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ncgirl
@ncgirl

Posts: 9
Joined: Aug 23, 2017

What's your organism? Has anyone had M fortuitum or chelonae?

Posted by @ncgirl, Sep 10, 2017

Hello all, I’ve been reading away and am so grateful to be a part of such a great group. I have been to 2 university clinics, first UNC and now Duke as a second opinion. 18 mos ago I was told I had M. Fortuitum which is a different tx than big 3, and Duke told me MAC and put me on the big 3. Following guidance from the group I looked closely at my last cultures and they show MAC:”presumptive M chelonae”. Is anyone familiar w/ their organism labeled presumptive? It’s close to the M fortuitum… ive been seeing a respected pulmonologist but have a second opinion w infectious disease tomorrow. Looking forward to the info but Leary – he’s supposed to be the state expert & poo poo’d my initial
Diagnosis. It doesn’t affect everyone but i was so tired I had trouble gettting up in the am, needed naps all the time. I’ve improved on big 3 but feel I’ve plateaued and am worried the abtibx combo is a little off re: getting the umbrella tx instead of for specific MAC organism. Am I making sense? While so helpful, knowing this small detail & motivation to be better I’ve been pretty anxious.
Thx!
English

REPLY

Ncgirl…what a path you have been on !!!
Are the facilities you have been to on the site NTM info.org? Namely do the Drs you see have experience with a minimum of 12 NTM clients per year? Tdrell

Tdrell, that is a good question. I have assumed that because my infectious disease guy is known in the community as the state “expert” and being in a high MAC area that the answer was yes but I’ve never asked – I will tomorrow, thank you! I’ve been so chronically ill for the last 3.5 years I am tired of playing around – I wish I’d been even less patient:)

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@ncgirl

Tdrell, that is a good question. I have assumed that because my infectious disease guy is known in the community as the state “expert” and being in a high MAC area that the answer was yes but I’ve never asked – I will tomorrow, thank you! I’ve been so chronically ill for the last 3.5 years I am tired of playing around – I wish I’d been even less patient:)

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Ncgirl….one of the “top” NTM places is National Jewish Health in Denver….the will be having their annual workshop for patients with NTM…they will be videoing it and posting after October 21st…the past two years are also videos and posted on you tube.
Several of our members attended an NTM workshop in Washington this past spring…also videod… could someone list the sites? Tdrell

@ncgirl

Tdrell, that is a good question. I have assumed that because my infectious disease guy is known in the community as the state “expert” and being in a high MAC area that the answer was yes but I’ve never asked – I will tomorrow, thank you! I’ve been so chronically ill for the last 3.5 years I am tired of playing around – I wish I’d been even less patient:)

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Hello English. What did your I.D. have to say?

@winwindwalker you are so kind to ask! Well, he said I’m “interesting, and you never want to be interesting to a doctor”. My cultures in fact grew MAC. He added I did grow a few colonies of M. Chelonae but not much and that my + cultures the year before for M fortuitum were likely a fluke, despite that those cultures were what got me on this path. He requested repeat cultures to check for other organisms and to add alone nebs. He also suggested cutting my azithromycin dose in 1/2 from the 500 my pulmonologist put me on (a dose backed up by a study out of Korea a few years ago – because rifampin metabolizes so many drugs more rapidly inc. clarithromycin), he feels strongly there is. I good evidence that rifampin metabolizes azithromycin. So maybe that will help energy? Looking forward to seeing if saline helps cough production. He doesn’t think the big 3 are a reason not to have a baby which was a big deal for me – I was really afraid of that possibility being taken away. He is in communication w MDs at National Jewish so…. basically wait and see and keep on keeping on for now.
How are you & how did you fare during Irma?

@ncgirl We escaped ‘Irma’ thank goodness! I did evacuate to Virginia and had a nice visit with my daughter. I am a confused about your doctor cutting your azithromycin down to half. If the rifampin metabulizes that med; it seems that lowering the dose would enable the rifampin to really take it down….. As for having a baby, would it be possible to hold off on conceiving until after your treatment is done? I just don’t trust such strong meds, especially the rifampin going into a developing fetus. That’s just me…. There are so many schools of thought on treating this disease. I really wish the medical profession could have a ‘Gold Standard’ for treatment.; and they will some day when they know more about it. The best doctors at NJH like to put even the mildly infected people on the BIG 3 antibiotics, whereas the best doctors at Mayo disagree with that. I was SEVERELY infected and did not get put on the BIG 3; only one type of antibiotic per month. That worked for me. I guess that we must also understand that that our bodies are all different as well. Perhaps my course of treatment was what was best for me. Please keep us posted on your progress. I pray that your cultures come back clear. – Terri

@ncgirl , Hello English, are you still visiting our forum? I am wondering if you got a solid treatment plan going? I hope the I.D. you were planning to see had some good insight for you. How are you doing now?

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