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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Jan 19 10:15pm | Replies (9354)Comment receiving replies
Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina
Replies to "Thank you Terri, I'm going to check those out. I'll also continue to read through these..."
Yep! Ditto that! My mom, my aunt, and now me!! Irene
@windwalker, Terri, I am SO curious! You said .. 'I got opinions from three drs when first diagnosed with MAC on whether to
do the three drug treatment. Two out of three said they would not do it because there is only 50% chance it would work and it is hard on the liver.' Were the THREE doctors you are talking about INFECTIOUS DISEASE doctors knowledgeable about MAC?? You are now a smart cookie having done your 'due diligence' here on our Forum so you well know if/or NOT a doctor was/was not knowledgeable about MAC. I am really curious .. in retrospect .. do you think they told you correctly??
I am wondering because now Mayo IS treating you properly with antibiotics .. BUT you say .. ' I may need a lung transplant in the near future' .. my question is: IF your THREE DOCTORS had NOT told you NOT to do antibiotics initially .. MAYBE might not need a lung transplant now??
Just wondering .. because I know I refused antibiotics out of fear initially .. UNTIL I got a SECOND serious mycobacterium. Just wondering if your mycobacterium colonized more because like me you didn't go on the antibiotics soon enough? What is done is done .. but it would be good information for our Forum. Hope you don't mind me asking! Hugs! Katherine
<br><br><br><br><br>I was diagnosed w/MAC in 2005. I was a single mom at the time and dealing <br>with a wild teenager and stressful job. All three drs were pulmonologists and <br>were the best in their cities (Richmond, Va. and Tucson, Az.) Not a one <br>suggested I see an ID doctor; I didn't even know there was such a doctor. <br>Because of my situation at the time, I did not have the where-withall to <br>investigate. My doctor at Mayo told me that, yes, since I did not get proper <br>care in the last 20 yrs that my lungs are severely damaged. He said it was a <br>shame because a lot of it could have been preventable. We are not sure if doing <br>the three drug treatment would have been the answer either because I have other <br>genetic things going on that are causing my lungs to deteriorate. Like I said <br>before, my system is so delicate that I didn't want to tax my liver, that is why <br>I declined the 3 drug treatment. The one antibiotic they gave me sufficed and <br>knocked the colonies down back in '05. They didn't come back until <br>1013.<br> <br><br>
<br><br><br><br><br>The first pulmonologist I saw strongly wanted me to do the 3 drug <br>treatment, then, two others said they wouldn't do it if they were me. Their <br>biggest concern was for the liver. Then, when I read more about it, I chose not <br>to. I read it does not 'cure' you of the disease and it could come back, so I <br>was thinking of my liver. So far, the one antibiotic courses seem to be keeping <br>the MAC in check. I battle pseudomonas and aspirgillus as well. My lungs have no <br>fight left in them.<br> <br><br>
I am so sorry to hear that. That's the first thing my pulmonologist did in Connecticut - send me to infectious disease! What I have found over the years is that some very good doctors covet their particular specialty and don't refer when they should. And what we don't know to ask we don't ask!! Wishing you all the best in the "present" with your situation. I will say a prayer for you. Irene
<br><br><br><br><br>Thank you, Irene. Prayers have gotten this far I am sure.<br> <br><br>
@windwalker .. Terri, I am so sad for you I could just cry .. it is just so wrong. But what can we do? Just deal with what life hands us .. what is .. IS .. as the kids say 'Sh..t happens'. But what a rip!! BAD doctors .. genetic issues .. doing the best we can at the time .. rough. I'm just glad you are here now among us who will be here for you .. helping you along the way .. supporting you in any way we can. Just wish you didn't have to be .. but we are here. Hugs Katherine
@windwalker .. Terri, so sad, we all do what we think is best at the time .. but so sad that you are not looking at a lung transplant because of the damage done to your lungs. Hugs! Katherine
@irene5 Irene .. "And what we don't know to ask we don't ask!! " THAT IS SO TRUE!!!!!! I love the saying "When we know better .. we do better" .. and now Terri is living with the consequences of a lung transplant because of lousy doctors!! Makes me SOOOO mad! But we can all now be there for @windwalker, Terri as she fights this thing! Hugs, Katherine
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<br><br><br><br><br>Most immunodeficient diseases are heritary.<br> <br><br>