Thanks so much Sue. So brave to take the3 and so brave to stop them. I liked your hearing your doctors philosophy. I an not too comfortable with my doctors at this point. One was very sure of my Lady Windermere disease on seeing CT with nodule and cavitation and tree in bud / bronchiectasis, etc, but the interview was short and the elderly doc spoke more about him than me and offered minimal info. He asked me to call back in a week to see if I was producing sputum and I did, twice, and he did not return the calls. No plan for follow up other than that. He prescribed mucin and Symbicort inhaler. No follow appointment. I did see another pulmonoligist in the same system while waiting for referred older doc. He could see me within days of my primary doc’s getting CT results. This pulmonologist was young, had another specialty in sleep issues, seemed less experienced, and was hard to understand with an accent and would not respond much to my questions. So I don’t know if I should look further or see if an infectious disease doc will contacted for referral. Both pulmonologists were from the same health system and prescribed different meds. None accepted my suggestion for Levelbuterol if it was appropriate as my hands shake with albuterol and steroids and muscles get so weak with prolonged steroids. Sorry for that long answer! I hope my immunology appt goes better this week! So happy you are doing ok without more antibiotic therapies!
Hello, the forum knows me as Regina…you have found a wealth of shared experience in this group…and yes Sue as Mentor is like no other.
Here is my contribution today. Firstly, I share my sympathy…if we were standing next to each other…that would come as a strong long hug with a kiss on both cheeks (family culture). I believe that many hold back on expressing or acknowledging the “sadness” or disappointment of the not good events or experiences we have…and that makes those experiences harder to live with. I am sad for each and every one of us in this group…YET…I am grateful and enthusiastic for each and every one also…that we are strong, and we are determined, and we are real.
My case to share. I too was labeled Lady Windermere Syndrome. MAC came out of nowhere…during pandemic. As Sue has pointed out…so to grow…I first realized something was wrong 2years before diagnosis when climbing 2 flights of stairs left me breathless and with legs that felt like concrete pillars. I was 62, 118lbs, very fit and active. The SOB (shortness of breath) resulted in a pulmonologist telling me I had late onset Asthma and sent me home also with inhalers (Albuterol & Brio). My PFT(pulmonary function test) were tough to handle…but I always passed…good high oxygen levels…I was too healthy.
This went on for 2 years…I got more & more exhausted and weak. SOB never got better…it got worse. Cardiac doctors ran all sorts of diagnostics because my BP shot up…when I struggled for breath…& I would hyperventilate a lot or just stop breathing. Again, I was too healthy said the docs. 2 years later during the pandemic…I had horrible chest pain so cardiac doc sent me to ER for a suspected PE(pulmonary embolism). The CAT scan showed the truth…the nodules and bronchiectasis were in black and white. Another CAT scan & Bronchoscopy later (2 months after ER visit) confirmed MAC. Off the inhalers (my pulmonologist said steroids were not a good idea on daily basis)…new sad diagnosis and the unknown swirling around us(my blessed husband lives every moment of this with me)…I felt so so sick…I insisted they treat me. Because of my low BMI, my height(🤷🏻♀️) and my weakness…they offered me the cocktail of three (Azithromycin, Ethambutol, Rifampin). Like many will testify, not an easy treatment plan, I managed to stay on it for 6 months. The side effects were my reason for quitting the treatment plan. The good news is that during those six months, I got my strength back, my quality of life was returning to what I had (I had lost my voice and my hearing was impaired). I went to NJH in Denver CO for a second opinion…they are an amazing team of superstars…get it done in record time…they have the drill down best(I worked in a hospital in NC and come from doctor family). I visit NJH in 2 weeks for my year follow up. NJH works in tandem with my ID doctor here in NC.
So…sharing my thoughts….get a good team of doctors ( Infectious Disease, Pulmonologist and PCP..& any other specialty you require) get a second opinion, weigh and pray about how you feel and what you want for yourself & family today, tomorrow, next week….and make the best decision for yourself. Medications work…sometimes…drugs always have a trade off…they can and do save lives…sometimes.
No pharmaceutical company has come up with “the treatment pill” to cure MAC…medicine has not devised the treatment to reverse bronchiectasis…yet. The nodules and any cavities need to be followed closely by your team…meaning repeated CAT scans (mine are every 6 months) to measure.
Hope this helps in some way. Be safe and brave.
Regina
Thanks so much Sue. So brave to take the3 and so brave to stop them. I liked your hearing your doctors philosophy. I an not too comfortable with my doctors at this point. One was very sure of my Lady Windermere disease on seeing CT with nodule and cavitation and tree in bud / bronchiectasis, etc, but the interview was short and the elderly doc spoke more about him than me and offered minimal info. He asked me to call back in a week to see if I was producing sputum and I did, twice, and he did not return the calls. No plan for follow up other than that. He prescribed mucin and Symbicort inhaler. No follow appointment. I did see another pulmonoligist in the same system while waiting for referred older doc. He could see me within days of my primary doc’s getting CT results. This pulmonologist was young, had another specialty in sleep issues, seemed less experienced, and was hard to understand with an accent and would not respond much to my questions. So I don’t know if I should look further or see if an infectious disease doc will contacted for referral. Both pulmonologists were from the same health system and prescribed different meds. None accepted my suggestion for Levelbuterol if it was appropriate as my hands shake with albuterol and steroids and muscles get so weak with prolonged steroids. Sorry for that long answer! I hope my immunology appt goes better this week! So happy you are doing ok without more antibiotic therapies!
Hi cmb1,
I also live in New Orleans. Discovered I had bronchiectasis and Mac at beginning of covid . The first pulmonologist I went to was hopeless. Am just seeing an infectious disease doctor now and on the 6 th month of antibiotics. I had to drop off rifampin due to lo platelets. I was wondering if others on this forum had found local support groups helpful (prior to covid)?
Hello, the forum knows me as Regina…you have found a wealth of shared experience in this group…and yes Sue as Mentor is like no other.
Here is my contribution today. Firstly, I share my sympathy…if we were standing next to each other…that would come as a strong long hug with a kiss on both cheeks (family culture). I believe that many hold back on expressing or acknowledging the “sadness” or disappointment of the not good events or experiences we have…and that makes those experiences harder to live with. I am sad for each and every one of us in this group…YET…I am grateful and enthusiastic for each and every one also…that we are strong, and we are determined, and we are real.
My case to share. I too was labeled Lady Windermere Syndrome. MAC came out of nowhere…during pandemic. As Sue has pointed out…so to grow…I first realized something was wrong 2years before diagnosis when climbing 2 flights of stairs left me breathless and with legs that felt like concrete pillars. I was 62, 118lbs, very fit and active. The SOB (shortness of breath) resulted in a pulmonologist telling me I had late onset Asthma and sent me home also with inhalers (Albuterol & Brio). My PFT(pulmonary function test) were tough to handle…but I always passed…good high oxygen levels…I was too healthy.
This went on for 2 years…I got more & more exhausted and weak. SOB never got better…it got worse. Cardiac doctors ran all sorts of diagnostics because my BP shot up…when I struggled for breath…& I would hyperventilate a lot or just stop breathing. Again, I was too healthy said the docs. 2 years later during the pandemic…I had horrible chest pain so cardiac doc sent me to ER for a suspected PE(pulmonary embolism). The CAT scan showed the truth…the nodules and bronchiectasis were in black and white. Another CAT scan & Bronchoscopy later (2 months after ER visit) confirmed MAC. Off the inhalers (my pulmonologist said steroids were not a good idea on daily basis)…new sad diagnosis and the unknown swirling around us(my blessed husband lives every moment of this with me)…I felt so so sick…I insisted they treat me. Because of my low BMI, my height(🤷🏻♀️) and my weakness…they offered me the cocktail of three (Azithromycin, Ethambutol, Rifampin). Like many will testify, not an easy treatment plan, I managed to stay on it for 6 months. The side effects were my reason for quitting the treatment plan. The good news is that during those six months, I got my strength back, my quality of life was returning to what I had (I had lost my voice and my hearing was impaired). I went to NJH in Denver CO for a second opinion…they are an amazing team of superstars…get it done in record time…they have the drill down best(I worked in a hospital in NC and come from doctor family). I visit NJH in 2 weeks for my year follow up. NJH works in tandem with my ID doctor here in NC.
So…sharing my thoughts….get a good team of doctors ( Infectious Disease, Pulmonologist and PCP..& any other specialty you require) get a second opinion, weigh and pray about how you feel and what you want for yourself & family today, tomorrow, next week….and make the best decision for yourself. Medications work…sometimes…drugs always have a trade off…they can and do save lives…sometimes.
No pharmaceutical company has come up with “the treatment pill” to cure MAC…medicine has not devised the treatment to reverse bronchiectasis…yet. The nodules and any cavities need to be followed closely by your team…meaning repeated CAT scans (mine are every 6 months) to measure.
Hope this helps in some way. Be safe and brave.
Regina
Dearest Regina-
You wrote MY story!!
Diagnosed with Bronchiectasis in 2018 but other than flareups a couple times a year that responded well to antibiotics, I was fine!! I too am petite, 5’5 and 113 lbs before getting diagnosed with MAC this year. Now down to 100 and falling. Used to exercise like a 20 year old 3 times a week ( I’m 58) but now out of breath walking around the house! Waiting for culture sensitivity tests to come back to decide treatment. My primary doc sent me to palliative care which has been wonderful with on call symptom advice/ assistance, as well as counseling. Which is the other head of this monster!!! With physical symptoms of SOB , daily fever, fatigue, chest pain—the grief, depression, anxiety are just as real!
D
Um, no, my friends and family will assure you that I am no saint. But I am a Mayo Connect Mentor, a volunteer who watches a couple of specific topics and responds to others.
I want to assure you that anxiety and depression are VERY normal first reactions to the diagnosis of MAC and bronchiectasis. Your best ally is to get informed, and Mayo Connect and National Jewish Health (NJH - https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos) are 2 excellent places to start.
I hear you as far as the rapid fall from vigorous to wiped out! When I was diagnosed with MAC and bronchiectasis four years ago, I had been ill at first intermittently and then constantly with one asthma attack or lung infection after another for four years. I couldn't walk a block, and mostly just coughed and slept.
Worse, I was fearful and had never heard of MAC or bronchiectasis. And my pulmonologist was less than helpful. All of that led me to this group and Mayo Connect where I was able to get good information, support and encouragement from wonderful people who understood.
I learned so much from those who had walked this path before me, and were walking it with me that when I was asked to volunteer I was honored to accept.
Most of all, with this "rare disease," I learned that I need to be my own best advocate, and be as educated as possible because not all the professionals have the time to keep up on the latest treatments for a condition they may only see rarely. The second thing I learned was to ask questions. And the third is that, with treatment and good personal care, bronchiectasis is a condition you can live with, and are unlikely to die from.
So please take a deep breath, read here, look at NJH if you like, ask all the questions you have, and make sure you have a good care team.
What is the most pressing question I can answer for you this weekend?
Sue
Hi Sue!
So the pulmonologist who did my bronochoscopy just messaged me that they are sending my cultures to the Mayo Clinic. Is that a good thing? Didn’t elaborate just posted it on my patient portal
Hi Sue!
So the pulmonologist who did my bronochoscopy just messaged me that they are sending my cultures to the Mayo Clinic. Is that a good thing? Didn’t elaborate just posted it on my patient portal
Absolutely great! Like NJH, Mayo not only grows the culture, but then tests for the quantity of bacteria to determine whether treatment is recommended and tests to see which drugs will work best.
I lost an unintentional 20 pounds and the MD was wondering why. MD ordered a CT scan and found several nodules in different parts of my lungs. At that point we began doing some testing. TB = negative, while MAC = positive test results.
I will begin drug therapy on Monday. Am very anxious about taking these toxic meds.
Do you or anyone else know how long it takes to get hit with side effects from taking these 3 different antibiotics?
In regards to the Mayo Clinic, it seems there is no other MAC forum out there. This is the only MAC forum I could find.
You have a good holiday weekend.
Thanks again for responding to my question.
Hi Sue,
For the time you have known about MAC lung disease and helped people and known about the side effects of the big 3 antibiotics, have you heard or known anyone who has been hit with blindness, color blindness, or loss of central vision, or other vision issues by taking Ethambutol?
I lost an unintentional 20 pounds and the MD was wondering why. MD ordered a CT scan and found several nodules in different parts of my lungs. At that point we began doing some testing. TB = negative, while MAC = positive test results.
I will begin drug therapy on Monday. Am very anxious about taking these toxic meds.
Do you or anyone else know how long it takes to get hit with side effects from taking these 3 different antibiotics?
In regards to the Mayo Clinic, it seems there is no other MAC forum out there. This is the only MAC forum I could find.
You have a good holiday weekend.
Thanks again for responding to my question.
Anxiety is almost the universal first reaction to the news of a MAC infection and what we often call "the big 3".
Some people breeze through treatment with minimal or moderate side effects, while others struggle with issues the whole time.
The best advice I have seen, and wish I knew in 2018, is to start the meds one at a time with about 2 weeks between each addition. That way if you react badly you will know which drug is the culprit.
Has your doc suggested it?
My next suggestion is to plan to have little interest in food for a while. Plan now to keep highly nutritious, easy to eat foods on hand. I used protein drinks, cashews, cheese , smoothies and made myself eat something every 1-2 hours. Ginger tea and hard gingermcandy were helpful with queasiness.
There is a lot of great information here, just use the search lens at the top to type any topic of interest and you'll find a lot of help. Or just ask...
Sue
Connect
Connect
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Helpful
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Hello, the forum knows me as Regina…you have found a wealth of shared experience in this group…and yes Sue as Mentor is like no other.
Here is my contribution today. Firstly, I share my sympathy…if we were standing next to each other…that would come as a strong long hug with a kiss on both cheeks (family culture). I believe that many hold back on expressing or acknowledging the “sadness” or disappointment of the not good events or experiences we have…and that makes those experiences harder to live with. I am sad for each and every one of us in this group…YET…I am grateful and enthusiastic for each and every one also…that we are strong, and we are determined, and we are real.
My case to share. I too was labeled Lady Windermere Syndrome. MAC came out of nowhere…during pandemic. As Sue has pointed out…so to grow…I first realized something was wrong 2years before diagnosis when climbing 2 flights of stairs left me breathless and with legs that felt like concrete pillars. I was 62, 118lbs, very fit and active. The SOB (shortness of breath) resulted in a pulmonologist telling me I had late onset Asthma and sent me home also with inhalers (Albuterol & Brio). My PFT(pulmonary function test) were tough to handle…but I always passed…good high oxygen levels…I was too healthy.
This went on for 2 years…I got more & more exhausted and weak. SOB never got better…it got worse. Cardiac doctors ran all sorts of diagnostics because my BP shot up…when I struggled for breath…& I would hyperventilate a lot or just stop breathing. Again, I was too healthy said the docs. 2 years later during the pandemic…I had horrible chest pain so cardiac doc sent me to ER for a suspected PE(pulmonary embolism). The CAT scan showed the truth…the nodules and bronchiectasis were in black and white. Another CAT scan & Bronchoscopy later (2 months after ER visit) confirmed MAC. Off the inhalers (my pulmonologist said steroids were not a good idea on daily basis)…new sad diagnosis and the unknown swirling around us(my blessed husband lives every moment of this with me)…I felt so so sick…I insisted they treat me. Because of my low BMI, my height(🤷🏻♀️) and my weakness…they offered me the cocktail of three (Azithromycin, Ethambutol, Rifampin). Like many will testify, not an easy treatment plan, I managed to stay on it for 6 months. The side effects were my reason for quitting the treatment plan. The good news is that during those six months, I got my strength back, my quality of life was returning to what I had (I had lost my voice and my hearing was impaired). I went to NJH in Denver CO for a second opinion…they are an amazing team of superstars…get it done in record time…they have the drill down best(I worked in a hospital in NC and come from doctor family). I visit NJH in 2 weeks for my year follow up. NJH works in tandem with my ID doctor here in NC.
So…sharing my thoughts….get a good team of doctors ( Infectious Disease, Pulmonologist and PCP..& any other specialty you require) get a second opinion, weigh and pray about how you feel and what you want for yourself & family today, tomorrow, next week….and make the best decision for yourself. Medications work…sometimes…drugs always have a trade off…they can and do save lives…sometimes.
No pharmaceutical company has come up with “the treatment pill” to cure MAC…medicine has not devised the treatment to reverse bronchiectasis…yet. The nodules and any cavities need to be followed closely by your team…meaning repeated CAT scans (mine are every 6 months) to measure.
Hope this helps in some way. Be safe and brave.
Regina
-
Like -
Helpful -
Hug
6 ReactionsHi cmb1,
I also live in New Orleans. Discovered I had bronchiectasis and Mac at beginning of covid . The first pulmonologist I went to was hopeless. Am just seeing an infectious disease doctor now and on the 6 th month of antibiotics. I had to drop off rifampin due to lo platelets. I was wondering if others on this forum had found local support groups helpful (prior to covid)?
-
Like -
Helpful -
Hug
1 ReactionDearest Regina-
You wrote MY story!!
Diagnosed with Bronchiectasis in 2018 but other than flareups a couple times a year that responded well to antibiotics, I was fine!! I too am petite, 5’5 and 113 lbs before getting diagnosed with MAC this year. Now down to 100 and falling. Used to exercise like a 20 year old 3 times a week ( I’m 58) but now out of breath walking around the house! Waiting for culture sensitivity tests to come back to decide treatment. My primary doc sent me to palliative care which has been wonderful with on call symptom advice/ assistance, as well as counseling. Which is the other head of this monster!!! With physical symptoms of SOB , daily fever, fatigue, chest pain—the grief, depression, anxiety are just as real!
D
Hi Sue!
So the pulmonologist who did my bronochoscopy just messaged me that they are sending my cultures to the Mayo Clinic. Is that a good thing? Didn’t elaborate just posted it on my patient portal
Absolutely great! Like NJH, Mayo not only grows the culture, but then tests for the quantity of bacteria to determine whether treatment is recommended and tests to see which drugs will work best.
Hi there does anyone have a suggestion on taking the 3 big drugs for MAC lung disease?
Azithromycin, Ethambutol, and Rifampin?
I have been diagnosed with MAC lung disease and will begin taking drugs in 2 days.
Thank you.
Hello, this may be one of the most asked questions in the MAC discussion group. If you click the link below, you'll find a lot of helpful information.
https://connect.mayoclinic.org/discussion/starting-mac-drugs/
Do you mind telling us how your MAC was diagnosed, and how you found Mayo Connect?
Sue
-
Like -
Helpful -
Hug
1 ReactionHi Sue,
Thank you for responding back to me.
I lost an unintentional 20 pounds and the MD was wondering why. MD ordered a CT scan and found several nodules in different parts of my lungs. At that point we began doing some testing. TB = negative, while MAC = positive test results.
I will begin drug therapy on Monday. Am very anxious about taking these toxic meds.
Do you or anyone else know how long it takes to get hit with side effects from taking these 3 different antibiotics?
In regards to the Mayo Clinic, it seems there is no other MAC forum out there. This is the only MAC forum I could find.
You have a good holiday weekend.
Thanks again for responding to my question.
Hi Sue,
For the time you have known about MAC lung disease and helped people and known about the side effects of the big 3 antibiotics, have you heard or known anyone who has been hit with blindness, color blindness, or loss of central vision, or other vision issues by taking Ethambutol?
Thanks again Sue.
Anxiety is almost the universal first reaction to the news of a MAC infection and what we often call "the big 3".
Some people breeze through treatment with minimal or moderate side effects, while others struggle with issues the whole time.
The best advice I have seen, and wish I knew in 2018, is to start the meds one at a time with about 2 weeks between each addition. That way if you react badly you will know which drug is the culprit.
Has your doc suggested it?
My next suggestion is to plan to have little interest in food for a while. Plan now to keep highly nutritious, easy to eat foods on hand. I used protein drinks, cashews, cheese , smoothies and made myself eat something every 1-2 hours. Ginger tea and hard gingermcandy were helpful with queasiness.
There is a lot of great information here, just use the search lens at the top to type any topic of interest and you'll find a lot of help. Or just ask...
Sue
-
Like -
Helpful -
Hug
1 Reaction