is open to that.)

Tell, please, why this treatment sequence would not be prudent?

--John of Ohio

 

I am SAYING that VMS may not necessarily agree with all people who take it, regardless of MM. It could be your regimen or any protocol that involves extremely high dosages. OTOH, that may not be the case.

Similarly, you don't know that the virus could appear in the other ear. You don't know that a person could go bilateral, yet you caution people against surgery! But if anyone DARES to speak up about your beloved VMS or JOH regimen, you are unforgiving.

Surgery IS a very valid option so let those who are in favor of it speak their mind without your link to the JOH regimen popping up.

 

Intrepid, you take offense at people reading my regimen? Weird. Do you think them not intelligent enough to make their own decisions; and that they simply should't be made aware of the wide range of theraputic options posted on this website?

Perhaps you could then tell readers which threads they should read and which ones they shouldn't. What about everything here: http://www.menieres.org/forum/index.php/board,3.0.html ?

--John of Ohio

 

No. I take offense to maybe three thinga in life. I am not "fighting" with you nor am I being antagonistic.

I was simply pointing out that surgery is a very viable option for many people and it is perfectly okay to go that route without the whole VMS deal.

I am not calling your baby ugly. You take things way too personally. Lighten up

 

Sirlanc

You are absolutely wrong I have had Menieres sinced 2000 and had symptoms since
1998 and did not know it what it was.

There are no burn outs no remissions patients suffer with the Monster.
There may be months etc. where the symptoms seem to subside or
go away and than bang there back with the force of hurricane it never
goes away unless you go for the surgery. There are no free lunches

It is a disgusting horrific disease I know I was there at the party

Patients who are suffering for more that 12 months should look into getting a
VNS or a Laby. I did in 2002 and totally got my life back.

All these meds and diets do not work its like putting on a bandage.

I told Dr. Brackman at the House and Ear Clinic I wanted a normal life again not to worry when my next attack was coming. He said Joan *You will never spin or be dizzy again and your hearing will be less but still there. He was 100% correct

Joan NY