Mycobacterium

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mamerth

New member
I didn't have any major symptoms to alert me that I had a Microbacterium. I was shocked when the told me. Since then I have had night sweats and pathetic lung function numbers. I had a CT Scan around the time of them diagnosing me with this new bug.
<br />
<br />We are still struggling with my lung numbers. My last tune up my numbers when down rather than up. Really frustrating.
 
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windex125

Guest
I did not have any major symptoms either, it just showed up in the curture and that was back in 99 I think. I was treated only one time with a cocktail of drugs for 8mts. that turned me a nice color orange. I saw a ID doctor only that one time. Although my port went in in 01 and have been on IV's many many times since. I do not see a ID doctor for this bacteria which shows up in every culture and it has eaten away at my right lung like swiss cheese and it is totalled collasped and does not show up on the xray anymore just a one lung picture. Yet I do not feel as bad as I should? Weird for sure. I feel we treat my flareups with the IV meds it keeps it somewhat in ck? I do not run fevers often though pnemonia comes up just abt every year, but my last IV was back in 2009 then I did Cayston in 2010 back in October. Again I think everone's body is different and my doctor and I do our best to keep me well my PFT's are in the 40 range for years now. I have 2 friends I am going to use the word normal no Cf and both tested for MAC and went on a 12mt. drug treatment. It is true it comes from water and dirt? I was a avid gardener and stoppped what do you all think? Pat-56/CF
 
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windex125

Guest
I did not have any major symptoms either, it just showed up in the curture and that was back in 99 I think. I was treated only one time with a cocktail of drugs for 8mts. that turned me a nice color orange. I saw a ID doctor only that one time. Although my port went in in 01 and have been on IV's many many times since. I do not see a ID doctor for this bacteria which shows up in every culture and it has eaten away at my right lung like swiss cheese and it is totalled collasped and does not show up on the xray anymore just a one lung picture. Yet I do not feel as bad as I should? Weird for sure. I feel we treat my flareups with the IV meds it keeps it somewhat in ck? I do not run fevers often though pnemonia comes up just abt every year, but my last IV was back in 2009 then I did Cayston in 2010 back in October. Again I think everone's body is different and my doctor and I do our best to keep me well my PFT's are in the 40 range for years now. I have 2 friends I am going to use the word normal no Cf and both tested for MAC and went on a 12mt. drug treatment. It is true it comes from water and dirt? I was a avid gardener and stoppped what do you all think? Pat-56/CF
 
W

windex125

Guest
I did not have any major symptoms either, it just showed up in the curture and that was back in 99 I think. I was treated only one time with a cocktail of drugs for 8mts. that turned me a nice color orange. I saw a ID doctor only that one time. Although my port went in in 01 and have been on IV's many many times since. I do not see a ID doctor for this bacteria which shows up in every culture and it has eaten away at my right lung like swiss cheese and it is totalled collasped and does not show up on the xray anymore just a one lung picture. Yet I do not feel as bad as I should? Weird for sure. I feel we treat my flareups with the IV meds it keeps it somewhat in ck? I do not run fevers often though pnemonia comes up just abt every year, but my last IV was back in 2009 then I did Cayston in 2010 back in October. Again I think everone's body is different and my doctor and I do our best to keep me well my PFT's are in the 40 range for years now. I have 2 friends I am going to use the word normal no Cf and both tested for MAC and went on a 12mt. drug treatment. It is true it comes from water and dirt? I was a avid gardener and stoppped what do you all think? Pat-56/CF
 
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Murgie

New member
Do any of you have information on MAI, a relative of MAC, but different, I am certainly anxious to learn about this as my 13 year old son has it, and his cough is the worst ever, he is constantly fatigued. He has always had good lung function, and is rarely symptomatic of anything. He has not had a CT scan, should I request one
 
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Murgie

New member
Do any of you have information on MAI, a relative of MAC, but different, I am certainly anxious to learn about this as my 13 year old son has it, and his cough is the worst ever, he is constantly fatigued. He has always had good lung function, and is rarely symptomatic of anything. He has not had a CT scan, should I request one
 
M

Murgie

New member
Do any of you have information on MAI, a relative of MAC, but different, I am certainly anxious to learn about this as my 13 year old son has it, and his cough is the worst ever, he is constantly fatigued. He has always had good lung function, and is rarely symptomatic of anything. He has not had a CT scan, should I request one
 
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Nervous1

New member
I had a bad exacerbation at the end of February and ever since then, despite all kinds of oral abx, I have had a low grade fever for a few hours every afternoon.  At the moment I feel fine except for that. 
My pulmo did a bronchoscopy 3 weeks ago because he suspects mycobaterium, and I haven't been able to provide a sufficient sample for culture.  It will take a few more weeks until I get the results.  Not sure what to expect.
I have bronchiectasis, but not CF.
 
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Nervous1

New member
I had a bad exacerbation at the end of February and ever since then, despite all kinds of oral abx, I have had a low grade fever for a few hours every afternoon. At the moment I feel fine except for that.
My pulmo did a bronchoscopy 3 weeks ago because he suspects mycobaterium, and I haven't been able to provide a sufficientsample for culture. It will take a few more weeks until I get the results. Not sure what to expect.
I have bronchiectasis, but not CF.
 
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Nervous1

New member
<p>I had a bad exacerbation at the end of February and ever since then, despite all kinds of oral abx, I have had a low grade fever for a few hours every afternoon. At the moment I feel fine except for that.
<p>My pulmo did a bronchoscopy 3 weeks ago because he suspects mycobaterium, and I haven't been able to provide a sufficientsample for culture. It will take a few more weeks until I get the results. Not sure what to expect.
<p>I have bronchiectasis, but not CF.
 
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theLostMiler

New member
I think fevers are a big flag for NTM, just b/c regular TB causes fevers and night sweats. Also look for diminishing appetite. Fevers and loss of appetite obviously really drain your energy and make you feel fatigued.

Sam's mom, I would suggest the CT scan, they may already have it planned out but not have told you, but almost everyone I have talked to with any form of NTM almost always gets a CT scan to see what/if there is any damage and to get a baseline CT.
 
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theLostMiler

New member
I think fevers are a big flag for NTM, just b/c regular TB causes fevers and night sweats. Also look for diminishing appetite. Fevers and loss of appetite obviously really drain your energy and make you feel fatigued.

Sam's mom, I would suggest the CT scan, they may already have it planned out but not have told you, but almost everyone I have talked to with any form of NTM almost always gets a CT scan to see what/if there is any damage and to get a baseline CT.
 
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theLostMiler

New member
I think fevers are a big flag for NTM, just b/c regular TB causes fevers and night sweats. Also look for diminishing appetite. Fevers and loss of appetite obviously really drain your energy and make you feel fatigued.
<br />
<br />Sam's mom, I would suggest the CT scan, they may already have it planned out but not have told you, but almost everyone I have talked to with any form of NTM almost always gets a CT scan to see what/if there is any damage and to get a baseline CT.
 
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snowwhite

New member
Hello everyone
I have question for you. My dad diagnosed with myc. abscessus almost 4 years ago. I'm not sure if it's microbacterium or myco but I think myco cause most of the things you said matches with the the symptoms and threatments . My question is does this illness repeat itself? my dad used antibiotics for two years then doctor said it's enough and wanted to see my dad three times a year for check up. Since two years dad is just going for check up. General conditon of my dad is ok but sometimes a little bit of blood was coming but it stoped in one day. 3 weeks ago he bleeded again. He went to doctor. Doc took x-ray and tomography and he said illness repeated itself again (a littlle bit worse than before). He's going to talk to other doctors to decide about the threatment. Is this repeat normal? Is this illness serious or is it normal that it repeat itself and get better with antibiotics? We really don't know anything about this illness. I would be happy if you share your knowledge about this with me. Thanks in advance
 
S

snowwhite

New member
Hello everyone
I have question for you. My dad diagnosed with myc. abscessus almost 4 years ago. I'm not sure if it's microbacterium or myco but I think myco cause most of the things you said matches with the the symptoms and threatments . My question is does this illness repeat itself? my dad used antibiotics for two years then doctor said it's enough and wanted to see my dad three times a year for check up. Since two years dad is just going for check up. General conditon of my dad is ok but sometimes a little bit of blood was coming but it stoped in one day. 3 weeks ago he bleeded again. He went to doctor. Doc took x-ray and tomography and he said illness repeated itself again (a littlle bit worse than before). He's going to talk to other doctors to decide about the threatment. Is this repeat normal? Is this illness serious or is it normal that it repeat itself and get better with antibiotics? We really don't know anything about this illness. I would be happy if you share your knowledge about this with me. Thanks in advance
 
S

snowwhite

New member
Hello everyone
<br />I have question for you. My dad diagnosed with myc. abscessus almost 4 years ago. I'm not sure if it's microbacterium or myco but I think myco cause most of the things you said matches with the the symptoms and threatments . My question is does this illness repeat itself? my dad used antibiotics for two years then doctor said it's enough and wanted to see my dad three times a year for check up. Since two years dad is just going for check up. General conditon of my dad is ok but sometimes a little bit of blood was coming but it stoped in one day. 3 weeks ago he bleeded again. He went to doctor. Doc took x-ray and tomography and he said illness repeated itself again (a littlle bit worse than before). He's going to talk to other doctors to decide about the threatment. Is this repeat normal? Is this illness serious or is it normal that it repeat itself and get better with antibiotics? We really don't know anything about this illness. I would be happy if you share your knowledge about this with me. Thanks in advance
 
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