Mrsa

[Aboveallislove]

Wow. That's amazing. Xopenex is a bronchialdialtor like albuterol (just doesn't have jittery effects)--luckily family members are mds and our own ped actually gave us a heads up to ask for that! Qvar is a steroid and our son has some "twitching" i.e., asthamatic component potentially. I'll have to read up more on Tobi for prevention. Would you mind sharing the dosing/schedule you used over the years? Also, do you know if it affect GI track bacteria?? I think our first CF doctor had mentioned the netherlands doing that but that they don't b/c of concerns over resistance. Luckily DS hasn't had any infections so he hasn't started the infection-inflammation cycle yet. And we're hoping we can keep it that way until Vertex meds get out next year for ddf508! Thanks so much!

 

[epicurus]

I had MRSA a few years ago but managed to get rid of it after 6 months on oral fusidin/rifampicin.
Now I follow a natural health regime and am healthier than ever.
Good luck & good health

 

[MotherofCFBoy11yrs]

I think my son's MRSA was treated also with rifampicin and fucidin, but only for 3 or 4 weeks because it was caught pretty early. He was too small to swallow pills (I think he was 18 months) so the antibiotics were liquid and he had to take them several times a day. I remember it was very hard to hold him still and squirt the medicine in his mouth. Rifampicin is bright red and it went everywhere! But luckily it was the only serious bug he has cultured. We've since then avoided hospitals the best we can because of the infection risk.Aboveallislove, I think we started with 180 or 240 mg tobramycin a day. The article from the Brussels clinic tells exactly how much they use (I have bought a copy of the article but I don't think it would be legal to distribute it). I don't think inhaled medications have much effect on GI bacteria, not like oral meds anyway. You're very lucky to have MDs in the family!

 

[mamaScarlett]

I wanted to update. I had a checkup 2 weeks into my tuneup, the details of which I mentioned on a previous page. My pfts increased from Fvc 85/fev1 51 up to Fvc 95/ fev1 69. That's with 2 weeks of my current regimen. I also switched from a chest vest to an updated full vest, and improved my technique. The home IV med routine has been tough, but the results speak for themselves!

 

[occupyjapan]

I cultured PA from the time I was 15 until my last culture which was PA free (I realize it's probably still there in biofilm form, but the therapy I'm on - rotating Tobi and Cayston (both with the eFlow), high dose Ibuprofen 2x daily, PharmaNAC 2x daily, 600 mg of Azithromycin every M W F, albutoral (through eFlow) and HTS (through Pari) combined with vest before each dose of antibiotic and a nightly dose of Pulmozyme - has kicked its butt so hard that it's not even detectable now) and have cultured staph my whole life and MRSA since I was 22 or so (29 now).

My symptoms of a MRSA flare up are similar to what my symptoms of a PA flare up were. Chest felt tighter, cough was more productive, some rattling in my chest, just feeling kinda "crappy" in general. Maybe a low grade fever. Oxygen sat was usually fine (I'm usually 97-98% even after exercise). The only real difference, and how I'd know which was the cause, was the color of my mucous. PA made my mucous ever darker shades of green when it was going nuts in there; staph/MRSA made it ever darker shades of yellow.

Right now, I cough up maybe a tablespoon (or two on a "bad" day) of very, very light yellow mucous after I wake up during my morning therapy and then just clear/frothy/white/not infected looking stuff from then on. Maybe one or two little wads of the same very, very light yellow stuff in the evening before bed that built up during the day, but other than that, it's all clear looking. I'm not on any anti-staph drugs (my MRSA is resistant to Azithro); my immune system seems to handle it just fine.

When I have a MRSA flare up, I used to be given 2 weeks worth of doxycycline. It's now resistant to that. The last time I had a flareup, which was when I was still culturing PA, I was given oral Linezolid which worked about 1000x better than doxy ever did. On the rare occasions I'm hospitalized (which has always been for PA-related pneumonia), I'm given IV Vanco for the MRSA and then whatever my PA called for at the time (generally Cefepime and Meropenem).