What causes the bacteria to grow in some people and not other?

Posted by 1478 @1478, Jan 11, 2018

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?

@carla1196

Hi everyone. I also have been told I have pulmanary MAC . I found out back in March of 2017 that I have this. I had been in the hospital 2 time with pneumonia both times with in a year of each other. When I was told about MAC I was also told for mor information, to read up on Lady Windermier as well.
I smoked for over 25 years but quit 2 years ago. I have been on the 3 medications for 8 months now with lots of side effects. I was just taken off the ethembuthol last month due to serious breathing problems. I do not have acid reflux and never have. I was raised in Cincinnati, Ohio. I am of very small frame weighing only 97lbs now. I use to weigh about 115 before I caught the 1st bout of pneumoniaa couple of years ago. I was 54 when I found out I had this and I never worked in the medical field.
I hope also you can find a connection. Best of luck to everyone who is fighting this terriable thing. HUGS

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@carla1196 Congrats on quitting Carla! Ever have cravings? Have you seen any improvements since you quit?

@ginak That’s an impressive quit as well!

Mark
Community Manager
https://excommunity.becomeanex.org

@carla1196

Hi everyone. I also have been told I have pulmanary MAC . I found out back in March of 2017 that I have this. I had been in the hospital 2 time with pneumonia both times with in a year of each other. When I was told about MAC I was also told for mor information, to read up on Lady Windermier as well.
I smoked for over 25 years but quit 2 years ago. I have been on the 3 medications for 8 months now with lots of side effects. I was just taken off the ethembuthol last month due to serious breathing problems. I do not have acid reflux and never have. I was raised in Cincinnati, Ohio. I am of very small frame weighing only 97lbs now. I use to weigh about 115 before I caught the 1st bout of pneumoniaa couple of years ago. I was 54 when I found out I had this and I never worked in the medical field.
I hope also you can find a connection. Best of luck to everyone who is fighting this terriable thing. HUGS

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I was not hard for me to quit once the Dr said if you do not quit smoking I guarantee you will end up with lung cancer due to the MAC infection. I quit that day and never looked back! Guess to hear the words you are going to get cancer for sure if you don’t quit was what I need to hear. I wish it could be that easy for everyone to quit.

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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I am 61 year old female like you I have a autoimmune decease, I’ve had RA for 5 years. I was recently diagnosed with MCA/MAI with little or no symptoms. I was tested after a couple bouts with pneumonia that raised suspicion. My RA Doctor has taken me off my medications due to them causing some skin cancer which is a side effect. My RA Doctor won’t put me on any other RA drugs until the MAC has been treated because my low immune system which could make the MAC worse. This is a problem because the last couple months I’ve had some pretty intense RA flair ups. I’ve seen an infectious disease Dr. who told me if I don’t have any systems & feel ok to wait and see since the MAC treatment brings a person to near death.I’m afraid to start the treatment for MAC with good reason by the sound of these posts. Another worry is how will my RA be managed? Should I be retested to be sure I have MAC? I’m worried sick! Any comments would be appreciated.

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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I also want to add a suspicion I have, two years ago my family rented an VRBO in northern for a month. It was the rainiest spring CA had seen for years. I noticed the house we stayed had a slight mold or mildew smell. Could that have caused my MAC? I did have a cough for a couple months after returning from that trip.

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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Hi @jonigc, welcome to the group. I’m tagging @boomerexpert who has RA and MAC. I’m hoping she has some insights for you.

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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@gonigc
Hello I also have RA and was diagnosed with Mac for a year but now am stable and not showing Mac without any antibiotic treatment.
For the my Ra I’m on minocycline 100 mg two times a day three times a week Monday Wednesday and Friday.
Im also on plaquinil also called hydroxcychloquine dosage 300 mg a day.
I have checked with four different Dr’s and they all agreed that the plaquinil doesn’t lower your immune system…just have to have a eye exam once a year.
I was taken off humira 7 years ago when I got pseudomonas in the lungs and almost didn’t survive until they finally figured out it was because of the humira.
My Ra was quite severe but since the minocycline and plaquinil in doing fine.
Ask your doctor about these maybe you could take one or the other or both depending on how severe your Ra is.
Listen to the dr don’t use the immune lower drugs it’s a catch 22 your Ra will be better but serious infections and cancer happen with them.
How this helps hang in there!
Shari

@1478

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

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I have been on the big 3. They made me deathly ill. I was off them for 9 months and restarting them now but only 3 days a week. I just started Tuesday so don’t know what the side effects on 3 days versus 7 days will be.

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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@jonigc Terri aka BoomerExpert here… I too had to d/c biologics since their main mechanism is immune system suppression (seems rather lame to me, but it’s all medicine can come up with for now…). I get a Kenolog injection (steroid) every quarter (minimal immune suppression), take Naproxym 500 mgs every other day (would do more but can’t as it upsets the ol’ stomach), use Charlotte’s Web CBD oil (1/4 dropper twice a day), get an accupuncture treatment once a week, and now taking Enzyme Defense Pro (for RA) and Himalaya Ashwagandha (for fatigue). This combo seems to be helping pretty well…and once the enzymes kick in fully (takes time) expect to do even better. As you can see, many of these are natural (alternative) treatments that work without the toxic side-effects of standard drugs, to augment the lowest dose of drugs I can handle. I’ve also gotten a .2micron whole-house water filter to eliminate the mycobacteria from my home’s water system. @gonigc mentioned some other options that work without suppressing the immune system. We have lots of options that don’t entail biologics (with their nasty side-effects). You now have lots to try to manage your RA as you accommodate your MAC! Oh, and I’m not as yet on antibiotics as I’m still asymptomatic like you. Hope that will continue for many years!

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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Shari, So you’re saying your MAC went away on its own? I’m on plaquinil now and will ask about your other med. Thank you for the feedback…I’ll keep you posted.Joni

@pinktower

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.

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@jonigc
Joni I tested positive for a year and the Dr’s and myself wanted to take a wait and see attitude. Mine was mycobacterium abcessus also which is the one that’s more resistant to treatment, it would take longer and they would of had me on iv’s that i would give myself for 6 weeks. Well anyway it had been testing negative since last spring. The last test was a brochialscope last fall which should be accurate and that was negative also.
My Dr also said he would do several brochialscopes a year if needed to keep things washed out. Also I was prescribed a vest airway clearance therapy twice a day for a half hour. It shakes the phlehm loose so I can cough it out. I’m taking some herbs I learned about from the book Herbal Antibiotics. I started all these things at the time I started testing negative.
Hope this helps!
You can read about minocycline therapy for RA on “The Road Back Forum.”
Shari

@1478

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

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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.

@1478

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

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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.

Liked by oremuslepidus

@1478

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

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What doses are you taking?

@1478

Good morning Pink Tower. Thank you for this good information. My name is Cheryl, and I was wondering how old were you when you were diagnosed with Crohn’s? What was the time difference between the Crohn’s diagnosis and the MAI diagnosis? I believe there is a connection too.

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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

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