Knocking down pseudomonas w/o antibiotics

@irenea8 Can you offer some insights here?

I should clarify here that I just called the NJH lab and they said my pseudomonas is "smooth" not "mucoid" since the report didn't specify mucoid.

Nothing really to do but Saline 7%, Aerobika, Airway clearance techniques, use NAC if it helps. Exercise if you can. Most people with Pseudo end up having exacerbations and need antibiotics. Your choices are Cipro and Levo oral (I agree with your hesitancy), IV antibiotic treatments, inhaled antibiotic ongoing or Azithromycin ongoing. Brinsupri if you tolerate it.
Rare means you do not have much so that is good! Not having mucoid is also good! But get treatment if you ever need it. Mine is both mucoid and many so about as bad as it gets. IV treatments have been the only thing I can do when things get critical.

@irenea8
Irene, could you please comment on my separate post regarding Cipro...I didn't realise it was such a horror and started it yesterday...now I am quite afraid. Do you always have coloured sputum if you have pseudomonas? Unfortunately I started it without sputums done, coming straight off Augmentin. It seems now to have been a foolish thing to start without waiting to get sputum testing. My Dr was insistent that I needed it, in case it was pseudomonas but my sputum is generally white - a slight bit of yellow a few days back. He wants me on it for a month or until I have a week without symptoms. But what if it isnt going to work and I risk severe side effects without improvement?

@narelled23
Hello. I sure do not know about your situation or why you were on the Augmentin to begin with. Were you sick, having an exacerbation? Then your Pulmo tried it but you did not get better? If your sputum is white with a slight bit of yellow it sure does not sound like you are very sick. But who knows. My own experience is relevant perhaps. I had a flare and was put on Augmentin (which had cleared up the previous flare). But the second time it did not help. So I suggested to my pulmo that I might have Pseudomonas. He ran a special CF Test and it came up positive for Pseudomonas. I have never tried Cipro but it does treat Pseudomonas so your Dr must be thinking to just try it and see rather than run the sputum test first. 8 weeks on that would be a very aggressive treatment. You may do just fine on it and you may not. But if it were me, I would insist on the sputum test to verify the need to take it. 8 weeks is a very long time to be on it.

@irenea8
Thank you. May I ask is a special CF test a test for Cystic fibrosis? If so how would that be able to detect Pseudomonas?

I guess he was hoping that I wouldn't need the 8 weeks. It was meant to be a month but I noticed he had a repeat on the script!

Unfortunately I have been on antibiotics for over a month so no opportunity to take a sputum...although I submitted one today regardless.

@letsjustbreathe Hi. I will just piggyback on @irenea8's comment, although I also use a vest and take Brinsupri. Colonized pseudomonas requires vigilance. Two things reduced how frequently I've had pneumonia: a successful course of the Big 3 for MAC for 16 months and starting Brinsupri last March. Clearing the MAC has given the Brinsupri room to do its work, and I have noticed the improvement.

My NJH doctor would like me to do 14 days of 24-hour IV Zosyn to "tamp down" the pseudo, but since my count is already Rare (at +1), my local pulmonologist has recommended putting that off until when - or if - I have another exacerbation. This is a tough decision!

Are you being treated for the cavitary MAC? Does that pose a greater threat to your health than the pseudo? Please don't hesitate to get treatment when necessary, even if it involves antibiotics. The cumulative damage to your lungs can prove insurmountable. Best of luck with your decisions.

@narelled23
Sorry it is not a test for CF but rather a test they do if you are a CF patient since pseudomonas is very common in CF. My Pulmo's lab has a test by that name but basically you just want to test for pseudomonas. They might not call it that at another lab. By the time you are able to see a pulmo you would probably ok to give a sputum sample? Even 4 weeks is a very long time on Cipro if you do not know what you have.

@tcd518
When and if you do the Zosyn 24 hour drip for 14 days, I would love to hear how it went for you. And what side effects etc. You could even private message me. But hopefully you do not need it yet.

@letsjustbreathe - I have MAC, Bronchiectasis and colonized Pseudomonas. My Mayo Clinic pulmonologist has kept me on inhaled Colistimethate twice daily after airway clearance with 7% sodium chloride. Even though it is an antibiotic, the inhaled method has given me no side effects and has kept my pseudomonas under control. I wish you good luck as you journey through this disease.