← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Replies to "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..."

The best thing that happened to me was switching to a medical university Shands in Gainesville who still treat me but referred me to National Jewish in Colorado. I live in Fl. My first visit was for 10 days where they run tests on you from early morning until 4 or 5 at night. At the end of all testing it was determined I would be a candidate for a left lingula lobectomy and later a r middle lobe. Both of these areas now had M abscessus and were damaged from the bronchiectasis. Neither was working they were actually dead tissue. One they were removed it removed most or all hopefully of the disease. The surgeon I had was Dr John Mitchel of the University of Colorado. He is a well know surgeon who specializes in VATS surgery which is less invasive.
National Jewish is the top know hospital for Mac.as well as oter lung issues. I flew there by myself to save money on airfare and hotel costs and the hotel had a van that took you back and forth for free. I know this seems expensive and alot to do but it is your health we are talking about.

Yes…I have RA, and pulmonologist now suspects I have MAC…getting bronch on Tuesday although unsure if such an invasive dx tool necessary without doing a sputum first…checking on that… I live in Tampa and can find no good docs here…really have to travel to Gainesville for top notch doc for this infection?? Or CO…or MN…?! Does everyone here know that no meaningful research has been done on this infectious disease, and the same approach to treatment has been used for at least 20 years? Sheesh…And that’s in spite of the significant increase in cases. I, too, have extensive reservations about taking so many heavy antibiotics…with such ridiculous side effects. I live alone so must be able to function. Anyone here in FL want to share a trip to Gainesville with me? ­čÖé

Hi @dixer…may I ask who was your initial Dr at Nayl Jewish Hospital in Denver…I began the process to becoming a patient today…and would love to know more from someone who has been there. Thanks and hope you are doing ok Terri

Dr Wendi Drummond. Very knowledgable and very kind.

We’re do you live in Florida I live in Naples Florida

Yep..I’m eavesdropping sort of.received this as we all do with post on
discussion board.wanted to respond as I live in the Tampa Bay area.

Terri

I live in ocala FL

I live in the Brandon/Litha area. Do you have this disease

I too have been diagnosed with Mac. I’ve been on meds for six months. I had a CT scan few weeks ago. Dr really didn’t give me a straight answer if the same or worse. He was more concerned with my PFT test stating my chest was a lot tighter which I haven’t noticed. How soon can you tell if meds are working? Do you see an infectious dr in addition to a pulmonary dr?
I’m wanting to find someone who specializes in Mac. I live in Lake Mary Fl

Cathy, there are quite a few Floridians on this forum who can make a recommendation. I’m tagging @dixer @boomerexpert @coylemel333. You can also call Mayo Clinic Jacksonville for recommendations http://mayocl.in/1mtmR63

If asking me, yes.

Hi, I have a question please. Do you cough a lot if you have MAC. If you do is the sputum clear and thick?