Well, I was started out on a clinical trial with Clofazimine only. It was 4 months on 200 mg once daily for 4 months and then 2 months on 200 mg daily. After 4 months, my MAC numbers were cut in half, and my sputum smear was negative. After being on only the 100 mg for a few weeks, I started losing weight again and produced more sputum. I had not had any hemoptysis in the 6 months on the trial, and it returned afterwards. My doctor did not have access to the closed trial results, but she followed me herself with monthly sputum samples and labs every 3 months.

Since it takes about a month for the cultures to come back, I won’t know how strongly the MAC returned or progressed until then. I did not e left a cure from the Clofazimine, but I also did not expect progression. The CT scan showed a little more nodularity and bronchiectasis, but I had a short-lived other infection for a few weeks that was treated with Augmentin successfully.

I am now on MWF Azithromycin and Ethambutol. Dr. McShane has me taking all of it at one time just before bed and then just going to sleep. She said her patients seem to tolerate that.

The nurse has me taking daily over the counter saccharomysis boulardi and also the rhamnosis probiotic, along with daily yogurt. They are available on Amazon and apparently withstand the effects of antibiotics. The good quality yogurt provides strands that the 2 individual ones don’t.

If, after 6 months, I don’t become culture negative, the doctor will start me on Arikayce (so) in addition. She said they used to worry about not doing the 3 meds that included Rifampin, but they found patients did well on the 2, and for any who did not convert, the Aricayce took care of.

The scary part for me is that if I use the nebulized Albuterol or the puffed version, I have to do it very minimally only before the 7% saline. Otherwise, I get hemoptysis from out of the blue. I was in the ER the other day because it was pretty copious.

My appetite is good, I sleep well, and I try to walk briskly for 2 miles a day. My husband had a stem cell transplant 7 yrs ago for primary amyloidosis and is still in remission, but the procedure so damaged his kidneys, that he is now close to dialysis, so we deal with that and all his dietary restrictions. So, it is a lot because I have been the caregiver and always so healthy. Never got sick, so this thing is tough because the treatment is lengthy. The bronchiectasis is the underlying issue, and it does not go away.

I still mask when I go out and have been able to avoid most other infections. I eat a crushed clove of raw garlic every day. This also helps to prevent fungal infections, along with low sugar.

It is important to eat very well and healthy and to get good rest. Get lots of antioxidants, good fats, and good protein. It will make you feel better and be more resilient.

This group is wonderful, and I, too, appreciate all the support and information.

Yes, I hope that you can get to TX to be seen!

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