Have Bronchiectasis, recently diagnosed with pseudomonas
I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.
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Thanks Sue. Tyler does sensitivity testing automatically and it was done with each sample. My particular pseudomonas is killed by many antibiotics both oral and inhaled. Due to severe digestive problems my doctor had me try inhaled gentomicin with saline because there is a study that shows that antibiotic works great when combined with 7%. I cannot tolerate 7% so she ordered it with the .9% that I do tolerate. However, I struggled through two weeks of it and was supposed to start it up again 2 weeks later. My lungs are very fragile and I can't tolerate being on an inhaled drug one month on and one month off or two weeks on and two weeks off indefinitely.
Thanks Raney.
I was on antibiotics for MAC and am aware of the diarrhea issue. I unfortunately had extensive radiation for cancer years ago which destroyed my digestive track.
To make it worse, the radiation caused a cancerous colon tumor and the surgeon removed lots of both my small and large bowels - cut happy doctor! He said it was so damaged by the radiation that it wasn't doing me any good. Wrong!!!! I have had diarrhea and pain since the surgery 6 years ago.
When I was on cipro I couldn't leave the bathroom and that was before the colon cancer surgery. But I'm willing to try it if it will help me breathe.
Oh!! I thought the diarrhea was an otherwise healthy digestive track. I am so sorry you are experience all these issues. I hope the doctor can find a solution. I am sure you have already tried all the antidiarrheal meds and diets. May God Bless you!
Hi Rits..I am colonized with pseudo..Cipro snd or Levafloxin for 3 weeks didn’t work..I am presently on Colistin every other month for 3 years to keep pseudo at bay..miracle drug for me😎
Thanks Jennifer. I"m glad that you found something that is working although 3 years - wow! If you don't mind, what are the symptoms you have from the pseudomonas?
Interesting Sue. As I recall you didn't have a quick response to the antibiotics for ntm either. Ethambutol and azithromycin (I couldn't tolerate rifampin) cut my MAC to where it no longer showed up on my sputum in just two months. I stayed on the drugs for a year from the first negative for a total of 14 months and stopped all antibiotic treatment in June 2019. It's been more than 2 years of negative samples (so far and fingers crossed) and I'm hoping that I am like your husband and will have a good outcome with just one course of one antibiotic. Of course everything depends on what Dr McShane thinks is best for my nasty pseudomonas. And what she prescribed so far was a long-term inhaled antibiotic which I couldn't tolerate.
@rits..much more coughing, alit more sputum, dark green, and feeling really badly..I was in Ireland at the time..sputum eventually showed pseudo..alit different then MAC symptoms..this hit hard and fast..I suspect I was battling during the summer before my trip, but didn’t no it..on amoxicillin x2..only took the edge off though
Thanks. I'm still trying to figure out if my deterioration is because of pseudomonas. I have another ct scan coming up next month and a visit with my pulmonogist - all happening before my appointment with my bacteria expert. Sigh. I have more sputum but it's always clear . I have really bad shortness of breath keeping me home pretty much 24/7.
Megan, like you, one of my most irksome symptoms is shortness of breath. It intrudes into daily in a way that’s is difficult to ignore.
Your path to to being diagnosed sounds a lot like mine. I had terrible chest congestion, coughing constantly day and night tan or green tint sputum about 2 1/2 years ago. before that I would get so that I could not breath when exercising. Explained all this to my PCP. I thought it was my heart causing the breathing problems and the coughing was a bad case of bronchitis. I asked for antibiotic on 2 different occasions & the PCP ordered for 5 days or 10 days. I finally asked for referral to a pulmo., He ordered a sputum culture, CT scan, pulmonary function test. sputum showed couple of different fungus, but he said they were common and everywhere and nothing to worry about. So every day I kept thinking tomorrow will be better! I did not know the meaning of the word bronchiectasis ! Got pseudomonas.
I changed PCP & Pulmo practice and have been to pulmonary specialty clinic and a teaching hospital. I now have smart vest, nebulizer, Aerobika and meds for neb. What I would like to know is what stage I am in.
I have not been able to cough in months! Very difficult to get a sputum spec. I very seldom feel air going deep into my lungs. Taking meds now for thrush in my mouth and esophagus. Now I have come to the rude awakening that I am not going to be well tomorrow without a miracle from God.