... Hi..how are you now? I also live in Hawaii and was just diagnosed with MAC..interested in knowing how others cope. Thanks (1 replies)
... I contracted MAC through my `Hot Tub' or Spa nearly three years ago. At the time I could not stop coughing was diagnosed with pneumonia and later after a lung biopsy found the Mycrobacterium Avium virus, I had the condition of `Hot Tub Lung'. That was three years ago. Each time I come down with a cold I end up with congestion on my lung. Ordinary antibiotics do not work in... (9 replies)
... I had Mycrobacterium Avium surgery about four years ago, to remove a very small infection on my left lung. At first it was thought to be Cancer, so I was pretty happy that it wasn't. ... (110 replies)
... Hi all , I'm new, I was dignosed in Sept. 2005, Bronchiectasis, Mycrobacterium avium complex. ... (237 replies)
... I have just been diagnosed with Mycrobacterium Avium Complex I was put on three soughts of daily medication. ... (237 replies)
... I know the battle that you are going through. I was taking 3 kinds of antibiotics, totaling 2400mg. a day. I took probiotics for my stomach/ intestinal problems twice a day. I took them for a year and a half. I lost 28 lbs., and, at times, felt like just throwing in the towel and giving up. However, God saw me through it, and, in the end, I came out a stronger person from... (2 replies)
... Hi, Im a 31 year old female who was just diagnosed with Mycobacterium Avium Complex, my ID dr thinks its because he thinks I have what is called Lady Windermere Syndrome(?). I was diagnosed with MAC in May 2013.
I have always had lung problems when I was 17 I had my first pneumothorax(collapsed lung) and they put in a chest tube, 11 days later I was released from the... (2 replies)
Are you under treatment?.. If so, Have they done sputum testing to see if the MAC is still active? My understanding with all this, and mind you Im new to all this also is, If under treatment and the MAC is still possitive in sputum or bronchoscopy biopsy after 12 months that it is concidered treatment failure, and a new treatment plan is advised. What kind of... (1 replies)
... Gram4, look up MAC (Mycrobacterium Avium Complex) and NTM (Not-tuberculosis Mycrobacteria) and you'll find a wealth of information. Generally this is a disease of slim over 50 caucasian women but I know men who also have the disease. Symptoms vary for individual, mine were generally not feeling well, no appetite, weight loss and fatigue which prompted an X-ray and then a CT... (45 replies)
... Have any of you read in your research on mycobacterium avium that replacement hormone therapy is thought to be helpful or harmful in the outcome of the disease? ... (169 replies)
... specialists I finally got a diagnosis of Mycobacterium Avium Intracellulare. ... (169 replies)
... Hi all, I haven't checked for new messages for awhile. So great to have so many MAC patients sharing information here. For FeFe and Allegra, the chest symptoms you mention may be related to GERD. Many people who have MAC, also suffer from reflux. I have had the tight chest and chest pain so bad I was really scared and thought it was my lungs. My pulmonologist said it was the... (169 replies)
... I have bronchiectasis and Mycobacteria Avium in both my lungs. My right middle lobe was removed in 2002. My CT in 2004 showed a small cavity in my right upper lobe. ... (110 replies)
... Hi Kathy's son, so sorry your mom is having such difficulty. Sadly, I don't have many answers to your questions. I can't believe your mom hasn't had a lung scan. It shows so much more information about the lungs than an X-ray does. Sure sounds as if Kathy needs a referral to another Pulmonary specialist. Most of us who have MAC also have Bronchiectasis. That could be... (237 replies)
... Sharon, good luck in Denver! I'm so pleased for you that you are going to NJH and look forward to hearing about your experience. Ann, it seems like a long time since we have heard from you and am anxious to hear how you are doing. Kathy, I wonder if you found the site I wanted you to by doing the NTMinfo search, another good source of information. I have connected with a... (237 replies)
... Yes, weight loss is a symtom of this disease. I didn't lose weight but most people do. Exhaustion, shortness of breath, coughing, weakness, coughing up blood, night sweats, fevers, are all symptoms of this disease. I had the exhaustion, shortness of breath, & generalized weakness. But looked like the picture of health, I guess that is the reason the doctors would listen to... (237 replies)
... Hi everyone,
I just skimmed through a few posts and one that hit me was the following.....
grammy1954 06-02-2004 10:42 PM
Re: MAC ?(Mycobaterium avium complex)
Yes, I have MAC. Finally got a definite diagnosis of this disease today after going to 3 Pulmonologists in the past 15... (237 replies)
My name is Lee and i was wondering if someone could explain to me about Mac,i fully don't understand it.for the past couple of years i have had shortness of breath alot,extreme fatigue and alot of plegum i cough up in the mourning when i first get up.here latley i have had ocassionally bright red blood that comes along with trying to cough it up.i think that is because i... (1 replies)
... Thank You!! I really appreciate that and Im glad everything went well for you, thats great news!!
I know how you felt when he said "you don't look like a MAC patient" I get that a lot too. You know, I wonder what a MAC patient looks like?! Ha.
Im actually thinking of getting more opinions, I just feel like I would feel better with another lung dr other than the one I have... (2 replies)
... I was right he was doing the minimal amount of meds. Turns out I have The mycrobacterium avium intrecella. So it creates cavaties through out the lungs. Weakening them even further. ... (6 replies)