Sorry to hear that you no longer get relief when laying down. However, I still think it's a key component that it DID relieve it....since it 'seems' uncharacteristic of asthma or other inflammatory lung problems. Most during an asthma attack want to sit up as breathing is easier then laying down.

Does the SOB get worse when you exert yourself...like a flight of stairs?

So glad you're getting in with another rheumy next month...heck Sept is right around the corner.

The time when SOB disappears while lying down was when it was not this bad. Strangely, my SOB is just same whether siiting or lying down. But then its really bad when I'm bending or picking up something from the floor.

The breathing does not get worse when climbing the stairs...I think its the same. Though with difficulty, what with my painful feet, I still do walking and the stationary bicycle

Thank you.

I am on my 11th day of using both Sybicort and Spiriva. Thank God, my breathing improves. I stiill have SOB, but its not as bad as before the combo. I noticed the wheezing has become less frequent even with just Symbicort but my breathing was a labor. But, when I combined it with Spiriva, there was a significant improvement. Its not 100% normal breathing but I am good with my breathing now. Every now and then, there would be wheezing, tightness in my chest and the usual "hunger" for air.

Its my acidity and bloating that is bothering me. And of course, the ever consistent companion PN pain. I read that acid can actually cause SOB and sometimes if its too much, the acid can spill to the lungs and can cause scarring. I am on Nexium 40mg a day but its not giving me relief. I am even adding Ranitidine.

I must have mentioned earlier that the specimen from my lung is still being cultured for any more bacteria/germs to grow. It takes several months for some bacteria to grow. Yesterday, the Physician Assistnat update me on the weekly report from the hospital (where my specimen is cultured), I have a mycobacterium avium. She could answer my questions, e.g. is this the one causing my SOB or my "ongoing inflammation"? She promised to squeezed me in on Monday for a visit with the pulmonologist for an explaination on the avium and probably my treatment. I hope its not Fluoroquinolones. I googled the mycobacterium avium. It says that it normallly affects patient with HIV but it can also affect anybody else. THe physician assistant said that its probably because of my history of ileocecal TB that my lung has been compromised. Well, with this development on my lung, I dont know what is the next course of action.....I will know it by Monday.

Here is a treatment protocol:

http://emedicine.medscape.com/article/222664-treatment

Notice that Zithromycin or Biaxin is first line. These do not
cause PN as rule.

Most of the others may however, make PN worse.

If you have to take the drug(s) for a long time, also consider
probiotics for your bowel functions. Kefir daily is very good
and has 12 strains of various beneficial organisms to keep your bowel from damage or Candida(yeast) infection.

I will remember these antibiotics and will mention them to the doctors should I be given with antibiotics.

I dont know where I got this mycobacterium avium. It must be from soil when I do the gardening or it could be from the ducks and Canadian birds which lives by our pond during winter. The ducks stay inthe pond all year round.

Thank you for the tip.

Yes, birds can cause lots of infections. We are having West Nile virus outbreak here at home this year in spite of the low mosquito population. (it comes from birds bitten by mosquitos which then bite humans).

Also upNorth, is an endemic problem with Blastomycosis which is a fungal disease in water and soil. When our cat Weezie was so ill this summer the Vet we went to happened to be the local liason with the CDC on this and gave us a pamphlet to give to our vet here at home. She turned out to not have this, luckily, but some people and and dogs have contracted it up there. One man died, and some dogs have lost eyes, etc. It causes pulmonary problems in humans who inhale the spores.
Here is a link about a man in Florida who was finally correctly diagnosed with this:
http://www.dcmsonline.org/jax-medici...casereport.htm
While it is uncommon still, it does happen.

This is a story about the Vet we saw and his involvement with Blasto:
http://www.stignacenews.com/news/201...areness_o.html
As far as being rare? The golden retriever at the marina we use to get to our island, lost an eye to this disease several years ago. Dr. Groover saved his life, in fact. So we are reminded of this risk every summer when we see this dog Thor.

Most of the pulmonary infections from fungi come from inhaling dust or spores.
In Arizona and Calif there is valley fever.
And in the midwest here we have histoplasmosis from bird droppings.

i use biaxin or zithromycin for my respiratory infections. neither has caused me any exacerbations of my pn. biaxin is the much more effective for me. sometimes i have to take two courses of zithromycin to be effective. i switch off on them so that they both remain effective long term.

This is very scary....

I had a follow-up visit with my pulmonologist yesterday and discussed the course of action. He wanted me to be on these 3 antibiotics for a max of 12-18 months:

1. Biaxin
2. Rifabutin
3. Ethambutol

He explained about the side-effects on the eyes and liver. I need to be monitored every month for the next 3 months. I remember when I was on TB medication, it was supposed to be for only 6 months but it had to be extended for 9 months because it has to be adjusted due to extreme nausea. I was always feeling nauseated. I was h ospitalized for dizziness and vomitting. The most downside is while I am on this treatment, my rheumatologist cannot treat me with anything that suppresses the immune system (assuming I have autoimmune disease). Its good that I am seeing my new rheumy this Friday and I can discuss with her my predicament.

If only I have better choices....

I see no one has added to this post in awhile. How is your breathing have you figured anything out yet?

I have small fiber neuropathy and dysautonomia. I have the same breathing issues as you. No wheezing, no coughing and I'm convinced its from the small fiber neuropathy, namely autonomic neuropathy or the lungs. I'm also getting evaluated for sjogren's by one of the most top Ss doctors. And he said first blood tests, then saliva gland ultra scan, then eye test for dryness in a special way, then lip biopsy if two of the 3 tests dont come back positive.

The main thing is to get insurance to cover strong IVIG treatments. Thats the only thing that can restore nerve fibers quickly enough. Idk how affective it is with lung neuropathy. Also I dont think lung neuropathy shows up on typical lung biopsies or scans. i had all the scan just not the biopsy yet, im too nervous for it.. How was your lung biopsy?

I also suspect sarcoidosis too is not SS. i have very dry mouth and need to drink water all day long. But it could be from sympathetic overdrive... Tried to private message u but im new here and dont know how..