mycobacterium avium anyone?

Nichole

New member
I'm just wondering if anyone knows more about this than I do. The doctors are speculating as to whether or not I have this bacteria, and they are being extremely vague about it, which scares me. I've been trying to find info on it, and I have found some, but not necessarily from other cfers. I guess it usually requires 3 different antibiotics for up to 18 months, and that is all I know about treatment for it. And that is also in elderly men and women, not 19 year old girls. Thanks,Nichole
 

Lizzie04

New member
Yes, I have had this twice (lucky me!!). It's really not that bad...it does require three different drugs for about 2 years. My only problem with these drugs is that I have a fairly sensitive stomach (at least when it comes to drugs), so it took awhile for my doctors to adjust the dose so that I could actually keep food down and gain weight. But they really worked...I gained a ton of weight back and regained lots of energy. I'm actually on them right now, and I"m working and doing everything I would normally do. If you have any questions, just let me know. My email is emdeardo@yahoo.com and I'm available to talk whenever. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Lizzie04

New member
Just something I wanted to add...I'm twenty-one now, but I was 16 the first time I got this. So yes, it does happen to young girls, sadly!! I felt like a complete alien when they told me that I had this bacteria. So it's nice to know I'm not alone.
 

anonymous

New member
Hello,I think i was 15 when i was told i had that bacteria and was told i would be on a triple combo of anti-bitotics for 6 months, and then they just never stopped them cause the bacteria was always there... I was on them for so long that my body got used to them so they are no good for me anymore and had to be changed to a different "cocktail"... i was just taken off of them this past january and that was cause i had had 4 cultures come back negative for it and stopped it myself and no sign of it returning, the docs do know that i am no longer on it, they wish i was but i don't see a point if i am not growing the bacteria anymore... so yeah it took 3 years to get rid of it in me... It took them a long time to find it though, they said it only usually happens in older people, i was the first they had seen in my clinic with it (that was when i went to children's)... hope this makes ya feel better! Julie18wcf, 3 sisters no CF
 

anonymous

New member
My wife is 49yr C.F. er and she dignosed with this Bacteria 2 years ago. The infectious Diease Dr. put her on several nasty drugs, that would turn her skin orange as well as the bodily functions.With her weight loss, she stopped the drugs on her own, after a couple of months and has had no problem since. Also, her C.F. Dr, and Infectious Diease Dr, had her on so many drugs her nails were softening, and her hair was thinning. She decided to stop all drugs, andlow and behold things are normal now, and her PFT's are in the high 40' or low 50's, which is good for her. She even stopped the airesol's which I don't reccomend to anyone as she does have more tightening and severe coughing spells. Things are fine at this point, and again, she will be 50 this coming November. God has Blessed the both of us, and she's a dedicated Christian Lady.Dkirby@tampabay.rr.com
 
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