Ask the Advocates: Alternative Treatments for CF
Cystic fibrosis (CF) affects more than just the lungs, and it is always important to follow the advice of your CF care team. However, alternative treatments can bring additional comfort and relief.
Once we learned that our CF community members will at times supplement their prescribed treatments and medications with some alternative treatments for CF, we wanted to learn more.
Ask the advocates
We asked our CF advocates: "What are some alternative treatments to help manage cystic fibrosis?" The responses ranged from supplements to therapy to herbs to CBD oil, and more.
One advocate did share, while they would like to try some alternative therapies, there is just not enough time outside of the treatment they are already required to do.
Read below to discover what our advocates had to share when it comes to alternative treatments!
Response from Ella
I have used a number of supplements and health foods to help manage and improve my health. Raw garlic and Manuka honey both have antibacterial properties and I take them with food, or mix the honey into my tea in the mornings.
An alternative inhaled therapy I started a few years ago is inhaled Glutathione which is a powder I mix with hypertonic saline and have found it to loosen mucus much easier and have not gone a single day without it since starting.
Response from Katelyn
I typically stay true to the course regarding my treatments to help manage my CF, but I do try to keep my mind open.
For years I have seen a therapist to help me manage the psychological effects of living with CF. In addition to that, I take supplements to help with joint pain, which is caused by the inflammation from having CF.
CF doesn’t just affect one aspect of my life and so to approach it more holistically has helped me manage the ins and outs of the disease.
Response from Janeil
Over the years, I have tried a lot of alternative treatments to help manage CF. From supplements to herbs and light therapy to massage, unfortunately nothing has blown me away in terms of results.
I am not trying to knock alternative treatments because I think they can have some benefits.
However, I find it really difficult to fit in my normal treatments and medications that I know help me without adding in other therapies as well. There’s just not enough time, headspace, or energy in a day to give alternative treatments the chance they deserve in my case.
Response from Nicole
I have always been intrigued by alternate treatments to help manage CF, but I have usually been too cautious to solely rely on them. I trust science and the medicine that has kept me healthy enough up until this point in my life - 39 years of relying on prescribed medications and treatments seems to have worked for me.
I am not one to rock the boat if it seems to be working.
I have tried CBD oil, recently though in helping to manage some anxiety and stress due to the pandemic. I was struggling to get a good night's sleep when the world shut down. My kids were pulled from daycare and my husband, and I were still working full time- just now from home. My CF care team actually recommended it and because I trust them wholeheartedly, I did some research, ordered it and gave it a try.
It did help keep me calmer at night and I ended up sleeping better. I am not certain I can fully attribute my ability to start sleeping better on the CBD oil, but I think it did help at least a little.
Sharing is caring
We thank our CF advocates for their candid responses. Please share in the comments below any alternative treatments for cystic fibrosis you have found to help manage symptoms and side effects as well!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?