I still take Zythromax. I mentioned the study to my doctor (and I wish I was listening with better ears that day) because he said that it only affected a VERY limited number of people - maybe even that it almost wasn't statistically significant....I'll have to ask him again what he said. I'll get back to you =)
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Mycobacterium help
- Thread starter CysticlyFIT
- Start date
T
Tracy390
Guest
My 20 yr. old daughter grew mycobacterium years ago prior to her double-lung transplant. The docs put her on IV Amikacin & she remained on it until her transplant (several years). Because amikacin is ototoxic she lost her hearing completely (she now has cochlear implants). Her lung function declined rapidly & eventually dropped to 22%. They don't know how she got it but it never went away before the transplant. I was not sure about posting this because I didn't want to scare you but I think you need to know what your dealing with if the culture comes back positive. It was many years ago when my daughter first cultured the MAC so I'm sure they have better treatments today. I would recommend looking carefully into any side effects of any drug they give you to treat the MAC. Everyone responds differently to organisms & medications so you really don't know how your body will respond. Good luck with everything. I hope things work out well for you!
T
Tracy390
Guest
My 20 yr. old daughter grew mycobacterium years ago prior to her double-lung transplant. The docs put her on IV Amikacin & she remained on it until her transplant (several years). Because amikacin is ototoxic she lost her hearing completely (she now has cochlear implants). Her lung function declined rapidly & eventually dropped to 22%. They don't know how she got it but it never went away before the transplant. I was not sure about posting this because I didn't want to scare you but I think you need to know what your dealing with if the culture comes back positive. It was many years ago when my daughter first cultured the MAC so I'm sure they have better treatments today. I would recommend looking carefully into any side effects of any drug they give you to treat the MAC. Everyone responds differently to organisms & medications so you really don't know how your body will respond. Good luck with everything. I hope things work out well for you!
T
Tracy390
Guest
My 20 yr. old daughter grew mycobacterium years ago prior to her double-lung transplant. The docs put her on IV Amikacin & she remained on it until her transplant (several years). Because amikacin is ototoxic she lost her hearing completely (she now has cochlear implants). Her lung function declined rapidly & eventually dropped to 22%. They don't know how she got it but it never went away before the transplant. I was not sure about posting this because I didn't want to scare you but I think you need to know what your dealing with if the culture comes back positive. It was many years ago when my daughter first cultured the MAC so I'm sure they have better treatments today. I would recommend looking carefully into any side effects of any drug they give you to treat the MAC. Everyone responds differently to organisms & medications so you really don't know how your body will respond. Good luck with everything. I hope things work out well for you!
I have been on Zythromax for many years both prior to and after my abscesses diagnosis. I used to take it MWF as is common for CF patients, but I have taken 500 mg daily ever since I started treatment for the abscesses.
In terms of Tracy's post above -- I was on IV Amikacin for treatment starting in March of this year. I was going in for monthly hearing tests because of this side effect. Some minor damage showed up in my upper registers in July, so they took me off the drug immediately. I agree you should confirm side effects of the drugs you're on and make sure to monitor them.
I have noticed the odd smell of my sputum, but only when I've been really sick. I'm not in top health right now, but I don't have it.
I know it's a long wait for your results, but hopefully they'll come back negative.
In terms of Tracy's post above -- I was on IV Amikacin for treatment starting in March of this year. I was going in for monthly hearing tests because of this side effect. Some minor damage showed up in my upper registers in July, so they took me off the drug immediately. I agree you should confirm side effects of the drugs you're on and make sure to monitor them.
I have noticed the odd smell of my sputum, but only when I've been really sick. I'm not in top health right now, but I don't have it.
I know it's a long wait for your results, but hopefully they'll come back negative.
I have been on Zythromax for many years both prior to and after my abscesses diagnosis. I used to take it MWF as is common for CF patients, but I have taken 500 mg daily ever since I started treatment for the abscesses.
In terms of Tracy's post above -- I was on IV Amikacin for treatment starting in March of this year. I was going in for monthly hearing tests because of this side effect. Some minor damage showed up in my upper registers in July, so they took me off the drug immediately. I agree you should confirm side effects of the drugs you're on and make sure to monitor them.
I have noticed the odd smell of my sputum, but only when I've been really sick. I'm not in top health right now, but I don't have it.
I know it's a long wait for your results, but hopefully they'll come back negative.
In terms of Tracy's post above -- I was on IV Amikacin for treatment starting in March of this year. I was going in for monthly hearing tests because of this side effect. Some minor damage showed up in my upper registers in July, so they took me off the drug immediately. I agree you should confirm side effects of the drugs you're on and make sure to monitor them.
I have noticed the odd smell of my sputum, but only when I've been really sick. I'm not in top health right now, but I don't have it.
I know it's a long wait for your results, but hopefully they'll come back negative.
I have been on Zythromax for many years both prior to and after my abscesses diagnosis. I used to take it MWF as is common for CF patients, but I have taken 500 mg daily ever since I started treatment for the abscesses.
<br />
<br />In terms of Tracy's post above -- I was on IV Amikacin for treatment starting in March of this year. I was going in for monthly hearing tests because of this side effect. Some minor damage showed up in my upper registers in July, so they took me off the drug immediately. I agree you should confirm side effects of the drugs you're on and make sure to monitor them.
<br />
<br />I have noticed the odd smell of my sputum, but only when I've been really sick. I'm not in top health right now, but I don't have it.
<br />
<br />I know it's a long wait for your results, but hopefully they'll come back negative.
<br />
<br />
<br />In terms of Tracy's post above -- I was on IV Amikacin for treatment starting in March of this year. I was going in for monthly hearing tests because of this side effect. Some minor damage showed up in my upper registers in July, so they took me off the drug immediately. I agree you should confirm side effects of the drugs you're on and make sure to monitor them.
<br />
<br />I have noticed the odd smell of my sputum, but only when I've been really sick. I'm not in top health right now, but I don't have it.
<br />
<br />I know it's a long wait for your results, but hopefully they'll come back negative.
<br />
franzie2984
Member
Hi,<br><br>I am currently doing treatment for mycobacterium avium complex (MAC) (this is a non tuberculosis mycobacterium NTM). Most of the mycobacteriums cultured by CFers are NTM mycobacteriums. MAC has symptoms VERY similar to tuberculosis however, but is not contagious from person to person. <br><br>If you cultured it one time, that is typically not considered a good indicator of need for treatment. With these kinds of bacterias because they are slow growing and tend to "hide" in the lungs, typically more than one positive sputum (over time, not same day), and a CT scan for lung changes is used to decide if you are merely culturing it or sick from it.<br><br>I have never done Zithromax 3x weekly, to answer your question. I cultured MAC without doing Azithromyacin, so there you go. I do have CFRD though as you do. My lung function is currently mid to upper 80s, down from over 100% prior to my MAC problems. My symptoms are steady weight loss, steady lung function decline, and generally feeling like crap all the time, coupled with increased and frequent cough (over the last 1.5 years).<br><br>I do not yet know if it will "go away" because I am only in my fourth month of treatment. I would not worry, yet, if I was you, unless you actually feel sick(er) or have lung function decline. <br><br>Hope this helps!<br>
franzie2984
Member
Hi,<br><br>I am currently doing treatment for mycobacterium avium complex (MAC) (this is a non tuberculosis mycobacterium NTM). Most of the mycobacteriums cultured by CFers are NTM mycobacteriums. MAC has symptoms VERY similar to tuberculosis however, but is not contagious from person to person. <br><br>If you cultured it one time, that is typically not considered a good indicator of need for treatment. With these kinds of bacterias because they are slow growing and tend to "hide" in the lungs, typically more than one positive sputum (over time, not same day), and a CT scan for lung changes is used to decide if you are merely culturing it or sick from it.<br><br>I have never done Zithromax 3x weekly, to answer your question. I cultured MAC without doing Azithromyacin, so there you go. I do have CFRD though as you do. My lung function is currently mid to upper 80s, down from over 100% prior to my MAC problems. My symptoms are steady weight loss, steady lung function decline, and generally feeling like crap all the time, coupled with increased and frequent cough (over the last 1.5 years).<br><br>I do not yet know if it will "go away" because I am only in my fourth month of treatment. I would not worry, yet, if I was you, unless you actually feel sick(er) or have lung function decline. <br><br>Hope this helps!<br>
franzie2984
Member
Hi,<br><br>I am currently doing treatment for mycobacterium avium complex (MAC) (this is a non tuberculosis mycobacterium NTM). Most of the mycobacteriums cultured by CFers are NTM mycobacteriums. MAC has symptoms VERY similar to tuberculosis however, but is not contagious from person to person. <br><br>If you cultured it one time, that is typically not considered a good indicator of need for treatment. With these kinds of bacterias because they are slow growing and tend to "hide" in the lungs, typically more than one positive sputum (over time, not same day), and a CT scan for lung changes is used to decide if you are merely culturing it or sick from it.<br><br>I have never done Zithromax 3x weekly, to answer your question. I cultured MAC without doing Azithromyacin, so there you go. I do have CFRD though as you do. My lung function is currently mid to upper 80s, down from over 100% prior to my MAC problems. My symptoms are steady weight loss, steady lung function decline, and generally feeling like crap all the time, coupled with increased and frequent cough (over the last 1.5 years).<br><br>I do not yet know if it will "go away" because I am only in my fourth month of treatment. I would not worry, yet, if I was you, unless you actually feel sick(er) or have lung function decline. <br><br>Hope this helps!<br>
franzie2984
Member
Also:<br><br>coughing up blood (<span class="st">Hemoptysis) is a symptom I had/have occasionally and is a huge indicator of whether you have MAC or not or need to be treated (if coughing up blood is not common for you prior to culturing MAC). <br><br>I am currently taking ethambutol, azithromycin, and avelox (due to not being able to tolerate rifampin) 3x weekly. <br>
franzie2984
Member
Also:<br><br>coughing up blood (<span class="st">Hemoptysis) is a symptom I had/have occasionally and is a huge indicator of whether you have MAC or not or need to be treated (if coughing up blood is not common for you prior to culturing MAC). <br><br>I am currently taking ethambutol, azithromycin, and avelox (due to not being able to tolerate rifampin) 3x weekly. <br>
franzie2984
Member
Also:<br><br>coughing up blood (<span class="st">Hemoptysis) is a symptom I had/have occasionally and is a huge indicator of whether you have MAC or not or need to be treated (if coughing up blood is not common for you prior to culturing MAC). <br><br>I am currently taking ethambutol, azithromycin, and avelox (due to not being able to tolerate rifampin) 3x weekly. <br>
okay, my doctor got back to me via a short email. He said: There is a legitimate concern for using chronic azithromycin. Patients should be screened for MAC before being started on it. You have had several negative AFB cultures so you do not need to be concerned. Hope that answers your question.
For my own peace of mind I'm going to ask him what statistics he quoted me in Sept clinic that are fuzzy in my mind....
For my own peace of mind I'm going to ask him what statistics he quoted me in Sept clinic that are fuzzy in my mind....
okay, my doctor got back to me via a short email. He said: There is a legitimate concern for using chronic azithromycin. Patients should be screened for MAC before being started on it. You have had several negative AFB cultures so you do not need to be concerned. Hope that answers your question.
For my own peace of mind I'm going to ask him what statistics he quoted me in Sept clinic that are fuzzy in my mind....
For my own peace of mind I'm going to ask him what statistics he quoted me in Sept clinic that are fuzzy in my mind....
okay, my doctor got back to me via a short email. He said: There is a legitimate concern for using chronic azithromycin. Patients should be screened for MAC before being started on it. You have had several negative AFB cultures so you do not need to be concerned. Hope that answers your question.
<br />
<br />For my own peace of mind I'm going to ask him what statistics he quoted me in Sept clinic that are fuzzy in my mind....
<br />
<br />For my own peace of mind I'm going to ask him what statistics he quoted me in Sept clinic that are fuzzy in my mind....
D
DrRoe
Guest
There's an old antibiotic that's used for leprosy which might help with M. Abscessus.. which should be a positive as only about 7 antibiotics work for it now and most of them don't do a very good job.
The abstract is below..
Roe
==========================
Short communication - High efficacy of clofazimine and its synergistic effect with amikacin against rapidly growing mycobacteria
Gwan-Han Shena,b,c, Bo-Da Wua, Shiau-Ting Hud, Chen-Fu Line, Kun-Ming Wuf, Jiann-Hwa Cheng,?
International Journal of Antimicrobial Agents 35 (2010) 400 - 404
The aim of this study was to determine whether clofazimine, dapsone and cycloserine may be suitable antimicrobial agents for the treatment of infections due to rapidly growing mycobacteria (RGM). The antimicrobial activity of the three drugs against 117 Mycobacterium abscessus isolates, 48 Mycobacterium fortuitum isolates and 20 Mycobacterium chelonae isolates was evaluated based on their broth microdilution minimal inhibitory concentrations (MICs) against the isolates. Clofazimine was highly efficacious against these RGM. The vast majority of M. abscessus, M. fortuitum and M. chelonae isolates (99.1%, 91.7% and 100%, respectively) had clofazimine MICs of ?1 mg/L. MIC50 values (MIC for 50% of the organisms) of clofazimine against the isolates ranged from 0.25 mg/L to 0.5 mg/L and MIC90 values (MIC for 90% of the organisms) ranged from 0.5 mg/L to 1.0 mg/L. Cycloserine and dapsone had little or no activity against the isolates. The effects of combined application of clofazimine and amikacin on 40 M. abscessus isolates, 48 M. fortuitum isolates and 20 M. chelonae isolates were evaluated. Addition of 0.25× MIC of amikacin for the isolates to clofazimine reduced clofazimine MICs in all of the M. abscessus and M. chelonae isolates and in 48% of the M. fortuitum isolates tested. Clofazimine, either alone or combined with amikacin, may serve as a promising drug for the treatment of RGM infections.
© 2010 Elsevier B.V. and the International Society of Chemotherapy. All rights reserved.
The abstract is below..
Roe
==========================
Short communication - High efficacy of clofazimine and its synergistic effect with amikacin against rapidly growing mycobacteria
Gwan-Han Shena,b,c, Bo-Da Wua, Shiau-Ting Hud, Chen-Fu Line, Kun-Ming Wuf, Jiann-Hwa Cheng,?
International Journal of Antimicrobial Agents 35 (2010) 400 - 404
The aim of this study was to determine whether clofazimine, dapsone and cycloserine may be suitable antimicrobial agents for the treatment of infections due to rapidly growing mycobacteria (RGM). The antimicrobial activity of the three drugs against 117 Mycobacterium abscessus isolates, 48 Mycobacterium fortuitum isolates and 20 Mycobacterium chelonae isolates was evaluated based on their broth microdilution minimal inhibitory concentrations (MICs) against the isolates. Clofazimine was highly efficacious against these RGM. The vast majority of M. abscessus, M. fortuitum and M. chelonae isolates (99.1%, 91.7% and 100%, respectively) had clofazimine MICs of ?1 mg/L. MIC50 values (MIC for 50% of the organisms) of clofazimine against the isolates ranged from 0.25 mg/L to 0.5 mg/L and MIC90 values (MIC for 90% of the organisms) ranged from 0.5 mg/L to 1.0 mg/L. Cycloserine and dapsone had little or no activity against the isolates. The effects of combined application of clofazimine and amikacin on 40 M. abscessus isolates, 48 M. fortuitum isolates and 20 M. chelonae isolates were evaluated. Addition of 0.25× MIC of amikacin for the isolates to clofazimine reduced clofazimine MICs in all of the M. abscessus and M. chelonae isolates and in 48% of the M. fortuitum isolates tested. Clofazimine, either alone or combined with amikacin, may serve as a promising drug for the treatment of RGM infections.
© 2010 Elsevier B.V. and the International Society of Chemotherapy. All rights reserved.
D
DrRoe
Guest
There's an old antibiotic that's used for leprosy which might help with M. Abscessus.. which should be a positive as only about 7 antibiotics work for it now and most of them don't do a very good job.
The abstract is below..
Roe
==========================
Short communication - High efficacy of clofazimine and its synergistic effect with amikacin against rapidly growing mycobacteria
Gwan-Han Shena,b,c, Bo-Da Wua, Shiau-Ting Hud, Chen-Fu Line, Kun-Ming Wuf, Jiann-Hwa Cheng,?
International Journal of Antimicrobial Agents 35 (2010) 400 - 404
The aim of this study was to determine whether clofazimine, dapsone and cycloserine may be suitable antimicrobial agents for the treatment of infections due to rapidly growing mycobacteria (RGM). The antimicrobial activity of the three drugs against 117 Mycobacterium abscessus isolates, 48 Mycobacterium fortuitum isolates and 20 Mycobacterium chelonae isolates was evaluated based on their broth microdilution minimal inhibitory concentrations (MICs) against the isolates. Clofazimine was highly efficacious against these RGM. The vast majority of M. abscessus, M. fortuitum and M. chelonae isolates (99.1%, 91.7% and 100%, respectively) had clofazimine MICs of ?1 mg/L. MIC50 values (MIC for 50% of the organisms) of clofazimine against the isolates ranged from 0.25 mg/L to 0.5 mg/L and MIC90 values (MIC for 90% of the organisms) ranged from 0.5 mg/L to 1.0 mg/L. Cycloserine and dapsone had little or no activity against the isolates. The effects of combined application of clofazimine and amikacin on 40 M. abscessus isolates, 48 M. fortuitum isolates and 20 M. chelonae isolates were evaluated. Addition of 0.25× MIC of amikacin for the isolates to clofazimine reduced clofazimine MICs in all of the M. abscessus and M. chelonae isolates and in 48% of the M. fortuitum isolates tested. Clofazimine, either alone or combined with amikacin, may serve as a promising drug for the treatment of RGM infections.
© 2010 Elsevier B.V. and the International Society of Chemotherapy. All rights reserved.
The abstract is below..
Roe
==========================
Short communication - High efficacy of clofazimine and its synergistic effect with amikacin against rapidly growing mycobacteria
Gwan-Han Shena,b,c, Bo-Da Wua, Shiau-Ting Hud, Chen-Fu Line, Kun-Ming Wuf, Jiann-Hwa Cheng,?
International Journal of Antimicrobial Agents 35 (2010) 400 - 404
The aim of this study was to determine whether clofazimine, dapsone and cycloserine may be suitable antimicrobial agents for the treatment of infections due to rapidly growing mycobacteria (RGM). The antimicrobial activity of the three drugs against 117 Mycobacterium abscessus isolates, 48 Mycobacterium fortuitum isolates and 20 Mycobacterium chelonae isolates was evaluated based on their broth microdilution minimal inhibitory concentrations (MICs) against the isolates. Clofazimine was highly efficacious against these RGM. The vast majority of M. abscessus, M. fortuitum and M. chelonae isolates (99.1%, 91.7% and 100%, respectively) had clofazimine MICs of ?1 mg/L. MIC50 values (MIC for 50% of the organisms) of clofazimine against the isolates ranged from 0.25 mg/L to 0.5 mg/L and MIC90 values (MIC for 90% of the organisms) ranged from 0.5 mg/L to 1.0 mg/L. Cycloserine and dapsone had little or no activity against the isolates. The effects of combined application of clofazimine and amikacin on 40 M. abscessus isolates, 48 M. fortuitum isolates and 20 M. chelonae isolates were evaluated. Addition of 0.25× MIC of amikacin for the isolates to clofazimine reduced clofazimine MICs in all of the M. abscessus and M. chelonae isolates and in 48% of the M. fortuitum isolates tested. Clofazimine, either alone or combined with amikacin, may serve as a promising drug for the treatment of RGM infections.
© 2010 Elsevier B.V. and the International Society of Chemotherapy. All rights reserved.
D
DrRoe
Guest
There's an old antibiotic that's used for leprosy which might help with M. Abscessus.. which should be a positive as only about 7 antibiotics work for it now and most of them don't do a very good job.
<br />
<br />The abstract is below..
<br />
<br />Roe
<br />==========================
<br />Short communication - High efficacy of clofazimine and its synergistic effect with amikacin against rapidly growing mycobacteria
<br />Gwan-Han Shena,b,c, Bo-Da Wua, Shiau-Ting Hud, Chen-Fu Line, Kun-Ming Wuf, Jiann-Hwa Cheng,?
<br />
<br />International Journal of Antimicrobial Agents 35 (2010) 400 - 404
<br />
<br />The aim of this study was to determine whether clofazimine, dapsone and cycloserine may be suitable antimicrobial agents for the treatment of infections due to rapidly growing mycobacteria (RGM). The antimicrobial activity of the three drugs against 117 Mycobacterium abscessus isolates, 48 Mycobacterium fortuitum isolates and 20 Mycobacterium chelonae isolates was evaluated based on their broth microdilution minimal inhibitory concentrations (MICs) against the isolates. Clofazimine was highly efficacious against these RGM. The vast majority of M. abscessus, M. fortuitum and M. chelonae isolates (99.1%, 91.7% and 100%, respectively) had clofazimine MICs of ?1 mg/L. MIC50 values (MIC for 50% of the organisms) of clofazimine against the isolates ranged from 0.25 mg/L to 0.5 mg/L and MIC90 values (MIC for 90% of the organisms) ranged from 0.5 mg/L to 1.0 mg/L. Cycloserine and dapsone had little or no activity against the isolates. The effects of combined application of clofazimine and amikacin on 40 M. abscessus isolates, 48 M. fortuitum isolates and 20 M. chelonae isolates were evaluated. Addition of 0.25× MIC of amikacin for the isolates to clofazimine reduced clofazimine MICs in all of the M. abscessus and M. chelonae isolates and in 48% of the M. fortuitum isolates tested. Clofazimine, either alone or combined with amikacin, may serve as a promising drug for the treatment of RGM infections.
<br />© 2010 Elsevier B.V. and the International Society of Chemotherapy. All rights reserved.
<br />
<br />The abstract is below..
<br />
<br />Roe
<br />==========================
<br />Short communication - High efficacy of clofazimine and its synergistic effect with amikacin against rapidly growing mycobacteria
<br />Gwan-Han Shena,b,c, Bo-Da Wua, Shiau-Ting Hud, Chen-Fu Line, Kun-Ming Wuf, Jiann-Hwa Cheng,?
<br />
<br />International Journal of Antimicrobial Agents 35 (2010) 400 - 404
<br />
<br />The aim of this study was to determine whether clofazimine, dapsone and cycloserine may be suitable antimicrobial agents for the treatment of infections due to rapidly growing mycobacteria (RGM). The antimicrobial activity of the three drugs against 117 Mycobacterium abscessus isolates, 48 Mycobacterium fortuitum isolates and 20 Mycobacterium chelonae isolates was evaluated based on their broth microdilution minimal inhibitory concentrations (MICs) against the isolates. Clofazimine was highly efficacious against these RGM. The vast majority of M. abscessus, M. fortuitum and M. chelonae isolates (99.1%, 91.7% and 100%, respectively) had clofazimine MICs of ?1 mg/L. MIC50 values (MIC for 50% of the organisms) of clofazimine against the isolates ranged from 0.25 mg/L to 0.5 mg/L and MIC90 values (MIC for 90% of the organisms) ranged from 0.5 mg/L to 1.0 mg/L. Cycloserine and dapsone had little or no activity against the isolates. The effects of combined application of clofazimine and amikacin on 40 M. abscessus isolates, 48 M. fortuitum isolates and 20 M. chelonae isolates were evaluated. Addition of 0.25× MIC of amikacin for the isolates to clofazimine reduced clofazimine MICs in all of the M. abscessus and M. chelonae isolates and in 48% of the M. fortuitum isolates tested. Clofazimine, either alone or combined with amikacin, may serve as a promising drug for the treatment of RGM infections.
<br />© 2010 Elsevier B.V. and the International Society of Chemotherapy. All rights reserved.
T
TonyaH
Guest
Andrew was on maintenance azythromycin 250 mg MWF for three and a half years before his first m. abcessus culture. The doctor immediately discontinued the azithro upon finding abcessus. Oddly, though, during his last round of ivs azithromycin was one of the meds used in the eight week cocktail they used on him.