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Posts (427)

Fri, Aug 30 9:36am · Supplements and the Big 3 in MAC & Bronchiectasis

@tinaesims I started out the same. Positive cultures and really no other symptoms. They watched it for 2 years then when there were changes happening on my CT, they started the meds. I wished that they would have started them sooner before the changes showed on my CT. Now I am having a harder time getting rid of this. I was reading about NAC and L Glutathione. I am not sure if that will interact with the Big 3. I am now taking them daily. I do take Probiotics at least 3-4 hours after my dose. I do take Vitamin D. My ID MD told me if you want to help your immune system that is about the only Vitamin he would suggest.

Fri, Aug 23 1:43pm · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

@jeanern01 I just returned from my first visit at Mayo in Rochester with Dr Aksamit. He was very kind and spent at least an hour if not more with me. The whole place is a bit overwhelming when you first walk in but everything is well marked and bring good walking shoes. It was a bit chilly so make sure you bring a sweater. Plan to be there for 3-4 days. I think everyone should be evaluated at least once at a large center with the most experience and expertise.

Thu, Aug 22 7:58am · N-A-C and apo-Lactoferrin helping MAC and Bronchiectasis in MAC & Bronchiectasis

@kathyhg I would be afraid to add these things to the "Big Three" again for drug interaction

Wed, Aug 21 12:07pm · In shock after MAC diagnosis in MAC & Bronchiectasis

@sylvermoon8 The diagnosis is a blow. It is hard to know that you may have a chronic condition. I have had all the tests more than once. Generally I do not have allot of symptoms. I wear a mask in the Garden N95 type now. I am being changed from three times a week to every day (smaller daily dose of Azithromycin and Ethambutol and same dose of Rifampin. Have many of you made that change? If so how, did you notice much difference? They told me that if anyone is on any type of estrogen replacement, it could make it less effective. So for post-menopausal people like me it may make the cream less effective. They said it can also strengthen beta blockers.

Wed, Aug 21 9:09am · intermittently testing positive for MAC in MAC & Bronchiectasis

@128128terry11t I has negative sputums but my last CT showed return. I made appt for Mayo in Rochester. The place is huge. I am there now and saw Dr Aksimet yesterday. He spent allot of time with me. He told me many cases are reinfection. He is changing how I am taking my medications. Sent me for some other labs, XRay, tried to get a sputum. Having a swallow test and had a Rhinoscopy. I will I would have pushed my Pulmonologist for the referral sooner. I had to send a request to my insurance to cover the Mayo visits as in network sine there was no real "NTM" specialist in my Network.

Fri, Aug 9 9:07am · I am new to Mayo and have my first appointment on Aug 5th. in MAC & Bronchiectasis

@jammer I go for my first appt at Mayo on August 20th. I have been on the Big 3 now for about 20 months. My current Pulmonologist and ID don't know what the best course of action is right now. So, I told them I needed more answers that I just am not sure what to do next.

Thu, Jul 25 8:32am · Losing weight due to MAC in MAC & Bronchiectasis

@flib Are you on treatment?

Tue, Jul 23 9:37am · MAC nodules in MAC & Bronchiectasis

@bibes I have been treated for MAC for about 19 months and have had it for 4 years. I have nodules. I had biopsy in 2015 and in April of this year. I have my first Mayo apt on Aug 20.