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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.
Thank you for your time in advance,
English
Replies to "Hello all, I am new to the community. I am in NC and diagnosed with MAC..."
@ncgirl
Hi English, Welcome. I haven't heard or read anything about getting it on the skin! I was diagnosed with MAI in Dec 2016. I was also diagnosed with bronchiectasis. I haven't been put on any antibiotics yet and don't really have any symptoms, except nodules that show up on my CT scans. I see my specialist in October. I'll see then if anything changes. I use the Aerobika but I don't think it seems to do much. I hardly cough up anything at all. You'll find everyone on here very helpful. It's a great place to ask questions and voice fears and concerns with people going through the same thing. Let us know hiw the acupuncture goes.
Good luck
Gina K
@ncgirl Hello ncgirl! Welcome to our forum. You've come to the right place to help you deal with this beast. I noticed you signed off as 'English", is that your name, first, last? First names are more personal. I am very glad that you took the time to read through past posts. You can learn a lot from them. I hope you saw the one recently posted on how to cut down on your chances of re-infecting yourself, if not, I can get you caught up on that. As for your question about a 'Cure'; at the moment there are very few that are completely cured. Nat'l Jewish Health claims that they have cured a few. You have youth on your side. That is good for two reasons, (1) your body is stronger and can tolerate the treatment better. (2) new & better drugs and treatments are coming out in the next 18-24 months. So, you may have a better shot at getting rid of it. My advice is that you continue to learn ALL that you can about this. It is very important that you do. This is a nasty bug that sometimes invites other nasty bugs. Don't want to scare you, because we can live a long life if we take good care of ourselves.
We all have noticed that there is a LOT of ex-healthcare workers that have MAC on this forum. It blows my mind, really. What kind of healthcare do you do? If you are a nurse, what kind?
P.S. I live in S.C., so we are neighbors!
Can you give me information about the new medications etc that might be available in the next 18-24 months
Jo Ann
@jkiemen Jo Ann, I just posted them yesterday. Will see if I can find the post again and do a copy and paste on that.
@jkiemen Yes, the new ones that will hopefully be approved next year is: Lipoquin/Linhalig it is an inhalable form of ciprofloxacin. The old name for it was Pulmaquin. The drug, Clofazamine is at the open label stage. and is supposed to be good for m. abscessus treatment. From what I have heard at the D.C. convention, the inhaled amikacin holds great promise and that is what they are putting you on.
Other good websites are videos of past conventions by NJH (National Jewish Health). Those are very informative.
Hi Jo Ann K, if I remember correctly (I only saw photos as the infection was before my employment but I saw the patient in follow up) the rash was erythematous, maculopapular and followed an involved laser procedure. I am sure there was more - but its been so long I might blur cases. She had resulting scarring.
I have had Ig testing done and it was all within range. I will definitely look into the videos about water sources. Its very common to grow there, correct?
If you google 'skin related mac infection images', some of gross pics come up. It is a rare condition. It happens when you have an open would and get the mac germs in the wound. But, I think you would have to be super suseptable to get that.
Questions
1-If you turn your water heater up, you still mix the hot water with cold water that contains MAC so it's still in bath water etc since you can't bathe in 130 degree water?
2-If we drink water with MAC and don't have reflux, how does it get to our lung? Do they know if we can get MAC from drinking water? My doc says it has to be aerolized. Anyone out there explain this? It puzzles me. I boil water but do have a glass in restaurants.
Thanks gang
KayS
Would like to piggyback on Kay's questions and add the following:
How long does the bacteria live when not in water, soil, or other medium? Does it stay on our aerobika/nebulizer if we do not clean well? Why do we have to rinse the aerobika/nebulizer in distilled water after washing in regular?
Most of us do not boil water to drink. How safe is it to drink spring water?
I, as Kay, have much that is puzzling. If anyone has any answers, would be appreciated. Thank you, Terry
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I am glad to hear you are tolerating the antibiotics. I also work in health care. What does the skin presentation look like? Has anyone done any tests on your
immune system? Although I am in the “age range” for getting this, I was otherwise always healthy but learned about a month ago that my IGG and IGG1 subtype was low. So far noone has determined if this is related to getting this MAI or because of the MAI.
Maybe that is one question you can ask. I think there have been some posts with some successful clearing.
There are allot of posts about reinfection due to water sources at home and there are some video’s that are available online about that.
Jo Ann