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!

@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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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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@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!

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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

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

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@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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@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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Someone on one of the ntm patient forums I joined (maybe this one) recently posted something her doctor said which made sense to me. He said that mycobacteria are like a stinky uncle sitting on your couch. He never goes away but so long as he stays on the couch, he doesn't cause trouble.

I assume the antibiotics (hopefully) put him on the couch!

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Rits,I love this explanation, thank you. Mim

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Dear Shari,
What do you mean by 'nebulise saline and do airway clearance'? One of my problems is although I cough I cannot bring up mucous. Have had 2 bronchoscopies and they also cleared the airways, from memory i think the word 'vacuum' was used.
Regards,
Mim.

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@rits

Someone on one of the ntm patient forums I joined (maybe this one) recently posted something her doctor said which made sense to me. He said that mycobacteria are like a stinky uncle sitting on your couch. He never goes away but so long as he stays on the couch, he doesn't cause trouble.

I assume the antibiotics (hopefully) put him on the couch!

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My uncle is on the couch and I didn’t take antibiotics! Things just seem to happen with this disease!

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@mimdavidson

Dear Shari,
What do you mean by 'nebulise saline and do airway clearance'? One of my problems is although I cough I cannot bring up mucous. Have had 2 bronchoscopies and they also cleared the airways, from memory i think the word 'vacuum' was used.
Regards,
Mim.

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@mimdavidson Hi Mim, Not Shari here, but…"airway clearance" is the term applied to using nebs, exercises, or devices (or a combination) to get as much sputum as possible out of the lungs to keep it from becoming a safe harbor for nasty germs to grow.
Nebulizing with saline solution (I use 7%, prescribed by my doc) thins the mucus to make it easier to get out. Some people are instructed to neb with a bronchial dilator medication depending on their specific condition.
Clearance devices include Acapela and Aerobika – they are little hand-held machines you blow into, and there is a flutter valve that causes the air to vibrate as it comes out of your lungs. This is supposed to break up the mucus clots. After a number of exhalations, you perform a series of "huff coughs" to bring up the mucus. Sometimes mine comes up right away, often it's stubborn, and I find myself coughing it up a half hour or more later.
Other ways of airway clearance include use of a percussion vest like cystic fibrosis patients have used for a number of years. Maybe @thumperguy can tell us more about this. Or manual thumping by another person. Or a process called postural drainage where you lay down in specific positions during or after nebbing and try to cough up the secretions.
Everyone here is different, with different symptoms, other challenges, and responses to treatment.
Here is my usual routine:
Neb with saline in the nebulizer attached directly to my Aerobika device. I used tha Acapela first, but Aerobika + nebulizer gets two things done at once. You will find people here using various strengths of saline – I have MAC in my cultures, and there is some evidence that 7% can inhibit growth of that particular bacteria, so that is what I use.
Pause every few minutes during neb to "huff cough" and try to bring up junk.
After neb, huff cough several times in the next half hour.
I do this once a day, twice if my chest feels tight or I have any evidence of respiratory issues like shortness of breath. OtherwisesI try to use the Aerobika by itself a second time later in the day. (My doc says up to 4 times a day if having a cold, cough, or asthma exacerbation- haven't had to do that yet.)
All of this was demonstrated to me by my pulmonologist, pulmonology nurse, and/or their respiratory therapist. I found that VERY helpful.
Did you get demonstrations and coaching from your doc or medical staff when they were treating you before?

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@esssbeee

My uncle is on the couch and I didn’t take antibiotics! Things just seem to happen with this disease!

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I hope he stays there!

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