In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Aug 17, 2019

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot…have been doing it for years. This year we had a new mulch supplier…… I could use a pep talk, if anyone has that for this!!

@sueinmn

I'm VERY curious about what you hear. MAI cannot be diagnosed by CT as far as I am aware, but someone else may know something I do not. NTM/MAC/MAI is a very slow-growing bacteria related to TB, and is diagnosed through a culture grown out in a specialized lab. The process takes at least 6 weeks, and for proper treatment is followed by exposing the bugs to various combinations of antibiotics to see what will treat your strain. The sample may be procured via a cough, or a bronchoscopy. There are other bugs that can cause the pneumonia as well. I was treated for pseudomonas pneumonia after cultures were taken (that culture only takes 2-3 weeks, and usually a shorter course of treatment – mine was 2 months with Levaquin, then inhaled Tobramycin). Then the second set of cultures came back confirming MAC and I have been on that treatment over a year, first 3 times weekly, now daily. My husband, who also has bronchiectasis, had neither pseudomonas nor MAC, but yet another bacterial pneumonia (I don't remember specifically) and was treated with 4 courses antibiotics (2 different ones at different times.)

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@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.

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@jenniferhunter

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.

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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.

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@sounder27

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.

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@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.

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@sueinmn

I'm VERY curious about what you hear. MAI cannot be diagnosed by CT as far as I am aware, but someone else may know something I do not. NTM/MAC/MAI is a very slow-growing bacteria related to TB, and is diagnosed through a culture grown out in a specialized lab. The process takes at least 6 weeks, and for proper treatment is followed by exposing the bugs to various combinations of antibiotics to see what will treat your strain. The sample may be procured via a cough, or a bronchoscopy. There are other bugs that can cause the pneumonia as well. I was treated for pseudomonas pneumonia after cultures were taken (that culture only takes 2-3 weeks, and usually a shorter course of treatment – mine was 2 months with Levaquin, then inhaled Tobramycin). Then the second set of cultures came back confirming MAC and I have been on that treatment over a year, first 3 times weekly, now daily. My husband, who also has bronchiectasis, had neither pseudomonas nor MAC, but yet another bacterial pneumonia (I don't remember specifically) and was treated with 4 courses antibiotics (2 different ones at different times.)

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@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)

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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.

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@irene5

@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)

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@irene5 are you doing better now, I hope?

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

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@sylvermoon8

@irene5 are you doing better now, I hope?

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@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.

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@deborahwolf

The bronchoscope can be easy if you have a good anesthesiologist. I let them know how scared I was and they gave me enough medication that I didn’t remember any of it. Good luck!

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@deborahwolf it was easy.

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@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

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@sylvermoon8

So glad the procedure as easy for you. There is so much to absorb with this diagnosis that fear of procedures shouldn’t be added to your worries.

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@deborahwolf

So glad the procedure as easy for you. There is so much to absorb with this diagnosis that fear of procedures shouldn’t be added to your worries.

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I thank you for your help. I am calming down about this. I had a long discussion with my doctor and I have a plan. Right now it’s to wait for biopsy results. One step at a time. I think this is a great place to share information and to also support each other! And it’s really helpful to know how people have gone through the same thing you are facing. But I also know we are all different and what is good procedure or strategy for one person may not work for another. Information is valuable but in the end it’s the doctor that you trust that you listen to. I am glad I joined this group. I feel for everyone going through this, it is very tough.

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