Mycobacterium abcsessus

Deb · May 10, 2011

I've seen on some of the other threads that there are several people with M-abscessus. Would be interested in knowing more. I just recently grew this. I was on IV Primaxin for 7 weeks until I started getting sick from it and had to stop.
Latest CT shows that nodules are decreased in size but there is now evidence of cavitation. This does not sound good at all.
Are others being treated? Can you ever get rid of this?

Deb · May 10, 2011

I've seen on some of the other threads that there are several people with M-abscessus. Would be interested in knowing more. I just recently grew this. I was on IV Primaxin for 7 weeks until I started getting sick from it and had to stop.
Latest CT shows that nodules are decreased in size but there is now evidence of cavitation. This does not sound good at all.
Are others being treated? Can you ever get rid of this?

Deb · May 10, 2011

I've seen on some of the other threads that there are several people with M-abscessus. Would be interested in knowing more. I just recently grew this. I was on IV Primaxin for 7 weeks until I started getting sick from it and had to stop.
Latest CT shows that nodules are decreased in size but there is now evidence of cavitation. This does not sound good at all.
Are others being treated? Can you ever get rid of this?

ej0820 · May 10, 2011

I've had the worst luck with this. I've been on IVs since October of last year and they aren't working. I'm on cefoxitin and tigecycline for this infection. It makes me feel really crummy. I hate to be the bearer of bad news, and this may not actually be everyone's case, but I've been told you can't get rid of it, you can only knock it back a bit. I was REALLY sick with it in 2008 (the fevers were unbelievable), then I got better. Off and on last year though, I kept getting fevers and general ickiness. My culture showed M. abscessus and has ever since. I've had only two CT scans and I don't think either really showed anything. I'm not sure, I think they just showed lung damage...but certainly not in any way to tell if it was caused by the mycobacterium or just CF progression. My CF doc isn't too keen with having CT scans done, especially multiple/frequent ones, due to the radiation exposure.

Do you have any symptoms with it? I've met CFers that culture it and their CF docs don't treat it because they don't have sort of side effects or symptoms (like fevers or night sweats). From what I understand, these people don't have any real trouble with it. Unfortunately, I'm the exact opposite. I get fevers frequently, both low and high grade, and I'm always tired and worn out...just to name a few.

Do you see an infectious disease doctor or just your regular CF doc? This past october was when my CF doc called an infectious disease doctor. She is the one who prescribed the IVs I'm on now and my CF doc is just sort of overseeing it. If you're really concerned or really sick with it, I would recommend seeing an infectious disease doctor.

I hope you have better luck with treating this bug than I do! PM me if you have other questions, I'd be happy to answer if I can!

ej0820 · May 10, 2011

I've had the worst luck with this. I've been on IVs since October of last year and they aren't working. I'm on cefoxitin and tigecycline for this infection. It makes me feel really crummy. I hate to be the bearer of bad news, and this may not actually be everyone's case, but I've been told you can't get rid of it, you can only knock it back a bit. I was REALLY sick with it in 2008 (the fevers were unbelievable), then I got better. Off and on last year though, I kept getting fevers and general ickiness. My culture showed M. abscessus and has ever since. I've had only two CT scans and I don't think either really showed anything. I'm not sure, I think they just showed lung damage...but certainly not in any way to tell if it was caused by the mycobacterium or just CF progression. My CF doc isn't too keen with having CT scans done, especially multiple/frequent ones, due to the radiation exposure.

Do you have any symptoms with it? I've met CFers that culture it and their CF docs don't treat it because they don't have sort of side effects or symptoms (like fevers or night sweats). From what I understand, these people don't have any real trouble with it. Unfortunately, I'm the exact opposite. I get fevers frequently, both low and high grade, and I'm always tired and worn out...just to name a few.

Do you see an infectious disease doctor or just your regular CF doc? This past october was when my CF doc called an infectious disease doctor. She is the one who prescribed the IVs I'm on now and my CF doc is just sort of overseeing it. If you're really concerned or really sick with it, I would recommend seeing an infectious disease doctor.

I hope you have better luck with treating this bug than I do! PM me if you have other questions, I'd be happy to answer if I can!

ej0820 · May 10, 2011

I've had the worst luck with this. I've been on IVs since October of last year and they aren't working. I'm on cefoxitin and tigecycline for this infection. It makes me feel really crummy. I hate to be the bearer of bad news, and this may not actually be everyone's case, but I've been told you can't get rid of it, you can only knock it back a bit. I was REALLY sick with it in 2008 (the fevers were unbelievable), then I got better. Off and on last year though, I kept getting fevers and general ickiness. My culture showed M. abscessus and has ever since. I've had only two CT scans and I don't think either really showed anything. I'm not sure, I think they just showed lung damage...but certainly not in any way to tell if it was caused by the mycobacterium or just CF progression. My CF doc isn't too keen with having CT scans done, especially multiple/frequent ones, due to the radiation exposure.
 
 Do you have any symptoms with it? I've met CFers that culture it and their CF docs don't treat it because they don't have sort of side effects or symptoms (like fevers or night sweats). From what I understand, these people don't have any real trouble with it. Unfortunately, I'm the exact opposite. I get fevers frequently, both low and high grade, and I'm always tired and worn out...just to name a few.
 
 Do you see an infectious disease doctor or just your regular CF doc? This past october was when my CF doc called an infectious disease doctor. She is the one who prescribed the IVs I'm on now and my CF doc is just sort of overseeing it. If you're really concerned or really sick with it, I would recommend seeing an infectious disease doctor.
 
 I hope you have better luck with treating this bug than I do! PM me if you have other questions, I'd be happy to answer if I can!

LouLou · May 10, 2011

Erin, Any idea how you got the M. Absessus. Sounds aweful. Just aweful. I feel your pain in your writing. I wish we could figure out how to get you feeling good again. Sorry sweetie!

LouLou · May 10, 2011

Erin, Any idea how you got the M. Absessus. Sounds aweful. Just aweful. I feel your pain in your writing. I wish we could figure out how to get you feeling good again. Sorry sweetie!

LouLou · May 10, 2011

Erin, Any idea how you got the M. Absessus. Sounds aweful. Just aweful. I feel your pain in your writing. I wish we could figure out how to get you feeling good again. Sorry sweetie!

beleache · May 10, 2011

Hi Debbie,
When I first got dxd w/ M. Abcesessus I was scared.. I talked to several ppl at that time & some of my fears were calmed a bit.
This is how it went for me.. About 3 yrs ago I was dxd w/ it. I had just changed centers & I dont know if my old center did the AFB test or not, I dont really remember that they did.
The new dr. didn't want to "go after it" right away due to the treatment being harsh & me having problems w/ ports/clots/kidneys ..
I was worried about this but trusted the dr. After a time my ct scan showed a cavity. I was talking to ppl & checking out info on the comp.. My dr/center is in NY but I wanted to get input from Denver National Jewish in Colorado.. They are experts in this. My dr. was fine w/ this.
So I went there & they started me on treatment which was IV Cefoxatin (sp) Oral Biaxin & inhaled Amikasin. I was on the IV for 7 mos straight along w/ the other 2 abx.. I am still, after 2 yrs on the oral & the inhaled..
I have gone to DNJ every 6 mos for the last 2 yrs & on my last visit in March 2011 the cavity has closed up ! Ty God !!
The bacteria has also weakened , i'll take it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ive been told that the bacteria cannot be killed completely but I think ive heard that it can, not positive about that though.
I also asked if waiting was what they would have done & they said yes, so that made me feel better that I trusted my dr. back in N.Y.
I hope i've answered some questions for you.. If you want to talk, PM me & I will give you my cell #..
Take care & Hang in there <img src="i/expressions/heart.gif" border="0"> joni

beleache · May 10, 2011

Hi Debbie,
When I first got dxd w/ M. Abcesessus I was scared.. I talked to several ppl at that time & some of my fears were calmed a bit.
This is how it went for me.. About 3 yrs ago I was dxd w/ it. I had just changed centers & I dont know if my old center did the AFB test or not, I dont really remember that they did.
The new dr. didn't want to "go after it" right away due to the treatment being harsh & me having problems w/ ports/clots/kidneys ..
I was worried about this but trusted the dr. After a time my ct scan showed a cavity. I was talking to ppl & checking out info on the comp..My dr/center is in NY but I wanted to get input from Denver National Jewish in Colorado.. They are experts in this. My dr. was fine w/ this.
So I went there & they started me on treatment which was IV Cefoxatin (sp) Oral Biaxin & inhaled Amikasin. I was on the IV for 7 mos straight along w/ the other 2 abx.. I am still, after 2 yrs on the oral & the inhaled..
I have gone to DNJ every 6 mos for the last 2 yrs & on my last visit in March 2011 the cavity has closed up ! Ty God !!
The bacteria has also weakened , i'll take it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ive been told that the bacteria cannot be killed completely but I think ive heard that it can, not positive about that though.
I also asked if waiting was what they would have done & they said yes, so that made me feel better that I trusted my dr. back in N.Y.
I hope i've answered some questions for you.. If you want to talk, PM me & I will give you my cell #..
Take care & Hang in there <img src="i/expressions/heart.gif" border="0"> joni

beleache · May 10, 2011

Hi Debbie,
When I first got dxd w/ M. Abcesessus I was scared.. I talked to several ppl at that time & some of my fears were calmed a bit.
This is how it went for me.. About 3 yrs ago I was dxd w/ it. I had just changed centers & I dont know if my old center did the AFB test or not, I dont really remember that they did.
The new dr. didn't want to "go after it" right away due to the treatment being harsh & me having problems w/ ports/clots/kidneys ..
I was worried about this but trusted the dr. After a time my ct scan showed a cavity. I was talking to ppl & checking out info on the comp..My dr/center is in NY but I wanted to get input from Denver National Jewish in Colorado.. They are experts in this. My dr. was fine w/ this.
So I went there & they started me on treatment which was IV Cefoxatin (sp) Oral Biaxin & inhaled Amikasin. I was on the IV for 7 mos straight along w/ the other 2 abx.. I am still, after 2 yrs on the oral & the inhaled..
I have gone to DNJ every 6 mos for the last 2 yrs & on my last visit in March 2011 the cavity has closed up ! Ty God !!
The bacteria has also weakened , i'll take it <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ive been told that the bacteria cannot be killed completely but I think ive heard that it can, not positive about that though.
I also asked if waiting was what they would have done & they said yes, so that made me feel better that I trusted my dr. back in N.Y.
I hope i've answered some questions for you.. If you want to talk, PM me & I will give you my cell #..
Take care & Hang in there <img src="i/expressions/heart.gif" border="0"> joni

Mallymookcf · May 10, 2011

i grew it in high school about 10 years ago. i was treated with IV cefoxitin, zosyn, and moxyfloxin...along with inhaled amikacin...and i want to say biaxin at some point too. the treatment was tough and my body eventually copuldnt take the ivs anymore...but i guess that was Gods way of saying i did not need them any more...because since then for almost 10 years i have not grown it anymore.initially, my pfts dropped drastically when i grew it but they came right back up once it was gone. i hope this gives you guys hope. i believe it was erraticated!!!

Mallymookcf · May 10, 2011

i grew it in high school about 10 years ago. i was treated with IVcefoxitin, zosyn, and moxyfloxin...along with inhaled amikacin...and i want to say biaxin at some point too. the treatment was tough and my body eventually copuldnt take the ivs anymore...but i guess that was Gods way of saying i did not need themany more...because since then for almost 10 years i have not grown it anymore.initially, my pfts dropped drasticallywhen i grew itbut they came right back up once it was gone. i hope this gives you guys hope. i believe it was erraticated!!!

Mallymookcf · May 10, 2011

i grew it in high school about 10 years ago. i was treated with IVcefoxitin, zosyn, and moxyfloxin...along with inhaled amikacin...and i want to say biaxin at some point too. the treatment was tough and my body eventually copuldnt take the ivs anymore...but i guess that was Gods way of saying i did not need themany more...because since then for almost 10 years i have not grown it anymore.initially, my pfts dropped drasticallywhen i grew itbut they came right back up once it was gone. i hope this gives you guys hope. i believe it was erraticated!!!

beleache · May 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: LouLou Erin, Any idea how you got the M. Absessus. Sounds aweful. Just aweful. I feel your pain in your writing. I wish we could figure out how to get you feeling good again. Sorry sweetie!</end quote></div>
Hey Lauren,
I was told that the shower head/faucet can contain certain bacteria & that when the room gets steamy & you breathe it in thats how you can get it.
I think good ventilation is important.. I think you can actually have testing done on your pipes/water .. There is a lot of info through the NTM site.. If you need more info let me know.
I dont know if there are other ways as well to contract it..
<img src="i/expressions/heart.gif" border="0"> joni

beleache · May 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: LouLou Erin, Any idea how you got the M. Absessus. Sounds aweful. Just aweful. I feel your pain in your writing. I wish we could figure out how to get you feeling good again. Sorry sweetie!</end quote>
Hey Lauren,
I was told that the shower head/faucet can contain certain bacteria & that when the room gets steamy & you breathe it in thats how you can get it.
I think good ventilation is important.. I think you can actually have testing done on your pipes/water .. There is a lot of info through the NTM site.. If you need more info let me know.
I dont know if there are other ways as well to contract it..
<img src="i/expressions/heart.gif" border="0"> joni

beleache · May 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: LouLou Erin, Any idea how you got the M. Absessus. Sounds aweful. Just aweful. I feel your pain in your writing. I wish we could figure out how to get you feeling good again. Sorry sweetie!</end quote>
Hey Lauren,
I was told that the shower head/faucet can contain certain bacteria & that when the room gets steamy & you breathe it in thats how you can get it.
I think good ventilation is important.. I think you can actually have testing done on your pipes/water .. There is a lot of info through the NTM site.. If you need more info let me know.
I dont know if there are other ways as well to contract it..
<img src="i/expressions/heart.gif" border="0"> joni

beleache · May 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Mallymookcf i grew it in high school about 10 years ago. i was treated with IV cefoxitin, zosyn, and moxyfloxin...along with inhaled amikacin...and i want to say biaxin at some point too. the treatment was tough and my body eventually copuldnt take the ivs anymore...but i guess that was Gods way of saying i did not need them any more...because since then for almost 10 years i have not grown it anymore.initially, my pfts dropped drastically when i grew it but they came right back up once it was gone. i hope this gives you guys hope. i believe it was erraticated!!!

</end quote></div>

Fantastic !!

beleache · May 10, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Mallymookcf i grew it in high school about 10 years ago. i was treated with IVcefoxitin, zosyn, and moxyfloxin...along with inhaled amikacin...and i want to say biaxin at some point too. the treatment was tough and my body eventually copuldnt take the ivs anymore...but i guess that was Gods way of saying i did not need themany more...because since then for almost 10 years i have not grown it anymore.initially, my pfts dropped drasticallywhen i grew itbut they came right back up once it was gone. i hope this gives you guys hope. i believe it was erraticated!!!

</end quote>

Fantastic !!

Mycobacterium abcsessus

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