Autoimmune Inner Ear Disease (AIED) again

Whoa! You got a lot done I went out and played with the dogs and did a perimeter check of the fence to make sure they still could not get out. Then, I took a nap ;D

 

I think my herx is finally easing, a whole month after I stopped taking anything that should have caused a herx - and the dogs & I played in the yard while I finished tilling our garden yesterday! Then I took a nap. Great minds think alike. We finished the day at a friend's for a house concert.

Holly, your symptoms sound just like what I've experienced. Keep hanging in there with the diet & probiotics, but keep in mind that "auto-immune" is just like "menieres" - it's what they say when you have certain symptoms, but they don't know why.

 

i hope you both start feeling better soon.

there is a "WHY". It's called Genetics and Environment. One is the ammo in the gun, the other is the trigger to fire.

 

Thanks aberini, you're so right about your words, they make a lot of sense. I just hope one day I can find the right ammo.

I so sorry you have to go through so much Papajoe to get to a better place. Will you have to do this the rest of your life? How much time do you get between the 'bad' days and the 'good'?

Sounds like the good days are pretty damn good from all the stuff you did just yesterday! I'm glad that can happen for you. I haven't gotten any relief from the probiotics and diet yet in regards to the MM issue but then, I don't expect any for a lot of months so I'm not being unrealistic here. I have lost a bit of weight from eating healthier. Don't get me wrong, I'm not a health nut by any means and I do cheat but they're small changes and the right ones for both the candida and a healthier life style regarding eating habits.

I'm hoping they come up with an absoute blood test - Kd68 is not infallible though I know it is a common method the specialists use for testing for this particular autoimmune disease.

 

In case this link hasn't been posted before, here is info. regarding KD68.

This article talks about 1999, I hope they have refined this test. I seem to recall my Rheumy telling me it still was not sensitive enough. I had it and was negative.

http://www.dizziness-and-balance.com/disorders/autoimmune/otoblot.html

 

I've had it three times and negative all occasions.

 

Thanks amberini for bringing the article. I've tried to read up on Kd68 as much as possible. Most times it says it's not an absolute proven test but what gets me is they keep using it to determine typical Meniere's and/or AIED. Maybe it's the process of elimination they go through with the entire diagnosis. It's a tool to help them determine what the underlaying cause may be. It's only consideration is to try to diagnosis as close as they can just what's going on. I don't have the hydrops. I don't have the true vertigo. My symptoms don't change, they are slowly getting worse which lead me to believe it's not typical Meniere's but something close to it.

They did diagnosis me with not just AIED but bilateral Meniere's and bilateral sensorial hearing loss as well. Seems they couldn't really make up their mind so slapped me with everything!

As a process of illimination it may very well be a good tool. To depend on it solely is a mistake a doctor would make without other symptoms being in place, in my opinion. I do hope that, one day, they'll be able to use this or other blood tests as a way to either eliminate or prove positive, what is going on with us.

Three times greg! Why would they do the test three times? They wanted a comparision so did it three times just to make sure? Did they do it on different occasions or the same day with three different blood draws? How odd!

 

Well the weird part is that I was able to pick and choose my good and bad days by whether or not I was taking systemic anti-fungals. Taking them would cause Herx reactions that would last a couple of weeks after I stopped the drugs.

But I recently took some enzymes designed to break down biofilms. Biofilms are a protective membrane many microorganisms form around their colonies - it's now thought to be a big reason for drug resistance. The bugs live happily in their biofilm colonies and the drugs can't get to them. Biofilms are a big area of interest to researchers these days.

The problem is that it's been six weeks after I stopped taking the enzymes, and two months since I stopped taking the azoles, and I'm still getting Herx reactions. I was feeling good yesterday morning, but got Herx'd again yesterday afternoon. So I'm concerned that the enzymes have started a chain reaction of killing off yeast that'll end who knows when. When it does end, I expect I'll feel like a million bucks!

Amberini, have I shot myself in the foot with the enzymes?

I used to think I'd be done in a year or two with the treatments, but after reading Amberini's comments, this may be a long-term thing. But it's still better than the "beast" I was dealing with in 2009-2010.

The reason I mention that AI and MM both are a "we don't know" diagnosis is that I was generally healthy as a horse for 50-some years until the MM hit. But as "atypical" MM, from what I learned here, it was really more like MAV than "classic" MM. And while I had several episodes of true vertigo, my symptoms were more like general imbalance and dizziness.

Then, through serendipity and the good folks here, I found my path. Even with the Herx, life is much better and I do have hope for a herx-free future

So, I believe it's possible to get a MAV & MM diagnosis based on the effects of a systemic infection. I expect that genetics are involved and environment too, but I can't believe that I'm the only person who ever experienced this. I'm special, but I ain't _that_ special. ;D

 

Holly, I've been to a bunch of docs and each of them wants to run tests.

I have no issue with tests such as this, because I say run all the tests you want if you're trying to help me. These three tests were run years apart, in 1999 (first onset), 2003 (second attack) and 2007 (third attack). Also, in 2007-2008 I was seeing many different new docs (oto's, rheumys) and each wanted their own battery of tests run by the labs they use. Compared to what I've spent on hearing aids and meds, the co-pay for the tests was insignificant.


I've also had three brain scans looking for an acoustic neuroma or any other sort of brain lesion/tumor. 1999. 2003 and 2007. I got possession of those films and have had other docs look at them too, because one of my ears "presents" in the audiogram as if I had a AN. Wouldn't be surprised if I didn't have another scan sometime this year just 'cuz this disease so unexplainable.

Also, not specifically referring to THIS test, but over time and years tests (I suppose) could get better and more discriminating.

Although I love my job, like the rest of working class America, I also work for insurance to protect my family. As such, I say use it.

 

Holly, the other deal is, like Amberini and Papajoe have pointed out, as have others, docs have told me that AIED and MM are on a continuam. Even someone like you and I, with some similar symptoms and presentations, are vastly different as patients. What works for you might not for me and vice versa.

I strongly support finding a great oto AND a rheumy who will work together WITH YOU, and your GP. As I made the tour of rheumys, I finally found a couple that were as interested in my disease as I was. They do bloodwork and other stuff and talk to the oto.

Also, at the time of my last bad attack in 2007, my white cell count was sky high. Ended up in the care of a hemotologist/oncologist for 6 months, as the levels gradually went down and down. I didnt get tested with a bone marrow test ("The gold standard" acc'd to my hemo) because the levels consistently declined and there were no other warning signs in my labs or physicals but that was the next step.

All docs agreed after that incident that it was another diagnostic nail in the coffin of AIED.

On previous hearing loss attacks no one tested my white count, so it's unknown if that was an anomaly or something that comes along with the process. Hopefully, there won't be a next time and I won't get to check, but if there is, I have a list of labs for my GP to order Stat.

 

PapaJoe, you haven't shot yourself in the foot.

I am in a particularly vexing Herx right now. My own doing, I admit and I am happy in a weird way that I am having this herx because it means what I am doing is working.

From what I have read, we each go through this at our own pace. Some herx briefly and then feel better, some like us linger in this self induced feeling of illness.

I suspect though for long standing infections, there is more "stuff" to kill and so the load will be huge and last quite a while. I am still taking stuff to kill critters and now for 10 days, I have had this flu like feeling even with my regimen of Milk Thistle/Liver support plus all the other stuff I take.
You know, we have to really flush/push water to keep eliminating all the crud. I find myself so thirsty, almost getting a sick feeling if I don't have water handy.

I may back off on my dose of OLE to see if my symptoms subside a bit.

Detoxing is not for the faint of heart. It's grueling but you will come through the other side and feel better.
You are right about biofilms being so absolutely stubborn.

I felt so like refried poop today. I didn't want to do a thing but plowed through some quiet type work.
This afternoon I took the dogs out for Kong time. I haven't been able to exercise the past 10 days except for the 4 daily walks but do try to get time outside several times a day.
While we are Herxing, we can only take care of ourselves because our body has it's own time table to heal.

I guess that's why it's called a "healing crisis". Meanwhile, I am looking for the next corner to turn and hope it's for the best.

Better days are coming!

 

I think that I've having problem really understanding the Herx reaction. If you continue to use anti fungals and eat the right foods to get rid of the toxins/candida in your body, don't the toxins, at some point, leave for good? I'm kinda thinking like this is some type of antibiotic that is released into your system to get rid of the problem - like taking antibiotics for urinary tract infection. The infection goes away at some point and the medication is no longer needed. What keeps making the candida come back if your doing probiotics/antifungals and eating the foods that help get rid of the overgrowth of candida in your body? Is your body producing the gluten on it's own? So you're always going to have to keep up with the anti fungals to keep it in check?

About the doctors and tests. I kinda feel like you do Greg. Do whatever tests you need to find out what's wrong and how to, potentially, fix it or at least reduce the symptoms. My biggest problem is getting everyone together to talk about it. I just recently got my doctor to update my health condition file from the information I got from the doctors he referred! It's an HMO I go to and it's big on prevention not so much the cure. Although they do take care of what they can in house. Even if I pushed it, the HMO doctors are more apt to leave it to the individual specialist...I actually have no excuse other than I'm so sick of the tests over and over and everyone looking for their own speciality instead of my overall condition.

That's why I'm trying things right here on this site. I guess I'm just tired of going to all the different specialists and have them find an autoimmune problem, provide me with medications for that disorder and then kinda push me aside for the next patient in line. Not that they don't care about my condition, they're just not into the overall health conditions - you know putting it all together and saying "hmmm just whats going on here?" When I do ask about my other issues, I'm usually met with "that's not my speciality, you need to see a such-and-such". I haven't found that 'group' of doctors that work like yours seem to do. That's been my experience forever it seems. I have to get pushy and stomp my feet every once in a little to get the attention. Then, of course, I feel like some kind of hypochondriac and the eyes start to roll. I'm kinda stuck with the HMO doctor I picked out in the beginning as the other doctor's rosters are full. I'm also stuck right now with the HMO I'm going to (health insurance $$ issues). At least he will send me to specialists real easily now as I've had numerous health issues that he has no speciality/knowledge in.

 

It's a really long, complicated issue and that's why it can take so long to resolve.

Remember the biggest part of the immune system is in the gut. Leaky Gut Syndrome takes a long time to heal, almost a year with being off gluten and other foods that are particular for you.
I found out what foods were problematic for me, grains, corn and soy are the biggies.
It's important to know what foods are bad for you. One of my doctors took a test to find out what foods she had an issue with. Spinach! So, even the really good stuff can be bad for a person.

Melons can be bad for people with yeast. There are molds on the outer rind of the melon, when you cut it, the inside is contaminated. There could be system wide contamination within the plant itself.

Bottom line, you can re-contaminate yourself without too much problem. It's enough to make one crazy!

Then addressing the pathogen, in your case, yeast. It can hide in many places. It can be protected by biofilms. I knew one woman who had Candida and had taken Diflucan already for 2 years when I met her and she expected to be on it many more years.
I don't know why these things are so stubborn to get rid of but they are.
Your body isn't producing gluten on it's own but you might have cross contamination without anything you did. It comes from manufacturing process.

They also cause your body to be in a state of inflammation which also means your immune system is being aggravated. It's not meant to be on "high" all the time, only when there is a threat.
Yeast could be interpreted as a threat.

 

Thanks - I had blood drawn yesterday for another liver panel/protime. All my doctors freaked two weeks ago when my liver numbers and protime were out of whack (due to the enzymes & herx). Hopefully the numbers will be better today.


Misery loves company:

 

I think that's true, and what I believed two months ago was that I'd be done by the end of this year. But I now think I was over simplifying things a bit.

Based on the acne-like vasculitis I get as part of my herx, there are likely billions of fungi in every single nook and cranny of my body right now.

When I started the anti-biofilm enzymes, every mucous membrane in my body got inflamed. My sinuses and my lungs are inflamed, and (TMI) it even started to burn when I pee. A number of my joints get intermittently painful, and the vasculitis continues to spread. It became obvious to me that there isn't a single part of my body that isn't infested with the fungus.

So, I think it's theoretically possible to kill it all, but I think it's likely to take years. Not because the fungus keeps coming back, but because it's so deeply embedded that it will take years to make it all go away.

The same think happens for Lyme or any wide spread sub-clinical infection, bacterial or fungal. I'm not sure if viral qualified for herx-causing reactions or not.

But, even though the Herx reactions are a PITA, I'm still much better off than 2009 when anything I ate made me sicker, I couldn't work, and could barely get out of bed, was dizzy all the time with tinnitus screaming in my ear. At least now I can work, do chores, do things I like to do, eat what I want, and rest a lot.

The worrying thing now (and thanks for the reassurance Amberini) is that I used to be able to turn off the Herx by stopping treatment, but this Herx is dragging on and on (though I guess its slowly easing). Attacking the biofilms is what brought this on, but it's also necessary for long term success.

What I don't know is whether, or at what point, I can stop the treatments without having to worry about the worst symptoms coming back.

Sorry, you're likely in for the long haul, but take comfort in knowing that you'll benefit in the long run. The first Herx is the worst, and it gets better as time goes by.

{{{{{{Holly}}}}}}

 

The good part is that I was able to heal my leaky gut in about a year. The nystatin, restricted candida diet, and megadoses of probiotics (especially kefir) were what did it for me. I can now eat whatever I want, but in the interest of self-preservation, I'm still sticking to a lower-carb, healthier diet.

 

Papajoe, can't wait for your blood work results if you care to share.

Holly, I have had herx's on and off for many years. Some have been quite violent with coughing.
I too spent many years just lingering, not having enough energy to do more than I absolutely had to do and even then some days nothing got accomplished. Taking a shower might have been all that I could do without several hours recuperating and getting ready for the next "must do" chore.

But those days are in the past.

Something you mentioned though is concerning. Vasculitis. I am guessing you can't get into to see your doctor now. I hope you have a camera to take pictures of the sores and take them to your next visit. Vasculitis often accompanies autoimmune diseases. As I have said somewhere before, our skin is the biggest organ we have. AI often affect our skin first, the first clues showing up there but an untrained eye or an eye not use to looking for these clues might miss and not pursue.
So pictures can be helpful.
If it were me, I would get some professional opinions on this, just to cover my fanny.
I am guessing since you are in a HMO, you have to be referred to see a specialist, like a Rheumy, is that right?

 

But don't you think it's possible that your autoimmune issues are caused by the same things that make you herx?

Many of my "atypical" MM symptoms were MAV to the core, and migraine isn't curable, just controllable right? But I never had any of the MAV symptoms prior to 2007 and don't have them now. I don't doubt that environment and genetics play a role, but I suspect (my opinion only) that some AI issues have a simpler cause that what people think.

Let's say KD68 is detected. What does that mean? What causes it? The presence just means that your body is attacking itself, but it doesn't say why.

Just more stuff to ponder...

 

PJ, you are wise to restrict. Many people reinfect themselves and have to start the whole process over.

Who wants that rollercoaster?

 

Let's say KD68 is detected. What does that mean? What causes it? The presence just means that your body is attacking itself, but it doesn't say why.

Peeling the onion. Trying to figure out what the final trigger was. It could have been one of the top triggers, viruses, bacterias or other pathogens that turned on the switch which started the cascade.
You may have been "fine" until you started stirring the pot with anti fungal treatment which then started aggravating your immune system. Crud started dying and overloaded your system which then started the herx.

Depending on which switch turns on and what Genes you were born with, certain disease pathways are activated.
I know, clear as mud.