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Posted 6/9/2008 1:58 PM (GMT 0)
I am using plenty of suppliments and natural ways to enhance my health, but I was just thinking, are there things you notice that make you assume a "cure" is a scam? the two things that jump out at me are first-time posters who begin their message with something like "I have crohn's and I found a cure." we know most newcomers are scared, suffering, and looking for help (as lord knows I was!) the other scam-alert for me is websites with horrible spelling errors.

thoughts?

happy monday, yp

Posted 6/9/2008 2:52 PM (GMT 0)
Thats basically the same way I see things. I can always tell when its a scammer, especially when they tout they have a "cure."
Posted 6/9/2008 3:02 PM (GMT 0)
Have the same opinion prof. The thing is, when I ask my doc, whom I trust very much, he says," no dont try this or that," and has a good reason in all cases. I wish there were an easy fix it here but truth is I fear the power of positive thinking only goes so far. Some people may have had good results for this reason, or, they may not have had crohns at all. We all know how hard it is to Dx. Also the cost of most health suppliments are way over what drugs cost and we all know how high they are. Now about those spelling errors,,,,,,guilty,,,but then I'm not pushing any product...Just the best medicine, I have found,,,,,Laughter..
Posted 6/9/2008 3:16 PM (GMT 0)
hey Snip, I am the english prof with horrible spelling, so no worries there :)
I just meant those websites that you click on and they say WE CAN CURE YOU'RE CHRONS!
ack...makes me nuts!
Posted 6/9/2008 4:34 PM (GMT 0)
It drives me nuts when Crohn's is spelled wrong! I had nurse do that once, scared me she did not seem to know what CD was. I have seen some too good to be true websites when I was newly diagnosed. I found one that suggested to quit my meds and take aloe only. She also suggested to jump on a trampoline daily to help your guts get stronger. Heck if I did that I would poop my pants or throw up right away. I am not sure that one works but if it works for her then I guess I have no argument. Whenever a site tells me to go completely against my Doctor or against something I know would not work for me (example: all raw diet, raw veggies could really make me sick) then I ignore it. I also try to find a second or even third source that verifies the information. if there is none then I consider the info invalid (or not enough info for me to consider). Karen
Posted 6/9/2008 4:53 PM (GMT 0)
trampoline? that is too funny!
that is why I wanted to start this thread--there are so many scams out there, and especially when one is newly diagnosed we so want an answer; I hate to have our new members confused by folks trying to rip them off.
Posted 6/9/2008 4:57 PM (GMT 0)
For me I go by my gut instinct which amazingly hasn't been affected by my crohn's...

I know way back when I first came to HW I had just started with the bee propolis and because I had such quick results with it I was eager and very excited to share, and there were a few who were skeptical as to whether I was a rep selling the stuff which is totally understanding but I've been here ever since and with realizing not everything works for everyone (that's the biggest red flag, when someone says it will cure all) I've never tried to push it down anyone's throat (which would be impossible to do anyways) I just tried to encourage people (so long as they weren't allergic to bees) to give it a try in the hopes that others would find relief (which was the only thing I wanted to gain, helping others if possible)...

I still only talk about it if people ask about "natural relief" or if someone eles brings it up (like recently)...I've always felt the way I went about it was genuine but boy it sure brought out some of the heavy skeptics as to whether or not I was some scammer, I was basically understanding about it even though I was a little hurt because I was being sincere...that's why I say go by your gut instinct when these kinds of posts pop up...afterall, any long time posters here that came across something that worked amazing for them would most likely share with us all even if it sounded too good to be true and the rest of us would be more likely to believe them and even try whatever it was they were sharing...which is one of the key points to these kinds of boards, to help not to profit.

:)

:)
Posted 6/9/2008 5:24 PM (GMT 0)

Sniper said...
 Also the cost of most health suppliments are way over what drugs cost and we all know how high they are.

I disagree...especially for someone who does not have insurance, or does not have adequate coverage.  Remicade is very expensive.
Posted 6/9/2008 5:24 PM (GMT 0)
Yeah I hear all you guys, I have been there tried everything, but mixing "natural" cures and drugs are not a good idea. Somethings work against you but you dont know for sure what. They can sell anything over the counter and it is the consumers discretion on what you are buying. FDA doesnt regulate all "natural" or companies tell you what is NOT in there. If there was a cure, we wouldnt be online here. When you are in pain, and been in pain long periods you look for anything to help you. It is a "money hungry world" and we have to educate ourselves and wonder why we get suckered into it. I hate spam, and will do anything to get rid of them.!
Posted 6/9/2008 7:04 PM (GMT 0)
I get skeptical when something works on all diseases. I would understand if something claimed to help all autoimmune diseases or something in a similar category. But when it is touted as the cure to asthma, crohns, herpes, plantars warts, third nipples, etc. I get skeptical.
Posted 6/9/2008 7:31 PM (GMT 0)

Crohn's 4 ever said...
Yeah I hear all you guys, I have been there tried everything, but mixing "natural" cures and drugs are not a good idea. Somethings work against you but you dont know for sure what. They can sell anything over the counter and it is the consumers discretion on what you are buying. FDA doesnt regulate all "natural" or companies tell you what is NOT in there. If there was a cure, we wouldnt be online here.

I think that "cure" is the operative word. If natural products can help with symptoms, there can be some real benefits. if they are touted as a way to even get rid of a third nipple (thanks for the laugh, fitzy) then there is a problem.
Posted 6/9/2008 7:32 PM (GMT 0)

Sniper said...
 Also the cost of most health suppliments are way over what drugs cost and we all know how high they are.

Respecfully I have to strongly disagree with that statement sniper...I pay waaaaaaaaaaay less for ALL my supplements combined in a yr compared to one remicade infusion.

:)

Posted 6/9/2008 7:32 PM (GMT 0)

pb4 said...
... I just tried to encourage people (so long as they weren't allergic to bees) to give it a try in the hopes that others would find relief (which was the only thing I wanted to gain, helping others if possible)...

pb4,

I empathize with you completely.  I have tried to share my positive experience with Low Dose Naltrexone (LDN) and have gotten a lot of negative feedback (for the most part).  Judging from the comments of others, I realize that some people just do not have an open mind to new experiences.  I am sorry about that because I feel that if we seal ourselves inside a box...we will never "live to learn and learn to live."  I have an open mind and if I had known about bee propolis (that you mention here), I would have wanted to learn more.  In the past, I researched pig whipworm (Trichuris suis) with great interest, but decided not to go that route (along with biologics).  My personal choice.

Some have even called LDN "snake-oil" and I wonder where that idea came from.  Just because a treatment is used "off-label" doesn't mean it is a scam.  There is no one getting rich off of LDN.  There is a history of Naltrexone use (in high dose) but in the past several years research has been done treating various autoimmune/inflammatory illness with low dose Naltrexone (LDN).

Like you said, the only thing that I wanted to gain by sharing my experience, was to help people.  I admit, I am very excited to finally get relief from symptoms (since day one) and I am feeling better than I have in over 30 years.  Naturally, I want to share my experience with others who have suffered with Crohn's the way that I have.

Many people are under the misconception that LDN will only provide relief for people with "mild" Crohn's.  I would have to disagree since (before LDN) my GI felt the need for me to go on Remicade, I was in a lot of pain with inflammation and "narrowing," and was at high risk for stricture.  My pain is gone and I believe that my inflammation is gone also.  I can't wait to compare my testing restults (before LDN to after LDN) in July - to see if there is indeed a "difference" (from the relief that I have gotten I believe that there will be a difference).   All I know for certian right now is that I feel very good, finally.

If you (or anyone else) has an interest in learning more about my experience with LDN, please email be privately and I will be happy to discuss it with you.  I will be happy to share some websites of interest with you, so that you can research it for yourself.  Personally, I believe that the best resource is to speak directly to the people who have had experience with the "product of interest" (LDN).  I have been in contact with LDN users that are treating various (autoimmune/inflammatory) illnesses and find their (many years of) positive experience, hopeful.

Kindest regards,

Patti

Posted 6/9/2008 8:01 PM (GMT 0)
Sorry guys I should have been more specific about the cost statement. What I should have said is my insurance pays a lot for my scripts but pays nothing on suppliments. My wife is on a few and they were recommended by her doctor. They have helped her with the side effects of Chemo. But the insurance pays nothing for them and they are rather pricey.
I think I have the trampoline thing figured out. While bouncing up in the air you may catch a honey bee in your mouth thus getting a small dose of propolis.
pb4 My apology if my comments about bee propolis offended you.I do recall that first post. I have no doubt about your sincerity. Guess it is just that I kept bees for years and have tried propolis with no results. I am very happy that it works for you though. I can say that local honey has helped some people with certain allergies. Sorry not the store bought kind as it is blended from honey gathered all over. Local honey has local pollen that has been processed by the bees. I also had some pretty good results with arthritis pain relief from honey bee stings. Some bee keepers I know have the bees sting them each day. Two is about all it takes.
Posted 6/9/2008 8:52 PM (GMT 0)
You know its a scam if

"Chemical Free!"
"Miracle Cure."
"Lose 5 lbs in 5 days GAURENTEED!!"
"Works for Everyone."
NO side effects!!
Read my story.
Four easy payments.
Treats sexual disfunction, arthritis, gastrointenstinnal discomfort, skin problems, in grown toe nails and being just plain ugly all with one pill a day.

Sj
Posted 6/9/2008 10:02 PM (GMT 0)
I would have to agree to both sides.

I completely understand everybody who doesn't believe in seperate theories like, "I Cured My Crohn's" that makes complete sense. I trust the CCFA website and they boast Remicade, Humira, Imuran, etc. Which, a lot of people have gotten their life back because of this. However, sometimes those drugs don't work or produce other side effects. If anyone doesn't know, last week the FDA decided to do a Review of Remicade, Humira and Enbrel and the increasing risk of Lymphoma (they are starting their study with children). But, again I completely understand everyone's faith in the immundoluators. For me, Remicade gave me a reaction and my next step is Humira. I do know that Prednisone made a lot better while I was taking it. I encourage everyone to read about LDN (Low Dose Naltrexone) and the clinical studies being done by the University of Penn State. www.lowdosenaltrexone.org
this is reality you will read, not a scam

also, remember that websites with .org are more likely to be reliable that .com lol

I've only been diagnosed formally with Crohn's for 7 months. I suggest that anyone else familiarize themselves with all drugs effects and side effects. I'm not claiming to be an expert saying, this will work, this won't. Keeping an open mind is the best way to go and being informed will only help you.
Posted 6/9/2008 10:05 PM (GMT 0)

Sniper said...

pb4 My apology if my comments about bee propolis offended you.I do recall that first post. I have no doubt about your sincerity. Guess it is just that I kept bees for years and have tried propolis with no results. I am very happy that it works for you though. I can say that local honey has helped some people with certain allergies. Sorry not the store bought kind as it is blended from honey gathered all over. Local honey has local pollen that has been processed by the bees. I also had some pretty good results with arthritis pain relief from honey bee stings. Some bee keepers I know have the bees sting them each day. Two is about all it takes.

Oh sniper, no apologies necessary, I don't hold a gruge (maybe at the time I had issues with the negativity but that was likely some of the pred still in my system at the time, so if I was over-bearing and rude I apologize for that).

I am sooooo grateful for the relief I have gotten, as I've always claimed, not full remission for me but the way it has helped has kept me as sane as I am (don't comment on that LOL)...honestly with it cutting back my daily BM's in half (from 30+ down to 15), stopping all my bleeding and lower back pain (no more balling on the toilet with each and every BM) how could I not be excited about that and not want to share it with other sufferers in the hopes that hopefully some others would also find some relief (as the guy that I heard about it from said it's put him into remission and to date has kept him there).

Bees are incredible creatures there's no doubt about that but you gotta be some kinda special person to keep bees with all the work and risk involved...I wish there production of propolis, honey, royal jelly could have given you some relief from your CD because I know you've suffered alot and that saddens me as do all the CDers with severe CD do.

Funny thing, I have such a respect for bees now but I still run like an insane crazy person when I'm approached by one...it's quite a site actually LOL!

:)

Posted 6/9/2008 10:07 PM (GMT 0)
there~ishope I've dropped you an email :)
Posted 6/10/2008 12:38 AM (GMT 0)
I hate when friends or family see these scams and suggest you try it.. "you only have to take this product once to cure you..." It's nice that they look out for me, but trying to explain that these scam products are not the route to go can be tiring. Some people feel if it's on the market, it must work (or they wouldn't be allowed to sell it). I'm so glad there's a site like this so that I can find out other people's experiences with products. Plus advertisement of these products can "belittle" our illness in other's eyes. If there's a ready cure for the taking, (or what they think I can take to fix me up) then why am I suffering so? I must chose to feel lowsy!!

Bev
Posted 6/10/2008 12:58 AM (GMT 0)
pb4,

Thank you (in advance) for the email (contact)....I am unable to "check it out tonight" as it is late...but will look forward to reading it tomorrow...and will respond promptly. I hope you are well....as I hope... for all of "us." :o)

Catch up with you tomorrow!

Good night,
Patti
Posted 6/10/2008 3:13 AM (GMT 0)
Sounds good, thanks :)

I should have read this before I posted to you again on the "new LDN thread".

:)
Posted 6/10/2008 3:20 AM (GMT 0)
I don't think anyone is trying to make anyone else feel bad about a treatment that they're using that's working for them. I think, sometimes... this disease gets the best of us. Some people might get the sense that they're being attacked when someone insists on a treatment that works for them... It kind of makes those people think that this person thinks that they're not doing everything they can to get well... And that's not true. Nobody wants to put up with this disease. Nobody.

Anyway... There are quite a few red flags to look for when someone is pushing a product for this or that. Besides, the ones about claiming to treat a multitude of symptoms and having NO side effects (everything has side effects, even natural things)...


There's also:

"This is an ancient remedy, proven to be safe for thousands of years, blah blah blah..." -> Do you really want to trust this statement? Ancient does not always mean good or safe... I mean, think about what tools doctors used to use in ancient times. //O_o\\'...


"This is a brand-new formula, developed in secret..." -> Why is the formula being kept secret or anything about the product being kept secret? Medical professionals do not keep medical discoveries secret (debate me on this if you want, but you're going to have a hard time convincing me that all those medical journals out there are a figment of my imagination). It just sounds really suspicious...

And... the only evidence the pusher of the product provides that it works is all ancedotal... All quotes or stories from "real people" (you really have no idea if these people are real or not) that this product worked for them, and it will work for you, too.
Posted 6/10/2008 4:17 AM (GMT 0)

Celey said...

Anyway... There are quite a few red flags to look for when someone is pushing a product for this or that. Besides, the ones about claiming to treat a multitude of symptoms and having NO side effects (everything has side effects, even natural things)...


I strongly disagree with that statement based on my own experiance with bee propolis, it has no side-effects for me and it helped with a multitude of my symptoms, lessening daily BM's, stopping all my bleeding and lower back pain...I stand true to these things because that's been my experiance with it, I even stopped taking it for one day to see what, if anything would happen and the first thing that came back was blood.

:)

Posted 6/10/2008 5:59 AM (GMT 0)
Your own experience with bee propolis produces no side effects for you... That's great. It might be a different case for someone else, though...

Thus, it would have side effects, then, wouldn't it?
Posted 6/10/2008 11:53 AM (GMT 0)
bentwistle said... I hate when friends or family see these scams and suggest you try it.. "you only have to take this product once to cure you..." Bev, I get that too! My MIL was going to sell some miracle cure herbal remedy and the lady told her it would be good for me and I would probably be able to quit my meds. I right away knew it was a scam when I read the papers. it was a cure for so many different things! If I could take something to cure me I would probably pay several months salary for that!! I would be broke if I really thought there was a quick cure :) Karen
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