Saturday, January 29, 2011

Chronic Sinusitis+no Insurance=trainwreck: my sinusitis history

I posted this at The Experience's my sinus story.   Feel free to repost so long as you copy and repost in entirety

Chronic Sinusitis+no Insurance=trainwreck  Posted January 25th, 2011 at 8:56PM

Once upon a time (2002) I was a happy little person. I was a glowing picture of health, except for occasionally still having a touch of my childhood asthma. I commuted miles and miles by bicycle in the scorching heat. I moved in with my soon to be wife, whom I was swooning over. I was 30 and I felt licensed to not care what anybody thought of me. I made(bad) paintings and (okay to good) poetry. I had friends and was very happy.

Then I had a postnasal drip. Drip, Drip Drip. Benadryl wouldn't stop that drip. Then the drip turned into a cough. Then the cough turned into a wheeze. Then the wheeze turned into gasping for air while coughing up green chunks. Well, time for the doctor, right? But I had no insurance. SO I paid, and I paid. And when close to every last cent of my money was spent, I moved in with my mom(along with the fiancee) so I could afford "lung rent". Which was half my paycheck... And earning that check was fun.

I had to eat caffeine pills like they were candy to overcome the fatigue, and sometimes was breathing so poorly I could barely walk. The asthma eventually responded, but the fatigue and "allergies" remained horrible.

So I went to get allergy shots. When I went to get them they tested my asthma on a very expensive pulmonary dingus, and found out my lungs were still horrible, so I got some more meds for my lungs.  That was swell.  I probably was minus about a third my lung capacity.

In order to get allergy shots, you have to get a rast test-which is like being attacked by a very organized bunch of fire ants. Everyone at the clinic was very impressed by how much my dots connected and swelled around my arms. So I did allergy shots for awhile, and worked, and went to school, and ate caffeine pills because I was still tired all the time.

I thought I was depressed. Okay, I WAS depressed. But I thought the tired was from the depression. So I kept trying new happy pills and wondered why I was still so tired.
Then my ear became infected, such that the eardrum burst out. Finally, I paid for the hundred or so it took to x-ray my head. And....spectacular sinusitis! This was in 2008, so I'd been living with an infection in my head for 6 years.  This neatly explained why my allergies and asthma had gone from a minor annoyance to a whump!splat! experience...and those funky low-grade fevers I kept running.

My doctor gave me antibiotics.  Then some more.  Then some different ones.  Then some really strong ones backed with Prednisone.  He suggested stomach stapling out of frustration, since he believed my weight was part of the problem (and right).  I'm glad he said that-it shook me up so that I didn't need the surgery to lose 120 pounds...just a yearlong miserable slog. Wanting a life back is really motivating.

But as for the sinus disease-it wasn't going away sans surgery. So my wife and I paid all the money we had to a doctor in Mexico who said he was going to "fix me up."  What he did he did well, but he only did about 30% of the needed operation, so the symptoms returned within six weeks.

So I went to the county health system, which is pretty incompetent.  I have gotten surgery, but the infection is still there.  The intern doctors seem to be afraid to treat aggressively post surgery, and my symptoms are back four weeks on.
So I'm taking matters into my own hands.
I am taking illegally-purchased Prednisone from New Zealand and some American antibiotics packaged for fish-but at the same dosage and quality as for humans.  I am not happy about that.  I have begged three interns in succession for antibiotics that haven't been used before.
This one did give me antibiotics, to be fair-irrigation antibiotics, when my sinuses were probably too swollen for the antibiotics to penetrate-he couldn't 'scope them.
Besides that, irrigation antibiotics alone haven't been shown to be terribly effective in NIH research, yet the county people seem to be awfully keen on them.
The intern did give me irrigation steroids, but those are only so effective at controlling the inflammation. He gave me no systemic steroids.  I gave me systemic steroids, and Bactrim, although I do remember Bactrim being used before-but only once, and it was one of the ones that really worked.  Yes, I know to watch for a rash, and go to the ER and confess, med bottle in hand, if I have to.

I started winging it last night.  Today I have a sense of smell.  I now do dropper irrigation and have a volume increase in my sinuses by (guessing) roughly a fourth between last night and this morning.  I am taking notes so that if there's a crisis and I'm not able to answer questions it's in writing.  My phone is on an charged, my wife on alert.
I still don't like this at all.

People have asked me if I'm arrogant enough to think I know better than my doctors-overall, the answer is no.  My particular condition? OH YES. Doctors, just because you have the medical knowledge to place your patient's answers in a framework, and to know how to combat the condition effectively-maybe; this doesn't mean you know their condition the way they do.  For crying out loud, take what the patient says seriously! Playing detective is what you need to do-you are interviewing the eyewitness, not imparting wisdom from on high like a Babylonian deity from the hills!
And I've been treated for this since 2008, so maybe I've picked up an idea of what's wrong and what *might* work, alright?
Work with me and don't make me go behind your back like this!    I don't want to!

I'm doing inverted dropper irrigations with antibiotics/steroids now  as well as continuing twice-daily irrigation with a water-pik, been doing that for a while. Salt/baking soda irrigation is great. I get a lot of green stuff out this way.  Now I am putting xylitol in it, because xylitol has been used to treat resistant wounds, and because it's a pretty innocuous substance.  I'm hoping this will help make the bacteria more susceptible by breaking up the biofilms in my nose.

If you have sinusitis, look up information on biofilms-preferably a layperson's guide to what they are, and Allergic Fungal Sinusitis(AFS), particularly the Mayo Clinic's work on same.  I feel I have a better grasp on the causes and what might help my condition through reading up on those topics.  Also, you must do saline irrigation, because chronic sinusitis means that your cilia can't clean your nose right.  You have to help them through irrigation, hydration, and occasional expectorants.  Also hot peppers and horseradish/wasabi if you can tolerate it. Furthermore, hot white tea is good for fighting inflammation AND all hot beverages stimulate cilia to move the mucus faster.  Fennel and horehound help thin mucus, but of the two, fennel's tastier.

If you think you have a sinus infection-for the sake of whatever deity you believe in-go to a ENT immediately!  it does not take too long before permanent damage sets in.

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