Non Tuberculosis mycobacteria
- Thread starter semnle34
- Start date
My son, 11 years old with CF, was diagnosed with m.abscessus over the summer. He goes to the specialist in Tyler!! We live in Houston but actually moved away from Tyler about 2 1/2 years ago, we were stunned when his specialist in Houston told us the top Dr is in Tyler. We were told that Dr. Wallace does not see patients anymore but are working with one of his staff. The staff in Tyler has my son on inhaled Amikacyn and oral Azithromycin, Ethambutol and Rifampin. They have him doing the extra breathing treatment just 3 times a week and the oral meds also just 3 times a week. So far we haven't had any problems with anything, he goes back to Tyler in November for his first checkup. They told us that he would be on this treatment until the mycobacterium is gone but that they would continue it for another 6-12 months after to make sure it's gone. Never have they said anything about it possibly returning or never truly going away, so the posts on here have really surprised me. But I am (unfortunately) happy to see that my son is not a rare case like his specialist here in Houston made it sound.
I wouldn't call it rare, but it's not common either. The adult CF clinic I go to has about 450 patients. I'm one of about five with abscessus. My doctor said the UK CF clinics (it may have been one specific clinic) seem to have more abscessus cases, although I'm not sure why.
There are are two tests they perform related to abscessus -- an AFB smear and a culture. I've been told that I will never be culture negative. I think it's possible to become culture negative, but unlikely for those with CF.
The goal for my treatment was to get to smear negative and then continue treatment for another 12 months. I've been doing aggressive treatment for 3 1/2 years. In the last twelve months, I've had one negative smear.
I've been told my case has been much more difficult than average, so hopefully others here will have better results. When I started treatment, I was told about another patient in my clinic who got to negative smears and didn't have any absscessus problems for ten years.
I don't mean mean to scare people, but this is what I've heard since I've been undergoing treatments.
There are are two tests they perform related to abscessus -- an AFB smear and a culture. I've been told that I will never be culture negative. I think it's possible to become culture negative, but unlikely for those with CF.
The goal for my treatment was to get to smear negative and then continue treatment for another 12 months. I've been doing aggressive treatment for 3 1/2 years. In the last twelve months, I've had one negative smear.
I've been told my case has been much more difficult than average, so hopefully others here will have better results. When I started treatment, I was told about another patient in my clinic who got to negative smears and didn't have any absscessus problems for ten years.
I don't mean mean to scare people, but this is what I've heard since I've been undergoing treatments.
Michael Klein
New member
M.abscessus is just weird - and that makes the definition of treatment success a little odd. I do believe that most actually do clear the infection as compared to ones that don't, but it's the percent of relapse of patients (i.e. those that are culture free for a year, but contract again later) that skews the result of "treatment success". Of course relapse is so common because m.abscessus is found just about anywhere at anytime in anyplace. There's three main subgroups of m.abcessus (and even more small genetic variations in each subgroup) each of which responds slightly different to each treatment; distinguishing between these subgroups isn't very practical and usually isn't done because in theory, a doctor will be able to know which one is present due to treatment response. So, if and when relapse occurs, it might not be the same subgroup of m.abscessus which might or might not respond to the same drug treatment. Really, it all depends on what m.abscessus does while it's in the patient (i.e mutate, extra thick cell wall formation, etc) and what subgroup(s) is/are contracted. This is what contributes to the wide variety of clinical outcomes as well as the disproportionately large number of patients that never culture negative once m.abscessus is contracted and those patients that cleared m.abcessus with treatment for a year or so but experienced relapse later.
H
Hail2Pitt
Guest
Thank you all for contributing to this thread - it’s an interesting one! A few additional thoughts/questions…
1. Are some folks being treated for Abscessus with the “Big 3” (Ethambutol, Rifampin, and Clarithroymcin)? I know Clarithromycin (or Azithromycin) is usually used, but I thought the other two were specific to MAC treatment. Am I wrong?
2. The protocol used in the UK is interesting. It’s more aggressive than anything I’ve ever been through, and I’m going to ask my doctors about it, as I want to be as aggressive as possible. When you say 80% success rate, what exactly does that mean? Is that statistic on the site somewhere so I can point my doctors to it? Also, it seems this protocol does not take into account the results of sensitivity testing, and instead treats all Abscessus the same. Is that the case? Just curious, as that seems to be a slightly different philosophy than I’m used to hearing.
3. Do any of your doctors ever talk to you about exercise? For me, it’s been a game-changer. My doctors have been pretty surprised at how well I’ve done despite the fact that my Abscessus is so resistant and I’ve remained smear positive for much of the past 7+ years, and I attribute much of this to exercise. For example, last summer I was still smear positive, but I talked my doctors into giving me a short drug holiday (I stayed on Azithromycin and inhaled Amikacin as maintenance). They thought I'd just make it a couple of weeks before needing IVs again, but I made it 14 months. When I can't exercise for some reason, it only takes a couple of days for me to see my symptoms change (more congestion, more fatigue, etc.). But, as long as I’m doing cardio 4+ times a week, my symptoms are manageable and I’m able to live a pretty full life. I think exercise is a really important piece that seems to get kind of ignored.
1. Are some folks being treated for Abscessus with the “Big 3” (Ethambutol, Rifampin, and Clarithroymcin)? I know Clarithromycin (or Azithromycin) is usually used, but I thought the other two were specific to MAC treatment. Am I wrong?
2. The protocol used in the UK is interesting. It’s more aggressive than anything I’ve ever been through, and I’m going to ask my doctors about it, as I want to be as aggressive as possible. When you say 80% success rate, what exactly does that mean? Is that statistic on the site somewhere so I can point my doctors to it? Also, it seems this protocol does not take into account the results of sensitivity testing, and instead treats all Abscessus the same. Is that the case? Just curious, as that seems to be a slightly different philosophy than I’m used to hearing.
3. Do any of your doctors ever talk to you about exercise? For me, it’s been a game-changer. My doctors have been pretty surprised at how well I’ve done despite the fact that my Abscessus is so resistant and I’ve remained smear positive for much of the past 7+ years, and I attribute much of this to exercise. For example, last summer I was still smear positive, but I talked my doctors into giving me a short drug holiday (I stayed on Azithromycin and inhaled Amikacin as maintenance). They thought I'd just make it a couple of weeks before needing IVs again, but I made it 14 months. When I can't exercise for some reason, it only takes a couple of days for me to see my symptoms change (more congestion, more fatigue, etc.). But, as long as I’m doing cardio 4+ times a week, my symptoms are manageable and I’m able to live a pretty full life. I think exercise is a really important piece that seems to get kind of ignored.
I agree this has been a good discussion. I'm glad to hear from others on this topic.
On question #1, I have never used Ethambutol, Rifampicin or Clarithromycin. My sensitivity analysis was tested for Clarithromycin, but not the other two. I have been taking Azithromycin since I first started abscessus treatment in 2008.
On question #3, my doctors definitely encourage me to exercise and say that it helps with lung function. I've been going about five times a week recently. I don't think I exercise as strenuously as you do, but I suspect your lung function is higher than mine. My lung function has been down for the last couple of months and unfortunately the exercise hasn't brought it back up.
I know I already said this above, but I just want to warn everyone about Tygacil. It gave me severe pancreatitis, which is apparently a common side effect for people with CF. It took over two months for me to be in horrible pain, so a shorter dosage may be fine. It looks like the UK therapy that Rachie posted suggests a two-week course, so much shorter than the two months I was on it. Just watch out for stomach pain centred around the bottom of your rib cage and talk with your doctor if it happens.
On question #1, I have never used Ethambutol, Rifampicin or Clarithromycin. My sensitivity analysis was tested for Clarithromycin, but not the other two. I have been taking Azithromycin since I first started abscessus treatment in 2008.
On question #3, my doctors definitely encourage me to exercise and say that it helps with lung function. I've been going about five times a week recently. I don't think I exercise as strenuously as you do, but I suspect your lung function is higher than mine. My lung function has been down for the last couple of months and unfortunately the exercise hasn't brought it back up.
I know I already said this above, but I just want to warn everyone about Tygacil. It gave me severe pancreatitis, which is apparently a common side effect for people with CF. It took over two months for me to be in horrible pain, so a shorter dosage may be fine. It looks like the UK therapy that Rachie posted suggests a two-week course, so much shorter than the two months I was on it. Just watch out for stomach pain centred around the bottom of your rib cage and talk with your doctor if it happens.
W
windex125
Guest
I seem to ck this thread on a reg basis as mentioned I hv it as well and upon reading back today Michael Klein that was a very informative post. Did you research all of that on yr own just curious? As mentioned I as well did the cocktail more than 10 yrs ago but only saw a specialist when we did the cocktail. I wonder if I cld of saved that right lung had I been more aggressive on treatment? I realize it's too late to think about that now, but I am so impressed with all you younger folks who are being very smart, active and knowledgeable in yr treatments. I think a lot of my survival to date have been some denial, positive attitude, some exercise, dedication to my treatments, I walk abt 2 miles a day, not much but it works for me. I find you all amazing at times,it's what keeps me reading. I wish you all the best. I must say this site has helped me on a reg. basis esp. after my first attack this year with my pancreases I came home from the hosp. after 2 weeks and immediately read up on what everyone was dealing with this issue. So I thank you all, were so informed isn't that a great thing. Wish you all the best always. Pat/59
Its so good to hear from others, sadly I think we will hear from more and more as they get better at finding this bug, as it loves to hide down there. So I finished my 2 week IV course (Tygecycline, Meropenum and Amikacin plus oral Clarithromycin). Tygecycline is tough but The Brompton in London have been very lucky to get a special license to use the chemo antisickness drug Aprepitant (Emend) as they feel it is so important to tolerate for the full course, I did not experience any nausea thanks to this which they combined with Ondansetron and Domeperidone.
So now I'm home and slowly getting used to the orals these are Clarithromycin, Minocyclin and Moxifloxacin plus nebulised Amikacin for 18 mths.
Michael re sensitivity testing the way they explained it to me is the bug can often respond differently in the lung when bombarded with several antibiotics, so they can never quite tell how resistant it really is. M.Absessus though does seem to be resistant to nearly all antibiotics hence the crazy combinations used instead.
Any tips on inhaling Amikacin? I find the taste etc all fine but its certainly made my voice hoarse and chest a little tighter. Got to persevere!
As for exercise I think it is 100% essential to do as much as you physically can, get air right down to the depths where this guy grows. Surely a stronger body too will help all sorts.
So now I'm home and slowly getting used to the orals these are Clarithromycin, Minocyclin and Moxifloxacin plus nebulised Amikacin for 18 mths.
Michael re sensitivity testing the way they explained it to me is the bug can often respond differently in the lung when bombarded with several antibiotics, so they can never quite tell how resistant it really is. M.Absessus though does seem to be resistant to nearly all antibiotics hence the crazy combinations used instead.
Any tips on inhaling Amikacin? I find the taste etc all fine but its certainly made my voice hoarse and chest a little tighter. Got to persevere!
As for exercise I think it is 100% essential to do as much as you physically can, get air right down to the depths where this guy grows. Surely a stronger body too will help all sorts.
I have Mac also. I noticed it was starting to make my lung function decline. I was coughing up blood in cups. Its was crazy. I recently started running out side for 40,mins 3 times a week. I feel amazing. I was having problems talking to customers at work. I would get out of breath from the talking bit now it has been better and easier. Hope this helps. I'm not one for all the antibiotics. I avoid them til I totally need them. After a course of antibiotics I will have problems with my immune system for awhile. I will get sick more often. That's why I choose the natural choices until there is no other course but antibiotics.
if you have it try doing albuterol before your amikacin
That's my understanding as well with regards to sensitivity testing. Mine shows that my abscessus is resistant to Amikacin, but this is the most effective drug for me. I've been told they use it to get ideas of what drugs to try. However, it is quite discouraging to see all the "resistant" labels next to all or most of the drugs.
I haven't been on inhaled Amikacin in a while, but I think I did OK with it. I agree with Katie's suggestion that you use Albuterol -- either nebulized or inhaled beforehand. I used to do hypertonic saline before my Amikacin although I don't know if that helped with this issue or not.
Semnle34 - my son has been sent from New England to National Jewish in Denver because they are supposedly the world experts on MCB. He has had it for nearly 7 years. Currently he is being evaluated for transplant. MCB is a disqualifying bacteria, but Boston and Columbia agreed to see him. He is now in the in-depth assessment process in Boston. In order to be considered the MCB has to be adequately controlled and he has to be sick enough (he's on O2 24/7). He is sickest when the MCB is out of control. It's going to be like threading a needle from space, but he is being evaluated. We think the involvement of National Jewish is why he's even being considered. Good luck to you. I'm sorry that you are in pain and are exhausted. It's a terrible disease and a terrible bug.
Michael Klein
New member
Sorry for the late response! And yes windex I get a lot of my information from journal articles and of course CF appointments too.
Michael Klein
New member
I wish your son the best Donin! Another place to maybe look at if Boston and Columbia don't pan out would be Seattle at the University of Washington Medical Center. The CF Clinic is in the medical centers Specialties Clinic.
Thanks Michael. The wait time is much longer in New England than elsewhere and people get much, much sicker before being prioritized high enough to get lungs. This risks someone becoming too sick and getting voted off the island. After everything is done at Boston we are going to look at Duke. I'm glad to know about Seattle too. We were vastly more impressed with Mass General than Columbia. They weren't comparable in anyway.
I saw an Infectious Disease doctor today. Since I am resistant to all the oral meds the doc is going to put me back on IV meds. It will be a long course of IV Amikacin and Cefoxitin along with oral Biaxin (Clarithromycin). He thinks somewhere up to 6 months. Its crazy to think that this bacteria is unpreventable and is all around us. Its in our water supply and in the soil. I wish everyone best of luck dealing with this. Lets keep this post going as more meds come out and treatment regiments change for everyone. I know that for me this forum has helped me come to terms that this bacteria is not going away but there are treatment options out there. Im not looking forward to the next 6 months of IV's but I certainly look forward to feeling better soon. My doctors are def the best and continue to seek out the best information out there. Thank you everyone for posting your information (IV)(PRAYING)
Good luck with your treatment 
I am on the same regimine - except I have inhaled amikacin not I.V. because I have diabetes and one of the possible side effects is renal damage.
I have been told 12-18 months.
Most likely 6 months to kill the bacteria, then an additional 6-12 months to make sure. At least that is what I.D. tells me. Make sure they collaborate with your CF docs too and they work as a team. Treating a normal person with m.absessus is going to be different than treating a CFer with it.
Also, I don't know if you have this problem or not but I take actigall for my liver because of CF, but keep an eye on your liver enzyme levels because biaxin can raise them. That is what I am going through now and it's come to a point where they make take me off it. Which would stink because biaxin is a staple in m.absessus treatment and I am only 3 months in.
I am on the same regimine - except I have inhaled amikacin not I.V. because I have diabetes and one of the possible side effects is renal damage.
I have been told 12-18 months.
Most likely 6 months to kill the bacteria, then an additional 6-12 months to make sure. At least that is what I.D. tells me. Make sure they collaborate with your CF docs too and they work as a team. Treating a normal person with m.absessus is going to be different than treating a CFer with it.
Also, I don't know if you have this problem or not but I take actigall for my liver because of CF, but keep an eye on your liver enzyme levels because biaxin can raise them. That is what I am going through now and it's come to a point where they make take me off it. Which would stink because biaxin is a staple in m.absessus treatment and I am only 3 months in.
I've noticed a couple of you say that you had tightness in your chest, I think it was after the Amikacin? My son has started to have chest pains recently and I'm wondering if it's due to that. He's been on treatment for 2 months now and never said a thing about it before. 2 weeks ago he went to the nurse at school because his "lungs hurt", he said it felt like a constant pressure on his lungs. I took him home and had him do his albuterol and a hypersal treatment. Eventually he was fine, then it happened again a week later. I called his CF office about it to find out if it could be a side effect of the meds but they said it wasn't. So I took him to his pediatrician who also didn't see any cause for it but we had an xray and EKG done just to be sure it wasn't something else. This morning before school he complained about his lungs hurting again, I had him to his albuterol and reminded him that when it happened before he eventually got better. I started writing down when he was having the pains and it's been the morning after doing his Amikacin at night, he inhales it. Do ya'll normally have the tightness in your chest right after the treatment? I just thought it was weird that it's starting after 2 months of treatment and it's not every time.