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,
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,
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.
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.
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.
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.
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?
I have just been diagnosed with mycobacterium abscessus complex, slow growing non-infectious TB. Lab is supposed to be doing drug sensitivity testing to come up with a multi-drug cocktail. Is anybody else in the Phoenix area? Mayo will not accept my insurance. I may have to change next year. I want a 2nd opinion for drug treatment, but don't know how to proceed to find someone who specializes in this. Am conferencing with my GP next week. He's in the Banner Health system here. I was told the cocktail could result in diminished lung capacity. Has anyone else experienced this? Does capacity come back after you stop treatment? Sounds like this is going to be a very tough year. Glad I found this group.
You might want to join the Mac and Bronchiectasis support group on this website, as many people there are being treated for NTMs. There's a second website that also might be worth joining: https://www.bronchiectasisandntminitiative.org.
Here's a list of NTM care centers in the USA. Best of luck to you. https://ntminfo.org/care-centers/
You might want to join the Mac and Bronchiectasis support group on this website, as many people there are being treated for NTMs. There's a second website that also might be worth joining: https://www.bronchiectasisandntminitiative.org.
Here's a list of NTM care centers in the USA. Best of luck to you. https://ntminfo.org/care-centers/
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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,
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2 ReactionsThank 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.
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1 ReactionYW, where are you receiving treatment, if you don’t mind sharing?
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.
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.
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1 ReactionThis 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?
I have just been diagnosed with mycobacterium abscessus complex, slow growing non-infectious TB. Lab is supposed to be doing drug sensitivity testing to come up with a multi-drug cocktail. Is anybody else in the Phoenix area? Mayo will not accept my insurance. I may have to change next year. I want a 2nd opinion for drug treatment, but don't know how to proceed to find someone who specializes in this. Am conferencing with my GP next week. He's in the Banner Health system here. I was told the cocktail could result in diminished lung capacity. Has anyone else experienced this? Does capacity come back after you stop treatment? Sounds like this is going to be a very tough year. Glad I found this group.
You might want to join the Mac and Bronchiectasis support group on this website, as many people there are being treated for NTMs. There's a second website that also might be worth joining: https://www.bronchiectasisandntminitiative.org.
Here's a list of NTM care centers in the USA. Best of luck to you.
https://ntminfo.org/care-centers/
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Helpful -
Hug
1 ReactionThank you so much. I will check into these.
You are welcome. I forgot to mention the NTM connect online group. Can join here under the communities tab: ntminfo.org