Mycobacterium Abscessus

[ToriMom]

Hello Friends!
Well...we have gotten some bad news today. My sixteen-year-old daughter is now culturing Myco Abscessus. I am actually not that surprised about it given her recent months of relentless fatigue and night sweats. So now we go back to the infectious disease doctor to get his recommendations for what to do next. I just need some pats on the back and maybe if you have battled this beast...some good outcomes. I am VERY anxious about the side effects from the triple antibiotic regimen and the possibility that the treatment wont be worth it because this NTM will just RETURN!

Thanks for listening. I think the plan will likely be to start the three typical orals, but I have read on here about also starting Amikacin I.V.s so I will likely ask about that too. The one positive is that school is nearly out for the year so we can start the plan during some quiet months when she can just rest. Although she is homeschooled--she still stresses about her grades when she falls behind due to illness.
Michelle

 

[Aboveallislove]

So sorry mom. Prayers for you both. I know some older threads had some great info on this. Hugs and prayers
Love

 

[Jshet22]

So sorry to hear this, your daughter and you are in my prayers. God bless you both.stay strong.

 

[kgfrompa]

I am so sorry ,I will keep her in my prayers

 

[calebf]

Hi Michelle,

I received the same bad news 3 years ago in June 2014. I'm 28 years old. I was infected with M. Abscessus in April 2014 while on vacation in the Caribbean. At the end of May I was coughing up blood. I was hospitalized and they cultured M. Abscessus in early June 2014. My FEV1 baseline before M. Abscessus was around 88-90%. I had maxed at 94% in the 12 months before. When I was first hospitalized for the infection FEV1 dropped to around 60%. Initially I was put on 3 IV antibiotics - Aztreonam, Cipro, and Cefoxitin. A few months later I had a reaction to Cefoxitn. I was put in the ICU for a week due for pulmonary edema and had a full body rash due to the reaction. Cefoxitin is somehow related to penicillin which I am allergic to. In all I was hospitalized 5 times in 2014. I came off the IVs and was put on Amikacin inhaled 1x daily, Zyvox (linezolid) oral 2x daily, and azithromycin oral 2x daily. I was put on Orkambi in August 2015 and signed up for a gym around the same time. FEV1% had rebounded to about 75-79%. With Orkambi and consistent exercise (80% weight training. 20% cardio) I was able to increase to about 84% in November 2016. My last two cultures have been negative and I've successfully discontinued the oral antibiotics. I'm still on the inhaled Amikacin, but hope to shed that too this year.

Overall M. Abscessus sucks. It's a scary bug. I've read the studies and literature. Doctors are still figuring out how to combat it. The regimen I was put on is pretty typical. Outcomes vary but in my experience it is very much survivable if you are disciplined and committed to fighting it.

For me Orkambi combined with consistent exercise worked wonders. Consistency is key. I hired a trainer (not necessary but will keep you honest) and treated going to the gym like another kind medication I was required to take 3-4 times weekly. Most of what I did and continue to do is weight training - squats, deadlifts, abs, and upper body, etc. Very little cardio. I dabbled in HITT as well. Recommend she do what she enjoys so she does it consistently. I recommend reading this article on exercise in CF - http://www.medscape.com/viewarticle/745452 - it shows exercise can have disease modifying effects.

With the heavy-weight antibiotics hydration and weight maintenance can be difficult cause they kill gut flora. My stools were not solid for 3 years. I was drinking about a gallon/day of water while on the orals. Stay on top of the water. Probiotics are of course a must, but hardly a silver bullet. I recommend eating greens (spinach, kale, etc) as if they are medicine. This will help from a nutrition perspective and inject fiber into the gut to mitigate the effects of antibiotics.

I took a lot of naps. I have a high stress job at an advertising agency where I often have to pull long hours. I actually sold my house and moved to an apartment a block from work to minimize commute time and maximize sleep time. Best move of my life. Except for the hospitalizations I did not miss work. I did IVs at my desk and worked from home a lot initially.

The fear and unknowns can be overwhelming at times but keep your head up! It can be frustrating and demoralizing. I had one or two negative cultures followed by positive cultures. M. Abscessus is absolutely beatable with patience, focus, and discipline. It's taken me about 3 years.

Caleb

 

[sj18]

My name is Samantha I'm 26 years old I had this bacteria also for about a year but I been free since 6 months. I was on Azithromycin and zyvox and levequin also Amikacin nebulizer which I barely did cuz I am stubborn like that lol my fev 1 was at 38% and now at 60% also now I'm on orakambi. I went through a lot with the antibiotics I had very bad stomach problems I got bad acne and also the Zyvox gave me neuropathy in my feet that will not go away even though I'm no longer been on it. It was a hard fight but would God I got through it so I just want you to know and to tell your daughter that it can get better and it will go away it only took me months for it to go away so with God all things are possible just praying and tell her to stay strong and weigh out the pros and cons of the medicines. I wish I didn't get neuropathy but I have to keep praying. For god to take it away if you have questions or wanna talk let me know

 

[Hardak]

I've been battling this for about 12 months now. I took me nearly 9 months to find a med regimeent I can tollorate. I'm on Clofazimine and Linezolid now to deal with it (two orals) Most all the IV's hit me with massive nausia or worse. Not going to sugar coat this one, its going to be bad, and your going to want to go for erradication. I've had alot more issues with hamoptasis when the infection load was nearing its peak. IF you can be active do so and keep your Vit D levels up. Not sure what clinic your seen in but they should send a sample off for sensativity testing. That in and of its self is going to take a long time to come back. Think mine took 6 or 7 months. There are only two labs in the country that will test this bug for the "how to kill it" question.
Being younger should help fight it off, and I'm sure her CF is less advanced then mine which will go along ways to getting erradication. I know UW medical center in Seattle has had at least one person clear this microbe from there system. I hope your family finds a treatment that works and things start turning arround for you and yours.

 

[carolinen]

So sorry for your bad news.
I was diagnosed with abscessus just over 3 years ago. I'm in hospital right now, to start another round of ivs. You mention oral therapy, but the more usual plan is to try for eradication with a regime involving at least some ivs. I won't pretend- the iv regimes are hard, with nausea a significant side effect. but if she can tough out the first couple of weeks, the side effects do lessen. Sensitivities are not the be all and end all - the bug may be sensitive on the petri dish, but not inside a real person, and vice versa. I have had meaningful clinical responses to drugs that my bug was officially not sensitive to. nutrition, vitamins, probiotics and exercise are really important, as many have mentioned. One of the things you have to think about is whether it's really realistic for her to expect to study while experiencing so many side effects- the fatigue and malaise of both the infection and the drugs is pretty significant. I give myself permission to think of iv times as real 'down time' I do gentle things that give me pleasure, and the only things I stick to relentlessly are exercise and nutrition. My abscessus has not been eradicated, and never will be, but I am having really good quality of life between treatments, and have gone as long as ten months treatment free between them.I wish you and your daughter courage and resilience, and a good outcome from treatment. If you have any queries about specific drugs do ask- I've tried most of them

 

[ToriMom]

I want to thank everyone who has responded to me. I really needed to hear some personal stories from other CF patients. Thank you for taking the time to write. So far I've called the infectious disease office multiple times with no success on reaching them to book her an appointment. It took months for these cultures to even grow out the necessary information, and now I expect we will have to wait for sensitivity results. From my estimate it will be almost a year from the time she acquired the Abscessus to when she would start the regimen. That seems so so so long! We have an apppointment in about 10 days with her regular CF docs--I will ask them at that time for more clarity on this process. I don't understand the "smear negative" or "smear positive" information. Also, everyone seems very calm and I'm hearing "we don't always treat these bacteria unless they are causing problems." This is confusing! Is this a bug that goes into "remission" and just lives in there quietly and at other times flares up? It seems like a bad idea to let it just sit in her lungs???
Thanks again for all your support!
Michelle

 

[carolinen]

dear Michelle. i can well understand your worry about waiting so long for a plan. But this bug, though horrible, is a 'slow burner' and as treatment is complex and not without side effects it pays to wait for maximum information and a clear and logical plan. in particular the sensitivities will help choose the best antibiotic combination.
I can explain about smear positive/negative.
when the sputum sample is received it is smeared on a slide and stained and looked at under a microscope. if mycobacteria are seen, then is called smear positive. if mycobacteria are not seen it is smear negative. But smear negative does not mean there is no infection- sometimes a smear negative sample , when cultured (ie grown on in lab conditions) will show the abscessus- this is called culture positive. Some physicians feel that being smear positive means there is a higher load of infection than just being culture positive, that seems to make sense,but there is no clear evidence for this.
Just to complicate things, some patients have abscessus in their sputum but remain really well, and most doctors will advocate a watch and wait policy for them.if you have symptoms - increased sputum, deteriorating lung function, night sweats, weight loss, combined with positive sputum, then that is an indication to treat.

 

[calebf]

I have heard the same thing from my docs about discontinuing treatment if I'm well (even if the culture is still positive). If there is no detectable decline or symptoms then they are going to try to keep their powder dry. The antibiotics used to treat M. Abscessus are heavy weight. If the bacteria develops resistance to these antibiotics then their short list of options gets much shorter. This bug has already been categorized by some as a "superbug", docs don't want to get into a position where it's untreatable.

I know I've said it before but it's worth reiterating, if your daughter can handle any physical activity then I highly recommend she work up to exercising 3-4 times/week. Pushing myself to go to the gym was brutal at first because of how bad I felt, but now that I've pushed through it the lung function and quality of life gains are more than worth the effort.

It's worth mentioning that this is mostly a mental game. 16 years old is a vulnerable age for anyone but especially a CFer. Particularly a CFer that needs to be committed to fighting a tough bug like M. Abscessus. I was in no mindset to fight a serious bug at that age. Not until I had moved out and was 22 did I really start to take my disease seriously. I drank and even smoked in defiance of my disease until my health bottomed out and I was hospitalized. Even after I came to my senses I was stubborn about doing certain things like properly rinsing neb cups (which likely led to my M. Abscessus infection). If I had to point to the greatest risk to CFers it's the transition to owning their disease while they're 12-22 years old. You may want to talk to her docs about how to make that transition sooner and how to make it as smooth as possible. The best shot anyone has at beating a bug like this is if they fully own it.

 

[ryry11]

Hey- I was diagnosed with m. abcessus in January 2015, didn't start treatment until November 2015 (after a few months of just feeling crappy) and was on treatment until early June 2016. I won't lie- the treatment SUCKS. One of the IVs they gave me made me vomit 10-12 times a day until we had to pull me off of it because I was fainting I was so hungry. Amikacin gave me some high-frequency hearing loss.

Generally, the plan at first is 2 IVs and an oral for 3-6 months, then switch to nebulized Amikacin and 2 orals for 12-18 months. I'm on 3 orals because I couldn't tolerate the Amikacin neb. Gave me REALLY terrible bronchospasms/coughed 'til I threw up every time I took it.

Good news: I'm almost a year clear!! I got my first clear culture in May 2016 and I'm counting down the days until this next culture comes back and I'm declared cured. Yeah, it will come back, but I feel a thousand times better than I did a year ago. The treatment is terrible, and I would not have said it was worth it last winter, but if you have a good ID team that works with your CF team, it's doable. Also good news: I stayed in law school, finished, and graduated while on IVs.

It'll be okay.

 

[ToriMom]

Wow!
I'm inspired by the personal stories on this thread...especially those who managed to keep their jobs (or school or families) going through the treatment. Thanks for continuing to read our thread and for all the replies. My only update is that we did get an appointment scheduled for May 17th for the infectious disease doctor. One day at a time...