Patel Thompson, Jordan Rubin, and other self-cured IBDers as slick marketeers- thoughts?

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Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 6/4/2009 7:01 PM (GMT -6)   
I was just wondering about others' thoughts on those individuals who suffered from IBD and then are suddenly getting rich - or at least appearing as if they hope they will become so- on their healing protocols.  I can't imagine for a million years, no matter how much money I could get, profiting off fellow sufferers of a disease I suffer from or once suffered from.  I just don't get it.  Why didn't/don't these people just go to message boards or start an open source cooperative to share their stuff?  Don't get me wrong, I am a believer in strong (albeit not totally unfettered) capitalism over other economic systems hands down,  but I just don't get how anyone who suffers from IBD or another terrible disease and then feels they benefited from this or that protocol can live with themselves to ask someone to send them $60 for a ebook, much less to not share this info for free and keep their day job as opposed to devoting full time to being slick marketeers.  I know, taken to its extreme my thoughts would mean there should be no alternative practictioners say not practicing for free- but that's not what I am saying, even thougha I do feel most alternative NDs and MDs in North America are slick, but I am thinking specifically of the self-cured who then want to make a mint off their cure or protocols or at the very least, appear to do so by the sheer slickness of their marketing.  Mercola is probably a very good example too.  I'll end  the soapbox, but was just wanting to see others' thoughts.  Heck, at least spinach and sunflower seed guy or vit-e enema guy spread their belief for free (those things did zilch for me, I tried them... but I appreciate that at least they push the stuff for free- ditto for Elaine Gottschall - bless her- and the SCD- if there is one thing she was not it was slick!). 


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 

Post Edited (Probiotic) : 6/4/2009 6:05:44 PM (GMT-6)


Dr-A
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Date Joined Jul 2006
Total Posts : 2105
   Posted 6/4/2009 7:14 PM (GMT -6)   
I don't think it's wrong to have a product and charge money for it. I have a problem if someone says they can cure everything under the sun and try and charge you a ridiculous amount of money. There are lots of people out there that won't bother with something that is free because they put no value on it. Never got this, but you could offer something for free and no one would bother. Charge $50 and all of a sudden it has value to it.

The pharmaceuticals and most of the health care system is alot worse though, lol.

Mercola is great source for info, since he compiles stories from different media outlets. I just dont visit his store. I stick to the health blog.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 6/4/2009 7:42 PM (GMT -6)   
I hear you on the effect of something being perceived as being valueless if it is free. I certainly don't hesitate to spend more on a product that is more expensive if I feel it has value, and oftentimes something that is more expensive has more value. What I am getting at though is the slickness factor. Mercola, Rubin, Patel and countless others (I am not sure if Mercola falls into the category of a former sufferer turned curer, but he certainly about as slick as they get selling all sorts of wares) ooze of slickness. I don't think it disqualifies them from offering some good knowledge but their presentation, their slick testimonials, etc cross the line. If they offered a product discretely it would be one thing, but their marketing is at the used car sales level. Rubin takes the cake (Patel Thompson doesn't come close)- the many letters he puts after his name for qualifications are outright fraudulent and received from an unaccredited fly by night outfit, and his own claims that he tried every modality of healing under the sun before he came on SBO bacteria, do not ring true for the timeframe- heck even the before and after pictures of him under Crohn's vs today don't look like the same people... but I actually do feel his products have value in terms of quality control and quality of ingredients. I periodically buy one GOL product and am not suggesting anyone boycott somene because they are slick, but I tend to be repelled by slickness.
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


seconder
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Date Joined Jun 2008
Total Posts : 610
   Posted 6/4/2009 7:45 PM (GMT -6)   
Dr-A said...
I don't think it's wrong to have a product and charge money for it. I have a problem if someone says they can cure everything under the sun and try and charge you a ridiculous amount of money. There are lots of people out there that won't bother with something that is free because they put no value on it. Never got this, but you could offer something for free and no one would bother. Charge $50 and all of a sudden it has value to it.

The pharmaceuticals and most of the health care system is alot worse though, lol.

Mercola is great source for info, since he compiles stories from different media outlets. I just dont visit his store. I stick to the health blog.

Very true.  I read an article not too long ago about a woman who helped her neighbors figure out their child car seats and accidentally found herself an "expert" in the field.  She then started offering her services for free to strangers, but no one called.  She started charging $20 and suddenly couldn't keep up with the rush of customers.
 
Many people will happily pay for otherwise free advice. 

Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 6/4/2009 8:00 PM (GMT -6)   
But do people pay more willingly for something presented discreetly vs slick infomercial type stuff? Sure, spam and infomercials clog every bit of bandwidth nowadays but that is mostly because it costs no more to send a million emails than one- but I for one am repelled by slickness. When I hear the "you've got nothing to lose with our 30 day no questions aksed unconditional guarantee" I tend to walk out the door .
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/4/2009 8:29 PM (GMT -6)   
MLM's are usually the worse on that level of slickness. Like the guy that was chiming in on that juice thread. First time poster out of nowhere telling us his dead dog came back to life, lol. Not really, but anyway.

I am not too familiar with Ruben or Patel. Have follwed mercolas site for 3+ years. Actually had a women in my clinic who was working with him on some CFL lighting problems so I do have some faith in him. Not that it really matters though, because his health blog is merely a hub for a myriad of sources. I don't buy his products because that wasn't the original reason his site was put up. That came later, and I never saw anything wrong with it. Well, I lied, I actually have read several books he co-authored. Great reads that I bought off ebay dirt cheap, lol. I don't think he should be put in this category though. Being familiar with the evolution of the site he has never promoted himself being cured of anything that I have seen at least.


Great Topic, btw.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA

Post Edited (Dr-A) : 6/4/2009 7:55:31 PM (GMT-6)


kretinist
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 6/4/2009 8:39 PM (GMT -6)   
Thank you for bringing this up! 
 
As the mother of a child with UC (we hope its UC anyways) there is nothing more demoralizing than people trying to sell me 'cures'.  I honestly feel that everyone is different as evidenced by the many people on this board.  When I'm googling my little heart out trying to find some answers to help my son, half of what I turn up is 'buy this and you'll be fine FOREVER!'.  I personally just want to see how people are coping, what's worked for them and what I can try with my son to improve his quality of life.  Though I wish there was just one answer to fix everything for him I don't honestly think there is any one thing that will work for everyone   
 
The other problem with salesmen is that you end up with a lot of bad advice that some people actually take to heart and can be seriously damaged by.  Initially when my son was first diagnosed I ran into a lot of materials that said he should fast and that it would 'cure' him.  A fast for someone with UC can be potentially lethal, yet there is no disclaimer about the dangers, just a standard consult with your doctor blurb. 
 
It's just really pathetic and so completely not beneficial to my son's own circumstances.  I've had people tell me repeatedly about how their relatives have cured their UC.  But my son doesn't have those options.  He's been in a flare for almost two years now and only diagnosed for the past year.  He had a STROKE(!) because of his UC.  He's had repeated blood transfusions, repeated hospitalizations, intensive rehab therapy, has been on steroids for over a year, constantly battles with low blood counts, dehydration, joint pain, iritis, aggressive and constant bloody diarrhea, malnourishment, exhaustion and is already taking 20 pills a day to no avail and someone wants to make $$ of his suffering........? GRRR! 
 
Sorry.  I try not to rant so much.  It's just difficult trying to the best I can for my baby while trying to wade through all of the BS out there.  Googling is starting to give me a headache. 
 
At least this forum has really been a big help (and you don't even know it, so TY)!
Mom to:
 
Number One Son -
Sigmoidoscopy followed by full bowel study 3/2008
DX with ulcerative colitis 3/2008
Blood transfusion 3/2008
Hospitalization for two weeks
Stroke caused by colitis 3/2008
ICU for two weeks
Second blood transfusion
Rehab in-hospital for two months
Colonoscopy 6/2008
Not in remission
 
 


Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 6/4/2009 8:49 PM (GMT -6)   
Kretinist/mon-to-son-with UC,
Isn't that so so true-- it is my pet peeve too. Of course I believe in a free market and do not advocate special restrictions against slicksters (though I think he inetrnet needs to take a much heavier attack at spamming before it dies from it), but what I find the most disheartening is not that there are slimy people out there trying to profit from disease sufferers by saying anything, but rather that here are actual disease sufferers who would at least partly cross that line with their own people, so to speak. I can understand having a pasison for something learned through self-curing, but why become a slick used car salesman type then? As to what you and your son have been going through, it can be just as painful when anonymous posters insist on this or that as a surefire thing. I sometimes wonder why people post certain therapies almost angrily even though they are not even trying to benefit financially... e.g. whoever on a forum told you fasting was a surefire cure or whatever. I have seen the same thing with those with religious fervor against meds- and sometimes we see these over those with a religious fervor for meds too.  Like hackers and trolls and flamers, there is a big subculture of people who live on the internet to yank people's chain as pure entertainment, even- indeed perhaps even moreso, on health message boards than on other sites.  (HW is well moderated of course so this is not a frequent issue here).  There is tons of information out there but remember that something like 98% of all internet traffic (most of it intercepted by email providers) bandwidth is spam and on message boards probably 90% of advice is pure garbage (well not healingwell- probably only 60 or 70% here lol, but in general for message boards, yes). Sadly though docs use that as an excuse to laugh in our faces about our internet self-research, even though, with some intelligence and cross-checking on sites like pubmed, we can learn more than our docs from the remaining 10-40% that is of some value (and I am being purely arbitrary with my stats).


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 

Post Edited (Probiotic) : 6/4/2009 7:56:55 PM (GMT-6)


herbalgerbals
Regular Member


Date Joined Feb 2009
Total Posts : 85
   Posted 6/4/2009 9:05 PM (GMT -6)   
So whaqt kind of information can you give me on ini patel thompson?

Is she a fake? and what about the products she advocates on her site?

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/4/2009 9:19 PM (GMT -6)   
From the looks of things on Patel Thompson she is not a fake and her products may be of some value to some people but this applies to all the various supplements out there on the internet. Her book looks like it may have some value but I suspect it is simply a compendium of info. out there available from a good google search, but what irks me is her used car sales pitch- ditto for Mercola, and ditto for Rubin and many others.
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


herbalgerbals
Regular Member


Date Joined Feb 2009
Total Posts : 85
   Posted 6/4/2009 9:41 PM (GMT -6)   
I just kinda did my own research on thompson.. and well, she advocates some things taht I would never agree with personally..
any one who comes from a naturpathic stand point, I dont believe would advocate Absorb Plus, I looked at the angredients, and I do not think that is a good idea at All for me.. and I wouldnt recommend it to a fellow ibder, with whey protein etc in it..

Also, she advoactaes chewable gummy bear vitamins, obviously full of artifical ingredients and procressed vitamins, wich arent even as close to healthy compared to whole food based supplements.. and also, emergen-C so, yea.. Im not to stoked on her...

Anyone else have a good experience with any of these people whoi cured themselves and offer advice to us who are suffering abroad??

I know my GI doc hasnt done much for me.. except prescribe medicine, and here I am.. still sick...

I have had more success with food and avoiding certain things..
the best relief I have had was ona frutarian diet...

Sorry for the synicalism, Im just kind of depressed and angry today..

kretinist
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 6/4/2009 9:48 PM (GMT -6)   

From Patel Thompson's own site selling her book: 

If you've been looking for a very detailed, step-by-step plan that works quickly and effectively to induce disease remission (average duration 3-6 weeks) and reclaim your natural state of health, this is the book for you. A wonderful, natural alternative to damaging prescription drugs and surgery, dozens of clinical, medical studies show an elemental diet is as effective as steroids (prednisone) at inducing remission for inflammatory bowel disease.

THE IBD REMISSION DIET is definitely the fastest way to heal yourself  http://www.caramal.com/ibdrd/ibddescription.asp

 

I hate the implication that:

*natural is used to imply that its safe

*a 'quick cure'

*anyone who hasn't tried her diet hasn't tried to take care of their own health.    

*negating people who use medications or who elect to have surgery to improve the quality of their lives

*treating IBD and IBS as one in the same (which should be another indicator of ignorance and greed in my book)

*she also sites a single study that involved just 73 patients over a 22-year span.... (that's it?)

 

To me this is all garbage.  Telling me to buy not only the book but the products that just so happen to be featured in her shop.  To me that's out and out greed.......

I honestly don't feel that I'd even want to try this for my son, even if it could feasibly help, just because I'm so disgusted by her attitudes. 

.......but that's just me. 


Mom to:
 
Number One Son -
Sigmoidoscopy followed by full bowel study 3/2008
DX with ulcerative colitis 3/2008
Blood transfusion 3/2008
Hospitalization for two weeks
Stroke caused by colitis 3/2008
ICU for two weeks
Second blood transfusion
Rehab in-hospital for two months
Colonoscopy 6/2008
Not in remission
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 6/4/2009 11:06 PM (GMT -6)   
Patel-Thompson's daily emails sent me over the edge. Daily from her and her shoppe. After I ordered Mucusol Heal, and got 3 free samples of other "stuff", I read the labels and decided my daughter had enough crazy stuff in her system. Her GI doc said "no". anyway. Same for the stuff I bought at the Acupuncturist place. Then I looked at my "free"samples form Jini P-T--all expired the week I got them. Guess I was just a way to dump the old merchandise.
Desperate people grasp at straws. I realize I might be one of them. My doc. may not know everything about holistic healing, but she brought me back to earth when she said, "You weren't really going to put that into her body were you, it is made in China!" I figured there are many healthy non-IBD Chinese people who have been around longer, and perhaps they were on to something we were not. She scoffed, that while she was open to new ideas, our FDA did have fine practices, and trusting what was in the stuff was a crapshoot. An immuno-compromised, fragile colon could not risk the processes and unknowns. Then I bought the Zango juice...LOL. You should hear the song and dance on that one! What did WC Fields say about a sucker born every minute! Least it tasted good, and could do little harm.
Smiles, K
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 6/5/2009 6:11 AM (GMT -6)   
Jini Patel Thompson is the only person discussed that I am familiar with. I discovered her site early on in my search for relief from my UC. Frankly, I was initially put off by the business side of her operation. But the more I thought about it, the more I realized that she is offering a service built upon a great deal of work and initiative. Why not be compensated for that?

The primary product she sells is her books. She offers many other items at her site, including the various supplements she recommends, but you need not buy them from her. Virtually all can be purchased elsewhere as they are not proprietary. The exceptions are products like absorb-plus which she developed herself. It is expensive, but the process to make it is expensive (based upon my conversation with a nutritionist). But you are not required to purchase even that to benefit from her program.

What I like about her approach is that it is non dogmatic and empirical. She makes clear in her book "Listen To Your Gut", that you need not always follow her recommendations. Ultimately, you should do what you think is best given the individual nature of the disease and your own circumstances (thus the title of her book). If that means sticking with a more traditional medical regimen, then that is what you should do. Her approach is also quite scientific in the sense that it is based upon experience and experimentation. She may not push a traditional medical protocol, but in a disease like IBD, perhaps there is room for a different approach?

I don't buy into everything she says, but neither do I find her to be a slick huckster. I personally have benefited from her knowledge. She has given me a much better understanding of this disease and a way to deal with it. For that I am grateful.

By the way, I think this is a good topic. I obviously do not agree with some of the opinions expressed, but it needs to be discussed.
Diagnosed with UC in 1990.
Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 6/5/2009 11:56 AM (GMT -6)   
Kretinist- you are spot on- I especially liked what you said about "warning signs" of a slick hustle. Again, I am not so dogmatic as to not try and pluck anything I can from any source and having an open mind. But like you I looked at the ingredients in some of Patel's products and was appalled at the junk in them- sugars and fillers and whatnot, especially in Absorb Plus. She recommended strongly that a particular brand of aloe vera juice- George's- was quite unlike others in that it lacked the irritatants of other aloe juice, but I tried a bit and it flared me INSTANTLY. I can't have confidence in this sort of advice. (Not to diss anyone who found her advice helpful though).  But people's mileage may vary and clearly some have benefited from her advice so to each their own. Oh, also, she is fanatically opposed to colonoscopies because she says that getting a sterile scope is next to impossible... Now, this raises a very valid point but for those like me with longstanding UC there is really no choice but to get regular colonoscopies or play with an extremely loaded gun.  Incidentally, to those who have her book or her newsletters etc- does she discuss helminthic (parasitic worm egg or worm) therapy at all?  Or fecal infusions? If she gives more than lip service to these I will give her some benefit of the doubt.


Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 

Post Edited (Probiotic) : 6/5/2009 11:37:52 AM (GMT-6)


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2009 12:25 PM (GMT -6)   
Personally, I don't buy any of their rhetoric. Sure, if different types of diets help you to feel better then eat that way. But for any of these authors to claim success with their treatments I'd like to see the research. Show me double-blind placebo testing with UC patients over a period of years. There are so many people out there are desperate for relief that they would pay anything on the hope that it helps. I was one of them.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Hellokitty
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Date Joined Mar 2009
Total Posts : 765
   Posted 6/5/2009 1:00 PM (GMT -6)   
This is the first time I heard of Jini Patel Thompson. There is so much out there and there are so people who say they can cure UC. For me recently I have found it hard. I am one of those type of people who they would sell stuff to, just because I hate being ill, I hate not being able to function in life. I think most people do this is why these things are the best sellers. Everyone wants to be cured. I think that we have to accept there is no cure,(which I am now doing) and all you can do is try to improve your symptoms the best you can.

As we are mentioning this. What are peoples thoughts on Paul Nison. Out of all things I looked on so far I found his the most interesting. But again he says cure, and I don’t believe he is cured. I would believe he is in a remission. And I do wonder if he really is on all raw foods all the time. I did try this and did find benifits but I also found real cons.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1X 500mg pentasa in the morrning= 250g pentasa and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


herbalgerbals
Regular Member


Date Joined Feb 2009
Total Posts : 85
   Posted 6/5/2009 3:06 PM (GMT -6)   
I know people who are REally good friends with paul nison, wich is how I was introduced to him.
They own a raw food cafe here in san diego, her brother had hepatitis C, went to hypocrities health institute just like paul nison, and both are now in remission. her brother is a yoga instructer now, very very fit, has no problems, and is on no medications, as is paul nison..
paul has helped me a lot with adivce, and Im pretty educated on the raw food approach, as well as food combining and fruitarian life style. =]

Ive learned quite a bit.

There is also david klein, who I have spoken to, but he has a horrible attitude, and cares more about money then helpng people. I have david kleins book on my computer wich I will email to anyone who wants it. he also is cured from this disease thru a fruitarian life style. and has been in remission longer then paul nison has.


also, check out www.rawfoodsupport.com you can speak to other people who have been in remission for years thru raw food life style. =]

I would be in remission if it wasnt for the heavy bulky salads I started eating very quickly, it really irritated my gut.. but, all my ulcers, and inflammation are gone. I have solid poops now, no bleeding or mucus, just abdominal discomfort depending on what I eat.

I eat fruit all day, bee pollen, honey, I eat veggie juices, carrot juice/carrots, coconut water, and have put meat back into my diet,

no grains, no nuts, no seeds, no starches, no legumes, no dairy. just vegies, fruits, and fish/chicken/turkey.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/5/2009 4:39 PM (GMT -6)   
I've had personal contact with Gotschall and Patel-Thompson. Both have been personally touched by IBD - Jini is a Crohn's sufferer, Gotschall's daughter a UC sufferer. Both have had success with their methods and are sincere in their desire to help others. I can't speak for Rubin, but he appears to be genuine and sincere, too. I don't think any of these people set out to make tons of money in scams that dupe IBD sufferers. If they set up a free Web site and sent out free ebooks, would they get their message out effectively? Spreading the word is about marketing and promotion which costs money. Printed materials cost money for design and production. I think, in some cases, the marketing and promotion gets out of hand as the operation grows and other people are hired that have their own agenda.
 
You'll never see double-blind, placebo, years-long testing on diet and natural supplements because 1) there's no way to enforce dietary restrictions 24/7 for a period of years and 2) there's no funding because no one stands to gain financially on non-patentable therapies. Also, in my experience, there's not a single magic bullet that works for one person, much less all IBD sufferers. It takes a combination of therapies, tailored to your specific situation to bring about long-term remission.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 6/5/2009 5:06 PM (GMT -6)   
I have not the slightest doubt of Elaine Gotschall's sincerity.  There was not a shred of seedy commercialism to her, not one shred.  She never "sold" the diet or anything to do with the diet other than her very modestly priced paperback (mostly) book.   I don't doubt that Patel-Thompsen was an IBD sufferer, or at least was diagnosed as having IBD (the medical profession doesn't really know what IBD is , after all, other than a way to categorize certain symptoms).  And while I suppose we can give Rubin the benefit of the doubt on also having been an IBD sufferer, some of his other actions do not inspire a belief in his sincerity- see http://www.quackwatch.org/11Ind/rubin.html - the guy's credentials are mostly phony.  He mentions a couple dozen major healing modalities, from TCM to the SCD to macrobiotic diets to this and that, that he tried intensely before finding the magical elexir of SBOs that he put into Primal Defense- and yet if you divide the time from being disease ravaged to cured by SBOs, by the number of modalities he supposedly tried intensely, you come up with a couple weeks or so for each modality.  And these are all techniques which certainly require months, and sometimes even years, for people to notice a big difference.  Now, I know my sig line says I have tried "everything under the sun"- it's an expression, but at least I can relate it to many many years of trying things.  But all that said, I have used Primal Defense and stll occasionally use it.  I have tried going on it and off it for months and I can attest it seems a reasonably potent probiotic and also doesn't seem to irritate my gut.  So even if I think the guy is a slick used car salesman type (and Rubin, with a line of products that is getting decidedly out to lunch, with things like supposedly magical water for example), I'll still consider a vendor's products if they look interesting- though I will be a much tougher sell than if the salesman was very humble.  But as far as healing goes, you are spot on, Princessa, that we need to have an open mind and try many things and never, ever give up.  In this regard, if Patel-Thompsen collates "everything under the sun", I guess she does perform a service even if her specific products are a bit crass, commercial, and contain some heavily marked up junk ingredients.  
princesa said...
I've had personal contact with Gotschall and Patel-Thompson. Both have been personally touched by IBD - Jini is a Crohn's sufferer, Gotschall's daughter a UC sufferer. Both have had success with their methods and are sincere in their desire to help others. I can't speak for Rubin, but he appears to be genuine and sincere, too. I don't think any of these people set out to make tons of money in scams that dupe IBD sufferers. If they set up a free Web site and sent out free ebooks, would they get their message out effectively? Spreading the word is about marketing and promotion which costs money. Printed materials cost money for design and production. I think, in some cases, the marketing and promotion gets out of hand as the operation grows and other people are hired that have their own agenda.
 
You'll never see double-blind, placebo, years-long testing on diet and natural supplements because 1) there's no way to enforce dietary restrictions 24/7 for a period of years and 2) there's no funding because no one stands to gain financially on non-patentable therapies. Also, in my experience, there's not a single magic bullet that works for one person, much less all IBD sufferers. It takes a combination of therapies, tailored to your specific situation to bring about long-term remission.



Pancolitis >20 years, allergic to all 5ASAs
(To pharma: enough already with the umpteen variants of Asacol!)
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering increasing pred again,
maybe surgery this year soon
 
 

Post Edited (Probiotic) : 6/5/2009 4:16:08 PM (GMT-6)


kretinist
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 6/5/2009 7:43 PM (GMT -6)   
princesa said...
I've had personal contact with Gotschall and Patel-Thompson. Both have been personally touched by IBD - Jini is a Crohn's sufferer, Gotschall's daughter a UC sufferer. Both have had success with their methods and are sincere in their desire to help others. I can't speak for Rubin, but he appears to be genuine and sincere, too. I don't think any of these people set out to make tons of money in scams that dupe IBD sufferers. If they set up a free Web site and sent out free ebooks, would they get their message out effectively? Spreading the word is about marketing and promotion which costs money. Printed materials cost money for design and production. I think, in some cases, the marketing and promotion gets out of hand as the operation grows and other people are hired that have their own agenda.
 
You'll never see double-blind, placebo, years-long testing on diet and natural supplements because 1) there's no way to enforce dietary restrictions 24/7 for a period of years and 2) there's no funding because no one stands to gain financially on non-patentable therapies. Also, in my experience, there's not a single magic bullet that works for one person, much less all IBD sufferers. It takes a combination of therapies, tailored to your specific situation to bring about long-term remission.

The reason I sited the study was simply because she had it posted.  Even if Patel Thompson has a marketing firm and there are other people involved in her site, her store, etc., you would think that she has at least a bit of control over what is posted on it. 
 
That study bothers me because it means so very little.  I don't like the fact that it's posted as if it's 'proof' that this will work for most people when everyone on this forum at least, knows that is not the case. 
 
If she had her book for sale as an ebook or if her site was run with access to all of her information for  a small 'donation' to cover operating costs then I might find her a bit more credible, or at the very least not be quite so offended.  If she broadcast all of this vital information for free I'd be elated.  It's kind of an odd sentiment to say that no one would know if she didn't charge.  In this day and age, post on a few forums, hold a conference or two and next thing you know, everyone knows. 
 
I understand that you won't see the lengthy studies regarding diet and I'm sure that's at least in part why people who suffer from IBD continue to struggle and why everyone has to work hard to find different therapies that work for them through just trial and error.  Patel-Thompson's information isn't gained scientifically, it's gained through her own personal experience, and I don't like it being sold as such. 

If I had the cure for breast cancer that was through diet and supplements, things that can't be patented.....wouldn't you expect me to share that with all of the people who suffer from breast cancer? 

I just think that if she's suffered from IBD then she knows the agony that people go through.  I've never met anyone who has said to me "Oh, your poor son.  How horrible!  I have that too!  You know something that's really helped me?  Well, give me $1 and I'll tell you." 

........and if they did say that I'd probably punch them in the face.



Mom to:
 
Number One Son -
Sigmoidoscopy followed by full bowel study 3/2008
DX with ulcerative colitis 3/2008
Blood transfusion 3/2008
Hospitalization for two weeks
Stroke caused by colitis 3/2008
ICU for two weeks
Second blood transfusion
Rehab in-hospital for two months
Colonoscopy 6/2008
Not in remission
 
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/5/2009 9:15 PM (GMT -6)   
Caveat emptor.

Dealing with chronic illness means having lots of information at your disposal. (That goes for every time you walk into your doctors' offices too.)

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/5/2009 10:33 PM (GMT -6)   
Kretinist: from what I understand in the early days, Jini was doing precisely what you suggested... she was sharing her experiences - what seemed to work and what didn't - for free and by word of mouth, over the Internet, etc. As more people tried her various protocols successfully, she was urged by others to gather the information into a book for publishing and distribution to help get the word out more effectively. I believe she started with a small pamphlet or downloadable file. As she got more and more positive feedback and information from users, it evolved into the first edition of Listen to Your Gut. She continues to research and experiment and published a second, much larger and comprehensive version of LTYG, as well as writing other books. The establishment of the online supplement shop was also in response to reader demand for a convenient source of the supplements mentioned in the book.
 
To be fair, Elaine Gotschall was much older, from a different generation. She was never tech savvy and was actually rather touchy at times dealing with the public and protective of her privacy. It's not really an apples to apples comparison.
 
Of course, none of this really matters. Ultimately, it's up to you to do the research - read Gotchall, Rubin, Klein, Patel-Thompson, Mercola - and look for common threads. Experiment and see what works for you. Take what works and leave the rest.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


kretinist
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 6/6/2009 12:57 AM (GMT -6)   
Thanks for your input Princesa. 
 
I don't usually get quite so worked up, but I feel like we're at a crossroads regarding my son's treatment.  He's been flaring for almost two years solid now and his GI essentially has demanded that he go on to 6mp.  But his doctors have done nothing regarding food allergies, diet, probiotics, managing his other symptoms, etc. and have instead just fobbed me off with 'Let's get this flare under control first.' which isn't happening. 
 
We're reluctant to start such a dangerous course of medication.  We also have concerns that he doesn't have UC but might have Crohn's Colitis instead.  Essentially I'm left to my own devices trying to figure out what's best for him.  Its horrifying having to hold him down for yet another blood draw, one more IV, choking down more pills, watching him constantly suffering and being helpless to stop it.  So I hope you all forgive my um.......sensitivity if I've sounded a tad too pissed off. 
 
It's not that I don't think any of these people don't have anything important to add to the mix...its just that there's so much in the mix itself and I'm reluctant to adhere to what anyone is trying to sell me no matter who they are. 
 
So yes, let the buyer beware.   (Absolutely applies to doctors too!)

Mom to:
 
Number One Son -
Sigmoidoscopy followed by full bowel study 3/2008
DX with ulcerative colitis 3/2008
Blood transfusion 3/2008
Hospitalization for two weeks
Stroke caused by colitis 3/2008
ICU for two weeks
Second blood transfusion
Rehab in-hospital for two months
Colonoscopy 6/2008
Not in remission
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 6/6/2009 3:51 AM (GMT -6)   
My thoughts:

No one diet works. The best way to find out what diet works for you is to keep a food diary to figure out if you have any food triggers and if so what they are:

Possible food triggers:

Lactose
Fructose
Wheat
Yeast
Gluten

Pro-inflammatory foods

Some foods actually help reduce inflammation. They are anti-inflammatory.

---------------------------

Pro-inflammatory: fatty meats, processed meats, dairy, eggs, sugars, artificial sweeteners, nightshades (tomatoes, white potatoes, eggplant, peppers).

---------------------------

Anti-inflammatory: turmeric, ginger, garlic, onions, cinnamon, green/herb teas, oily fish, almonds, hazelnuts, walnuts, flax seeds, sunflower seeds, pumpkin seeds, olive oil, lean poultry, green leafy vegetables, berries, fresh pineapple, soybeans, tofu, soy milk.

--------------------------

Maybe I should write a book.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working

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