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MAC, Pseudomoas Aeuroginosa, Bronchiectasis
Hello,
I am new to this site and group. This is my story:
I had surgery for lung cancer in April 2015. My Upper right lobe was removed and sleeve resection due to main tumor being wrapped around and inside of the bronchi leading to right lung. Within a day after surgery, my middle lobe twisted, I had respiratory failure, and developed pneumonia. I was told I had a couple different infections. I was in the hospital 11 days and was tested for all the super bugs. Test for MAC, which I believe I acquired in the hospital, came back positive. I developed Bronchiectasis shortly after. It caused a large cavity in my middle lobe. In 2015, I was back in the hospital three times with pneumonia and a fourth time due to a rib that fractured and displaced while coughing. I had surgery again March 2017. A graft was taken from my pectoral muscle to close up the cavity in my middle lobe and bring more blood supply to the area. Rather unique that could be done. I’ve been on Rifampin, Clarithomycin, and Ethambutal since August 2015. My sputum tests for MAC have come back negative since October 2015. I was to go off the antibiotics in October 2017 but it was decided I would stay on them longer because I had been ill and tested positive for Psuedomonas Aeruginosa. I was told it is colonized in my lung. November 2017 I had 14 days of IV antibiotic treatments. I had sputum tests and the numbers for the Psuedomonas were much less. So the treatment definitely helped but did not eradicate it. I am better but continue to have green sputum and lots of coughing and wheezing. My ID doctor at OHSU ordered sputum test for bacteria’s and that came back as normal pathogens that live in the mouth but said it could be there is something deeper down in my lung and advised giving it a few weeks and let him know how I’m doing. I emailed him today to let him know green sputum continues and am waiting for his response.
My doctor said that people with MAC and/or Bronchiectasis are at higher risk for contracting Psuedomonas Aeruginosa
I am wondering if anyone here has or has had Psedomonas Aeruginosa and what your experience with it has been?
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Welcome to our group. When you say you have "nuisance" pseudomonas and MAC, does that mean you don't have any symptoms?
Pseudomonas and MAC (Mycobacteria Avium Complex) are two different, difficult to cure lung infections that can hide in susceptible lungs for a very long time. Do you have a lung condition like Bronchiectasis, Asthma or COPD?
You have a wise Infectious Disease doctor, who realizes that it takes a specially experienced pulmonologist to figure out how to manage and/or eliminate both of these rare infections.
Some people need antibiotics, and some do not. But in either case, you need regular monitoring of your situation.
Also, pseudomonas and MAC must be treated separately, with different antibiotics. Usually pseudomonas is treated first because the length of time is less, but it often takes 2-3 tries to eliminate. MAC treatment lasts more than a year, and which drugs to take and how often depend on sensitivity testing of the bacteria in your lungs. In addition, the pulmonologist will have more information for you about how to do airway clearance, possibly using 7% saline nebs, to reduce the bacteria load in your lungs and keep you healthier.
Where did the ID doc refer you?
Hi,
Yes I did have symptons and still do, the pulmonary Dr. said that I had Pseudomonas, and then the last few visits he referred to it as Mac, after he had done another CT scan, he referred me to the Infectuous Disease Dr. she has had me do more of the sputum tests, in she is referring me to the Hospital clinic (Dartmouth Hitchcock in New Hampshire ) to their clinic, I have had cough and congetion for a little over a year now, some days are better than other days.
My appt at the hospital outpatient and this is the Infectious Disease clinic there is at the end of April. I do not have COPD, but I have had asthma in the past I have an inhaler for that when needed. Thank you.
@tamarrillo2 i had it last year as I had a UTI , A lung infection, a sinus infection and a eye infection. A sputum was tested from the lungs and a culture taken from the sinuses . Both showed Pseudomonas . My white count was up . I was put on IV of Zosyn for 14 days ..my white count came down so they took me off . Infectious Disrase Center treating me.
Now this year , last week I went to ENT Dr for update and he took a culture because he said it looked the same as last year . It came back as Pseudomonas now colonized . Ironically, two weeks ago I was bringing up green sputum for a week then it became a grey color so no doubt it’s back in my lung. I’m back under direction of Infection Disease Center for IV treatment again with a follow up with ENT Dr in 28 days for another culture . I’m very motivated to get rid of these infections as my Rheumatologist has identified several
High inflammatory markers in my blood , my bones and my lungs And will treat me with infusions of a biotic of Remicade but NOT until I am free of all infection … the Remicade suprese the immune system so that the infusion can go after the high inflammatory areas so no infection can be in the body otherwise if will spread . So I really need to get this Pseudomonas out of my system so I can start the infusions and I will feel better ! Any recommendations will help knowing right now I’m on IV Zosyn …many thanks !
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1 Reaction@kaybast
Did your Dr not explain that once colonized, the pseudomonas is always going to be there? The IV treatment can knock it back but not get rid of it. I should think that the Remicade would be very risky for someone with Pseudomonas colonized. Hopefully you can explore other options.
@kaybast about the uti. I have had one that has come back 4 times now. Is that somehow connected to having Mac? As I have never had before. But now on my 3rd recurrence of Mac. And seem to only shake the uti for a bit and keeps coming back.
Going for ultra sound on bladder today to check for other possible underlying causes.
@irenea8 thank you for your comments . No the infectious Disease Dr did not specifically say that it would always be there . And you’re correct in that the Rheumatologist will NOT start the Remicade if there is any evidence of the Pseudomonas. He wants a written letter from the Ent Dr that it’s eradicated . The ENT Dr will do another sinus culture at the end of the current IV treatment for determination .
@kaybast
If it is colonized it is still there but it can become dormant to some extent.
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3 Reactions@irenea8 thank you , I think! LOL just kidding !
@westcottkm3040 Hi...I am not familiar with MAC....My UTI along with other infections was a result of my having a bacterial infection called Pseudomonas...This was last year...I had a sinus, eye, lung and UTI....one after another....they all were a result of the above bacteria I named.. cultures was taken from the sinuses, I produced a sputum from the lungs , the UTI showed up in blood work and my cardiologist caught it and my Ophthalmologist treated the eye.
Now two weeks ago the same bacteria shows up in my sinus again...the left maxillary so I am back on IV antibiotics for it..
Peerhaps someone else here in our posts can speak to the MAC for you... Kay Bastasini
Thanks for the info