I am almost 11 months into my MAC treatment. All was going well. No MAC cultures for the entire time until yesterday. I was told that it grew again! Very, very disappointing. Next month I am meeting with my infectious disease doctor to discuss next steps. I am currently taking rifampin, ethambutol, and azithromycin to treat the MAC. I would like to hear from those that had MAC grow back after it was suppressed for a long period of time. Did it grow back while u were taking your meds? If so, did you change course in your treatment at all or did you just extend your current treatment? Did MAC start to become resistant? Any insight and experiences would be appreciated. Thanks.
MAC is back!
- Thread starter 4hats
- Start date
I have mycobacterium abscessus -- not exactly the same as MAC, but they're related NTMs. I'm sorry you are dealing with MAC -- these infections are very hard to treat and can be discouraging to live with.
They generally test for NTMs in two ways: an AFB smear and a culture. I've been told that since I have CF, I will never be culture negative. In other words, it will always be present in my lungs. The goal for my treatment focusses on getting the AFB smear to negative.
I have been undergoing aggressive treatment for over three years. Although I have gotten to periods of negative smears, they usually only last three or four months and then I have another positive smear. Last August (almost two and a half years of treatment) I had a horrible flare up and got very sick. They switched me from inhaled Amikacin to IV form and left my other meds the same. I have gotten back to where I was before the flare up, but I have not had a negative smear since then.
When I had one of my first positive smears after a run of negatives, my NTM specialist said that people will go along with negative smears for a while and then have a single positive result. If your next result is negative, you may not need to worry too much about this single data point.
In terms of medications, have they done sensitivity analysis on your MAC? This helps suggest drugs that would be most effective for treating your infection. My sensitivities show my infection to be resistant to most medications. That said, I had sensitivities done a few years apart and they didn't change -- the infection had not grown resistant to particular drugs.
One last comment -- I'm not familiar with most of the meds you're on. Are you taking any IV meds or are they all oral? If you're not on IVs, you may have to go on them at some point to treat this infection.
I hope your visit with the infectious disease doctor goes well. She/he may have some ideas of things to try. Good luck!
They generally test for NTMs in two ways: an AFB smear and a culture. I've been told that since I have CF, I will never be culture negative. In other words, it will always be present in my lungs. The goal for my treatment focusses on getting the AFB smear to negative.
I have been undergoing aggressive treatment for over three years. Although I have gotten to periods of negative smears, they usually only last three or four months and then I have another positive smear. Last August (almost two and a half years of treatment) I had a horrible flare up and got very sick. They switched me from inhaled Amikacin to IV form and left my other meds the same. I have gotten back to where I was before the flare up, but I have not had a negative smear since then.
When I had one of my first positive smears after a run of negatives, my NTM specialist said that people will go along with negative smears for a while and then have a single positive result. If your next result is negative, you may not need to worry too much about this single data point.
In terms of medications, have they done sensitivity analysis on your MAC? This helps suggest drugs that would be most effective for treating your infection. My sensitivities show my infection to be resistant to most medications. That said, I had sensitivities done a few years apart and they didn't change -- the infection had not grown resistant to particular drugs.
One last comment -- I'm not familiar with most of the meds you're on. Are you taking any IV meds or are they all oral? If you're not on IVs, you may have to go on them at some point to treat this infection.
I hope your visit with the infectious disease doctor goes well. She/he may have some ideas of things to try. Good luck!
I cultured with MAC many years ago but when my lung function started to decline my CF doctor sent me to a ID doctor who put me on the same mix that you are on She did not treat me before as I was doing well and lung function was stable and she felt it was just colonized and not diong damage. But after two years of treatment they wanted me to go off since I never cultured negative. I was in the middle of packing for a big move and pleaded to stay on the meds for another few months so I could get packed to move. So I did ad stopped treatment as asked and moved. Well, a few months after the movie I became the sickest and had a bronch and it cultured MAC, MRSA, Klebessa, acindeobacter (I know speling is wrong but you know what i mean plus a mold that is yet to be identified. I was on multiple IV's and treathemts during the five day stay and sent home with home IV's for two weeks. In the meantime the MAC culture did come back positive but still I was still sick they have started me on a similar treatment plan with similar meds, not the same, on M-W-F/ Still waiting for the final sensitives for determine final treatment plan. Moving in the mist of this was the pits. My former center was so great. New center is not as great. Hopstial was top rate though. Hard to transition to a doctor who does not repond to calls nor messges. They were in transition and have a new RN now. She at least is helpful and caring. So the story is that I will probably be on this for life. But don't become discouraged. I am 69. Hope you do well. I probably had this for many years and only tested in about 2004 when referred by my proir caring CF doctor. Have your lungs been damaged with nodules and bronchiectasis?
Good luck and prayers.
Good luck and prayers.
Thanks for the response and well wishes njlins. I hope you are able to get all those bugs treated and get them under control. I do have bronchiectasis in 3 of the 5 lobes and also in the lingula (branch connecting left lobes). My last CT scan a year ago+ did show some nodules. Thanks again for sharing your experience
M
m.coteklein
Guest
Hey 4Hats!
So the Avium complex is an "acid-fast" organism, which actually means it's growth is slow as Mosses-it takes months to grow-which is good! This means it's really hard for it to mutate! Now, MAC is literally everywhere, so if you were to open up anybody's lung, you could probably find trace amounts there (even those without CF!). The key is whether or not someone starts to become symptomatic for a MAC infection. Usually CF doctors will treat it right of the bat because symptoms take awhile to express themselves and because treatment is so long (because it's acid fast). I, like MichaelL, have M. Abscessus and I have yet to culture negative for it (treated for 16 months). One of my CF doctors told me he's got a patient that's been culturing for M.Abscessus for years but has been doing great clinically without treatment. So, keep in mind just because it's there, doesn't mean it's causing any problems (still good, and smart to get rid off though before it starts to become a problem (if it does become one)). Eitherway, It's good that you got a negative culture at one point! Means the med combo you were on worked! I know it's disheartening
because they are such tedious things to deal with! But it sounds like you respond to treatment well and that you feel pretty good! So, keep up the good work You'll get through this!
So the Avium complex is an "acid-fast" organism, which actually means it's growth is slow as Mosses-it takes months to grow-which is good! This means it's really hard for it to mutate! Now, MAC is literally everywhere, so if you were to open up anybody's lung, you could probably find trace amounts there (even those without CF!). The key is whether or not someone starts to become symptomatic for a MAC infection. Usually CF doctors will treat it right of the bat because symptoms take awhile to express themselves and because treatment is so long (because it's acid fast). I, like MichaelL, have M. Abscessus and I have yet to culture negative for it (treated for 16 months). One of my CF doctors told me he's got a patient that's been culturing for M.Abscessus for years but has been doing great clinically without treatment. So, keep in mind just because it's there, doesn't mean it's causing any problems (still good, and smart to get rid off though before it starts to become a problem (if it does become one)). Eitherway, It's good that you got a negative culture at one point! Means the med combo you were on worked! I know it's disheartening
because they are such tedious things to deal with! But it sounds like you respond to treatment well and that you feel pretty good! So, keep up the good work You'll get through this!I cultured Mac about 2 years ago. My CF doctor told me that they do not have evidence to prove weather it is more beneficial to treat or not treat. He said things are pointing towards treating but still not fully sure. For not I have chosen, not to treat. My lung function has still been steady but a little decline. I have had coughing up blood more often which is horrible. For me, the thought of treating is more scary then not treating but that is just my opinion. That might change someday as things get worse.
W
windex125
Guest
I have had MAC show up now for abt 9 or more years we treated it only once many years ago with the same cocktail Michael is taking and then I turned a nice color or orange remember those old coopertone ads to have that fake tan. So we stopped, and have not treated it since though I've had many infections since I have a port and do IV meds at home for the most part. I do think think MAC never leaves it nests really nice in warm spots and grows slow and once you have it you always will my opinion anyway. I also sleep with o2 at night 3 liters as this right lung is collapsed and the o2 at night helps for the next day. I try to do walking as much as I can. Also have severe bronchiectasis and last just went from being PS all of my 59 yrs to a full attack of acute Panncreatitis 10 days in hops. now on creon for first time ever. I am very depressed about this new addition esp. the changing of the diet. CF the disease that keeps on giving. Pat-59
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windex125
Guest
correction same meds as 4hats.....