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

<br><br><br><br><br><br><br><br>Or if we can show that he has a genetic marker. Does anyone else have someone in their past who has died of MAC or of a respiratory disease, that may have not<br> been diagnosed as MAC, or was diagnosed with tuberculosis, which could have been incorrect diagnosis of MAC back then, we are talking a very long time between you and a child of yours or a sibling getting diagnosed with this, as long as thirty years, more<br> if it can skip a generation ?<br> <br>Or that we can show that it is not only a species jumper, but also carried in water and soil, which is true,making it a potential biohazard, then it would go<br> in with the terrorist agent, anthrax, and that is a government funded project.<br> <br><br><br>

<br><br><br><br><br><br><br><br>I would agree with your positive attitude. But…. I absolutely will not give up figuring out the how we got it, what is correlated, etc….because there should<br> be better testing and better treatments. If you watched your Mother and your Aunt go through this and find that not that much has changed in 30 years then peace is great but I will find it when I find my answers. If this has a genetic component then I want<br> to know, and I think everyone with MAC should know that., is your daughter or son or niece or nephew going where you are? Is this environmentally related, did I just share the same space or the same habits. Finding correlating issues is a central key to finding<br> the answers, and within those answers lies a cure, and better testing. By the way, it is a proven medical fact that a positive attitude is directly correlated with a far superior immune system, lots of papers on that on pubmed.  Most of the research out of<br> Berkley and UCLA.<br> <br><br><br>

<br><br><br><br><br><br><br><br>Hi, I had rheumatic fever when I was 8. And I have had a horrible time with allergies all of my life. Wonder if anyone else had rheumatic fever? Thanks for<br> your reply. I am very serious about getting to the bottom of this, and I am very serious about putting one of the researchers to work on it as soon as I catch him at work.<br> <br><br><br>

<br><br><br><br><br><br><br><br>Ask the new doctor, just call or email his office, he may want all of her medical records sent to him so be ready, and FIRE the current one immediately!!! You<br> hire them, they work for you, if they do a lousy job, or no job at all then they should go swiftly. You  get one body and it belongs to you. I keep asking “where have all the doctors gone”<br> <br><br><br>

<br><br><br><br><br><br><br><br>Thanks that clears things up for me, and they finally gave me something for my splitting headache. My dog appreciates that, he has had a bath and a nice walk.<br> Which he really deserved for having to take extra special care of me for last month.<br> <br>Looks like MAC is becoming more widespread and mutating quickly as well. Time for action, and people in the right places to pay attention.<br> <br><br><br>

From Kay SMy parents both had Tuberculosis and were in a sanatorium. That's where they met. That was 8 years before I was born. I don't see a genetic connection unless it is a predisposition to the lung disease. Or predisposition to Tb and MAC. That could be genetic right?I suppose they could have had MAC. There were no TB medications in the 30s and surgery was the cure. My mom had a lung removed and my dad part of one. My mom was in the sanatorium for a couple years. If one of them did have MAC or I have a predisposition to it from them that would be interesting. I've told this to all my docs which they seem to find it interesting but nothing more than that. They tested me for alpha 1 antitripsin and I was negative for that genetic marker. Thoughts? Anyone else have a parent with TB or MAC? I know one persons mom had MAC.THANKSKay

@kay strand, Kay, as I have mentioned before .. I had the 23andme genetic test which only test about 1% of our genetic code. It came back with a genetic code showing a genetic deficiency that can affect the lungs. I showed the report to Dr. Aksamit thinking he would totally discount it as the "spit test" .. but he was actually interested in it .. took the copy and made it a part of my medical report .. noting it:
PER MAYO REPORT: Alpha-1-antirypin heterozygosity, Z allele

From my File Cabinet: 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.

Who knows quite how it all fits in .. but! Hugs! Katherine

Wow this is interesting. I have already done the Ancestry 'spit test' but I'm more interested in familial health problems. Both my parents were smokers. My mom had Lupus and my dad had hemochromatosis.

This is Connie. I will mention this to my ID doctor tomorrow as I cannot take Toby. Thank you!

This is Connie: My reaction was quite by accident. I was having some eye problems and was using the Toby eye drops. After a few times I had some tightness in my chest and trouble breathing.