I was diagnosed with Mac the 7/52015. I am on 3 antibiotics (2700mg) per day. I want to know when will I stop feeling so tired? I struggle to eat. Abdominal pain, nausea etc. when I try to clean the house I struggle to breath.

I took Calcium D Glucarate once a day. I do not know why it worked but it did. It was not recommended by a doctor but a friend who follows alternative medicine. I was successfully on 3 drugs for 16 months. I did lose about 10 lbs but my appetite improved and I started to feel better after taking the above mentioned calcium D Glucarate which I bought at a local health food store. It is worth a try as I too felt terrible during the first month.<br />
<br />

Thank you so much for replying, I will defnately give it a go. I don't
think anyone knows what it feels like. I hope I don't have to take the meds
after 12 months anymore.

Well, I do know what I felt like and it was pretty awful but I think not as bad as chemo. I would go back to bed at 11 am as I just did not feel like getting off the couch. But I think as time goes by the body adjusts somewhat. Hope the calcium D Glucarate works.<br />
<br />

Hello BLC and Maryke and Jill,

I was diagnosed with MAC about 7 years ago.- also known as NTM for Nontuberculous Mycobacteria - see info here: http://www.nationaljewish.org/healthinfo/conditions/ntm/
(I'm not Jewish but this is a good site.) See my post above from March 2013.

I am on the regime of the standard 3 antibiotics. Originally I took the drugs EVERYDAY and I barely tolerated them. Was nauseated, occasionally throwing up, lethargic. My pulmonologist told me about several of his patients with MAC and what they do to overcome the side effects of the drugs. He told me to 'find what works for me', to feel better on the drugs. I tried taking them at night, or in the morning, after eating, before eating -- lots of different things. Taking them 1-2 hours before I went to bed, after eating, seemed to help the nausea. After 18 months, I got a new fabulous pulmonologist - an expert on MAC. I gradually felt better. After 3 years, I was going out of the country and negotiated with my doc about going off the drugs, which I did. But after 6 months I was really ill again. Was put back on the drugs but this time taking them only 3 days/week. Been doing it ever since with little side effects. I take them with orange juice when I get up in the morning, and tolerate this just fine now compared to taking them every day! For me, I'll most probably be taking them for the rest of my life. I've had 2 lung biopsies and one lung lavage (wash) over the past 7 years, to see if things have spread.

Besides the drugs,MY DOCTOR RECOMMENDED SEVERAL OTHER THINGS I need to do to help myself feel better. (1) Get some form of exercise to get my lungs expanding -- Yoga or strenuous walking or Pilates, etc. I tried Pilates after being diagnosed seven years ago and have been doing it 2-3 times a week since. This definitely gets my lungs expanding, as I cough when doing Pilates - which is a good thing! I also get out and briskly walk when I can. (2) Plenty of rest -- getting warn down is really easy with this disease. And getting enough rest (whether it's being asleep or merely resting) is important. (3) Get enough Vitamin D, since there is a connection with this and MAC - doctors don't yet know what the connection is.

Also, have your eyes examined early by a very good ophthalmologist. One of the drugs can drastically affect your vision. And have your blood checked regularly, per your doctors orders, since your body is filtering these drugs which can cause liver or kidney issues.

Hi Jill<br />
Thanks for the info. I am going for my CT scan in 2 weeks time, then<br />
the doctor will tell be if I can start doing some exercises. It feels<br />
like someone has broken my chest bone and rib cage. Luckily I don't<br />
cough that much after I started on these antibiotics. I have been<br />
sick for 5 months before I got diagnosed. I also drink my meds with<br />
orange juice. I split my meds in 2. I take 500mg in the morning and<br />
the other 1800mg at night. I struggle to eat and try not to eat after<br />
6 at night and nothing to heavy. Sometimes I feel fine (as fine as I<br />
can feel) and then I am so tired my chest pain, and my ears ache my<br />
neck ache. It feels like I want to roll in a ball and climb in a<br />
hole. I feel blue and bruised. But I think I am starting to cope. I<br />
am a housewife and my in-laws moved in as I was diagnosed, so it still<br />
feels a bit weird for them to do everything. My mother in-law says I<br />
should leave the medication and go the herbal route. I am to scared,<br />
because I don't want to take a chance.<br />

Definitely not the herbal route only. It sounds like you were very advanced by the time they figured out what was wrong. I think it is hard to cure MAI and many people probably do not stick with it long enough to be cured. The herbal remedy might make you feel better but it won't cure the condition. Let your mom-in law help and tell her how grateful you are. Hopefully, in a few weeks you will feel better. <br />
<br />
<br />
<br />

Maryke, I agree with Jill - not the herbal route only!! Per my pulmonologist, it's much easier to cure TB than MAC - - can cure TB in six months on the drugs. MAC is a stronger form of the bacteria. So take your prescribed meds. I too felt like an elephant on my chest ... but after a year on the drugs, that feeling subsided and now occurs when I'm in hot, humid weather. You really do need to 'baby' yourself along the way with this. It's nothing to fool around with. Your in-laws can be a real help to you. Thank them for their help and care! Try to walk, exercise, build up your strength in your lungs and chest. It does take time so pace yourself. Blessings to you and Jill.

Paula Stroud

How are you doing now? Are you still taking the meds?

I am doing wonderful! No meds after the year of treatment . I do believe I<br />
would have died without them. I could not even shower myself. Had no energy<br />
and would fall into the bed each day after work. The treatment was rough<br />
but it killed the spores. Took me awhile to get over the treatment if<br />
antibiotics .<br />
<br />
-- <br />
<br />
*Deby *<br />