one has to be careful
 

about that site.

People post all sorts of stuff...not all of it may be true.

Levaquin is not an innocuous drug but compared to dying of some infection,
it might be necessary for some. The trick is for the doctor to do what you need, not what some salesman encourages. And for a PN patient, Levaquin may be a poor choice. But then there are not many options left, besides IV if that happens.

I read that site when I started on Zetia this summer. And not ONE thing mentioned on it happened to me. There are horror stories galore there.

I think in your case, Cathie, you should be evaluated for other causes of pneumonia/pneumonitis.

I know this is on a different note but still may help about all your docs comunicating. Have you made any progress? I was thinking if maybe a few minds worked together and also about possible interactions between everything that is going on. Sending still many thoughts and a million hugs.

Nope. No one is really talking to one another. This causes so much stress on top of feeling badly.

The Internist will want a bronchoscopy done, he has already mentioned this. Maybe then, docs will start talking. Getting an appointment for this is another thing. After my last experience with the pulmonary dept. at the med school, I am not so keen on going there. Besides, they said I would have to wait until February. I don't think this can wait..

Is there anything over the counter anyone knows of I can try to open up my head? I fear it may be neural involvement with the eustacian tubes causing this, but have no way to tell... Ears and head are totally blocked and feel like they are ready to explode... Any one good decongestent better than another?

Meanwhile, 30 mg of Prednisone has turned me into a bigger witch than I already am...

Cathie

sinuses
 

I get constant sinus infections, Cathie, and each time the sinus guy endoscopes my sinuses to find the organism and figure out which antibiotic to use. When I have them, the only way antibiotics work is if I have some prednisone at the same time, to decrease the swelling and give the antibiotics a chance to get in.

I dont' know about the floaters, but LOTS of visual symptoms come from medications, and not often from anything nerve related. And if you're not on gentamicin or another micin drug, that wouldn't cause the hearing problem. That's probably from the sinuses.

So irrigate irrigate irrigate, and let them search for organisms (It's way harder when you've already been partially treated).

I use the Grossin Irrigator, and my sinus guy likes it because it gets a large volume going and going in the right direction. You might google it and check it out.

I know how totally lousy these things feel, and hope only the best for you.
It's is in your head; your sinuses. It's also in your chest, apparently, not uncommon with sinus infections or with sjogren's.

Hope this helps...

Oh, and dont' forget the deep breathing for the atelectasis/pneumonia. You need to use a plastic tube that you get in a pharmacy, or balloons.

Groan... I had 2 doctors' appointments today. My ears are a mess now and it is affecting my hearing. Hearing test-not good, rt. ear hurting quite a lot, eustacian tubes are a little open, at least. I can see some improvement, but still have a very productive cough though not as deep...

ENT nurse practioneer agrees about the sinus/ear connection. My Internist doesn't think I have a bacteria one in my body after all I have taken.

I do have the Neal Med Irrigator, which Billye recommended for sinus irrigation and a bunch of balloons. Party anyone? I think I will have to take a raincheck on that...

I have so much to focus on, I am trying not to think about eyes. One of my main concerns is-How in the world am I going to get back down from a dose of 30 mg of Prednisone?

Hanging in there,
Cathie

I fear I am in trouble. I have not had to be on this much Prednisone in 15 years. At this dose, I should feel no breakthrough pain, but it is there, in full force this morning. I suspect this is being driven by an infection.

No one has done any bloodwork or cultures. Treatment for the RML atelectasis and ears has been based mainly on X-Rays and visual inspection of my ears under the microscope. I am not currently on any antibiotics. My Internist is trying to manage the atelectasis, but is not in the office today.

Drainage from sinuses last night was greenish, although today, it is more clear and blood-tinged.

So where does one turn next? My way of thinking is that this is where people can get in a LOT of trouble, when the steroids mask at least part of what is going on...

Cathie

something to consider
 

I don't know, Cathie, if you have tried Singulair?

This is an anti-inflammatory/anti allergy drug that is very effective.

I have been using it for over 3 yrs for fluid in the ears and allergy issues from work (the drugs I cannot avoid being exposed to that I am allergic to).

Originally Singulair was intended for asthma, but lately it has branched out into the allergic area, and I personally think it is more effective than antihistamines.

One cannot however, switch rapidly from steroids to it. A careful taper must be done. But for maintenance for breathing/sinus/ear issues, I think it is extremely useful. So think about that, and bring it up to your doctor next time you see him/her.

Interesting point, MrsD. I have used it before, although the Pulmonary Doc never said anything about tapering. Why does this have to be tapered?

He did not bring up using it in my last visit. I will address that with him or maybe the NP. ENT Nurse Practioneer put me on Astelin nasal spray and Nasonex.

Today, she did bloodwork, cultured the nasal cavity and sent me for a CT Scan of sinuses. She can see large strings of (yuk) yellow mucus hanging down the back of my throat.

I had thyroid surgery Aug 16th. My first trip to the Urgent Care was 9/13. I have had 10 doctors' appointments including that one, since then pertaining to this... Enough already...

I swear, I don't know if additional steroids are helping or hurting...

Cathie

patients who are on high dose steroids...
 

who are switched to a leukotriene B4 blocker, can have reactions.

There are two drugs in this family... Accolate (twice a day)
and Singulair once a day.
People on high dose steroids (common is severe asthma) have had this reaction:
Churg-Strauss syndrome

But it is pretty rare.

One has to take the med every day, even when feeling well, skipping around on it doesn't do much good. It has been fabulous for me.

culture
 

Keep calling and bugging them about the results of the culture.

You're ill with a bad sinus infection, and it's probably the cause of the atelectasis. All that ***** junk in your nose irritates the lungs. You need to be on the correct antibiotic, and you need high volume irrigation. If you've got the water pik irrigator, use it 3 x/d, fill it up to full with the salt.

I like Breathease, as the salt is premessured, but if you don't have that, get a recipe for making the saline.

Add Alkalol to it, as much as is comfortable.

Consider adding a DROP or two of peroxide, not more.

mucinex or generic.

Go to http://www.sinuses.com/ and read about how to irrigate. This is probably the most important thing you can do for yourself. (PS. that's my doc's site.)