Autoimmune Inner Ear Disease (AIED) again

I am scared to try any kind of invasive surgery. I have enough to contend with and I'm too afraid it will cause more problems than it cures. I'm bi laterial and have been since the beginning. The OTO said I have Autoimmune Inner Ear Disease (AIED). It's not viral (he said) and it's not because there's something wrong with my vertebrae. He also said it was Atypical Meniere's. Perhaps because I don't have the vertigo that so many here have - just extreme dizziness and a lot of brain fog, hearing loss, fullness, tinnitus etc... He said AIED is the body's immune system attacking the cells of the inner ear. And to make it worse, one of the things that might help - steriods - I'm allergic to. I also have other immunity based issues so perhaps that has something to do with it. Does this make sense to anyone??

Hank helped me out on the NUCCA chiropractic aspect and I found no relief whatsoever though I thank him immeasurably for his kind help. I've tried some of JOH and it didn't help with my symptoms either although I do continue to take the vitiman B12 and C and the A-Zinc horse pill. I wonder if it's because it's autoimmune. I have yet, in my time here met anyone who has been told they have AIED. At least it wasn't revealed to me when asked a number of times. Has anyone even heard of AIED? And if so, what have you heard? I'm asking again because I understand Meniere's to be found or diagnosed in about 2% of the entire population and only a small percentage of that have been found to be bi lateral and an even smaller percentage are found to be diagnosed with AIED. I really love this site and am still looking for the 'thing (s)' that will get me through. I've only gotten worse, never better and no remissions.

I just get so tired of living life alone or having visitors come here instead of going out. I now live without being able to do what, to most people are the simplest of things - like going out with a group of friends. It's a struggle for me and although I do things outside my living invironment, it's very rare. When I do, it's a long road back to what I now consider normal. Man, am I a cry baby or what?

 

Hi Holly. That must be so frustrating.

First, disclaimers, I am just talking off the top of my head....

Most of us have heard of aied. The first dr told me it was a toss up in his head whether I was aied or early MM. I did not respond to prednisone tried twice so I think the nixed the aied dx but I have numerous little immune system issues unrelated (or not) to my ear problems.

I am not sure auto immune and viral are mutually exclusive. I believe I know patients here who have benefitted from antivirals who are dx'd aied. Check me on that but I think so. I think some of us who are not diagnosed aied (ie we don't benefit from steroids) are dx'd as having an immune reaction which caused or exacerbated our hear problems. I believe I am one. ie caused by body's immune reaction to proteins release during surgery on the other ear, exacerbated by allergies, finally virus also either causes damage on its own or elicits an immune system response which causes problems.

Anyway, in your shoes, I think I would try

1) a new dr if that is possible. Even great dr's only have one set of eyes.

2) an antiviral if you have not already and if there is no reason a dr believes it would be a risk for you (ie kidney issues etc)

3) allergy treatment - and or a specialist in auto immune diseases

4) don't give up, really

 

Hollymm:

I do not have AIED, but I do have mm. Like you I am a little apprehensive about invasive surgery because no doctor cam guarantee me relief from them.

Hollymm: I go to John Hopkins and see a doctor named Dr Della Santina. He is developing a vestibular prosthesis for patients with bilateral vestibular loss. He expects to start human trials in the next year. When I was there last year he was seeing many patients with aied and bilateral mm. I talked to one lady who was there from House ear clinic with aied so she could have access to him and he would have her medical file so when clinical trials start she could take part. He is getting regulatory approval now. All testing in animals have been excellent he has told me. The device itself is meant to restore balance full time and the device is full implntable and smaller than the size of a quarter. It looks just like a cochlear implant except smaller.
Dr Della Santina told me that the monkeys that have the devices implanted have normal balance and no ossillopsia. They actually live with the devices imlanted and every 48 hours recharge the battery. They live with normal monkeys and
the only way to tell which ones have no balance system is by identifying those with the device
If you need a phone number or email I would be happy to give you his information. Just pm me.

He old me he has been perfecting the device since 2002. He is very confident in it's ability.

 

Good input. I know Jordan's husband takes anti-viral medication and it has done wonders for him. Maybe my OTO just didn't think about it. I'm gonna google for a while and look up what you talked about June. I have other autoimmune issues too. One is a blood disorder which is HTLV II. It affects the immune system (immunity based disorder) and there is no known cure for it.

I wonder why your doctor just nixed the AIED diagonoses. My OTO did blood draws and came back with a positive on one of them. I think that's one of the things that led him to diagnose AIED - along with the other symptoms of course. It seems like he (your doctor) was pretty quick to shut that down!

John Hopkins - Whoa! That sounds like a pretty hefty place to go! I will PM you on that. What things are they trying with you? Are you planning on being a 'test' subject too? I havent been to my OTO for a while now. Basically all he does now is watch the progression. Nothing new on any supplements or prescribed medications. I hate, absolutly HATE those hearing tests. It's one of the reasons I don't go as often as I should. I want somebody to knock me out afterwords. My head is literally awash with inner noise - it actually makes me cry!!

As far as getting a new doctor, I've been to three. My PCP is reluctant to send me to another. I should just renew my referral with the OTO I had last and go see him again. I was tested extensively for allergies. I just get lost in my own world and am a lazy butt.

I think sometimes I do give up. It's the "poor me" syndrome. No pills for that one! ;D

 

What did the allergy tests say?

If you want to try the antivirals, why not say to the doctor, perhaps even your pcp, that you are now bilateral, options are limited and generally destructive in nature, that you know that antivirals have helped a number of people. Even though you know they may not help you, you want to know you left no stone unturned before you go on to more invasive approaches or give up and live with very difficult symptoms, so you want to try them and would s/he prescribe them according to the dosage that you have heard is used at House and/or has been successful for others you have communicaated with. Be prepared with that info to make his life easy.

 

I wasn't allergic to anything you would normally come into contact with. I thnik they tested about thirty to forty different types of substances. Nothing.

I'm going to have to come up with a numer of sites/information. He'll most likely refer me to the OTO because he's not a specialist. He seems to have referred me to a lot of specialists over the years. At least he believes me when I say something is wrong and admits he can't give me the special attention that I need for the symptoms I have. Not a bad doctor, just one who knows his limitations. That's rare to find don't cha think?

I'll try the anti-viral path and see what I come up with. It's the only serious thing I haven't tried yet. Except maybe tests for celiac disease or stuff like that although I have been checked from top to bottom of my digestive tract (nothing abnormal). I guess like Meniere's some things work for some of the people, the same things don't do anything for others. I'm always glad and curious when someone finds something specific that has helped them. I know both Hank and John's methods have helped a lot of people. I just don't happen to be one of them =~(

 

Just another suggestion, but check out the AIED_Nystatin link in my .sig

 

(sympathetic =~( )

I know I've talked about this with a gazillion people, so please forgive me if you've already been through this with me, but have you tried a gluten-free, casein-free diet? Just for a couple of weeks to see if it helps?

And the more I read, the more I believe that yeast overgrowth is either a factor or somehow related with these food intolerances...so maybe cutting out sugar/carbs as well?

Which, as my father says, leaves absolutely nothing that tastes good. Which isn't entirely true, really (it's AMAZING how much your taste buds change when they aren't being constantly assaulted by salt and sugar--you really do stop craving the stuff), and besides, it's worth it to feel better...

 

I'm not understanding how the jump is maid from gluten-free, casein fee diet that helps with Meneire's. All I can find are the benefits. And how it helps with both autism and certain psychosis. Where is the link made that I can jump to? I need to go to my doctor with something. Maybe I can go on line and just find those foods with gluten and those foods with casein and eliminate them as much as I can from my body. But don't those same items have positive actions associated with them? Blogging about a gluten free/casein free diet does not get you the actual foods to stop.

I'm guessing that I need to get a lot smarter about the subject and how to go about finding out 1) if I need it and 2) how I know its working for me? Are you on a life long diet of a GFCF Taximom?

Also, I read the information in you sig, link papajoe and it was very interesting. Looks like most of the outcomes were subjective but as long as it works, how objective does it need to be right? I don't really know what to take to my doctor that will convince him to start me on a nystatin regieme. It's it a forever thing like my bipolar medicine?

I guess what I'm trying to say to both of you is where do I find the information that actually shows me the diet(s) or provides me with enough positive information to give me a chance at them. How did you get your doctor to precscribe Nystatin to you papajoe? It's use is for so many things. Did the doctor give you a test first to see if you had some type of yeast infection in your intestines? How about you Taximom, how did you get to where you're at with your diet? I mean, what led you to believe there was gluten and casein in overabundance in your system?

I'm not nasaying here, I'm really interested. I want to know more from the horses mouth, so to speak, and get some concrete evidence to take in to get my doctors on board with these things mentioned in the last two posts.

What replaces the good properties in a GFCF diet?
Nystatin looks like there's really no side effects to speak of. Is it a drug that is only prescribed by doctors or can I get it in a supplement store?

Geez, I feel totally stupid between the two of you. These are things I've never looked into although you both have mentioned them in your postings.. I think it's time I did. I just want to know how and so here I am. picking your brains. It seems like these things you two talk about are both supplemental and diet changes only. Just one more time, for the idiot here =~)

 

For a treatment to be effective to all cases of a disease, all cases of the disease have to be caused by the same thing, and we all know that not all MM cases are caused by the same thing.

Nystatin can help those with fungal problems, but probably won't do much if your MM or MAV is caused by other things. Unfortunately, there are no standard tests for systemic yeast infections. There are tests, but your insurance may not cover them, and your doctor may not know what to make of the results.

I was able to talk my doctor into prescribing Nystatin because he believed that fungal infections could cause my symptoms.

He believed, because he suffered from a systemic fungal infection himself in the past. He didn't have MM symptoms, but bad brain fog, exhaustion and migraine. Unfortunately, if you do have one, there are few "classic" symptoms and they are often misdiagnosed as other things.

Some people have been helped by systemic anti-fungals, but I suggest to start with Nystatin because it is a safe drug. If it helps, then you have reason to try the stronger drugs.

You can send your doctor the AEID_Nystatin paper. I'm also working on a "anti-fungal document" similar to my "anti-viral document". Here is a rough draft if you'd like to show it to your doctor. It contains a list of PUBMED articles that link fungal infections with inner ear diseases.

Nystatin isn't a forever drug, but I'll be taking it for a minimum of one year. I'll also be taking systemic anti-fungals periodically at the same time, two weeks on, four weeks off. If I'm where I want to be next september, then I'll stop them. Nystatin and the systemic anti-fungals must be prescribed by a doctor.

Gluten-free is a good diet for this, but if gluten-free helps, it doesn't necessarily mean you are gluten intolerant. If you have a systemic fungal infection, wheat is likely to be a big trigger. I first discovered this when SoCalCyclist suggested I cut wheat out of my diet. Now, after 14-months of treatment, I can now eat wheat again with no ill effects.

Check out a Candida diet - it'll be gluten-free and low carb, and generally be a healthier diet that most people eat.

Preliminary doc: http://www.papadisc.com/MM_Nystatin.pdf

 

I don't eat gluten, but dairy doesn't bother me.

Somewhere, way back when I was debating this with Studio, I posted a whole bunch of links--studies linking gluten with bipolar disorder, migraines, depression, and other neurological disorders.

From what I've read on gluten forums, people with bipolar disorder who go gluten-free do not necessarily become suddenly able to go off their meds. Or even eventually. But they do report that they are able to significantly reduce their medications, and that there is such a huge improvement in their symptoms, they are not tempted to go back on gluten. (Yes, I know this is anecdotal. Just reporting what I've read.)

As for what foods to avoid, try www.celiac.com and www.csaceliacs.org for comprehensive information. Basically, you would need to avoid anything made with wheat, rye, barley, and for many people, oats. Wheat is the most ubiquitous ingredient, as anything with flour is wheat (unless it is specifically listed as corn flour or rice flour or sorghum flour, etc).

Now, if you have celiac disease or autoimmune gluten intolerance, you will not be able to go back on gluten the way papajoe can. People used to think you could, because once the damage from gluten heals, some people can eat gluten for a matter of weeks or even months before they have symptoms again.

Many celiacs also have trouble with dairy products. This is because the intestinal villi, damaged by gluten, are unable to make lactase (the enzyme that digests lactose, the sugar in milk), and exposure to lactose keeps the gluten-induced damage from healing.

But once the villi heal, many can then eat dairy products with no trouble. Others have a separate casein allergy or sensitivity, and stay off dairy.

I'm not sure exactly how yeast overgrowth factors into this, but again, going to the celiac forums, there are a HUGE number of celiacs who have trouble with systemic candida infections. So I'm convinced they are at the least, often linked.

I hope this at least partially answers some of your questions.

 

I absolutely believe in Celiac and gluten intolerance. But I think many cases are due to undetected fungal infections so while not everyone can go back to eating wheat, many can if the infections is treated in the right way. The problem is, if someone reacts to wheat, they automatically get labeled as gluten-intolerant. Since many doctors don't believe in systemic fungal infections, they don't even consider it as a possibility.

 

Right--I didn't mean to sound like I was disagreeing with you.

I think when the gluten intolerance is an autoimmune reaction, with gluten-induced endomysial antibodies, then, even if it was originally triggered somehow by a fungal infection, the body will continue to make those antibodies when gluten is consumed, even after the infection is cleared, and even in the absence of symptoms, and in those cases, gluten avoidance should be permanent.

But if there is no gluten-induced autoantibody reaction going on, then there is no need to avoid gluten.

It's easy enough to determine--it's just a blood test (the standard celiac panel).

Nuts, isn't it? I mean, doctors don't believe in celiac, they don't believe in gluten intolerance, they don't believe in systemic fungal infections, they don't believe in vaccine reactions...

It's not rocket science--the studies and evidence are already there! Sometimes I feel like we're trying to convince them that the world is not flat...

 

I didn't think you were disagreeing with me, I just wanted to make sure you knew I wasn't disagreeing with you

There is a lot of circumstantial evidence that autoimmune may be related to fungal infections (at least, some autoimmune)

 

Holly I have been on Nystatin for a month now. In the New Year I am going to motivate myself to follow the Candida Diet. I should probably try the gluten-free at some point to see if it helps. I have been eating way too much sugar over the holidays and feel crappy for it.

I don't know if the Nystatin and diet will help but one thing I am convinced about is that it won't hurt and it was a very experienced NeurOTOlogist that prescribed the Nystatin for me. He says it has helped some of his dizzy patients. It leads me to believe that this is an emerging possibility for these symptoms in some pateients.

I agree with Papajoe and Taximom that all of this may be linked somehow. I want to point out that I have a huge list of symptoms with no hearing loss so nobody is looking at Meniere's for me at this point.

I am scheduled for a bunch of tests at a dizzy clinic March 23 so until that time I am going to keep taking the Nystatin and work on the diet to see if I get any relief that I can report to the doctor. If I have no relief hopefully the tests will point the doctor in the right direction.

I haven't had any autoimmune testing so far and I still have Taximom's info about Celiac floating in my head.

It is a long road of investigation and so many things to work the way through. Lucky for us we have a forum full of really helpful people to give us a new idea to try.

 

Taximom... I thought the blood screening for Celiac Disease wasn't enough. Wasn't there another test that you had suggested for testing for Celiac?

 

The "gold standard" of celiac diagnosis is still said to be an intestinal biopsy, even though that was the means of diagnosis 50 years ago, before the more sophisticated blood tests of today were available.

The biopsy is kind of like diagnosing stage III cancer--by that time, it's pretty late in the game and a lot of damage has been done. And it's hit or miss--they're not violating a tumor, but taking a few tiny samples (from 20 FEET of intestine), and damage is patchy and often not visible except under a microscope.

The bloodwork has almost no false positives--but could have false negatives, if you are IgA-deficient.

There are also genetic tests--but only about 80% of those with biopsy-diagnosed celiac actually have the supposed "celiac genes" (DQ 2 or 8). So they are obviously not failsafe either.

Then there's the whole subject of gluten intolerance--some people have every symptom of celiac and more, yet somehow test negative for celiac--yet their symptoms disappear on a gf diet. Nobody seems sure where to classify them. Perhaps early-stage celiac? For this group, dietary response is not only the best but the only diagnostic tool.

That probably made it more confusing rather than clarified things, didn't it?

 

I do believe that Nystatin without the diet won't be very effective. Also add probiotics to your diet. Let me know if you need help with the diet.

 

Taximom - thanks, no it wasn't confusing. Good news actually. I thought I would wait until my next colonoscopy to get a biopsy done so it is good news that a simple blood test will do the job.

Papajoe - I am taking the probiotics and I am going to look up a candida diet so if you want to provide a link to one, post away.

Question for both of you - since you are both well versed in the digestive tract here is my situation. ( I was thinking about this last night and the connection) I have a hiatal hernia, acid reflux (prevacid), stomach polyps (biopsied-not cancerous) and my last colonoscopy showed the beginning of diverticulitis. I have a family history of hernia, diverticulitis and colon cancer. With all this stuff the answer for my symptoms may be wrapped up in all of this with either problem. (yeast or celiac or gluten intolerance)

I would be interested in your thoughts on how all this may go together.

Holly - thank you for letting me use your thread to ask these questions. I hope you are getting something out of the info. too.

I am happy to be travelling down this road of investigation in combination with the inner ear investigations and brain investigations that are coming up in March.

Hopefully 2011 will be the year to get some answers for me.

 

I have a hiatal hernia, too, and was on MAJOR amounts of Nexium and/or Prilosec for over 10 years.

But 90% of the severe reflux/GERD I was having was from gluten. Which sounds totally nuts, as I can't think of anything blander than things like bread and pasta. But it's a very common symptom of celiac/gluten intolerance.

When I read on the celiac forums how many people were able to stop taking their acid blockers, I was thrilled, and immediately stopped taking mine.

I had the WORST acid reflux I'd ever had in my life. Acid literally came up and out my nose (sorry for TMI).

So I thought, oh, well, I guess I really NEED these acid blockers, and I kept taking them.

Well, those acid blockers blocked the acid needed to process the B12 in my multivitamin and/or diet, and caused B12 deficiency.

And that's what caused my Meniere's symptoms.

Symptoms of B12 deficiency:
tinnitus
hearing loss
dizziness
tingling of the extremities (I had that, too)

Sound familiar?

I would suggest you ask your doctor to test you ASAP for celiac AND for B12 deficiency. And I would further suggest that BEFORE you get the results, you ask for a copy (doctors' offices are now making you jump through all kinds of hoops for this--you may have to fill out a separate release form for each one, and get the doctor to sign it, even though it's his/her office--totally INSANE now!).

The reason for the copy is that many doctors read the results incorrectly (some even order the wrong tests for celiac, they'll order a wheat allergy test instead, which won't tell you if you have celiac or gluten intolerance), and also, as John of Ohio has said many times, the lower limits on these tests are ridiculously low, and basically only tell you that you are not yet dead--they don't tell you that you have dangerously unhealthy serum levels of whatever vitamin they're testing for.