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Wed, Jan 29 9:46am · Early Christmas gift - stopping the "Big 3" in MAC & Bronchiectasis

@susan1962
Sue I also am on a drug Holiday. My first day off was 12/24/2019.. I developed sudden onset of tinnitus and dizziness in November. Things started to improve when I was still on the meds in December but they decided to try me off since they could not be certain it was not the meds. Things have been improving and I was just at Mayo yesterday. My CXR is stable. I am to try staying off the meds and return in May/June. They really are not sure if this was a virus or the meds (since it was starting to improve before stopping the meds). I did allot of praying which I believe also was a great help to me. We discussed new research while I was there. Dr did not think the Nitric Oxide is moving forward as they thought. He is very excited about Phage therapy. I sent an email to the program they had on Sirius XM yesterday with Dr Radio and they never put my question on. I would have called but it was when I was at my appt. Not many pts called in either, which was disappointing. There was one MD that called from the UK with information about an article published this week in Scientific Reports with a 3 part drug regimen that is working well in children with MAC and Abscesses. Imipenim Relebactam and Amoxicillin https://www.nature.com/articles/s41598-020-57844-8 Lets hope we both do well off the drugs

Oct 15, 2019 · Out of network coverage at Mayo for MAC in MAC & Bronchiectasis

@rmason I did. I had to have my Pulmonologist right a letter that there were no specialists in out current network for treatment of MAC. He recommended Dr Aksamit at Mayo. I sent that to my insurance and apparently they needed to respond in 15 days. They did respond and I was able to see Dr Aksamit.

Sep 26, 2019 · Pneumococcal Vaccinations against pneumonia in MAC & Bronchiectasis

@alleycatkate I got both vaccines before age 65 due to being at higher risk for pneumonia. I think it has helped with preventing some illnesses when around the Grandchildren

Aug 30, 2019 · 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.

Aug 23, 2019 · 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.

Aug 22, 2019 · 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

Aug 21, 2019 · 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.

Aug 21, 2019 · 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.