Autoimmune Inner Ear Disease (AIED) again

Yep, that's why I stick to PUBMED and other scientific journal-type articles, otherwise most doctors won't even give them a second look.

 

And yet ... they put forth with pride and interest their anecdotes of their own special off label successes. Or better yet, happily consign problems they can't solve to the psychosomatic heap.

 

Have you had the HLA test yourself? The cervical issues would also tie in with HenrySullivan's cervical focus.

 

Hi Vet,

Hopefully someone decided to run some blood work to see what else, if anything, is going on. An ANA test run by a reliable lab is worth every penny.
Mine was sent from So. Fla to LA but that's the lab my Rheumy uses for this particular test.

I am sure you know once you have one AI disease your chance for developing another go up considerably. There are many. They can overlap creating almost a new disease since you might display symptoms of one while the other is dormant. These are very tricky things find, deal with, live with.

It helps to know your particular pattern. I have the speckled pattern so there are certain autoimmune diseases that follow that pattern and unfortunately, I am following it.
I too, am RA negative

AK is a disease that seems to affect young men predominately. My son has a classmate with it. Do you take some form of treatment for it? How has it impacted your life? Did you have any relatives with AI disease?

Unfortunately, most people don't have the opportunity to find out through blood work because they don't exhibit those type symptoms associated with AI to merit the blood draw or see the right type of doctor who can see the clues.

My NeuroT did his fellowship at House and even with my medical history did not even consider blood work regarding my ears/AED. My Rheumy however did. I was negative for that test but that test is not sensitive enough...yet.
So while I am negative, that doesn't in her eyes, mean I don't have AIED, in fact, she feels I do because of my excellent response to steroids and my past history with AI disease. So does my Intergrative Medical doctor.
Immune system problems can be complex and frustrating. Do you see a Rheumy for your condition?

 

If you have IBS issues, check out the earlier posts in this thread regarding diet & anti-fungal meds. My other symptoms were very much like Chronic Fatigue, another non-diagnosis.

You are only a hypochondriac in the minds of closed-minded people.

 

I'm so happy this topic got started. Not only is the information fantastic but the questions and comments of so many people have me feeling hopeful once more. Oh, I know there may be setbacks and there's a rather large chance it won't work with both the anti-fungals and the anti-virus meds. But at least I'm trying again.

I wish I could offer the information or ask the right questions but I'm just not nearly as informed as so many here. I did e-mail my doctor and gave hime this website knowing he would probably not be interested enough to wade through the topics to get the information he might be interested in. I at least hoped he will see how dedicated I am to doing something about this disease. I know many of you call it a syndrome and that's not wrong, but as I look at it people call cancer a disease and they don't really know the causes, they know probabilities. Does a disease have to end in death? Nope, in fact, diseases are accocisted with autoimmune 'syndromes'. But here I go, off topic. Just wanted my two cents in about why I continue to call it a disease.

I hope more people read this as it is serious discussion about serious issues. No arguments and bullshit. Just help and information.

I look forward to hearing what my doctor has to say about it all. I'll probably be referred to the OTO. Good. Just one question, if you feel like answering. How long have you guys been studying this thing? You seem to know so darn much!! I am at a loss sometimes to even understand the words. I'm looking stuff up left and right - but that's a good thing, it shows hope.

 

It is a good thread Holly... maybe Ray will consider it for the Database.

 

It'd be good to see it stay. Really excellent input from some really excellent people who are willing to say it over and over again for anyone who asks, just asks...

 

bump for gert

 

Hey Caroline - how's it hanging?

I talked to my doctor about anti-fungals and anti-virals. He is forwarding the information to my OTO and we'll see what the OTO wants to do with it. My doctor doesn't want to just do it without consulting the specialist who diagnosed me - pretty smart guy, huh? Anyway, hope to hear something by the end of next week for sure. We updated my med file while on the phone...he didn't even have AIED on his 'list' for input into the computer, but he worded it in, kinda...

 

Thanks for bumping this back to the top guys.

Y'all know me as mr anti-fungal for MM. But note the title of the paper I list in my .sig (http://www.papadisc.com/AIED_Nystatin.html) - note that Dr Nelson was using Nystatin to treat not MM, but AIED with Nystatin.

So if you have any issues with Auto-immune diseases I think it might be worthwhile to investigate the fungal angle. (fungal angle - that sounds funny )

 

I for one am very grateful for this information, PapaJoe. I've been studying it for the past several weeks, and will get one of my docs to give it a shot. I gave a copy of it to my personal doc today to review, and he'll go for it. He's been very helpful with all my specialists and makes sure I get the prescriptions I need if I get off track seeing docs out of town.

 

Hey Papajoe! I was wondering, what might some of the other side effects be except for the the yeast basically coming out of your body in strange places (your 'rash' pictures comes to mind). My kidney function blood tests are a little high and I'm thinking it's the Methorextate I'm taking (chemo treatment - low dose). I couldn't possible have problems so soon after taking an over the counter probotic right? (I'm feeling extra stupid today). It's the only change I've made in meds over the last year!


Oh Yea,
I've read the side effects and they are so mild (although I am experiencing them) that I'm thinking I'm way out in left field somewhere. I'm guess I'm just hoping...

 

No harm in asking, especially with high liver numbers. But, not probiotics shouldn't have any effect on liver numbers, nor should Nystatin.

The systemic anti-fungals might, but since you're not taking them, they couldn't be ;D

Are your liver numbers usually in the normal range? If so, and if the Methorexate is known to affect them then that's probably the reason. Do you know if the metho* is known to have that side effect?

The liver, as I'm sure you know, is used to remove toxins from the body and it also metabolizes drugs, it it's good that you're monitoring it.

Papa Joe

 

I'm looking too hard. I've just been feeling sick and hurting more than usual the last week or so. I hate thinking my immune problems are looking for another way to attack me... :-\

Anyway, on with the good stuff...

Earshurt used to cut and paste a lot of stuff from the internet, did you think he was on to something during your discussions with him?

 

It's hard to tell. I'm more inclined to believe him than not believe him, because the American government does have a long history of testing stuff on unsuspecting citizens, but even if I buy it, there isn't anything I could do about it.

 

Severe vertigo is a common symptom of Meniere's from all that I've read. I (thankfully) don't suffer from it in it's true form. Yeah, the dizzies, the room moving, nausea but nothing like so many have it here. This continues to point me in the immunity based system direction. Why my doctor never gave me anti virals in beyond me. The prednisone I understand, I'm allergic to it as I am a number of meds.

I wonder how many people on this site have the same symptoms with regard to the vertigo? It seems to be a very important factor in Meniere's symptoms. Other autoimmune issues should be a flag too.

Papajoe, in case you still here, I'm still taking the probiotics and watching my diet. Stopped the L-lysine because I didn't want too much going on at the same time. And since it's usually quite a while before any results come about, I don't want to mistake the wrong supplement doing the right thing.

My screen looks really weird today! It keeps jumping to the left and then to the right. Is it me or my computer?? THAT is the question!

 

Holly, I doubt it's your computer. Probably some eye involvement and in my experience, it's a sign of migraine.
Computers and TV's have rapid movement. There are special computer glasses to help your eyes handle that imperceptible movement. I know you are mostly housebound and your computer is your life line but if your eyes are acting this way it's best to give them rest.

Also, smart to not do too many things at one time. You might not know what did or didn't work.
Add one supplement/med/therapy at a time and keep your journal to remember what did and didn't work.

My friend had her first migraine this past week. The only thing that helped was Valium.

I hope you feel better soon.

 

Thanks amberini. I think it is my eyes playing with me. I'm going to get off soon before I get a migraine. Right now it's the computer or watching my grandson play video games (I promised him he could play a lot today). I guess I could go outside and play with the dogs...hmmm just might work!

 

I vote for playing with the dogs in the fresh air. It was beautiful here today. I had my dogs out while I worked in the yard. They loved it and I got a good bit done including repotting a Jasmine tree.

Win-Win!