I am a long time viewer, but first time writer on this site. My daughter- age 12, who has CF, just cultured positive for M. Avium complex (MAC) NTM for the third time in 12 months. I was told by the doctor two months ago, that if she cultured positive again that we could have a discussion on a way forward. Until last year, her PFTs were above 100%. 6 months ago, they went down to 80% and last month they were 90% -- better, but not back at her baseline. She is an active girl - swims and plays tennis competitively year round and generally feels very good. She has only been hospitalized once for pseudomonas, also in the last year. After looking online, it looks like the jury is out on whether or not to pursue aggressive treatment. In the past, we have favored being aggressive with treatments, but long term IV antibiotics could significantly impact her day-to-day life -- she gets a lot of happiness being in these activities with her friends. Of course, her long term health is most important. Wondering if anyone else in similar situation, or any advice? Thank you!
Mac
- Thread starter mep65
- Start date
Hi Mep! I just wanted to firstly say WELCOME! 
I know it can be scary to come out of "lurkdom". I hung out there for a long too!
I don't know anything about MAC, sorry! I hope you will get some good responses. I do, however, understand your dilemma regarding quality of life vs. long-term IV treatment. My advice is wait and see what the docs say before you stew about it too much. I know, easier said than done right?! But, they may say something entirely different than what you are thinking they will. Or they may say she absolutely needs the long-term IVs, and then you won't have much of a decision to make.. I say that from experience too. So many times I have worked myself up, only to go to clinic and get a completely different outcome than I was expecting.
As far as the quality of life goes, she could still do most things with a PICC line, and maintain an active lifestyle. Probably even play tennis (I know people who have). However, swimming would obviously be a no-go. I swam pretty much daily in the summer as a kid/teen, so I fully understand it would be pretty devastating if she couldn't. But as you said, definitely have to go with what is best for her long term health. At her age, I would say it's important to try to get her PFT's back up as close to baseline as possible. If she does end up on long-term IVs, maybe try to find some kind of alternative for the swimming? Our town has a new indoor trampoline park that is pretty cool. Maybe roller skating? Just some crazy brainstorming in case it would help!
I'm sorry I don't know more about treatment options, like I said, hopefully other with experience will chime in. Hopefully I've helped at all!
Take Care and good luck!
Autumn 34 w/CF
I know it can be scary to come out of "lurkdom". I hung out there for a long too! I don't know anything about MAC, sorry! I hope you will get some good responses. I do, however, understand your dilemma regarding quality of life vs. long-term IV treatment. My advice is wait and see what the docs say before you stew about it too much. I know, easier said than done right?! But, they may say something entirely different than what you are thinking they will. Or they may say she absolutely needs the long-term IVs, and then you won't have much of a decision to make.. I say that from experience too. So many times I have worked myself up, only to go to clinic and get a completely different outcome than I was expecting.
As far as the quality of life goes, she could still do most things with a PICC line, and maintain an active lifestyle. Probably even play tennis (I know people who have). However, swimming would obviously be a no-go. I swam pretty much daily in the summer as a kid/teen, so I fully understand it would be pretty devastating if she couldn't.
But as you said, definitely have to go with what is best for her long term health. At her age, I would say it's important to try to get her PFT's back up as close to baseline as possible. If she does end up on long-term IVs, maybe try to find some kind of alternative for the swimming? Our town has a new indoor trampoline park that is pretty cool. Maybe roller skating? Just some crazy brainstorming in case it would help! I'm sorry I don't know more about treatment options, like I said, hopefully other with experience will chime in. Hopefully I've helped at all!
Take Care and good luck!
Autumn 34 w/CF
Hi Mep! I just wanted to firstly say WELCOME!
I don't know anything about MAC, sorry! I hope you will get some good responses. I do, however, understand your dilemma regarding quality of life vs. long-term IV treatment. My advice is wait and see what the docs say before you stew about it too much. I know, easier said than done right?! But, they may say something entirely different than what you are thinking they will. Or they may say she absolutely needs the long-term IVs, and then you won't have much of a decision to make.. I say that from experience too. So many times I have worked myself up, only to go to clinic and get a completely different outcome than I was expecting.
As far as the quality of life goes, she could still do most things with a PICC line, and maintain an active lifestyle. Probably even play tennis (I know people who have). However, swimming would obviously be a no-go. I swam pretty much daily in the summer as a kid/teen, so I fully understand it would be pretty devastating if she couldn't.
I'm sorry I don't know more about treatment options, like I said, hopefully other with experience will chime in. Hopefully I've helped at all!
Take Care and good luck!
Autumn 34 w/CF
Autumn,
Thanks so much for the response!! I am trying not to get too concerned, but do like to do my research prior to the doctor's visit --- but great point that the CF Team may have their own thoughts on the best way forward that I am not even thinking of. I also read that National Jewish Healthcare in Denver is a lead group for NTMs and it would be great to get their perspective as well. Its hard to think of an alternative to swimming - as she has been a competitive swimmer since she's been 8 and she's very proud of what she has accomplished so far. I think quitting would also be a morale hit as it means the disease is starting to impact her. But, she also is pretty pragmatic (for a 12 year old) and understands that her health needs to come first. But, definitely can look for some alternatives, especially activities where her friends are involved -- as in this age that seems to be a driving factor.
We are working on the PFTs... and its been so frustrating. We've tried several antibiotics and she had the one hospital stay with IVs and it only brought it up to 90% (before that she normally was around 110%). The CT Scan does show some damage to her lungs, so her doctors say her numbers are not inconsistent with those and other tests...but of course, we will keep working to get the #s back up!
Thanks again!
You are welcome! I definitely understand your concerns about the possible impact this could have on her moral. I also completely understand and agree with trying to have as much info possible prior to a doctor's visit. I've done the same thing many a time when faced with something new. But more recently I also try not to let my wheels spin too much, or I sometimes get way ahead of myself.
I've heard great things about National Jewish. I know they have an awesome CF program. I met with one of their research coordinators and Dr. Nick about 2 years ago when I went out there to be screened for a clinical trial. I really like them and got a good vibe from the whole experience. I think if you chose to seek a second opinion there you would be in good hands!
That's a bummer about the lung damage. I was hoping since she had a steep decline in a pretty short time period, it could be regained if the MAC was aggressively treated. I'm no doc (obviously), but I would guess with time it's still possible for her to regain at least a little more of what she lost.
It sounds like she is in very good hands with you. Keep up the good work mom!
Autumn
M
mommy w/ cf
Guest
Hi! So I actually am being treated for MAC currently. I am 23, married and a mom of a toddler.
MAC is an interesting bug(in the oh wow the doctors still are learning about it sort of interesting.) . There are a couple of schools of thought about it. Some docs say to wait to treat it until they can for sure tell that it is the MAC that is really causing the lung function drop( because in some cases MAC can just sit in your lungs for years and have no ill results for the individual), others are more pro-active about treatment. My doctors waited due to the fact that I had just relocated to WA from FL and they did not know my case very well. I would strongly NOT recommend waiting, as it has really caused a lot of problems for me in my case. (Basically being extremely sick for the past two years) My lung function is still ok, 82, but that is from being up around 98 or higher all the time (pre MAC). It was in the 70's before they decided to treat, but at least it has come back slowly! (Another reason I am for being proactive, staring to kill the bacteria before it causes permanent lung damage seems like a good idea to me ?)
here is a little of what I went through with the actual treatment and I hope it helps!
so the docs put me on a cocktail of three antibiotics (ethambutol, rifampin, and clarithromycin) that are pretty nasty, but fortunately they are all oral! No PICC line needed! (Which was such a huge relief for me, as I love swimming too! And actually used to teach it!) for your daughter's case they will want a sputum sample to test was the MAC is sensitive to, and they will go from there. I have not heard of only being treated with one antibiotic at a time with MAC, as the bacteria is so slow growing that they typically want to hit it with multiple different things. I do not think IVs are the way the doctors like to go either, because the treatment is so long. Which would be wonderful if this proved to be the case for your daughter as well!
now, the antibiotics are nasty. I don't want to sugar coat it, so that you have a good idea what to expect. They really make me nauseous, to the point that if I take them in the morning, I will indeed throw up. What I have found that works is eating a pretty hefty snack and then taking them right before I go to bed. This allows me to fall asleep before the nausea kicks in full force. Sometimes I am still a little nauseous in the morning, but it typically goes away within an hour or so. Since I have been taking the meds this way, I have not thrown them up and have been tolerating the MAC treatment well. (Not everyone is this fortunate, but I sure hope your daughter will be!) the doctors have told me that making sure the patient can tolerate the treatment is always a concern, because these antibiotics really are hard core. They will also want to do blood work ( a liver panel) very often because the meds are hard on the liver. I get blood work every three months when I see the specialist (in my case my cf doctors are working with an infectious disease doctor who is managing my MAC. I go to The university of Washington medical center in Seattle, so I do not know that all cf doctors have this resource, some cf docs deal with all of it. )
ok... Now here is where you will want to take a deep breath. The treatments for MAC are extremely long. My doctor right now is treating me until I have a negative sputum culture for MAC, and from that point they continue to treat for a whole year. He said that in most cases the treatment ranges from two to four years. I hope this is not too heavy for you! ? I take the MAC meds every Monday, Wednesday, and Friday and have been since October. Because I was responding really well, they thought I might only be on the meds for a year, but I cultured positive for MAC again, so now they are reavaluating how long they want me on this course. It looks like if I get a negative next time, I will be able to be done August of 2016. Fortunately, the length of the course will not have too much affect on your daughter's day to day life, once she gets used to what works for her body to tollerate the meds. For me everything is pretty normal in day to day life, and my lung function is slowly improving (with a super faithful treatment and exercise regime on top of the MAC meds)
if you have any questions or are wondering about my experiences in any way, please feel free to ask! I really hope this huge book is helpful, and I wish you and your daughter the best with whatever you decide in your situation! ?
MAC is an interesting bug(in the oh wow the doctors still are learning about it sort of interesting.) . There are a couple of schools of thought about it. Some docs say to wait to treat it until they can for sure tell that it is the MAC that is really causing the lung function drop( because in some cases MAC can just sit in your lungs for years and have no ill results for the individual), others are more pro-active about treatment. My doctors waited due to the fact that I had just relocated to WA from FL and they did not know my case very well. I would strongly NOT recommend waiting, as it has really caused a lot of problems for me in my case. (Basically being extremely sick for the past two years) My lung function is still ok, 82, but that is from being up around 98 or higher all the time (pre MAC). It was in the 70's before they decided to treat, but at least it has come back slowly! (Another reason I am for being proactive, staring to kill the bacteria before it causes permanent lung damage seems like a good idea to me ?)
here is a little of what I went through with the actual treatment and I hope it helps!
so the docs put me on a cocktail of three antibiotics (ethambutol, rifampin, and clarithromycin) that are pretty nasty, but fortunately they are all oral! No PICC line needed! (Which was such a huge relief for me, as I love swimming too! And actually used to teach it!) for your daughter's case they will want a sputum sample to test was the MAC is sensitive to, and they will go from there. I have not heard of only being treated with one antibiotic at a time with MAC, as the bacteria is so slow growing that they typically want to hit it with multiple different things. I do not think IVs are the way the doctors like to go either, because the treatment is so long. Which would be wonderful if this proved to be the case for your daughter as well!
now, the antibiotics are nasty. I don't want to sugar coat it, so that you have a good idea what to expect. They really make me nauseous, to the point that if I take them in the morning, I will indeed throw up. What I have found that works is eating a pretty hefty snack and then taking them right before I go to bed. This allows me to fall asleep before the nausea kicks in full force. Sometimes I am still a little nauseous in the morning, but it typically goes away within an hour or so. Since I have been taking the meds this way, I have not thrown them up and have been tolerating the MAC treatment well. (Not everyone is this fortunate, but I sure hope your daughter will be!) the doctors have told me that making sure the patient can tolerate the treatment is always a concern, because these antibiotics really are hard core. They will also want to do blood work ( a liver panel) very often because the meds are hard on the liver. I get blood work every three months when I see the specialist (in my case my cf doctors are working with an infectious disease doctor who is managing my MAC. I go to The university of Washington medical center in Seattle, so I do not know that all cf doctors have this resource, some cf docs deal with all of it. )
ok... Now here is where you will want to take a deep breath. The treatments for MAC are extremely long. My doctor right now is treating me until I have a negative sputum culture for MAC, and from that point they continue to treat for a whole year. He said that in most cases the treatment ranges from two to four years. I hope this is not too heavy for you! ? I take the MAC meds every Monday, Wednesday, and Friday and have been since October. Because I was responding really well, they thought I might only be on the meds for a year, but I cultured positive for MAC again, so now they are reavaluating how long they want me on this course. It looks like if I get a negative next time, I will be able to be done August of 2016. Fortunately, the length of the course will not have too much affect on your daughter's day to day life, once she gets used to what works for her body to tollerate the meds. For me everything is pretty normal in day to day life, and my lung function is slowly improving (with a super faithful treatment and exercise regime on top of the MAC meds)
if you have any questions or are wondering about my experiences in any way, please feel free to ask! I really hope this huge book is helpful, and I wish you and your daughter the best with whatever you decide in your situation! ?
Mep, I want to give you my experience with MAC. I am currently on my second round of MAC treatments. My first treatment of Rifampin, Ethambutol and Azithromycin lasted for 12 months. Prior to my first set of treatments I had recurring low-grade fevers, lethargy. I was wiped out. My pfts went down about 12 points. After I started my treatment I improved rather quickly. After 10 months on my treatment I cultured positive for MAC again. After two more months and negative cultures we stopped the treatment to see how my body would respond. I did ok for a number of months. About 6 months later I started culturing MAC again, on and off. We monitored my symptoms. I began again to have low-grade fevers, I was exhausted and had no energy to do anything. This past January I had a very bad week where I could not shake the fevers and I was in bed. I was then hospitalized for 5 days. I started the same MAC treatment again and I got IVs to go after my other bugs. So far so good. I have not cultured MAC since January and my energy is good and no fevers. Our goal is for another 6 months of treatment, assuming no positive cultures. My PFTs the second time around stayed about the same. MAC can either be nodular or cavitary. I have nodular MAC, which is not as severe. They can tell the type of MAC from X-Rays. There are a couple of strategies on treating MAC. Some get right on it. Others wait until they are symptomatic and then treat it. It looks like I will be on these treatments off and on. I have tolerated the treatments very well. No issues for me, though I know others may have a tough time tolerating it. I have to get my eyes examined every 4 months because of the possible effects of ethambutol on my vision. So far, so good. I get bloodwork done every month to check liver panel, etc....its important to keep the liver strong. I drink a ton of water and exercise quite a bit. I take milk thistle and dandelion root and they really keep my liver numbers good. I also have monthly visits to the cf clinic for PFTs, sputum, etc....Having MAC is work, but if it becomes a problem, please know there is a method to control it with oral antibiotics. I really hope your daughter gets better and gets the best care possible.
Mommy w/ cf. Thanks so much for your response and yes it is extremely helpful!! Its helpful to know there are other options besides IVs and what that treatment entails, and that you've had some success with it. Its also very helpful to hear that you recommend not waiting based on your experience. I will definitely take these views to the doctor when we meet. I also really appreciate letting us know the downsides and all the follow up requirements.... wow, it is a lot, but all so important! We are in the Washington DC area, and we don't have any experience yet with an infectious disease doctor. We realize its different for each person, but its so great to hear about it from a person who has gone through it, and that you are able to balance treatment/life as much as possible (with some trial). We just want to make as an informed decision as we can. So glad to hear that your lung function is improving...even if slowly. Thanks again!
). We just want to make as an informed decision as we can. So glad to hear that your lung function is improving...even if slowly. Thanks again!
M
mommy w/ cf
Guest
I'm so glad my experience came to some good, and is able to help you!
So, I realized that in my previous post I failed to mention what "sick" entailed that lead me and my doctors to a firm decision to treat my MAC. For about a year I was struggling with intense exhaustion and at first I thought it was just because I had a young baby at the time and reoccurring staff and puedonomus infections (which definitely contributed to it), but even as my son got older and my other infections cleared up (those had culminated in pneumonia and a week long hospital stay by the way), I still was very wiped out all the time and my lung function was lower than my baseline by a mile. Then fevers started, like 104 F fevers, which is what ultimately tipped the scales in favor of treating my MAC infections, but I was still on and off of bactrim for multiple months before the doctors determined MAC treatment the was indeed the right option. Because they didn't know my case all that well, they wanted to firmly know it was not something else causing the fevers. For me it meant from about febuary through October of constant fevers and sickness. The other bacteria were being actively treated, and still I was tired, feverish, slowly loosing weight and quickly losing lung function. When we started the treatments for MAC my fevers and exhaustion went away within days and my lung function started going back up. My weight leveled out as well. This experience for me is what makes me a fan of being proactive, as some of my sickness could have potentially been avoided had I been treated sooner.
i just thought that might help clear up some of the details of what my particular situation was that firmly detirmined that this was the right option for me, and I realized some of these details might be helpful. I hope your daughter's doctors are super understanding with explaining everything to you both when you see them next, but I sincerely hope some of my experience helps you rest easier at night until then, because we all know that sometimes just knowing what's up (even if it isn't the easiest thing to hear) makes a mommy sleep a little easier at night!? I sincerely will be praying for you guys, and hope everything works out for your little (or not so little anymore) girl!
So, I realized that in my previous post I failed to mention what "sick" entailed that lead me and my doctors to a firm decision to treat my MAC. For about a year I was struggling with intense exhaustion and at first I thought it was just because I had a young baby at the time and reoccurring staff and puedonomus infections (which definitely contributed to it), but even as my son got older and my other infections cleared up (those had culminated in pneumonia and a week long hospital stay by the way), I still was very wiped out all the time and my lung function was lower than my baseline by a mile. Then fevers started, like 104 F fevers, which is what ultimately tipped the scales in favor of treating my MAC infections, but I was still on and off of bactrim for multiple months before the doctors determined MAC treatment the was indeed the right option. Because they didn't know my case all that well, they wanted to firmly know it was not something else causing the fevers. For me it meant from about febuary through October of constant fevers and sickness. The other bacteria were being actively treated, and still I was tired, feverish, slowly loosing weight and quickly losing lung function. When we started the treatments for MAC my fevers and exhaustion went away within days and my lung function started going back up. My weight leveled out as well. This experience for me is what makes me a fan of being proactive, as some of my sickness could have potentially been avoided had I been treated sooner.
i just thought that might help clear up some of the details of what my particular situation was that firmly detirmined that this was the right option for me, and I realized some of these details might be helpful. I hope your daughter's doctors are super understanding with explaining everything to you both when you see them next, but I sincerely hope some of my experience helps you rest easier at night until then, because we all know that sometimes just knowing what's up (even if it isn't the easiest thing to hear) makes a mommy sleep a little easier at night!? I sincerely will be praying for you guys, and hope everything works out for your little (or not so little anymore) girl!
4hats.. thank you for sharing your experience -- it is so helpful to understanding about MAC and symptoms and treatments. My daughter doesn't have significant symptoms, yet. A little tired here and there, but not recurring fevers or lethargy like you mention. I will look out for those from now on. I usually am very sensitive to her coughing, but not so much about being tired. Sounds like the treatments improved those symptoms, which is great to hear. Also, sounds like a long and frustrating process to go on and off the medications and not really sure if MAC will truly ever be gone... but its helpful to keep our expectations realistic. I had not heard about nodular or cavitary -- I will look that up and add that to my questions for the CF Team!! Glad to read that you have tolerated the treatments, but also still taking proactive steps to get checked to make sure! It does sound like a lot of work -- but its aweome to hear that you are able to control it pretty well with oral antibiotics. THANKS AGAIN!!
My son, also 12, has Mac. Last May was his first time in the hospital also, at the time his lung function had just gotten too low & he hadn't been gaining weight so we decided it was time. He doesn't cough anything up so they did a bronchoscopy to find out what might be causing this. That's when we found out about the Mac. He went to a specialist in Tyler, TX (we live in Houston) that is known for treating Mac. He started meds for Mac in October. He takes azithromycin, ethambutol & rifampin in pill form 3 days a week. He also does inhaled amikacyn 3 days a week, this is the alternate to doing an IV. Both his CF Dr & the Mac specialist have said that he will have a bronch every 6 months to see if the Mac is still present, once it's no longer present then he will continue the meds for an additional 6 months to make sure it's gone.
He too has been fairly healthy and normal with his disease. We took time off sports last fall to focus on getting him better and getting used to the new routine. He has started sports back up this spring and will be in school sports in the fall. His lung function hasn't had the improvement we had hoped for, he's currently about 61% and a year ago he was at 51%. Prior to the Mac he was usually about 81%. He had a bronch about 3 weeks ago, his first one since going on the meds, and we are hoping to have some news soon about the culture. Monday he goes to the Mac specialist and we'll see what she has to say. I really haven't seen much of a change in him as far as the symptoms go. He hates doing the breathing treatments, but that's nothing new. And thankfully he's doing the inhaled Amikacyn so we haven't had to worry about a PICC line or IV. That really is the best way to go, the treatment only takes about 5 minutes so it's not a big strain on his regular routine. I'd be happy to be in contact with you directly about this since it sounds like our kids are about the same. And I'm sure my son would gladly contact your daughter if she needs anyone to help her understand what he's doing.
He too has been fairly healthy and normal with his disease. We took time off sports last fall to focus on getting him better and getting used to the new routine. He has started sports back up this spring and will be in school sports in the fall. His lung function hasn't had the improvement we had hoped for, he's currently about 61% and a year ago he was at 51%. Prior to the Mac he was usually about 81%. He had a bronch about 3 weeks ago, his first one since going on the meds, and we are hoping to have some news soon about the culture. Monday he goes to the Mac specialist and we'll see what she has to say. I really haven't seen much of a change in him as far as the symptoms go. He hates doing the breathing treatments, but that's nothing new. And thankfully he's doing the inhaled Amikacyn so we haven't had to worry about a PICC line or IV. That really is the best way to go, the treatment only takes about 5 minutes so it's not a big strain on his regular routine. I'd be happy to be in contact with you directly about this since it sounds like our kids are about the same. And I'm sure my son would gladly contact your daughter if she needs anyone to help her understand what he's doing.
Mom2Brett... thanks for writing! We were thinking too about asking the CF Team to do a bronch to make sure we know everything that is going on before we start any long term treatment. Its so helpful to know they are treating him, even though he hasn't had any major symptoms -- of course besides the 30% drop in FEV1, which is scary itself. Its sounds like its critical to get a MAC specialist. While our CF team is great, I think having someone that specializes in this will be reassuring. And, that is great to hear that its "just" oral meds... I know which is still a lot, but not as big of a lifestyle change. I would love to talk more and I am sure my daughter would love to talk with someone her age going through this, I will talk with her! Having someone who understands the situation (and someone outside the family
) may be good for her.Thanks everyone for your replies, unfortunately I found out today that although my daughter cultured Mac in the past, the past two times she has actually cultured mycobacterium abscessus, so they are going to treat that with two IV (amikacin and imipenem) and oral azithromycin at least 3 weeks but likely longer until she is clear. (Then change to Orals) So I am starting my research on this bug.