CF and natural options... ???
- Thread starter Purusha
- Start date
Twistofchaos
New member
You can try natural options as an addition but they are never in any way a replacement for regular therapy and medicine.
There are no miracle supplements sadly but diet and lifestyle are crucial. (Which you could consider natural I suppose..)
Always aim to have the kid at a caloric surplus and CF'ers have long been kept away from fats but that does plenty of harm in itself so aim for as much fat as digestion allows (with plenty of enzymes) as well as a really high protein intake.
CF'ers need additional vitamines and especially vitamine D. NAC supplementation has a lot of benefits especially for CF'ers and it's safe for children.
Plenty of exercise.
There are no miracle supplements sadly but diet and lifestyle are crucial. (Which you could consider natural I suppose..)
Always aim to have the kid at a caloric surplus and CF'ers have long been kept away from fats but that does plenty of harm in itself so aim for as much fat as digestion allows (with plenty of enzymes) as well as a really high protein intake.
CF'ers need additional vitamines and especially vitamine D. NAC supplementation has a lot of benefits especially for CF'ers and it's safe for children.
Plenty of exercise.
Salty air (like spending a day right on/near the ocean) was a natural therapy that was studied and found effective. The general therapy (inhaling salt sprayed air) was converted to a nebulized treatment for those of us who couldn't get to the beach (hypertonic saline).
Percussive airway clearance or Active Cycle Breathing could be considered natural. Google around to find instructions and videos on these techniques.
I'd put a second vote for exercise. For some, this serves as an alternative or supplement to airway clearance methods. The one caveat being that some CF-ers have an asthma component that make this very difficult. I don't think shortness of breath and some coughing while exercising is atypical for a CF-er, especially for higher intensity exercise or beginners. But if stopping the activity or reducing the intensity doesn't stop the shortness of breath or the pain/tightness in the chest then there might be an asthmatic issue. For me this is remedied by using a bronchial dilator (like Albuterol) prior to exercise.
Also a second vote for diet. Increased calorie, sodium, and vitamin intake are needed. But diet changes alone might not help someone with significant pancreatic insufficiency. Px digestive enzymes will be needed in that case.
Lastly, hand washing and infection avoidance might be considered natural. Again google around (CFF.org is a good source) to find the recommended methods to avoid infections.
Percussive airway clearance or Active Cycle Breathing could be considered natural. Google around to find instructions and videos on these techniques.
I'd put a second vote for exercise. For some, this serves as an alternative or supplement to airway clearance methods. The one caveat being that some CF-ers have an asthma component that make this very difficult. I don't think shortness of breath and some coughing while exercising is atypical for a CF-er, especially for higher intensity exercise or beginners. But if stopping the activity or reducing the intensity doesn't stop the shortness of breath or the pain/tightness in the chest then there might be an asthmatic issue. For me this is remedied by using a bronchial dilator (like Albuterol) prior to exercise.
Also a second vote for diet. Increased calorie, sodium, and vitamin intake are needed. But diet changes alone might not help someone with significant pancreatic insufficiency. Px digestive enzymes will be needed in that case.
Lastly, hand washing and infection avoidance might be considered natural. Again google around (CFF.org is a good source) to find the recommended methods to avoid infections.
T
temple
Guest
Hi,
I have a 15 year old son with CF. From about 3 months old we have relied heavily on more 'natural' treatments. It wont replace normal therapies but should considerably lessen your dependence on them and overall give the child much better health. But its not a once off fix - it is a life long commitment to using alternative treatments wherever possible. I would recommend finding a very experienced homeopath - once who has experience of dealing with chronic disease - herbal remedies - again prescribed by an experienced herbalist can also be useful. We are also now using Frolov breathing device and there seems to be very good results possible but a child of 4 is probably too young. Bottom line - contrary to popular opinion our experience is that natural therapies can be a very valuable of you tool kit when dealing with CF.
Hope this helps
I have a 15 year old son with CF. From about 3 months old we have relied heavily on more 'natural' treatments. It wont replace normal therapies but should considerably lessen your dependence on them and overall give the child much better health. But its not a once off fix - it is a life long commitment to using alternative treatments wherever possible. I would recommend finding a very experienced homeopath - once who has experience of dealing with chronic disease - herbal remedies - again prescribed by an experienced herbalist can also be useful. We are also now using Frolov breathing device and there seems to be very good results possible but a child of 4 is probably too young. Bottom line - contrary to popular opinion our experience is that natural therapies can be a very valuable of you tool kit when dealing with CF.
Hope this helps
Twistofchaos
New member
No. There's no research showing any use for MMS at all and worse that it's quite toxic and dangerous. That's the worst kind of quackery and something I'd want to keep a young child far away from.
Cannabis is harmless but also not that effective. I'd probably wait with that till the kid is a little older..
Thank you for your comment. However I have to strongly disagree with your statement regarding the MMS
I have a friend who cured his lymphoma cancer exclusively with MMS and nothing else! There are innumerable cases where MMS is helping the autistic children to get back to normal (google Kerri Rivera)... then there are many examples when prostate cancer was cured with MMS and so on... I am taking it almost daily for better immune system for longer period of time and I am healthy like a bull! I am giving it to my kids and wife as well when they show weakened immune system and it helps! So I can say that I have full faith in MMS
Regarding the cannabis and children... I agree, it would be better to try other natural options first... except if we are talking about the CBD when we talk about seizures. CBD does wonders and gives no high effect. If cannabis would show any good results with CF there is also a way to reduce the THC psycho effect if used through the back door
J
jamest
Guest
I am 37 and have CF. My uncle died from CF at 17, back in the 70s. The only reason I've lived so much longer than he did is because of new and better drugs and medical treatment. Natural treatments were around back when he was alive - junk science like high-dose selenium - and they obviously failed him.
Natural remedies are in no way, shape, or form, a replacement for traditional treatments. CF has been around forever, and up until the 40s the life expectancy was a few years. Only after CF was classified and diagnosed, and medication and treatments were researched, did the life expectancy rise.
If your friends are looking to augment the traditional treatment methods with 'natural options', that's one thing. But if they are looking for BS home remedy junk science in lieu of ACTUAL treatment... just thinking about being in that poor kid's place makes me upset.
The only answer is, they should talk to a CF specialist. That's why I'm still alive - my parents were scared as hell that I was going to die by 17, too. So they took me to the doctor constantly, and rigorously adhered to absolutely everything the doctor said.
This. Amen, Jamest.
As others have said, supplementing traditional treatment with natural/homeopathic options is one thing. Using natural treatment in lieu of all the modern medicine (some of them actually are natural as was pointed out) we have is quite another story.
Wishing the best of health to the little guy!
Autumn 34 w/cf
Twistofchaos
New member
Thank you for your comment. However I have to strongly disagree with your statement regarding the MMS
I have a friend who cured his lymphoma cancer exclusively with MMS and nothing else! There are innumerable cases where MMS is helping the autistic children to get back to normal (google Kerri Rivera)... then there are many examples when prostate cancer was cured with MMS and so on... I am taking it almost daily for better immune system for longer period of time and I am healthy like a bull! I am giving it to my kids and wife as well when they show weakened immune system and it helps! So I can say that I have full faith in MMS
The problem is you're drinking bleach. Please stop doing that.. PLEASE don't give it to children.
It does not work and it's VERY dangerous.
Scientific evidence? Zero. Vague anekdotal testimonials? Plenty. So conveniently turn around on science and the FDA then to make them seem like the bad guy? Yeah! Infact that's the main marketing strategy.
The FDA and scientists want power and so have been keeping you sick on purpose. They keep things from you that could really make you better. Like MMS! But our saviour Jim Humble (The wackjob behind it) has stood up for us all. We must fight for MMS!
If that does not ring your scam bell I'm sorry.
Neil Degrass Tyson has a quote that says something to the affect that when alternative medicines are studied and proven effective they are no longer called alternative medicine they are just called medicine. I like that the CFF has studied some alternatives (like salt spray and high calorie diet) and found them effective. I hope they continue to look into promising alternatives.
I'm also lost to how MMS could every be considered 'natural.' This is every bit a chemical. It would be like calling lead or mineral oil natural. Sure they come out of the ground. But it isn't in our nature to consume them (especially when the consumption is 'backdoor').
I'm also lost to how MMS could every be considered 'natural.' This is every bit a chemical. It would be like calling lead or mineral oil natural. Sure they come out of the ground. But it isn't in our nature to consume them (especially when the consumption is 'backdoor').
Found the link to Tyson's quote: https://twitter.com/neiltyson/status/208063372200128512
Obviously you don't know much about the MMS
It's not bleach!!! This is a common mistake people do when they actually don't know much about it but they talk like they know the science
believingjesus
Banned
Okay Purusha. I try to be open to new ideas so I read your link. How in the world do plan on MMS killing bacteria in the lungs of people with CF? If you swallow a pill or drink or whatever you do to take MMS how will that kill bacteria in the lungs? Are you considering that people with CF already have bacteria in their lungs? I don't understand your logic. Also, why would you give this to your family when it could potentially be dangerous to them? I believe that your friends should definitely have their child treated with treatments that are approved for CF and that have added so many years to the lives of people with CF (medicines, airway clearance techniques). Why would you be looking for your friends to do something else? I also believe they could add to their child's treatments any over-the-counter vitamins or minerals that are safe for human consumption (fish oil, turmeric, acidophilus, etc.). I do not understand your thinking just in guessing it is okay by the way you believe in it that it is okay for your family and your friends child that has CF. It makes no sense.
I am just gathering informations. It's not my decision in the end about how will parents help their kid.
Regarding MMS, you probably did not read what I said earlier... I have a friend who cured his lymphoma cancer exclusively with MMS and nothing else! There are innumerable cases where MMS is helping the autistic children to get back to normal (google Kerri Rivera)... then there are many examples when prostate cancer was cured with MMS and so on... I am taking it almost daily for better immune system for longer period of time and I am healthy like a bull! I am giving it to my kids and wife as well when they show weakened immune system and it helps! So I can say that I have full faith in MMS.
believingjesus
Banned
I did read that you wrote that someone said their cancer was cured with MMS. CF affects the lungs, pancreas, etc. There is no way for a person to take MMS inhaled into the lungs without it killing the lungs too. Idk if taking it when they are so young is good for a child in order to prevent anything getting in the lungs? but it honestly does sound like poison. I would love to believe that it would kill bacteria in the lungs but I know it can not without killing the lungs.
How do you know this? Has anyone tried and died yet?
believingjesus
Banned
Well Purusha - I certainly would not want my son to try it or anyone else I love that has CF!!!!!! Maybe if you yourself had CF we could let you find out yourself and let the rest of us know.
Believing, please take a few moments to calm yourself before posting, or just ignore the thread. Hostility helps no one.
Purusha, I believe that if MMS was the miracle cure you say it is, more people would be talking about its benefits. Even if every doctor said something against it, the voices of the people would drown it out. A wiki site is hardly a reliable site, and the actual website for MMS is not reliable either. They want you to buy what they are selling; of course they are going to say it's the best thing ever. From a few sources who are just as reliable as yours:
http://www.theguardian.com/science/2010/sep/15/miracle-mineral-solutions-mms-bleach
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm220747.htm
http://www.sott.net/article/213275-...tion-or-Trojan-Horse-Your-Body-and-DNA-Decide
Additionally, Canada, who has one of the highest (if not the highest) median age of survival for CFers banned MMS after a man nearly died from using it.
That said, there is absolutely nothing wrong with using a mix of natural and modern medicine ideas to treat CF. MY doctor is amazing and encourages me to try natural methods to help treat my CF. However, natural remedies are in no way the only way to treat a disease like CF. Are modern medicines any better? Not all of them. Personally, all the antibiotic use I've had to undergo is making a mess of my kidneys. However, if I didn't treat those illnesses, I'd be dead, natural remedies or not. I take vitamins, I go to salt rooms, I get acupuncture.
There is nothing wrong with researching everything a doctor suggests. I do. I research every single drug or treatment my doctor wants to put me on. I also research every single side of more natural remedies. You also need to search more reliable sources than Wiki sites. Anyone can make those pages say whatever they want. After one of the World Cup games, the page for John Brooks (I believe) was changed to say he was the greatest American since Abraham Lincoln. Wiki sites are never a reliable source for information on things as serious as what you are about to put in your body.
Purusha, I believe that if MMS was the miracle cure you say it is, more people would be talking about its benefits. Even if every doctor said something against it, the voices of the people would drown it out. A wiki site is hardly a reliable site, and the actual website for MMS is not reliable either. They want you to buy what they are selling; of course they are going to say it's the best thing ever. From a few sources who are just as reliable as yours:
http://www.theguardian.com/science/2010/sep/15/miracle-mineral-solutions-mms-bleach
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm220747.htm
http://www.sott.net/article/213275-...tion-or-Trojan-Horse-Your-Body-and-DNA-Decide
Additionally, Canada, who has one of the highest (if not the highest) median age of survival for CFers banned MMS after a man nearly died from using it.
That said, there is absolutely nothing wrong with using a mix of natural and modern medicine ideas to treat CF. MY doctor is amazing and encourages me to try natural methods to help treat my CF. However, natural remedies are in no way the only way to treat a disease like CF. Are modern medicines any better? Not all of them. Personally, all the antibiotic use I've had to undergo is making a mess of my kidneys. However, if I didn't treat those illnesses, I'd be dead, natural remedies or not. I take vitamins, I go to salt rooms, I get acupuncture.
There is nothing wrong with researching everything a doctor suggests. I do. I research every single drug or treatment my doctor wants to put me on. I also research every single side of more natural remedies. You also need to search more reliable sources than Wiki sites. Anyone can make those pages say whatever they want. After one of the World Cup games, the page for John Brooks (I believe) was changed to say he was the greatest American since Abraham Lincoln. Wiki sites are never a reliable source for information on things as serious as what you are about to put in your body.