My visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
My visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
I was diagnosed in 2/20 and have not been treated with any meds, I just do airway clearance 2x daily. I see Dr Huitt at NJ and Dr Daniels at UNC. My cultures have showed Avium, Abscessus and Intracellulare. My colony count has been as low as 5 and as high as 400. I think several factors are taken into consideration before having treatment such as your CT scan, symptoms, and reasons for the Mac infection/bronchiectasis. Also my cultures don't show the same bacteria each time which is a good thing, because I isolate different subspecies of Mac which implies that I am only transiently colonized with NTM. It is really important to see a DR who deals with NTM and Bronchiectasis and who uses a lab that can identify the exact bacteria and number of colonies. Without a good lab I may have been unnecessarily treated. I would definitely hold off on antibiotics until you know exactly what you are dealing with. My NJ DR thinks my Mac is probably caused by refulx so I have to work on getting that under control. I use to go to Duke in Raleigh but they do NOT have a good lab and cannot tell you the bacteria or the colony count. I would go to National Jewish and get a second opinion. Best of luck.
My visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
Also, if you live in the Raleigh NC area I highly recommend Dr Mary Leigh Ann Daniels. She has a very through understanding of MAC and would only treat you if she thought it was necessary.
My visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
I would like to point out that any doctor or clinic can make arrangements to have your cultures sent to the labs at NJH for culture, sensitivity and colony count. Each must be specified in the order. My provider in Minnesota has the initial AFB test run at the department of health, then it is sent to NJH. My daughter has a different provider and they do the same.
Sue
Also, if you live in the Raleigh NC area I highly recommend Dr Mary Leigh Ann Daniels. She has a very through understanding of MAC and would only treat you if she thought it was necessary.
Thank you for responding to my post. I started this journey with Mac in 2018. I have nodular bronchiectasis and my sputum cultures are positive for avium-intracellulare . I have my labs done at lab corp in asheville . Currently my symptoms are getting worst and my ct showing mac in both lungs.
My Mac infection is due to structural damage to my lungs due radiation. I had stage 4 neck cancer. My issues started after my treatments. I am 5 years out.
My symptoms are why treatment is recommended. I will discuss with my doctor to send my labs to njh to check for colony count. Don’t know if lab corp could do it. They did dna test to identify and susceptibility. Maybe they can do colony count. This is difficult but after my cancer i have to do everything i can to have quality of life. I know the risk and also that it may not work. Reinfection for my type is high. Can’t worry about that now. I place everything in God’s hand and pray that it works.
I appreciate everyone thoughts. Its good to hear what others have gone through. Will keep you updated. Thank you again. Miriam
Thank you for responding to my post. I started this journey with Mac in 2018. I have nodular bronchiectasis and my sputum cultures are positive for avium-intracellulare . I have my labs done at lab corp in asheville . Currently my symptoms are getting worst and my ct showing mac in both lungs.
My Mac infection is due to structural damage to my lungs due radiation. I had stage 4 neck cancer. My issues started after my treatments. I am 5 years out.
My symptoms are why treatment is recommended. I will discuss with my doctor to send my labs to njh to check for colony count. Don’t know if lab corp could do it. They did dna test to identify and susceptibility. Maybe they can do colony count. This is difficult but after my cancer i have to do everything i can to have quality of life. I know the risk and also that it may not work. Reinfection for my type is high. Can’t worry about that now. I place everything in God’s hand and pray that it works.
I appreciate everyone thoughts. Its good to hear what others have gone through. Will keep you updated. Thank you again. Miriam
I am so sorry you are having a difficult time. My sister is just finishing her treatment for Head and Neck/Esophageal cancer and they saw MAC on the PET scan. I wish you the best and I will be praying for you!
I am so sorry you are having a difficult time. My sister is just finishing her treatment for Head and Neck/Esophageal cancer and they saw MAC on the PET scan. I wish you the best and I will be praying for you!
I would like to point out that any doctor or clinic can make arrangements to have your cultures sent to the labs at NJH for culture, sensitivity and colony count. Each must be specified in the order. My provider in Minnesota has the initial AFB test run at the department of health, then it is sent to NJH. My daughter has a different provider and they do the same.
Sue
My visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
Hi Miriam, I moved this discussion to similar discussion that @ritapearl started a few months earlier where she asked "I am beginning the “big three” therapy what should I expect?" In addition to the responses you've already received from fellow members, you may appreciate going back through the earlier response too, starting here: https://connect.mayoclinic.org/discussion/starting-mac-drugs/
What questions, if any, are still weighing on your mind?
Connect
Connect
Like
Helpful
Hug
I am on month 4 and haven’t had any issues at all, good luck hope you fair as good as I have
-
Like -
Helpful -
Hug
1 ReactionMy visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
I was diagnosed in 2/20 and have not been treated with any meds, I just do airway clearance 2x daily. I see Dr Huitt at NJ and Dr Daniels at UNC. My cultures have showed Avium, Abscessus and Intracellulare. My colony count has been as low as 5 and as high as 400. I think several factors are taken into consideration before having treatment such as your CT scan, symptoms, and reasons for the Mac infection/bronchiectasis. Also my cultures don't show the same bacteria each time which is a good thing, because I isolate different subspecies of Mac which implies that I am only transiently colonized with NTM. It is really important to see a DR who deals with NTM and Bronchiectasis and who uses a lab that can identify the exact bacteria and number of colonies. Without a good lab I may have been unnecessarily treated. I would definitely hold off on antibiotics until you know exactly what you are dealing with. My NJ DR thinks my Mac is probably caused by refulx so I have to work on getting that under control. I use to go to Duke in Raleigh but they do NOT have a good lab and cannot tell you the bacteria or the colony count. I would go to National Jewish and get a second opinion. Best of luck.
-
Like -
Helpful -
Hug
1 ReactionAlso, if you live in the Raleigh NC area I highly recommend Dr Mary Leigh Ann Daniels. She has a very through understanding of MAC and would only treat you if she thought it was necessary.
I would like to point out that any doctor or clinic can make arrangements to have your cultures sent to the labs at NJH for culture, sensitivity and colony count. Each must be specified in the order. My provider in Minnesota has the initial AFB test run at the department of health, then it is sent to NJH. My daughter has a different provider and they do the same.
Sue
-
Like -
Helpful -
Hug
2 ReactionsThank you for responding to my post. I started this journey with Mac in 2018. I have nodular bronchiectasis and my sputum cultures are positive for avium-intracellulare . I have my labs done at lab corp in asheville . Currently my symptoms are getting worst and my ct showing mac in both lungs.
My Mac infection is due to structural damage to my lungs due radiation. I had stage 4 neck cancer. My issues started after my treatments. I am 5 years out.
My symptoms are why treatment is recommended. I will discuss with my doctor to send my labs to njh to check for colony count. Don’t know if lab corp could do it. They did dna test to identify and susceptibility. Maybe they can do colony count. This is difficult but after my cancer i have to do everything i can to have quality of life. I know the risk and also that it may not work. Reinfection for my type is high. Can’t worry about that now. I place everything in God’s hand and pray that it works.
I appreciate everyone thoughts. Its good to hear what others have gone through. Will keep you updated. Thank you again. Miriam
-
Like -
Helpful -
Hug
4 ReactionsI am so sorry you are having a difficult time. My sister is just finishing her treatment for Head and Neck/Esophageal cancer and they saw MAC on the PET scan. I wish you the best and I will be praying for you!
So sorry to hear about your sister. Its a difficult time for her. Will pray for her. Thank you for your prayers.
that is good to know. I am going to ask to have the next one sent to njh.
Hi Miriam, I moved this discussion to similar discussion that @ritapearl started a few months earlier where she asked "I am beginning the “big three” therapy what should I expect?" In addition to the responses you've already received from fellow members, you may appreciate going back through the earlier response too, starting here: https://connect.mayoclinic.org/discussion/starting-mac-drugs/
What questions, if any, are still weighing on your mind?