Newly Cultured NTM/MAC

[CFwarrior86]

I got a call from my CF doctor yesterday. She asked how ive been feeling as ive had a drop in my 02 saturation over the past week or two (from 99% to 92% on 2 Liters of 02). I told her I havent had any fevers and my sputem hasnt been dark green or taste like it does when im having my usual flare up of Psuedomonas or Staph. However im having a hard time breathing and my heart rate has been in the 130s when talking a short walk. she then informed me that my recent sputem culture that was taken a few weeks ago came back and it tested positive for NTM or MAC? She said this could be causing my problems with breathing and mentioned a 12 month treatment of IVs.. Ive never grown this in my sputem, ever.
If anyone has any info for me about NTM please tell me what this means??
im so confused??

 

[ToriMom]

Hi friend,
NTM Is Non-Tuberculosis Mycobacterium. My daughter has this in her cultures too, and it's hard to treat. There are wonderful threads on this forum about it....including one I recently started. Here is one I find very informative:
http://forums.cysticfibrosis.com/sh...V-therapy-for-mycobacteria?highlight=Absessus

In the search engine look for:
Mycobacterium, or MAC or NTM and many great threads will pop up for you. It has made my daughter extremely tired. She is like a different person since this all started. I wish I had a better outlook, but that's our experience.
Michelle

 

[carolinen]

Ntm

So sorry you have had this diagnosis - but at least you now know why you feel so bad, and can start making a plan with your doctors to treat it. The two commonest types of NTM are MAC and abscessus. You will be pleased to know that of the two, MAC is the better one to have.
It's going to involve a long, long treatment with ivs - most of the antibiotics you can take by mouth are not effective against MAC. And you'll be on a combination of several, probably three, to help stop resistance developing.Sometimes it can be cured. Sometimes I'm afraid you are stuck with it - but the symptoms can be made very much better by the treatment.
Don't be surprised if there is quite a delay before you start treatment- they often want to grow the bug and test which antibiotics it's sensitive to. Then it's a case of finding a regime that you can tolerate,as side effects are common. You'll be offered a PICC line or port.

I've lived with abscessus for three years. They have not been able to eradicate it, but I have spells of really good health in between the treatments ( for me, usually about 3 months at a time) Keep in touch as your story evolves

I got a call from my CF doctor yesterday. She asked how ive been feeling as ive had a drop in my 02 saturation over the past week or two (from 99% to 92% on 2 Liters of 02). I told her I havent had any fevers and my sputem hasnt been dark green or taste like it does when im having my usual flare up of Psuedomonas or Staph. However im having a hard time breathing and my heart rate has been in the 130s when talking a short walk. she then informed me that my recent sputem culture that was taken a few weeks ago came back and it tested positive for NTM or MAC? She said this could be causing my problems with breathing and mentioned a 12 month treatment of IVs.. Ive never grown this in my sputem, ever.
If anyone has any info for me about NTM please tell me what this means??
im so confused??

 

[MissAlexsBP]

Hello,

When we shared your post, @CFWarrior86, on our social media account, one of our members writes " My daughter grew Nontuberculous mycobacteria (NTM) when she was about 10 years old and had to be on a strict regimen of inhaled antibiotic (cayston) for over a year and had to be tested for it many times during the course of treatment and then after. Thankfully she never grew it again but her lung function did decline drastically when this bug first appeared ��"