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@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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Replies to "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..."

I found this Forum when I became ill this year with a lung infection. I had been diagnosed with MAC in 2001 and was treated with the Big 3. I was susceptible because of radiation for Stage 4 Breast Cancer in 1988 (which I have survived).
Now I have a daily low grade temp and all the symptoms of a Big MAC infection. My doctor has been reluctant to treat me again with the Big 3 because I am now 89 yrs old and the side effects would probably kill me.
I was first diagnosed with bronchiectasis and then COPD. But the lengthy lab tests showed that I do indeed have MAC plus M. lentiflavin, which is new. Consultation with an Infectious Diseases doctor has resulted in a decision to treat me with Cipro to try to eliminate the pesky symptoms and give me a better quality of life.
windwalker writes that using the Big 3 is less common, which is worth looking into.
I have appreciated the comments in this Forum, which encouraged me. As patients, we need to keep asking questions and looking for answers. I live near Palo Alto, CA, and my doctors are at Kaiser Santa Clara. robynmar

Hi Robyn! Thank you for sharing your story with the forum. As you have stated that your age being a factor, I would imagine that they would want to have you on cipro on a regular basis as a maintenance therapy. I agree, the BIG THREE might just prove to be too much at age 89. Does anybody else have some input for Robyn?

I was put on cipro for pseudomonas bacteria ----- does it work on MAC too????

Jan, I assume it does because I was put on that (Cipro) and Doxycycline to treat my MAC in 2013. I took each one for 10 days on alternating months for three years. I am an unusual case, so they did not want to treat me with the BIG THREE.

Hi Jan. That would be a good question for your doctor, because per my previous reply; I cannot be certain that I wasn't put on the Cipro to protect me from pseudomonas. I would be interested to know what you find out. - Terri M.

Thank you ---- and has that program worked and kept you from becoming ill with MAC????

So far, yes. I contracted my MAC when I lived in Az. We had a hot tub and a swamp cooler for years. Both are known for harboring Mycobacteriums, especially MAC. I have since moved to S.C. Different water, no hot tub, I do not go into swimming pools, I live near the ocean and the sandy soil tends to drain off rainwater quickly. There is less dank dampness to harbor organisms. (just my opinion) I was, however, diagnosed with pseudomonas last spring after having been on the cipro and doxycycline for three years. Am now being treated for the pseudomonas with Tobramycin and cipro. I do do these on alternating months. You cannot judge what I take to be suitable for you, because we are all different. For some of us; the bugs we have may be resistant to certain antibiotics. My lung function is so low that I am on the brink of needing a lung transplant. That is why I was not put on the BIG THREE antibiotics. My doctors feel that I do not have time on my side for a long duration of treatment.

My point (I got off track) is that many re-infections happen because we are re-catching the MAC from the same source. Biggest culprit tends to be our very own hot water tanks and shower heads. It is recommended that we turn up the hot water tank to 130 degrees to kill the MAC inside our homes. I moved away from Az where my original source was. Am hoping my new local will prove safer. Terri M.

Thank you so much for posting this, Terri! I am sending a copy to my kids as well as turning up the temperature on my water heater! It is entirely possible that I was reinfected by the 50 year old water system in my home (although we have replaced the water heater)! My doctor also talked about the bacteria that live inside the pipes in our homes. I see research online about this regarding hospitals, but not about residences. My husband worked for the local water district and never heard about the MAC bacteria, only giardia and the more common bacteria. Robynmar

@robynmar, I think the reason that your husband has not heard about MAC is that, although MAC is ubiquitous (both in water and in soil), they are harmless to most people who come across them. They only cause problems to those whose lungs and/or immune systems are compromised.

@ling123 & @robynmar: Sorry to keep repeating this, but MAC is very underreported so many people most likely have it that are not being counted, thus the conservative estimate that infections are growing by 8% a year (that's a lot), and it is no longer infecting just those with compromised immune systems...people with normal systems are getting it now. The reason folks don't know about MAC is that there's no reporting requirements for it like other infectious diseases (like it's cousin TB), interestingly because it's not transmitted person to person, yet that it's transmitted through the water we all use, and the soil we all trod doesn't seem to be considered as dangerous (go figure...). That's why its incumbent upon all of us to educate (all, including doctors who know little about it) and advocate (for visibility and research)!