AI Ear Disease | Arthritis Information
Here is a list of otoxic meds. What I found interesting is that these meds are possibly otoxic when used intravaneously. Mino isn't usually IV. Some APers do IV's to kick start the program, but, in your case, I wouldn't recommend it.
Also, another interesting fact was ear drops don't have this effect and you think, putting it right there, it would. So, either some threshold isn't reached or something else is going on -> which makes me think herx.
This shows a case study that had a bacterial onset of AIED, they think. They kind of dance around the subject trying to account for this.
This is my favorite - it says Mino protects hair folicles after antibiotics that cause AIED.
OK, this is only rats but they're looking at the cochlea.
More later -
Pip
Thank you Pip, there's some great information here. Once we get our printer up and going I'm going to copy all of it. I understand only the gist of the mino articles, but it tells me what I need to know, i.e., that in at least some cases, mino can protect against hearing loss.
Now that our visiting family members have left, I'm going to call my insurance group to find out if I can go to the AP doctor. Since this hearing business makes the whole thing more complicated, I want to go to someone who is very experienced with this regimine. My PCP may be willing to work with me on this, but since he's not familiar with AP, I'm not sure how much I'd trust his care in this regard.
You've been so helpful Pip and I appreciate the effort you're going to, to educate me and others on these very important health topics.
[QUOTE=Pip!]Here is a list of otoxic meds. What I found interesting is that these meds are possibly otoxic when used intravaneously. Mino isn't usually IV. Some APers do IV's to kick start the program, but, in your case, I wouldn't recommend it.
So it should be expected that high-dose IV administration would have a higher incidence of adverse reactions than the standard 1 gram/day oral.
Yep - and Jas - that brings me to another thought.
Jesse - I ran a quick search here and found some of the other posts. One thing I'd feel a heck of a lot better about is if you knew exactly what happened previously before you started AP. Remember my asking you if you had meningitis? What if something else perforated your eardrum. If meningitis can do that - something else can too. Therefore, ear drops might be a darn bad idea.
Also - some of the research I saw in relationship to AIED talked about the cochlea and how it was thought to be 'immune' from AI diseases at one time - then later they found out that the bones get damage like osteo. Osteo may or may not be because of nanobacteria but...if it looks like osteo and is partially disintergrated - well - mino could stop that from continuing if you look at nanobacterial research and tetracyclines. Again - we're talking 'bleeding edge' here as this is so far beyond what we have just on OA.
I know the last guy you saw was a jerk - but is there nobody else you could see who would look at the old records, MRI's whatever and explain in plain english what they thought happened. AIED is not the answer - there are MANY different possiblities.
Hugs,
Pip
Yea, I'm not real keen on the idea of eardrops... the eardrum is a very fragile barrier! Eardrops do nothing to get rid of middle/inner ear infection anyway.
I'm jumping in here.. not sure what Jas's issue was/is w/ her ear.. but Jesse88 and I've had some convo's about ears and AI disease.. and loss ---because we both have it... and mine seems to clear up a LITTLE when my RA drugs are working... freaking amazing.. I still have loss but it is not as bad... does that make sense???
didn't mean to hijack.. but hopefully your issue can be similar to mine.. or even Jesse's???
Babs, if you're hijacking this thread, so am I and I hope it's OK. I think this thread is for all of us who worry about how autoimmune issues have affected our hearing. We're all just bouncing around ideas and trying to find some answers.
Yes Pip, I remember your post (no meningitis) and I saw two ENT specialists at the time. Both thought it was virus induced, but they (and I) didn't know I had autoimmune issues at the time. My AI symptoms didn't start until after the hearing loss. I had had a bad upper respitory infection and pink eye in the left eye three months prior and the first ENT thought that might have been what happened to my ear. The second also thought herpes type 1 might be involved, since I have been getting cold sores occasionally since age five. I also saw a mention of the herpes virus in at least one of the articles you just posted and I found it very interesting. In short, back then they didn't really know what happened and the two ENTs I saw recently don't know any more than the other doctors did back then. I can't even get my old records from nearly 10 years back because the ENT doc has fallen off the face of the earth. My efforts to locate him and my records were futile.
It sounds like the minocin would be safe as long as I don't take it by IV. I'll be sure to check with the second ENT doc (not a jerk) and see what he has to say before I go any further with this.
Babs - you are correct, the meds would work the same. That first link shows that the same meds they use to treat AIED hearing loss are the same meds that could cause the loss. So, just like us when we make our choices for which meds to use - a suppressent would work. The question we have is if it's bacterial or viral in nature would suppression be such a good thing or just a temporary fix until the microbes overrun the suppressent?
I also found some links to studies on how cochlear implants have to be removed because they develop 'biofilm' around them that are hard to treat. The study authors said we need to develop a cochlea implant that is resistant to biolfilm - which struck me as stupid. Maybe they should treat the area completely first. Sheesh!
Jesse - I know the old records have to exist. They didn't do those tests in a vaccume. Did they do them at a hospital? Then they have the MRI's etc. Even if the doc died or moved out of state he gave your records to somebody who took over his practice. Yes, AP should be OK but what if you were 'lucky' and had that hole develop. They can fix that now! So that should be taken care of first, IMHO.
Even if you can't find the old records, couldn't you go find some ENT with access to the correct machines (or a study - shame on me!) that would have them go in and look again. That's what my mom did - the UofM was running a study and she qualified but when they went in and looked, there was nothing they could do because of how the eardrum had healed.
These are the questions I have -
Was the cochlea damaged? Has it been effected in any way? Like the disintergration in OA?
What happened to the hair follicles? Were they damaged? Did the area heal over 'flat'? If so, that area, as of now at least, has little chance of recovery with what they know now.
Did you develop a hole in the drum or whatever - if so, they can fix that with staples. That shouldn't get any worse.
My concern about AP is that we 'herx' and in areas we got hit in as these diseases came on, as weird as that sounds. It does kind of 'rewind' in that areas hit last heal first. With Palindromic, we can really feel that so it's kind of hard to miss. So, what's going to happen when your ears get hit? Are you going to keep going and hope? At least if you knew exactly what happened you'd have more info to make a decision. See what I mean?
Hugs,
Pip
PS - My hearing improvement stopped and I forgot about it until I reread my posts to you. Guess what? I also stopped the Nystatin. Hmmmmm.http://www.ifhoh.org/papers.htm
This is also interesting.
cripes.. I guess I have to add an ENT to my payroll!!
I figured out that the meds were helping because I wear aides, and previously if I forgot to put them in.. I would suffer.. and really have to strain to hear... Now, if I forget, it's not so bad.. I can hear unless they are mumbling or speaking low.. or there is some obstruction at the mouth *(hand, wall, etc.)
Good link GG. I'll keep that for my files.
Pip
That is a good link. Thanks GG.
I have the MRI that was done to rule out a tumor and I have all the hearing tests. What I don't have are the ENT notes but I have the audiologists notes that were written on the bottom of the hearing tests and I assume they agree with the ENT's notes which no doubt confirm what he told me, "suspected virus induced deafness." No tests were done on the ear itself, at any time. I didn't even know there was anything to look for at the time. Neither ENT doc recommended any further tests. I guess that's something else to ask my new ENT.
Pip, are you going to go back on the nystatin? Do you think it's just a coincidence that your hearing improvement stopped when you went off? What made you stop it in the first place? Great site, GG!!
I wonder about my loss.. could it have been chemically induced?
I had some major meds in 1992.. I almost died w/ peritonitis (?SP?) and was in intensive care for 5 days... in drug induced coma to heal.... some ugly stuff! It was in the time following that I noticed some loss... which did get a bit worse over time.
It's a mystery... I'll probably never be able to solve.
[QUOTE=babs10]Great site, GG!!
That's true Babs, which is why I'm treading very carefully with this AP approach. The antibiotics can help and hurt at the same time, just like so many other drugs. This is SO difficult!
I spoke to my current ENT doc about the status of the left ear. The cochlea is gone, dead as a doornail, but no hole in the eardrum. He said to consider the left ear gone forever. OK, as for the minocin and the right ear, he had nothing to contribute. As for the nystatin, he said that's for fungal infections (true) and couldn't see how it could be helpful for my right ear. He also tried to discourage me from the AP therapy. He's not familiar with AP therapy and is dismissing it out of hand. At least my PCP is willing to discuss it with me. The bad thing about that is, the insurance company told me they won't pay benefits for the AP doctor unless my PCP doc requests it. So, the next step is to see the PCP and talk it over. It will be interesting to hear what he has to say about this whole thing. He's young and therefore, I think he'll be more open to alternate therapies.
I have problems hearing out of my right ear. Everything sounds muffled. But I have been to the ear DR's and they say I have good hearing.
I have noticed that when I have swelling in my jaw, I have the muffling. When I am on meds that take care of my swelling, I can hear good out of my right ear.
Just thought I would throw that out there some where.
[QUOTE=JasmineRain] [QUOTE=babs10]Great site, GG!!
I wonder about my loss.. could it have been chemically induced?
I had some major meds in 1992.. I almost died w/ peritonitis (?SP?) and was in intensive care for 5 days... in drug induced coma to heal.... some ugly stuff! It was in the time following that I noticed some loss... which did get a bit worse over time.
It's a mystery... I'll probably never be able to solve.
[/QUOTE]
It could have been the high-power antibiotics you received for the peritonitis. Many of the big guns can cause hearing damage.
[/QUOTE]
I know I received three different antibiotics.. all IV... no idea what they were.. I was quite out of it for a long time... and physically weak for months after... damn.
[QUOTE=joonie]I have problems hearing out of my right ear. Everything sounds muffled. But I have been to the ear DR's and they say I have good hearing.
I have noticed that when I have swelling in my jaw, I have the muffling. When I am on meds that take care of my swelling, I can hear good out of my right ear.
Just thought I would throw that out there some where.
[/QUOTE]
that makes alot of sense, Joonie...
I have inflammation that I know is there too.. I can actually feel it behind my ear and in front it's visible to me.
Joonie - I'm so glad to hear that your hearing is influence by inflammation. That gives a lot of people hope.
I stopped the nystatin because I had hoarded my diflucan and wanted to switch to that without my liver freaking out. Love my liver. Want to keep it happy! When I'm done with that I was going to go back on the Nystatin. I'm rotating my meds to get rid of the systemic yeast I managed to give myself when I forgot the probiotics for 6 weeks when we moved. I've made some serious headway as I'm not getting yeast infections prior to mense and my body is not herxing from the diflucan any more. Good - now to have those probiotics take over more of my intestinal track! Its a war, I tell you!
Also, as far as I can tell, nobody is looking into if AIED is possibly caused by fungus. They are all just looking at the results. Nystatin is a gentle anti-fungal, I believe. If we believe in the infectious theory - who knows what all are co-infections are? I know I have at least 2 mycos and yeast. One day I'll get up the gumption and check for parasites. Eeeuuuuwww!
Babs - I know one APer who says her onset is from some sort of MRSA (can't remember) from an infected ankle. She was hospitalized and then her AI disease came on. Antibiotics are a double edged sword - they go in and kill the one form of the microbe and leave little cell wall deficient babies behind. She's using AP because - to her - she thinks the resulting buggers are what made her sick. I think a HUGE problem with antibiotics is that the docs don't dump in probiotics when they're dispensing them (and it's worse in a hospital emergency setting) and they kill off the good gut bacteria and let the bad guys out of the area.
When I look back at my onset - I'm appalled at all the little things that conspired to bring this disease on.
If I only knew then...
Pip
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