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sensitivities on myco. abscessus

T

TonyaH

Guest
I am wondering if anyone can give me some insight as to what is taking so long to get the sensitivities on Andrew's mycobacterium abscessus. He has had a picc line in since the 19th of July which we used for 3 weeks of abx for pa. But in the meantime, we are also waiting to find out what to use on the myco. On August 10th we were told it may be a couple of weeks, but now it is over three weeks and still no answers. Did it take all of you as long to know how to treat yours? We are getting worried that the line is going to give out on us.
 
T

TonyaH

Guest
I am wondering if anyone can give me some insight as to what is taking so long to get the sensitivities on Andrew's mycobacterium abscessus. He has had a picc line in since the 19th of July which we used for 3 weeks of abx for pa. But in the meantime, we are also waiting to find out what to use on the myco. On August 10th we were told it may be a couple of weeks, but now it is over three weeks and still no answers. Did it take all of you as long to know how to treat yours? We are getting worried that the line is going to give out on us.
 
T

TonyaH

Guest
I am wondering if anyone can give me some insight as to what is taking so long to get the sensitivities on Andrew's mycobacterium abscessus. He has had a picc line in since the 19th of July which we used for 3 weeks of abx for pa. But in the meantime, we are also waiting to find out what to use on the myco. On August 10th we were told it may be a couple of weeks, but now it is over three weeks and still no answers. Did it take all of you as long to know how to treat yours? We are getting worried that the line is going to give out on us.
 

Mallymookcf

New member
when i was growing micobacterium abcessus back in 2003, they gave me cefoxitin, zyvox, and i believe the 3rd one was moxifloxin (all IVs of course)...dont know if differnet people's abcessus is sensitive to different drugs, but these worked great! i have not grown it ever since i finished treatment...even in a detatiled culture from a bronch..they didnt find any sign of it!!! God is so good!!!!
Good luck i hope his line lasts!!!
God Bless!
 

Mallymookcf

New member
when i was growing micobacterium abcessus back in 2003, they gave me cefoxitin, zyvox, and i believe the 3rd one was moxifloxin (all IVs of course)...dont know if differnet people's abcessus is sensitive to different drugs, but these worked great! i have not grown it ever since i finished treatment...even in a detatiled culture from a bronch..they didnt find any sign of it!!! God is so good!!!!
Good luck i hope his line lasts!!!
God Bless!
 

Mallymookcf

New member
when i was growing micobacterium abcessus back in 2003, they gave me cefoxitin, zyvox, and i believe the 3rd one was moxifloxin (all IVs of course)...dont know if differnet people's abcessus is sensitive to different drugs, but these worked great! i have not grown it ever since i finished treatment...even in a detatiled culture from a bronch..they didnt find any sign of it!!! God is so good!!!!
<br />Good luck i hope his line lasts!!!
<br />God Bless!
 

Mallymookcf

New member
also i would call and see what is taking so long, and make sure if your hospital sent it out for further culturing, that the ball didnt get dropped somewhere by accident!
 

Mallymookcf

New member
also i would call and see what is taking so long, and make sure if your hospital sent it out for further culturing, that the ball didnt get dropped somewhere by accident!
 

Mallymookcf

New member
also i would call and see what is taking so long, and make sure if your hospital sent it out for further culturing, that the ball didnt get dropped somewhere by accident!
 

theLostMiler

New member
NTM's I think can take up to 8 weeks. Mine arent often found until 7-8 weeks out... its a really slow growing bacteria (one reason its hard to catch and find). Plus if you have other growth choking it out, it can take a while too.

I do keep in contact with my docs, just to remind them I want to know when they know... so I would do that, but in my experience it does take 6-8 weeks at least for me. They may sometimes get initials at like 4 I think I have had a couple times.
 

theLostMiler

New member
NTM's I think can take up to 8 weeks. Mine arent often found until 7-8 weeks out... its a really slow growing bacteria (one reason its hard to catch and find). Plus if you have other growth choking it out, it can take a while too.

I do keep in contact with my docs, just to remind them I want to know when they know... so I would do that, but in my experience it does take 6-8 weeks at least for me. They may sometimes get initials at like 4 I think I have had a couple times.
 

theLostMiler

New member
NTM's I think can take up to 8 weeks. Mine arent often found until 7-8 weeks out... its a really slow growing bacteria (one reason its hard to catch and find). Plus if you have other growth choking it out, it can take a while too.
<br />
<br />I do keep in contact with my docs, just to remind them I want to know when they know... so I would do that, but in my experience it does take 6-8 weeks at least for me. They may sometimes get initials at like 4 I think I have had a couple times.
 

Jane

Digital opinion leader
It took months for us to find out. It is so frustrating to have to wait. Our doc put the boys on 3 ABX, then changed, then changed again when the sensitivities came in. They ended up with imipenem IV, rifabutin and bactrim.
 

Jane

Digital opinion leader
It took months for us to find out. It is so frustrating to have to wait. Our doc put the boys on 3 ABX, then changed, then changed again when the sensitivities came in. They ended up with imipenem IV, rifabutin and bactrim.
 

Jane

Digital opinion leader
It took months for us to find out. It is so frustrating to have to wait. Our doc put the boys on 3 ABX, then changed, then changed again when the sensitivities came in. They ended up with imipenem IV, rifabutin and bactrim.
 
T

TonyaH

Guest
Okay, I'll continue to be patient. But Andrew is about to lose it. He wants to get the party started asap so he can lose the line, as you can all imagine. I have been in touch with clinic every few days. Actually they are calling me with updates letting me know they are still waiting on results. I know the ball hasn't been dropped, but was just wondering if everyone has had the same issue with having to wait. I guess waiting longer does not necessarily mean it's multi-resisitant, which was what I was afraid of. Thanks everyone!
 
T

TonyaH

Guest
Okay, I'll continue to be patient. But Andrew is about to lose it. He wants to get the party started asap so he can lose the line, as you can all imagine. I have been in touch with clinic every few days. Actually they are calling me with updates letting me know they are still waiting on results. I know the ball hasn't been dropped, but was just wondering if everyone has had the same issue with having to wait. I guess waiting longer does not necessarily mean it's multi-resisitant, which was what I was afraid of. Thanks everyone!
 
T

TonyaH

Guest
Okay, I'll continue to be patient. But Andrew is about to lose it. He wants to get the party started asap so he can lose the line, as you can all imagine. I have been in touch with clinic every few days. Actually they are calling me with updates letting me know they are still waiting on results. I know the ball hasn't been dropped, but was just wondering if everyone has had the same issue with having to wait. I guess waiting longer does not necessarily mean it's multi-resisitant, which was what I was afraid of. Thanks everyone!
 

theLostMiler

New member
Like Jane said, sometimes my doctor put me on their best guess, from an old sensitivities, often they would try to wait just so they could prevent resistance issues... but if my symptoms were becoming worse, ie: fevers getting longer, more frequent etc, they had to do something. Most the time, only one or so of the abx would change in the middle. I imagine they dont want to guess initially b/c they have no idea since its the first time around.

I am so sorry he has had to have the picc in w/ nothing going on all this time.... I only had 2, 2 week periods where I wasnt doing abx, but needed to keep the picc in, I hated it. It was summer and I wanted to swim but alas never was able to. I went crazy. I got my port the following fall and I do love the fact that if they do a "test" run and we stop for a week or whatever, I am normal again.

And yes, longer times doesnt mean resistance here <img src="i/expressions/face-icon-small-smile.gif" border="0">

i dont know if I have mentioned it before, but I was told by *one* doctor (he was kinda a random one who was 'learning' on me while in house once) who said that M.A is known for really affecting appetite, which makess sense in my experience b/c that has probably been the ONE thing that I have struggled with the most since first culturing NTM. So watch his appetite, and if it starts going down, do something <b>immediately </b>whether it is appetite stimulants or what not... I always, always feel my best when eating (duh! right lol). But once my appetite goes down, its down until I get an appetite stimulant or g-tube feedings take a couple weeks to start getting my appetite up even.

sorry to be off topic a bit. but my favorite advice for people 'new' to NTM is appetite and maintaining the weight, I didnt understand that correlation near well enough and let my weight get waaaay to low which I know made me feel crapppier in general.

Oh and did you get the predisone issues worked out?
 

theLostMiler

New member
Like Jane said, sometimes my doctor put me on their best guess, from an old sensitivities, often they would try to wait just so they could prevent resistance issues... but if my symptoms were becoming worse, ie: fevers getting longer, more frequent etc, they had to do something. Most the time, only one or so of the abx would change in the middle. I imagine they dont want to guess initially b/c they have no idea since its the first time around.

I am so sorry he has had to have the picc in w/ nothing going on all this time.... I only had 2, 2 week periods where I wasnt doing abx, but needed to keep the picc in, I hated it. It was summer and I wanted to swim but alas never was able to. I went crazy. I got my port the following fall and I do love the fact that if they do a "test" run and we stop for a week or whatever, I am normal again.

And yes, longer times doesnt mean resistance here <img src="i/expressions/face-icon-small-smile.gif" border="0">

i dont know if I have mentioned it before, but I was told by *one* doctor (he was kinda a random one who was 'learning' on me while in house once) who said that M.A is known for really affecting appetite, which makess sense in my experience b/c that has probably been the ONE thing that I have struggled with the most since first culturing NTM. So watch his appetite, and if it starts going down, do something <b>immediately </b>whether it is appetite stimulants or what not... I always, always feel my best when eating (duh! right lol). But once my appetite goes down, its down until I get an appetite stimulant or g-tube feedings take a couple weeks to start getting my appetite up even.

sorry to be off topic a bit. but my favorite advice for people 'new' to NTM is appetite and maintaining the weight, I didnt understand that correlation near well enough and let my weight get waaaay to low which I know made me feel crapppier in general.

Oh and did you get the predisone issues worked out?
 
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