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ETD & Chronic Otitis Media w/Effusion

Posted: Mon Apr 15, 2019 5:49 am
by Hexrain
As the title suggests, I was diagnosed with Eustacion Tube Dysfunction due to a Deviated Septum injury I sustained as a kid playing football. I was diagnosed after I went to an ENT for Chronic Otitis Media w/Effusion. The doctor put me on antibiotics on 2 separate occasions (but consecutively). Note that he had not yet discovered my deviated septum. So I took the antibiotics for the full round, both times, and afterwards, within a week, all the OTITIS AND EFFUSION RETURNED. He then looked up my nose, diagnosed me with ETD , said I needed health insurance and to stop smoking. He told me nothing about treatment and pretty much shooed me out of his office. I had to do my own research on my chronic condition and determined I would probably need surgery to correct my ETD. $10,000 - $20,000 out of pocket. I never got health insurance, as I could not afford it.

Fast forward 6 years (about a year ago from present). I began to noticed stomach discomforts, acute pains in what I thought was my gallblader, or possibly liver. loss of appetite (ate one meal in 2 days), vomitting, nausea, fever. They became progressively worse and worse to where i was afraid that my gallbladder was failing (another +$10,000-$20,000+ procedure). I bit the bullet and went to a gastroenterologist (this was now about 4 days ago from present time of writing this.) Told him all my symtoms with my stomach, and TRIED to segway (as a hail mary, lets get every little thing I can checked, even though he's a gastro doc) into asking about my ETD and Otitis. He didn't shut me down when I asked if they might be related, but he also didnt respond. He neither confirmed nor denied. Just kind of looked at me. Well then he suggests that its gastritis thats causing my stomach discomfort and prescribes Pantaprozole. I was kinda pissed of at him. I was like "I can feel my gallbladder hurting! How could it just be GERD?!!!!!" I went home pretty disappointed that I had gotten a script for a $500 reflux drug (thankfully the pharmacy tech at the walmart i went to somehow applied a ridiculous discount to it and i got a generic for $17!!!!!! Out of pocket with no insurance!)

So i go home, take my first pill, and then the miracle starts to happen. that evening probably 4-5 hours after taking my first dose, i noticed i wasnt having any stomach pain, but there was something else. first i thought i was having side effects of the medication. my sinuses felt like they had balloons being blown up in them. i had popping in my ears. i had sinus draining. again, no acute pains in my stomach and no nausea. fell asleep.

When i awoke in the morning, i kid you not, amost all my EAR AND STOMACH DISCOMFORT WAS GONE. the scales on the outside of my ears, from flaking infected skin was almost gone. no acute pain in my ears. no feelings of boils in my ears (a common occurance i endured for these 6 years prior with NO RELIEF) No more leaking effusion. No more itchiness (or at least much less) THIS WAS AFTER ONLY 1 DOSE!. of course i gladly took the next pill that morning, and proceeded to comb the internet for information.

when i had first got the perscription the day prior, i was worried about the side effects so i glanced at some info. I had taken note (not really purposefully) that Pantaprozole has a semi-offlabel use to kill some bacteria i never heard of. Some pylori thing....

The first thing i did when i got on the internet was confirm what bacteria Pantaprozole is effective against. Thus started this crazy rabbit hole to explore of the terrible world of H. Pylori. to my shock, studies linking otitis media and H. Pylori are readily available, and suggest a relationship. what i read was that the reflux can colonize the middle ear with H. Pylori, an infection that would not be treated from antibiotic regiments alone.

I also discovered that my girlfriends symptoms of "allergies" and ear infection, were probably due to our infection with H. pylori, as well as symptoms of our 2 kids. one developed a sensitivity to corn and an aversion to eating meat. the other a sensitivity to milk. the first has also displayed developmental issues, which got me thinking about the "brain fog" i have been dealing with for 6 years that seems to be completely gone (3 days on pantaprozole alone). it also made me look at H. pylori and autism and ADHD. something that seems suspiciously related but not well understood.

I had my girlfriend take one of my pills, and several of her ailments seem to be responding quickly and dramatically as well. Im going to talk to my doctor tommorow about an Elimination Therapy for me, and our family, and then we will go from there. I feel like I have been given a miracle cure! I cannot express how happy i am.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Mon Apr 15, 2019 10:02 am
by Helico_expert
This is quite an interesting story. I have to admit it is the first time I heard about gastric symptoms related to Otitis.

Nevertheless, glad that it work out for you. Here is a bit of extra information for you.

Pantoprazole is pretty safe. you can take long term for years. However, it does not kill of H. pylori. Pantoprazole only reduce acid secretion. Therefore it is not a cure. Pantoprazole is only a treatment.

H. pylori only colonise the stomach and usually only cause trouble in the stomach. to cure the stomach problem because of H. pylori, the only way is to take antibiotics.

Partner's and children symptoms may or may not be because of H. pylori, dont go into conclusion too quickly.

The best way to diagnose H. pylori is by breath or stool test.

Children dont normally have symptoms.. and because of the bad side effects from antibiotics, we dont normally prescribe treatment to children until they reach 15 or above.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 4:23 am
by Hexrain
I am going to see the doctor again tomorrow. My doctor's assistant told me Pantaprozole will kill it and also Omeprazole. as i understood it, since studies have been shown that in the presence of H. pylori that other bacterium like Staph and Strep are also present. so it seemed to me it was more of a "just in case of secondary infection". I have been reading about H. pylori and many studies show 100% irradication with Pantaprozole/Omeprazole plus yogurt/garlic/bismuth and several other things besides antibiotics (more natural) are actually able to kill it completely. I AM STILL GOING TO GET ANTIBIOTICS, mainly because i know i have secondary infections. just my 2 cents from what i have read. I have been reading a multitude of studies (30+) about so many things related to this. but i am certainly no doctor.

The kids symptoms seem too coincidental to not be h. pylori in my estimate. sudden aversion to meat, sudden food sensitivity, 1-2 "stomach bugs" a month for each of them, strange gas and bowel movements. of course im not going to medicate them without some direction from the doctors, it just seems like all our symptoms can be traced.

My girlfriends "alergies", mouth pain, back pain, and other symptoms have cleared up in less than 72 hours after sharing my medication.

Another thing i think that i should mention, is that i suspect that i may have (and spread) and especially hardy and infectious strain. there are different sub-strains of H. pylori right? i mean some are resistant to certain antibiotics and meds and others are not. I believe i may have been colonized while i lived on a commune for 3 years. we had many people there, so it seems like a likely origin. not the best hygiene, questionable food storage, etc. i will keep posting updates.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 4:24 am
by Hexrain
i also meant to ask this. my doctors assistant says there is only one lab to test for pylori. is this organization related to that lab?

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 4:54 am
by Hexrain
Source Material for H.pylori and ETD OTITIS MEDIA W/EFFUSION

https://www.ncbi.nlm.nih.gov/pubmed/16647533

https://www.ncbi.nlm.nih.gov/pubmed/15995518

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3745192/

https://www.sciencedirect.com/science/a ... 9418301447

https://www.scitechnol.com/peer-review/ ... le_id=7893

There are loads more... It seems to me, that some of the issues (Why 50% of studies seem to deny a correlation) are in testing to reveal the presence of H. pylori. It seems from reading, you may have to have a certain bacterial load to have it detected in stool. The breath test just seems silly to me. The only sure fire way seems to be endoscopy, which is invasive and expensive.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 5:02 am
by Hexrain
This one compares PCR detection to tissue sample detection (Histological). not a comparison of Breath test or stool but just to illustrate that tissue samples seem to be the way to find it with certainty.

https://www.omicsonline.org/open-access ... ?aid=16317

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 9:35 am
by Helico_expert
I have a quick glance at the articles you shared.

My first impression is that those articles are not from main stream journals. Coincidentally, they are all published in Iran, Egypt, and Turkey. They are probably true, but I would not say all ETD Otitis are caused by H. pylori. In many other examples, because antibiotics used on H. pylori are so strong, they kill off unknown pathogen that causes problem elsewhere.

PCR in my opinion is over sensitive and have too many false positive cases. Which is why PCR has never became the recommended test in the H. pylori diagnostic guidelines.

All diagnostic tests rely on bacteria load, including histology. However, histology is able to guess the presence of H. pylori by checking the activity of the immune cells. as a result, histology remain as the gold standard for H. pylori diagnosis.

Then again, breath and stool tests are still very accurate in most cases. Because they are non-invasive tests, patients can get them tested easily in clinic. We can discuss further if you are interested to know how breath and stool test can give false negative/positive results.

I do not believe that Pantaprozole/Omeprazole plus yogurt/garlic/bismuth and several other things besides antibiotics can effectively kill H. pylori in vivo. many people tried and failed. They probably only work on a small group of lucky people, but definitely not general public.

There are indeed many different strains and species of H. pylori. From clinical point of view, they are all the same. They all can be killed by antibiotics and can become resistant to antibiotics.

Lastly, H. pylori only colonises in the stomach. Can the toxin travel to other organs? maybe, but not proven. Can the local inflammation in the stomach trigger inflammation else where? maybe, and have been proposed many times. But study like this is hard to conduct.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 11:28 am
by Hexrain
Im not trying to suggest that ALL Otitis is H. pylori related, just that their is a correlation between Otitis and detection of H. pylori. I am also suggesting that much more research needs to be done. I also think that someone like me (who has had chronic Otitis for 6 years and 3+ rounds of antibiotics to no avail) might find that it is a possible avenue of exploration. I know that i have tried EVERYTHING to control my Otitis, with absolutely no significant relief until put on a PPI. as im writing this, some of the Otitis symptoms seem to be mildly evident again, but it is still more relief than i have had in 6 years.

I definitely have found studies that tested for H. pylori in adnoidal tissues and confirmed it's presence. I will try to find them and post them.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 11:31 am
by Helico_expert
How about we deal with your H. pylori problem first. Then we see if your Otitis problem resolve over time? That would be a good example and record in here.

Re: ETD & Chronic Otitis Media w/Effusion

Posted: Tue Apr 16, 2019 11:39 am
by Hexrain
thats what im attempting to do.

Adenoidal detection and detection in effusion:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4138655/

I really dont see the problem with studies from other countries, as long as their methods are sound. The US, is great and all, but other countries have just as competent doctors as here, and their healthcare systems generally function better.

You never answered whether or not you are an MD. I am curious to know what your expertise is.