(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@ilgrp4e .. Carmen, Rifampin frequently creates issues .. exactly WHICH antibiotics is she taking?? Below is what I show as recommended as "Standard". Do you see and 'ALTERNATE"?? Hope some of this helps! Hugs! 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 (such as injectables or “shots”) which may be effective. For extensive or severe disease, or disease that has failed therapy, the injectables streptomycin or amikacin are often added for the first 2 to 4 months of therapy.

ALSO DID YOU TRY THIS MED SCHEDULING?
SCHEDULING ANTIBIOTICS 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

Barb, when you say you are coughing a lot, we all understand - been there ourselves. Do the doctors have you doing regular airway clearance, using saline in a nebulizer to loosen the mucus, then airway clearance techniques to loosen it?
This has helped keep a lot of people in this group healthy enough to avoid antibiotic therapy, and reduced some of the constant coughing.
Here is an excellent webinar on airway clearance by Dr Pamela McShane, an expert in treating Bronchiectasis and MAC:

I have had MAC/MAI for almost two years now and under the care of Mayo Jacksonville as well as an ID Doc where I live. I have had bronchiectasis for a number of years. Last February I stared the big 5 and the side effects were so bad I could only last until April. I lost 20 pounds (and I am thin to start with), had constant vomiting, no energy, slept 12 hours a day, etc etc. I have now been off all antibiotics since then and am only doing air clearance therapy including nebulizer and percussion vest twice a day. Having trouble putting the weight back on, but have my energy and appetite back and trying to get as much exercise as my 86 year old body can get. The cough is relatively constant but I am able to bring up lots of mucous on a regular basis and that is a good thing. I rather live my life this way than feeling as bad as I did while taking antibiotics. There may be a better way but haven't found it yet. Will visit with all Docs again this fall and see if they recommend anything new. Anxiously awaiting the release of the new bronchiectasis medicine which is currently awaiting final approval tab the FDA. This probably won't help anyone but that is my status. PC

Hi fellow MAC patient,
I am taking the BIG three now ( just adding the Rifampin today) and wanted to know if you take all three antibiotics at night or if you take any with breakfast?
I am finding that the probiotics , esp the good ones are quite expensive. Do you order yours on line? Thanks for your input,
Lynne

I have saline to help clear mucus. I also use mullein & NAC twice a day to help clear mucus. I do 4 levabuteral nebulizer treatments a day to help clear mucus and 2 budesonite nebulizer treatments a day to help clear mucus. But I will listen to the video...I will do anything that might help..... thank you.