(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I hope you can hang in there - while your infection is in a different site than most of ours on this forum, I think I can safely say we all felt similar fear and fatigue like you. It does get better!

As for the medications and side effects, each of us reacts differently. Please keep your ID doc fully informed so they can try different meds. Did you have baseline eye and hearing exams when you started the meds?

If you and your ID doc can find a regiment that works for you, your body will gradually accommodate to it. Your medical appointments will be less frequent once the meds are managed & surgical site is healed, and you will find what works for you. Most people come up with a regimen to manage the side effects, and a pace in life that acknowledges the fatigue (which is partly infection, partly medication.)

I don't know the long-term prognosis for disseminated M. Chimaera because it has so recently become a known issue, but those of us with NTM/MAC in our lungs usually manage to beat it back to a manageable level, where we go off the antibiotics, and may need short-term treatment for exacerbations.

I was treated for just under 2 years, and now have been in management (airway clearance, nebulizers, steroids & antibiotics occasionally) for 27 months. At 70, and with a list of other health issues, I manage to travel, volunteer, play with friends and grandkids most of the time. If I get fatigued, I take a nap or declare a couple day time out to recuperate. I also hire out work I would once have done myself to preserve my energy for what I choose to do, and ask for help more often.

Probably the most important thing is to have something non-medical to do each day, even for a short time. What activity would you most like to get back to? Can you think of a way to do it, at least a little? (Running a marathon is probably not on the list.)
Sue

It has been suggested that I post my comments on the M. Chimaera group post. I seem to be having difficulty accomplishing that. I think I posted on the MAC/Bronch group site again. Any suggestions to point me in the right direction?

I hope you can hang in there - while your infection is in a different site than most of ours on this forum, I think I can safely say we all felt similar fear and fatigue like you. It does get better!

As for the medications and side effects, each of us reacts differently. Please keep your ID doc fully informed so they can try different meds. Did you have baseline eye and hearing exams when you started the meds?

If you and your ID doc can find a regiment that works for you, your body will gradually accommodate to it. Your medical appointments will be less frequent once the meds are managed & surgical site is healed, and you will find what works for you. Most people come up with a regimen to manage the side effects, and a pace in life that acknowledges the fatigue (which is partly infection, partly medication.)

I don't know the long-term prognosis for disseminated M. Chimaera because it has so recently become a known issue, but those of us with NTM/MAC in our lungs usually manage to beat it back to a manageable level, where we go off the antibiotics, and may need short-term treatment for exacerbations.

I was treated for just under 2 years, and now have been in management (airway clearance, nebulizers, steroids & antibiotics occasionally) for 27 months. At 70, and with a list of other health issues, I manage to travel, volunteer, play with friends and grandkids most of the time. If I get fatigued, I take a nap or declare a couple day time out to recuperate. I also hire out work I would once have done myself to preserve my energy for what I choose to do, and ask for help more often.

Probably the most important thing is to have something non-medical to do each day, even for a short time. What activity would you most like to get back to? Can you think of a way to do it, at least a little? (Running a marathon is probably not on the list.)
Sue

I took the big 3 for several weeks and after having a bad reaction, I stopped the treatment. I am asymptomatic and have started gaining back the weight I lost. My doctor suggested that I be under observation until I start having problems. Did you have the same experience?

I took the Big 3 plus other meds (other bacteria) for almost 20 months. The cumulative effect was pretty dreadful, so even though positive, I quit.
Instead I take Mucinex & NAcetyl Cysteine to thin the mucus, neb 7% saline and do airway clearance (huff coughing or Aerobika). 7% saline has been show to slow/stop the growth of MAC bacteria. Airway clearance keeps the amount of mucus in lungs to a minimum, limiting the nice, warm hiding place for NTM bugs to grow.
Sue

Thank you, Sue—I don’t seem to have mucous. (Wouldn’t I feel a need to cough?). Could I have it in my lungs and not know it?

Thank you, Sue—I don’t seem to have mucous. (Wouldn’t I feel a need to cough?). Could I have it in my lungs and not know it?

That's a great question. I'm like @cavlover - if I get lax about using my saline nebs & airway clearance, I don't really cough. Then a few days pass, and allergy or asthma prompts a coughing spell, and the "gunk" is there. Or I begin to feel a "heavy spot" in my chest, or notice a little shortness of breath. When I begin to neb faithfully again, out comes the mucus.

Over the past 4 years, I have noticed a very encouraging trend in this group - people who faithfully neb and/or use a mucus-thinner, and do airway clearance seem to be able to stay healthier. Maybe not totally, and maybe not everyone, but a significant number of us. Hereis a discussion about airway clearance that may interes you :https://connect.mayoclinic.org/discussion/what-is-considered-successfuly-airway-clearance/

To me, it is a small sacrifice of time to avoid the meds that seem to make me so ill and to maintain my quality of life.
Is your doctor a pulmonologist? Do they have experience treating bronchiectasis specifically?
Sue

Thank you for inviting me in! Open heart surgery 28 months ago went fine. On last Cat Scan a cyst was found on the sternum bone. Upon removal a sternal wire was removed that was covered in fungus. After 6 or 7 weeks this culture grew to be M. Chimaera and my life changed. I was told a machine used in the operating room was contaminated and caused the infected mist that applied itself to my open wound. It is a very slow growing infection so appearing at this late stage does not seem out of character for this infection. I was immediately referred to ID and was told the rigorous treatment that is involved for getting rid of this infection. I was given no alternative, it was take the treatment or suffer through the wrath of the infection which does not have a high survival rate. Within two days I was taking Ethambutol, Rifabutin and Azithromiycin (6 total, orally, each day) and 10 days later the drug Amikacin taken by infusion, three times a week. Right away I noticed diminished hearing; fatigue; balance issues and when a blood draw was taken, my liver enzymes were 800+ and 600+. We stopped everything for a few days and now have started adding back in each drug, one at a time. In the meantime I started taking 100 MG of Clofaximine. I am currenting taking that med along with Ethambutl (3 tabs) every day. My hearing is getting worse and I am noticing eye changes. My skin is extremely dry and itchy. Fortunately, I have not experienced any stomach issues nor skin color changes. While taking all of these meds I have had to have an operation to remove the infection that was found around my sternum incision (this was located via a PET Scan). A golf ball sized area was removed and the cavity was filled in by some stomach fat that was transferred to the open cavity. That all seems to be healing fine. I feel like a ping pong ball in that I am going somewhere, hospital related, almost every day. The fatigue and rigid appt. schedule keep me tethered to the house or a medical facility. Until this forum, I have never heard of anyone having to experience this before. Is this something that can be cured or will I be "treating" this situation as long as I live? I have always considered myself "a fighter"; in this case I'm not sure what is realistic to fight for. Give me some hope, please.