← Return to Anxious 23 year old male with MAC
DiscussionAnxious 23 year old male with MAC
MAC & Bronchiectasis | Last Active: Sep 22 8:42am | Replies (64)Comment receiving replies
Replies to "Hi all, thanks so much for your thoughtful comments and advice. It makes me feel better..."
I have been seeing Dr Kamelhar for NTM and Bronchiectasis for 4 years.
He is an expert and does not rush to antibiotics . He will follow you very closely and treat accordingly
@desk12111 I have not read all of the responses to your good and detailed first post.
I will tell you that when I was at National Jewish in Denver the lead pulmonologist said to me that there have been people, adults, who were tested for Cystic Fibrosis with their visit to National Jewish because of some of the same things you and many of us have gone through to find out what is wrong. He said that there were adults that have gone through the test for cystic fibrosis and then nexpectedly had to be told that they in fact had Cystic Fibrosis or were a carrier for it. I would imagine the doctor at NYU will suggest the CF test for you to hopefully rule that out.
Many of us had a hard time finding out what our problem was so we understand all you have done for yourself seeing all the doctors and going through the tests and why many of them came back negative or, also, having different opinions of one doctor to the next. Very frustrating.
We will want to know how you are doing as you continue your journey, as it is a journey that most of us, one way or another, had to take.
Barbara
@desk12111 Hi there. First of all let me say I am sorry you have this. With that said you need to make lemonade from this lemon!! You are fortunate to live in NYC where you have the best physicians available to you. Unless I missed something, I am not reading you have seen an infectious disease doctor. Find one!! You need a team of both types of doctors. What I have gleaned from reading your post is you have asthma and have used inhalers for years. Unfortunately, new evidence suggests inhaler use encourages the introduction/growth of other unwanted pathogens. My suggestion to you since you are in NYC is to find an ID doctor. I’m sure your pulmonologist will suggest one. They can work together on your behalf. Be mindful of your diet - a Mediterranean diet is best. And vitamins ABCD and zinc. I am a mom to ten aging in range from 20 something to 50 something! ( same husband):). There is so much online now that my children have access to like chat whatever:) it is called that is helpful. You are blessed to live in NYC. One of my kiddos lives in Monroe, Ct., and he and his family go to the city all the time. Get yourself an ID doc to be part of your team. New York has the best doctors! You will find immeasurable support on this site. Best! Irene5
Connect

@desk12111 Welcome to Mayo Connect, as you have already seen, our members are very helpful.
It sounds to me like you have found your way to excellent health care, and should be able to rely upon their advice.
Let's talk a little about MAC and why you have it - you have several risk factors - prior infections, sinus issues, long-term steroid use (suppresses the immune system) and sleep apnea. In all of the testing, were you tested for eosinophilic asthma or Cystic Fibrosis? With sleep apnea, do you use a CPAP or BiPAP device? If so,it needs to be kept scrupulously clean to avoid introducing sinus and lung infections. Finally, MAC is everywhere in air,soil and water, so most of us have no idea where we got it.
I think you can continue to seek care with the specialists you have already found.
We are always here to answer your questions.