I can tell you what works for me. A local pharmacist recommended an Orthomolecular brand Orthobiotic. My pulmonologist also recommended Florastore (saccharomyces boulardi- which is not killed by antibiotics) and Culturelle, which is lactobacillus rhamnosus. The Orthobiotic also contains those, but in smaller ants. In addition, she recommended a good yogurt and also a fiber supplement to help solidify stools when necessary.

I take my probiotics on an empty stomach first thing in the morning. I am also using a bovine colostrum powder that I get through my integrative health doctor. I had read that it helps to seal up the gut junctions and to keep it healthy, then the probiotics are more effective. I mix a scoop in water in the morning and have it on an empty stomach with the probiotics.

This is what has worked for me. I have absolutely no digestive issues from the meds, and I have a really sensitive system. I also try to avoid sugars and stick with complex carbs, while grains, and lower glycemic fruits, along with lots of vegetables/salads, lots of healthy fats, and high quality protein. I try not to have just animal protein and include legumes and nuts/nut butters, and even tofu. Avoiding sugars helps to keep away fungal infections.

When your gut is in good shape, you absorb and use your nutrients better and are better able to fight your infection. I had started on Clofazimine 6 month clinical trial last year. That was 4 months at 200 mg daily and 2 months on 100 mg daily. At the time, I was only on the Orthobiotic, and the Clofazimine med is tough on the GI system. I did ok and only had an occasional loose stool.

I started 18 months of Azithromycin 500 mg 3x/wk with Ethambutol 3 tabs of 400mg each 3x/wk almost 5 months ago. When I did that is the time I had added the Culturelle (1 capsule) and the Florastore (2 capsules) with the Orthobiotic. I also eat a serving of yogurt daily. My appetite is great, I have no digestive issues at all, and aside from the fatigue that started when I began the 2 new meds, I am doing well. No more weight loss, and it is easier to put on weight. Keeping your gut in good shape is the key. I get the Orthobiotic from a local pharmacy that Cassie’s the Orthomolecular products and I pay about $35 for a month supply. Not cheap, but very effective. I get the Florastore and Culturelle from Amazon. It is cheaper there than I. Most stores. Anyway, when all taken, they are really doing the job for me.

I do my 7% nebulized saline twice daily along with the airway clearance with the Aerobika. I boil my equipment after each use. I bathe now instead of showering, and I order purified water and then boil pots of it to store for drinking and brushing my teeth.

That may be overkill, but I am trying to do everything in my power to beat this bug. I also have bronchiectasis, so I know that there are going to be permanent lifestyle changes to maintain lung health, even once I finish the meds.

When I was diagnosed, I was smear positive at +2 and culture positive at +3. The Clofazimine by itself did not help me. It was a trial, and I was feeling well when I was on the 200 mg/day, but I declined and began feeling tired on the 100 mg. Clofazimine is really meant to work in tandem with other meds, but since it is very tolerable, they were studying how effective it is alone. I remember when I started it how quickly the weight loss stopped.

The good news is that, after 2 and a half months on the new meds, I became smear negative, and there are only 1-3 colonies mycobacterium on the culture. Another sputum sample after that was 0-3 colonies. I sent in my sputum after 4 months for testing, and the smear was negative, so I am now waiting for the culture results and should have them in another couple of weeks. I am very hopeful that by 6 months, I may be culture negative. If not, I will be also started on nebulized liposomal Arikayce.

I say all of this to let you know that there is hope. My measures to get and stay healthy with this disease seem pretty extensive. The probiotics and colostrum powder cost money. I cut back on non-necessities. I mask whenever I go out in public places, and I try to avoid crowds. This is inconvenient, and I get stares when I mask, but that is ok with me- much more so than the meds for so long and with their side effects and risks.

We all have to weigh what we are willing to sacrifice to maintain our lives to as close to normal as possible. We are all different, and I don’t judge anyone else’s decisions on how to approach this. I do know that when I adopted the really strict approach with the bathing and drinking water/tooth brushing water, things began to turn around for me. Maybe it just helped to prevent exposure, or maybe it is only the new meds. Who knows? But it has given me a sense of empowerment, and I don’t feel so helpless.

I hope that some of this will help someone else out there. This thing can be so overwhelming and can leave you feeling so lost. Then you get back on your feet and get your bearings. This forum is indescribably supportive and is a lifeline. Even the best doctors don’t have the time to answer all questions and concerns. On this site, you meet others with the same and different experiences, and all are so helpful.