In shock after MAC diagnosis

Ugh- belly pain, nausea, fatigue, loss of appetite, weight loss, intermittent diarrhea. All are manageable, and preferable in my mind to the infection advancing and further compromising and/or destroying my lungs. And when I was sickest last year, I coughed almost non-stop, was so tired I could barely move, and was afraid to be around my grandchildren, who were both preemies and as a result do not have very robust immune systems. I was also afraid to be around my several immuno-compromised friends and family members. While MAC is not contagious for most people, my ID doc says it can be devastating to those with underlying conditions.

I was worried about having MAC and saw a pulmonologist, but I didn't have it. I was having repeating lung infections about every other month and had excess phlegm that kept building up until it turned into an infection. When I had prior surgery, I was asked to put Mupiroicin (Bactroban) antibiotic ointment in my nose for a couple weeks as a precaution against staff infections, and I had tried this for the lung infections and it worked. My doctors gave me prescriptions for the ointment and I used it every time this happened. I have asthma and allergies and none of my treatments were controlling the phlegm. I read some literature that said that women are more prone to asthma because of estrogen that causes fluid accumulation in the body, and that after menopause, asthma improved. I am on bio-identical hormone replacement, and asked my doctor about this and he said this could be the cause of my issues with excess phlegm in my lungs. It was not just my lungs, but body wide fluid accumulation. I've been on hormone replacement for a while and as a test, stopped it completely for a month and the excess phlegm cleared up and I was breathing better again. My doctor has lowered my estrogen dose and it seems to have taken care of the issue. Often I just take half the dose. I'm mentioning this for anyone else because the excess phlegm sets up a good place for germs to grow, and my doctors missed this connection until I asked about it. If you are a woman who already has a lung infection, this could just add to the problems.

@sueinmn I was told by a cardiologist friend of the family that MAI has a very specific look on a CT, however a formal diagnosis can not be made via the CT. But I will ask about that.

Jenniferhunter. Thank you for this info. I am taking hormone replacement as well and never made a connection between that and excess fluid or mucus. This is yet another reason for me to slowly wean off that medication.

@sounder27 You are welcome. I had this problem of re-occurring lung infections for a couple years and told my functional medicine doctor about this many times. We had retested all my allergies for my injections and he had prescribed generic Singulair in addition to an inhaler. Since he is the one testing me and prescribing the compounded hormones, he should have figured this out. He had started lowering my dose a while ago, but it was still too high. It's been long enough, that going without hormones isn't bad. It's the changing levels that cause hot flashes and I'm probably more stable now on my own without them. I'm still going to take some and the female brain has estrogen receptors, so it helps with mental sharpness. I plan on relaying this information about hormones to my pulmonologist, but I was waiting for a period of time to see if the cycle is broken, and I think it is.

@sueinmn when I was diagnosed the CT scan said “indicative of MAC/MAI” and I was immediately sent to a pulmonologist who did a bronchoscopy, and the culture from that was sent out. It came back positive, and the rest is history. (Irene5)

I didn't have much trouble with rifampin until the last ~2 month treatment. I had tummy cramp and diarrhea about 2 hrs after taking rifampin. About the same time I had reaction with morning antibiotics, starting to have diarrhea in the morning. My treatment was completed one year after negative sputum test.

@irene5 are you doing better now, I hope?

@catalin so you are over treatment? I’m glad you are better.

@silvermoon8Thanks for asking. Unfortunately I’m not doing very well right now most likely because I have other health things that impact me. I am a very positive person and have a very supportive family. My weight (or lack there of) has been my biggest problem. I go to UMass ID for MAC treatment. They have been excellent.