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

@heathert Fastastic news for you too! Yes I know it must be a bit scary for the future -- maybe you could try things like intermittent high vitamin D or other things to help protect you in future after tyhe meds stop.
You've been a wonderful help to me Heather. i hope you can stay in contact with us in future. Hugs and thanks from Annie

Thanks Kate @alleycatkate -- I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out -- eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

@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

@anniepie Good luck. I hope the cardiologist will be helpful to you. Please update us.
🤗 Kate

What is the connection between the Big 3 and high cholesterol? I hadn’t heard of that.
Thanks,

@kathyh The only connection I know of is the effects of both on the liver. One of the big three is of particular concern for the liver, and since most cholesterol meds increase liver enzymes, it can be problematic to take both. I was given the choice of being on cholesterol meds or off while on the Big 3. I chose off. (Irene5)

Thanks!

Hi Kathy @kathyhg. The Big 3 don't cause high cholesterol. The problem is that Rifampicin can, for some people, interact with anti-cholesterol drugs, making those drugs stop working. As a result, because the anti-cholesterol drugs stop working, people with a cholesterol problem before they took the Big 3, can find they have high cholesterol again. That's what happened for me. I hope this expalantion helps, Annie

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 Wow thanks for that info, very informative, so maby it is not from the MAC but just our sensitivities, which I have had all my life and maby notice it more when I know I have a lung problem.