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MAC Reboot - After 3 Years Post Meds
MAC & Bronchiectasis | Last Active: Nov 19 3:24pm | Replies (50)Comment receiving replies
Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.
Replies to "Hello, My name is Mim and I live in Australia, Melbourne to be precise. I came..."
@mimdavidson
Welcome Mim
Yes if you have brochectasis you will be susceptible to these organisms and others. Do you nebulize saline and do airway clearance? Trying to keep the airway clear and clear is essential.
I have had mycobacteria abcessus show up and disappear several different times over the last 4 years and I was never treated with the antibiotics. I guess abcessus is the more difficult one to treat too.
So this disease can go away on its own too.
Also as Carolyn said our mentor Teri uses rotating antibiotics a different one each month for 7 days which is working for her.
Take care.
Shari
Someone on one of the ntm patient forums I joined (maybe this one) recently posted something her doctor said which made sense to me. He said that mycobacteria are like a stinky uncle sitting on your couch. He never goes away but so long as he stays on the couch, he doesn't cause trouble.
I assume the antibiotics (hopefully) put him on the couch!
Hi Mim,
I was diagnosed with MAC and bronchiectasis 15 years ago. I was on the "Big 3" for 18 months at that time. About 10 years ago I had a positive sputum culture, again, for MAC. Because I was pretty much symptom free with O.K. pulmonary function tests and CT scans, the physicians at Mayo Clinic decided not to treat. Fast forward to today...I am now having some symptoms (weight loss, increase respiratory illnesses, chest tightness). The MAC is still there (along with a few other lovely bugs!) so we have decided to treat it again. Back on the "Big 3" starting next week. Although it isn't pleasant, I've gotten through it before, so I'll do it again! Good luck to you.
Cindy
@mimdavidson Hello Mim! The recent outbreak of fires there in Australia has me very worried about some of our members who live there. People with mac /bronchiectasis can be super sensitive to smells and especially smoke. Are you alright? Do you need to evacuate?
@mimdavidson Hello again. As you may have read already, when one has bronchiectasis; the threat of recurring mac, pseudomonas, etc., is always there. The lungs are permanently compromised. That is why I have been on maintenance meds since 2014. You can click on my picture icon and my regimen will pop up. My med plan may not be right for all patients because it would depend on your suseptibility test outcome. So far, this has kept me mac free for the last five yrs.
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Hello Mim, I am so sorry you think it has returned. This group is wonderful for information regarding these things. I am currently waiting to start treatment for the second time. They are currently testing my cultures against a variety of antibiotics. I was on ethambutol, rifampin, and azithromycin for 18 months and they want to be certain I don’t have a resistance to the next round they put me on. Not sure what I will be on yet. Our mentor Terri had written that the reason it comes back is what caused it in the first place has not changed. That made sense to me. She also talked about a maintenance once finished with the 18+ months.
So, welcome to this great group. I hope you find answers and solace here. Best, Carolyn