Bronchiectasis: New Diagnosis

Thank you for all the information of what you were going through. This is exactly every symptom I currently have. What antibiotics got rid of the pseudomonas? My culture was at +3 and now at +4 and am currently on gentomycin. Appreciate you sharing.
Joann

Hi Terri,
Thank you for sharing your experiences. Sometimes I feel I’m at the end but I’m not ready to stop working I still have plenty of years to go but just getting into the shower is an effort. I have tried postural drainage which I have not noticed a changed yet but maybe because my pseudomonas is back so I’m back on the gentomycin and albuteral in the nebulizer, I still take mucinex 2 tabs of mucinex twice daily, along with advair and all my other meds. I’m going to have my partner try doing the clapping this weekend to see if that gives some relief. Where do I get this from?
The dr told me it’s everywhere in water soil etc and I’m more susceptible that people without health issues. Sounds like you are telling me certain geographical areas have a higher risk.

Hello Terri, Speaking of susceptibility tests. I was first diagnosed with MAC in Sept 2019 from a bronchoscopy culture performed at the same hospital. I was surprised that a susceptibility test was not done, but I started the big 3 anyway. This past May another culture (sputum sample) was sent to Quest laboratories and I insisted that susceptibility testing be done at the same time and my Dr said he would order that. 8 weeks later my culture is still positive for MAC and M. abscessus as well, but the susceptibility test was never done. He then started me on Arikayce. I am seeing an Infectious disease doctor in 2 days and I want to get another culture sent to NJH this time to include a susceptibility test. I checked the NJH website and they have a total of 11 different varieties of susceptibility tests for NTMs.

@poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your dr is taking a stab in the dark and randomly throwing antibiotics at you. That is just wrong! It should not a 'One Size Fits All' treatment plan. Some species (now over 150 varieties) of mac are resistant to various antibiotics. @joann, this is good for you to know as well. I would INSIST on a suseptibilty test and insist on you having a hard copy of that and the sputem results in your hands. It is good to keep a file of those lab tests. You would be surprised how they come in handy for future reference.

Terri , I was not happy about the way my case was handled by my Pulmonologist. The best thing he did for me was a referral to Dr Fiske , an ID doctor at Vanderbilt. I just saw her her Thursday and was very impressed with her knowledge of MAC/Bronchiectasis. I gave another sputum sample for culture AND susceptibility testing. She routinely sends all her cultures to National Jewish Health. (this also impressed me). She also started me back on Azithromycin and Ethambutol daily along with the Arikayce I have been taking. So now the long wait to get results back from the lab. So if anyone reading this is wondering whether or not to get an ID doc, wonder no more, he/she will be much more likely to be up to date on MAC/Bronchiectasis.

Hi Joann. I was put on inhaled tobramycin. It knocked the pseudomonas right out in a month's time. Mind you, this med does not work for everyone. Do you have your suseptability test results? Do you know what those are?

@poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your dr is taking a stab in the dark and randomly throwing antibiotics at you. That is just wrong! It should not a 'One Size Fits All' treatment plan. Some species (now over 150 varieties) of mac are resistant to various antibiotics. @joann, this is good for you to know as well. I would INSIST on a suseptibilty test and insist on you having a hard copy of that and the sputem results in your hands. It is good to keep a file of those lab tests. You would be surprised how they come in handy for future reference.

It is a joy to tell you something about me that has such good memories, and was a positive experience in my life. A mustang officer is a person who joined the Navy as an enlisted person, and who received their college degree through the Navy became a commissioned officer. Hard work, but worth it. I was selected for a program called the Navy Enlisted Scientific Education Program. They sent me to Purdue University. BTW, you know Chief Petty Officers are widely respected. They have come up through the ranks to the higher enlisted grades. I'm proud of his service, too.

That is right Joann, some geographical areas are 'hot spots' for MAC. May I ask what state you live in?