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NTM/MAC/MAI: We must advocate for ourselves

MAC & Bronchiectasis | Last Active: Sep 17, 2022 | Replies (145)

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@heathert

The things that I wonder about helping cause my MAC are: Spa pool use, Hormones/perimenopause, anxiety/stress, vegetarian(was eating very little protein), allergy sufferer all my life and sinus problems, family history of lung issues. Lets see what we have in common, if we all list what we think may have helped MAC get a hold in us , and reply to each others comments with what we have in common we may come up with interesting info.

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Replies to "The things that I wonder about helping cause my MAC are: Spa pool use, Hormones/perimenopause, anxiety/stress,..."

I had what most doctor consider the "spit test" .. the 23andme.com genetic test it showed the below. For the heck of it I printed out my report .. showed it to my Mayo Clinic doctor, Dr. Timothy Aksamit .. WOW! He actually asked for a copy of it! Frankly I have ALWAYS felt that nearly ALL mental and physical aspects of diseases will be found to have at least in part a genetic component. I certainly feel that my MAC/MAI did! Here is what my "spit test" reveal BEFORE I was diagnosed .. that I had the gene .. Alpha-1 Antitrypsin Deficiency. By the way .. I never smoked a day in my life!

Alpha-1 Antitrypsin Deficiency The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. Smoking, which can inhibit what little AAT protein an affected person does have, increases the risk of lung disease.

Hello! I believe I caught my MAC in a hot tub that was up to par with the chemicals. I remember it smelling kind of funky and was diagnosed two weeks later.

Hi Katherine. I am a carrier for the alfa-1 gene. Are you a carrier as well or are you full blown double gene?

Hello @windwalker, Welcome to our Forum, we are glad you found us! Do you have a first name .. makes it so much more personal! For your question .. I do not have a CLUE if I am a carrier or not .. I really don't know much beyond what I read in the 23andme report which pretty much stated:

Youhave one M and one Z form of the SERPINA1 gene. People of this combination may be at increased risk for liver disease, and may experience decreased lung function if they smoke. Variants detected: PI*Z. AAT deficiency is a genetic disorder that reduces circulating levels of a protein that protects the lungs by trapping it in the liver, where the protein is produced. AAT deficiency can lead to COPD.

Since I have never smoked a day in my life I really just found it interesting that perhaps there definitely was a genetic link to our disease. Question .. were you told there was a genetic link and that you also have that gene? Interesting! Katherine

Yes, I have one of the two genes for Alfa-1 deficiency I am MS I believe. I have low levels of the antitriptin but not considered deficient. I believe they still don't know a whole lot about Alpha-1. Especially why carriers tend to get the diseases of full-blown positives.

Can I ask what your Alpha alleles are? Are you totally positive for it or a carrier?

My first name is Terri.

Terri, PLEASE do not take this as gospel .. but I just went back on the LIMITED info I got on 23and me and found:
"Most studies indicate there that there is no increased risk for disease in MS individuals." .. SO if you are indeed MS .. this may give you some peace of mind?? But PLEASE take this with a grain of salt!!!! Do your own "Due Diligence"! Katherine

These bugs are very resistant, I have heard that these bugs are resistant to many chemicals including bleach, they recommend using 10% acetic acid vinegar can kill them for cleaning the home. unfortunatly we are not advised of this when buying a hottub.

Heather, I was told by Dr. Aksamit that hot tubs were a very REAL potential for mycobacterium so to stay away from them .. personally I wouldn't go near one with my propensity for this disease! Katheine