Guest post by Bryan Hyde – another patient at Tampa General Hospital. We met out on the steps of the valet area one day waiting for our cars to be brought to us like kings.
I am a 38 year old male with cystic fibrosis. My journey started 12 years ago when my PFTs were in the low 30s and I decided I was not going to go out with a whimper. I also told myself that I wanted to keep the lungs that God had given me for as long as possible. I decided to make researching my disease a second job and was determined take control of my life and its outcome. My research led me to one major conclusion that has directed the way I care for my body.
Controlling inflammation is key
My belief is that I needed to attack the inflammation like the Indians attacked Colonel Custer. I wanted to surround it and attack from all sides leaving no route for escape. In other words, I was searching for an integrated approach to reducing and/or eliminating the causes of inflammation in my lungs. Inflammation causes a negative feedback loop in the lungs of people with cystic fibrosis “inflammation begets inflammation.” Corticosteroids aid in the reduction of inflammation and inhaled Advair is usually prescribed to reduce it and comes with fewer systemic side effects than any oral alternative. In addition, scientists found that Zythromax taken at sub-micro inhibitory levels aside from its positive effect on pseudomonas it also has an anti-inflammatory action in the lungs. However modern medicine typically treats symptoms and not causes of disease, thus in addition to my prescribed regimen, I wanted to find a way to interrupt and/or reverse the causes of the inflammation cycle in the lungs.
Research on my thesis has led me to implement an integrated approach to this problem. Research has found that levels of glutathione, a vital anti-oxidant, are greatly diminished in the lungs of people with CF. However, taking oral glutathione is ineffective due to the fact that it is broken down too quickly in the gut to lower components not allowing for an effective dose to reach the lungs. N-acetyl Cysteine is a precursor to the production of glutathione and is quickly absorbed and converted by the body to glutathione allowing for a significant amount of this necessary antioxidant to reach the lungs. There is also evidence of increased oxidative stress in CF lungs, suggesting that reactive oxygen and nitrogen species may overwhelm the antioxidant defenses in the lungs. SOD (superoxide dismutase) is a cellular enzyme that acts as a free oxygen scavenger neutralizing it and reducing the oxidative stress that would otherwise occur. Any SOD supplement must have an enteric coating to allow it to bypass destruction in the stomach and pass directly to the small intestine for absorption.
As you can see my approach is to try and directly affect the causes of inflammation and not the inflammation itself. Imagine the fact that most CFers go years and years with the negative feedback loop of inflammation running unabated. I believe the goal should be to overwhelm the body with a strong antioxidant response through supplementation. Keep in mind that the process is three steps forward and two steps back until you eventually stabilize and maybe even reverse this viscous cycle. While I have only mentioned two supplements in this post, I personally take five individual supplements and one which is a synergistic blend of antioxidants and minerals designed specifically for people with cystic fibrosis and mal-absorption. If Fatboy agrees, I would like to continue to post until I have discussed all of them and to share the anecdotal evidence of my own experience.
Be proactive, get educated, and take control of your own destiny!
God Bless all of you and your families.
Thanks for writing this, Bryan! I’m going to check with Sue about me doing some of this (read the footer disclaimer, folks!) and see if it helps. It’s certainly logical. I’d say that 80% of my problems now are an asthma-like feeling and only 20% are ongoing infections due to new antibiotics for me, like Cayston and colistin. Yes, so far, I agree to feature you once per week until you get this information all out of your system as long as Sue doesn’t freak out about this advice apart from heeding the medical advise disclaimer. 😉