A few quick updates to share: TauriNAC, colloidal silver, and gout.
TauriNAC
Firstly, I tried out TauriNAC, made by Planetary Biosciences (the company that makes Indeptra), at the suggestion of a CF acquaintance who said it helped her thin out her mucus. I tried it at a dose of 1-2 packets per day for 1 month and I didn't notice any effect on my mucus. TauriNAC did, however, cure my chronic painful leg cramps. At the end of an IV antibiotic round in May I developed chronic painful leg spasms as a result of an electrolyte imbalance (like due to IV antibiotics' diuretic effects). After using TauriNAC, which is largely an electrolyte mix, my cramps were pretty much cured. My sister (non-CF) was coincidentally having exactly the same problem from a different cause (she was pregnant) and I gave her the rest of my TauriNAC and it also successfully treated the cramps. So although it wasn't effective for thinning my mucus, I definitely think it's effective as an electrolyte mix. It's a great electrolyte mix because it does not contain calcium, and at the time I had excessive calcium in my blood so I could not take an electrolyte mix that contained calcium (most do unfortunately). Two drawbacks to TauriNAC: it tastes absolutely awful (the flavors are gross... WTF is a "purple lemon"?) but I mixed it with cherry juice and eventually got used to it; also each dose comes in an individual packet, which contributes an unacceptable amount of waste to the landfill. So Planetary Biosciences should eventually make a big tin with a scooper, not individual dose packets. An unflavored option would be nice too.
Colloidal Silver
Secondly, I used inhaled colloidal silver for about a month between two rounds of oral antibiotics. I used a 250ppm liquid colloidal silver by Silver Wings. I diluted 1mL CS in 2-3mL sterile normal saline and nebbed that twice per day at the end of my treatments, as I would an inhaled antibiotic. I believe it was about as effective at reducing my mucus load and infection as inhaled vancomycin is. I only did this for one month and did not repeat, so it is not an extensive study. But the great part about it was that it was easy to inhale, not irritating at all, tasted fine, and did not contribute to any additional coughing or inflammation. And it's not very expensive. I believe this is a very safe thing to try, and is a better alternative than inhaling essential oils for those with sensitive airways or prone to hemoptysis. I experienced no hemoptysis with this at all.
Gout
Thirdly, since that fateful IV round in May, I've been dealing with gout attacks on and off. Gout is an affliction whereby uric acid crystals (like teensy shards of glass made from purines derived from either meat protein or fructose) build up in the blood and then lodge themselves in the joints of the feet, causing really painful inflammation. I realize now that I had been having mild symptoms of high serum uric acid levels for many months before my first attack in May (random inexplicable aching in the joints in my feet and my toes). I thought maybe I was walking weird or that I got frost-nipped toes during the winter (I live in Vermont). But after my first gout attack it all made sense to me. During my attack, my symptoms were severe unilateral pain in the first joint of the pinky toe. Then it moved to the outside of my foot. The pain was so bad that I couldn't walk for a couple of days. I have a very high pain tolerance, but I'll admit it was bad. I just took ibuprofen for it. Lasted about a week. To treat it I avoided meats and drank tons of tart cherry juice. I did not take any uric acid lowering drugs and it eventually resolved.
High uric acid levels are significantly more common in CF people than non-CF people, especially considering our younger ages (gout is most common in middle-aged and elderly people who eat badly). Gout in CF is not entirely explicable, though possible contributing factors are taking pork-based pancreatic enzymes (which contain purines), compromised kidney and liver function, diabetes, chronic dehydration, and imbalanced diets. I had been eating a pretty high meat diet for the previous several years (Paleo-based) and it had never been an issue before. I am not sure what had changed in my body, but I suspect it has to do with reduced kidney clearance of the uric acid (as a result of concomitant bombardment with IV antibiotics), dehydration (as a result of IV antibiotics), and a change in gut bacteria that resulted in lower clearance of uric acid (certain species of gut bacteria are responsible for breaking down purine crystals in order to eliminate them).
This summer and autumn I got two more gout attacks, even though I had been eating a low-meat diet (like the docs tell you to). I got attacked in different places each time: in my first toe joints, sides of feet, and heels. So I finally did more research (always gotta rely on my own research!) and it turns out the purines from meat are not the only cause - fructose is an equally important culprit! In fact, one team of researchers says that fructose is the more important contributing factor to gout in the Western world, since intake of fructose (mostly through foods and drinks sweetened with high fructose corn syrup) has skyrocketed in recent years. I never eat anything sweetened with HFCS, but I was eating a lot of sweet corn from the farmer's market (very high in fructose), fresh local fruits, and sungold cherry tomatoes from my garden. All of these are high in fructose. Not only that, but I was relying on dried fruit to be my rescue snack from hypoglycemic crashes, and occasionally I was having Paleo-legal treats sweetened with coconut sugar or agave syrup (both of which are concentrated fructose). I had an 'aha!' moment when I had a gout attack immediately after eating an unusually large amount of dried fruit (actually... I binged on several 'Annie's' organic fruit roll-ups). Once I realized all this and cut back on fructose, I've not had a gout attack since. I also drink cherry juice daily, which is proven to reduce serum uric acid levels. I've increased my meat consumption a little with no issues. Occasionally I'll eat an apple/fresh fruit or some treat with fructose in it, but I never make it a habit. Sigh. But at least I can eat bacon again! I am diabetic, and I'm sure this contributed to how my body was inappropriately processing the fructose to become uric acid crystals. Fructose is harmful to the body in other ways (has to do with its effect on the liver) and diabetics in general should try their best to avoid it.
Firstly, I tried out TauriNAC, made by Planetary Biosciences (the company that makes Indeptra), at the suggestion of a CF acquaintance who said it helped her thin out her mucus. I tried it at a dose of 1-2 packets per day for 1 month and I didn't notice any effect on my mucus. TauriNAC did, however, cure my chronic painful leg cramps. At the end of an IV antibiotic round in May I developed chronic painful leg spasms as a result of an electrolyte imbalance (like due to IV antibiotics' diuretic effects). After using TauriNAC, which is largely an electrolyte mix, my cramps were pretty much cured. My sister (non-CF) was coincidentally having exactly the same problem from a different cause (she was pregnant) and I gave her the rest of my TauriNAC and it also successfully treated the cramps. So although it wasn't effective for thinning my mucus, I definitely think it's effective as an electrolyte mix. It's a great electrolyte mix because it does not contain calcium, and at the time I had excessive calcium in my blood so I could not take an electrolyte mix that contained calcium (most do unfortunately). Two drawbacks to TauriNAC: it tastes absolutely awful (the flavors are gross... WTF is a "purple lemon"?) but I mixed it with cherry juice and eventually got used to it; also each dose comes in an individual packet, which contributes an unacceptable amount of waste to the landfill. So Planetary Biosciences should eventually make a big tin with a scooper, not individual dose packets. An unflavored option would be nice too.
Colloidal Silver
Secondly, I used inhaled colloidal silver for about a month between two rounds of oral antibiotics. I used a 250ppm liquid colloidal silver by Silver Wings. I diluted 1mL CS in 2-3mL sterile normal saline and nebbed that twice per day at the end of my treatments, as I would an inhaled antibiotic. I believe it was about as effective at reducing my mucus load and infection as inhaled vancomycin is. I only did this for one month and did not repeat, so it is not an extensive study. But the great part about it was that it was easy to inhale, not irritating at all, tasted fine, and did not contribute to any additional coughing or inflammation. And it's not very expensive. I believe this is a very safe thing to try, and is a better alternative than inhaling essential oils for those with sensitive airways or prone to hemoptysis. I experienced no hemoptysis with this at all.
Gout
Thirdly, since that fateful IV round in May, I've been dealing with gout attacks on and off. Gout is an affliction whereby uric acid crystals (like teensy shards of glass made from purines derived from either meat protein or fructose) build up in the blood and then lodge themselves in the joints of the feet, causing really painful inflammation. I realize now that I had been having mild symptoms of high serum uric acid levels for many months before my first attack in May (random inexplicable aching in the joints in my feet and my toes). I thought maybe I was walking weird or that I got frost-nipped toes during the winter (I live in Vermont). But after my first gout attack it all made sense to me. During my attack, my symptoms were severe unilateral pain in the first joint of the pinky toe. Then it moved to the outside of my foot. The pain was so bad that I couldn't walk for a couple of days. I have a very high pain tolerance, but I'll admit it was bad. I just took ibuprofen for it. Lasted about a week. To treat it I avoided meats and drank tons of tart cherry juice. I did not take any uric acid lowering drugs and it eventually resolved.
High uric acid levels are significantly more common in CF people than non-CF people, especially considering our younger ages (gout is most common in middle-aged and elderly people who eat badly). Gout in CF is not entirely explicable, though possible contributing factors are taking pork-based pancreatic enzymes (which contain purines), compromised kidney and liver function, diabetes, chronic dehydration, and imbalanced diets. I had been eating a pretty high meat diet for the previous several years (Paleo-based) and it had never been an issue before. I am not sure what had changed in my body, but I suspect it has to do with reduced kidney clearance of the uric acid (as a result of concomitant bombardment with IV antibiotics), dehydration (as a result of IV antibiotics), and a change in gut bacteria that resulted in lower clearance of uric acid (certain species of gut bacteria are responsible for breaking down purine crystals in order to eliminate them).
This summer and autumn I got two more gout attacks, even though I had been eating a low-meat diet (like the docs tell you to). I got attacked in different places each time: in my first toe joints, sides of feet, and heels. So I finally did more research (always gotta rely on my own research!) and it turns out the purines from meat are not the only cause - fructose is an equally important culprit! In fact, one team of researchers says that fructose is the more important contributing factor to gout in the Western world, since intake of fructose (mostly through foods and drinks sweetened with high fructose corn syrup) has skyrocketed in recent years. I never eat anything sweetened with HFCS, but I was eating a lot of sweet corn from the farmer's market (very high in fructose), fresh local fruits, and sungold cherry tomatoes from my garden. All of these are high in fructose. Not only that, but I was relying on dried fruit to be my rescue snack from hypoglycemic crashes, and occasionally I was having Paleo-legal treats sweetened with coconut sugar or agave syrup (both of which are concentrated fructose). I had an 'aha!' moment when I had a gout attack immediately after eating an unusually large amount of dried fruit (actually... I binged on several 'Annie's' organic fruit roll-ups). Once I realized all this and cut back on fructose, I've not had a gout attack since. I also drink cherry juice daily, which is proven to reduce serum uric acid levels. I've increased my meat consumption a little with no issues. Occasionally I'll eat an apple/fresh fruit or some treat with fructose in it, but I never make it a habit. Sigh. But at least I can eat bacon again! I am diabetic, and I'm sure this contributed to how my body was inappropriately processing the fructose to become uric acid crystals. Fructose is harmful to the body in other ways (has to do with its effect on the liver) and diabetics in general should try their best to avoid it.
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