I've written that Bishop guy atleast three times, has never responded to me. GSH is probably great for us, the problem is in the recommended neb dosing. For me, they say I should be nebbing 6000mg a day. Each sapsule is 200mg (55mg of bicarb added) of buffered l-glutathione. So I would be nebbing 30 capsules per session, for 60 capsules a day, and 100 come in a bottle. The concentration of GSH in each sessions neb would be incredibly strong @ 30 capsules dissolved into 6mg of fluid? Or I could possibly have an added headache of putting 6 capsules per every 5 ml of fluid in for each individual neb treatment, 5 times before I could leave my house, not to mention that would be a tremendous amount of fluid in my lungs at one time. I weigh 208 lbs, so that's how much they say I should take. And i'm only going to get bigger at the gym.
Even if I only weighed 100lbs, that would mean 3000mg a day. I have no problem with doing the GSH, and they have good research backing that is very helpful, but man, that is just way too rediculous for someone to do. Now granted if it was guaranteed to cure my CF on this regimen at a genetic level or 100% make all symptoms go away full time as long as i'm on it, I would pay for it and deal with it, but of course, just like oregano oil, that isn't the case.
They seriously need (hopefully after the trials are done) to do something about concentration levels. Maybe after the trials are done some big pharmaceutical company will get on board and make a highly concentrated version, so someone of my size (or even the small people, their dose is still rediculous) can have the proper intake at only twice a day, with a reasonable aresol amount.
As per your question about having her neb the water soluble OO. Since she isn't a tiny infant, and she has so many bugs already, If it were my child and she was in this exact situation, and apparently she isn't getting better with conventional treatments, I would do it for my child. Now I am NOT saying you should do it because I said so, it is afterall your child and not mine. If I were you to play it on the safe side, i'd get the regular oil and tell her that you want to try something to possibly see if it makes her feel better. Tell her other adults have tried it and some have felt better. Tell her it will taste like crap, but the more she holds it under her tongue, the less she will taste it (I tell people to hold it under their tongue for about 10 mins, most of the substance has gone into the blood stream by then, then they can swallow whats left, but it will still taste nasty).
See if she is receptive to you stressing it's something worth giving a try. I'd say try that for a week, and monitor her to see if she has any negative side effects, like headaches our of the blue, or anything else out of the ordinary. If after a week nothing negative develops, ask her how she feels in general compared to before you guys started it under the tongue. If she says she feels the same or slightly better, continue for a month. Reevaluate after a month. Depending on what she reports and what you observe and how she feels, try and schedule another doctor appointment for a culture, PFT etc. If things are still the same, with no notable improvement, I would personally move to a facial sauna and have her do two or three treatments of deep huffing of just the oil + distilled water per day. Follow the same observations and self reporting as with the sublingual method. The inhalation of the oil via facial sauna is similar in unpleasantness to the sublingual method, but not taste. Do the same thing with the doctor culture/PFT wise. If still no notable improvement in how she feels or her culture, to me the only other course available would be to try nebbing the water soluble OO twice daily.
Remember, I view (due to her age and what lvl of CF she is currently in) the nebbing of the water soluble OO as a last resort for those who current conventional treatments haven't worked (like what happened with myself). She is 9 years old, which surely doesn't make her an adult, but she isn't an infant either. She has a lot left to mature physically, especially considering puberty is right around the corner. All kinds of changes (as i'm sure everyone knows) take place within a body during puberty, and to be honest, even though I know the components of what's in OO, and have looked into each one of them, while I have never heard of OO havent any relation to problems during puberty, there certainly haven't been anything reported (that I know of) where it was cleared for use during puberty.
It's a very touchy situation. As I said before, personally knowing what I know now with my results and others results from the oil, and knowing what her problems are, and if she isn't getting any better, if she were *MY* child, I would probably start her on the facial sauna develery method, and if no notable positive changes were noted culture/pft/feel wise, i'd move to the water soluble nebbing approach.
To me (and why I made the decision to try it on my own, with there never being any research background for it's inhalation), it all comes down to "How bad off am I now? Have they tried to treat my problem with most reasonable available conventional means? Does it help anymore? Givin what we know about OO, would it really potentially harm me more than what they are doing to me now with not much results? How long can I stay on this path of negative progression before the questions of using questionable supplements to treat my problem is out of the question due to my health?".
Of course the above are just my opinions, it's up to you to figure out what is best for her and to go with that. I personally knew I generally didn't have much to lose, so I went with it, and for me it was the right choice, but that doesn't mean it will be the right choice for everyone.
