NON-TUBERCULOUS MYCOBACTERIUM..?

[friendofall]

As a home health pediatric nurse, I have kiddos with MTB and take antibiotic treatments through either a PICC line or a port for 6-12 months at a time continuously. During the summer those with the PICC lines are able to use a product from drycorp to keep their lines dry to swim and bathe. Google drycorp. I hope this helps his summer some. I haven't met an ID doc that even knows about these yet so spread the word. I live in Texas and have used these once with one patient and it worked great. It was about $40.00. I think you had to get a dr.'s order for it, but thats not a problem. It was a big help. Good luck!!!

 

[friendofall]

As a home health pediatric nurse, I have kiddos with MTB and take antibiotic treatments through either a PICC line or a port for 6-12 months at a time continuously. During the summer those with the PICC lines are able to use a product from drycorp to keep their lines dry to swim and bathe. Google drycorp. I hope this helps his summer some. I haven't met an ID doc that even knows about these yet so spread the word. I live in Texas and have used these once with one patient and it worked great. It was about $40.00. I think you had to get a dr.'s order for it, but thats not a problem. It was a big help. Good luck!!!

 

[friendofall]

As a home health pediatric nurse, I have kiddos with MTB and take antibiotic treatments through either a PICC line or a port for 6-12 months at a time continuously. During the summer those with the PICC lines are able to use a product from drycorp to keep their lines dry to swim and bathe. Google drycorp. I hope this helps his summer some. I haven't met an ID doc that even knows about these yet so spread the word. I live in Texas and have used these once with one patient and it worked great. It was about $40.00. I think you had to get a dr.'s order for it, but thats not a problem. It was a big help. Good luck!!!

 

[friendofall]

As a home health pediatric nurse, I have kiddos with MTB and take antibiotic treatments through either a PICC line or a port for 6-12 months at a time continuously. During the summer those with the PICC lines are able to use a product from drycorp to keep their lines dry to swim and bathe. Google drycorp. I hope this helps his summer some. I haven't met an ID doc that even knows about these yet so spread the word. I live in Texas and have used these once with one patient and it worked great. It was about $40.00. I think you had to get a dr.'s order for it, but thats not a problem. It was a big help. Good luck!!!

 

[friendofall]

As a home health pediatric nurse, I have kiddos with MTB and take antibiotic treatments through either a PICC line or a port for 6-12 months at a time continuously. During the summer those with the PICC lines are able to use a product from drycorp to keep their lines dry to swim and bathe. Google drycorp. I hope this helps his summer some. I haven't met an ID doc that even knows about these yet so spread the word. I live in Texas and have used these once with one patient and it worked great. It was about $40.00. I think you had to get a dr.'s order for it, but thats not a problem. It was a big help. Good luck!!!

 

[ldell]

My 15 year old son cultured mycobacterium abscessus last year. His doctors decided not to treat it then. Since then, he has had a decline in PFTs and has cultured it again. We are treating it now. He has a PICC and is recieving tigecycline through it once a day, inhaled amikacin and zithromax. The plan is to continue the tigecycline (IV) for two months, do a CT scan and if he's doing significantly better we will discontiue the tigecycline and continue the other meds for several months. If he's not doing better, he will probably get a port put in and continue the tigecycline for several more months. I guess treatment could possibly go for up to 12 months. I hope it won't take that long! He's been on these meds for three weeks now. Keep us posted about your son.

Lisa

 

[ldell]

My 15 year old son cultured mycobacterium abscessus last year. His doctors decided not to treat it then. Since then, he has had a decline in PFTs and has cultured it again. We are treating it now. He has a PICC and is recieving tigecycline through it once a day, inhaled amikacin and zithromax. The plan is to continue the tigecycline (IV) for two months, do a CT scan and if he's doing significantly better we will discontiue the tigecycline and continue the other meds for several months. If he's not doing better, he will probably get a port put in and continue the tigecycline for several more months. I guess treatment could possibly go for up to 12 months. I hope it won't take that long! He's been on these meds for three weeks now. Keep us posted about your son.

Lisa

 

[ldell]

My 15 year old son cultured mycobacterium abscessus last year. His doctors decided not to treat it then. Since then, he has had a decline in PFTs and has cultured it again. We are treating it now. He has a PICC and is recieving tigecycline through it once a day, inhaled amikacin and zithromax. The plan is to continue the tigecycline (IV) for two months, do a CT scan and if he's doing significantly better we will discontiue the tigecycline and continue the other meds for several months. If he's not doing better, he will probably get a port put in and continue the tigecycline for several more months. I guess treatment could possibly go for up to 12 months. I hope it won't take that long! He's been on these meds for three weeks now. Keep us posted about your son.

Lisa

 

[ldell]

My 15 year old son cultured mycobacterium abscessus last year. His doctors decided not to treat it then. Since then, he has had a decline in PFTs and has cultured it again. We are treating it now. He has a PICC and is recieving tigecycline through it once a day, inhaled amikacin and zithromax. The plan is to continue the tigecycline (IV) for two months, do a CT scan and if he's doing significantly better we will discontiue the tigecycline and continue the other meds for several months. If he's not doing better, he will probably get a port put in and continue the tigecycline for several more months. I guess treatment could possibly go for up to 12 months. I hope it won't take that long! He's been on these meds for three weeks now. Keep us posted about your son.

Lisa

 

[ldell]

My 15 year old son cultured mycobacterium abscessus last year. His doctors decided not to treat it then. Since then, he has had a decline in PFTs and has cultured it again. We are treating it now. He has a PICC and is recieving tigecycline through it once a day, inhaled amikacin and zithromax. The plan is to continue the tigecycline (IV) for two months, do a CT scan and if he's doing significantly better we will discontiue the tigecycline and continue the other meds for several months. If he's not doing better, he will probably get a port put in and continue the tigecycline for several more months. I guess treatment could possibly go for up to 12 months. I hope it won't take that long! He's been on these meds for three weeks now. Keep us posted about your son.
<br />
<br />Lisa

 

[beleache]

I also cultured positive for mycobacterium abscesses.. Like Lisa's son they decided not to treat me for it, but the reasons for me are, i had renal failure due to tobramycin (which i have hearing loss from), am allergic to bactrim, avalox and one other which escapes me at the moment ..
I also had to have my (actually 2) port removed due to 3 DVT's, so another port would have to be really needed for me to have it placed..
The doc's are keeping a close eye on me. I have been worried about them not treating me for it and have asked many questions to the point of driving them crazy.. I just hope and pray that they are making the right decision.. joni



Edited Dec. 15th. 2008


Still not being treated for the Myco but am now in touch w/ Denver National Jewish and if all goes well will be evaluated by them..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

I also cultured positive for mycobacterium abscesses.. Like Lisa's son they decided not to treat me for it, but the reasons for me are, i had renal failure due to tobramycin (which i have hearing loss from), am allergic to bactrim, avalox and one other which escapes me at the moment ..
I also had to have my (actually 2) port removed due to 3 DVT's, so another port would have to be really needed for me to have it placed..
The doc's are keeping a close eye on me. I have been worried about them not treating me for it and have asked many questions to the point of driving them crazy.. I just hope and pray that they are making the right decision.. joni



Edited Dec. 15th. 2008


Still not being treated for the Myco but am now in touch w/ Denver National Jewish and if all goes well will be evaluated by them..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

I also cultured positive for mycobacterium abscesses.. Like Lisa's son they decided not to treat me for it, but the reasons for me are, i had renal failure due to tobramycin (which i have hearing loss from), am allergic to bactrim, avalox and one other which escapes me at the moment ..
I also had to have my (actually 2) port removed due to 3 DVT's, so another port would have to be really needed for me to have it placed..
The doc's are keeping a close eye on me. I have been worried about them not treating me for it and have asked many questions to the point of driving them crazy.. I just hope and pray that they are making the right decision.. joni



Edited Dec. 15th. 2008


Still not being treated for the Myco but am now in touch w/ Denver National Jewish and if all goes well will be evaluated by them..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

I also cultured positive for mycobacterium abscesses.. Like Lisa's son they decided not to treat me for it, but the reasons for me are, i had renal failure due to tobramycin (which i have hearing loss from), am allergic to bactrim, avalox and one other which escapes me at the moment ..
I also had to have my (actually 2) port removed due to 3 DVT's, so another port would have to be really needed for me to have it placed..
The doc's are keeping a close eye on me. I have been worried about them not treating me for it and have asked many questions to the point of driving them crazy.. I just hope and pray that they are making the right decision.. joni



Edited Dec. 15th. 2008


Still not being treated for the Myco but am now in touch w/ Denver National Jewish and if all goes well will be evaluated by them..

<img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

I also cultured positive for mycobacterium abscesses.. Like Lisa's son they decided not to treat me for it, but the reasons for me are, i had renal failure due to tobramycin (which i have hearing loss from), am allergic to bactrim, avalox and one other which escapes me at the moment ..
<br /> I also had to have my (actually 2) port removed due to 3 DVT's, so another port would have to be really needed for me to have it placed..
<br /> The doc's are keeping a close eye on me. I have been worried about them not treating me for it and have asked many questions to the point of driving them crazy.. I just hope and pray that they are making the right decision.. joni
<br />
<br />
<br />
<br />Edited Dec. 15th. 2008
<br />
<br />
<br />Still not being treated for the Myco but am now in touch w/ Denver National Jewish and if all goes well will be evaluated by them..
<br />
<br /><img src="i/expressions/heart.gif" border="0"> joni
<br />
<br />

 

[donin]

I am in the hospital waiting room with my 20 year old son - he is being admitted and will likely get a portacath. He has mycobacterium chelonae. He developed it last spring and was hospitalized for 16 days - it is the first time he has been seriously ill with CF. He was really, really sick - lost 30lbs, lung function crashed, it was terrible.

The doctor has not been able to kill the MC with oral antibiotics - it is resistant. But, he is not sure about the portacath - he is worried about how it will look. However, the picc line is also a misery and he developed blood clots with the picc last time, so is reluctant to go that route. Would anyone have a link to a picture of a portacath that is actually implanted? He wold like to see what it will look like. He is worried that he will look like he has a big tumor.

Thanks so much!

 

[donin]

I am in the hospital waiting room with my 20 year old son - he is being admitted and will likely get a portacath. He has mycobacterium chelonae. He developed it last spring and was hospitalized for 16 days - it is the first time he has been seriously ill with CF. He was really, really sick - lost 30lbs, lung function crashed, it was terrible.

The doctor has not been able to kill the MC with oral antibiotics - it is resistant. But, he is not sure about the portacath - he is worried about how it will look. However, the picc line is also a misery and he developed blood clots with the picc last time, so is reluctant to go that route. Would anyone have a link to a picture of a portacath that is actually implanted? He wold like to see what it will look like. He is worried that he will look like he has a big tumor.

Thanks so much!

 

[donin]

I am in the hospital waiting room with my 20 year old son - he is being admitted and will likely get a portacath. He has mycobacterium chelonae. He developed it last spring and was hospitalized for 16 days - it is the first time he has been seriously ill with CF. He was really, really sick - lost 30lbs, lung function crashed, it was terrible.

The doctor has not been able to kill the MC with oral antibiotics - it is resistant. But, he is not sure about the portacath - he is worried about how it will look. However, the picc line is also a misery and he developed blood clots with the picc last time, so is reluctant to go that route. Would anyone have a link to a picture of a portacath that is actually implanted? He wold like to see what it will look like. He is worried that he will look like he has a big tumor.

Thanks so much!

 

[donin]

I am in the hospital waiting room with my 20 year old son - he is being admitted and will likely get a portacath. He has mycobacterium chelonae. He developed it last spring and was hospitalized for 16 days - it is the first time he has been seriously ill with CF. He was really, really sick - lost 30lbs, lung function crashed, it was terrible.

The doctor has not been able to kill the MC with oral antibiotics - it is resistant. But, he is not sure about the portacath - he is worried about how it will look. However, the picc line is also a misery and he developed blood clots with the picc last time, so is reluctant to go that route. Would anyone have a link to a picture of a portacath that is actually implanted? He wold like to see what it will look like. He is worried that he will look like he has a big tumor.

Thanks so much!

 

[donin]

I am in the hospital waiting room with my 20 year old son - he is being admitted and will likely get a portacath. He has mycobacterium chelonae. He developed it last spring and was hospitalized for 16 days - it is the first time he has been seriously ill with CF. He was really, really sick - lost 30lbs, lung function crashed, it was terrible.
<br />
<br />The doctor has not been able to kill the MC with oral antibiotics - it is resistant. But, he is not sure about the portacath - he is worried about how it will look. However, the picc line is also a misery and he developed blood clots with the picc last time, so is reluctant to go that route. Would anyone have a link to a picture of a portacath that is actually implanted? He wold like to see what it will look like. He is worried that he will look like he has a big tumor.
<br />
<br />Thanks so much!