CF and natural options... ???

Nmw - I wasn't being hostile - I wasn't even upset. I was stating something matter-of-factly. I am sorry Purusha if you thought I was being mean. I was being sarcastic so I am sorry for that. I was just going to tell you when I saw that Nmw posted - but I was going to tell you if you strongly believe in something like this - why don't you present it to the Cystic Fibrosis Foundation in a manner that they might consider doing research maybe on the lungs of rats. You never know that if it is really tried maybe it is a possibility. I would not want it to be tried on a person though until we know what the result is. The CFF has a lot of money now and hopefully they are trying everything possible to save every life that has CF with every kind of bacteria. I was only being sarcastic, not really meaning anything against you Purusha. I welcome your new ideas as anything is a possibility.
 

Helenlight

New member
I agree with Nmw. I think that it's really important when you come into a forum with thousands of people who either have Cystic Fibrosis, or care for someone who has, you need to come in with a sense of humbleness for their experience, advice, and information. We have people coming to us all the time with 'cures', which turn out to be a load of bogus BS (and sometimes dangerous) when examined properly, so we are very wary when someone comes in talking about a 'miracle' medicine. There are hardly any medicines that can treat a variety of diseases and conditions with equal effectiveness. Something that helps cancer is not necessarily going to help someone with Cystic Fibrosis, because they are completely different things, with completely different effects on the body.

My advice would be to first of all, ask your friend to come here to express any concerns they have to the community here, we have lots of people with an excellent range of experiences and information to give. Is your friend asking for natural therapies or is it just you? Has your friend asked you for help?Second of all, educate yourself about Cystic Fibrosis as much as you can, so you start to have an idea of how it works and what kind of therapies are needed to help. Beware of anyone who says they have a cure-all medicine, especially if they are not an expert in that particular condition.

I know it's very easy to get excited about various therapies and medicines, and you want to do the best for your friends son. But it's not as easy as it might seem. If medications and therapies have not been proven to help, or that there is a question about their safety, it is wrong to experiment with them on a child.

Please feel free to ask others here about natural things they have tried, but it would be unwise to promote things here that are unproved, especially if you have no experience with Cystic Fibrosis. I wish you all the best, and again, tell your friend to come here if they want help with their son.
 

Helenlight

New member
Oh, and guess what? The link you posted 'mmswiki' is totally bogus! It is not a wikipedia page at all, but designed to look like one, which is a huge hallmark of a scam. This is the wikipedia page for mms: http://en.wikipedia.org/wiki/Miracle_Mineral_Supplement which shows a completely different story.

Please be very careful, and very sceptical about what you read, and pay attention to people who have real life experience, and extensive research in Cystic Fibrosis.
 

Aboveallislove

Super Moderator
Having read all your posts, I see 4 possible options.

1) You are a scamer feigning friends with parents with a child with CF to try to sell MMS to those on the forum. I doubt that, but if so they’re really isn’t much to say to such a despicable person.


2) You have friends who have a little one with CF and you care about them dearly and believe so strongly in MMS, that you decided to search for other "natural" products that could help those with CF. Some ideas were suggested, but with everyone saying MMS should NOT be used. Probiotics are another product with some evidence of help with inflamation and dha as well. But the doctor should always give an "okay" on those. And as a good friend you will share the information, including that MMS should not be used.


3) You have friends who have a little one with CF and you care about them dearly and believe so strongly in MMS, that you decided to search for other "natural" products that could help those with CF. But while your belief in MMS may be irrational, you are rational enough and care about your friends enough to not foist your belief on them. From your posts, I think the former is true. What you do with the information, however, will determine whether the later is also true. You may strongly believe in MMS, but you are not the parent of a child with a horrible disease with no current cure. You do not have the same desperation as a parent, especially if their child is suffering. They are extremely susceptible to promises of great results and cures. So if you care for them and their child, no matter how much you believe in MMS, you should not suggest it or push it. And if you have suggested it, you should share the information you have gathered from others affected by CF. DO NOT USE IT everyone said.


4) You have friends who have a little one with CF and you care about them dearly and believe so strongly in MMS, that you decided to search for other "natural" products that could cure CF. But you are so irrational that you truly believe the FDA and pharma industry are attempting to "keep" people from a cure, that you will try to convince these parents to use it with their child and ignore the dangers.
 

jaimers

Super Moderator
Purusha there is an entire forum on alternative medicine on this website that you may want to direct your friend towards. Lots of really useful information there about natural options that can be used in addition to the regular CF treatments. there aren't any natural treatments to completely replace all of the standard CF treatments but there are certainly things that other CF patients have found to be very helpful.

i have to agree with what everyone else has said that MMS falls into the "too good to be true" category. Every so often someone will pop up claiming some miracle product has cured them or will cure them and it's always a scam. Please try and research unbiased sources regarding MMS (some have been linked in previous responses) and truthfully evaluate the safety of this product. We are a very helpful and caring community but when it comes to people claiming miracle cures this ain't our first rodeo.
 

LittleLab4CF

Super Moderator
Ooh! I just looked up MMS as in Magic Mineral Solution? I hope I'm on the correct one. Having read the entire thread, trust me, you struck a nerve. Bad medicine is a hot topic and MMS is bad medicine. We can almost sense your rebellion against conventional medicine. It's not uncommon at a certain stage of early adults. I remember being very opinionated about a lot of things.

Historically humans have always had hopeless or desperate medical conditions. Even in our enlightened times, hucksters are abundant, some of them are well meaning but all of them steal from the most vulnerable of our lot. When you defend something like MMS so fervently, you'd darn well better be certain of the facts. Anecdotal evidence even overwhelming anecdotal evidence is not reliable. It is impossible to fully understand the thought process of loved ones who are consumed with saving a child's life.

By now MMS has been sufficiently discredited. If there is any doubt purchase some MMS and some beef lung from a butcher. I looked at the molecular structure and MMS destroys all living tissue, with extreme prejudice. What would one expect it to do? It isn't going to clean up mucus and correct cellular function. Antiseptics like bleach, or phenol kill bacteria and so will MMS but they also kill lung cells it comes in contact with. Bacteria grow back, lung cells don't.

If you really want to help your friends just be supportive, maybe offer to help out with housework or baby sitting. Give them this site to utilize as a resource and don't try to play doctor. They need the real thing. It was nice of you to try but CF is too serious to be distracting new parents with thinly supported unapproved chemicals that could waste valuable time at best. Before you mentioned MMS and the topic changed, some great natural things were suggested, share this with them.

LL
 

Purusha

New member
My post here is sincere as I explained... I am not selling anything, just gathering the info on CF...

Regarding MMS... this thing is for real, not a hoax... I know many people who were taking it and no one died or had any bad side effects from it... only good ones ;)

Here is another example how MMS can cure malaria

https://www.youtube.com/watch?v=Frw...st=PLKW_SZrzdHkflEBzK661ZmcmGndxag605&index=3

You say alternative threads like The Alternative-Medicine threads? I have yet to check this... should probably ask my questions there, sorry.

BTW, no apologies needed, I don't get offended so easily ;)
 

jaimers

Super Moderator
Purusha, no worries about where you posted! Yes the forum titled "Alternative medicine" should have a lot of information for you to pass on to your friends regarding natural treatments to complement the regular CF treatments their child should be starting. We wish them the best and are here if they need a place to connect with other CF families and patients.
 

LittleLab4CF

Super Moderator
Purursha, I am a sucker for most new ideas. So much so that I maintain a laboratory for testing the sorts of things like colloidal silver and Petro-Carbo salve. I've added MMS to my list.

I was one of those who went along with my friends taking Timothy Leary's advice to " tune in, turn on and drop out". I've had wheat grass smoothies and enough goat milk products to last a lifetime. That was way back in the days when cars didn't come with seat belts and alcohol and tobacco were advertised on TV. Around 1970 my generation of doomsday preppers invaded the Bitterroot Valley and built a Utopian community unplugged from the world and creating Co-Ops to provide organic ranching and gardens using the French Intensive Gardening methods to maximize the yield and quality as customers cut zucchini from the vine. Oh, it was heaven and so healthy. We needed 4,000Calories a day to cover the work it took to keep our Xanadu functioning.

I was sometimes immersed in that lifestyle but always kept one foot in the empirical world of science. In looking for something to support the community and get paid for it, I set up an all purpose laboratory and became the ad hoc standards and product safety service. I've tested the feeds and fertilizers to the final products. On occasion I ran bacterial analysis and such for everything from veterinary care to samples from the patients of holistic practitioners. There was very little we couldn't test including early TENS units. I tossed a lot of natural cures out and documented some astonishing unconventional cures. One example of a quack cure that is quietly used in conventional medicine today was an electromagnetic field device placed around a broken bone that substantially speeds the knitting of the broken bone.

Just like today, we had some bad ideas mushed up with some amazing and verifiable health improvement. It was a wonderful lifestyle that on that merit alone, the lack of stress cured stress related illnesses. It was colloidal silver that I hit my first serious questions about a natural product. I knew about silver from my grandmother (born 1900) and the medical argument that raged in her day.

I've actually built two digestive systems using artificial and natural organ components. Using natural sausage casing which is cleaned and dried small intestine and a hot water bottle, some clamps, a blender, chopper and a couple pumps and valves, I had an artificial gut that could actually digest food and extract the sugars, water, certain nutrients and amino acids. I used it as a tool for testing and a great prop for non scientists to understand certain processes.

What I am trying to drive home is in the case of MMS, unless you are a researcher or scientist with the actual knowledge to model a molecule and run test interactions with living tissue, you do NOT know anything in fact about MMS. The first thing you must understand is how to critically analyze data. Can you determine if all the cures are actually from MMS, doing staistical analysys to determine if the data confirms it's " the real thing". Do you know how to determine if MMS is carcinogenic? Mutagenic? Are any of the new chemicals formed by the interaction of MMS and living tissue carcinogenic or mutagenic? How does the liver and kidneys fare? I could go on but I hope my point is made. Evidence on YouTube was an embarrassment. Anytime a fairly simple chemical is attributed to cure a disparate range of otherwise unrelated conditions my BS detector goes off.

What happens when MMS is out of date? When is that? How do you store it, take it, when and how much do I need it for malaria? Denge Fever? Exactly how does MMS accomplish what it does? At best it is an antiseptic. People have been trying to take antiseptics internally for centuries. The mouthwash of choice in the day was Listerine. Mostly ethanol the carbolic acid antiseptic was the real selling point. Egads! It was like sterilizing a needle with a blowtorch, talk about overkill.

As a career scientist/engineer I am qualified to pick on MMS. The chorus of other contributors include some very qualified people who have been kind with their words. What I'd love to suggest is this. You're young and healthy, give it a try on yourself for a few months and get back to us. Make sure you nebulize or drink it according to the suggested strengths. If it is helpful it must also be harmless.

LL

P.S. I was making a point, please don't experiment with MMS. Have some cannabis instead.
 

LisaGreene

New member
Hi! Like many others, I am not against simple supplements- both of my teenagers with CF take vitamin D, calcium, magnesium, probiotics, and garlic. They also eat healthy foods, not just the "high fat, high cal" CF diet (they eat healthy fats and get calories in healthy ways, not just by eating junk). But I am concerned about the growing trends of replacing traditional CF meds with other things AND I am very concerned about nebulizing unproven things like oils, silver, etc.

Here is a link to a blog that discusses all of the different "remedies" that are out there to "cure" CF from selenium (Wallach), Regenocyte, essential oils, etc. Before using something (other than your basic vitamins and healthy eating), I'd suggest you browse through this site and read up on whatever you are considering. There are DANGERS to trying things that haven't been reviewed and tested with the scientific method. Just because something is natural doesn't mean it good. Just be very careful.

http://abreathofreason.com/2014/09/15/why-i-am-frustrated-with-western-medicine/
 
Lisa Greene or anyone who knows: I read some of the link you posted. I read under Essential Oils. It stated somewhere in there that tetracycline use can lead to resistant bacteria and it is also used in the veterinary field. My son was on tetracycline as a teenager. What does this mean?

Also recently the CF Roundtable published a paper: http://www.cfroundtable.com/2015/03...elp-cystic-fibrosis-patients-fight-infection/ It seems even though there is information out there that could potentially help people with CF that scientists are not working hard enough to actually help people that need it right now. I don't know if the CFF does not care enough to give money out to help fight some of these impossible bacteria or what but it is not getting done or done fast enough. We have known about CF since my son was 4 and even though there have been some advances they are not enough and not fast enough and when people get in desperate situations and are fighting for their life they turn to anything and anyone who can help them or promise to help them. I have even considered somehow grinding garlic up enough to make a liquid for inhalation if I ever had to. When people reach anywhere and everywhere and there is no answer and nobody that has invested money in research to help them and they don't have the kind of money to do that then what are people supposed to do but look into every possibility even if it proves to be of no effect or even worse, they sometimes have to take chances because there are not that many options.
 
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Hail2Pitt

Guest
I agree with the general consensus that you need to do everything your CF doctors tell you to do. They've dedicated themselves to treating and fighting this disease, they're smart as heck, and they want the best for us.

And, there is also a place for "natural" remedies in addition to your prescribed treatments, though the definition for “natural” seems to be wide-ranging. For example, I exercise almost every day to help clear out my lungs - this is a very natural remedy, and for me is of equal importance to everything else my doctors tell me to do. I’ve also found that eating a moderate-carb, very high-fiber diet controls my blood sugar issues and has helped to reduce my various digestive symptoms. While this is probably the only thing I do that is counter to my CF clinic’s recommendations, my nutritionist is cool with it since my weight is steady and it’s worked so well for me. In addition, I take various vitamin and mineral supplements, as without them I have chronically low levels despite all the fruits and vegetables that I eat. And, there are no doubt many other natural remedies out there that are beneficial and I should learn more about them!

But, as Lisa said, be very careful. If something sounds too good to be true, it probably is. Best case, you'll waste your money. Worst case, you might be taking something that is not entirely safe.
 
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Hail2Pitt

Guest
temple - Can you talk a bit more about the Frolov? I hadn't heard of it before, but I just checked out their website and it looks interesting. How often does your son use it? Can you see a difference in any of his symptoms, frequency of exacerbations, etc.?
 

ethan508

New member
Please be very careful with (or avoid) inhaled natural remedies. I stumbled on this blog that has some stories about nebulized oils leading to lipoid pneumonia which caused loss of lung function and death.
http://abreathofreason.com/2014/08/26/essential-oils-long-on-history-short-on-evidence/

The reason some things aren't researched is because researchers can't create a good hypothesis on how the treatments work based on the known properties of the substance. Or they can suppose that the known properties likely cause more harm (as is the case with inhaled oils, from the above link). I've done research studies on mechanical parts (lower stakes than medicine) and am always constrained by time and money. Out of thousands of materials I can use for a design, I usually get to study 8-10 briefly and 1-2 in depth. I have to pick the materials that are most likely to work, based on existing knowledge of the materials being studied. It does me no good to study an item with weak or with unknown properties, when a stronger candidate is available.
 
I understand all that Ethan but what would you do if you were in a desperate situation with no answers and nobody will research it because they can work on easier bacteria that can potentially be contained? The only thing left to do is pray and believe me I know the power of prayer but I don't know why some things happen. What would you do if you looked everywhere in every country and nobody had a clear answer and it seemed they were not even working on it? I understand how you would start looking for anything. I appreciate the words on making a natural remedy. I would probably never attempt that because of the danger. But I understand the plight of when you are in the midst of a battle for your life that you become desperate especially when something should have been found to work by now if they were really working on it.
 

jaimers

Super Moderator
I think for every drug that makes it to market that's helpful for CF specifically there are a lot more that they worked on that didn't work out or end up being beneficial. My mom worked in CF research at UNC for quite a number of years after I was diagnosed and I know that the researchers there worked their butts off on their various experiments and studies. I believe some of that research had significant impacts in the development of some of the treatments we have today. Discovering and developing new drugs is a long process--I wish it was faster too but nothing develops overnight.
 

Jet

Member
There is a quote by Edison that I think applies to CF research. "I've not failed. I've just found 10,000 ways that won't work." My center is also a research site and I know they're a lots of committed scientist and physicians working on new drugs and treatments. Unfortunately CF is extremely complicated but we've come along way. There is a place for alternative or holistic approaches. I find Yoga and supplements extremely helpful for me. As other people have said, before careful and don't abandon the doctors recommended treatments.
 

jshet

New member
My son has autism, and believe me if MMS was helping kids with autism, i would have heard about it. as far as your quote "MMS is helping the autistic children get back to normal is not only offensive, but has honestly infuriated me.
I understand you feel very strongly about MMS, i do not pretend to know anything about it, but please do not assess that there is a normal. There is only the preconceived notion that you have in your mind. My son is perfect just the way he is.

Please try to remember that when you refer to children with autism.
 
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lrs2015

Guest
I'm wondering myself. I have 1 yr old girl diagnosed at 2 weeks. Shes doing great at the moment. But I was wondering myself what type of homeopathic remedies I could use in conjunction with her current treatments from the clinic. Ya know give her the best of both worlds approach. The only thing I have been doing ( because I'm afraid she's till too small) is putting a lil bit of garlic in with her salt. I am no expert. But I did a lot of researching and gooogleing. And there's a lot of benifits with garlic. Helps lessen time on antibiotics. I'm thinking of trying this elderberry gummie vitamin mix. Elderberry is supposed to help boost the immune system and benefit the respiratory system plus it would be a plus+ if its git other vitamins in it as well. At one point in time elderberry was used to help treat illnesses before our wonderful benefit of the science and medical advancements we have today. Would love to know what others have done/ tried/ failed.
 

AlexisPerson

New member
Cystic Fibrosis is considered as lifelong inherited disease, which affects patient’s lungs and digestive system. It often causes pancreatic enzyme insufficiency, chronic respiratory infections, and lots of other complications. Early detection is the key to get good treatment of the disease. Doctors usually perform a sweat chloride test and direct genetic testing to diagnose the disease. Its natural treatment includes medicines, nutritional and respiratory therapies, exercise etc.
 
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