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Crohn's Disease Forum » Your Story » Success Stories » Im a believer in herbs now! Herbs that helped me


 
11-16-2012, 10:46 AM   #61
muppet
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That full Boswellia article is in German, just by the by. That's... an impediment. :-)
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11-16-2012, 11:28 AM   #62
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I have not done much research on Boswellia as there are 10 or 20 other things I have going on now.

If you go to Google Scholar and type it in there are a couple of studies or articles (didn't read them) on it.

Much of the info I got on Turmeric is was also found using Google Scholar.

Dan
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11-16-2012, 12:05 PM   #63
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Hi I am new to this forum. I just had to jump in and say a few things. Some background on me is I've had Crohn's/Colitis for the last 16 years, so I know when I'm having a flare or things just aren't right. I've been through the majority of all the meds, pred, Lialda, Pentasa, Remicade, 6-mp, Humira and Cimzia, which i currently on, I am sure there are some others I have missed. I was seen at the Mayo Clinic here in AZ the entire summer, blood work, MRI's, Flex Sig Scope and a full colonoscopy. I had been dealing with a flare since March which was also make my tail bone sore and couldn't sit for any length of time. The MRI's showed nothing as far as the tail bone issue went, so they were at a loss on that one.

In the end they wanted to add Methotrexate along with my Cimzia, because Cimzia was obviously not working. I decided to take a stand and said NO, I need some time to research. So I started my research on Curcumin and found that a large study in Japan had been done and the UofA had received $1 Million grant to advance it's research into the efficacy of curcumin in the treatment of IBD.

I finally, after two months of research, can across a product developed by UCLA and Verdure Sciences. It's called Longvida. The studies done are for Alzheimer's Disease, but I said what the heck. Since the product has the highest absorption rates, which is one of the issues with curcumin. I contacted Sonya Cropper at Verdure Sciences and asked her for more information. Her statement is: Although Longvida is only 20% curcumin, it is 65x more absorbable than other forms of curcumin. Studies have proven this in vivo.

I wouldn't never say this has cured me in any way, but it has made by disease much more manageable and predictable. My tail bone soreness has went away and I can tell there is no inflammation, because lack of mucus and blood. Like I said I still have some issues, but they are minor and I can deal with this.

Thank you for reading! I just wanted to share and please remember to always do your own research.
11-16-2012, 12:09 PM   #64
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Hi mcontreras and welcome I'm so pleased to hear you're doing much better, congratulations!
I wouldn't never say this has cured me in any way, but it has made by disease much more manageable and predictable. My tail bone soreness has went away and I can tell there is no inflammation, because lack of mucus and blood. Like I said I still have some issues, but they are minor and I can deal with this.
Please be careful! A lack of mucus and blood in your stool does NOT mean there still isn't the possibility of some inflammation present. And even a low level of inflammation, over time, can lead to scarring and narrowing of your intestines and the complications that arise from that. So if you're not being closely monitored by your GI, please do so

Again, welcome!
11-16-2012, 12:20 PM   #65
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My stool shape and size also play a role is my "do I have a flare". they are nicely formed and not thin at all like they used to be. I do have a GI, but I think sometimes, even though he's a good, Dr he might be in bed with the Pharm companies.

I know I already have scar tissues from the years that I've had the disease and that's not something that can be cured, so I still do have some mild discomfort when I have a BM, but it's not nearly as bad as when I am flaring. I can only say that during a flare and having a BM feels and felt like childbirth contractions at some points. I can deal with mild discomfort, but childbirth contractions.. not so much.

I'll try to keep everyone updated while taking this. I've been on it for two months now and things have improved. Call it whatever you want a coincidence maybe, but whatever it is, I like it.

I still continue to do research on a daily basis, I think it might be my new obsession.
11-16-2012, 12:25 PM   #66
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We'd love for you to keep us updated! We have a thread located here where others are discussing the use of turmeric / curcumin that you're welcome to take part in, or start your own thread if you prefer that.

Please note that I'm utilizing a supportive tone when I say this as I don't want to upset you, but bowel shape also doesn't rule out the potential that you have some active inflammation. If you aren't completely comfortable with your current GI, find another one

And good for you doing your own research, that's wonderful. We'd love for you to share anything worthwhile that you find here on the forum. The more research, the better
11-16-2012, 12:32 PM   #67
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I am just going off my own experience through out the years and FOR ME, no blood, mucus and stool shape and size mean something and how I feel energy wise. I have been able to resume trail running again. My husband has noticed that I don't complain as much either so he know I must be feeling better.

I still limit my intake of sugar and breads and it helps with the weight too.

Not saying that I don't feel uncomfortable about my Dr., but I just have to take a stand and say this is my body and if I want to try other things I should be able to and not feel guilty about doing so. I don't want to live the "what if" life. I want to know that I did and tried what I could for myself.
11-16-2012, 12:33 PM   #68
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David is right. He's not trying to be contradictory, just lend you some experience. Stool shape, size, ease, and contents, definitely are indicators of our condition, but a return to normal bowel movements does not necessarily indicate remission and you have to be careful or you might learn this the hard way with strictures, fistula, and the resulting complications and surgeries.
11-16-2012, 12:42 PM   #69
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I am just going off my own experience through out the years and FOR ME, no blood, mucus and stool shape and size mean something and how I feel energy wise. I have been able to resume trail running again. My husband has noticed that I don't complain as much either so he know I must be feeling better.
They absolutely mean something! You're obviously doing REALLY WELL and I am so happy for you To use metaphor, you had a forest fire going on in your GI tract for awhile there. It sounds like the Curcumin came in with some water dropping helicopters and knocked things down beautifully. The problem with forest fires is, you need some boots on the ground to make sure there aren't any smoldering hot spots. Because, over time, those hot spots can lead to an inferno again.

You mention that you already have some narrowing and that narrowing is due to scarring. That scarring is caused by chronic inflammation. So if you do have a hot spot still, over time, the scarring can get worse and worse until a whole new inferno erupts.

I just have to take a stand and say this is my body and if I want to try other things I should be able to and not feel guilty about doing so. I don't want to live the "what if" life. I want to know that I did and tried what I could for myself.
I agree 100%. I'm not saying go off the Curcumin nor am I even saying take something else. I'm just saying monitor the disease in conjunction with a specialist to make sure you're in deep remission and so you can act quickly if that happens to change. Have those boots on the ground
11-16-2012, 12:57 PM   #70
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I am still on Cimzia by they way. So who knows maybe the Curcumin and Cimzia are working together.... I am sure there are still "hot spots" I just need to give the Curcumin more time to work. I've only been on it for two months. Just like anything else it needs sometime to work, well except pred, that stuff works pretty fast when your in a flare. It is sometimes the necessary evil.

I understand what your saying about scarring in all. I do have an appt with my GI in January. I wanted to hold off seeing him until I had some type of results from the Curcumin. I've been dealing with this for the past 16 years and I know when it's time to see the Dr. I really appreciate your concern, really I do.
11-16-2012, 02:29 PM   #71
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This is basically a tautology and it would be a logical fallacy to use this as an argument either for or against alternative therapies.
You bring up logical fallacy a lot but I don't think you realize that you yourself are using them.

You've showed us a slippery slope.

When somebody's kid dies because you told them to chew leaves

And you've built a straw man to attack

instead of tinfoil hat wearing and new age quackery.
Handwaving and scary noises don't detract from that fact.
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11-16-2012, 03:07 PM   #72
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Giannini cherry picking 2% of my participation in this thread to misrepresent my argument not only doesn't advance the discussion or help anyone, its intellectually dishonest and shows poor character.
11-16-2012, 03:22 PM   #73
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Peeping back in.


Speaking as a mother!
I just want to state the fact the parent's are not STUPID!
I'm fighting for my girl's future health and if any Doc, person or group said hers a leaf to cure your daughter aliments, I'd laugh and walk away. Most would!
Just like most parents know that over-medicating their kids is not good and would say no!

Our choices of these hellish decisions is hard enough but we as parents just like Muppet knows (read your girls story, AMAZING and both girls are cute as a bug) are ones that have to be made. I believe whatever choice we choose to make is and will always be more research then most because we make these decisions for an innocent child.

So to make parents who might come here in disappear and desperation to be ......unschooled to make the call is....... wrong and insulting.
Now I like Muppet but I don't agree with him on a lot of his view points on this subject but now reading his girl's story; I see where he's coming from.
I will do my research on how best to help Grace through or over what's ailing her. If that's natural...good, if meds than fine also.
I would and most parent would never try to put their children in danger.


I'm just saying don't treat parents like idiots. Our kids do that enough!
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11-16-2012, 03:23 PM   #74
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Interesting thread and opinions. So I will give my two cents worth...

I have no issue with any path someone chooses to follow provided the discussion remains respectful.

I hear your concerns as a parent muppet and I also hear the concerns of those that are dealing with this as the sufferer. At times I have cringed at advice given on this forum and that cringing has encompassed both traditional and non traditional methods of treatment. I personally am adverse to having either route touted as the one and only way of dealing with this disease.

To me, no matter what the disease, it is never as simple take x and y and all will be magically solved. I would hazard a guess and say all disease, to be treated in an efficient manner and to achieve positive outcomes, requires some soul searching and change on a person's part. That change may include diet, supplements, exercise and so on and it matters not how that change was effected but that it is a contributing factor to well being. So with that said I am one that, at present, believes in a blending of treatments.

I would be lying though if I said I didn't want to believe that the all natural route was the way to go. I wish with all my heart that it was but I am fearful of what this disease is capable of so I look to traditional medicine to allay those fears. Both of my children have had a severe and uncompromising journey and it is difficult to let go of what saved them even though I hate and fear it too.

Due to the experiences I have had there is one aspect of this disease in particular that I am wary of and that is disease that is untreated or under treated. Inflammation that is left to simmer away is an insidious and dangerous thing and no matter what course you take my advice is to always ensure that you remain vigilant in monitoring what is happening with your body. The physical signs that you see yourself are but one way do this but they must be backed up by clinical evidence in the form of tests and scoping.

At the end of the day...always keep an open mind and be honest and true to yourself. No matter what treatment you are on, traditional or non traditional, do not be blinded by dogmatic belief and be prepared to change tack if things aren't going according to plan.

Dusty. xxx
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11-16-2012, 03:27 PM   #75
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Leave it up to Dusty to be the voice of reason and ruin the party!

Darn you Aussie!!!


No one says it like Dusty
11-16-2012, 03:31 PM   #76
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Of course we'd all prefer to believe that natural remedies that aren't scary lab created chemicals will someday be the best remedies. Unfortunately aspirations don't cure scarred up colons, though. It's important to maintain some reasonable degree of objectivity.
11-16-2012, 05:04 PM   #77
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I have no preference to treatment. It is all risk vs reward.

I have used the most obscure treatments along with the most standard ones.

I have both suffered and benefitted from both.

Weight everything for your given situation. It is about all it boils down to

Dan
11-16-2012, 06:08 PM   #78
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Giannini cherry picking 2% of my participation in this thread to misrepresent my argument not only doesn't advance the discussion or help anyone, its intellectually dishonest and shows poor character.
Are you kidding? You just did the same exact thing in your last post to me. But I'm not allowed to do the same? That sounds like a logical fallacy in itself or is that just hypocrisy?

No what doesn't advance the thread is the insulting comments like "tin foil hats".

Coming into an alternative therapy thread poking fun at alternative treatments and insulting the efficacy doesn't advance a discussion and absolutely shows poor character.

I was pointing out that you were contradicting your own self as constructive criticism. No need to feel like you are backed up against the wall and have to throw out more insults.

That is all, I'm not going to go on any further... you obviously have your ideas, I have mine. Let's leave it at that before things get ugly.

Gianni*
11-16-2012, 07:54 PM   #79
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"My opinions are as good as your facts" is not any more valid here than it ever has been anywhere else. You can go on the longest diatribe you like, but until you cite a single credible, peer-reviewed, corroborated source, you've got nothing, folks. Stop telling people to put their kids on this crap. You're dealing with people's lives, and you need to stop peddling superstition and ignorance to people who don't know better.
i agree with you that no one should try to turn people away from drugs that could help them.

But i disagree that individuals observing the world around happening in real time, are unable to make good and true observations about how the world may work and that only academic institutions are priviliged with supreme knowledge, this is not the case. I believe all testimony has value, whether it be one from an expert scientist, or that of a novice, but i will put more weight on an expert scientist. expertise comes with first hand experiance, which we all have,so we all have some degree of expertise.

we should all share our experiances and observations, but note that the anecdotal claims and casual observations are the least reliable when compared to knowledge gained through the scrutiny of scientific method.
11-16-2012, 08:41 PM   #80
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You can't maintain a Crohn's remission with herbals. It's fantasy. Sorry. No well corroborated study supports this.

I'm glad you've had such a long remission, and maybe your condition is just mild which is also a godsend, but preaching to people that they should go off their meds even gradually in pursuit of this nonsense is irresponsible.

I agree that diet is a major component and that a remission can even be maintained with diet, to a point. For some longer than others, and for a very rare few maybe indefinitely.

If you want to advocate for this sort of thing, you should post peer reviewed study, not self help books, as sources.
funny thing about the scientific world is, traditionally they only build upon previous research/reports/testimonys within their own community, and are likely to be unaware of any benefit of herbs. scientists are not going to make observations on how crohns responds to certain herbs, but today things are changing. These reports are more likely to come from people with the disease themselves that are trying these herbs/plants/foods etc. we as a community, much like the scientific community, can attempt to confirm these reports ourselves with a well designed experiment, we are not completely at the mercy of the acedemic institutions.

you are implying that scientists are highly likely to have observed these relationships, its actually very unlikely they would know these things. someone living with the disease may have an advantage by having an in vivo model of the disease in its natural state, something scientists wish they had. its actually not even a model of the disease, its the real thing!! scientists are usually limited to analogous models like mice and rats and cellular activity in un-natural environments like in vitro dishes and models, which can at times be highly inaccurate, and not fully representative of how these cells behave in their natural state.
11-17-2012, 08:09 AM   #81
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Self observations are riddled with problems. For one, you're not controlling for all variables, in all likelihood (it's extremely difficult). Two, you have an unquestionable bias. Three, you are a sample size of one.

To say that there is no such thing as novel research is to demonstrate a severe ignorance of the industry. If you want to try out alternative stuff, again, as I've said many times, go for it, but don't conflate your amateur, self-directed, self-help efforts with research to the detriment of newcomers who might not know better. That's dishonest and irresponsible.

And demonizing medical research is horribly counterproductive. People are out there working on your behalf to beat this and other terrible diseases and to undermine them with ridiculous criticisms is terrible. Is the pharma industry perfect? Certainly not. Are researchers conspiratory morons with blinders on and their hands out for kickbacks? No, and painting them that way is a great way to cost them philanthropy that may one day result in a cure for your disease.

And no, I never implied that lack of research means lack of potential. Anywhere. Not once. You are projecting that onto me. Of course some of these herbals may be the basis for novel treatments for Crohn's. What I'm saying is that in the absence of formal evidence, it's irresponsible to recommend them to new or uninformed patients for treatment. Why this distinction seems to be lost on some of you I'm not sure. I suspect it's down to the fact that you are rabidly defending your life choices without really understanding what I'm saying beyond that it's criticism, which is really unfortunate.
11-17-2012, 02:54 PM   #82
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. Are researchers conspiratory morons with blinders on and their hands out for kickbacks? No,
I'll say this once again, I did not say, I am not saying this, and I will not say this. Once again you are building a false straw man to attack... How bout actually talking about the previous discussion instead of adding your own new twist to each post?

may one day result in a cure for your disease.
Pharmaceuticals will never release a cure, I hope you realize that.



If you want to try out alternative stuff, again, as I've said many times, go for it, but don't conflate your amateur, self-directed, self-help efforts with research to the detriment of newcomers who might not know better. That's dishonest and irresponsible.
You talk like newcomers are extremely naive and lack the investigative powers and the intellect to make decisions for themselves. You are not hearing the overwhelming support that many people give towards alternative treatments and that holds tremendous value and I don't need a columbia med peer reviewed study to tell me the efficacy of that. No one in this disease process makes decisions lightly, and I believe that's what you think is going on. These are victims thrown into a disease process that has scared them and to think that they are just going to choose the easiest treatment or that they won't use investigative knowledge to figure out what treatment plan is best for them is insulting.

We provide knowledge to share on this forum, and with that knowledge comes the endowment for individuals to choose the best treatment plan for them and often that means it will differ from ours. Is that wrong? Absolutely not. If everyone did the same deep medical route or even the same alternative route we wouldn't have diverse pool of knowledge that would give newcomers a perspective from each angle. I don't think giving newbies different perspectives is dangerous at all, but rather gives newcomers a better sense of what they might choose to do, gives them hope, gives the drive, and gives them better know-how to then share their knowledge with the rest of us. You may not listen to these new pools of knowledge but then you are missing out on the invaluable aspect of this forum.

Gianni
11-17-2012, 04:44 PM   #83
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I'm not saying everyone is naive. I'm saying that if you are going to hand out information in the form of advice, you have a responsibility to couch it in objectivity and full context, otherwise you shouldn't be giving it.

You really need to chill out Gianni, you have a major chip on your shoulder and it colors your interpretation of what I'm saying. It's extremely unproductive and you seem to be deliberately tying the conversation in knots, which doesn't help anybody.
11-17-2012, 04:45 PM   #84
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11-17-2012, 05:09 PM   #85
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Think how long we can make this thread go if we start bring in charts?

Now to the wonderful person that wrote the thread
( ya know the the one written about natural healing).
I hope you know we value your opinion and
hope you keep posting on this forum.
11-17-2012, 05:21 PM   #86
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I'm not saying everyone is naive. I'm saying that if you are going to hand out information in the form of advice, you have a responsibility to couch it in objectivity and full context, otherwise you shouldn't be giving it.
No one is going into Remicade or Humira forums giving advice to stop their treatment and pick up a herb. If you look at the original post, strict information is being given along with personal experience. This information and personal experience is still valuable, is anyone going to read this, drop their meds and pick up a herb in an act of passion? Of course not, but you make it sound like you think people don't put the proper research in backing their decisions.

You really need to chill out Gianni, you have a major chip on your shoulder and it colors your interpretation of what I'm saying. It's extremely unproductive and you seem to be deliberately tying the conversation in knots, which doesn't help anybody.
I think you are reading my posts wrong. The unfortunate thing about text is you can't capture the poster's emotions. My last post was not intended to portray anger in any way (at least not the bottom half).

While yes bickering back and forth does not advance the conversation neither does undermining posts with crude remarks and putting words in other people's mouth, that I do not appreciate.

I appreciate your desire to impart what you believe is right, and I know your heart is in the right place but I think the way you go about it comes off as agressive and demeaning to others and I think we can both agree that is not something newcomers want to see in a forum that is supposed to show support first and foremost.

Gianni

Last edited by Gianni; 11-17-2012 at 05:39 PM.
11-18-2012, 01:02 PM   #87
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Pharmaceuticals will never release a cure, I hope you realize that.
This is paranoia. Many diseases have been cured or wiped out, and by pharma companies.

While I fully understand where this sentiment comes from, and I DO believe that medical research should be publicly funded for many of the reasons that drive this sentiment, I do not believe that even billion dollar pharma companies could successfully snuff out the work of researchers who found a cure.

Crohn's is simply a very, very difficult thing to cure. It's built into our genetics. It's very very difficult to alter the mechanism of Crohn's without serious consequences. We're not really at the point of routine genetic therapy for humans yet, but we will be.

The trials right now testing chemotherapy followed by stem cell transplantation are pretty damned promising.
11-18-2012, 06:40 PM   #88
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Muppet and others on this thread,
I am an expert in, by all definitions of the word, healing. I have been working with disease, and the living and dying, on a daily basis, for over 17 years. It is my expert opinion that when one is adamant about convincing the world to agree with him/her, when one feels the need to control the thoughts/feelings/ideology of others, it causes stress. The stress is created in the body and mind of everyone involved in the conversation and, unless there is a healthy avenue of release for that stress or an alleviation of that stressful situation, the stress can cause any number of complications in a disease process.
Disease, or dis-ease, is called such because it is, primarily, caused by stress, which has as much affect on disease as environmental factors. There are several scholarly articles to support my statement...you may search on "stress and disease" for them. Here is one... http://psycnet.apa.org/psycinfo/2009-02126-000/
My concern, here, is that, as a new participant to this forum, I have found my reading of this thread as, particularly, stressful and, even, hateful. In healing any disease, it is always my recommendation to remove yourself from as many stressful situations as possible and put yourself INTO as many supportive, loving situations as possible. This will ALWAYS help facilitate healing. In a disease as chronic as Crohn's, stress is a HUGE factor. (I know I'm not telling most readers, here, anything new.)
All I'm saying is, hey folks, can we temper things down here and, possibly, offer support for one another, without forcing our opinions on others? We are all here to offer information and opinions. Let's respect one another, honor one another and bring the stress levels down to a hum. Please. And a thank you, in advance.
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11-18-2012, 06:56 PM   #89
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Very well put clwisehart!

Glad to see you have returned. I'm very intrigued by your profession and many on here are.

Feel free to post a thread on some of your knowledge you've gain on IBD through nutrition and healing.

I can't promise but I would hope that "some" will behave themselves.

This is not a typical thread!

Also we have a wonderful Parents forum for you to post you child's story.
Looking forward to hearing it.
12-03-2012, 09:25 PM   #90
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Reading this thread, I understand where Muppet us coming from in terms of pseudo-science but I also believe that Gianni is right to be concerned about the financial interests of doctors pharmaceutical companies and the FDA when it comes providing the best care rather than the most profitable.

I think what needs to be said is the standard that Muppet is demanding, peer-review, FDA approval etc. is unlikely to happen when it comes to herbal remedies themselves (rather than a synthetic analog) because it is unlikely that it will ever be in any companies financial interest to pour money into clinical trials and FDA approval to prove that an already easily accessible herbal remedy is an effective treatment for a disease.

This means that, if there are such effective herbal treatments, our best basis for determining which they are is public aggregates of anecdotal evidence such as this forum.

Obviously, one person's story is useless to this end, but a hundred people corroborating that some substance reduces symptoms is meaningful and can be used as the basis of a valid inference that it would be effective on oneself. The knowledge isn't as conclusive as peer reviewed studies but its still good.

I agree that people should not forgo standard medical treatment in favor of a purely herbal remedy (at least not forgo standard medical monitoring), but I also think that this does not mean that well intentioned advocacy for such methods should not be stifled or admonished. This IS the place where we can get the best information about alternative methods because the memberships interests are primarily concerned with providing support and education, and doctors certainly won't provide such information. In the end I believe that poss such as these do far more good than harm.

So anyway, my point is that I understand Muppet's concern, but I believe they are misplaced.
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