MAC patients who have taken antibiotics

Hi @debregecz, we are in the same study :-). I'm going to NYU in NYC. I'm in month #2. Do you have any signs you are getting the Arikayce?

I take the antibiotics before I go to bed and probiotics in the morning. So far, so good.

Yes, I was told while at NJH that there have been some people that didn't know that they were a Cystic Fibrosis carrier until having gone through the NJH testing they suggest for a patients due to their symptoms etc. I'm sure many patients are surprised with what NJH does test for and what they, the patients, were told afterwards in hearing the results. For me it was confirmation that I had MAI and what it was called that was happening in the lungs. I am two years into having been told 'you have BE.' after the local PCP doctor ordered the CScan.
I am now 82 and the thought of what one has to do for ourselves going forward for me causes me to question, "how will I manage all this should I live into my 90's?" Meaning all the things we in general have to do for ourselves, (I'm single no family etc. and as we know this is common today for many) and then BE and a body that is taking on other problems with age. Oh well, I shall figure it out.
If I understand correctly you were not put on Antibiotics at 66 and this is your first go round???
Barbara

I again messed up, again. Meant to send a reply to you directly. Hope you find my reply.
Barbara

Barbara, I had a routine chest x-ray at age 65 that showed nodules. I was then referred to a pulmonologist who suspected MAC, and since I wasn't symptomatic, we simply monitored for a while. After I had done some research, I mentioned that CF ran in my family. He then did a bronchoscopy and tested for CF. I was positive for MAC and was a gene carrier. My nodules pretty much came and went for a few years. Last year my Husband of 50 years passed, and I was told one of my nodules had gotten larger and I was referred to an Infectious Disease MD. He suggested the NJH study. I had more testing and a CT scan, which also showed my breast implants from a previous bi-lateral mastectomy, had ruptured. Good news is I was able to schedule the surgery until after my trips. I am now recovering from that surgery (5 days ago). Thankful for my friends and neighbors!!! I have been trying my best to live my life but still be cognizant of my MAC. It can be somewhat challenging but doable. I have traveled quite a bit this year: Boston cruise to Canada; Train from Quebec to Montreal and bus to Niagara Falls; Denver (Santana concert at Red Rocks; Wisconsin and Guatemala. Hope to start planning my next trip soon! Hang in there!! A can do and positive attitude helps! My Mom is still alive at 93 and most of my relatives lived a long life! Oldest was 104! We have a lot to do yet!

I thought I was responding to one person (Barbara) but see you are another! I really don't know what the signs would be for the Amikacin?? I do cough quite a bit after the treatment and my voice is rather raspy now. I simply take swigs of the Kefir throughout the day and try to take my meds and nebulize in the morning after my walk. I now wear a mask doing yardwork, no hot showers, hot tubs, saunas or running thru the sprinkler. I live near the coast, and we have a community saltwater pool. I am having my tankless water heater cleaned next week and the temp raised to 135 degrees. I recently went to Niagara Falls and wore a mask much of the time. Cruise ships have in room refrigerators, and you can request handheld shower wand. Also check out https://connect.ntminfo.org/home another source for information.

When I took these antibiotics 12 years ago (for 18 months), the nurse practitioner advised me to take a probiotic to keep my system in balance (if possible). I drank a cup (8 ounces) of Lifeways kefir at noon every day because she advised me to drink kefir 4 hours after or before my meds. I never had a gastro problem, thank goodness. I still follow this advice whenever i take an antibiotic. My favorite flavor is blueberry.

Interesting and thank you for sharing....nodules came and went for a while....I take it, if I understood correctly that was previously and without antibiotics.????
We all have some type of stress at times and it can cause havoc on our bodies...as you probably know. Stress might have brought on the nodules again during that period of time before losing your husband . So much changes after a loss such as you have been living with. Good for you taking those trips! You go 'girl.'
Wonderful hearing where you have been this year. All the good memories from your trips are probably helping recovery from your surgery. I have looked at the Boston to Canada cruise. What ship did you take?? I was in Quebec and Montreal (World's Fair) in the early 60's and would enjoy another go around up there.
Yes, thanks the positive attitudes are what help get us through all. So far I think I'm still there with that. Just needing to decide about starting the antibitotics for MAI with my not having but one outward symptom....chronic mucus clearing nearly all day long. Clearing the throat in public is uncomfortable for me and one does get surprised looks in wonderment from stangers....I can understand why. So I am trying to figure it all out so I might follow your lead and travel some more.
Barbara

Barbara, yes, I only started the antibiotics this year. The nodule that grew was one I had for several years and had been slowly growing. My husband died suddenly of a heart attack. My MAC has been confirmed for years but once the one nodule grew to a concerning size, I was referred to the ID MD. I took the Princess cruise from Boston. I typically go on Princess or Holland America. When I have coughing fits, I simply acknowledge I have a lung disease, but I am not contagious. If they ask what it is, I just tell them MAC and if they are interested to look it up. I don't bother trying to explain. There are lots of tour options out there. Even single tours! I am looking at Peru and the Galapagos, National Parks Tours, and hopefully London/Paris. My treatment ends 4-08-2025 hopefully I am MAC free then!!

So it was somewhat a watch and wait for you with not having started the antibiotics until now. It appears slow growing in us before we learned of it and slow growing, if we are lucky, after having learned of it, BE/MAC. Wishing you good results on the antibiotic regimen.
Loss of that magnitude, 50 years of marriage, is life changing. With all my losses I found that as long as I could find events or instances surrounding it that I was grateful for, in spite of the heartbreaking loss, I managed it all better.
Got it, keep it simple "don't bother trying to explain."
Yes I have quickly read about the single tours. What fun that could be with the right group.
Hope to hear you say at sometime: 'I'm in Paris' etc. etc.
Barbara

Thank you for your time and the info 🙂