NTB & Mold...

M

moosemom

New member
Hi Kelly,

I too have NTM - mine is usually absesus (sp?)... I sometimes have a mold too... to date they have not treated the mold. As far as the NTM, I was on a similar cocktail we tried the amakacin both iv and inhaled, ehtambutal, both rifam and rifibutian, lots of zithromax and an additional iv of immipenium... Unfortunatley after years of almost continual medication I still have the NTM...

Like the others have said it is difficult, are you working with an ID doc? You might ask to have your samples sent to National Jewish Hospital in Denver they are the tops at the NTM, Dr. Huitt treated me... good luck and pm me if you have any questions...

Big hugs to all of you...

Marci
 
M

moosemom

New member
Hi Kelly,

I too have NTM - mine is usually absesus (sp?)... I sometimes have a mold too... to date they have not treated the mold. As far as the NTM, I was on a similar cocktail we tried the amakacin both iv and inhaled, ehtambutal, both rifam and rifibutian, lots of zithromax and an additional iv of immipenium... Unfortunatley after years of almost continual medication I still have the NTM...

Like the others have said it is difficult, are you working with an ID doc? You might ask to have your samples sent to National Jewish Hospital in Denver they are the tops at the NTM, Dr. Huitt treated me... good luck and pm me if you have any questions...

Big hugs to all of you...

Marci
 
M

moosemom

New member
Hi Kelly,

I too have NTM - mine is usually absesus (sp?)... I sometimes have a mold too... to date they have not treated the mold. As far as the NTM, I was on a similar cocktail we tried the amakacin both iv and inhaled, ehtambutal, both rifam and rifibutian, lots of zithromax and an additional iv of immipenium... Unfortunatley after years of almost continual medication I still have the NTM...

Like the others have said it is difficult, are you working with an ID doc? You might ask to have your samples sent to National Jewish Hospital in Denver they are the tops at the NTM, Dr. Huitt treated me... good luck and pm me if you have any questions...

Big hugs to all of you...

Marci
 
M

moosemom

New member
Hi Kelly,

I too have NTM - mine is usually absesus (sp?)... I sometimes have a mold too... to date they have not treated the mold. As far as the NTM, I was on a similar cocktail we tried the amakacin both iv and inhaled, ehtambutal, both rifam and rifibutian, lots of zithromax and an additional iv of immipenium... Unfortunatley after years of almost continual medication I still have the NTM...

Like the others have said it is difficult, are you working with an ID doc? You might ask to have your samples sent to National Jewish Hospital in Denver they are the tops at the NTM, Dr. Huitt treated me... good luck and pm me if you have any questions...

Big hugs to all of you...

Marci
 
M

moosemom

New member
Hi Kelly,
<br />
<br />I too have NTM - mine is usually absesus (sp?)... I sometimes have a mold too... to date they have not treated the mold. As far as the NTM, I was on a similar cocktail we tried the amakacin both iv and inhaled, ehtambutal, both rifam and rifibutian, lots of zithromax and an additional iv of immipenium... Unfortunatley after years of almost continual medication I still have the NTM...
<br />
<br />Like the others have said it is difficult, are you working with an ID doc? You might ask to have your samples sent to National Jewish Hospital in Denver they are the tops at the NTM, Dr. Huitt treated me... good luck and pm me if you have any questions...
<br />
<br />Big hugs to all of you...
<br />
<br />Marci
 
R

Rokiss12

New member
im like Jane's son... went on sporonox for a year+ when i had a mold problem. it really seemed to help and i havent had a problem with it this summer, which is usually my worst time.

hope he feels better soon- im sure he will!
best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Rokiss12

New member
im like Jane's son... went on sporonox for a year+ when i had a mold problem. it really seemed to help and i havent had a problem with it this summer, which is usually my worst time.

hope he feels better soon- im sure he will!
best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Rokiss12

New member
im like Jane's son... went on sporonox for a year+ when i had a mold problem. it really seemed to help and i havent had a problem with it this summer, which is usually my worst time.

hope he feels better soon- im sure he will!
best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Rokiss12

New member
im like Jane's son... went on sporonox for a year+ when i had a mold problem. it really seemed to help and i havent had a problem with it this summer, which is usually my worst time.

hope he feels better soon- im sure he will!
best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Rokiss12

New member
im like Jane's son... went on sporonox for a year+ when i had a mold problem. it really seemed to help and i havent had a problem with it this summer, which is usually my worst time.
<br />
<br />hope he feels better soon- im sure he will!
<br />best of luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

kbsonner

New member
A Infectious D. doc just got involved last night and she gave her opinion on what drugs to use. I guess she treats adults with this and is the head of the transplant unit here(fairview in mn). They sent his NTM stuff to a lab in Utah to get typed already. Now I guess we are just waiting to see if the meds work. If they dont show any improvment I dont know what they will do then. He has a bronc again on Monday to see if they missed anything. Those results should be in by Wednesday. I hope something works soon, I don't know how much longer we can take being here. To those who have had this, how long were you in the joint? lol
 
K

kbsonner

New member
A Infectious D. doc just got involved last night and she gave her opinion on what drugs to use. I guess she treats adults with this and is the head of the transplant unit here(fairview in mn). They sent his NTM stuff to a lab in Utah to get typed already. Now I guess we are just waiting to see if the meds work. If they dont show any improvment I dont know what they will do then. He has a bronc again on Monday to see if they missed anything. Those results should be in by Wednesday. I hope something works soon, I don't know how much longer we can take being here. To those who have had this, how long were you in the joint? lol
 
K

kbsonner

New member
A Infectious D. doc just got involved last night and she gave her opinion on what drugs to use. I guess she treats adults with this and is the head of the transplant unit here(fairview in mn). They sent his NTM stuff to a lab in Utah to get typed already. Now I guess we are just waiting to see if the meds work. If they dont show any improvment I dont know what they will do then. He has a bronc again on Monday to see if they missed anything. Those results should be in by Wednesday. I hope something works soon, I don't know how much longer we can take being here. To those who have had this, how long were you in the joint? lol
 
K

kbsonner

New member
A Infectious D. doc just got involved last night and she gave her opinion on what drugs to use. I guess she treats adults with this and is the head of the transplant unit here(fairview in mn). They sent his NTM stuff to a lab in Utah to get typed already. Now I guess we are just waiting to see if the meds work. If they dont show any improvment I dont know what they will do then. He has a bronc again on Monday to see if they missed anything. Those results should be in by Wednesday. I hope something works soon, I don't know how much longer we can take being here. To those who have had this, how long were you in the joint? lol
 
K

kbsonner

New member
A Infectious D. doc just got involved last night and she gave her opinion on what drugs to use. I guess she treats adults with this and is the head of the transplant unit here(fairview in mn). They sent his NTM stuff to a lab in Utah to get typed already. Now I guess we are just waiting to see if the meds work. If they dont show any improvment I dont know what they will do then. He has a bronc again on Monday to see if they missed anything. Those results should be in by Wednesday. I hope something works soon, I don't know how much longer we can take being here. To those who have had this, how long were you in the joint? lol
 
M

moosemom

New member
Hi again...

The longest I have been in-patient was two weeks at a time(but I am an adult with a family to care for), once they decided what to do - thought it was working - not making me sicker... they set up home health and I was on my own... treatment lasted for toooo many months over tooo many years... does your son have a port? While I didn't want one it was then BEST thing I did considering the long term iv abx due to the NTM...

Hope this helps... Good luck...

Hugs
Marci
 
M

moosemom

New member
Hi again...

The longest I have been in-patient was two weeks at a time(but I am an adult with a family to care for), once they decided what to do - thought it was working - not making me sicker... they set up home health and I was on my own... treatment lasted for toooo many months over tooo many years... does your son have a port? While I didn't want one it was then BEST thing I did considering the long term iv abx due to the NTM...

Hope this helps... Good luck...

Hugs
Marci
 
M

moosemom

New member
Hi again...

The longest I have been in-patient was two weeks at a time(but I am an adult with a family to care for), once they decided what to do - thought it was working - not making me sicker... they set up home health and I was on my own... treatment lasted for toooo many months over tooo many years... does your son have a port? While I didn't want one it was then BEST thing I did considering the long term iv abx due to the NTM...

Hope this helps... Good luck...

Hugs
Marci
 
M

moosemom

New member
Hi again...

The longest I have been in-patient was two weeks at a time(but I am an adult with a family to care for), once they decided what to do - thought it was working - not making me sicker... they set up home health and I was on my own... treatment lasted for toooo many months over tooo many years... does your son have a port? While I didn't want one it was then BEST thing I did considering the long term iv abx due to the NTM...

Hope this helps... Good luck...

Hugs
Marci
 
M

moosemom

New member
Hi again...
<br />
<br />The longest I have been in-patient was two weeks at a time(but I am an adult with a family to care for), once they decided what to do - thought it was working - not making me sicker... they set up home health and I was on my own... treatment lasted for toooo many months over tooo many years... does your son have a port? While I didn't want one it was then BEST thing I did considering the long term iv abx due to the NTM...
<br />
<br />Hope this helps... Good luck...
<br />
<br />Hugs
<br />Marci
 
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