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

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.:hug:

Billye

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...

Cathie

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 . . .

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.

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

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

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.

:hug::hug::hug:

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.

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

you want to make sure
 

you are getting enough Vitamin C and antioxidants.
So you can heal up.

http://www.nctcog.org/trans/air/

this is north central texas council of governments. it has the daily ozone alerts.

:hug:

www.pollen.com

just put in your zip code and your local pollen counts.

I know I'm clueless but want to help you so and was wondering if this could be part of when you had pneumonia? I know when I had it the congestion and draining was there for a long time after. I also had so much pressure in my chest still. I wonder if the pneumonia is not gone or this is the aftermath still and your still having symptoms.

I'm a Sjogren's gimp (mine is severe, systemic, and accompanied by a slew of other autoimmune issues) with 3 years of med school behind my broken back, so... this is just my opinion as a med geek but even moreso as a sufferer that has had all kinds of Sjogren's problems.

I agree that you definitely don't want to overdo the sprays... rhinocort, pulmicort, etc... if you use too much for very long, your body gets tolerant and stops producing its own corticosteroids, so... careful and conservative with that and prednisone!! Even the nasal spray will deliver some to your bloodstream, just like injections of it at the joints (which I've had)...

Mucinex=good stuff. If you have Sjogren's, I recommend taking it every day-it is good preventative medicine for Sjogren's, allergies, and even smoke exposure (first or second hand) as it keeps the mucous thin and less likely to get infected... depending on how much you're already taking, 4 a day of them is perfectly normal, and honestly, you can go really high for it-they give megadoses for fibromyalgia, for example, with very few people having side effects aside from a runny drippy nose, which you'd probably kiss the ground in New York City to have right now.

Try Theratears nutrition--it's a supplement made by the same people whose eye drops my eye docs swear by (and they're big on the supplement, too)-very highly controlled marine lipid oil, flaxseed oil, vitamin E... good for eyes, nose, throat... BUT only take 1 a day, not the 3-you don't want to overdo the vitamin E in particular.

If you are taking supplements by means of vitamins, they could be causing problems... even Vitamin C pills are a big bad no-no (I teach college Nutrition classes... while vitamin C in JUICE is great-it's an antioxidant etc-in pill form, it's actually a pro-oxidant that can do a lot of harm). Folic acid, on the other hand, I would recommend...

If you have Sjogren's (I can't tell from this post whether you do or whether it's just a possibility), a couple more things could help: Plaquenil (an antimalarial DMARD) and Evoxac (which stimulates the parasympathetic glands, causing spit and to lesser extents tears and mucous to be produced in better levels). If the prednisone is chronic, please, for your bones' sake, taper the level down. If it's just a dosepack, 20mg is alright. You don't want to stay on that for long at all if you can help it, though 5mg/day is an okay amount in the long run to prevent more problems...

Sorry this is so disjointed; I'm having a bad flare-up and very distracted by my digestive tract being kind of ... upset... today, so I'm typing in a hurry so I can race to the bathroom in case it (again) catches me off guard.

Feel free to email me if you have questions about anything related to autoimmune illnesses.

Oh yeah, I'd also be really interested in knowing the kind of full span of your issues-do you have vertigo type things going on along with this? Reason being my sister went to a fabulous ENT that made her realize her own sinus and ear issues were from 2 different things-one she takes rhinocort for, the other she has to do exercises for to shift these yucky granules in her ears around until they get flushed out. With Sjogren's, the granule type things is a common side problem, so I thought I'd see what is going on in your head besides just this little snippet my google alert linked me to!

Hope you feel better pronto!!

I don't know if this is part or not. I haven't had another chest X-Ray, so don't know what that looks like now.

I missed using the nebulizer once today... Not good, started feeling like bronchitis or pneumonia coming on... Called doc-not to worry, lots of allergies going on right now.

I know there can be lung involvement if one has Sjogren's, but I don't know if there is one lung doc in this whole area who knows anything about it. I have always thought my pulmonary doc was good, but maybe he has never seen Sjogren's involvement...

I got so disgusted, I ate a bunch of cinnamon toast for dinner.
Cathie

Uh oh... I think Curious has been doctoring up my post... :) My cinnamon toast is in the RED!!! Well, I know it is not a very healthy coping technique, but it sure was tasty... :)

Oh, I forgot to mention that my phone call to the pulmonary doc ended with him suggesting I got up to 40mg of Prednisone. Well, I am sorry, but that is NOT going to happen. I have been on this stuff daily now for over 15 years and I am NOT going to do that... The objective here is to try and get back down to my maintenance level, if that is possible. I will just try to stick it out with the nebulizer and other stuff...

And Singular??? Well, the pharmacist told my husband it can make people irritable. That is an understatement. I am already HIGHLY irritable due to steroids. I have had UNBELIEVABLE nightmares and irritation at volcano level. Yesterday, I woke up to a nightmare where I was smearing huge plates of pancakes madly all over my husband's head... Did he do anything to bring this on? I don't remember that part of the dream... :)

Cathie

Hi Nallukka:

Welcome to our board here. You will find lots of good information and friendly people here. I would imagine you will also be full of a lot of good information yourself.

I will email you a respose, as the issues I experience have been dragged out on this board to a phenomenal length...

Hope you are having a good day today,
Cathie :)

Oh, NO...
 

Not a 'roid rage? Steroids are tough!

I have no problem with Singulair...nada. I have been able to be almost 100% inhaler free... excluding environmental insults that are unforeseen.

Here is the reported side effect list:
http://www.rxlist.com/cgi/generic/monteluk_ad.htm

It is one of the most mild tables of side effects I have ever seen.
Singulair metabolites are excreted thru the gall bladder. That is the only major factor I would consider, in those with biliary cirrhosis, which is not common.

Some small children exhibit irritable behavior with allergies, and hence on Singulair. But it is not common either. In general people who are sick are easily irritable and it is very hard to prove it is the drug causing it.
This means it does not cross the blood brain barrier..
So one would not expect much in the way of psychiatric side effects.
Here is the FDA reports (623 compared to 2100+ for forteo which is not nearly used as much)
The most common appear to be in small children, and convulsive.

Steroids are really really hard on the body. They create huge problems in comparison. So I hope you will give it a try at least. If it does not work for you, then at least you will know that.

edit to add: Small children and the very old, often have blood brain barrier faults. For example, Zantac and Pepcid can cause
delirium in the very old, while not causing this in other age groups. When the blood brain barrier fails many drugs and viruses and bacteria and peptides from food, can enter.

How interesting, MrsD. Well, guess I cannot blame it on the Singular-need to find a good article or two on steroid rage... An older friend I used to know was on 15mg Prednisone q.o.d. I could tell by talking on the phone whether it was her off or on day... She was NOT nice then... Since I am on it every day, and an elevated dose at that, take a guess about the level of "nice" around here... :) Husband is thinking of taking on another job, so he will get a break... I think he got a little nervous over the pancake story.

Something is causing me to see things that are not there... My cinnamon toast-I swear it was sooo cute in red... Now it has disappeared... :) Hello Curious, are you the toast doctor??? :)

Hope you all are having a good day... It is raining like mad here... The Yorkies are NOT happy campers over this.

Oh, MrsD: does this mean that a person who has been on Zantac or Pepsid for years should try and find something else to take instead if they are, aahhh, getting on up there?

Cathie

i think you really wanted him covered in syrup. :p

the cinnamon was a good thing. next time...just lick it off the bread. :D


hey...did you get pumeled by rain? i barely got the kids to school today. the roads were flooded. oops...just saw you did. the vets office behind me had all the animlas crying this morning. it was so sad.

now roid rages...i can tell you stories girl. years of being in the health club...oy.....:rolleyes:


hehehe...cathie..did you do a search for cinnamon toast? when you search for words...they appear in red. :wink:

I am with Glenntaj....they cultured for some types of bacteria.

Altho sprays and irrigations can help some stuff, if you have an infection it simply forces it upward and inward, to areas that you do not want infected with some hard to kill germ.

I would find out what they cultured for....did they check for opportunistic infections.

Did they check for Aspergillosis?

Also, it does take a while for the junk to come out, however, it should be getting better if you are on your second z-pack. Azithromycin otherwise known as zithromycin stays in your system for up to 30 days...the drug that keeps on killing....It is good stuff for most germ killing, where would we be without it....however,
you might want to check out side effects for floroquinalones. It is not PN friendly.

Keep a close eye on yourself.

cultures
 

My doctor always does a nasal endoscopy to get culture material, and he sends fungal cultures both to Mayo and to Quest. They take weeks to grow out.

I was cultured last Monday, for instance, and the bacterial cultures are back, growing out two rather resistant organisms, but they ARE sensitive to Wilson's solution, so my sinus guy has called the pharmacy to compound Gentamicin for irrigation.

I disagree strongly about pushing the bacteria inside when irrigating, and I really don't want to see anybody with sinus problems urged to stop this miracle step. Irrigating helps wash out pus accumulating in the sinuses, and it's pretty visible. It helps thins the thickened mucus. If you use the grossan irrigator, it even helps stimulate cilia to beat. And antibiotics can be put in it.

Mucinex, btw, is now making a nasal spray. I haven't seen it or read its contents, but I did come across an ad.

And in terms of irritability: I can vouch for sinus infections making one irritable. It's hard to feel good with inflammation that close to the brain. It feels like the brain is involved.

Mucinex nasal spray is nothing new:
 

http://www.americarx.com/Products/30008.html

It is similar to moisturizing Afrin.

What if you are irrigating and your germ is resistant to what you are on, and it gets into your sphenoid bone? Three boys died this summer from some odd amoeba they caught swimming in a lake...nose to brain.

Sure it is a long shot, but those kids were not immunocompromised. Sanjay Guptas advice...swim with nose plugs on. I think I will stick to a pool from now on.

I don't think you should stop doing what your doctor tells you to do without discussing it with at least his nurse, however, sometimes it takes persistance to get your point across to them.

Irrigating any infection, whether wound or otherwise without it being treated, for spread can be iffy.

Hmmm
 

What you say sounds totally reasonable, and after reading what you just wrote on another thread about drug metabolism, I am swollen with respect for you.

I know my doctor wants me to use distilled water, but that's not sterile either. What you're saying sounds totally plausable, so, I'm just going to think about it a bit.

I do know that irrigating when my secretions thicken has kept me from requiring antibiotics for my sinuses for most of two years now. Before that I was on many antibiotics, including intravenous. The drainage opening of the ethmoids is scarred shut, and my non-surgical sinus guy--the one I go to to stay OUT of the hands of surgeons---is thinking it will need to be opened again. My sinuses are on the edge of tolerability, and growing out two weird organisms. But hydrocortisone (just in replacement dose) for 3 days with irrigating religiously seemed to get it under control.

I just don't know what to say here. I've bought the conventional wisdom, and it's worked. I do see what you call the potential danger. I just don't know how to measure the two.

Drowning down here to the tune of 5.75 inches of rain today... Enough already!!!

I don't know what to think about the irrigation either. The Nurse Practioneer first told me to stop irrigating and said not to irrigate when I had an infection. Another nurse in the ENT office called back and said the doctor wants me to irrigate twice daily with saline... That might have been after the culture came back normal-lost track at this point...

So considering that this seemed to be helping, other than the burning, I tried again using saline, but only once yesterday. Maybe I was just doing it too much.

We shall see. I feel a lot better today and am not having the issues with all of the mucus... I don't know whether to attribute that to the Z pack or what. The lung doc informed me I am running out of antibiotic options though. He said the only thing left in this situation is Sulfa, and I am allergic to that...

I guess the test will be when I start going down more on the steroid dose. This is when this stuff always hits... I plan to address the sinus endoscopy with the ENT in my followup visit and also what they cultured for...

Curious: Yes, I did do the search for the toast... I could not remember where I posted... :)

Cathie

MrsD: What happens to the metabolites when you don't have a gallbladder any more? I have wondered if having a fatty liver might be why I have some wierd drug reactions...

Cathie

gall bladder...
 

You still make bile. The metabolites of Singulair are excreted thru the bile.
Like cholesterol is.

Obstructive biliary disease, impairs the flow of bile, and is very serious.
You'd be sick all the time with it.

HI Cathie, Besides the Z pack, i find biaxin to be very effective for my numerous respiratory infections. Actually i use biaxin , every once in a while the doctor will prescribe z pack instead. Quinolones like levaquin never work as well and Avelox is out totally, got me very sick.

Irrigation
 

As someone who's lived with chronic, recurrent sinusitis for over a decade, maybe two decades, I just want to emphasize a few points.

It is NOT necessary or good to put so much alkalol or salt in the irrigation water that it hurts. Just as much alkalol as you're comfortable with. Something less than a teaspoon of peroxide. And the salt solution works best if you use kosher salt and baking soda, if you make your own, according to recipes given on the sinus sites, OR, use Breathease, which is pre-made and non-irritating.

I've not found a single ENT who would not encourage irrigation while infected, and it certainly makes one more comfortable.

But keep everything clean, and use distilled water preferably.

Antibiotics should be matched to the organism, and they can vary, so what works for one might not for another.

Good luck with this one...

you know....
 

I've been sitting on the side lines here... keeping my mouth mostly shut.

I think nasal irrigation is creepy. I would never do it, just because.

It is not so expensive to buy STERILE irrigating solutions. Distilled means nothing. It means that there are no minerals in the water. But the collecting containers with regular distilled water are NOT sterile. Who knows the factory conditions present in preparing distilled water?

Sterile Sod Chloride for irrigation or Sterile water for irrigation seems to me
to be a safer alternative. Both require Rxs from doctors.

I consider excessive or careless sinus irrigation similar to cleansing colonics or enemas.
Nature intended certain orifices of our body to be ONE way only. Introducing liquids backwards, defies the normal functions, IMO.

So I am a bit relieved to read Cyclelops' posts.

The olfactory bulbs in the nasal passages are a conduit for drugs/bacteria and viruses right into the brain.

I'm struggling over this one. I think that high volume irrigation makes no sense when one is well, but from what I know of what I've had, there have been times when I've bdeen filled with pus, and high volume irrigation cleared it out.

But I don't do "high volume" irrigation all the time, and see reasons people wouldn't want to.

My sinus/nasal mucosa, my doctor says, is abnormally dry. He says that the dryness is a problem; that the cells lining it are unable to do their normal job of washing out bacteria, and that light irrigation, with a spray bottle, is important during the day. When I'm feeling well, I never do this. I just don't have the discipline.

I think maybe Cathie has dry mucosa from sjogren's and her doctor may have the same fears as my doctor. Also, I think she's currently infected.

On the other hand, I've never been prescribed sterile saline, and I'd sure like to have it. I don't recall why I haven't been prescribed it. I'm going to ask.

In Australia we have a product called FESS which is a non-medicated sterile buffered isotonic saline solution in a nasal spray form. The solution is buffered to a pH of between 7.8 and 8.3. A prescription is not needed and it is recommended after sinus surgery but can be used by infants through to adults as advised by a medical practitioner or pharmacist.

I'm sure you would have something similar in pharmacies where you are.

The FESS website is: www.fess.com.au

Well, I am doing better now. LizaJane is correct though, in that I have dry everything... The Pulmonary Doc at the school so nicely pointed this out and then asked me if I picked my nose... :) Some bedside manner... Guess he has not seen too many Sjogren's patients...

I found out something interesting about Sjogren's yesterday. The dentist said that the reason I have so much plaque around my teeth, which I am religious about flossing, brushing, rinsing, is because with Sjogren's, there is not enough saliva... I knew there wasn't enough saliva, but I sure did not know it caused plaque buildup.

Sure did not mean to stir up a controversial subject here.

Cathie

Can't some of the dryness be due to meds too? Also in combo of the illness? Glad your feeling better.

Perhaps Daniella, but dry mouth, eyes and mucous membranes go along with Sjogren's, so I am not surprised...

A Baylor Periodontist involved in Sjogren's research, told me that they are just now beginning to realize the extent to which Sjogren's can affect various body systems. Some doctors still are operating under the assumption that it is only about dry mouth and dry eyes, and this is simply not true.

It looks like this may include my Internist... I need to find something to take him to read on more current findings...

Cathie

education for your internist
 

Cathie,
Take him this: http://www.agingeye.net/dryeyes/sjogren.php and I have many more if you need them. I've educated my neuro and my rheumatolgist/intern by taking them articles. There are many of pub-med and other medical publishing sites. And if you go to the Sjogren's Forum, and go down to Useful Links section it is full of real eye openers on Sjogrens and the deadly effects on the body.

Billye

Wanted to throw one more opinion into the mix. Was out of town so sorry it's late. I too have Sjogren's and am experiencing my third bout of bronchitis in a year.

The problem with Sjogren's is that you actually can do too much of a thing that is supposed to be good for you, like drinking water. Sipping water frequently during the day keeps you hydrated. But gulping gallons of it will actually end up aggravating the dryness, I think because you are washing away things your body needs (sorry this is so vague, but I am very brain-fogged right now).

I suspect the same thing could apply to the sinus irrigation. Gentle rinsing up to twice a day with something that is not pressurized, like a neti pot, will help you keep hydrated without irritating your sensitive nasal passages. I am using a USP grade mixture of sodium chloride and sodium bicarbonate which has no preservatives or iodine and is isotonic and pH balanced, and it does not burn.

But I personally would steer away from high pressure devices like water piks. You don't want to blast away all the mucosa. And I imagine that rinsing too many times a day would start to sting after awhile.

I did the Zithromax for this latest bout of bronchitis/bacterial infection. Happily, the mucus is no longer green and my sinuses seem fine now (I used the neti pot once or twice a day too, and it helped). But the thick mucus plugs in my chest are still present and my cough has not cleared up.

In the past, my cough has always been the last to go away, sometimes persisting for a couple of months. I can't tolerate products like Mucinex or anything containing guaifenisen, so it is a challenge to clear up the congestion. My primary care doc believes the mucus plugs are a feature of Sjogren's, and she warned me that it is possible they won't completely go away.

Also, don't know if this is helpful or not, but I go through bouts of chronic fungal infections of the sinuses, mouth, throat. Gross, I know, but the ENT I had in Denver told me it was a product of the Sjogren's too. Those things would take months to clear up.

fanfaire
:cool:

Chiming in here
 

Fanfaire,
I've read posts from others on the Sjogren's forum that support what you are saying. When the dryness comes from within, it's hard to hydrate. I have found that drinking the miniumum required amount of water with my meals, (I have to in order to wash food down) will help with the overall dryness. But you have to let the mouth and nose have a certain amount of mucus or all the membranes dry out too much.

Billye