Chronic staph problems

4hats

New member
Staph continuously gives me problems. I culture it every time I give a sample. I also culture MAC (being treated for it the last 9 months; have not cultured it since I started treatment) and HI. I frequently battle infections. Sputum green all the time. I take oral antibiotics (I've taken a bunch of different ones I am sensitive for: augmentin, doxy, dicloxacillin, etc...). They all have the same effect. They tone things down for a bit while I'm on them and as soon as I finish a course I go right back to being green, often times streaking, sometimes moderate hemoptysis. I also have bronchiectasis in 4 of my 5 lobes. So my questions are: is the bronchiectasis just gonna keep me chronically infected? Do any of you take anything stronger to treat staph, other than orals? I'm very diligent with my treatments, meds and exercising. It is very frustrating to always being infected. I would appreciate any input, experiences, suggestions. Thanks.
 

RockyLass

New member
Hi! I am getting the same da**m problem this year, all started in March 2014. On-off oral antibiotics for few months, I had MAC, like you went away after year of treatment, and was doing great for long while. Then started, I was getting low grade fevers and streaking and horrible GREEN GREEN, it just won't calm down. Its only plain sensitive staph! No MAC has been cultured, decided to do a hospital clean out for 2 weeks, now I am IV's on my 3rd week at home and really I am still not %100 and thinking ill be another week. I think my body is just annoyed with it, I hope I go back to my baseline very soon with no antibiotics... (PRAYING)
 
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windex125

Guest
I have both those issues for years now and the bronchiectasis was diagnosed back in 76 it has caused the right lung to collapse it does not even show up on the xray anymore. MAC diagnosed in 90 I also had army green for a few yrs. but being the rubber band I am, with IV's and orals over the years my color now is more beige/brown I have not seen green in a long time. A few years back bled for almost 6 wks had to give myself shots of vitamin K and that passed as well. Now all of a sudden after being PS my whole life had first attack in May 2 weeks in hosp. now using Creon. CF the disease that keeps on giving. Pat-59
 
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monds1234

Guest
i have the same problem with staph here on ivy's for 4 week and dicloxacillin for 3 weeks at the moment. since april 2013 been on ivy and antibiotics pretty much every 4-5 weeks.my last flare up i was on ivy's for 3 weeks got sick within 3-4 days and back on ivy's for a month within a week. usually within a week i start coughing alot having fever.fatigue,joint pain. i am also hopping it will come back to somewhat normal sooner or later.right now it seems to just be fine when on antibiotics and as soon as im off it just comes right back. i am glad i am not the only one with this problem i thought it was just me.
 

RockyLass

New member
View attachment 440 I thought I was the only one too til I saw 4hats and now others... can you guys tell me what your PFTS are and how much it drops it when you flare up? Mine dropped 68% in the hospital, but bounced back up to my base line.

I posted a gross ( sorry:eek::eek:) educational picture.... of what s** t staph looks like, it smelt bad and was horrible and grew after only 5 days off the antibiotic! . I guess it sat in my lungs for a while....I am coming off my antibiotics tomorrow and will leave the picc in for a week, I hope it goes away for a while, if not I will be getting a port soon. Only 5 days to grow and 3 weeks to clean it up from my lungs.. I notice stress makes it grow faster and lack of sleep. Also the doc doesn't like to use IVs to much on me, because he said it can possibly encourage PA to grow because the staph suppresses PA .....
 

2005CFmom

Super Moderator
My daughter struggled with staph. Her doctor had her neb vancomycin 2 times a day, month on month off. She did this for a couple years and we just stopped this treatment earlier this year since she seems to have it under control now. This is off label use of the injectable vancomycin and I don't think it is widely used. We were told that we were the only ones at our clinic doing this. But it may be worth asking your doctor about.
 
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monds1234

Guest
rockylass my pft are pretty low to begin with im at 28% right now but about a year ago when i was in the mid 30s when i got sick from staph it dropped to 16% where i got hospitalized instantly and put on oxygen and ivys.
 

4hats

New member
My last PFT was 87. I got diagnosed 2 1/2 years ago after spewing green gunk for about a decade or so. When I first was diagnosed my PFT was 74. I got it as high as 91. These high numbers were after I treated or was treating MAC. I stopped that treatment 2 months ago. I work hard with my running and this really helps me keep my numbers as high as possible and it clears my lungs effectively. However, the green does not go away. Your picture looks very familiar!

View attachment 440 I thought I was the only one too til I saw 4hats and now others... can you guys tell me what your PFTS are and how much it drops it when you flare up? Mine dropped 68% in the hospital, but bounced back up to my base line.

I posted a gross ( sorry:eek::eek:) educational picture.... of what s** t staph looks like, it smelt bad and was horrible and grew after only 5 days off the antibiotic! . I guess it sat in my lungs for a while....I am coming off my antibiotics tomorrow and will leave the picc in for a week, I hope it goes away for a while, if not I will be getting a port soon. Only 5 days to grow and 3 weeks to clean it up from my lungs.. I notice stress makes it grow faster and lack of sleep. Also the doc doesn't like to use IVs to much on me, because he said it can possibly encourage PA to grow because the staph suppresses PA .....
 
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windex125

Guest
My pfts run high 40's sometimes go to 51? I wld like to make a comment to 2005CFMom be careful with those mincin drugs, I did the same with Tobermicin inhaling it in the 90's before it was approved for inhalation and now I am wearing hearing aids I switched off between the tobi and gentamicin had no idea I was losing my hearing until I started answering questions with a answer that made no sense at all. A lot of times everything comes with a ???? to do or not at the time it helped me but I was not aware it was only to be used as a IV drug. Also Rocky getting a port was the best thing I ever did I was so scared of it at the time and now it has been in for over 10yrs and I count it as a blessing as it makes my quality of life easier and my picc lines kept giving me high fevers after a week or 2. Pat-59
 
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