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MAC Question

Posted by thumperguy @thumperguy, Aug 22, 2020

Anyone with MAC been able to eliminate or control it sufficiently with 7% saline to ditch the antibios?

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shooei | @shooei | Aug 22, 2020

I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc said "you will treat within 3 years - I don't have anyone who doesn't treat within 3 years". I was having hemoptysis every 4-6 months, but "nodules" would get better in some places, worse in others, and breathing stats did not really decline over time, so I chose not to treat. Have been diagnosed for almost 4 years (but surely had it much longer). Over the last 1 1/2 year, I got serious about airway clearance and I asked to be changed from 3% saline to 7%. Now mind you, given my bouts with hemoptysis, my change to 7% was VERY slow and methodical. It took me 3 months to work up to the full 7% as I wanted to be careful not to irritate my tendency to bleed. I have been full 7% for all this year now. (OH, and I must mention, my knowledge of the 7% came ONLY from this site, never a mention of it from my docs -- thanks so much to all here who continue to help educate me).

I guess I can't say I "ditched" the antibiotics because I never started them, but I have been able to avoid them despite what my ID and pulmo said would happen. I know it could change at any time, but so far I have remained healthy and antibiotic free!!! YAY!

REPLY
4 replies
thumperguy | @thumperguy | Aug 22, 2020
In reply to @shooei "I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc..." + (show)
@shooei

I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc said "you will treat within 3 years - I don't have anyone who doesn't treat within 3 years". I was having hemoptysis every 4-6 months, but "nodules" would get better in some places, worse in others, and breathing stats did not really decline over time, so I chose not to treat. Have been diagnosed for almost 4 years (but surely had it much longer). Over the last 1 1/2 year, I got serious about airway clearance and I asked to be changed from 3% saline to 7%. Now mind you, given my bouts with hemoptysis, my change to 7% was VERY slow and methodical. It took me 3 months to work up to the full 7% as I wanted to be careful not to irritate my tendency to bleed. I have been full 7% for all this year now. (OH, and I must mention, my knowledge of the 7% came ONLY from this site, never a mention of it from my docs -- thanks so much to all here who continue to help educate me).

I guess I can't say I "ditched" the antibiotics because I never started them, but I have been able to avoid them despite what my ID and pulmo said would happen. I know it could change at any time, but so far I have remained healthy and antibiotic free!!! YAY!

Jump to this post

Shooei, what an educational post; at least for me. What’s an “ID” doc?
Like you, I learned about 7% saline here too, then informed the pulmo about it.

REPLY
1 reply
shooei | @shooei | Aug 22, 2020
In reply to @thumperguy "Shooei, what an educational post; at least for me. What’s an “ID” doc? Like you, I..." + (show)
@thumperguy

Shooei, what an educational post; at least for me. What’s an “ID” doc?
Like you, I learned about 7% saline here too, then informed the pulmo about it.

Jump to this post

Sorry, my infectious disease doc.

REPLY
irene5 Irene Estes | @irene5 | Aug 23, 2020
In reply to @shooei "I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc..." + (show)
@shooei

I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc said "you will treat within 3 years - I don't have anyone who doesn't treat within 3 years". I was having hemoptysis every 4-6 months, but "nodules" would get better in some places, worse in others, and breathing stats did not really decline over time, so I chose not to treat. Have been diagnosed for almost 4 years (but surely had it much longer). Over the last 1 1/2 year, I got serious about airway clearance and I asked to be changed from 3% saline to 7%. Now mind you, given my bouts with hemoptysis, my change to 7% was VERY slow and methodical. It took me 3 months to work up to the full 7% as I wanted to be careful not to irritate my tendency to bleed. I have been full 7% for all this year now. (OH, and I must mention, my knowledge of the 7% came ONLY from this site, never a mention of it from my docs -- thanks so much to all here who continue to help educate me).

I guess I can't say I "ditched" the antibiotics because I never started them, but I have been able to avoid them despite what my ID and pulmo said would happen. I know it could change at any time, but so far I have remained healthy and antibiotic free!!! YAY!

Jump to this post

@shooei Good for you! I think the reason your ID doctor said “treatment within three years” is because so many of us are not comfortable or convinced about treatment, and it probably takes three years to accept that treatment is necessary and be on board with it- especially if the MAC has gotten worse! irene5

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2020

Hello Don. I first discovered 7% saline as a treatment back in 2010 when I was researching lung diseases. The French had been using it successfully as a treatment. I had asked my doctors along the way about it, and they all said "Never heard of it". Finally, when I asked my Mayo doctor about it, he said yes, absolutely lets try that. That was in 2013. By 2014, I tested negative for mac and have ever since. I do not know if it was the saline that pushed that negative result or the antibiotics, or both. I went off of all antibiotics last Spring and now only do the albuterol and saline. My last sputem test from June came back negative. I think that my isolating from covid has also been protecting me from picking up extra germs. I will continue to nebulize the saline indefinitely as I think it is good for my lungs.

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2020
In reply to @shooei "I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc..." + (show)
@shooei

I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc said "you will treat within 3 years - I don't have anyone who doesn't treat within 3 years". I was having hemoptysis every 4-6 months, but "nodules" would get better in some places, worse in others, and breathing stats did not really decline over time, so I chose not to treat. Have been diagnosed for almost 4 years (but surely had it much longer). Over the last 1 1/2 year, I got serious about airway clearance and I asked to be changed from 3% saline to 7%. Now mind you, given my bouts with hemoptysis, my change to 7% was VERY slow and methodical. It took me 3 months to work up to the full 7% as I wanted to be careful not to irritate my tendency to bleed. I have been full 7% for all this year now. (OH, and I must mention, my knowledge of the 7% came ONLY from this site, never a mention of it from my docs -- thanks so much to all here who continue to help educate me).

I guess I can't say I "ditched" the antibiotics because I never started them, but I have been able to avoid them despite what my ID and pulmo said would happen. I know it could change at any time, but so far I have remained healthy and antibiotic free!!! YAY!

Jump to this post

Hello Shooie. Have you had a recent sputem test?

REPLY
1 reply
judyhodgern | @judyhodgern | Aug 23, 2020
In reply to @windwalker "Hello Don. I first discovered 7% saline as a treatment back in 2010 when I was..." + (show)
@windwalker

Hello Don. I first discovered 7% saline as a treatment back in 2010 when I was researching lung diseases. The French had been using it successfully as a treatment. I had asked my doctors along the way about it, and they all said "Never heard of it". Finally, when I asked my Mayo doctor about it, he said yes, absolutely lets try that. That was in 2013. By 2014, I tested negative for mac and have ever since. I do not know if it was the saline that pushed that negative result or the antibiotics, or both. I went off of all antibiotics last Spring and now only do the albuterol and saline. My last sputem test from June came back negative. I think that my isolating from covid has also been protecting me from picking up extra germs. I will continue to nebulize the saline indefinitely as I think it is good for my lungs.

Jump to this post

What a great story thank you for sharing!

REPLY
shooei | @shooei | Aug 23, 2020
In reply to @windwalker "Hello Shooie. Have you had a recent sputem test?" + (show)
@windwalker

Hello Shooie. Have you had a recent sputem test?

Jump to this post

My pulmo wouldn't give me one last time. Says once you have MAC you always have it. My next appointment is in 6 months, and I am going to ask for one again. He usually concedes if I beg 😁.

Are you just wondering (like me) if it is negative, or if it is just being held at bay?

Also, do you think I should have another CT at some point? He doesn't repeat those either (just goes totally by symptoms) but I really want to see if it is getting better/worse/maintaing. Though I don't want to irradiate my body more than necessary! Thoughts?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 23, 2020
In reply to @shooei "I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc..." + (show)
@shooei

I was told I am "clinically a candidate for treatment" by my pulmo. My ID doc said "you will treat within 3 years - I don't have anyone who doesn't treat within 3 years". I was having hemoptysis every 4-6 months, but "nodules" would get better in some places, worse in others, and breathing stats did not really decline over time, so I chose not to treat. Have been diagnosed for almost 4 years (but surely had it much longer). Over the last 1 1/2 year, I got serious about airway clearance and I asked to be changed from 3% saline to 7%. Now mind you, given my bouts with hemoptysis, my change to 7% was VERY slow and methodical. It took me 3 months to work up to the full 7% as I wanted to be careful not to irritate my tendency to bleed. I have been full 7% for all this year now. (OH, and I must mention, my knowledge of the 7% came ONLY from this site, never a mention of it from my docs -- thanks so much to all here who continue to help educate me).

I guess I can't say I "ditched" the antibiotics because I never started them, but I have been able to avoid them despite what my ID and pulmo said would happen. I know it could change at any time, but so far I have remained healthy and antibiotic free!!! YAY!

Jump to this post

@thumperguy Don - I went off antibiotics after 1 1/2 years back in December due to severe issues with them, even though I was still MAC-positive. The ID doc consulted with NJH, my pulmo supported the decision. I continue nebs of 7% saline with levalbuterol added as needed. In June I was symptom-free, but seen by virtual visit, less than satifying for both of us. Now my pulmo is back in clinic, and I will see her in September (I think) and do a sputum test. If still positive, they will do a CT in December to see what is going on within my lungs. I am asymptomatic at this time. With my current 7% neb, exercise and walking routine, I am also experiencing less shortness of breath. And fewer asthma exacerbations!
Sue

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2020
In reply to @shooei "My pulmo wouldn't give me one last time. Says once you have MAC you always have..." + (show)
@shooei

My pulmo wouldn't give me one last time. Says once you have MAC you always have it. My next appointment is in 6 months, and I am going to ask for one again. He usually concedes if I beg 😁.

Are you just wondering (like me) if it is negative, or if it is just being held at bay?

Also, do you think I should have another CT at some point? He doesn't repeat those either (just goes totally by symptoms) but I really want to see if it is getting better/worse/maintaing. Though I don't want to irradiate my body more than necessary! Thoughts?

Jump to this post

Shooie, originally, it was the opinion to have a 5 yr interval between ct scans because they are very powerful and can disrupt and damage cells. From what I have heard from others is that ct radiation levels have been lowered and now there is a 2 yr interval. I have not looked it up yet to see if that is true, but I will. Your dr may be thinking that a regular sputem test is unessessary because mac is a slow grower. I think it is important to get a sputem test every yr or sooner if you have a bad exacerbation. Reason being; you may have pseudomonas growing in your lungs or some other bad organism. We are at risk to other 'bugs' infecting us due to having bronchiectasis. I would stay on top of your lung health. I chose not to treat mine back in 2005 and have permanently lost a lot of lung function I think as a result of my decision.

REPLY
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