What is Non tuberculosis mycobacterium abscesses

Posted by jefck @jefck, Aug 12 11:29am

I have Non tuberculosis mycobacterium abscesses should I be worried?

Interested in more discussions like this? Go to the Lung Health Support Group.

I also have Abscessus. It’s a rarer mycobacterium and very difficult to treat. Antibiotic treatment usually requires at least one IV medication and two other antibiotics for many months. You should be concerned and educate yourself. I’m about 9 months since this diagnosis and still hunting for the right doctor. I was initially diagnosed with pseudomonas and had two different IV infusions that I did at home. Had a PICC line for third treatment after diagnosis of Abscessus. I did not tolerate the medication and treatment was discontinued. It’s not an easy journey, but there is a lot of information on here and other sites. Many recommend going to one of the specialty clinics like NJH Denver, Mayo, or University of Tyler. There is also the option of “watchful waiting” if your symptoms are minimal and lung damage isn’t a problem. It all needs the guidance of a knowledgeable physician. It is scary at first, but you just need to learn all you can and find the right doctors,

REPLY
@bamaqueen

I also have Abscessus. It’s a rarer mycobacterium and very difficult to treat. Antibiotic treatment usually requires at least one IV medication and two other antibiotics for many months. You should be concerned and educate yourself. I’m about 9 months since this diagnosis and still hunting for the right doctor. I was initially diagnosed with pseudomonas and had two different IV infusions that I did at home. Had a PICC line for third treatment after diagnosis of Abscessus. I did not tolerate the medication and treatment was discontinued. It’s not an easy journey, but there is a lot of information on here and other sites. Many recommend going to one of the specialty clinics like NJH Denver, Mayo, or University of Tyler. There is also the option of “watchful waiting” if your symptoms are minimal and lung damage isn’t a problem. It all needs the guidance of a knowledgeable physician. It is scary at first, but you just need to learn all you can and find the right doctors,

Jump to this post

Thank you so very much for your answer to my question. You have answered my questions I had. I have been told by my. Pulmonologist and infectious disease doctors it will be a long difficult process. But it is always better to hear from someone actually going through this. Thank you Jeff Kaplan.

REPLY

YW, where are you receiving treatment, if you don’t mind sharing?

REPLY
@jefck

Thank you so very much for your answer to my question. You have answered my questions I had. I have been told by my. Pulmonologist and infectious disease doctors it will be a long difficult process. But it is always better to hear from someone actually going through this. Thank you Jeff Kaplan.

Jump to this post

Hi Jeff - Yes, you need to do it! Have you also been diagnosed with Bronchiectasis or COPD?
If so, there are other (non-antibiotic) treatments like airway clearance that will help the medications to work better and slow the progress of lung disease.

REPLY
@sueinmn

Hi Jeff - Yes, you need to do it! Have you also been diagnosed with Bronchiectasis or COPD?
If so, there are other (non-antibiotic) treatments like airway clearance that will help the medications to work better and slow the progress of lung disease.

Jump to this post

Hi Sue
I haven’t been diagnosed with Bronchiectasis or COPD. I’ve been told I will be on 2-4 very strong harsh antibiotics for at least 2 years.

REPLY
@jefck

Hi Sue
I haven’t been diagnosed with Bronchiectasis or COPD. I’ve been told I will be on 2-4 very strong harsh antibiotics for at least 2 years.

Jump to this post

This is a long haul coming up, and you will have a lot of questions, do you have a pulmonologist or infectious disease doctor who is familiar with Mycobacteria abscessus infection? This will be very important, as it is a very rare infection, and you will need to be monitored closely throughout treatment. In addition, nearly everyone who gets this infection already has a lung condition, or is immuno-compromised, so the other conditions need to be taken into consideration as well.
We can provide peer support here, but are not medical professionals - you're going to need a good one "in your corner" over the next months.

Can you explain to us how this diagnosis came about?

REPLY
Please sign in or register to post a reply.