1. < MAC & Bronchiectasis

MAC Reboot - After 3 Years Post Meds

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Nov 24, 2019

Hello Group, I am glad I found you. Well, here I am again... with a reboot of MAC. Just finished my sputum tests on Monday and they called me Thursday! The CT scan was pretty evident and the sputum confirmed that it is back. After 3 years off the meds. Disappointing and (secretly) scary. However, I find a lot of comfort in knowing that it isn’t lung cancer. I smoked for about 30+ years and I have always had my lungs checked since I quit 15 years ago. That’s how we found it the first time. Anyway, like most of you have already experienced, the medication was so difficult. 18 months and I stayed faithful to taking it. I had come across another website chat group when I was contemplating go off the meds early because I just couldn’t take it anymore. Several people were discussing doing the same. I am so thankful that some of the members stressed not to go off the meds and to stick it out until the end. One member went off near the end of her time and it came back quickly. After I read that I was determined to go all the way to the finish line. And I did. I think I know why it came back and going forward I will be more careful in the environments I find myself in (I am an equestrian and spend a great deal of time in dusty, dirty barns - not always wearing a mask.) Anyway, I just wanted to say hello and give my words of encouragement to anyone who is struggling and to say thank you for all the wonderful tips and kindness you show every day. We can get through this and like I always like to say: Team work makes the dream work!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 1, 2019
In reply to @bluesplashgirl "Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it..." + (show)
@bluesplashgirl

Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it seems and I have mad respect for all of you. My horse, the one in the picture above died last January. He was recovering from an olecranon green stick fracture. He did so great! I had been rehabing him and was set to turn him out and he coliced so bad this time that euthanasia was the only right thing. Devastating. Still is. Do you see a Naturopath for your alt treatment? Please, keep us posted after you get your scans. I would love to hear how you are doing. Take care! Carolyn

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@bluesplashgirl Awe, Carolyn, I am so sorry about your horse.

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1 reply
BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 3, 2019
In reply to @windwalker "@bluesplashgirl Awe, Carolyn, I am so sorry about your horse." + (show)
@windwalker

@bluesplashgirl Awe, Carolyn, I am so sorry about your horse.

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Oh, Terri, thank you so much for that. It is much appreciated.

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 3, 2019
In reply to @windwalker "@bluesplashgirl Hi Carolyn. So glad that you found our group; we really do help each other..." + (show)
@windwalker

@bluesplashgirl Hi Carolyn. So glad that you found our group; we really do help each other get through this disease. I am sorry to hear that your mac has returned. It is common for mac to return because the reason you got it in the first place hasn't changed. Most of the time the reason is having bronchiectasis, low immune system, immunodeficiency, CF, etc. Mac is usually a secondary condition brought on by a chronic primary condition. If you click on my picture icon,; my maintenance drug regimen should come up for you to read. Right now, I am on alternating monthly meds of tobramycin and ciprofloxacin. I have been on these since 2016. I know that if I go off of them for a length of time, mac or pseudomonas will probably come back. I have been doing very well in the last three yrs. My weight came back, energy improved mostly, no more coughing, and my appetite has been back. I live a lot more carefully now too. I do not get into pools or hot tubs, stay out of the stores in the winter for the most part, wash my hands a lot, avoid sick people, and I do not work in the garden soil anymore. Thank you for sharing your photo with your horse. Did you know that horses can get mac also?

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Hi Terri, I have COPD and also have scarring in my lungs. I am still waiting to see my infectious disease doctor (it’s the end of year craziness with trying to get an appointment). I will talk to her about maintenance after I am finished with the antibiotics in 18 months. I really never thought I would be back in this place again. I am fairly certain I got MAC from the horse barn that I was boarding at. Super dirty, dusty and moldy! I also had aspergillus pneumonia (still waiting to see if I have that back, too) and one of the horse had an “infection” in it’s eye they couldn’t get rid of until they finally diagnosed it as aspergillus! So, now that Dylan is gone and I have stopped riding I am hoping that after my next round of drugs and lots of precautions with gardening, etc. it will stay gone! Thanks for all your great information. What a relief to have this group. I hope you are well and happy. Carolyn

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 3, 2019
In reply to @bluesplashgirl "Hi Terri, I have COPD and also have scarring in my lungs. I am still waiting..." + (show)
@bluesplashgirl

Hi Terri, I have COPD and also have scarring in my lungs. I am still waiting to see my infectious disease doctor (it’s the end of year craziness with trying to get an appointment). I will talk to her about maintenance after I am finished with the antibiotics in 18 months. I really never thought I would be back in this place again. I am fairly certain I got MAC from the horse barn that I was boarding at. Super dirty, dusty and moldy! I also had aspergillus pneumonia (still waiting to see if I have that back, too) and one of the horse had an “infection” in it’s eye they couldn’t get rid of until they finally diagnosed it as aspergillus! So, now that Dylan is gone and I have stopped riding I am hoping that after my next round of drugs and lots of precautions with gardening, etc. it will stay gone! Thanks for all your great information. What a relief to have this group. I hope you are well and happy. Carolyn

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@bluesplashgirl, Hi Carolyn. Yeah, I have COPD and scarring too; along with bronchiectasis, and mild pulmonary hypertension, and SVT of my heart. Oh yeah, and I am an Alpha-1 Carrier. I have been reading almost non-stop about mac and lung diseases since 2007. I did come across articles about horses and chickens being associated with infectious diseases. Like you said, stables can be dusty and moldy. In the case of chickens; their coops can really be nasty. Many bird and chicken keepers tend to catch lung diseases. I have a feeling it may be due to the very fine feather/queill scales that they slough off and get inhaled. Also when their droppings turn into dust form and get inhaled. How long have you known about your COPD? Do you currently have many COPD symptoms?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 3, 2019

@bluesplashgirl, Carolyn, I am curious about something you wrote. How did you get a positive mac reading after only four days in the lab? Thnx!

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 5, 2019

Hi, My thoughts exactly. I finished my last sputum test on a Tuesday and they called me on Thursday and said it was back. I called to talk to my doctor and only got the nurse so I sent an email to both of my specialists wondering how it presented so quickly and if so, why do I have to wait to get back on the medication? My appointent with my infectious disease doctor isn’t until January 13th and I feel like I have been hit by a truck and they backed up over me to see what they hit! I will keep you posted when I receive a response. I am frustrated...

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 5, 2019
In reply to @windwalker "@bluesplashgirl, Hi Carolyn. Yeah, I have COPD and scarring too; along with bronchiectasis, and mild pulmonary..." + (show)
@windwalker

@bluesplashgirl, Hi Carolyn. Yeah, I have COPD and scarring too; along with bronchiectasis, and mild pulmonary hypertension, and SVT of my heart. Oh yeah, and I am an Alpha-1 Carrier. I have been reading almost non-stop about mac and lung diseases since 2007. I did come across articles about horses and chickens being associated with infectious diseases. Like you said, stables can be dusty and moldy. In the case of chickens; their coops can really be nasty. Many bird and chicken keepers tend to catch lung diseases. I have a feeling it may be due to the very fine feather/queill scales that they slough off and get inhaled. Also when their droppings turn into dust form and get inhaled. How long have you known about your COPD? Do you currently have many COPD symptoms?

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Hi Again Terri, I have known about COPD since 2014 when I was first diagnosed with MAC/Aspergillis pneumonia. Right now I have that strange horse cough that produces nothing and become short of breath. I also have mitral valve prolapse and Factor V Leiden homozygous. What is SVT and Alpha-1 carrier? Thanks for the chicken info. We have thought about chickens and I have been reluctant because it would be me taing care of them. Now I will say no!

REPLY
mimdavidson | @mimdavidson | Dec 16, 2019

Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.

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6 replies
BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 17, 2019
In reply to @mimdavidson "Hello, My name is Mim and I live in Australia, Melbourne to be precise. I came..." + (show)
@mimdavidson

Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.

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Hello Mim, I am so sorry you think it has returned. This group is wonderful for information regarding these things. I am currently waiting to start treatment for the second time. They are currently testing my cultures against a variety of antibiotics. I was on ethambutol, rifampin, and azithromycin for 18 months and they want to be certain I don’t have a resistance to the next round they put me on. Not sure what I will be on yet. Our mentor Terri had written that the reason it comes back is what caused it in the first place has not changed. That made sense to me. She also talked about a maintenance once finished with the 18+ months.
So, welcome to this great group. I hope you find answers and solace here. Best, Carolyn

REPLY
pfists | @pfists | Dec 17, 2019
In reply to @mimdavidson "Hello, My name is Mim and I live in Australia, Melbourne to be precise. I came..." + (show)
@mimdavidson

Hello,
My name is Mim and I live in Australia, Melbourne to be precise. I came off medication 2 years ago after 20 months on 3 antibiotics and prior to that 3 years on one.
I have joined your group because I think it has come back. I will see my Respiratory Specialist early in the New Year. I was interested to see if there were others who had got MAC a second time.
It was the Head of Infectious Diseases at one of our bigger hospitals who treated me for the time I was on 'the cocktail' of antibiotics and when he decided to stop them he said,'I don't know if you are cured and I don't know if it will come back'. I also have bronchiectasis.
Regards,
Mim.

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@mimdavidson
Welcome Mim
Yes if you have brochectasis you will be susceptible to these organisms and others. Do you nebulize saline and do airway clearance? Trying to keep the airway clear and clear is essential.
I have had mycobacteria abcessus show up and disappear several different times over the last 4 years and I was never treated with the antibiotics. I guess abcessus is the more difficult one to treat too.
So this disease can go away on its own too.
Also as Carolyn said our mentor Teri uses rotating antibiotics a different one each month for 7 days which is working for her.
Take care.
Shari

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