I thought there was only one drug cocktail that works, Rifabutin, Azithromyacin and Ethanbutol. Are these 2 that you are taking for the MAC? I wonder if they are easier on your system. i have to take 6 pills a day. The infectious disease specialist at Mass. General said she wants me on them everyday! I know that would kill me. I'm going to ask about those

@unicorn .. Christa The standard treatment for MAC IS the "Big 3" .. PLEASE keep in mind .. the Members on our wonderful supportive community are NOT doctors .. are ONLY speaking from their own personal experience .. you MUST listen to your OWN Infectious Disease doctor .. EDUCATE yourself .. advocate for yourself .. BUT form your OWN decisions based on INFORMED educated information .. we are NOT doctors .. just trying to support you. Sending you a Big Hug! Katherine

from my File Cabinet:
ANTIBIOTIC ..STANDARD TREATMENT Standard treatment of MAC recommended by the American Thoracic Society (ATS) is a combination of 3 or 4 drugs approved by the Food and Drug Administration (FDA).
The drugs include:
Clarithromycin (Biaxin) or Azithromycin (Zithromax)
Rifampin (Rifadin) or Rifabutin (Mycobutin) + Ethambutol (Myambutol)
Streptomycin (Strep) or Amikacin (Amikin)
The first three drugs are pills/capsules and may be given daily or three times weekly (Monday-Wednesday-Friday).

While taking these medicines, routine laboratory tests to check kidneys and liver along with a complete blood count (CBC) should be performed, at least routinely for the first six months. Patients who fail therapy after taking the 3 standard medicines (clarithromycin/azithromycin, rifampin/rifabutin, and ethambutol) are usually required to take additional medicines.

**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack
ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.
BEST Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel "lousy" the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!
From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut - the antibiotics wreak havoc with the gut. This can help with nausea - I take my probiotic with breakfast or lunch - do not take it late in the day. I use Ultra Jarro-Dophilus - 50 billion per capsule - will find in the frig at any health food store - I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts - they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela
OR @lindam272,Linda The Rifampin gives me the most trouble of all the meds. I take 2 Rifampin and a Digestive Advantage probiotic all at once with a full bottle of water when I first get up in the morning. By the time I do my breathing treatment and get ready for my day, an hour has gone by and I have a light breakfast. I was taking the Zithromyacin with breakfast but it was giving me heartburn, so I pushed it out another hour which has helped. I take the Rifampin between 6:30 - 7 a.m., the Zithromyacin at 9a.m. and 3 Ethambutol between noon and 1:00 when I have lunch. What I like about the way I'm taking these meds, is that I'm done by noon or 1:00. I can then take my vitamins and other supplements with dinner which is a good 4 - 6 hours after my last MAC med.

GOOD INFO: http://maclungdisease.org/frequently-asked-questions https://www.ntminfo.org/faq/glossary
GOOD INFO: journal article led by Mayo Clinic's Dr. Timothy R. Aksamit. http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext

I understand that Katherine, been battling this for awhile, but It's good to know what works for others. The big 3 are not really an option for me anymore for any length of time. I need to find alternatives, maybe even experimental.

@unicorn .. Christa .. only YOU can make your own medical decisions! Hugs! Katherine

Providing that one is dealing with MAC infection alone. (Mixed infections with MAC and TB do exist) –
the use of Rifampin, ethambutol and azithromycin and sometimes occasional amikacin by nasal insufflation (depending upon your doctor’s judgement) seem to be the best alternatives.
However the gastric mucosa must be taken into consideration in such long-term use of oral antibiotics and other supplements. And often this cannot be solved by merely taking medications after meals.

Agents to prevent irritation/erosion/ulceration of the gastric or duodenal mucosa from such long term use of medications, all of which land in the stomach include ranitidine, Nexium, and sucralfate.

@katemn Katherine, when I was first diagnosed after the big scare of a bloody overnight stay in the ER, I did ask "why me?" and was envious of everybody who did not have this illness. But I quickly stopped feeling sorry for myself. Like you said, we need to focus on what we have and appreciate how blessed we are. There are so many people in this world who are much worse off than us. As long as we understand this, we should be OK.

@internalmeddoc, I think you are on the wrong Forum .. perhaps you need to be on a professional medical Forum? This Mayo Clinic Connect is geared toward PATIENTS dealing with our OWN MAC/MAI journey .. sharing our own PERSONAL experiences .. supporting each other with our OWN personal issues and questions. NOT dueling each other with medical opinions. AGAIN, you have NOT stated JUST WHERE you do your medical research .. NOR do your medical work to validate you stated medical opinions. Best regards. Katherine, Volunteer Moderator

@unicorn I was diagnosed in September 2014 after coughing up a very large amount of blood and an overnight stay at the ER. After that no more blood for over a year until earlier this year when I had a cold and laryngitis. But the blood was much, much less the second time. I only reported to my pulmonary specialist afterwards and did not go to the hospital or the ER. It was very scary the first time it happened because of the amount of blood and also because I was worried it was either TB or lung cancer. Now that I know what I have, I was able to deal with the second time much more calmly. Like you said, there is nothing they can do anyway. Knowing what I'm dealing with takes away the fear factor.

Hi Ling: thank you, helpful. Yes the first time very scary. I actually do feel better talking on the forum. So funny, when it happened yesterday, I took shower, cleaned house, fed dog, left extra water, unlocked everything, even did my toenails. Thought to myself, I am clean, I am ready, do your worst!....Then when nothing happened, I said, oh phooey, I'll take stupid pills. I can already feel them in my gut! I think I'm going to try just taking them twice week instead of 3 times. Don't see docs for a few months, it's an experiment. Maybe I can slow down growth a bit. Katherine said to keep exercising, good advice, though I thought I had an excuse to stop! haha. Anyway thank you all for support. It really helps a lot!

With understanding the impact of the meds on our systems and our feelings about that, when we start and stop the meds periodically, I think there is a high chance of MAC becoming resistant to them.