Should my pseudomonas be treated?

Posted by rits @rits, Jan 4 3:45pm

Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,

I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova – sorry couldn't resist Thumper's influence).

Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,

Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.

I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks

@rits…I noticed you haven't gotten the replies you are seeking. It is frustrating. Your doctor sounds like an excellent source for appropriate medicines. Those of us who have constant mucous and are denied antibiotics for good reasons (candida, side effects, etc) have had to turn to alternatives such as postural drainage (see youtube videos), lung cleanse (see amazon), mucinex, and change in diet (acid reduction). You can take control over what you do every day. This will help you feel less helpless. I hope you find your answers.

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@egayle187

@rits…I noticed you haven't gotten the replies you are seeking. It is frustrating. Your doctor sounds like an excellent source for appropriate medicines. Those of us who have constant mucous and are denied antibiotics for good reasons (candida, side effects, etc) have had to turn to alternatives such as postural drainage (see youtube videos), lung cleanse (see amazon), mucinex, and change in diet (acid reduction). You can take control over what you do every day. This will help you feel less helpless. I hope you find your answers.

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Thanks egayle. I have been doing some form of sputum treatment and airway clearance for 10 years. I'm sick of it but I know I need to do it. While I have always had a great deal of sputum, it has been manageable and I currently have no problem bringing up sputum. Actually, it's the opposite. It comes up all day long, only stopping if I sit or lie down. Because I've never had anywhere near this much or so many thick globs, I think it is from the pseudomonas because excess, thick unmanageable sputum is the first symptom listed..

Sue and I think one or two other members responded to a previous message I posted which was moved to a different group. I plan to ask to be put on an antibiotic for it. I guess I'm hoping someone who hsd been treated for it will say. "Go for it." or "No
Don't do it."

Thanks for reading and responding.

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@egayle187

@rits…I noticed you haven't gotten the replies you are seeking. It is frustrating. Your doctor sounds like an excellent source for appropriate medicines. Those of us who have constant mucous and are denied antibiotics for good reasons (candida, side effects, etc) have had to turn to alternatives such as postural drainage (see youtube videos), lung cleanse (see amazon), mucinex, and change in diet (acid reduction). You can take control over what you do every day. This will help you feel less helpless. I hope you find your answers.

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Which lung cleanse from Amazon do you use? Thank you
Ellen

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@rits

Thanks egayle. I have been doing some form of sputum treatment and airway clearance for 10 years. I'm sick of it but I know I need to do it. While I have always had a great deal of sputum, it has been manageable and I currently have no problem bringing up sputum. Actually, it's the opposite. It comes up all day long, only stopping if I sit or lie down. Because I've never had anywhere near this much or so many thick globs, I think it is from the pseudomonas because excess, thick unmanageable sputum is the first symptom listed..

Sue and I think one or two other members responded to a previous message I posted which was moved to a different group. I plan to ask to be put on an antibiotic for it. I guess I'm hoping someone who hsd been treated for it will say. "Go for it." or "No
Don't do it."

Thanks for reading and responding.

Jump to this post

rits…. I don't know if this will be helpful but I've had pseudomonas consistently for a few years. Could not tolerate the toby and there seemed to be nothing else. A pulmonologist in Tulsa put me on azithromicin 3 times weekly and surprisingly, the phlegm production (which was always heavy and green) has decreased at least 90%. I've been on this for about six months. Mayo pulmonologist would rather I not take it because it may be needed for MAC at some point. But I just keep hanging on. It's absolutely wonderful to not be coughing and producing green stuff all day long. I do saline, albuterol, buesomide (sp) performist, and yupalri through the nebulizer daily. Takes at least 90 minutes to do that and like you — I hate it….. but this program (for the time being) has virtually stopped the coughing and production and it's the best I've felt in years. Just saying…….. (of course it can change at any time).

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@ellenn

Which lung cleanse from Amazon do you use? Thank you
Ellen

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@ellenn…I have used Dr. Tobias for years with good results. Recently my HVAC serviceman suggested there might be mold in ducts, so I used the lung cleanse for smokers for one month just in case. I'm doing well right now, but if another exacerbation comes along, I may add the toxin remover cleanse again.

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@auntnanny

rits…. I don't know if this will be helpful but I've had pseudomonas consistently for a few years. Could not tolerate the toby and there seemed to be nothing else. A pulmonologist in Tulsa put me on azithromicin 3 times weekly and surprisingly, the phlegm production (which was always heavy and green) has decreased at least 90%. I've been on this for about six months. Mayo pulmonologist would rather I not take it because it may be needed for MAC at some point. But I just keep hanging on. It's absolutely wonderful to not be coughing and producing green stuff all day long. I do saline, albuterol, buesomide (sp) performist, and yupalri through the nebulizer daily. Takes at least 90 minutes to do that and like you — I hate it….. but this program (for the time being) has virtually stopped the coughing and production and it's the best I've felt in years. Just saying…….. (of course it can change at any time).

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Thanks aunt nanny. I'm glad that you found treatment that works for you. A problem is that azithromycin should not be taken alone because it is one of the best drugs for MAC and mycobacteria become resistant to it. Also, it causes digestive problems in some people. I will definitely discuss your treatment with Dr McShane.

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@rits

Thanks egayle. I have been doing some form of sputum treatment and airway clearance for 10 years. I'm sick of it but I know I need to do it. While I have always had a great deal of sputum, it has been manageable and I currently have no problem bringing up sputum. Actually, it's the opposite. It comes up all day long, only stopping if I sit or lie down. Because I've never had anywhere near this much or so many thick globs, I think it is from the pseudomonas because excess, thick unmanageable sputum is the first symptom listed..

Sue and I think one or two other members responded to a previous message I posted which was moved to a different group. I plan to ask to be put on an antibiotic for it. I guess I'm hoping someone who hsd been treated for it will say. "Go for it." or "No
Don't do it."

Thanks for reading and responding.

Jump to this post

@rits – This is a tough question.

I know when I had pseudomonas, the sputum production was copious – worse than any other pneumonia I ever had. Mine was treated with levaquin, azithromycin, something else, and finally inhaled Tobramycin to kick it. Then I spent over 1 1/2 years on the Big 3, and it hasn't been back. We were at the doc this AM and I told him my lungs felt "juicy" but he said they sounded ok. I admit I haven't nebbed yet today, so I'll do it after lunch.

But based on how you are feeling, it is probably time for you "bite the bullet" and go for a CT scan. We have had good luck going to the local imaging center instead of the hospital – their precautions were superb. Seeing how your lungs look will help your doc make the best decision!
Sue

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CT scans are super quick. I have had to have several since Covid, and I schedule them to be first appointment in morning. I do not feel nearly as exposed as most places.

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@rits I just found this article on Phage therapy for Pseudomonas from Cystic Fibrosis News today. Unfortunately not something available today but maybe in the near future. Not an antibiotic, YEAH!!!!. https://cysticfibrosisnewstoday.com/2021/01/12/phase-1-2-trial-at-yale-testing-phage-therapy-chronic-p-aeruginosa-infections-in-cf/ Phage therapy is also being tested for treatment of Mycobacterial infections. https://www.genengnews.com/insights/phage-therapy-win-mycobacterium-infection-halted/

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Hi Rits… I too have pseudomonas that is colonized..I would ask the dr to give you Ciprofloxacin for 2 weeks, to try and get rid of it..it sounds like you are also have symptoms.. I get sputum turning green tightness in my chest, and trouble breathing..doing nothing isn’t how I would be dealing with it..Cipro and levaquin are first meds given for 2 weeks.. if it has shown in your sputum 3 times, as well as symptoms it should b3 tim3 to try Cipro for starters

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Hi Rita. I am no physician as you well know, but it appears to me that you are not being left on the antibiotic long enough to truly stamp out the pseudomonas. I was put on tobramycin in 2016 to treat mine. I felt better and all coughing ceased after one month on it, but my dr at Mayo would not take me off off it until the spring of 2020. Remember, the reason you are suseptible to pseudomonas doesn't go away with medication. We have damaged lungs and will forever be fighting against opportunistic pathegens. I had been on both cipro and tobramycin for four yrs to get it good and gone.

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Hi all, what Aerobika device should I buy

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