Do you have this?

mom2lillian

New member
Well I posted a couple days ago about my cough being 'different' than normal and I was concerned my IV's were not doing the 'trick'. Today was my 2 week check up and my #'s were down 2% from last week resulting in me gaining back only 3 of the 15% I have lost since feb <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> after two weeks of TOBI and ceftaz!

The only two notable items I culture are the achromobacter/alcoligenes xylosoxidans and mucoid PA. My PA is sensitive to everything in the IV realm. Evidentially AX is a very resistant bug by nature. Mine shows resistant to ceftaz and TOBI. I know the doc who started the IV's (not the one there today) was looking at my PA cultures when picking drugs and probably not even considering the AX as it was never believed ot be what was causing my problems.

Sooo, new game plan is week 3 (ugh) we will go to TOBI merropenam-sp? (I have had this before) and oral levaquin; the later two of the three my AX shows intermediate sensitivity to.

I have never failed to bounce back like this. I am sure the week 3 plan will work but I have alot anxiety about what if it doesn't the mere idea of loosing 10% of my functions scares the crap out of me.

<b>Does anyone else have experience with AX and if so what can you tell me about its role in your exacerbations and what antibiotics do you take?</b>

thanks
 

mom2lillian

New member
Well I posted a couple days ago about my cough being 'different' than normal and I was concerned my IV's were not doing the 'trick'. Today was my 2 week check up and my #'s were down 2% from last week resulting in me gaining back only 3 of the 15% I have lost since feb <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> after two weeks of TOBI and ceftaz!

The only two notable items I culture are the achromobacter/alcoligenes xylosoxidans and mucoid PA. My PA is sensitive to everything in the IV realm. Evidentially AX is a very resistant bug by nature. Mine shows resistant to ceftaz and TOBI. I know the doc who started the IV's (not the one there today) was looking at my PA cultures when picking drugs and probably not even considering the AX as it was never believed ot be what was causing my problems.

Sooo, new game plan is week 3 (ugh) we will go to TOBI merropenam-sp? (I have had this before) and oral levaquin; the later two of the three my AX shows intermediate sensitivity to.

I have never failed to bounce back like this. I am sure the week 3 plan will work but I have alot anxiety about what if it doesn't the mere idea of loosing 10% of my functions scares the crap out of me.

<b>Does anyone else have experience with AX and if so what can you tell me about its role in your exacerbations and what antibiotics do you take?</b>

thanks
 

mom2lillian

New member
Well I posted a couple days ago about my cough being 'different' than normal and I was concerned my IV's were not doing the 'trick'. Today was my 2 week check up and my #'s were down 2% from last week resulting in me gaining back only 3 of the 15% I have lost since feb <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> after two weeks of TOBI and ceftaz!

The only two notable items I culture are the achromobacter/alcoligenes xylosoxidans and mucoid PA. My PA is sensitive to everything in the IV realm. Evidentially AX is a very resistant bug by nature. Mine shows resistant to ceftaz and TOBI. I know the doc who started the IV's (not the one there today) was looking at my PA cultures when picking drugs and probably not even considering the AX as it was never believed ot be what was causing my problems.

Sooo, new game plan is week 3 (ugh) we will go to TOBI merropenam-sp? (I have had this before) and oral levaquin; the later two of the three my AX shows intermediate sensitivity to.

I have never failed to bounce back like this. I am sure the week 3 plan will work but I have alot anxiety about what if it doesn't the mere idea of loosing 10% of my functions scares the crap out of me.

<b>Does anyone else have experience with AX and if so what can you tell me about its role in your exacerbations and what antibiotics do you take?</b>

thanks
 

mom2lillian

New member
Well I posted a couple days ago about my cough being 'different' than normal and I was concerned my IV's were not doing the 'trick'. Today was my 2 week check up and my #'s were down 2% from last week resulting in me gaining back only 3 of the 15% I have lost since feb <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> after two weeks of TOBI and ceftaz!

The only two notable items I culture are the achromobacter/alcoligenes xylosoxidans and mucoid PA. My PA is sensitive to everything in the IV realm. Evidentially AX is a very resistant bug by nature. Mine shows resistant to ceftaz and TOBI. I know the doc who started the IV's (not the one there today) was looking at my PA cultures when picking drugs and probably not even considering the AX as it was never believed ot be what was causing my problems.

Sooo, new game plan is week 3 (ugh) we will go to TOBI merropenam-sp? (I have had this before) and oral levaquin; the later two of the three my AX shows intermediate sensitivity to.

I have never failed to bounce back like this. I am sure the week 3 plan will work but I have alot anxiety about what if it doesn't the mere idea of loosing 10% of my functions scares the crap out of me.

<b>Does anyone else have experience with AX and if so what can you tell me about its role in your exacerbations and what antibiotics do you take?</b>

thanks
 

mom2lillian

New member
Well I posted a couple days ago about my cough being 'different' than normal and I was concerned my IV's were not doing the 'trick'. Today was my 2 week check up and my #'s were down 2% from last week resulting in me gaining back only 3 of the 15% I have lost since feb <img src="i/expressions/face-icon-small-disgusted.gif" border="0"> after two weeks of TOBI and ceftaz!
<br />
<br />The only two notable items I culture are the achromobacter/alcoligenes xylosoxidans and mucoid PA. My PA is sensitive to everything in the IV realm. Evidentially AX is a very resistant bug by nature. Mine shows resistant to ceftaz and TOBI. I know the doc who started the IV's (not the one there today) was looking at my PA cultures when picking drugs and probably not even considering the AX as it was never believed ot be what was causing my problems.
<br />
<br />Sooo, new game plan is week 3 (ugh) we will go to TOBI merropenam-sp? (I have had this before) and oral levaquin; the later two of the three my AX shows intermediate sensitivity to.
<br />
<br />I have never failed to bounce back like this. I am sure the week 3 plan will work but I have alot anxiety about what if it doesn't the mere idea of loosing 10% of my functions scares the crap out of me.
<br />
<br /><b>Does anyone else have experience with AX and if so what can you tell me about its role in your exacerbations and what antibiotics do you take?</b>
<br />
<br />thanks
<br />
<br />
 

Sevenstars

New member
I do! I've had it over a year, I think perhaps closer to 2 years.

I noticed my cough was different during my last hospitalization, and my mucous tasted very different too. It was even orange-colored for a while. o_O No, not blood, either.

Like my other weird bugs, my doctors have never tried to treat it specificially. They generally do the bomb and pray attempt - they shoot for the PA and hope that it gets the rest of the stuff in my lungs. I think in October I was on Meropenem and perhaps Zosyn(?) which are my standard IV meds. Oh and high dose Tobramycin too (the once a day stuff). I probably have taken other IVs to combat these bugs but I can't remember them right now.

I was able to bounce back quite nicely so I guess the bugs weren't that much of a problem for me. I have another appointment in a week so I'll be able to tell you if my cultures still show this or not.

Rest up and I hope you feel better soon. <img src="i/expressions/heart.gif" border="0">
 

Sevenstars

New member
I do! I've had it over a year, I think perhaps closer to 2 years.

I noticed my cough was different during my last hospitalization, and my mucous tasted very different too. It was even orange-colored for a while. o_O No, not blood, either.

Like my other weird bugs, my doctors have never tried to treat it specificially. They generally do the bomb and pray attempt - they shoot for the PA and hope that it gets the rest of the stuff in my lungs. I think in October I was on Meropenem and perhaps Zosyn(?) which are my standard IV meds. Oh and high dose Tobramycin too (the once a day stuff). I probably have taken other IVs to combat these bugs but I can't remember them right now.

I was able to bounce back quite nicely so I guess the bugs weren't that much of a problem for me. I have another appointment in a week so I'll be able to tell you if my cultures still show this or not.

Rest up and I hope you feel better soon. <img src="i/expressions/heart.gif" border="0">
 

Sevenstars

New member
I do! I've had it over a year, I think perhaps closer to 2 years.

I noticed my cough was different during my last hospitalization, and my mucous tasted very different too. It was even orange-colored for a while. o_O No, not blood, either.

Like my other weird bugs, my doctors have never tried to treat it specificially. They generally do the bomb and pray attempt - they shoot for the PA and hope that it gets the rest of the stuff in my lungs. I think in October I was on Meropenem and perhaps Zosyn(?) which are my standard IV meds. Oh and high dose Tobramycin too (the once a day stuff). I probably have taken other IVs to combat these bugs but I can't remember them right now.

I was able to bounce back quite nicely so I guess the bugs weren't that much of a problem for me. I have another appointment in a week so I'll be able to tell you if my cultures still show this or not.

Rest up and I hope you feel better soon. <img src="i/expressions/heart.gif" border="0">
 

Sevenstars

New member
I do! I've had it over a year, I think perhaps closer to 2 years.

I noticed my cough was different during my last hospitalization, and my mucous tasted very different too. It was even orange-colored for a while. o_O No, not blood, either.

Like my other weird bugs, my doctors have never tried to treat it specificially. They generally do the bomb and pray attempt - they shoot for the PA and hope that it gets the rest of the stuff in my lungs. I think in October I was on Meropenem and perhaps Zosyn(?) which are my standard IV meds. Oh and high dose Tobramycin too (the once a day stuff). I probably have taken other IVs to combat these bugs but I can't remember them right now.

I was able to bounce back quite nicely so I guess the bugs weren't that much of a problem for me. I have another appointment in a week so I'll be able to tell you if my cultures still show this or not.

Rest up and I hope you feel better soon. <img src="i/expressions/heart.gif" border="0">
 

Sevenstars

New member
I do! I've had it over a year, I think perhaps closer to 2 years.
<br />
<br />I noticed my cough was different during my last hospitalization, and my mucous tasted very different too. It was even orange-colored for a while. o_O No, not blood, either.
<br />
<br />Like my other weird bugs, my doctors have never tried to treat it specificially. They generally do the bomb and pray attempt - they shoot for the PA and hope that it gets the rest of the stuff in my lungs. I think in October I was on Meropenem and perhaps Zosyn(?) which are my standard IV meds. Oh and high dose Tobramycin too (the once a day stuff). I probably have taken other IVs to combat these bugs but I can't remember them right now.
<br />
<br />I was able to bounce back quite nicely so I guess the bugs weren't that much of a problem for me. I have another appointment in a week so I'll be able to tell you if my cultures still show this or not.
<br />
<br />Rest up and I hope you feel better soon. <img src="i/expressions/heart.gif" border="0">
 

mom2lillian

New member
Here is an interesting snippit I found. Funny, I did not know this was one that you could erradicate. I believe I have had it since my diagnosis ~7 years ago though I could be wrong, I will have to look into that.


Although "A. xylosoxidans," a motile, gram-negative bacillus, has been recognized for many years as being capable of causing infection in persons with CF, the proper nomenclature of this species has presented an ongoing challenge. The species has been consecutively named Achromobacter xylosoxidans, Alcaligenes denitrificans subsp. xylosoxidans, and Alcaligenes xylosoxidans subsp. xylosoxidans.[55] Most recently, the name Achromobacter xylosoxidans was again proposed but this has not been uniformly accepted. Thus the species is currently correctly called either Achromobacter xylosoxidans or Alcaligenes xylosoxidans. Correct identification can be difficult with many of these organisms because the biochemical tests in common use are less reliable; researchers have suggested alternatives, including fluorescence in situ hybridization[56] and polymerase chain reaction (PCR)-based assays.[57]

Incidence in CF seems to vary from center to center, and the organism commonly coexists with other airway pathogens. Because infection is so often transient, detection and reported rates of infection are strongly influenced by the frequency of sputum culture. Data from the Cystic Fibrosis Foundation National Registry indicate that in 1996 1.9% of U.S. CF patients were infected with A. xylosoxidans; however, this species was detected by a core laboratory in 8.7% of 595 patients enrolled in the 6-month TSI clinical trials during approximately the same time period. A recent study by Tan and colleagues indicates that 13 (2.3%) of 557 patients in their pediatric and adult CF units were chronically infected with this organism; a further 31 (5.6%) patients were intermittently colonized.[58] Ronne Hanson et al identified a subgroup of their infected patients who were characterized by rapidly rising levels of specific anti-A. xylosoxidans antibodies who did experience a more rapid decline in lung function after infection than controls, although the group as a whole were not significantly affected.[59] With regard to acquisition, there is little evidence that it is acquired by patient-to-patient cross infection.[41,60] Persistence seems to be variable once the lung is infected, from transient to up to 6 years in one patient. Based on the available evidence it does not seem that infection with A. xylosoxidans contributes greatly to clinical deterioration in CF patients. The organism is also encountered outside the context of CF,[61] leading to bacteremia, meningitis, pneumonia, endocarditis, peritonitis, osteomyelitis, urinary tract infection, and endophthalmitis. Most infections are nosocomially acquired, with neonates, burn victims, and other immunocompromised patients being at greatest risk. As with many other CF pathogens, A. xylosoxidans are frequently resistant to multiple antibiotics.[62] In cases where treatment may be warranted based on the clinical situation, antibiotics that demonstrate the greatest activity in vitro include minocycline, imipenem, meropenem, piperacillin, and piperacillin-tazobactam. Combinations of antibiotics that have shown additive activity include chloramphenicol plus minocycline, and ciprofloxacin plus either imipenem or meropenem.
 

mom2lillian

New member
Here is an interesting snippit I found. Funny, I did not know this was one that you could erradicate. I believe I have had it since my diagnosis ~7 years ago though I could be wrong, I will have to look into that.


Although "A. xylosoxidans," a motile, gram-negative bacillus, has been recognized for many years as being capable of causing infection in persons with CF, the proper nomenclature of this species has presented an ongoing challenge. The species has been consecutively named Achromobacter xylosoxidans, Alcaligenes denitrificans subsp. xylosoxidans, and Alcaligenes xylosoxidans subsp. xylosoxidans.[55] Most recently, the name Achromobacter xylosoxidans was again proposed but this has not been uniformly accepted. Thus the species is currently correctly called either Achromobacter xylosoxidans or Alcaligenes xylosoxidans. Correct identification can be difficult with many of these organisms because the biochemical tests in common use are less reliable; researchers have suggested alternatives, including fluorescence in situ hybridization[56] and polymerase chain reaction (PCR)-based assays.[57]

Incidence in CF seems to vary from center to center, and the organism commonly coexists with other airway pathogens. Because infection is so often transient, detection and reported rates of infection are strongly influenced by the frequency of sputum culture. Data from the Cystic Fibrosis Foundation National Registry indicate that in 1996 1.9% of U.S. CF patients were infected with A. xylosoxidans; however, this species was detected by a core laboratory in 8.7% of 595 patients enrolled in the 6-month TSI clinical trials during approximately the same time period. A recent study by Tan and colleagues indicates that 13 (2.3%) of 557 patients in their pediatric and adult CF units were chronically infected with this organism; a further 31 (5.6%) patients were intermittently colonized.[58] Ronne Hanson et al identified a subgroup of their infected patients who were characterized by rapidly rising levels of specific anti-A. xylosoxidans antibodies who did experience a more rapid decline in lung function after infection than controls, although the group as a whole were not significantly affected.[59] With regard to acquisition, there is little evidence that it is acquired by patient-to-patient cross infection.[41,60] Persistence seems to be variable once the lung is infected, from transient to up to 6 years in one patient. Based on the available evidence it does not seem that infection with A. xylosoxidans contributes greatly to clinical deterioration in CF patients. The organism is also encountered outside the context of CF,[61] leading to bacteremia, meningitis, pneumonia, endocarditis, peritonitis, osteomyelitis, urinary tract infection, and endophthalmitis. Most infections are nosocomially acquired, with neonates, burn victims, and other immunocompromised patients being at greatest risk. As with many other CF pathogens, A. xylosoxidans are frequently resistant to multiple antibiotics.[62] In cases where treatment may be warranted based on the clinical situation, antibiotics that demonstrate the greatest activity in vitro include minocycline, imipenem, meropenem, piperacillin, and piperacillin-tazobactam. Combinations of antibiotics that have shown additive activity include chloramphenicol plus minocycline, and ciprofloxacin plus either imipenem or meropenem.
 

mom2lillian

New member
Here is an interesting snippit I found. Funny, I did not know this was one that you could erradicate. I believe I have had it since my diagnosis ~7 years ago though I could be wrong, I will have to look into that.


Although "A. xylosoxidans," a motile, gram-negative bacillus, has been recognized for many years as being capable of causing infection in persons with CF, the proper nomenclature of this species has presented an ongoing challenge. The species has been consecutively named Achromobacter xylosoxidans, Alcaligenes denitrificans subsp. xylosoxidans, and Alcaligenes xylosoxidans subsp. xylosoxidans.[55] Most recently, the name Achromobacter xylosoxidans was again proposed but this has not been uniformly accepted. Thus the species is currently correctly called either Achromobacter xylosoxidans or Alcaligenes xylosoxidans. Correct identification can be difficult with many of these organisms because the biochemical tests in common use are less reliable; researchers have suggested alternatives, including fluorescence in situ hybridization[56] and polymerase chain reaction (PCR)-based assays.[57]

Incidence in CF seems to vary from center to center, and the organism commonly coexists with other airway pathogens. Because infection is so often transient, detection and reported rates of infection are strongly influenced by the frequency of sputum culture. Data from the Cystic Fibrosis Foundation National Registry indicate that in 1996 1.9% of U.S. CF patients were infected with A. xylosoxidans; however, this species was detected by a core laboratory in 8.7% of 595 patients enrolled in the 6-month TSI clinical trials during approximately the same time period. A recent study by Tan and colleagues indicates that 13 (2.3%) of 557 patients in their pediatric and adult CF units were chronically infected with this organism; a further 31 (5.6%) patients were intermittently colonized.[58] Ronne Hanson et al identified a subgroup of their infected patients who were characterized by rapidly rising levels of specific anti-A. xylosoxidans antibodies who did experience a more rapid decline in lung function after infection than controls, although the group as a whole were not significantly affected.[59] With regard to acquisition, there is little evidence that it is acquired by patient-to-patient cross infection.[41,60] Persistence seems to be variable once the lung is infected, from transient to up to 6 years in one patient. Based on the available evidence it does not seem that infection with A. xylosoxidans contributes greatly to clinical deterioration in CF patients. The organism is also encountered outside the context of CF,[61] leading to bacteremia, meningitis, pneumonia, endocarditis, peritonitis, osteomyelitis, urinary tract infection, and endophthalmitis. Most infections are nosocomially acquired, with neonates, burn victims, and other immunocompromised patients being at greatest risk. As with many other CF pathogens, A. xylosoxidans are frequently resistant to multiple antibiotics.[62] In cases where treatment may be warranted based on the clinical situation, antibiotics that demonstrate the greatest activity in vitro include minocycline, imipenem, meropenem, piperacillin, and piperacillin-tazobactam. Combinations of antibiotics that have shown additive activity include chloramphenicol plus minocycline, and ciprofloxacin plus either imipenem or meropenem.
 

mom2lillian

New member
Here is an interesting snippit I found. Funny, I did not know this was one that you could erradicate. I believe I have had it since my diagnosis ~7 years ago though I could be wrong, I will have to look into that.


Although "A. xylosoxidans," a motile, gram-negative bacillus, has been recognized for many years as being capable of causing infection in persons with CF, the proper nomenclature of this species has presented an ongoing challenge. The species has been consecutively named Achromobacter xylosoxidans, Alcaligenes denitrificans subsp. xylosoxidans, and Alcaligenes xylosoxidans subsp. xylosoxidans.[55] Most recently, the name Achromobacter xylosoxidans was again proposed but this has not been uniformly accepted. Thus the species is currently correctly called either Achromobacter xylosoxidans or Alcaligenes xylosoxidans. Correct identification can be difficult with many of these organisms because the biochemical tests in common use are less reliable; researchers have suggested alternatives, including fluorescence in situ hybridization[56] and polymerase chain reaction (PCR)-based assays.[57]

Incidence in CF seems to vary from center to center, and the organism commonly coexists with other airway pathogens. Because infection is so often transient, detection and reported rates of infection are strongly influenced by the frequency of sputum culture. Data from the Cystic Fibrosis Foundation National Registry indicate that in 1996 1.9% of U.S. CF patients were infected with A. xylosoxidans; however, this species was detected by a core laboratory in 8.7% of 595 patients enrolled in the 6-month TSI clinical trials during approximately the same time period. A recent study by Tan and colleagues indicates that 13 (2.3%) of 557 patients in their pediatric and adult CF units were chronically infected with this organism; a further 31 (5.6%) patients were intermittently colonized.[58] Ronne Hanson et al identified a subgroup of their infected patients who were characterized by rapidly rising levels of specific anti-A. xylosoxidans antibodies who did experience a more rapid decline in lung function after infection than controls, although the group as a whole were not significantly affected.[59] With regard to acquisition, there is little evidence that it is acquired by patient-to-patient cross infection.[41,60] Persistence seems to be variable once the lung is infected, from transient to up to 6 years in one patient. Based on the available evidence it does not seem that infection with A. xylosoxidans contributes greatly to clinical deterioration in CF patients. The organism is also encountered outside the context of CF,[61] leading to bacteremia, meningitis, pneumonia, endocarditis, peritonitis, osteomyelitis, urinary tract infection, and endophthalmitis. Most infections are nosocomially acquired, with neonates, burn victims, and other immunocompromised patients being at greatest risk. As with many other CF pathogens, A. xylosoxidans are frequently resistant to multiple antibiotics.[62] In cases where treatment may be warranted based on the clinical situation, antibiotics that demonstrate the greatest activity in vitro include minocycline, imipenem, meropenem, piperacillin, and piperacillin-tazobactam. Combinations of antibiotics that have shown additive activity include chloramphenicol plus minocycline, and ciprofloxacin plus either imipenem or meropenem.
 

mom2lillian

New member
<br />Here is an interesting snippit I found. Funny, I did not know this was one that you could erradicate. I believe I have had it since my diagnosis ~7 years ago though I could be wrong, I will have to look into that.
<br />
<br />
<br />Although "A. xylosoxidans," a motile, gram-negative bacillus, has been recognized for many years as being capable of causing infection in persons with CF, the proper nomenclature of this species has presented an ongoing challenge. The species has been consecutively named Achromobacter xylosoxidans, Alcaligenes denitrificans subsp. xylosoxidans, and Alcaligenes xylosoxidans subsp. xylosoxidans.[55] Most recently, the name Achromobacter xylosoxidans was again proposed but this has not been uniformly accepted. Thus the species is currently correctly called either Achromobacter xylosoxidans or Alcaligenes xylosoxidans. Correct identification can be difficult with many of these organisms because the biochemical tests in common use are less reliable; researchers have suggested alternatives, including fluorescence in situ hybridization[56] and polymerase chain reaction (PCR)-based assays.[57]
<br />
<br />Incidence in CF seems to vary from center to center, and the organism commonly coexists with other airway pathogens. Because infection is so often transient, detection and reported rates of infection are strongly influenced by the frequency of sputum culture. Data from the Cystic Fibrosis Foundation National Registry indicate that in 1996 1.9% of U.S. CF patients were infected with A. xylosoxidans; however, this species was detected by a core laboratory in 8.7% of 595 patients enrolled in the 6-month TSI clinical trials during approximately the same time period. A recent study by Tan and colleagues indicates that 13 (2.3%) of 557 patients in their pediatric and adult CF units were chronically infected with this organism; a further 31 (5.6%) patients were intermittently colonized.[58] Ronne Hanson et al identified a subgroup of their infected patients who were characterized by rapidly rising levels of specific anti-A. xylosoxidans antibodies who did experience a more rapid decline in lung function after infection than controls, although the group as a whole were not significantly affected.[59] With regard to acquisition, there is little evidence that it is acquired by patient-to-patient cross infection.[41,60] Persistence seems to be variable once the lung is infected, from transient to up to 6 years in one patient. Based on the available evidence it does not seem that infection with A. xylosoxidans contributes greatly to clinical deterioration in CF patients. The organism is also encountered outside the context of CF,[61] leading to bacteremia, meningitis, pneumonia, endocarditis, peritonitis, osteomyelitis, urinary tract infection, and endophthalmitis. Most infections are nosocomially acquired, with neonates, burn victims, and other immunocompromised patients being at greatest risk. As with many other CF pathogens, A. xylosoxidans are frequently resistant to multiple antibiotics.[62] In cases where treatment may be warranted based on the clinical situation, antibiotics that demonstrate the greatest activity in vitro include minocycline, imipenem, meropenem, piperacillin, and piperacillin-tazobactam. Combinations of antibiotics that have shown additive activity include chloramphenicol plus minocycline, and ciprofloxacin plus either imipenem or meropenem.
<br />
 
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