Connect
Has anyone used KIVO?
I’ve been referred to the KIVO program by my pulmonologist. It’s an AI coached program for people with COPD from what I understand. I have bronchiectasis and am about to be treated for MAC for the third time. I have a horrible time expelling sputum, and it’s quite painful. Has anyone used this program?
The referral stems from my noticing that I was having some discomfort in the front of my neck when bending forward. After scans showed nothing, I started paying closer attention to my mechanics and noticed that during exercise I am only using my lungs to breathe, not my diaphragm. In fact, when I lay prone and engage my diaphragm to breathe, it’s exhausting! Thus the referral. I’m also to see a respiratory therapist.
.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@tracestew Is this the program to which you are being referred?
https://kivohealth.com/
I see that it is AI driven, and quite new. It will be interesting to hear your feedback.
I have asthma and bronchiectasis, and really appreciate working with a respiratory therapist, but they are extremely scarce outside of hospitals and specialty clinics, so hopefully KIVO can provide some help for those with limited access to live, in-person RT.
-
Like -
Helpful -
Hug
2 Reactions@sueinmn yes! I will be sure to provide feedback.
-
Like -
Helpful -
Hug
1 ReactionThis sounds really interesting .
I’ll be following to hear how you like the program and if it’s helpful.
-
Like -
Helpful -
Hug
1 ReactionThis is also my problem diaphragm / abdomen/ intercostal muscle disfuction. Nearly all respiratory doctors completely ignore this despite it contributing to 50% of lung function. Lots antibiotics they hand out for this MAC have serious effects on your muscles and gut leaving you severely weakened and therefore more breathless. in fact Fluroquinolones antibiotics (Ciprofloxacin, levofloxacin, moxifloxacin) directly attack muscles and nerves, these antibiotics nearly gave me respiratory failure through this very action.
@damcipro Interesting that you said that "serious effects on your muscles".
I was prescribed an antibiotic due to an injury, two substantial cuts on my leg, and given the antibiotic as a precautionary measure this past week.
I rarely take mediations but because of the type of wound/injury I started it and then stopped.
As in other times with taking medications my back went out, muscles, with just three tablets.
My belief is that it is due to sodium in medications. Meaning I develop a sodium/potassium imbalance. When this happens, for me, I take potassium tablet(s) and it relieves the pain after a short while.
Barbara
@blm1007blm1007 yes appreciate what you say but the side effects of Fluroquinolone (Ciprofloxacin,Levofloxacin ect) go way beyond that mechanism that nobody seems to understand hence the reason they should have been banned years ago.
For me and hundreds of thousands world wide have lead to a multi systemic breakdown of muscle and nerve tissue and progressive weakness and permanent disability that mimic many autoimmune diseases. Look into Fluroquinolone Toxicity syndrome.
https://assets.publishing.service.gov.uk/media/685d0272cc61c2e4bb04de3d/Fluoroquinolones_PAR_for_publication.pdf
-
Like -
Helpful -
Hug
3 Reactions@damcipro
Hi. I was diagnosed with MAC in 2016. I already had a diagnosis of bronchiectasis. I was completely asymptomatic until I got very run down caring for my husband who had Alzheimer's. Long journey...but I wanted to say an infectious disease doc treated me for a year with Clofazimine and Nuzyra ..zero side effects besides a nice tan from the Clofazimine. I tested negative after that. But MAC had already done some dirty work and I had an active hole in my right lung. My pulmonary referred me to a pulmonary surgeon who determined I needed a lobectomy. That was December 2025. In the hospital 2 weeks. No pain except recovering from a chest tube I had those 2 weeks. That goes through muscle, tendons, nerves and your rib cage. That I am still dealing with. Some numbness and discomfort. The say 6 more months for healing. Nerves take forever. But I'm so much better! Still have to clear mucus because I still have bronchiectasis but I'm so much better. Ask about those 2 drugs. I am still negative but worry about a reinfection of course. I no longer garden which I miss. I was avid but now I have a helper that takes care of all that for me so I can still enjoy my yard and plants. I have been a physical fitness enthusiast most my life and even ran marathons. I started back to the gym two months after surgery and pretty much back to my routine including weight lifting. God Bless! This journey is rough but keep plugging and educating yourself.
-
Like -
Helpful -
Hug
3 Reactions@kathleenlp same here after the Ciprofloxacin fiasco my doctor gave me Amakacin IV ,AZITHROMICIN, RIFAMPIN, and Clofazimine.
But he gave me 200mg of clofazimine a day it turned me bright pink and completely finished of my gut by leaving pink crystals in my gut lining leaving my body eating itself for food (clofazimine enteropathy)
The doctor simply discharged me .
Be interesting to know what your dose of clofazimine was if you don’t mind me asking.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5084711/
Oh wow...sorry to hear that! Yikes. I was on 50mg 2x daily