Acid fast baccilis

[Murgie]

If anyone has the AFB mycobacterium growing PLEASE write and tell me what it is caused from ( Other than tuberculosis, the skin test was negative), We will not know for 6 more weeks or longer the cause or treatment and I am certainly concerned.
Can this be treated or is this the start of a major lung decline?

 

[Murgie]

If anyone has the AFB mycobacterium growing PLEASE write and tell me what it is caused from ( Other than tuberculosis, the skin test was negative), We will not know for 6 more weeks or longer the cause or treatment and I am certainly concerned.
Can this be treated or is this the start of a major lung decline?

 

[Murgie]

If anyone has the AFB mycobacterium growing PLEASE write and tell me what it is caused from ( Other than tuberculosis, the skin test was negative), We will not know for 6 more weeks or longer the cause or treatment and I am certainly concerned.
<br />Can this be treated or is this the start of a major lung decline?

 

[ej0820]

hey there!

mycobacterium is one of those bugs that can be found pretty much anywhere. It's in dirt, moist places, etc. It can commonly be found in improperly cleaned medical devices, too. Do you know what the bacteria actually is? AFB mycobacteria can be MAC (mycobacterium avium complex), Mycobacterium abscessus, and a few others. M. abscessus is the more difficult one to treat. I've culutred that off and on for about 4 years now (maybe more). I am currently being treated for it as it's started causing me a lot of problems (fevers, shortness of breath, tiredness). I've been on IVs for it for the last 6 months. I was treated for MAC about 5 years ago and I haven't cultured it since.

I won't lie or sugar coat it for you. It can be treated, but the treatment course can be long and daunting. If it's MAC, a long course of oral abx can do the trick. If it's something else, like M. abscessus, IVs/nebs are often the only choice as it's a pretty tough bug. That's why I've been on IVs for so long, too. You'll have to wait it out and see, and talk with the doc, though. I've met CFers who culture M. abscessus and it's never treated simply because it doesn't give them any problems.

Good luck and let us know how things go!

 

[ej0820]

hey there!

mycobacterium is one of those bugs that can be found pretty much anywhere. It's in dirt, moist places, etc. It can commonly be found in improperly cleaned medical devices, too. Do you know what the bacteria actually is? AFB mycobacteria can be MAC (mycobacterium avium complex), Mycobacterium abscessus, and a few others. M. abscessus is the more difficult one to treat. I've culutred that off and on for about 4 years now (maybe more). I am currently being treated for it as it's started causing me a lot of problems (fevers, shortness of breath, tiredness). I've been on IVs for it for the last 6 months. I was treated for MAC about 5 years ago and I haven't cultured it since.

I won't lie or sugar coat it for you. It can be treated, but the treatment course can be long and daunting. If it's MAC, a long course of oral abx can do the trick. If it's something else, like M. abscessus, IVs/nebs are often the only choice as it's a pretty tough bug. That's why I've been on IVs for so long, too. You'll have to wait it out and see, and talk with the doc, though. I've met CFers who culture M. abscessus and it's never treated simply because it doesn't give them any problems.

Good luck and let us know how things go!

 

[ej0820]

hey there!
<br />
<br />mycobacterium is one of those bugs that can be found pretty much anywhere. It's in dirt, moist places, etc. It can commonly be found in improperly cleaned medical devices, too. Do you know what the bacteria actually is? AFB mycobacteria can be MAC (mycobacterium avium complex), Mycobacterium abscessus, and a few others. M. abscessus is the more difficult one to treat. I've culutred that off and on for about 4 years now (maybe more). I am currently being treated for it as it's started causing me a lot of problems (fevers, shortness of breath, tiredness). I've been on IVs for it for the last 6 months. I was treated for MAC about 5 years ago and I haven't cultured it since.
<br />
<br />I won't lie or sugar coat it for you. It can be treated, but the treatment course can be long and daunting. If it's MAC, a long course of oral abx can do the trick. If it's something else, like M. abscessus, IVs/nebs are often the only choice as it's a pretty tough bug. That's why I've been on IVs for so long, too. You'll have to wait it out and see, and talk with the doc, though. I've met CFers who culture M. abscessus and it's never treated simply because it doesn't give them any problems.
<br />
<br />Good luck and let us know how things go!

 

[momtoemily]

Like Erin said, those are the areas I have learned about where it is found.
My daughter, Emily, cultured m. abscessus at 5....didn't culture it again until she was 9 (November 2009)...it showed up again in November 2010 and we treated it in Feb/Mar of this year for 6 weeks....went to get the picc line out and her PFTs had dropped from 93% to 74%....so we are back in the hospital right now and did a bronch on Friday....the m. abscessus has already shown up again....
I read on these forums that some people are able to get rid of it others, not...I just worry about the rapid loss in PFTs...I want to keep her baseline as high as possible for as long as possible, of course. So I think the answer to your question is it depends from person to person as to how it effects the lung function.
I don't know our next steps, yet...her issues with this are concentrated in her lower right lobe...which is a good thing I guess....

 

[momtoemily]

Like Erin said, those are the areas I have learned about where it is found.
My daughter, Emily, cultured m. abscessus at 5....didn't culture it again until she was 9 (November 2009)...it showed up again in November 2010 and we treated it in Feb/Mar of this year for 6 weeks....went to get the picc line out and her PFTs had dropped from 93% to 74%....so we are back in the hospital right now and did a bronch on Friday....the m. abscessus has already shown up again....
I read on these forums that some people are able to get rid of it others, not...I just worry about the rapid loss in PFTs...I want to keep her baseline as high as possible for as long as possible, of course. So I think the answer to your question is it depends from person to person as to how it effects the lung function.
I don't know our next steps, yet...her issues with this are concentrated in her lower right lobe...which is a good thing I guess....

 

[momtoemily]

Like Erin said, those are the areas I have learned about where it is found.
<br />My daughter, Emily, cultured m. abscessus at 5....didn't culture it again until she was 9 (November 2009)...it showed up again in November 2010 and we treated it in Feb/Mar of this year for 6 weeks....went to get the picc line out and her PFTs had dropped from 93% to 74%....so we are back in the hospital right now and did a bronch on Friday....the m. abscessus has already shown up again....
<br />I read on these forums that some people are able to get rid of it others, not...I just worry about the rapid loss in PFTs...I want to keep her baseline as high as possible for as long as possible, of course. So I think the answer to your question is it depends from person to person as to how it effects the lung function.
<br />I don't know our next steps, yet...her issues with this are concentrated in her lower right lobe...which is a good thing I guess....

 

[Murgie]

Hey Erin and Cheryl,
Thanks for the information. I will not know for 3-5 weeks what is growing, thus far we just know its acid fast bacillus. Sams fatigue level is high, and he is back to not feeling well at all, whole body aches, coughing etc. I hope his lung function is not declining this quick, I agree with cheryl that I want to keep them up as long as we possible can. Thanks for your input. I do have a question on the 6 month treatment with iv's. Were you actually hospitalized for 6 months or was it at home iv?. wow my heart breaks for our cfers and all they endure!

 

[Murgie]

Hey Erin and Cheryl,
Thanks for the information. I will not know for 3-5 weeks what is growing, thus far we just know its acid fast bacillus. Sams fatigue level is high, and he is back to not feeling well at all, whole body aches, coughing etc. I hope his lung function is not declining this quick, I agree with cheryl that I want to keep them up as long as we possible can. Thanks for your input. I do have a question on the 6 month treatment with iv's. Were you actually hospitalized for 6 months or was it at home iv?. wow my heart breaks for our cfers and all they endure!

 

[Murgie]

Hey Erin and Cheryl,
<br />Thanks for the information. I will not know for 3-5 weeks what is growing, thus far we just know its acid fast bacillus. Sams fatigue level is high, and he is back to not feeling well at all, whole body aches, coughing etc. I hope his lung function is not declining this quick, I agree with cheryl that I want to keep them up as long as we possible can. Thanks for your input. I do have a question on the 6 month treatment with iv's. Were you actually hospitalized for 6 months or was it at home iv?. wow my heart breaks for our cfers and all they endure!

 

[momtoemily]

We are starting to treat Emily's m. abscessus again, as I write this. After two weeks of treating pseudo and staph, which never really appeared in cultures and after her lung function seems stuck in the mid 80s, we are going to treat the m. abscessus and aspergillus. We will do this for six weeks and see what happens....we do the IVs at home after levels and tolerability are established in the hospital. Hopefully we will be home by Easter sunday or monday....

 

[momtoemily]

We are starting to treat Emily's m. abscessus again, as I write this. After two weeks of treating pseudo and staph, which never really appeared in cultures and after her lung function seems stuck in the mid 80s, we are going to treat the m. abscessus and aspergillus. We will do this for six weeks and see what happens....we do the IVs at home after levels and tolerability are established in the hospital. Hopefully we will be home by Easter sunday or monday....

 

[momtoemily]

We are starting to treat Emily's m. abscessus again, as I write this. After two weeks of treating pseudo and staph, which never really appeared in cultures and after her lung function seems stuck in the mid 80s, we are going to treat the m. abscessus and aspergillus. We will do this for six weeks and see what happens....we do the IVs at home after levels and tolerability are established in the hospital. Hopefully we will be home by Easter sunday or monday....
<br />

 

[Murgie]

Hi Cheryl,
Sorry to hear what you are going through with Emily. I am curious to hear about the home IV's. Tell me what they send you home with and if she has a port or just a picc line. I would like that option when they determine which AFB he is growing.
Sam also cultures staff, mrsa, psedomonas, aspergillus , but intermittently.
I hope you can make it home for Easter!!!

 

[Murgie]

Hi Cheryl,
Sorry to hear what you are going through with Emily. I am curious to hear about the home IV's. Tell me what they send you home with and if she has a port or just a picc line. I would like that option when they determine which AFB he is growing.
Sam also cultures staff, mrsa, psedomonas, aspergillus , but intermittently.
I hope you can make it home for Easter!!!

 

[Murgie]

Hi Cheryl,
<br /> Sorry to hear what you are going through with Emily. I am curious to hear about the home IV's. Tell me what they send you home with and if she has a port or just a picc line. I would like that option when they determine which AFB he is growing.
<br />Sam also cultures staff, mrsa, psedomonas, aspergillus , but intermittently.
<br />I hope you can make it home for Easter!!!