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Mycobacterium Avium Intracellulare also known as MAI
- Thread starter Murgie
- Start date
theLostMiler
New member
I know of one person on another cf site, she ended up having a lobectomy or partial lobectomy and is still doing good.
theLostMiler
New member
I know of one person on another cf site, she ended up having a lobectomy or partial lobectomy and is still doing good.
theLostMiler
New member
I know of one person on another cf site, she ended up having a lobectomy or partial lobectomy and is still doing good.
theLostMiler
New member
It was on cysticlife.org and I think her name was April, if you make an account you can search for April and she is the one wearing all black and I think a hat...
From there you can PM her and she can probably give you her experience.
Also on there if you search the topics for "mycobacterium" or various words related to this stuff, you should be able to find one of her questions and or comments on other questions where she discusses it a little bit.
I am sorry i am not much more help, if you do get a little lost, I can probably find her for you and see if she is on here or something along those lines.
I am sorry to hear you are going through this, I do know that the MAI isn't as common, which you've obviously discovered, but she is one person I know who has/had culture(d) it.
You can also PM me, I want to help you get as much info as you can <img src="i/expressions/face-icon-small-smile.gif" border="0">
From there you can PM her and she can probably give you her experience.
Also on there if you search the topics for "mycobacterium" or various words related to this stuff, you should be able to find one of her questions and or comments on other questions where she discusses it a little bit.
I am sorry i am not much more help, if you do get a little lost, I can probably find her for you and see if she is on here or something along those lines.
I am sorry to hear you are going through this, I do know that the MAI isn't as common, which you've obviously discovered, but she is one person I know who has/had culture(d) it.
You can also PM me, I want to help you get as much info as you can <img src="i/expressions/face-icon-small-smile.gif" border="0">
theLostMiler
New member
It was on cysticlife.org and I think her name was April, if you make an account you can search for April and she is the one wearing all black and I think a hat...
From there you can PM her and she can probably give you her experience.
Also on there if you search the topics for "mycobacterium" or various words related to this stuff, you should be able to find one of her questions and or comments on other questions where she discusses it a little bit.
I am sorry i am not much more help, if you do get a little lost, I can probably find her for you and see if she is on here or something along those lines.
I am sorry to hear you are going through this, I do know that the MAI isn't as common, which you've obviously discovered, but she is one person I know who has/had culture(d) it.
You can also PM me, I want to help you get as much info as you can <img src="i/expressions/face-icon-small-smile.gif" border="0">
From there you can PM her and she can probably give you her experience.
Also on there if you search the topics for "mycobacterium" or various words related to this stuff, you should be able to find one of her questions and or comments on other questions where she discusses it a little bit.
I am sorry i am not much more help, if you do get a little lost, I can probably find her for you and see if she is on here or something along those lines.
I am sorry to hear you are going through this, I do know that the MAI isn't as common, which you've obviously discovered, but she is one person I know who has/had culture(d) it.
You can also PM me, I want to help you get as much info as you can <img src="i/expressions/face-icon-small-smile.gif" border="0">
theLostMiler
New member
It was on cysticlife.org and I think her name was April, if you make an account you can search for April and she is the one wearing all black and I think a hat...
<br />
<br />From there you can PM her and she can probably give you her experience.
<br />
<br />Also on there if you search the topics for "mycobacterium" or various words related to this stuff, you should be able to find one of her questions and or comments on other questions where she discusses it a little bit.
<br />
<br />I am sorry i am not much more help, if you do get a little lost, I can probably find her for you and see if she is on here or something along those lines.
<br />
<br />I am sorry to hear you are going through this, I do know that the MAI isn't as common, which you've obviously discovered, but she is one person I know who has/had culture(d) it.
<br />
<br />You can also PM me, I want to help you get as much info as you can <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />From there you can PM her and she can probably give you her experience.
<br />
<br />Also on there if you search the topics for "mycobacterium" or various words related to this stuff, you should be able to find one of her questions and or comments on other questions where she discusses it a little bit.
<br />
<br />I am sorry i am not much more help, if you do get a little lost, I can probably find her for you and see if she is on here or something along those lines.
<br />
<br />I am sorry to hear you are going through this, I do know that the MAI isn't as common, which you've obviously discovered, but she is one person I know who has/had culture(d) it.
<br />
<br />You can also PM me, I want to help you get as much info as you can <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the info on the other CF blog site, it took me awhile but I am now a member and have posted my question there. It seems that others have experience with MAC, or some version of this MAI diagnosis of Sams, but I am not really getting much else.
I am going to call the CF clinic tomorrow, as I am very worried about my son, and he is also worried that he feels so bad for so long.
We had a mini tune up in march, but his fatigue level is great and his blood sugars are off the charts.
thanks again for your input
I am going to call the CF clinic tomorrow, as I am very worried about my son, and he is also worried that he feels so bad for so long.
We had a mini tune up in march, but his fatigue level is great and his blood sugars are off the charts.
thanks again for your input
Thanks for the info on the other CF blog site, it took me awhile but I am now a member and have posted my question there. It seems that others have experience with MAC, or some version of this MAI diagnosis of Sams, but I am not really getting much else.
I am going to call the CF clinic tomorrow, as I am very worried about my son, and he is also worried that he feels so bad for so long.
We had a mini tune up in march, but his fatigue level is great and his blood sugars are off the charts.
thanks again for your input
I am going to call the CF clinic tomorrow, as I am very worried about my son, and he is also worried that he feels so bad for so long.
We had a mini tune up in march, but his fatigue level is great and his blood sugars are off the charts.
thanks again for your input
<p>Thanks for the info on the other CF blog site, it took me awhile but I am now a member and have posted my question there. It seems that others have experience with MAC, or some version of this MAI diagnosis of Sams, but I am not really getting much else.
<p>I am going to call the CF clinic tomorrow, as I am very worried about my son, and he is also worried that he feels so bad for so long.
<p>We had a mini tune up in march, but his fatigue level is great and his blood sugars are off the charts.
<p>thanks again for your input
<p>I am going to call the CF clinic tomorrow, as I am very worried about my son, and he is also worried that he feels so bad for so long.
<p>We had a mini tune up in march, but his fatigue level is great and his blood sugars are off the charts.
<p>thanks again for your input
W
windex125
Guest
I Murgie this is my first visit to this thread, I usually only read the adult section, but this past Sat a friend of my son's passed from CF she was only 20 and I was looking around at other area's and saw yr. subject name. I have CF I am 56 female I started cutluring the same MAC (Avium) bug from 99 or 2000? Very resistant to just abt every medication, we did a round of a special cocktail years ago. There is another women on the adult section Belache I may have spelt that wrong but she also has her own blog. She also cultures MAC and is very informative abt this particular bacteria. If you have googled it don't get too upset, I did alot of reading abt it years ago then I stopped. I was driving myself nuts abt it. I know it is said to bascially come from water and dirt I was a big gardenner for years who knew? I also have a non CF freind abt my age who also got a terrible lung infection only to find out she was growing MAC she was treated for 12mts with a special cocktail as well. Pat56/CF
W
windex125
Guest
I Murgie this is my first visit to this thread, I usually only read the adult section, but this past Sat a friend of my son's passed from CF she was only 20 and I was looking around at other area's and saw yr. subject name. I have CF I am 56 female I started cutluring the same MAC (Avium) bug from 99 or 2000? Very resistant to just abt every medication, we did a round of a special cocktail years ago. There is another women on the adult section Belache I may have spelt that wrong but she also has her own blog. She also cultures MAC and is very informative abt this particular bacteria. If you have googled it don't get too upset, I did alot of reading abt it years ago then I stopped. I was driving myself nuts abt it. I know it is said to bascially come from water and dirt I was a big gardenner for years who knew? I also have a non CF freind abt my age who also got a terrible lung infection only to find out she was growing MAC she was treated for 12mts with a special cocktail as well. Pat56/CF
W
windex125
Guest
I Murgie this is my first visit to this thread, I usually only read the adult section, but this past Sat a friend of my son's passed from CF she was only 20 and I was looking around at other area's and saw yr. subject name. I have CF I am 56 female I started cutluring the same MAC (Avium) bug from 99 or 2000? Very resistant to just abt every medication, we did a round of a special cocktail years ago. There is another women on the adult section Belache I may have spelt that wrong but she also has her own blog. She also cultures MAC and is very informative abt this particular bacteria. If you have googled it don't get too upset, I did alot of reading abt it years ago then I stopped. I was driving myself nuts abt it. I know it is said to bascially come from water and dirt I was a big gardenner for years who knew? I also have a non CF freind abt my age who also got a terrible lung infection only to find out she was growing MAC she was treated for 12mts with a special cocktail as well. Pat56/CF
B
bookworm
Guest
Hi. You may want to look at the site for non-tubercular mycobacterium, which includes information on quite a few different mycobacterium, including MAI. There is lots of support information there as well as a discussion list. The adress is: http://ntminfo.org.
Please keep in mind that the majority of posters on the discussion board are older women who also have other genetic factors that may pre-dispose them to MAC. So staying positive is very helpful. I believe there are some younger men on the board who live quite well - without surgery - staying very active - including rock climbing. I believe this site was created by someone who went to the National Jewish Hospital in Colorado for treatment. This is the top centre for treating NTMs.
Please keep in mind that the majority of posters on the discussion board are older women who also have other genetic factors that may pre-dispose them to MAC. So staying positive is very helpful. I believe there are some younger men on the board who live quite well - without surgery - staying very active - including rock climbing. I believe this site was created by someone who went to the National Jewish Hospital in Colorado for treatment. This is the top centre for treating NTMs.
B
bookworm
Guest
Hi. You may want to look at the site for non-tubercular mycobacterium, which includes information on quite a few different mycobacterium, including MAI. There is lots of support information there as well as a discussion list. The adress is: http://ntminfo.org.
Please keep in mind that the majority of posters on the discussion board are older women who also have other genetic factors that may pre-dispose them to MAC. So staying positive is very helpful. I believe there are some younger men on the board who live quite well - without surgery - staying very active - including rock climbing. I believe this site was created by someone who went to the National Jewish Hospital in Colorado for treatment. This is the top centre for treating NTMs.
Please keep in mind that the majority of posters on the discussion board are older women who also have other genetic factors that may pre-dispose them to MAC. So staying positive is very helpful. I believe there are some younger men on the board who live quite well - without surgery - staying very active - including rock climbing. I believe this site was created by someone who went to the National Jewish Hospital in Colorado for treatment. This is the top centre for treating NTMs.