Treating MAC without the big three?

Posted by lenorj @lenorj, Feb 13 1:49pm

Can anyone give me insight , positive or negative about treating a MAC infection with out use of the big three antibiotics?

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

@blm1007blm1007

That's wonderful Nancy, 86. That is so encouraging for many and especially for me with my BE with MAI.
You did say: "Maybe I am just lucky; but, I have avoided the big three by exercising, nebulizing, balanced diet and drinking water. I see my Pulmonologist every six months who I am doing good. I am careful to wear a mask when I work in my yard."

Does that mean you, at any time along the way, you have not had a MAC infection show up in sputum.... or.... yes MAC infection showed up and decision not to take antibiotics. " I am 86. I don’t do well with most antibiotics so fear having to use the Big Three!"
I want to be sure I understand correctly considering all. THANKS
Barbara
"

Jump to this post

I have had several sputum tests and X-rays that show I have MAC. At first I coughed all the time and had lots of sputum. Now the amount of sputum is small and the cough comes and goes. I live in Louisiana and the MAC seems worse in the summer.

REPLY
@kathyjjb

Hi Barbara,
No, I don't have the need to clear after eating. It sounds like you are doing a lot in terms of airways clearance. I don't do postural drainage, though something I will try. Are you now doing postural drainage for the lower lobe? I was online and saw different airway clearing techniques to reach different areas of the lungs. I didn't pay much attention to it, but I will revisit. I recently finished reading "Breath" by James Nestor. I've been working hard on inhaling through nose and slowly exhale. Also doing exercises whenever I think of it to inhale slowly (through nose), hold breath for 3 seconds, and exhale slowly for 5 seconds. As the weeks pass, I'm breathing better, and this week forgot my daily inhaler twice-highly unusual. 95% plus of his book is not instructional but you may want to google his you tube videos. I've also started (just today) a meditation for healing. I found this "Empowering the Power Within" meditation by Dr Joe Dispenza. A warning-he's highly alternative and may not be for everyone. It's a working meditation which requires some concentration and imagination. I'm going to do it every day for the next month and see if I notice any improvement. It's a lot of visualization with the immune system being the target. Good luck Barbara, I wish you the best! Kathy

Jump to this post

Kathy-
The postural drainage is for all lobes.
One of the positions that I do: I reverse the wedge pillow and place my hips (posterior side) up on the high end of the wedge and lay back to have gravity and percussion clapping help move the mucus. While doing that I sometimes gargle some mucus up and have to interrupt the position and go back into it again.
Yes inhaling through the nose, holding the breath and releasing with pursed lip is what I try to remember to do often.
Good information shared thanks...I appreciate all information and make my decisions on what I hear/read according to what I feel is safe, comfortable and not "crazy". My Mom introduced us, me/siblings, to complimentary/alternative medicine. She was into it way back in the 1940's.
Kathy- My breathing is fine. The lung function test is off the scale in the right direction for me. You appear to be working hard at finding your way...me to...It takes time and then it appears it all will come to be second nature and go quicker...the time devoted to our lung problem routines.
Wishing you a great day and lots of good breaths.!
Barbara

REPLY
@blm1007blm1007

Kathy-
The postural drainage is for all lobes.
One of the positions that I do: I reverse the wedge pillow and place my hips (posterior side) up on the high end of the wedge and lay back to have gravity and percussion clapping help move the mucus. While doing that I sometimes gargle some mucus up and have to interrupt the position and go back into it again.
Yes inhaling through the nose, holding the breath and releasing with pursed lip is what I try to remember to do often.
Good information shared thanks...I appreciate all information and make my decisions on what I hear/read according to what I feel is safe, comfortable and not "crazy". My Mom introduced us, me/siblings, to complimentary/alternative medicine. She was into it way back in the 1940's.
Kathy- My breathing is fine. The lung function test is off the scale in the right direction for me. You appear to be working hard at finding your way...me to...It takes time and then it appears it all will come to be second nature and go quicker...the time devoted to our lung problem routines.
Wishing you a great day and lots of good breaths.!
Barbara

Jump to this post

Hi Barbara,
That’s great about your lung function it sounds like you’re doing all the right things. Mine has gone up from 50 to 65.
Yes, I’ve seen the varying positions for the postural drainage. I should add that into my airway clearing breathing exercises. I’m all for alternative approaches, your mom sounds like a trail blazer-mine was too. The meditation I’m doing visualizes and focuses on giving more energy to the immune system. Thanks for your response and I hope you have a beautify day!! Kathy

REPLY
@blm1007blm1007

Kathy-
Another good post and also encouraging.
Great also that your BMI is good.
At this point I am almost working as hard to get my BMI up which is extremely important to having success with BE and a MAC infection. I had gotten down to nearly 90 lbs from 125 lbs and that was causing a couple of problems, including my often tripping over myself and nearly falling, however, no actual fall. With having put on twelve pounds that problem has stopped. Just goes to show us what being underweight can bring about. Thank goodness overall my appetite has been good from the get go....but the weight obviously came off. People who are trying to lose weight have a hard time, sometimes, believing it is most often just as hard to put the weight back on. A reasonable amount of olive oil and avocado oil with salads etc. is helping.
As I mentioned there was improvement on my last C Scan, however, to my disappointment Dr. McShane said there is a new area in the lower left lobe. I suspect I wasn't reaching the lower lobes with the percussion clapping. Also, I think I was concentrating more on my front than my back with the percussion clapping. I am working hard on that with the exercise, percussion clapping, massage hammer device, postural drainage, ACB and huff coughing. April is another C Scan at Baylor, Dallas and hope I will get good results.
Overall I feel absolutely fine, it is just the need to clear the throat of 'sputum' and especially after eating. I don't so much as 'cough' at those times, I suck it up, pull it up, and out.
Do you have the need to clear after eating?
Barbara

Jump to this post

Very helpful! Thank you!
Could someone describe how they do percussion, especially on their back? Postures either clapping seems to help me the most but I don’t really know what I’m doing.
Thanks!

REPLY
@blm1007blm1007

Kathy-
Another good post and also encouraging.
Great also that your BMI is good.
At this point I am almost working as hard to get my BMI up which is extremely important to having success with BE and a MAC infection. I had gotten down to nearly 90 lbs from 125 lbs and that was causing a couple of problems, including my often tripping over myself and nearly falling, however, no actual fall. With having put on twelve pounds that problem has stopped. Just goes to show us what being underweight can bring about. Thank goodness overall my appetite has been good from the get go....but the weight obviously came off. People who are trying to lose weight have a hard time, sometimes, believing it is most often just as hard to put the weight back on. A reasonable amount of olive oil and avocado oil with salads etc. is helping.
As I mentioned there was improvement on my last C Scan, however, to my disappointment Dr. McShane said there is a new area in the lower left lobe. I suspect I wasn't reaching the lower lobes with the percussion clapping. Also, I think I was concentrating more on my front than my back with the percussion clapping. I am working hard on that with the exercise, percussion clapping, massage hammer device, postural drainage, ACB and huff coughing. April is another C Scan at Baylor, Dallas and hope I will get good results.
Overall I feel absolutely fine, it is just the need to clear the throat of 'sputum' and especially after eating. I don't so much as 'cough' at those times, I suck it up, pull it up, and out.
Do you have the need to clear after eating?
Barbara

Jump to this post

I have that thick something in my throat after eating

REPLY
@reneemc

I have that thick something in my throat after eating

Jump to this post

Sorry to hear you also have the thick mucus after eating, no fun at all.
I don't remember if you said you had a hiatal hernia?
I do have a hiatal hernia and I can't figure out if it is the BE with mucus or the hiatal hernia that is causing the gathering of mucus in the throat after eating. It is thicker after eating. I read that a hiatal hernia can cause mucus, yes after eating.
I have been fully at this BE routine therapy for less than a year and hope eventually it goes away...but if it is the hiatal hernia causing it...probably will still be happening.
Thank you for sharing what you also experience.
Barbara

REPLY
@mmahlik

Very helpful! Thank you!
Could someone describe how they do percussion, especially on their back? Postures either clapping seems to help me the most but I don’t really know what I’m doing.
Thanks!

Jump to this post

I use my full hands and cup them as best on can on my front on either side of the breast bone.
I am able to bend my arms to reach my back and use my hand in a fist position and "pound away" on the area above the waist up my back on either side of my spine.
On line you can look up a massage hammer. It has a flexible handle that I will also use for my back.
It works for me, however, we are all different in our sensitivities....you may have to be gentle to start, if you try it. It is as close as I can get to what a respiratory therapist might do in terms of percussion cupping to help move the mucus.
Barbara

REPLY
@nac1

I have had several sputum tests and X-rays that show I have MAC. At first I coughed all the time and had lots of sputum. Now the amount of sputum is small and the cough comes and goes. I live in Louisiana and the MAC seems worse in the summer.

Jump to this post

Nancy-
Glad to hear you do have less sputum and that you do not have it all the time.
Louisiana....lots of moisture and therefore wonderful plant and shrub nursery farms, at least I did see many on my way to visit a friend in Oakdale a few years back.
Thanks Nancy...

REPLY
@nac1

I have had several sputum tests and X-rays that show I have MAC. At first I coughed all the time and had lots of sputum. Now the amount of sputum is small and the cough comes and goes. I live in Louisiana and the MAC seems worse in the summer.

Jump to this post

Can anyone tell me about their experience on amikacin infusion. How long and how did you know if it worked

REPLY
@reneemc

I have that thick something in my throat after eating

Jump to this post

@reneemc @blm1007blm1007 I too get the mucus in the throat after eating. I have had a full gerd workup and all tests negative for gerd, so, at least in my case, that doesn’t seem to be it. The only time I really cough is while eating or after eating, which is why I pushed for a gerd workup. I return to GI doctor in a couple weeks to discuss all the testing and next steps, but he has been very uninterested in the problem, and unmotivated to address. There seems to be this attitude that since I have BE, it’s natural that I cough. But I only really cough when I eat (or right after) and why would that be if the cough is BE related? Admittedly the cough really borders on throat clearing, but even more to my point. Though I do know many here have that throat clearing sensation so it’s confusing to me since mine is specifically related to meal times.

REPLY
Please sign in or register to post a reply.