MayoClinic.org
In shock after MAC diagnosis
I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot…have been doing it for years. This year we had a new mulch supplier…… I could use a pep talk, if anyone has that for this!!
@ling123 @windwalker My story is very similar to ling123 symptom wise-except my ID doc put me on the big 3-I did not tolerate rifampin which the cultures showed were specific to my MAC. After a year on the other two, cultures still positive. I cough some, but work full time, exercise daily, and can hike in the mountains! I’m going back at the end of the month to ID- I will not go back on the meds at this time.
And yes-I’m an avid gardener- now raising Monarch 🦋!
@rmason I'm glad to hear that you are leading an active and interesting life despite being tested positive for MAC. From what I have learned, people can be positive for MAC but can still live a normal life and not have symptoms without being treated with antibiotics. MAC are such ubiquitous bacteria that it is very hard to live in an environment where they don't exist. The bad news is that for those who have other health issues that cause their immune system to run down, MAC infection will make their conditions worse. If you are otherwise healthy, like myself, the important thing to do is to be vigilant and work with your doctors to make sure that your lungs stay in good shape and there are no other medical problems that may affect your immune system and your general health. Hope everything goes well with you and the monarchs are thrilling under your loving care.
Now, they want me to go on clofzimine. Has anybody been on this? The side effects are frightening!
My cousin's husband had a double lung transplant at Barnes in St. Louis. He is doing great and it's been about 5 years. Unfortunately, his wife died of colon cancer because she ignored all the signs while taking care of him.
@tinasims, Hi Tina. That is good news about your cousin's husband doing so well after his lung transplant. They have certainly come a long way over the years with that. It is sad about his wife though. That is pretty common for caregivers to neglect themselves though. For one thing it can be very exhausting & stressful lcaring for a chronically ill person. As we all know, stress can also bring on illness. (As for colon cancer, it can come on with zero signs, that is why colon screening is so important.)
@rmason Raising monarch butterflies! How do you do that? Can you post a photo? That sounds amazing.
@kp5450121 Hi Karen. How are you doing today? I am sorry for the delay in getting back to you, but I have been battling the flu or some sort of bug for the past week. The good lung transplant place in Ca., is at UCSF Medical. They have exceptional long term survival rates of lung transplantees. I am still trying to connect with a man in Ca to find out exactly where he went for his. He was initially turned down by just about all hospitals to do his transplant because he would not change his lifestyle (heavy drinking) One place did agree to do it for him, and he is still doing good after 13 yrs. I do not know him personally: he is a brother to a friend of mine up in N.Y. Have you made any appointments since your last post?
Could I please get his name if he would contact me,I REALLY need
TRANSPLANT,I have no life for now you can private message me. Karen HARRELL I
GOT COUPLE OF QUESTIONS FOR HIM. Thank you so much and thanks for
remerbering me. Sorry you been sick.
Just wanted to pass along that On Sept. 2 I was asking what "toby" was short for. Now have begun nebulizing with it. I had my first sputum results come back after starting with a different doctor in August. My sputum shows it is "growing a lot of Pseudomonas. There are 3 different colonies of this bug in your sputum, and 2 of them are resistant to Levaquin." I had been given Levaquin for Pseudo. A. this spring after bronchoscopy and thought it was gone because cough completely disappeared. Not sure if it was gone or just suppressed and came back. The specimen sent in a few weeks ago was the first one I was able to produce since spring. My doc had ordered the antibiotic cefTAZidime 2 gm injection (IV) every 8 hrs which I began yesterday after getting a PICC line placed. I will self administer the IV ceftazidime for 14 days and inhale the Toby for 28 days. Next will submit sputum to be checked. Has anyone else had experience with this treatment?
Hi, everyone. I have a question. I have nodular MAC disease and my only symptoms are shortness of
breath and fatigue. I walk two miles every morning and am 86. That said, I have bad allergies. And I
get nasal congestion, debilitating fatigue…even chills and aches. I am wondering if an allergy attack
can trigger MAC symptoms? Thank you and best to you all. Elizabeth
My guess Elizabeth is that it’s not so much that it triggers MAC symptoms, but that your immune system is under attack with allergies and that in and of itself gives MAC an edge. MAC is an opportunist infection and will use any “opportunity” to make itself known. I am 70 fighting this and think you you must be one strong lady at 86! God bless you real well. (Irene5)