(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep...so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep...so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

Hi All! I have coughed for 5 years and thought it will never end. I have one vocal cord and Sjogrens plus RA so I thought that’s how it’s going to be for the rest of my life. But I stopped all the coughing 3 months ago and I still can’t believe it myself! In July I was tested negative for Mac and pseudomonas and that’s when I stopped coughing. I am not sure if it’s meds or results but it stopped at the same time. I still sip water at night because of the dryness in my throat because of Sjogrens but no coughing. So I do believe it will get better. Hugs to all Rita

Hi All! I have coughed for 5 years and thought it will never end. I have one vocal cord and Sjogrens plus RA so I thought that’s how it’s going to be for the rest of my life. But I stopped all the coughing 3 months ago and I still can’t believe it myself! In July I was tested negative for Mac and pseudomonas and that’s when I stopped coughing. I am not sure if it’s meds or results but it stopped at the same time. I still sip water at night because of the dryness in my throat because of Sjogrens but no coughing. So I do believe it will get better. Hugs to all Rita

@ginak Thank you for sharing the information about coughing. I'm allergic to many things, both indoor and outdoor kinds. My throat is constantly in a irritated state. I can go for hours without coughing even once. Then the throat gets itchy and I immediately feel the need to cough. I have tried to suppress it by sipping water. Sometimes it works and sometimes not. When I cannot control it with water, holding the cough would only lead to eventual violent eruption of longer and stronger coughs. At times, I do suspect that my allergies are only part of the reason that I cough. The other part is kind of mental, because sometimes when I realize that I haven't coughed for a while, my throat will immediately feel itchy. Also I don't cough in my sleep although my throat must have felt the same as when I'm awake. So it is definitely a combination of physical and mental aspects that induce the cough.

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep...so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

@anniepie Thank you so much. I will be trying some vitamins, I wish there was some sort of protocol to follow tho. I will definitely stay on mayo and help where I can. Hugs to you too Annie