John of Ohio

Henry,

Dr Tim Salimien (sp) at alpha spine is not fully Nucca certified, he is only Level 2, not fully and nationally certified-- that is why I did not go to him after my initial consultation a few years ago.

Dr Russell Friedman at Alternative Health Solutions is one of ony 20 nationally fully certified Nucca doctors in the world Henry. This according to their website as well as information given to me by Nucca.

So Henry, that is why I did not see your doctor at alpha spine after my consultation a few years ago- he was going to be doing things to me he was not fully certified to do. That is why I chose Friedman a few years back.

So there it is Henry, I guess itnis like do you want a 2nd year medical student doing you heart transplant or a fully trained and certified heart surgeon.

Henry I am glad you have gotten relief, but you got it from a not full trained an licensed/certified nucca dr.

Regards

be good my friend.

 

Harsh thread... I don't think you can expect success rates that high.

As Henry said to me when I joined the board a couple of weeks ago, MM is idiopathic. If we searched hard enough I think we can find people with all kind of successes in using different treatments, even bending over, tilting your head and drinking warm water from the opposite side of a glass. I'm sure it's worked for someone.

From what I've read from JOH and Henry, they both suggest they you are your own best medical advocate and their recommendations aren't for everyone. We each must decide what works best for each of us. The search could take years.

 

Diagnosed:

good post,

Joh is claiming 85-90 % symptom free suscess rate. Always look go from least to most invasive. Everybody agrees, one must also consider the spontaneous remissions as the natural course of the disase is not consistent.

I fully recommend trying Joh and Nucca, I did for many months and when hey did not work, I proceeded down the treatment flow chart and got my relief from injections.

My point is start with least agressive treatments and work your way through them until something works.

Diagnosed,

I hope you ind relief--- this disease sucks, don't be afraid of to follow the treatment flow chart.
The key is too take back your life from this crap.

Be good my friend

 

Yes... I don't think anyone disagrees that you want to try the least invasive stuff first. There is a long list of things to rule out and it is not always easy to get your doctor to go along with all the things you need tested.

Check out this thread from the database: http://www.menieres.org/forum/index.php/topic,25945.0.html It will give you a good overview of things that could be causing your Meniere's symptoms. Another thing for us all to consider is MAV (migraine associated vertigo)

 

Because they either don't feel the need to belong to a forum or they are busy out living their lives or they don't have a computer or they are confined to bed or they think we are all a bunch of nuts and don't want to have anything to do with us. It takes a certain personality to hang around here. "We" are not representative of the MM population as a whole. In fact, many, many people here don't even have MM. They have MAV or cervical spinal problems or BPPV or...

Here's my understanding of what MM is: an idiopathic (all other potential causes have been ruled out and no cause can be identified) cluster of four symptoms: pressure or fullness in the ear(s), tinnitus, fluctuating and typically low-tone hearing loss, and vertigo lasting >20 minutes that is not positional. A lot of people show up here having been told they have MM but find out after coming here they were misdiagnosed. They take the advice of those who post about their success with NUCCA, dietary allergies, vitamin deficiencies, etc. and find they, too, have one of those problems or that they have MAV (sometimes MM, too). But for those of us who have ruled out all of those possibilities, we are left with the same 4 symptoms. This is true MM. There is so far no cure for all 4 symptoms, only treatments that sometimes work at letting us get on with life as best as possible.

Had I responded to dietary changes and diuretics, I would not be here. In fact, I did not even start hanging around consistently until I had failed diuretics, diet, NUCCA, JOH, and dex. Around that time I became more involved as I struggled to decide which destructive procedure I should have in order to be able to leave my house alone again. Currently, I still strongly believe my case is viral and I am planning to pursue antiviral treatment again to see if it will help with my other symptoms. I don't think I or most people on this site are typical MM sufferers.

I would bet the vast majority of forum members are here for a short time, read, commiserate, perhaps find something that works for them that their doctor never told them about, and then leave.

Nothing about this site is scientific or proves anything, That doesn't make it useless, in fact far from it, but anyone coming here and trying to draw conclusions about what they are reading should understand the difference between what is scientifically proven and what is simply anecdotal reports.

 

I should clarify what I/doctors mean by idopathic: no cause that can as of yet be identified by medical science.

 

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That bolded part is total bunk. Chiros have been claiming to cure MM long before Hank Sullivan decided to post on MM.org. You didn't "discover" the connection a couple of years ago. So it is absolutely entirely possible that someone went to a NUCCA chiro before they even heard of MM.org. Just like they claim to cure MS, autism, lupus, cancer, migraines, etc., and have been making those claims for years before the internet even existed.

 

I care ;D... and so do many others here. Just because you are not the loudest doesn't mean your message has been lost here.

 

Scary, scary place guys. I'd like to say that as a newbie on this forum though not with MM, I was received warmly yesterday when I had a scare at work. Ya'll were informative,sympathetic and caring in your replies to me and I am appreciative. If I had read this thread, I would never have had the nerve to post anything, being afraid of being ridiculed..some of you should take note of how often you are having to explain that someone really isn't a jerk, he just sounds like one on here.
I think I know now who the warnings are being directed at on the tone of the forum. I was puzzled but am no longer.
I originally followed this thread to get some views of some who had tried JOH, before trying it myself..it sounded like a reasoned and logical approach to relieve some symptoms, if nothing else. Could someone who is less extreme in their views of this that has tried and had success give me some feedback? I am now worried that the regimen might include side effects such as pompous, narrow-minded attitude and large,LARGE, chip on shoulder. I also don't want to have a cult-like mentality about it. I have enough going on up there without adding more. This place is supposed to support, not tear down if I understand the objectives.

 

goofygirl... I think JOH is worth a try as a lot of folks have found a benefit from it. Not all take the entire regimen, some take what is referred to as JOH lite. I don't know if there is a pdf for that but if you post the question someone can tell you what parts of the regimen they have found helpful. One person in particular that comes to mind is Wino.

JOH works on the premise that it is a virus (most likely Herpes) that is activated and causing the problems. If the cause of your symptoms is not due to a virus you may not get any benefit from it. (deficiencies, MAV etc.) The part of the regimen that is most responsible for deactivating the virus is the lysine.

My explaination is in layman's terms but is what I understand of the program with no bias or chip or need to be right.

The most important thing I could say is make sure you run the regimen past your doctors for their approval so as to not have any interactions with any other meds you take.

Good luck with whatever you decide to do and I hope you stick around. ;D

 

Goofygirl

I have had success with the JOH. I sarted with the llysine then added the other components gradually, I think it was the vinpocetine next followed by the bioflavannoids and so on. That took a couple of months and I felt so much better. I then gradually ditched the majority of the components believing that it was the llysine that was doing most good.

That was nearly two years ago. I still continue to take the llysine, together with vit c & d. I also take one serc per day, a diuretic and I am very careful that I avoid my known triggers. I am very well and havent had vertigo since Aug 2009.

Nothing to lose with JOH. I suggest you add components gradually to discover what works and what doesn't.

Best of Luck

Frank

 

Thanks, Caroline and Frank,
It sounded interesting to me because I have had a lesion-like rash appear on my neck,face,back and scalp that comes and goes with mental or physical stress. :-[
This unsightly stuff can appear on me after the flu,sore throat, or very stressful situations that last several days. It appears without the other MM symptoms,but have NEVER had a major MM attack that didn't result in it appearing within hours or days at the most. A very old GP who was a very good diagnostician felt it was an unusual presentation of shingles,and the anti-viral meds and/or steroids he prescribed usually helped but it was only regular short-term therapy.
A biopsy yrs later showed no bacterial or viral presence, just came back as auto-immune dermatitis. This appeared about 3 yrs before the onset of my MM symptoms and dx. Somewhere in the back of my mind I have always felt there was a connection and it had to be something lurking, ready to break out when my body's immune system was compromised..just like the herpes viruses. I think I will try it as I can easily order the ingredients where I work. (one of the perks of working in a pharmacy) I see no harm in it and hopefully I will be one of the success stories! Thanks again for your input! ;D

 

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Hi Goofygirl,
My husband was going to try JOH's regimen in full, but we had trouble finding most of the components here in Jordan (where we live). He was able to find L-Lysine and started taking that. Over the course of a month, he started to feel some improvement, so this led us to feel that his case must be viral. When we reached this conclusion, we thought that it would then make more sense for him to take Acyclovir (an antiviral medication). The Acyclovir had almost immediate results, and he has been doing well since. The only thing is that Acyclovir is fairly expensive for us, so my husband now takes both Acyclovir (in the morning) and L-Lysine (at night) with the intention of eventually switching over to just L-Lysine as a maintenance. My personal feeling about JOH's regimen is that the most essential component is the L-Lysine. Perhaps the other components help, too, but for my husband, Acyclovir was sufficient and the L-Lysine also works (but seems to work more slowly than Acyclovir).

My husband used to have a "pimple" in his outer ear that would swell during Meniere's attacks. Since taking antivirals, it has crusted over and disappeared. I mentioned it to Dr. Gacek (who is a proponent of antivirals for Meniere's) and he said it fit the description of a stray herpes lesion. He would also get strange pimples on his forehead that have now cleared up since taking the medication. Another member here (Chipmunk) also had something she thought were insect bites on her forehead (I think?) but it turned out to be shingles. She, too, improved through antiviral medication.

In any case, I am grateful to JOH for the work he has done, and especially for bringing the viral theory to light. At the same time, people should not feel that they must dive into and commit to the whole regimen in order to achieve results. If you are taking all the components at once, you will not know which ones you can safely eliminate later on when you are (hopefully) feeling better. My advice is thus to take things slowly and really analyze why you are taking each component and if it is really needed. Like I said, my husband was ready to take everything from the regimen, but it turns out he did not need to. And if you read JOH's PDF in full, he is forthright in explaining that he considers the first three components to be the most essential.

 

The newest, revised, and most successful version of my regimen can now be downleoded here:

http://www.zoominternet.net/~kcshop/JOH.pdf

This PDF replaces all previous John of Ohio Meniere's Regimen write-ups. Previous versions are no longer recommended.

--John of Ohio

 

I certainly apologize if I didn't see your post on your spontaneous remission. I don't think you should take that as lack of caring on my part, though.

Since I was told by 3 doctors that my symptoms, "like those of ALL MM sufferers, had no known cause, and I found that all 3 doctors were totally wrong, the idea of spontaneous remission doesn't ring true for me, either. Things happen for a reason--even when doctors don't bother to look for the reason.

Was your remission spontaneous, or the result of medication?

That opens the door to an entirely different conversation. If mess bring about a cessation of symptoms, is there any reason to look for the original cause of the symptoms?

I believe there is, and that any doctor who doesn't is negligent.

Obviously, many here will disagree with me on that.

 

Faded Rose,

I saw your post. It IS important. That's what I'm talking about. If we had more feedback from people feeling well, we could perhaps make sense of the numbers.

Cheers,

Chris

 

Hi Chris,

While I am not feeling well now, I was in remission for several years before the current episode. If you are looking for only JOH users to comment on their remission, I can't help you because I haven't started it yet, but I can tell you my experience with "wellness." Elsewhere I've written that I was in remission since 2004, but it was actually 2007. Prior to this episode, I ate, drank and experienced life in all its sleepless, skipped meals, stressful fullness, with no problems. It hits without warning and without apparent cause. In the past, prednisone would usually drive it into remission, but not this time. Nothing is working. I have no idea what my triggers are, or what, if anything, will help this time. Yesterday, I got so depressed I sat down and ate two whole Kit Kat bars, washed it down with chocolate milk and had chocolate covered almonds a little bit later. Today, I'm a little bit better, not worse, so I guess we can take chocolate off the list of possible triggers?

As I am HSV antibody positive, I'm now interested in looking at antivirals, such as acyclovir, or the JOH regimen to help. If I had heard of that theory before coming to this board, I had forgotten it. I plan on talking to my doctor on Tuesday. If I get well again, I hope I know exactly what helped!

 

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