Staph problems

4

4hats

New member
I was wondering if I could ask for some help from fellow CFers that suffer from staph. Basically, these past 8 months I have been having quite a bit of problems with it (I also culture MAC, and haemophilous Influenzae. Both intermittently. The Staph has cultured every single time I give a sample). They have not treated the MAC because they feel it is not giving me problems, and is not abundant in me. It does not appear on the initial smear, but at times grows over the 6-8 week time period after the sputum sample is taken.
I go thru the same cycle every time. When I am antibiotics, I do relatively well. They have given me doxycycline, dicloxacillin, Cipro in the past, etc...Doxy is a two week course. Dicloxacillin was last given to me for a month (dicloxacillin was the least effective). A few days after I finish my course of abx, I revert to a lot of green sputum that is sometimes accompanied with some streaking,fevers, and lack of energy. Fevers can be from 99.5 to 101.5 or so. I had a bronchoscopy done last month because a CT scan showed the lingula in my left lung could be collapsing. They wanted to take a peek to see how things looked in there. They cleaned things out and took some sputum samples. That left part of my lung is definitely a weak spot and does not drain well. When not on abx, i have a decent amount of pain there.
They are trying to get me on some form of month on,month off abx treatment, but I am not making it more than a few days into my "off " month without being symptomatic as I noted above.
I wanted to know, does anyone else experience this cycle with purely staph? If so, what abx preventive plan do you have? What is working for you? Any suggestions and your experiences would be welcome. Thanks.
 
J

JustDucky

New member
I grow staph as well as PA, steno and occasionally B. cep (thankfully it's been awhile since that one has graced the petri dishes). Staph seems to grow with every culture and when it flares up, it sounds just like yourself....streaking to frank blood in my sputum, fevers, etc. I also start to revert back to the same old sputum within a few days to about a week of stopping my IV's. As far as prophylactic abx for the staph, I am not on anything....I do take colistin every day for my PA/steno though. I guess my doc doesn't really want to put me on antibiotics for the staph unless it is causing problems.

Jenn 41 wCF
 
2

2005CFmom

Super Moderator
My daughter struggles with staph (not MRSA). Last year she started month on, month off of inhaled vancomycin as maintenance. (It is the injectable form of vanco that we mix at home then administer via neb.) From what I understand it is not commonly used, but may be worth talking to your doctor about.
 
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SoyaSauce

New member
I would definitely start looking into treating that MAC NOW, I like you, have always culture STAPH for years, with usually geting every 6-8 months 'staph flare ups", they would just result in more green/yellow mucus like you WITHOUT fevers, I would feel fine, just very junky crap. I call and get an antibiotic for 2 weeks, increase CPT, and then everything would settle back to baseline and feel better.

However, these "weird " cycles started EXACTLY the same as you when the MAC was slowly growing. I began getting random low grade fevers daytime/nightime and 'so-so" green smelly mucus production, and soon getting night time sweats, BUT NOT FULL blown soaking wet. I would call, take an oral ABX and be fine, FEVERS GONE ! HELLO!? Then for a few days after finishing it, needing another course, as these attacks would creep back in only 5 days!

The MAC had been detected in my sputum about 6 months before the symptom cycles started, but my Drs were on alert ready to treat when it was time. After 2-3 rounds of oral ABX with these fever cycles, Thats was when I was given the green light to treat it.

To keep giving you antibiotics to cover the staph when the symptoms keep coming after your done in only a few days time warrants intervention as something is giving you a problems, ESP. since you have a comfirmed POSTIVE.

Most CFers live in "peace" with staph, as it becomes your normal everyday 'CF flora' that you have been living with. Its only when it grows out of control it causes problems.

Hope that helps, Ya can send me a PM, I have been doing treatment for MAC for 12 months now- another 2 months to go and I am DONE ! :D:D
 
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scarecrow

New member
I have cultured staph for the last 50 years now. You all seem much more fluent in medical speak than I am but I will try to tell what my situation is like. The only thing is that we all start off different and as time goes by different courses of treatment make us even more unique, so what "works" for me is probably not for everyone.

I have cultured staph that is now called Pseudomonas since I was diagnosed. Ocasionally other things flare up and have to be dealt w/ but as one person said the daily phlem and coughing has become "normal" for me.

From the start I was told that using antibiotics was a last resort and I have probably carried it to extremes but it works for me. I take Azythromecin regularly because you don't build up a resistance to that. Other antibiotics have both long term and short term side effects that may be better than dieing but maybe not much better.

I can't tell anyone else to follow in my footsteps but think about what antibiotics are doing to you and if there might be some other ways to deal w/ the bugs that you have.
 
4

4hats

New member
SoyaSauce, as it turns out they are going to start treating me for MAC. They talked to the experts in Denver and it was felt that it was time to treat the MAC. Thanks everyone for your help.
 
S

SoyaSauce

New member
Good luck, I sent you a PM, The treatment is hard, but you will feel better, I have been doing it for 13 months therapy, and this is my last month 14 total months of ALOT of pills, I will be glad to FINALLY take a break and the side effects. :)
 
M

Matt31

Guest
What is the abx? Im growing the pseudomonas alot lately. I was just in a couple weeks ago. Now im gonna have to go back in. My docs here are not very educated very good here. I use to only go in 1 or twice a year. But this past eight months has been like a switch was hit. Im alot shorter on breath in alot of pain. Other than that i feel fine. Just cant breathe.
 
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sweetninis

New member
SCARE CROW:You said u take azithromycine daily because you do not get resistance from it!Is this true ?If anyone else know something about azithromycin and resistance build up please tell me!
 
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