Mycobacterium Avium Complex (MAC)

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paulaleigh

New member
My daughter has CF and had MAC two years ago, which resulted in 12 months of antibiotic treatment. She was very sick from all the medicine and so forth. We were told a few weeks ago that she has it again! Has any other CF patient out there had this bacteria? If so how did things go for you? What was your treatment?
Thank you,
Mother of 18y/o w CF
 
P

paulaleigh

New member
My daughter has CF and had MAC two years ago, which resulted in 12 months of antibiotic treatment. She was very sick from all the medicine and so forth. We were told a few weeks ago that she has it again! Has any other CF patient out there had this bacteria? If so how did things go for you? What was your treatment?
Thank you,
Mother of 18y/o w CF
 
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JennifersHope

New member
I am six months into treatment for NTM.... It is a night mare... The antibiotics are ruining my hearing.... I just had to stop last week and we are waiting to see what to do... I would consult National Jewish Hospital in Denver Colorado. I am astounded at how amazing they are.

They are top in the nation for NTM and they can give you insight. I was so so sick before I started treatment because the old center I went to did not do a sputum culture on me in two years.. so by the time I switched centers and complained of the same symptoms, night sweats, low grade fevers etc, I tested positive ... I had to test positive several times which I did and I just had a bronch and it is still there....

I know sometimes they don't treat it if you are not having really troublesome treatments because as you well know the treatment is awful

I would for sure if you could go to National Jewish.....

best of luck
 
J

JennifersHope

New member
I am six months into treatment for NTM.... It is a night mare... The antibiotics are ruining my hearing.... I just had to stop last week and we are waiting to see what to do... I would consult National Jewish Hospital in Denver Colorado. I am astounded at how amazing they are.

They are top in the nation for NTM and they can give you insight. I was so so sick before I started treatment because the old center I went to did not do a sputum culture on me in two years.. so by the time I switched centers and complained of the same symptoms, night sweats, low grade fevers etc, I tested positive ... I had to test positive several times which I did and I just had a bronch and it is still there....

I know sometimes they don't treat it if you are not having really troublesome treatments because as you well know the treatment is awful

I would for sure if you could go to National Jewish.....

best of luck
 
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paulaleigh

New member
Thank you for your reply. I hope things get better for you. I will look yp th National Jewish Hospial in Denver. Hang in there.


Paula, mother of 18 yr old with cf
 
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paulaleigh

New member
Thank you for your reply. I hope things get better for you. I will look yp th National Jewish Hospial in Denver. Hang in there.


Paula, mother of 18 yr old with cf
 
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piddly

New member
My daughter is being treated for MAC too. How are you now? Did you get better with treatment or are you still doing treatments?
 
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piddly

New member
How are you doing with the MAC? Have you been able to eradicate it? I sure hope you are doing well!!!
 
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