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Is there always an underlying condition when diagnosed with MAC??
Good Afternoon Villagers!
I was diagnosed with Mac a couple months ago, and just curious to know if others have gotten this and don't seem to have any underlying conditions? My ID doctor referred me to immunologist. It's my thought they're not going to find anything. I have a pretty large cavity, 3.7 cm. And my ID doctor said I've had this for quite a while. At least a few years. He even thought that a 2011 CT scan show at the beginning of it but wasn't sure. Either way, I don't seem to have any other health problems besides the fact that I had colon cancer in 2008 and had a complete proctocolectomey with no radiation or chemo, and then recently I had small bowel cancer and again I don't believe I'll have to have chemo or radiation. It looks like they got it all!! 🙏 I have been extremely lucky. I have a rare genetic disorder called Lynch Syndrome: I don't know if it could be from the cancer, but my ID doctor didn't think so. He said there's usually something else going on, a reason that you were susceptible to this but what? That's the question. I guess my question is are there others with Mac that there doesn't seem to be a reason for them getting this? No other underlying conditions? Or what could be those other underlying conditions? I should add that they did a biopsy on the Mass before it turned into a cavity, this was about 4 months ago (before they knew it was Mac and thought it was cancer), and they took biopsies of 4 lymph nodes the mass and then a couple other areas on the right lung... There was no cancer. They wanted to go in and check again when 3 months later my CT scan showed a lot more nodules and consolidation, and the wall of the cavity was thick so they scheduled me for a CT guided biopsy, (even though I had Mac I believe they thought I also had cancer) but when I went in they did the initial CT and it showed so much improvement that the radiologist didn't even do the guided biopsy and just told me cancer doesn't shrink! They were kind of surprised. The wall of the cavity had thinned out dramatically and almost all the nodules had dissipated. My ID doctor said that couldn't be from the medication because I wasn't on it long enough, only being a couple weeks at this point, and I was in the hospital during this time to have the small bowel cancer removed: so this was about 3 weeks ago. Any information anyone can give would be great! Any thoughts? Sorry for the long message!!
Thanks🤗😀
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@bellsina71 As with many other things in life, there are no absolutes in the world of NTM (MAC) lung infections.
Most, but not all, people have one or more underlying conditions. These include asthma, COPD, Cystic Fibrosis, history of pneumonia or bronchitis, an autoimmune disease (like rheumatoid arthritis) or a suppressed immune system. Or a history of chemo or radiation or smoking.
There is a (small) subset who have none of these, and doctors are working to understand what might cause their NTM. As you might imagine, since this is already a rare disease, the subset is a tiny group, and studies into the cause are small and recent. I imagine finding patients to study is like looking for a needle in a haystack! I did find one very interesting recent study that seems to indicate why your doc might be sending you to an immunologist:
https://academic.oup.com/ofid/article/6/12/ofz484/5645098
I will be very interested in hearing what you learn, especially since you seem to have had this for quite a long time.
Sue
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3 ReactionsMost information I have seen indicates some sort of other issue to allow infection with MAC. There's usually something affecting the immune system, such as a drug taken, or some sort of immunodeficiency. I have Primary Immunodeficiency, which means my body isn't making enough Immunoglobulin G. I now take monthly IG infusions to prevent all the frequent infections I was getting. My ID and pulmonary physicians both believe this is the reason I got MAC.
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3 ReactionsI have an appointment with an immunologist but it's not for about three more months because that's how backed up there. I just think it's strange because I really don't get sick very much and I haven't had any infections or anything until all this just happened suddenly. They found out I had Mac and small bowel cancer, within 6 weeks, well originally they thought the Mac was lung cancer also and they still thought it was cancer after I was diagnosed with the MAC, and I believe they thought that all the way up to the last CT scan where everything shrunk and looked better. I hope they figure out the underlying cause of all this!! It's nerve-wracking because I feel something's wrong with me but they don't know what it is.
bellsina71 At the end of 2020 my lung doctor said I had asthma, in less than a year, I had the asthma under control and was able to stop the maintenance inhaler and have no symptoms. I switched to a different lung doctor who takes much more time with me and more thorough. My new lung doctor ordered a lot of lab work all at one time. My x-rays shows a lot of scarring but an x-ray from 2011 does also. I think he was trying to understand first why I had even gotten asthma and to look for other possible things. If he had never ordered the mycobacterium test, I would have never know I even had the bacterium, MAC, it might have cleared up on it's own. I did know that I had alpha-1 antitrypsin deficiency, but I had never had any problems with lungs or liver that I knew of. But I have learned a lot more about it since lung problems started. You would think that most people would have preexisting conditions of something or some type of symptoms for the doctor to even order the test checking for MAC. With alpha-1, yeah, genetics could have caused my asthma, the effects of having alpha-1 could cause any lung or liver disease. I would say that is a preexisting condition.