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

There is a strong correlation in some people. In my case, I have no GERD, silent or otherwise, based on extensive testing. But I too have had chronic sinus infections in the past (fixed by roto-rooter and septoplasty) as well as asthma, allergies, hyperreactive airway, and repeated episodes of bronchitis & pneumonia. It is believed my MAC came from exposure to soil contaminated by feral chickens.

Sue

Hello - I wanted to follow up with my use of inhaled Tobramycin that I began using for pseudemonas in the late fall. I had usually used Levofloaxin, which always cleared it up, but I was concerned about my using it for so long and read about all the issues with neuropathy. So I tried the Toby and was hopeful as many of you said you had used it to clear up the pseudemonas. Well, it did not go so well. First, I lost my voice for about a week, then that finally cleared up, but with each day of using it, I just felt very sick. Then, I found that I was having a hard time breathing. The doctor said to use inhaled albuterol before inhaling the Toby; I did that, and it helped a bit, but I was still feeling very sick, all day long. So after 18 days of using this VERY expensive drug, I just stopped. Miraculously, the 18 days was enough to get rid of the pseudemonas and I just stopped coughing. I had another sputum sample taken a month later, and it was indeed gone. I feel lucky, as most of you had to be on the Toby for a month, then wait a month, and use the Toby for another month. I have had pseudemonas now on 4 different occasions, and I can only assume I will get it again at some point. I may go back to using the Levofloaxin in that case, as the inhaled Toby just made me feel SO sick. Best to you all, Pam in Sudbury, MA

I am so happy that you were able to tolerate the Toby for long enough to get rid of that horrible pseudomonas. I only lasted seven days on it before breaking out in hives and am still struggling to keep it suppressed enough to not treat. Prayers for you and your continued negative tests for pseudomonas. -Echo

I am new to this forum and relatively new to MAC. Actually, MAC is not what I have been told I have, but rather M. Chimaera, which I believe is another form of the nontuberculous bacterium. My infection is due to an open heart surgery preformed 28 months ago. I presented with a small fluid cyst at the surgical site on my sternum. The cyst was removed and it contained a surgical wire covered with fungus. Fungus was sent to Pathology, then on to an Infectious Disease Specialty Hospital in Denver. After waiting at least six weeks the culture grew M. Chimaeraj. I was originally prescribed Ethambutol, Rifabutin and Azithromycin and two weeks later Amikacin was added via CVC line. Before I go any further, please let me know I am writing my story in the correct "group" setting. Thank you.

Yes, even though your NTM is different from most of us, this is the right place. There are also some specific discussions here: https://connect.mayoclinic.org/discussion/m-chimaera/

There are many of us who have or have had M Chimaera in our lungs, and a few who have it from open heart surgery like you.

Welcome to our community. Do you have questions about your treatment?
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.

Hi I am taking 3 antibiotics for MAC and one through IV. I was wondering if someone considered Surgery as an option…I don’t know if this will help..
Carlos

Maybe Terri, @windwalker can answer you. I probably would consider lung surgery only as a last resort.
Sue

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

Thank you, Sue, for your informative and upbeat reply. No, running a marathon is not on my list; however, swim aerobics and swim gentle joints class are at the top of my list. I have missed these classes dearly. I liked the way you explained that once the meds are managed and I heal from the surgeries, I may be able to find a routine that works for me that can include something besides hospital, doctor or infusion clinic visits. My ID doc has explained to me that treatment will probably be 18 to 24 months, or longer. At 74 years of age, looking at 2 years of treatment, that drags me down, is exhausting. I did have baseline hearing and eye tests. I had a follow-up hearing test last Friday and discovered that hearing in my right ear has diminished considerably. I had mentioned to my ID Doc that after the first week of the Big 3 meds I had lost some hearing. She then added Amikacin and after 4 infusions of that drug, along with the Big 3, not only did my hearing get worse, but my liver enzymes went off the charts. I am currently taking only Ethamathrol and Clofaximine. The Doc plans to add Azithromyicin tomorrow; however, after the hearing test, I'm not sure what will happen. I am rather confused about the Clofaximine drug. I have been taking it 17 days and other than colored urine, and dry skin (itching) I have shown no other side effects. The info papers on this med indicate that 75 to 100% of patients who take this med experience skin color change. It may be too early for this to happen. I am very anxious about this reaction. As for having something to do each day that I enjoy, in addition to swim activities, which I hope to be able to begin again in the next few weeks, I have decided I want to draw. I've set up the space; have my pencils and chalk ready; a friend gave me an easel; sketch pads are aplenty. Now all I have to do is Start. Again, thank you for reaching out to me. I feel better all ready:)