Culturing MAC

JennifersHope · Aug 10, 2011

Well, I have no idea where else in the world to post this or get feed back, I posted it on my facebook but I took it down as I was not thinking clearly when I posted it, and I sent my family and friends into turmoil. My story is so confusing to everyone... I have been seen by a local pulmonogist the last few months, I really like this new doctor, she is young and on top of stuff. Every time I go she does a culture, she takes what I say seriously and tries to find solutions... Much like my old CF center did. We figured out that my oxygen level was pretty low on exertion, so I am now on oxygen, THe oxygen helped a great deal but I still am feeling yucky. We recently did a sputum culture just because I have been running a fever and am so exhausted.. and much to my surprise I am culturing MAC. My catscan looked better then it did right after I was intubated in November but I also have bronchiactisis. Not severe but more then I have ever had. I am going to see an infectious disease doctor but not for up till six weeks, They don't want to start treatment until they know what antibiotics will work, They said it is resistant as all get out and if you treat with just one or two antibiotics it will make things worse. Obviously I don't have an underlying diagnoses.. I am still waiting to go to National Jewish in Denver, I have to wait until I am cleared with Medicare, so that won't be until some time in February or March. I know my experience is different but if anyone is willing to share the process of what they went though with MAC I would greatly appreciate it. Thanks so much

JennifersHope · Aug 10, 2011

Well, I have no idea where else in the world to post this or get feed back, I posted it on my facebook but I took it down as I was not thinking clearly when I posted it, and I sent my family and friends into turmoil. My story is so confusing to everyone... I have been seen by a local pulmonogist the last few months, I really like this new doctor, she is young and on top of stuff. Every time I go she does a culture, she takes what I say seriously and tries to find solutions... Much like my old CF center did. We figured out that my oxygen level was pretty low on exertion, so I am now on oxygen, THe oxygen helped a great deal but I still am feeling yucky. We recently did a sputum culture just because I have been running a fever and am so exhausted.. and much to my surprise I am culturing MAC. My catscan looked better then it did right after I was intubated in November but I also have bronchiactisis. Not severe but more then I have ever had. I am going to see an infectious disease doctor but not for up till six weeks, They don't want to start treatment until they know what antibiotics will work, They said it is resistant as all get out and if you treat with just one or two antibiotics it will make things worse. Obviously I don't have an underlying diagnoses.. I am still waiting to go to National Jewish in Denver, I have to wait until I am cleared with Medicare, so that won't be until some time in February or March. I know my experience is different but if anyone is willing to share the process of what they went though with MAC I would greatly appreciate it. Thanks so much

JennifersHope · Aug 10, 2011

Well, I have no idea where else in the world to post this or get feed back, I posted it on my facebook but I took it down as I was not thinking clearly when I posted it, and I sent my family and friends into turmoil. My story is so confusing to everyone... I have been seen by a local pulmonogist the last few months, I really like this new doctor, she is young and on top of stuff. Every time I go she does a culture, she takes what I say seriously and tries to find solutions... Much like my old CF center did. We figured out that my oxygen level was pretty low on exertion, so I am now on oxygen, THe oxygen helped a great deal but I still am feeling yucky. We recently did a sputum culture just because I have been running a fever and am so exhausted.. and much to my surprise I am culturing MAC. My catscan looked better then it did right after I was intubated in November but I also have bronchiactisis. Not severe but more then I have ever had. I am going to see an infectious disease doctor but not for up till six weeks, They don't want to start treatment until they know what antibiotics will work, They said it is resistant as all get out and if you treat with just one or two antibiotics it will make things worse. Obviously I don't have an underlying diagnoses.. I am still waiting to go to National Jewish in Denver, I have to wait until I am cleared with Medicare, so that won't be until some time in February or March. I know my experience is different but if anyone is willing to share the process of what they went though with MAC I would greatly appreciate it. Thanks so much

hmw · Aug 10, 2011

I am so sorry you have yet more going on, Jennifer. I am not all that knowledgeable about MAC, just that it requires a really long period of treatment to get it under control, which must be very discouraging and overwhelming to you right now. :-( National Jewish is *the* place to go for this, though, so wishing you the best in getting an expert opinion on how to best tackle this there!!

On another note... and I really hope I don't offend you, but I only say this because I care: now that your Addison's is under control, please get the repeat sweat test. Honestly, this is just soooo much. Repeat the NPD if you need to as well... they were SO clear with me that the NPD is not infallible, no test is infallible. More reliable than a sweat test? OK, yes. Infallible, No. There is no other 'underlying dx' that fits you better than cf. I know that isn't what you want to hear from anyone, but I mean it with the best of intentions. (You know I wouldn't want to hear it about Shawn for the same reasons but if I HAVE to delve back into this world for the sake of his well-being I'll do it too as much as I loathe the idea.)

They will ONLY know if your second mutation is disease-causing based on the symptoms of every. single. person. who has it ~the experiences of EVERY person who has it 'count', not just the few who are on record already. If 'they' ~whoever that determines such things ~know that you culture this and have had so many other things suggestive of CF, they may well change their opinion on this mutation.

Wishing you the very best. <3

hmw · Aug 10, 2011

I am so sorry you have yet more going on, Jennifer. I am not all that knowledgeable about MAC, just that it requires a really long period of treatment to get it under control, which must be very discouraging and overwhelming to you right now. :-( National Jewish is *the* place to go for this, though, so wishing you the best in getting an expert opinion on how to best tackle this there!!

On another note... and I really hope I don't offend you, but I only say this because I care: now that your Addison's is under control, please get the repeat sweat test. Honestly, this is just soooo much. Repeat the NPD if you need to as well... they were SO clear with me that the NPD is not infallible, no test is infallible. More reliable than a sweat test? OK, yes. Infallible, No. There is no other 'underlying dx' that fits you better than cf. I know that isn't what you want to hear from anyone, but I mean it with the best of intentions. (You know I wouldn't want to hear it about Shawn for the same reasons but if I HAVE to delve back into this world for the sake of his well-being I'll do it too as much as I loathe the idea.)

They will ONLY know if your second mutation is disease-causing based on the symptoms of every. single. person. who has it ~the experiences of EVERY person who has it 'count', not just the few who are on record already. If 'they' ~whoever that determines such things ~know that you culture this and have had so many other things suggestive of CF, they may well change their opinion on this mutation.

Wishing you the very best. <3

hmw · Aug 10, 2011

I am so sorry you have yet more going on, Jennifer. I am not all that knowledgeable about MAC, just that it requires a really long period of treatment to get it under control, which must be very discouraging and overwhelming to you right now. :-( National Jewish is *the* place to go for this, though, so wishing you the best in getting an expert opinion on how to best tackle this there!!
 
 On another note... and I really hope I don't offend you, but I only say this because I care: now that your Addison's is under control, please get the repeat sweat test. Honestly, this is just soooo much. Repeat the NPD if you need to as well... they were SO clear with me that the NPD is not infallible, no test is infallible. More reliable than a sweat test? OK, yes. Infallible, No. There is no other 'underlying dx' that fits you better than cf. I know that isn't what you want to hear from anyone, but I mean it with the best of intentions. (You know I wouldn't want to hear it about Shawn for the same reasons but if I HAVE to delve back into this world for the sake of his well-being I'll do it too as much as I loathe the idea.)
 
 They will ONLY know if your second mutation is disease-causing based on the symptoms of every. single. person. who has it ~the experiences of EVERY person who has it 'count', not just the few who are on record already. If 'they' ~whoever that determines such things ~know that you culture this and have had so many other things suggestive of CF, they may well change their opinion on this mutation.
 
 Wishing you the very best. <3

Printer · Aug 10, 2011

When I was first dx I cultured MAC and have been treated two times for it since then. I was sent to the Infectious Disease Department (on two separate occasions) at Massachusetts General Hospital. On both visits the Doctor recommended that we leave the MAC alone. If its not bothering me, lets not bother it. Every sputum test that I have cultures MAC.

If treatment is required then you have to do it but if not, leave it alone.

Good luck,

Bill

Printer · Aug 10, 2011

When I was first dx I cultured MAC and have been treated two times for it since then. I was sent to the Infectious Disease Department (on two separate occasions) at Massachusetts General Hospital. On both visits the Doctor recommended that we leave the MAC alone. If its not bothering me, lets not bother it. Every sputum test that I have cultures MAC.

If treatment is required then you have to do it but if not, leave it alone.

Good luck,

Bill

Printer · Aug 10, 2011

When I was first dx I cultured MAC and have been treated two times for it since then. I was sent to the Infectious Disease Department (on two separate occasions) at Massachusetts General Hospital. On both visits the Doctor recommended that we leave the MAC alone. If its not bothering me, lets not bother it. Every sputum test that I have cultures MAC.
 
 If treatment is required then you have to do it but if not, leave it alone.
 
 Good luck,
 
 Bill

JennifersHope · Aug 10, 2011

Harriet, I totally hear what you are saying... Right now I am doing all the CF related treatments because I was put on them including airway clearance. I have had sweat tests since my Addison's was under control and I was positive at 67, and 69.

I was told the Nasal PD was definite. I can not go to National Jewish Hospital until my medicare kicks in in Feb. I have tired Medicaid denied me to go.. I have spoke at length with the CF doctor there. He has so nice, I am sure I will get a full work up once I get there.

Bill thanks for your advice, it would appear sicne the MAC is the only thing I am culturing, and the fact I am having night sweats, fevers, and my oxygen level is quite low with supplemental o2 that they will be treating it. I have been on a steady decline for a while.....

I know they told me it is a long drawn out and hard to treat thing. I will not let them not treat me for it at this point since I don't have a definitive diagnoses.

Harriet, I am so tired, so wrung out, so sick of having to ask my other doctor to help me get answers. I don't know what else to do. At least locally I am being treated, tests are being done.

The ENT told me about seven months ago that it was not upper airway, but that it was my lower lungs.. She is the one who got me set up with National Jewish.

I forget what center you went to to have the Nasal PD done, maybe I should contact them since we have gotten such conflicting reports. I was told UNC invented the Nasal PD testing and that what they say goes.

Some days I just don't have the energy to care....I am beyond frustrated because I hate wearing my o2, I feel like a freak..especially because we don't even know why, well I guess the MAC can do that, I don't know... I have a great career waiting for me and a whole life to live and I am stuck...

I was told to stop all my antibiotics because they are afraid the MAC is resistant to it.

Thanks for caring you guys, I am overwhelmed. tired and frustrated....The thought of doing antibiotics for six months to a year, just make me sick.....

JennifersHope · Aug 10, 2011

Harriet, I totally hear what you are saying... Right now I am doing all the CF related treatments because I was put on them including airway clearance. I have had sweat tests since my Addison's was under control and I was positive at 67, and 69.

I was told the Nasal PD was definite. I can not go to National Jewish Hospital until my medicare kicks in in Feb. I have tired Medicaid denied me to go.. I have spoke at length with the CF doctor there. He has so nice, I am sure I will get a full work up once I get there.

Bill thanks for your advice, it would appear sicne the MAC is the only thing I am culturing, and the fact I am having night sweats, fevers, and my oxygen level is quite low with supplemental o2 that they will be treating it. I have been on a steady decline for a while.....

I know they told me it is a long drawn out and hard to treat thing. I will not let them not treat me for it at this point since I don't have a definitive diagnoses.

Harriet, I am so tired, so wrung out, so sick of having to ask my other doctor to help me get answers. I don't know what else to do. At least locally I am being treated, tests are being done.

The ENT told me about seven months ago that it was not upper airway, but that it was my lower lungs.. She is the one who got me set up with National Jewish.

I forget what center you went to to have the Nasal PD done, maybe I should contact them since we have gotten such conflicting reports. I was told UNC invented the Nasal PD testing and that what they say goes.

Some days I just don't have the energy to care....I am beyond frustrated because I hate wearing my o2, I feel like a freak..especially because we don't even know why, well I guess the MAC can do that, I don't know... I have a great career waiting for me and a whole life to live and I am stuck...

I was told to stop all my antibiotics because they are afraid the MAC is resistant to it.

Thanks for caring you guys, I am overwhelmed. tired and frustrated....The thought of doing antibiotics for six months to a year, just make me sick.....

JennifersHope · Aug 10, 2011

Harriet, I totally hear what you are saying... Right now I am doing all the CF related treatments because I was put on them including airway clearance. I have had sweat tests since my Addison's was under control and I was positive at 67, and 69.
 
 I was told the Nasal PD was definite. I can not go to National Jewish Hospital until my medicare kicks in in Feb. I have tired Medicaid denied me to go.. I have spoke at length with the CF doctor there. He has so nice, I am sure I will get a full work up once I get there.
 
 Bill thanks for your advice, it would appear sicne the MAC is the only thing I am culturing, and the fact I am having night sweats, fevers, and my oxygen level is quite low with supplemental o2 that they will be treating it. I have been on a steady decline for a while.....
 
 I know they told me it is a long drawn out and hard to treat thing. I will not let them not treat me for it at this point since I don't have a definitive diagnoses.
 
 Harriet, I am so tired, so wrung out, so sick of having to ask my other doctor to help me get answers. I don't know what else to do. At least locally I am being treated, tests are being done.
 
 The ENT told me about seven months ago that it was not upper airway, but that it was my lower lungs.. She is the one who got me set up with National Jewish.
 
 I forget what center you went to to have the Nasal PD done, maybe I should contact them since we have gotten such conflicting reports. I was told UNC invented the Nasal PD testing and that what they say goes.
 
 Some days I just don't have the energy to care....I am beyond frustrated because I hate wearing my o2, I feel like a freak..especially because we don't even know why, well I guess the MAC can do that, I don't know... I have a great career waiting for me and a whole life to live and I am stuck...
 
 I was told to stop all my antibiotics because they are afraid the MAC is resistant to it.
 
 Thanks for caring you guys, I am overwhelmed. tired and frustrated....The thought of doing antibiotics for six months to a year, just make me sick.....

embraun · Aug 11, 2011

Jennifer,
First of all, I'm glad you're going to National Jewish. I spent two weeks there, and it changed my life. I don't have CF, but I have had bronchiectasis from an early age, and had two lobectomies. Until National Jewish, the reason why i was so sick was a mystery. Long story short, they were instrumental in getting a definitive diagnosis, which turned out to be primary ciliary dyskinesia. At least now I know better how to take care of myself. I did have MAC about 10 years ago, took two different meds for a year, and it was eradicated. Hasn't returned. I do wish you the best. If anyone can help you deal with this, it's National Jewish. Best of luck.
Liz

embraun · Aug 11, 2011

Jennifer,
First of all, I'm glad you're going to National Jewish. I spent two weeks there, and it changed my life. I don't have CF, but I have had bronchiectasis from an early age, and had two lobectomies. Until National Jewish, the reason why i was so sick was a mystery. Long story short, they were instrumental in getting a definitive diagnosis, which turned out to be primary ciliary dyskinesia. At least now I know better how to take care of myself. I did have MAC about 10 years ago, took two different meds for a year, and it was eradicated. Hasn't returned. I do wish you the best. If anyone can help you deal with this, it's National Jewish. Best of luck.
Liz

embraun · Aug 11, 2011

Jennifer,
 First of all, I'm glad you're going to National Jewish. I spent two weeks there, and it changed my life. I don't have CF, but I have had bronchiectasis from an early age, and had two lobectomies. Until National Jewish, the reason why i was so sick was a mystery. Long story short, they were instrumental in getting a definitive diagnosis, which turned out to be primary ciliary dyskinesia. At least now I know better how to take care of myself. I did have MAC about 10 years ago, took two different meds for a year, and it was eradicated. Hasn't returned. I do wish you the best. If anyone can help you deal with this, it's National Jewish. Best of luck.
 Liz

Deb · Aug 11, 2011

As others have said, National Jewish is the place to go. Since you are not able to physically go there until February i would suggest requesting vials and sending them sputum cultures. They can confirm the MAC and begin the process of susceptibility to meds. They may even be able to consult with your local doc and get you started on the treatment before February. It's worth trying.
I send sputum sample there routinely. This link will help in getting info about requesting a sputum mailer.
http://www.nationaljewish.org/about/contact/mycobacterial-consult/

Deb · Aug 11, 2011

As others have said, National Jewish is the place to go. Since you are not able to physically go there until February i would suggest requesting vials and sending them sputum cultures. They can confirm the MAC and begin the process of susceptibility to meds. They may even be able to consult with your local doc and get you started on the treatment before February. It's worth trying.
I send sputum sample there routinely. This link will help in getting info about requesting a sputum mailer.
http://www.nationaljewish.org/about/contact/mycobacterial-consult/

Deb · Aug 11, 2011

As others have said, National Jewish is the place to go. Since you are not able to physically go there until February i would suggest requesting vials and sending them sputum cultures. They can confirm the MAC and begin the process of susceptibility to meds. They may even be able to consult with your local doc and get you started on the treatment before February. It's worth trying.
 I send sputum sample there routinely. This link will help in getting info about requesting a sputum mailer.
 http://www.nationaljewish.org/about/contact/mycobacterial-consult/

maryiris · Aug 11, 2011

I am currently 51 years old. My entire life I was treated for severe asthma. Dr. Clinton Sharp in Louisiana just threw one antibiotic after another at me for years - to no avail. I moved to the Washington DC area and ended up seeing a pulmonologist, Dr. Byron Cooper. Dr. Cooper realized right away something else was wrong and he spent a lot of time and testing to find it. Eventually we did an invasive lung biopsy and found MAC. Coop put me on antibiotics (a HANDFUL EVERY DAY) for 18 months. It hasn't shown up again. After I continued to have problems. Sweat Test was borderline. Genetic testing showed one CF gene. Coop kept digging and reading up - finally sent me to see a CF specialist who sent the blood to a special lab in California that tests for over 1000 strains. They found the other CF mutation. I have been treated for CF since then. I was officially diagnosed with CF at age 40.

The antibiotics for the MAC didn't cause alot of problems - wasn't so bad at all.

Basically Dr. Byron Cooper (my hero who just kept digging and digging) and Dr. Peter Levit (my CF god) have saved my life. I now enjoy my 16 month old grandson and plan to be around to spoil him for quite some time <img src="i/expressions/face-icon-small-smile.gif" border="0">

maryiris · Aug 11, 2011

I am currently 51 years old. My entire life I was treated for severe asthma. Dr. Clinton Sharp in Louisiana just threw one antibiotic after another at me for years - to no avail. I moved to the Washington DC area and ended up seeing a pulmonologist, Dr. Byron Cooper. Dr. Cooper realized right away something else was wrong and he spent a lot of time and testing to find it. Eventually we did an invasive lung biopsy and found MAC. Coop put me on antibiotics (a HANDFUL EVERY DAY) for 18 months. It hasn't shown up again. After I continued to have problems. Sweat Test was borderline. Genetic testing showed one CF gene. Coop kept digging and reading up - finally sent me to see a CF specialist who sent the blood to a special lab in California that tests for over 1000 strains. They found the other CF mutation. I have been treated for CF since then. I was officially diagnosed with CF at age 40.

The antibiotics for the MAC didn't cause alot of problems - wasn't so bad at all.

Basically Dr. Byron Cooper (my hero who just kept digging and digging) and Dr. Peter Levit (my CF god) have saved my life. I now enjoy my 16 month old grandson and plan to be around to spoil him for quite some time <img src="i/expressions/face-icon-small-smile.gif" border="0">

Culturing MAC

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