... 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 was diagnosed with NTM last year and was unsuccessfully treated with multiple TB & non-TB antibiotics (moxifloxacin, linezolid, clarithromycin). NTM specia was identified recently and it is M. Abscessus. Doc informs that response to the treatment for Abscessus in elderly (i m 60) is poor and there are side effects like deafness in its treatment. The treament involves oral &... (1 replies)
... antibiotics for 18 months. Recently diagnoised with Pseudomonas and Mycrobacterium Abscessus. ... (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)
... 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 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)
... 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)
... I have just been diagnosed with Mycrobacterium Avium Complex I was put on three soughts of daily medication. ... (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 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)
... 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)
... Hi Daph, It is my understanding that MAC (specifically Microbacterium Avium Complex)is one of the bacterial lung infections that can actually be cured. I once read the cure rate was between 30 and 40% specifically for MAC itself, but recently read the success rate was higher. I'm more inclinded to believe the smaller numbers. One of the big problems after having MAC is that... (73 replies)
... o be rid of the IV. My pulmonologist wants to repeat the lung scan in four weeks. Probably the only way to see if the infiltration is from the Pseudomonas or the Mycrobacterium Abesscus, though both are present in the lungs. ... (73 replies)
... Found out yesterday the second bacteria though related to the MAC is different, it's Mycrobacterium Abscessus. Not sure what will happen with that one yet. ... (73 replies)
... Connie - I, too, have bronchiectasis and MAC. Have you ever been tested for MAC? So many of us who have MAC also have bronchiectasis. I have been to National Jewish in Denver and I was told there that you have to clear your lungs every day of all the mucous. I use the Acapella. I have found that I have the best luck laying down on the bed using it first on one side... (9 replies)
... I'm a newbie and Canadian so please bear with me. I was diagnosed with Bronchiectasis about 6 months ago. It was discovered as a result of 2 false positive TB test. I have been taking antibotics for the entire time (cipro, levequin, Biaxin 500 XL etc) and Hycodane cough syrup (does nothing but help me sleep) and I have the acupella (breathing thing that don't help). I guess my... (9 replies)