← Return to Starting Arikayce - nervous

Discussion

Starting Arikayce - nervous

MAC & Bronchiectasis | Last Active: Jan 22, 2020 | Replies (85)

Comment receiving replies
@bibes

I wouldn’t take those antibiotics the three because of the terrible side effects or possible side effects. Like losing your eyesight and or your hearing being sick which I’m not right now and even if I were I would risk that. Plus it is my understanding that only 60% of those who take these drugs are cured. And 10% the Mac comes back. And at my age it certainly isn’t worth it. As for my tiredness I have good days and bad days. Thank you for your interest.

Jump to this post


Replies to "I wouldn’t take those antibiotics the three because of the terrible side effects or possible side..."

@bibes...I read your response and wondered how you had stolen my thoughts and words. My exact sentiments!! What might be of interest to you that I recently learned....is there can be a natural conversion of MAC. And, I believe I read somewhere, upwards of possibly 40% of MAC patients just have it "go away". Someone, please correct me if I have that wrong. That gives great hope...in the meantime while hoping for this, keep your lungs clean. There are some natural proactive practices that you might look into. Are you nebulizing a 7% solution of saline? It helps you cough up the junk in your lung. Talk to your Dr about it. Also, there is an herbal remedy that many on this site take called Clear Lungs by Ridgecrest Herbals. It is the extra strength formula in the Blue bottle. It is a compound of Chinese Herbs for keeping the airways clear. I take one a day. I also take NAC which is great for the lungs. Here is a link for info on NAC for the lungs. https://universityhealthnews.com/daily/nutrition/nac-benefits-helps-lung-problems-addictions-autism-bipolar-and-more/

I am hoping with this preventative care that my MAC will stay stable or even convert. The last and maybe most important thing that I have learned from my Dr at Mayo....If you have acid reflux and it may be silent, fluids could be aspirated into the lungs. Sleep on a wedge and do not drink or eat 3 hours before bed. We are both fortunate that we are pretty much asymptomatic. I am tired, tired, tired also and sometimes have excess phlegm and what appears to be sputum with infection...little balls of colored phlegm...and sometimes Short of Breath. That is it so far. Anyway...Just wanted to put in my two cents to someone with the same mindset as me. I really do not think I would ever entertain the big 3 under any circumstances. I say that not having some of the difficult issues that many on this site experience. I wish for us all to regain our health and feel better...I hope the same for you, Bibes...Good luck...and sorry if I am too verbose, I can't help it. haha. Best, Kate