Bacterial infection question

[MomtoprincesswithCF]

This is my first post.... My daughter is 11 and has CF...... she has been so healthy for the past 8yrs. Then about 2 or so yrs. ago she has had a slow decline in her numbers (still in a very great range) in June we went in for routine check and her numbers had dropped like 20%..... she was admitted and her sputum grew a bacteria call (Mycobacteria Abscesses). This bacteria is found in soil, water, and dust. This bacteria is so hard to get rid of she has been put on an antibiotic treatment for a year or longer until it clears.... She had to start with 2 months of two IV and oral meds then she is on 1 inhaled antibiotic and 3 oral antibiotics.... Having to take so many antibiotics and for such a long time I am worried about it!!!!

Has anyone else had this or had to take so many antibiotics for such a long time???

 

[Gorf]

I am a 48 year old Male with DF508. At this point in my life I am constantly on more than one antibiotic.(Been on up to 4 Pills, and 3 IVs and a pill.) The only thing they watch me for is the side effects of the meds. They also watch me for C Diff. Never have I had it as of yet though. They take stool samples to check for it.
http://www.cdifficile.org/what-is-c-diff-2/

 

[momofcfprincess]

My daughter is 14 years old. Back in 2007 my daughter also cultured Myco Absc. She was started on IV meds and did them until her body started having an allergic reaction to them (about 6 weeks). I would not be worried about taking so many antibiotics. It is important to not let the bacteria cause lung damage, and the only way to fight it is through antibiotics. My daughter has not cultured Myco since 2007, but it was found during a bronchoscopy for a collapsed lung. I always wonder if its lurking within?! I used to worry about my daughter taking so many antibiotics but now wish I wouldn't have been so hesitant to start them, because now my daughters lung function is 52% when well and low 30's when ill. Fight the bacteria and don't let it cause lung damage. Does your daughter culture anything else?

 

[Printer]

Yes, I have and everyone growing MAC has. It is a VERY DIFFICULT TREATMENT and I hated it but the alternative is worse. Don't stand in the way of this treatment!!!!!!

Bill

 

[athletixbc]

I took three antibiotics continually for 8 years. One nebulized, one oral, and one in my sinus rinse. And that was on top of any IV antibiotics I had in the meantime. It's quite common among CFers.

 

[TreasureGoddess]

It's better to hit these things hard immediately and not let the infections get too established. Treating earlier takes much less antibiotics and is easier on the body than waiting until later. This infection is a hard one to treat, but is MUCH better than letting this linger and cause damage to your daughter's lungs. Good luck! You are right to question, especially since this is a whopper of a treatment cycle, but it really is necessary to do.

 

[MomtoprincesswithCF]

Thank you to all, this is the first time we have talked to anyone who has CF. Feels amazing to know we are not the only ones out there dealing with this....

Did all of your MAC go away after treatment or is it like a lifetime thing??

Thanks again : )

Momofcfprincess ( nice name : ) she has cultured psudomonas when she was a baby... And has no longer grew that.... And cultured MRSA only once.

 

[pmae]

You might look into giving her a multidophilus or a high power probiotic to counter the killing off of the good bacteria in her gut and to help keep up her immune system, but the antibiotics are very important for her health and killing off this bacteria in her lungs before it causes too much damage. If you give her a probiotic or multidophilus though keep an eye on her stool. Sometimes they can cause loose bowels. Garden of Life has a good women's probiotic or Progressive Laboratories has a good powdered multidophilus that you mix with a liquid.

 

[momofcfprincess]

Your not alone! There are many of ups and downs with CF! My daughter has never cultured it again since 2007 after we found and treated it. She has been on inhaled antibiotics since then and on numerous oral and IV antibiotics. (I like your name too! Our princesses!)

 

[Printer]

MAC is still with me. Currently dormant and we are not treating it. It is a , if it leaves me alone, I will leave it alone mode.

Bill

 

[Printer]

Thank you Idevoti. All this time I thought that MAC was the same as abscessus. Next you will tell me that Brain Cancer and Breast Cancer are not the same disease.

I really appreciate your help.

Bill

 

[VAmom]

Momtoprincesswithcf, you mentioned that mycobacteria is found in soil, water, and dust. Recently I was provided notice by my state's Department of Environmental Quality that property adjoining mine was being considered for approved use of Class B Biosolids (sanitized sludge). Thankfully a letter from my DS's doctor to the district Department of Health resulted in denial of the request. I was able to keep it out of my backyard, but these biosolids are being dumped all over the US. There are over 12,000 acres of sanitized sludge in my state. Who can say where this stuff ends up; my fear is that it ends up in the lungs of those with CF. Best wishes of good health to your princess.