fdixon63 (@fdixon63)

Hi Jennifer @megan123, When I first had Pseudomonas it was only 1+ (mildest). Next sputum was six months later and I had 3 strains at 4+ each (worst). My doctor offered me the choice–try to eradicate it or surpress it? I said eradicate. Had the PICC line with Ciftazidime and Toby. After that treatment, no pseudomonas. Four months after that had tested out for two strains of Pseudomonas (one 4+ and one 3+). Now have 4+ and no treatment recommended. I've gotten many responses to my original post. I've copied them in a document so I can read through them and also refer back later. If I do become symptomatic I'll have some things to bring up to my doctor. Thanks for posting. Take care.

The doctor did not say anything about doing more than the 28 days. That's why I reached out to the group. We all have different doctors and apparently many opinions on how to treat. Thanks to the group. We're all about caring and sharing. God bless.

The positive lab findings come back to show 1+ through 4+. The 4+ is the worse on the scale. First tested 1 plus in March 2019 and was given Levofloxacin. I was not tested again until Sept 2019 and had three different ?strains and all were 4+ so obvious Levofloxacin was not effective. I had a PICC line with Ciftazidime for 2 weeks and Tobramycin for 28 days. Five months later had two ?strains–one 4+ and one 3+. Given Tobramycin for 28 days. Again in March 2020 and again Tobramycin 28 days. Latest sputum results in June 2020 one 4+. Wish we could all get something to work. Urg. Thanks to everyone who is responding–more, more sharing.

Good morning to all. I'm wondering what experiences you've had regarding treatment on recurring Pseudomonas. I had just finished treatment for 3+ Stenotrophomonas Maltophilia and wanted to know if the treatment had gotten rid of it. I did not hear from my pulmonary doc about results of my last sputum–testing had begun on June 19th. Last Friday I went on the portal and this is what I found. FINAL REPORT: 4+ Pseudomonas aeruginosa. This is the 5th Pseudomonas since March 2019. I had a result of
3+ Pseudomonas Aeruginosa in March this year and I was put on Tobramycin for
28 days. Now I show 4+ and have not heard from anyone from the doctor's office. I contacted the doctor by portal to question if treatment was indicated.
I feel OK, no noticeable shortness of breath, am nebulizing 7% Sod. Chl. once a day, appetite not great but OK (basically normal for me). I rarely cough up anything of color after nebing–maybe pale yellow, if at all. Over the last week or so (a few times a day) I have just a very slight dry cough. Otherwise am asymptomatic. The doctor responded "I would say at this point that we should not treat unless something changes clinically. We can discuss more at your next appointment but please let me know if your symptoms change.” Any experiences out there to share?

You're right Sue.
It can be a fine line in dealing with the doctors and if I was not doing as well as I am, it would be much different. The anxiety of waiting on test results is exhausting. I do love my doctor and he took over my care from another pulmonary doc who was failing me so I'm very grateful. I've not given up however till both he and I are satisfied about this matter. We fight on.
Blessings to you and all of us. Faye

Thanks for the input. I fell there are labs capable of doing this testing that I can take it to. Not sure if it's a control thing for liability reason. Maybe they are afraid of being sued–not really sure. I've got a feeling this is not over. When I speak directly with my doc I'll bring it up again. I actually called a LabCorp office 30 mins away to check on their ability to test for AFB, bacteria, etc but no one answered or called back. I'm hoping to get to speak with someone at a couple of labs and then I can discuss it with the doctor. To me it seems what gets the fastest testing done is what we should do. They don't know to start any treatment unless they get test results. Take care.

Morning to all. Wondering who else has had problems with mailing in sputum for testing. I live 3 1/2 hrs from my pulmonary doctor and have been mailing in sputum since August 2019. At first all went well (except for the results) but now it never goes well. When I sent one the end of April I used priority mail express to make sure it got there the next day. I had just finished treatment for Stenotrophomonas Maltiphilia and was anxious to see if I had gotten rid of it. Cost to mail was $26.35. It was delivered 5 days later. The next one was sent priority mail 2 day delivery. It also took 5 days to be delivered. When I checked the doctors office said they were closed to patients because of COVID and the doctors were having to work in the hospital but there is one employee working in the office. Then when they checked the next week they did not have any indication the lab received it. I communicated through portal message about my frustration and the nurse call me yesterday to say she does not understand what happened but if it arrives on the weekend or after hours, they have no control over that. She also said that the test he requests CF and AFB, the sputum would be fine for several days. I asked about having a lab closer to be do the testing but they rejected that idea saying they get results faster in their lab. Sorry to be so wordy but clarification is needed sometimes. Would love to hear your experiences. Faye

Hi Terri. Thanks for the input. I had not heard about the connection with leaves and Pseudomonous. We have trees in our backyard but I rarely go out there and if I do I wear a mask (because of pollen, soil etc.) I had gotten rid of my few house plants last year (kept a small one) because of what we know about potting soil. At this point I'm wondering if the Pseudomonous never gets completely cleared up and when antibiotics are stopped it gains momentum again. I commend you for your dedication to your treatment regimen–since it is working. I wonder how many other doctors keep their patients on that treatment for such a long period of time? When you were first diagnosed with Pseudomonous did you never have a break to see if you cleared it up or was this treatment started from the very beginning? What has this constant antibiotic treatment done to you otherwise? Seems like it would be awfully harsh over time. Thanks again.