Good morning. I had my ct yesterday and the got the report. I am waiting for my pulmonologist to call. (Waiting is a pain). We were looking at a nodule in the right upper lobe. It has now grown it did not disappear like my doctor thought would happen. With an additional new one. Also i have increasing nodular opacities in the anterior right upper, inferior right middle. Multiple scattered tree in bud type nodular opacities within the periphery of both lungs which some have increased and some stable in the last 3 mo. Radiologist says is likely atypical MAI. So since my positive cultures have come during same time period. Need to wait for dr but i feel that this getting worst and having physical symptoms. Taking all of this to duke on the 10th. This infection cannot be good for my lungs. I had to decide if to treat or not and wait. Unless doctor tells me otherwise i think i will treat. Why would i wait to let it get worst. Have any of you been in this situation. Please would like to hear from you. Thanks miriam
Yes, Miriam, the waiting is definitely a pain. My issue was more clear-cut - I was very ill by the time MAC was diagnosed, so treating was not optional.
Given the improvement I got, in spite of the side effects, I would make the same decision again if my MAC flares seriously again.
You will be able to get lots of suggestions here for managing the medications.
Sue
Sue, it was helpful to read about your experience taking the big three antibiotics for MAC; thank you. I like the idea of eating small quantities of quality food throughout the day. When I read about the side effects I freaked out. I had a hard time starting rifampin tonight because of what I'm reading. Does life ever go back to normal or am I in for a lifetime of managing this disease? I think my pulmonologist stated the most optimistic outcome to get me on board with treatment. I thought it needed to be eliminated but after doing lots of reading it seems "subdued" is all I can hope for.
Oh yes, I was really scared to start the antibiotics, and the side effects, for me, were no walk in the park. But I persisted for 18 months, and knocked the infection way down but not out.
During my treatment, I learned on Mayo Connect about using 7% saline in conjunction with airway clearance. In December 2019, in consultation with my pulmonologist, ID doc, and NJH, I decided the side effects were no longer worth it for me. We did a trial of stopping the antibiotics, but continuing airway clearance & 7% saline.
Two years later here is my report: No observable reinfection, either by CT or symptoms. Only ONE exacerbation, managed with increased nebs and airway clearance for a month and a short course of steroids to calm my lungs.
Here are the ongoing precautions I take to keep from getting sick:
Twice a year visits with pulmonologist - sputum culture at one, CT at other to make sure I'm stable.
Super caution about exposure to respiratory illness. (If my kids/grands have any kinds of sniffles or cough they mask when with us - their idea.)
Keep my neb/breathing equipment clean.
Stay away from hot tubs.
Keep my water heater super hot (138F) to minimize MAC growth and take short showers.
Drink & cook with 2 micron filtered water at home. Drink spring water when not home.
Run HEPA filters in our homes.
Stay indoors or mask when dirt is blowing around, and when gardening in dry soil. Pay someone else to handle digging and mulch in my gardens. Change clothes and shower after gardening. (Pretty sure I got MAC from the dry Texas dirt where we had feral chickens in the yard.)
That's it - others may exercise more precautions, but this is working for me. I figure the extras - changing filters, equipment cleaning, masks, are a pretty minimal effort compared to dealing with the meds.
You will find a way to accommodate, and it will just be part of your routine...
Sue
Oh yes, I was really scared to start the antibiotics, and the side effects, for me, were no walk in the park. But I persisted for 18 months, and knocked the infection way down but not out.
During my treatment, I learned on Mayo Connect about using 7% saline in conjunction with airway clearance. In December 2019, in consultation with my pulmonologist, ID doc, and NJH, I decided the side effects were no longer worth it for me. We did a trial of stopping the antibiotics, but continuing airway clearance & 7% saline.
Two years later here is my report: No observable reinfection, either by CT or symptoms. Only ONE exacerbation, managed with increased nebs and airway clearance for a month and a short course of steroids to calm my lungs.
Here are the ongoing precautions I take to keep from getting sick:
Twice a year visits with pulmonologist - sputum culture at one, CT at other to make sure I'm stable.
Super caution about exposure to respiratory illness. (If my kids/grands have any kinds of sniffles or cough they mask when with us - their idea.)
Keep my neb/breathing equipment clean.
Stay away from hot tubs.
Keep my water heater super hot (138F) to minimize MAC growth and take short showers.
Drink & cook with 2 micron filtered water at home. Drink spring water when not home.
Run HEPA filters in our homes.
Stay indoors or mask when dirt is blowing around, and when gardening in dry soil. Pay someone else to handle digging and mulch in my gardens. Change clothes and shower after gardening. (Pretty sure I got MAC from the dry Texas dirt where we had feral chickens in the yard.)
That's it - others may exercise more precautions, but this is working for me. I figure the extras - changing filters, equipment cleaning, masks, are a pretty minimal effort compared to dealing with the meds.
You will find a way to accommodate, and it will just be part of your routine...
Sue
This is helpful, Sue. I think I got MAC from gardening, too. I have more exposure to soil and its contents than most. My doc hasn't suggested any lifestyle changes, air filters, or shower/water consumption changes. I keep reading about nebulizers and I have no idea how to start with one. Is there more information about them somewhere? Thank you for your help here. I'm so glad I found this site. I hope you continue to feel well.
Good morning. I had my ct yesterday and the got the report. I am waiting for my pulmonologist to call. (Waiting is a pain). We were looking at a nodule in the right upper lobe. It has now grown it did not disappear like my doctor thought would happen. With an additional new one. Also i have increasing nodular opacities in the anterior right upper, inferior right middle. Multiple scattered tree in bud type nodular opacities within the periphery of both lungs which some have increased and some stable in the last 3 mo. Radiologist says is likely atypical MAI. So since my positive cultures have come during same time period. Need to wait for dr but i feel that this getting worst and having physical symptoms. Taking all of this to duke on the 10th. This infection cannot be good for my lungs. I had to decide if to treat or not and wait. Unless doctor tells me otherwise i think i will treat. Why would i wait to let it get worst. Have any of you been in this situation. Please would like to hear from you. Thanks miriam
Miriam, this sounds like a scary time. I hope you have a plan for treatment and start to feel confident about the path forward very soon. My best to you.
This is helpful, Sue. I think I got MAC from gardening, too. I have more exposure to soil and its contents than most. My doc hasn't suggested any lifestyle changes, air filters, or shower/water consumption changes. I keep reading about nebulizers and I have no idea how to start with one. Is there more information about them somewhere? Thank you for your help here. I'm so glad I found this site. I hope you continue to feel well.
If you have a Facebook account you could join the group Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More. Kelly Kats has created many guides for people like us who are trying to help ourselves with everyday Airway Clearance and Precautions. I have learned so much since joining.
So, it took me almost 2 years to start big 3. I have bronchiectasis and Mac. Md suggested nebulizing with 3% saline 2x daily first. What with Covid and all, and self study. I tried . No changes, so then took some time to improve on gerd symptoms (diet, time changes, sleeping on incline). Got an endoscopy. Still haven’t gotten swallow study(Covid scheduling difficulties). My ID dr. Came back from maternity leave, so I started 2 weeks ago. Rifampin before breakfast with a cracker and full glass of water . Ethambutol and azithromycin before bed with a cracker and a little water. M-w-f. So far ok. A little stomach issues and vivid dreams on nights I take medicine. Labs to check thyroid (I’m on synthroid) every 2 months. Eye checks and aware of any hearing changes. Thanks to everyone for getting me to this point. Oh and my ID changed her mind about 7% saline. So 7% nebs now! Yeah.
If you have a Facebook account you could join the group Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More. Kelly Kats has created many guides for people like us who are trying to help ourselves with everyday Airway Clearance and Precautions. I have learned so much since joining.
So, it took me almost 2 years to start big 3. I have bronchiectasis and Mac. Md suggested nebulizing with 3% saline 2x daily first. What with Covid and all, and self study. I tried . No changes, so then took some time to improve on gerd symptoms (diet, time changes, sleeping on incline). Got an endoscopy. Still haven’t gotten swallow study(Covid scheduling difficulties). My ID dr. Came back from maternity leave, so I started 2 weeks ago. Rifampin before breakfast with a cracker and full glass of water . Ethambutol and azithromycin before bed with a cracker and a little water. M-w-f. So far ok. A little stomach issues and vivid dreams on nights I take medicine. Labs to check thyroid (I’m on synthroid) every 2 months. Eye checks and aware of any hearing changes. Thanks to everyone for getting me to this point. Oh and my ID changed her mind about 7% saline. So 7% nebs now! Yeah.
If you have a Facebook account you could join the group Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More. Kelly Kats has created many guides for people like us who are trying to help ourselves with everyday Airway Clearance and Precautions. I have learned so much since joining.
I also learned a lot from that site, but got off the site because of some troubling things. KellyKats makes some over the too summaries of research articles For example!; "Gluten is a opioid.." When you read the research that she sites that broad statement is incorrect. Other concerns; How can someone with as many serious illnesses as she has spend so much time responding to posts? I know how much time it takes me and I have fewer ailments than she claims to have... Everyone on the site has a user name but their real name is also revealed for all to see. Only name revealed fir her is KellyKats and no profile picture so no way to check if this is a real person.
There are some very sick people in the group and I miss communicating with them , but got off the group because if the unknown about KellyKats that I was unable to verify...
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Yes, Miriam, the waiting is definitely a pain. My issue was more clear-cut - I was very ill by the time MAC was diagnosed, so treating was not optional.
Given the improvement I got, in spite of the side effects, I would make the same decision again if my MAC flares seriously again.
You will be able to get lots of suggestions here for managing the medications.
Sue
Oh yes, I was really scared to start the antibiotics, and the side effects, for me, were no walk in the park. But I persisted for 18 months, and knocked the infection way down but not out.
During my treatment, I learned on Mayo Connect about using 7% saline in conjunction with airway clearance. In December 2019, in consultation with my pulmonologist, ID doc, and NJH, I decided the side effects were no longer worth it for me. We did a trial of stopping the antibiotics, but continuing airway clearance & 7% saline.
Two years later here is my report: No observable reinfection, either by CT or symptoms. Only ONE exacerbation, managed with increased nebs and airway clearance for a month and a short course of steroids to calm my lungs.
Here are the ongoing precautions I take to keep from getting sick:
Twice a year visits with pulmonologist - sputum culture at one, CT at other to make sure I'm stable.
Super caution about exposure to respiratory illness. (If my kids/grands have any kinds of sniffles or cough they mask when with us - their idea.)
Keep my neb/breathing equipment clean.
Stay away from hot tubs.
Keep my water heater super hot (138F) to minimize MAC growth and take short showers.
Drink & cook with 2 micron filtered water at home. Drink spring water when not home.
Run HEPA filters in our homes.
Stay indoors or mask when dirt is blowing around, and when gardening in dry soil. Pay someone else to handle digging and mulch in my gardens. Change clothes and shower after gardening. (Pretty sure I got MAC from the dry Texas dirt where we had feral chickens in the yard.)
That's it - others may exercise more precautions, but this is working for me. I figure the extras - changing filters, equipment cleaning, masks, are a pretty minimal effort compared to dealing with the meds.
You will find a way to accommodate, and it will just be part of your routine...
Sue
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5 ReactionsThis is helpful, Sue. I think I got MAC from gardening, too. I have more exposure to soil and its contents than most. My doc hasn't suggested any lifestyle changes, air filters, or shower/water consumption changes. I keep reading about nebulizers and I have no idea how to start with one. Is there more information about them somewhere? Thank you for your help here. I'm so glad I found this site. I hope you continue to feel well.
Miriam, this sounds like a scary time. I hope you have a plan for treatment and start to feel confident about the path forward very soon. My best to you.
If you have a Facebook account you could join the group Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & More. Kelly Kats has created many guides for people like us who are trying to help ourselves with everyday Airway Clearance and Precautions. I have learned so much since joining.
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1 ReactionSo, it took me almost 2 years to start big 3. I have bronchiectasis and Mac. Md suggested nebulizing with 3% saline 2x daily first. What with Covid and all, and self study. I tried . No changes, so then took some time to improve on gerd symptoms (diet, time changes, sleeping on incline). Got an endoscopy. Still haven’t gotten swallow study(Covid scheduling difficulties). My ID dr. Came back from maternity leave, so I started 2 weeks ago. Rifampin before breakfast with a cracker and full glass of water . Ethambutol and azithromycin before bed with a cracker and a little water. M-w-f. So far ok. A little stomach issues and vivid dreams on nights I take medicine. Labs to check thyroid (I’m on synthroid) every 2 months. Eye checks and aware of any hearing changes. Thanks to everyone for getting me to this point. Oh and my ID changed her mind about 7% saline. So 7% nebs now! Yeah.
I’ve seen the FB pages but … not keen on them. Thank you, though. Very thoughtful.
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1 ReactionYeah! to 7% nebs. That should really help bring up the mucus. If you develop issues with the meds, you will find many suggestions on this group.
Sue
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1 ReactionI also learned a lot from that site, but got off the site because of some troubling things. KellyKats makes some over the too summaries of research articles For example!; "Gluten is a opioid.." When you read the research that she sites that broad statement is incorrect. Other concerns; How can someone with as many serious illnesses as she has spend so much time responding to posts? I know how much time it takes me and I have fewer ailments than she claims to have... Everyone on the site has a user name but their real name is also revealed for all to see. Only name revealed fir her is KellyKats and no profile picture so no way to check if this is a real person.
There are some very sick people in the group and I miss communicating with them , but got off the group because if the unknown about KellyKats that I was unable to verify...
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1 Reaction@bestselfever See my post about KellyKats FB group. I left the group for reasons stated in my reply.