Please respond if you have MAC or MAC-like stuff

[ladybug]

Thank you all so much for answering my many questions about this. Its just all so much to take in and has really thrown me mentally and emotinally through the ringer.

I appreciate you sharing your experiences. I am very fearful of the side effects since I seem to get all the side effects of every med I'm on (LOL), but I'm also afraid to let MAC go untreated or wait too long to start treating.

So, those of you on IV abx for it, are you on IV the ENTIRE 12+ months? Do you do them through a PICC or PORT? I don't have a PORT but would likely get one if I have to treat this beast.

Also, I don't think they did any sensitivity culture to see what my MAC would respond to. Since they didn't, what happens now? Do I have to cough another sample and wait 6-7 weeks for it to grow MAC AGAIN so they can find the best drug combo? Do I have this kind of time?

Does anyone know if they'll transplant you if you have untreated MAC? Or, if you've tried to treat it and it keeps coming back... will anyone transplant you? (I'm not on the tx list, but also don't want to jeoperdize my chances if I choose to be in the future.)

Also, for those who consult with Children's National Jewish, did you physically go there and what did that entail? Or, did your center just consult with them? I'm just curious what traveling there would gain me if my docs could just consult with them on my behalf? The only thing I could probably do is get their opinion on WHETHER we should treat it, but the treatment will essentially be the same, right??

Thanks for listening to me and all the great info. I'm just really really scared right now, but want to start feeling better. I don't know if 10% drop in lung function is enough to warrant a treatment from which I could loose hearing, kidney fx, or retinal damage (some of the side effects from MAC meds) and I'm sooo nervous to make the "right" decision.

Blessings to you all...

 

[ladybug]

Thank you all so much for answering my many questions about this. Its just all so much to take in and has really thrown me mentally and emotinally through the ringer.

I appreciate you sharing your experiences. I am very fearful of the side effects since I seem to get all the side effects of every med I'm on (LOL), but I'm also afraid to let MAC go untreated or wait too long to start treating.

So, those of you on IV abx for it, are you on IV the ENTIRE 12+ months? Do you do them through a PICC or PORT? I don't have a PORT but would likely get one if I have to treat this beast.

Also, I don't think they did any sensitivity culture to see what my MAC would respond to. Since they didn't, what happens now? Do I have to cough another sample and wait 6-7 weeks for it to grow MAC AGAIN so they can find the best drug combo? Do I have this kind of time?

Does anyone know if they'll transplant you if you have untreated MAC? Or, if you've tried to treat it and it keeps coming back... will anyone transplant you? (I'm not on the tx list, but also don't want to jeoperdize my chances if I choose to be in the future.)

Also, for those who consult with Children's National Jewish, did you physically go there and what did that entail? Or, did your center just consult with them? I'm just curious what traveling there would gain me if my docs could just consult with them on my behalf? The only thing I could probably do is get their opinion on WHETHER we should treat it, but the treatment will essentially be the same, right??

Thanks for listening to me and all the great info. I'm just really really scared right now, but want to start feeling better. I don't know if 10% drop in lung function is enough to warrant a treatment from which I could loose hearing, kidney fx, or retinal damage (some of the side effects from MAC meds) and I'm sooo nervous to make the "right" decision.

Blessings to you all...

 

[ladybug]

Thank you all so much for answering my many questions about this. Its just all so much to take in and has really thrown me mentally and emotinally through the ringer.

I appreciate you sharing your experiences. I am very fearful of the side effects since I seem to get all the side effects of every med I'm on (LOL), but I'm also afraid to let MAC go untreated or wait too long to start treating.

So, those of you on IV abx for it, are you on IV the ENTIRE 12+ months? Do you do them through a PICC or PORT? I don't have a PORT but would likely get one if I have to treat this beast.

Also, I don't think they did any sensitivity culture to see what my MAC would respond to. Since they didn't, what happens now? Do I have to cough another sample and wait 6-7 weeks for it to grow MAC AGAIN so they can find the best drug combo? Do I have this kind of time?

Does anyone know if they'll transplant you if you have untreated MAC? Or, if you've tried to treat it and it keeps coming back... will anyone transplant you? (I'm not on the tx list, but also don't want to jeoperdize my chances if I choose to be in the future.)

Also, for those who consult with Children's National Jewish, did you physically go there and what did that entail? Or, did your center just consult with them? I'm just curious what traveling there would gain me if my docs could just consult with them on my behalf? The only thing I could probably do is get their opinion on WHETHER we should treat it, but the treatment will essentially be the same, right??

Thanks for listening to me and all the great info. I'm just really really scared right now, but want to start feeling better. I don't know if 10% drop in lung function is enough to warrant a treatment from which I could loose hearing, kidney fx, or retinal damage (some of the side effects from MAC meds) and I'm sooo nervous to make the "right" decision.

Blessings to you all...

 

[ladybug]

Thank you all so much for answering my many questions about this. Its just all so much to take in and has really thrown me mentally and emotinally through the ringer.

I appreciate you sharing your experiences. I am very fearful of the side effects since I seem to get all the side effects of every med I'm on (LOL), but I'm also afraid to let MAC go untreated or wait too long to start treating.

So, those of you on IV abx for it, are you on IV the ENTIRE 12+ months? Do you do them through a PICC or PORT? I don't have a PORT but would likely get one if I have to treat this beast.

Also, I don't think they did any sensitivity culture to see what my MAC would respond to. Since they didn't, what happens now? Do I have to cough another sample and wait 6-7 weeks for it to grow MAC AGAIN so they can find the best drug combo? Do I have this kind of time?

Does anyone know if they'll transplant you if you have untreated MAC? Or, if you've tried to treat it and it keeps coming back... will anyone transplant you? (I'm not on the tx list, but also don't want to jeoperdize my chances if I choose to be in the future.)

Also, for those who consult with Children's National Jewish, did you physically go there and what did that entail? Or, did your center just consult with them? I'm just curious what traveling there would gain me if my docs could just consult with them on my behalf? The only thing I could probably do is get their opinion on WHETHER we should treat it, but the treatment will essentially be the same, right??

Thanks for listening to me and all the great info. I'm just really really scared right now, but want to start feeling better. I don't know if 10% drop in lung function is enough to warrant a treatment from which I could loose hearing, kidney fx, or retinal damage (some of the side effects from MAC meds) and I'm sooo nervous to make the "right" decision.

Blessings to you all...

 

[ladybug]

Thank you all so much for answering my many questions about this. Its just all so much to take in and has really thrown me mentally and emotinally through the ringer.
<br />
<br />I appreciate you sharing your experiences. I am very fearful of the side effects since I seem to get all the side effects of every med I'm on (LOL), but I'm also afraid to let MAC go untreated or wait too long to start treating.
<br />
<br />So, those of you on IV abx for it, are you on IV the ENTIRE 12+ months? Do you do them through a PICC or PORT? I don't have a PORT but would likely get one if I have to treat this beast.
<br />
<br />Also, I don't think they did any sensitivity culture to see what my MAC would respond to. Since they didn't, what happens now? Do I have to cough another sample and wait 6-7 weeks for it to grow MAC AGAIN so they can find the best drug combo? Do I have this kind of time?
<br />
<br />Does anyone know if they'll transplant you if you have untreated MAC? Or, if you've tried to treat it and it keeps coming back... will anyone transplant you? (I'm not on the tx list, but also don't want to jeoperdize my chances if I choose to be in the future.)
<br />
<br />Also, for those who consult with Children's National Jewish, did you physically go there and what did that entail? Or, did your center just consult with them? I'm just curious what traveling there would gain me if my docs could just consult with them on my behalf? The only thing I could probably do is get their opinion on WHETHER we should treat it, but the treatment will essentially be the same, right??
<br />
<br />Thanks for listening to me and all the great info. I'm just really really scared right now, but want to start feeling better. I don't know if 10% drop in lung function is enough to warrant a treatment from which I could loose hearing, kidney fx, or retinal damage (some of the side effects from MAC meds) and I'm sooo nervous to make the "right" decision.
<br />
<br />Blessings to you all...

 

[beleache]

Hi Sonia,

I have been on IV abx + oral & inhaled from the beginning of treatment , 7 mos ago , till now (cept for a week break for my honeymoon <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

I have a port & love it .. I have to do shots of lovenox (blood thinner) since i clot <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

If you dr didnt start testing for the best ****tail for your treatment , i would question when they will .. The sooner the better.. Your center will send this out , i think it goes to Texas, but not positive, if you want to know i will check that out for you..

I haven't heard that they wont transplant w/ myco.. as far as i know they will..

I did physically go to Denver National Jewish for there expertise.. I will be going back in a few weeks... Honestly i dont know if it made any difference in treatment or not.. My dr is consulting w/ them on a regular basis.. I went because they are #1 in the country for it, besides N. Carolina's center.. And wanted to have them on board... like i said , i dont know if it helped or not though..

Keep asking questions, talk to ppl , thats what i did when i first found out and was freaked out ..

Take care , keep us posted & God Bless ...

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

 

[beleache]

Hi Sonia,

I have been on IV abx + oral & inhaled from the beginning of treatment , 7 mos ago , till now (cept for a week break for my honeymoon <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

I have a port & love it .. I have to do shots of lovenox (blood thinner) since i clot <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

If you dr didnt start testing for the best ****tail for your treatment , i would question when they will .. The sooner the better.. Your center will send this out , i think it goes to Texas, but not positive, if you want to know i will check that out for you..

I haven't heard that they wont transplant w/ myco.. as far as i know they will..

I did physically go to Denver National Jewish for there expertise.. I will be going back in a few weeks... Honestly i dont know if it made any difference in treatment or not.. My dr is consulting w/ them on a regular basis.. I went because they are #1 in the country for it, besides N. Carolina's center.. And wanted to have them on board... like i said , i dont know if it helped or not though..

Keep asking questions, talk to ppl , thats what i did when i first found out and was freaked out ..

Take care , keep us posted & God Bless ...

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

 

[beleache]

Hi Sonia,

I have been on IV abx + oral & inhaled from the beginning of treatment , 7 mos ago , till now (cept for a week break for my honeymoon <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

I have a port & love it .. I have to do shots of lovenox (blood thinner) since i clot <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

If you dr didnt start testing for the best ****tail for your treatment , i would question when they will .. The sooner the better.. Your center will send this out , i think it goes to Texas, but not positive, if you want to know i will check that out for you..

I haven't heard that they wont transplant w/ myco.. as far as i know they will..

I did physically go to Denver National Jewish for there expertise.. I will be going back in a few weeks... Honestly i dont know if it made any difference in treatment or not.. My dr is consulting w/ them on a regular basis.. I went because they are #1 in the country for it, besides N. Carolina's center.. And wanted to have them on board... like i said , i dont know if it helped or not though..

Keep asking questions, talk to ppl , thats what i did when i first found out and was freaked out ..

Take care , keep us posted & God Bless ...

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

 

[beleache]

Hi Sonia,

I have been on IV abx + oral & inhaled from the beginning of treatment , 7 mos ago , till now (cept for a week break for my honeymoon <img src="i/expressions/face-icon-small-smile.gif" border="0"> )

I have a port & love it .. I have to do shots of lovenox (blood thinner) since i clot <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

If you dr didnt start testing for the best ****tail for your treatment , i would question when they will .. The sooner the better.. Your center will send this out , i think it goes to Texas, but not positive, if you want to know i will check that out for you..

I haven't heard that they wont transplant w/ myco.. as far as i know they will..

I did physically go to Denver National Jewish for there expertise.. I will be going back in a few weeks... Honestly i dont know if it made any difference in treatment or not.. My dr is consulting w/ them on a regular basis.. I went because they are #1 in the country for it, besides N. Carolina's center.. And wanted to have them on board... like i said , i dont know if it helped or not though..

Keep asking questions, talk to ppl , thats what i did when i first found out and was freaked out ..

Take care , keep us posted & God Bless ...

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

 

[beleache]

Hi Sonia,
<br />
<br /> I have been on IV abx + oral & inhaled from the beginning of treatment , 7 mos ago , till now (cept for a week break for my honeymoon <img src="i/expressions/face-icon-small-smile.gif" border="0"> )
<br />
<br />I have a port & love it .. I have to do shots of lovenox (blood thinner) since i clot <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
<br />
<br />If you dr didnt start testing for the best ****tail for your treatment , i would question when they will .. The sooner the better.. Your center will send this out , i think it goes to Texas, but not positive, if you want to know i will check that out for you..
<br />
<br />I haven't heard that they wont transplant w/ myco.. as far as i know they will..
<br />
<br />I did physically go to Denver National Jewish for there expertise.. I will be going back in a few weeks... Honestly i dont know if it made any difference in treatment or not.. My dr is consulting w/ them on a regular basis.. I went because they are #1 in the country for it, besides N. Carolina's center.. And wanted to have them on board... like i said , i dont know if it helped or not though..
<br />
<br />Keep asking questions, talk to ppl , thats what i did when i first found out and was freaked out ..
<br />
<br /> Take care , keep us posted & God Bless ...
<br />
<br /> <img src="i/expressions/heart.gif" border="0"> joni
<br />
<br />
<br />
<br />
<br />

 

[theLostMiler]

I also have m. absessus.

I started with the chlonea (spelling) strain first I believe back in december of 2006. I believe due to my slacking in freshman year of college and the dorms I lived in, I probably got it during end of 2005, beginning of 2006 but wasnt being tested until that december.

I was told it was a minimum of 18 months treatment. I was on orals and inhaled for 6 months, I think it was bactrim, cipro and tobi then I started "stronger" versions of zyvox, biaxin (maybe) and amikacin for 6 months... zyvox gave me horrible nueropathy after the 6 months of use.... (during this time I was in school and doing relatively okay)

anyways... I was on ivs for like 3 months (tobra and timintin) and was doing horrible... 4 treatments a day, losing weight like crazy... (during this time was horrible, mom had to stay with me in order to help with my schedule of everything)

then NEW cf doctor and I.D. doc said i had m. absessus, did new sensativies did 2 months of cefoxitin and amikacin in summer of 08... OFF ALL ABX for 9 months!!! (off of abx i was in school and doing great)

I obviously still have m. absessus... but I culutred b. cep and I think my docs think that that has been more troublesome than the m. absessus.

As for tx... m. abessus complicates things after tx (as far as the actual wounds my tx doc said) so it can be difficult to find a center... I am in the process of just finding a center. So they do do tx on people w/ m. absessus but it probably has to be a big center....

 

[theLostMiler]

I also have m. absessus.

I started with the chlonea (spelling) strain first I believe back in december of 2006. I believe due to my slacking in freshman year of college and the dorms I lived in, I probably got it during end of 2005, beginning of 2006 but wasnt being tested until that december.

I was told it was a minimum of 18 months treatment. I was on orals and inhaled for 6 months, I think it was bactrim, cipro and tobi then I started "stronger" versions of zyvox, biaxin (maybe) and amikacin for 6 months... zyvox gave me horrible nueropathy after the 6 months of use.... (during this time I was in school and doing relatively okay)

anyways... I was on ivs for like 3 months (tobra and timintin) and was doing horrible... 4 treatments a day, losing weight like crazy... (during this time was horrible, mom had to stay with me in order to help with my schedule of everything)

then NEW cf doctor and I.D. doc said i had m. absessus, did new sensativies did 2 months of cefoxitin and amikacin in summer of 08... OFF ALL ABX for 9 months!!! (off of abx i was in school and doing great)

I obviously still have m. absessus... but I culutred b. cep and I think my docs think that that has been more troublesome than the m. absessus.

As for tx... m. abessus complicates things after tx (as far as the actual wounds my tx doc said) so it can be difficult to find a center... I am in the process of just finding a center. So they do do tx on people w/ m. absessus but it probably has to be a big center....

 

[theLostMiler]

I also have m. absessus.

I started with the chlonea (spelling) strain first I believe back in december of 2006. I believe due to my slacking in freshman year of college and the dorms I lived in, I probably got it during end of 2005, beginning of 2006 but wasnt being tested until that december.

I was told it was a minimum of 18 months treatment. I was on orals and inhaled for 6 months, I think it was bactrim, cipro and tobi then I started "stronger" versions of zyvox, biaxin (maybe) and amikacin for 6 months... zyvox gave me horrible nueropathy after the 6 months of use.... (during this time I was in school and doing relatively okay)

anyways... I was on ivs for like 3 months (tobra and timintin) and was doing horrible... 4 treatments a day, losing weight like crazy... (during this time was horrible, mom had to stay with me in order to help with my schedule of everything)

then NEW cf doctor and I.D. doc said i had m. absessus, did new sensativies did 2 months of cefoxitin and amikacin in summer of 08... OFF ALL ABX for 9 months!!! (off of abx i was in school and doing great)

I obviously still have m. absessus... but I culutred b. cep and I think my docs think that that has been more troublesome than the m. absessus.

As for tx... m. abessus complicates things after tx (as far as the actual wounds my tx doc said) so it can be difficult to find a center... I am in the process of just finding a center. So they do do tx on people w/ m. absessus but it probably has to be a big center....

 

[theLostMiler]

I also have m. absessus.

I started with the chlonea (spelling) strain first I believe back in december of 2006. I believe due to my slacking in freshman year of college and the dorms I lived in, I probably got it during end of 2005, beginning of 2006 but wasnt being tested until that december.

I was told it was a minimum of 18 months treatment. I was on orals and inhaled for 6 months, I think it was bactrim, cipro and tobi then I started "stronger" versions of zyvox, biaxin (maybe) and amikacin for 6 months... zyvox gave me horrible nueropathy after the 6 months of use.... (during this time I was in school and doing relatively okay)

anyways... I was on ivs for like 3 months (tobra and timintin) and was doing horrible... 4 treatments a day, losing weight like crazy... (during this time was horrible, mom had to stay with me in order to help with my schedule of everything)

then NEW cf doctor and I.D. doc said i had m. absessus, did new sensativies did 2 months of cefoxitin and amikacin in summer of 08... OFF ALL ABX for 9 months!!! (off of abx i was in school and doing great)

I obviously still have m. absessus... but I culutred b. cep and I think my docs think that that has been more troublesome than the m. absessus.

As for tx... m. abessus complicates things after tx (as far as the actual wounds my tx doc said) so it can be difficult to find a center... I am in the process of just finding a center. So they do do tx on people w/ m. absessus but it probably has to be a big center....

 

[theLostMiler]

I also have m. absessus.
<br />
<br />I started with the chlonea (spelling) strain first I believe back in december of 2006. I believe due to my slacking in freshman year of college and the dorms I lived in, I probably got it during end of 2005, beginning of 2006 but wasnt being tested until that december.
<br />
<br />I was told it was a minimum of 18 months treatment. I was on orals and inhaled for 6 months, I think it was bactrim, cipro and tobi then I started "stronger" versions of zyvox, biaxin (maybe) and amikacin for 6 months... zyvox gave me horrible nueropathy after the 6 months of use.... (during this time I was in school and doing relatively okay)
<br />
<br />anyways... I was on ivs for like 3 months (tobra and timintin) and was doing horrible... 4 treatments a day, losing weight like crazy... (during this time was horrible, mom had to stay with me in order to help with my schedule of everything)
<br />
<br />then NEW cf doctor and I.D. doc said i had m. absessus, did new sensativies did 2 months of cefoxitin and amikacin in summer of 08... OFF ALL ABX for 9 months!!! (off of abx i was in school and doing great)
<br />
<br />I obviously still have m. absessus... but I culutred b. cep and I think my docs think that that has been more troublesome than the m. absessus.
<br />
<br />As for tx... m. abessus complicates things after tx (as far as the actual wounds my tx doc said) so it can be difficult to find a center... I am in the process of just finding a center. So they do do tx on people w/ m. absessus but it probably has to be a big center....