Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (419)

Fri, Jul 5 8:48am · MAC and "Stabbing" Back Pain in MAC & Bronchiectasis

@sueinmn I was on the Big 3 for 17 months and had the same thing happen. A new spot. I had a biopsy to confirm the spot was MAC It was a Granuloma but did culture MAC. Then they sent a susceptibility test to make sure it was still sensitive to Azithromycin.. Have they sent any susceptibility tests for you? I am still on the same regimen and going to get an opinion at Mayo in Rochester.

Thu, Jun 27 8:49am · Newly Diagnosed: Big 3 Side Effects Questions in MAC & Bronchiectasis

@phayslip I was hit hard with the diagnosis and after every scan as far as emotional issues and worry. I decided not to add additional medication to treat that as I feel I already have so much in my system. Communicating with others here does help that.


@auntnanny I just spoke to the intake people at Mayo in Rochester to set up an appt also. I will try the Hilton Garden Inn for a room when I go. Can you tell us how they do their consult visits. Did you have to do any tests there? How long did you have to stay?

Wed, Jun 26 9:23am · Newly Diagnosed: Big 3 Side Effects Questions in MAC & Bronchiectasis

@phayslip I feel so badly you are going through this. I understand the emotional, mental aspect. I had a period of nausea that lasted for several months but generally have been OK.. I have tried several different Probiotics and eat Yogurt daily. I am having more urinary effects recently. Not sure if anyone else has had that on the Big 3. If the cough is improving, hopefully you can stay on the meds. Let us all continue to pray for research that is coming down the pipeline to get funding and approval

Tue, Jun 25 6:37pm · Medication change from clarithromycin to azithromaycin in MAC & Bronchiectasis

@brigby I was started with the Azithromycin. I think that will be better tolerated than Clarithromycin. I have been on for 18 months. I had a culture come back positive in April. Susceptibility testing shows it is still susceptible. I am going to try for another opinion at Mayo in Rochester. My weight goes up and down in a 5 pound range depending on how stressful things get and usually around times when I have MD appts, Are you on Rifampin. Do you take it with an empty stomach. Rifampin should be on empty stomach. I would certainly give the Azithromycin a try. I was told it takes a long time to get rid of it cuz it takes a long time to grow and you have to catch it in all different stages of growth.

Fri, Jun 21 9:00am · What now? What else can be done? in MAC & Bronchiectasis

I am still testing positive after 18 months on the Big Three. Still Susceptible to Azithromycin. I am contemplating Mayo or National Jewish. Mayo would be in Rochester MN. Has anyone been to Rochester and do you recommend asking for a certain MD or any other tips before or preparing to go. I feel a big disconnect with my current Pulmonologist and Infectious Disease MD. I am really also interested in joining a research study if anyone is getting any tips on those.