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Old 10-11-2007, 08:40 PM #1
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Default Nasal culture was negative...

I don't understand it, I saw the swab and it was yellow. Now what? Anyone have any ideas here? Tuesday was the last day of my Z pack, which I guess did no good anyway since there was no bacteria. My ears are unblocked and my lungs seem to be OK, but I still have horrendously thick drainage running down the back of my throat. If I let up on the regimen below, the productive cough fires up again...

The ENT Nurse Practioneer said she felt it might be related to Sjogren's... Great. Isn't there anything else I can do to relieve this? Or are you just stuck with it if you have Sjogren's? This is really miserable.

Here is what I am currently on for this stuff:

Nebulizer w/Pulmicort and Xopenex 2 X daily
20 mg Prednisone
Mucinex
Irrigation-3, sometimes 4 times daily-Using Sinus Rinse and a couple of drops of peroxide (I even broke down and used Alkalol, which burns like fire)
Singular-Pulmonary doc ok'd starting today

Thanks,
Cathie
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Old 10-11-2007, 09:10 PM #2
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Default Sjogren's website

Cathie,
The Sjogren's website for the forum is www.sjogrensworld.org.

Mucus is one of the products of Sjogren's. The body produces mucus on a daily basis and with Sjogren's sometimes the mucus gets really thick and gross. The ragweed, pollen, mold thing is really bad in Texas right now and it makes the mucus even worse because the body tries to produce more mucus to deal with the allergens. The only thing I'm finding that does any good is lavage and something to moisten like the Saline Spray. Even then it's still bad, ..but my sed rate is still up so I'm not sure what to tell you. You might try stopping the household scents, perfumes, perfumed bath washes, perfumed soap, etc. (thought you already did but wasn't sure).

Wish I could help more. And no, you don't ever get really used to it.

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Old 10-12-2007, 12:30 AM #3
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Thanks Billye... I have about lavaged myself to death tonight. I did try the Alkalol, although at first, the odor bothered me.

Boy, it sure cleared out the mucus. Trouble is, after a while, it comes back. I cannot imagine how in the world I am going to cut my steroid dose like this. Cutting the dose usually results in some sort of flareup, and it looks like the lungs/sinuses, etc. are the draw of the month...

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Old 10-12-2007, 05:51 AM #4
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Default Negative for what?

Do you know if they were just looking for bacteria, or did they also try to culture viral and/or fungal pssibilities?

Many people who start out with infection in that area from one type of minature pathogen wind up with oppotunistic secondary infections that take over and crowd out the original . . .and can be really hard to get rid of . . .
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Old 10-12-2007, 09:13 AM #5
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Lightbulb hmmmm....

You know when you get an upper respiratory thing/infection, it is typical for the cells to keep producing mucus long after the infection is over. This can be for 2-4 weeks.

I have some misgivings about OVER use of the Netti pots. Basically tears and other secretions contain natural antibiotic substances, and washing them away with chemicals seems rather harsh and non productive to me.

Certainly if you get a snoot full of dust/ or other chemicals from the environment, a netti may be helpful. But 4 times a day? The burning side effect, I would pay attention to..and avoid whatever burns. I think Cathie you could be overdoing things. just my opinion.
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Old 10-12-2007, 10:20 AM #6
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Default Agree

Cathie,
I agree with Mrs. D,
I only use my sinus wash maybe once a day or sometimes every other day. I know the mucus is hard to bear but overwashing will make the nasal passages too dry. The body produces mucus for a reason. I'd listen to your body. Course, that's just my opinion too.

Billye
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Old 10-12-2007, 03:59 PM #7
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Default

OK. Input well received here. The ENT though did say to use it twice w/saline. I will cut back to once though, because I think you are right about overuse. The cortisone nasal spray is drying too.

I just cannot get all of the mucus out and the amount was really awful. I went to the Sjogren's site Billye posted and I see others there with similar problems.
I am better though...

When this first started, it was moreso in my lungs, I think. Now it is in the sinuses.

Glenn: She didn't say, but I will find out. Thanks for the suggestion.

Cathie
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Old 10-12-2007, 04:55 PM #8
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cathie,

here is site that iwll give you the pollen count for our area daily. ( high today) not sure if any allergies might be causing any problems. i have had chest congestion, which has gotten worse the last 2 weeks.

http://www.entdocs.com/dailypollencount.htm

i need to find the other site i have...it has the mold count.

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Old 10-12-2007, 10:42 PM #9
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Cathie this is an area that I have personal expertise in, unfortunately. My experience with 20 years of dealing with sinus stuff comes down to a few things:

1. It takes a LONG LONG time to clear up an infection, and green or yellow guck will last longer than you'd expect.

2. Cultures are always negative if they're taken while you're on antibiotics. They should be done first. An organism can be partially sensitive to an antibiotic, and not grow out while you're being treated, but if it's not very sensitive to it, it might not do the trick. One way or another, it's par for the course for it to be negative at this point, and doesn't mean anything one way or the other.

3. Alkolol definitely helps break up mucus, but don't use any more than you find totally comfortable. I use maybe a tablespoon in 600cc

4. All the docs I've seen, and the sinucare.com website my doc put up, recommend irrigating twice a day. I find that even under the worst of circumstances, that helps. Once a day works when I'm stable, but not when the stuff is really thick.

5. During the day keep moist by using a saline nasal spray, or pump, just a few puffs, to keep the mucus membranes moist and functioning.

6. After healing, and you will, you'll still have to deal with thick secretions, most likely. Definitely if you have sjogen's, and maybe even if you don't. Once you're better, using the Grossan or netti daily is going to help.
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Old 10-13-2007, 12:25 AM #10
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Geez. This stuff is driving me crazy tonight. Now, it feels like it is in sinuses and back to upper lungs... Drip drip, cough cough... To add to my embarrassment and humiliation, my girl friend told me she could not find me in the store yesterday, because I was not clearing my throat...

The ENT nurse said they will repeat the culture at my next visit. I couldn't find out what they looked for Glenn. They close early on Fridays... This culture was done in between 2 different courses of antibiotics...

I think most of the things that have an odor to them have been removed from the house...

Cathie
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