do yo have anything I can use to support the unknown probability this is contagious.. Anything. Ive been in healthcare for over 20 years-- one doctor vehemently said "this is an opportunistic infection"I redirected handed him him to address me as Doctor also and afterhis eyes widened and he sank in Her seat, I responded with all infections-viruses are opportunistic..... So her I am searching for info on transfere and or infections rates and established and unestablished routes of transmission. I want good or "bad" studies. It pisses me off when providers use absolutes. " For instance it was posted MAC isnt carried thru water.. thats BS it is there is a good study that says it is. So if you have read this far u might as well read the rest.( and excuse my typing) The story of transfere of TB is infected person spits on train it drys fulminates into airand bingo new host is born... For "them" to say that MAC is done differently is nonsense. person with mac spits on ground or scrubs it drys (16hour shift) fulminates into a vegetativeenvironment aka nurse aairway and -- new host is born. ( Constructive criticism is a blessing please do not hesitate. )

So here’s what I will say- I understand your anger and frustration as all of us here in this site are here because of MAC. Some of us are having more physical ramifications than others. MAC is considered an opportunistic infection as people with HIV seemed prone to it. Then along came us - the non immunodeficienct group. Because it is considered an opportunistic infection it does not need to be documented with the Center for Disease. So there are probably way more of us out there. Somehow we all became “susceptible “ hosts. I’m in a family of twelve - and only I have been “blessed” with it. But I have other factors that may have helped it along like GERD and old age kyphosis due to osteoporosis and arthritis. I think the GERD is a big deal because by taking proton pump inhibitors we are allowing things that gastric juices would normal kill - get through! And MAC is taken in orally or nasally. So I think there are a lot of factors that make us a susceptible group. It may very well be discovered someday that it is contagious person to person, but for now the research doesn’t support that. I think Katherine had said once that we all go through stages with this. (Anger, denial, acceptance etc.) My family blames the dentist office for mine. It really doesn’t matter at this point. What matters most is finding a cure because the Big 3 are not tolerated well by many people, and even with them it isn’t a “cure.” And that’s what I told the people from the research study.

Well said, @irene5. If you have bronchiectasis, the chances of you catching MAC is much greater than someone who does not. I'm one of those who does not have any immunodeficiency. But my bronchiectasis creates a hot bed for MAC to be trapped and thrive in my lungs.

Absolutely! Both my husband and I have bronchiectasis. So I get that piece concerning MAC. Two of our six Chinese children will always test positive for TB because of their BCG and three are hep B positive. We have all lived together for many years and have never “caught” anything except love from them!

Love is the best thing to catch!

@irene5 That's interesting. I grew up in China and have never known about BCG. My TB skin test will always be positive although I have never had TB. But my chest X-ray does show scarring in my lungs. So the doctors here think that I must have been infected by the virus but never developed full blown TB. I don't know if there was BCG back then or is this the more recent thing.

I think BCG has been around for a while, but only two of my six test positive. They all have BCG scars, some larger than others. Their X-rays come back ok, but they were treated with isoniazid for about a year. (Boston hospital) It was explained to us that BCG is a live virus as opposed to in the US the vaccinations given are dead viruses. The two that are positive were older when we found them and had more vaccinations. I only know that’s how it was explained to us @ling123. Sorry about the scarring for you. When I was a child a doctor told my mom I had come in contact with TB and there was scarring in my lung. I never had another doctor say that so I am not sure if that was accurate, but there was one summer I had some difficulty breathing and a cough. I frequented a public pool in Hartford as a child. Maybe that’s another piece of the “susceptibility” puzzle.

@irene5 At least we know that our bronchiectasis did not occur out of the blue. Although there is no cure for this disease yet, it is much easier to deal with it when we know where it most likely came from. It is very frustrating and more scary if the source of a disease is a mystery. I'm not surprised that your adopted children have all had some type of exposure to TB and Hepatitis while living in China. More likely than not, these children had been born and lived in either rural areas or smaller cities where sanitation and health care are still inadequate. These exposures are no longer an issue in urban areas where I grew up. I'm so glad you found them and brought them into your loving and caring fold.

@ling123 Our first is from a very poor and small orphanage in Haining. The second and third from a very bad orphanage in Changsu City, the 4th from beautiful Hangzhou, the fifth from the club met we like to say in Qindao, and the last from Fuzhou. All are special needs children who have blessed our lives in ways unimaginable. And none of what I just wrote has anything to do with MAC. Our first adoptee weighed 25 pounds at age six and is hep B positive and has the positive TB skin test. She came with scabies, lice, and giardiasis on top of that. The children walked in yuck from the pigs. At age thirty she has her masters in social work from UConn and is a soccer coach and social worker. She’s come a long way from Haining - as have the other five. She is my biggest supporter, and told me to take the Big 3 and kick MAC in the butt!

@irene5 It is simply amazing what you've done for these children. They have been give new leash on life thanks to you and your husband.