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Possible causes of MAC/MAI Re-Infections
Possible Causes of MAC/NTM re-Infection
One cause is that we do not fully get ‘cured’ of these infections; but rather they get beat down to a manageable level by antibiotics. When we get run down or sick, that gives it the opportunity to rear it’s ugly head again and grow colonies that make us very sick.
The second known cause is that we most likely caught this somewhere in our daily routine, whether it be in the home, job, outdoors, or at the gym. Most likely, we caught this in our own homes.
Most of the mycobacteriums that typically infect those with bronchiecstasis and cystic fibrosis form a bio-film. Bio-film is the sticky stuff the bacteria surrounds itself with to shield it from our immune system, antibiotics, and other mycobacteriums. It also uses it to attach itself to plumbing pipes and tubes, sides of swimming pools and hot tubs, inside of water filters, inside of water tanks of your refrigerator (ice-maker & water in the door), tanks inside medical equipment for surgeries, and dental rinsing tools.
Some people get re-infected by environmental means as well. For example a person who works in a nursery/garden center may catch it from the potting soils and misting water. Because they work around that day after day; they build up a bacterial load where the body can no longer defend against it. This is only one example of many on how it can be contracted again from outside sources.
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Taking probiotics has helped my stomach while on the Big 3. I had some loose stool and blood and eyes checked regularly and no problems - no hearing problems either.
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2 ReactionsKay strand...thrilled for you!!! Keep us posted...tdrell
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2 Reactions@mariposa Sport! Ba ha ha!
@tdrell Yes, Terri. the fall came after the moving. No good deed goes unpunished.
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1 Reaction@cld120 Carolyn, I honestly don't know what to think about the Big 3. My Mayo doc says he is against them unless a person is severely infected. Those drugs scare me. I think it may be a good idea for younger people to take them because they have stronger bodies to tolerate them. I opted to not take them back in 2005 because my body is so fragile and always has been. There is a lot documented out there for folks to do their due diligence on whether they think it is worth it. The future trend when the new drugs come out in the next 18 months is mainly using inhaleables. That way, the meds go directly into the lungs and spare going through your entire body. Cure rates are very low. The only institution claiming to be able to 'convert' someone is National Jewish Health. And even at that; the circumstances have to be just right.
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2 Reactions@jenblalock Jen, I am not sure about 'toby' being like Amikacin. All I know about tobramycin is that it kills pseudomonas infections and this med is typically used for Cystic Fibrosis patients. I asked my Mayo doc if it also kills mac, he said no. I said to him that it was ironic then, because the toby stopped all of my coughing. I had been coughing every day from sun up to sun down for the past 10 years! Explain that! Did I have pseudomonas infection all of that time? Mind you, my past drs never gave me a sputem test, so we will never know.....
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1 Reaction@barbie46 Wow, then you have gone a long stint without MAC infection, that's great! And it is encouraging! See this @jenblalock and @cld120? There is hope that this mess clears up. My lung function is at 40% too. Are you having issues with being short of breath? I am lately. I do not know if it is due to this current infection or just me going downhill. I have noticed that I have gotten worse. I haven't been to the gym in two weeks, mainly because of a recent fall. I swear, going to the gym was keeping me going.
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1 Reaction@megan123 Wine, yes, I can see how such fancies could arise. Thanks for the giggle!
@kaystrand That is wonderful Kay. It would be great if those who got better would come back to the forum from time to time and cheer those on that are going through the treatment of the BIG 3; to tell them what IS possible.
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2 Reactions@cld120 Carolyn, here is the list again of how often to keep up with various tests while on the BIG 3. Take care of those eyes! From the File Cabinet:
TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY
OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY
TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH
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