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What causes the bacteria to grow in some people and not other?
My mother was just diagnosed with MAC, having "the cough" for awhile now. After researching the internet all over the world on this bacteria culprit, I am trying to find out why the cilia in the lungs get damaged and allow this bacteria to invade. This bacteria is everywhere (water,soil) mostly. What has happened that people are getting this a lot NOW? Can anyone answer these three questions so that we may link WHY this bacteria may be getting stronger for some, please. There has been a 30% increase of the diagnosis of MAC in the last 20 years. It seems to be a large number of small, petite white woman, getting diagnosed between the ages of 61-17, in the little bit of studies that have done. I want to find the connection! I am also in the medical field, and don't want MAC when I get to 61 years old. (10 years)
Have you ever smoked? how long? when did you quit?
Have you ever been an RN, or worked in the medical field?
Have you ever had whooping cough?
What part of the country were you raised?
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@suzylulu, Hello Suzy. I atteneded a mac conference last spring in D.C. The leaders in this field seem to think that three days a week on these antibiotics is just as effective and lessons the exposure of these drugs to your other organs.
Thanks, Teri, for the information. Hopefully it does work without the terrible side effects.
@jonigc, Hi Joni. Yes, sometimes mac does go aeay on it's own. That is why my Mayo doctor doesn't automatically put patients on the Big 3 right away after diagnosis. He takes the wait and see approach.
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1 ReactionWhat doses are you taking?
I take Azithromycin 500mg Ethambutol 1200mg and Rifampin 600mg 3 times a week. I had to stop Rifabutin because of severe muscle and joint aches and that was changed to the Rifampin. I hit my 2 month mark on the 30th
I also work in the medical field. We are all struggling to get those answers and to try to encourage more research, better reporting and getting the word out there. It seems no one is pushing hard enough for progress. I did speak with a researcher in Texas and was told they were having trouble getting funding to proceed with more studies. Research includes Inhaled Nitric Oxide another compound that makes the MAI cell wall more vunerable to antibiotics etc but it takes money and time to get the studies running and through the FDA. We need a famous spokes person!!!
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1 ReactionI'm so glad u posted this info about the big 3....this is the first time I have heard this....sorry for butting in, but I follow your info....wonder how many other people didn't know this...just saying✌️
I really appreciated the post about reinvention. Thank you so much!
I retried the Toby in a new nebulizer and actually got to 15 treatment which was so much better than before( 4 treatments). But I had to stop as I had trouble breathing. Next they will try me on Amikacin. It takes about 2 weeks or so to order it. I read somewhere that one person could only tolerate it every other day.
Shari,
I saw my RA Doctor Friday he prescribed minocycline for me. He thought it was worth trying after I told him all I've read on this blog and your experience. I have to have lung scans every 6 months also have contact with the infectious decease doctor. Thanks so much for your input I'll keep you posted.
New to group....I have been diagnosed with mild bronchiectasis-also acid reflux....this has been ongoing for last 10 years. Gave up smoking 35 years ago. Worked in dental field, also in medical field. Had every childhood diseases known- born in England just after war...damp climate. Began with pancreatic issues five years ago and now after several tests I have been diagnosed with a mutant gene for Cystic Fibrosis. I don't have tCF just the gene.....perhaps this might explain some of my long term problems....always wondered why "mild" bronchiectasis caused such amounts of flem.