<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Sakem</b></i>
Glad you are doing so well......I think supplements can be harmful sometimes to CFers. Too much of anything, is not always the best. Plus with supplements, being unregulated, I;m leary of putting all this stuff in my body....even NAC, no one knows for sure if this is harmless, or could too much be the cause of streaking in lungs</end quote></div>
I agree. Antifreeze is also dealy if someone ingests it, or lets their pets ingest it. But I hear it works great in your radiator. The point is, nothing I have ever advocated is a "Hey man, go get this and do this and you will get better". The world of supplementation is so deep and detailed, if you just run out with a limitless credit card and buy then take everything you have even remotely heard might help you, well you will be broke and more than likely harm yourself, and possibly kill yourself.
The internet is like a giant park bench where an unlimited amount of people sit down and give their opinions, and many of those opinions can either harm someone, or kill someone. I have actually seen threads on another forum that advocated the tooth benefits of trying to bite live round bullets in half...
The one thing I have *ALWAYS* said, is to do your own research, follow the properly accredited institutions that have investigated a certain substance, and above all else, after educating yourself knowledge and research wise, go with your own common sense/gut instinct. If you properly look into something that someone else with your affliction has tried and has shown positive results, and at the least non negative results, it's either a "Why not?", or a "There seems to be a potential here that could benefit me. There is enough risk eliminated, should I try it?".
Here is what you have to look forward to with CF and ONLY traditional therapy: A never ending assault of antibiotics, eventual bacterial resistance, and due to that aspect, accelerated lung degradation and a shorter lifespan.
Doctors aren't stupid, contrarily they are extremely intelligent. The problem is, they are only taught one angle of dealing with any health problem (I am refering to conventional doctors here in the states). The FDA also requires funding in order to test something for a positive or negative impact. I annoyed several people at the CFF to try and scrape up some funding to look into any potential benefits of oregano oil, either sublingually applied or inhaled (I'd be happy with either). The sad fact is, they only have enough money to allocate resources to something that has a very strong chance of showing a strong positive payout. You have to realize there are countless substances like herbs and natural chemical compounds that make a common sense reason to possibly help us (very strong anti-inflammatory, anti-bacterial, and substances that stimulate over all health). It would take what we are spending in Iraq x 1000000 in order to properly evaluate every possible substance.
I don't advocate a "me too" line of thinking. There are CF patients who have little lung function left to possibly destroy if they are wrong with supplements. On the flip side, to play devils advocate, if I had heard a large amount of CF's were trying something and a good deal of them were reporting positive results over a period of time, and I had say 20% lung function, i'd take a "well i wont be around much longer any ways barring a transplant, who knows" approach. But that is just me.
I suppose the biggest part of what I advocate is knowledge, and for others to realize conventional approaches aren't the only approach, and are far from the only solutions. And I say this refering to EVERYTHING, not just dietary supplementation. That is just one small part of the puzzle. Be thankful that in our age, a person can take one subject matter (say something as apparently innocuous as table pepper), and research every single possible aspect of it, right down to it's genetic make up due to the internet. Previously you would have snake oil salesmen selling useless, or possibly very harmful items with the promise of healing/cures.
Do yourself and your loved ones a favor, don't tolerate only treating yourself with the sick/antibiotic nuke/sick/antibiotic nuke/resistance/move to other antibiotic/sick/nuke with new antibiotic/sick/nuke with new antibiotic/resistance/ routine. Conventional meds have their place, but there is SOOOOO much more to our care than that. You have to be proactive, and be flat out mean regarding the tenacity of your care. Realize that something as simple as proper vitamin and mineral supplementation can vastly help your overall health. Same goes for various exercise. Same goes for your environment. This response could be 10,000 pages long, but i'm sure you get my point. Even something as apparently helpless as massage has been shown to have an extremely helpful impact on our health and our frame of mind.
BTW I don't experiment on myself with weird supplements because I have a death wish...I know my health is higher than most with my condition, so I realize i'm the one most qualified to "peer into the rabbit hole" and see if i discover something that not only could help myself, but help others. The CFF or FDA aren't going to do it for us due to lack of funds and people. Those of us who can experiment, with a possible risk, should, and share what we found out positive or negative with the rest of us. I do my own research on something that at surface level makes common sense in some way to help us, I do more research, talk to others, and even more research. If after all initial assaults upon the substance or activity show no obvious large risks, I give it a go. So far, I have yet to have anything dire happen to me. If anything (judging from my test results and evaluation), most if not all of my hunches I have ran with, have either been helpful, or harmless.
Again, one more time...Don't listen to what I do or what I take...Liberate yourself with knowing there is more out there than what we are presented with in the western world, and what the pharm industry throws out there. There is much more for us out there. Let education and humility lead to dissolving the shackles of ignorance. It's not our fault, it's what we are told and spoon fed as good little consumers.
