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

Thanks for reaching out .Is your case similar ? Can’t understand how I got this and actually have it for so long keep in touch

Actually I just read your bio I don’t garden and I had the spectrum cultured .I live on Florida and actually got this bf I was tested for the flu this past Nov .

@beverly1945 I don't know where I got MAC from, its an opportunistic disease. They say those of us who have compromised immune systems or autoimmune issues or COPD pick up these bacterias.I had one coughing spell several years ago and multiple pneumonia episodes and i think that's when the bronchiectisis started. I've never had a productive cough. An Cray then a CT scan showed the bronchiectisis. and pseudomas back in Feb. Couldn't produce enough sputum for culture so my pulmonologist did a bronchiscopy and found MAC. I'm still confused myself on the exact bacteria but due to my reading here I'm going to get the hard copy of the test results from that first culture. I live in south Georgia 2 hours from Jacksonville. Would love to go to Mayo there.

@margiebanks Hi, Margie One possibility, and probably the most likely thing, is that you got Chronic Bronchiectisis as an autoimmune matter. Both Mayo and some of the papers say that CB is almost always that way. Then you pick up the bacteria through the way the CB operates. I have CB as part of my AI package, A form of Light Chain Amyloidosis. There are many forms that are possible in LCA, plus Evans Syndrome, which is a real killer. Mayo would be a good bet. You are closer there than to Emory, of course. We lived in Pineview at one time, and understand the matter of ID the bacteria is tough, because of the heat and humidity. httpjs://bit.Ly/1w7j4j8 "Amyloidosis and Old Karl"

@oldkarl thanks for your input. At this point I want to go to the sources available to meet to get the real scoop. I may have to stay in Georgia as I have Medicare 1st Georgia Medicaid 2nd (on SS disability) I have soooo much going on w my health and it would be great if it were all looked at again in the light of this recent diagnosis of bronch w MAC. And I really don't know if the pseudomas is gone. Was given Cipro for 10 days back in Feb then started the Big 3 (one at a time) for Mac. I read all I can!

@beverly1945 Hello Beverly. I am glad that you found our group. Have you had a chance to read over past posts and our 'Discussion' board?

@margiebanks Hi Margie! Welcome to our group. I am glad to see that you have been reading things that our group has posted. There is a lot of info in our pages. Do you live near Savannah by any chance? I do. I live 25 minutes from there, on the South Carolina side.

@margiebanks I live 2 1/2 hours from the Mayo in JAX. That is where I go for treatment.

I haven’t posted anything for quite awhile. My husband, who has MAC, COPD & Bronchieactasis had a flair up and was in the hospital for 9 days. He came home with an IV and I was given a crash course in giving him the infusion every 6 hours. It worked out fine for the 4 days that he needed the antibiotic. While he was in the hospital he was diagnosed with pneumonia and pseudomonous again. The pneumonia is gone but the pseudomonous is still present but not active. It must stay dormant in the body until the next flair up. Right now he is not taking any antibiotics due to the side effects. He has gained back his appetite and for the first time in over 1 - 2 years, he has gained 2 pounds. Fully dressed he now weighs 110. He is extremely thin. He is very tired and sleeps about 11 hours at night and then he takes a 3 hour nap every day. I think it is the infections that make him so tired. He has two new nodules in each upper lobe with irregular borders. Anyone familiar with this type of nodules. I am worried that he is getting cancer but we won’t know for sure until the end of November when they do another cat scan.

@windwalker I live 4 and a half hours from Savannah but only 2 and a half from Jacksonville. My little town is in the southwest corner of Georgia 45 min north of Tallahassee. The deep south! I do see where you are being treated at Mayo in Jacksonville. I really think I should go there if they'll accept my insurance, if not there then perhaps Emory in Georgia as @oldkarl suggested. My pulmonologist is super nice but....after my own research I asked for and got an Airway clearance vest. (Not much help but I keep doing) also learned from this group I asked for a nebulizer w 7% saline and that was ordered but I never got the neb because it wasn't covered by insurance and the saline was $70 a month w insurance. I've since found out more info about using a coupon at Walgreens to get the price down considerably. May be able to talk to my insurance and push it thru on Part A or B. Anyway, I really think I need to nebulize because I hardly ever cough. I need to get this gunk out!! Anyway, it's just a blessing to have found this group!

I do have a dental concern/question I haven't seen addressed in the group (or haven't come across it yet). I have several old amalgam fillings that need to be replaced. It's on "onlay" process that covers 2 -4 surfaces of a tooth. Extensive, but not a crown. What if any concerns are there for dental work w MAC? I have had a hip replacement 3 years ago (before any lung diagnosis) and one dentist always has me take Cipro the day before and after a cleaning etc. Another newer (younger) dentist said thats "old school" and not needed 3 years out. I should have probably started a new discusion thread!