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Discussion Starter · #1 ·
Hi everyone,I was brought over here a couple of weeks ago by Flux from my BB at www.americasdoctor.com. I run the Digestive Conditions Board over there and Flux felt it necessary to bring me over to his debate with MikeNL on this board over LEAP. YOu can go check out the whole discussion if you'd like over there. Go to www.americasdoctor.com and click on the Digestive Conditions Community, then go into the Message Board after you have registered.Anyway, to give you a brief history of that and ne as well- I noticed that Flux only picks on natural methods of control for IBS and with no real data to back him up. Just alot of fancy scientific words that mean nothing. So I came to the conclusion that he is a pharmeceutical guy in disguise and I told him so.As for me, I am 33 and have had D predominant IBS since I was 13. Some times in my life have been worse than others for that, but overall its been miserable. I also have fibromyalgia as well as tons of scarring in my small intestine and a couple of ulcers to boot. The scarring (which is painful, BTW) and ulcers were a mystery as to the whys. So I took LEAP and for the past 6 weeks or so, I have become a totally different person health-wise. I was up to about 20 meds per day for my fibro and now I am taking nothing but my Allrgra ( for my hay fever). My Fibro is going into remission, my IBS is lessening everyday and I can't EVER remember feeling this great! My husband, friends, family and my doc are so happy to have "me" back again!I write this because I saw that several people were asking for an actual patient to ask questions of- so here I am.And as to the particular science involved in all this- all I can say is that I really don't care about that, what matters to me is that I have my health back.The proof is in the pudding, as they say.Thanks,Lisa from Nevada
 

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Amen to that. And to quote in true Flux style
quote:And as to the particular science involved in all this- all I can say is that I really don't care about that, what matters to me is that I have my health back.
This is the way it should work and has in the past for some of the currently medically recognised disciplines/products. That is, if it works then damn well take it and don't wait around for scientific backing-up. That WILL come later once enough people experience relief so that a) it can't be a coincidence and
the opposers of it become the minority. ScottySwotty[This message has been edited by scottyswotty (edited 09-25-2000).]
 

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Thanks for sharing this Lisa. It has amazed me that Mike came on the bb and let people know that he has seen IBSers get better with the LEAP program, only to take a beating for it. Human nature can be quite a puzzle.
 

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I'm glad you're feeling better, but in all fairness to flux, I've never witnessed him post a meaningless "scientific" word. Unless you reside in a country where the dictionary is a banned book, you might want to try reading it.Apparently you equate "real data" with anecdotal data. That's fine if that's what convinces you. And as I said before, I'm glad that your personal experience has been a positive one with LEAP. However, I just want to point-out that relying exclusively on anecdotal evidence has some drawbacks--especially in this forum. The one that concerns me the most is this: LEAP involves changing your dietary behavior, but for all we know, your diet was less optimal than mine before starting LEAP. So, if I assume I'll feel as much improvement as you did from similar dietary modifications, I could be seriously disappointed and out a big honkin' wad of cash with no improvement. (Sorry if honkin' isn't in your scientific dictionary.)
 

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Discussion Starter · #5 ·
Hi SteveE,Well, I'll take your sarcasm as humor and let you know that I live in Nevada- but was educated in the University of California college system, so I am familiar with the dictionary. Sorry- "honkin'" isn't in there. But because I was raised close to Los Angeles, I am acquainted with the vernacular.Thanks for your concern about my intellect.I can only tell you what Flux posted on my BB- because here as I am a newbie, obviously. He tried to get into a scientific debate over there with me because that is the way I pulled the conversation. You can check it out for yourself- if you care to.The interesting thing about your response is that it ignores that medical science is a changing art. Not every procedure, med or lifestyle change will work for each and every person to the same degree. As for LEAP, the last study had 85% of IBS patients in good control and the rest were much improved. That is A HUGE success by any standard. If you'd like to call patient self-reporting anecdotal- go ahead, but because things like IBS are not measurable in a quantifiable way, that's most of what the docs have to go on. Its also a big reason so many doctors have said its all in your head. And I should think you would know better- relying on a standard that discounts patient experience. I have seen a few studies where they did the double-blind placebo technique with this type of research too and it was most favorable. (Mike NL can give you the particulars, if you are interested)As for the money, well, that is between you and your bank account and insurance company. I felt the money was worth ANY change for the better in my health. As I said, I was up to 20 meds per day and that gets expensive. So to take this test was not that much more than I was already spending. Granted, I am blessed to be able to do this financially. But if I spend $900 and have my health back for the rest of my life- at my age and projected lifespan, that equals about $18.00 per year. I consider that a terrific investment.In taking LEAP, I was hoping to just drop maybe 2-3 meds and control my IBS better. It was a completely wonderful shock to be able to drop ALL my fibro meds and avoid Lotronex. As for my diet, I ate lots of whole wheat, olive oil, pasta, fish, yogurt and fruit. Not too shabby- but guess what? I am reactive to wheat and olive oil. So my healthy Mediterranean diet was making me sick.All I can say to you is that I feel very sorry for you that you seem to have cut yourself off to this as a possibility for your health.I decided to be a vanguard in this because I was tired of living my life half through pharmeceuticals and the other half in the bathroom. If that kind of life still appeals to you, all I can say is that is your decision and good luck to you.Lisa from Nevada[This message has been edited by WashoeLisa (edited 09-25-2000).]
 
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I found the Digestive Conditions Community but I couldn't find where to register. I clicked on the message board, but it gave me an error message. What am I doing wrong?
 

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Discussion Starter · #7 ·
Hi JoanieMama,Sorry about that. The AmDoc site is down today for major software rehab. They recently moved from NJ to Chicago and are upgrading everything.They expect it to be up sometime this afternoon.Let me know what you think after you get in....or leave me a post over there!
Thanks,Lisa from Nevada
 

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Discussion Starter · #8 ·
Hi ScottySwotty and Island Girl,Thanks for the warm welcome and kind words! I really do appreciate them! I try to be as open as possible to help other people who can learn from my trials (taking something evil and making good out of it) and it always helps to hear from nice people!And Island Girl, (love the name!) I have found that alot of chronically ill people will talk up a blue streak about wanting to get better, but they really don't. They get too many perks from their illness to give it up. Either in sympathy from others or interpersonal family dynamics. So, yes, human nature in some forms can bash the good stuff that comes along.Thanks!!Lisa from Nevada
 

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I don't have anything to add to the thread, except to expound upon and clarify one comment directed at Lisa which is incorrect:---------------------"Apparently you equate "real data" with anecdotal data"---------------------The information available about the method is not limited to anecdotal data. Dr. Kaszmarski published an initial investigation of whether the MRT test itself that the LEAP is based upon analyzed and identified what was claimed. So his (and his associates) conclusionw as that it did. Regardless of whether one likes the way he did it, or suggests that European medical journals are intrinsically inferior or otherwise of no value, it is not anecdotal.Dr. Pardells evaluation of clinical response in patients with specific chronic digestive dysfunction and their symptom regression in the first 30 days after institution of the diet is not anecdotal findings. Again, if one wants to argue or quibble about how he did it does not make the patients evaluated phantoms or confabulations. And there are non-anecdotal articles, reviews, studies, clinical reports etc. dating back from this year to 20 years back concerning the role of diet, food intolerance, and emerging finidngs implicating abnormal hypersensitivity reactions in functional bowel disease that are not anecdotal.This patient requested and recieved all that information after reading what was on the website as well. She did not approach her decision lightly, nor one hte basis of a patient claiming success.I know the patient As I watched her case and how it was handled (like I do many). I spoke with her personally a number of times. She looked at all the information on the subject, felt it made sense to her, and since she was getting nowhere but worse doing what she had been doing she made the decision to undergo the testing and commit to the lifestyle change on that basis.While some people do make their decision based solely on anecdotal information (patients and doctors attesting to the value of the system), the way the patients approach it seems to make no difference in their outcomes. Their committment is what makes the difference.I would suggest also that LISA is not an "anecdote". She is a patient, and a well-informed one.Have a DFD!MNL________________ www.leapallergy.com
 

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Lisa,Well-stated response to my post. I'm glad you have a sense of humor. Anyone who currently has or every has been a member of the IBS brother/sister(hood) MUST have one.I don't know what flux's motives are, and I don't know what yours are and I don't know what Mikes are, but I know where I stand.I'm an IBS-er who spent several years and big, uhhh honkin' wads of cash pursuing some of this ever-changing medical "art" you speak of to free me from the bonds of IBS. I heard similar testimonials to yours regarding candida overgrowth, gluten intolerance, lactose intolerance, etc. etc. After all that, I found myself feeling as bad or worse than before, and short a whole bunch of change. I even saw the alleged top "alternative" doctor in the midwest who point-blank admitted to me that these new methods are like shooting rubberbands in the dark at a moving target.You're right...if I could lay down the credit card one more time and go into debt another $900 or even $5000 to get well, I do it in a second. However, it is a gamble that my insurance company (as of yet) apparently doesn't have any interest in paying for. Even if they DID pay for it, after being burned on previous lifestyle changes that ACTUAL MDs told me WOULD bring about improvement...and committing to their dietary modifications 100% only to find myself in a tailspin of feeling WORSE, it is unlikely that I'd approach it with very high expectations.So, if you want to feel sorry for me, go ahead. And while you're feeling sorry for me, I'll be worrying about all of the people taking a big financial gamble out of desperation for a cure. I'll be thinking about how they could very well wind-up right where I'm at after they've raised their expectations to the roof on the basis of your story of improvement. In my opinion, your pointing-out that you feel sorry for me is a ploy to play on my emotions and the desperation of others with IBS who might be reading this thread to get in our wallets.Unfortunately, another thing you're right about is that we do have very little to go on (in terms of finding immediately workable solutions) besides keeping our ears to the ground and listening for success stories from others--your medical art model, I guess. However, flux's point is equally valid that the best way to validate such stories is with double-blind placebo-controlled tests.So what it boils-down to, in my opinion, is a choice...do you rely exclusively on the "pharmeceutical model" which is what you seem to be labeling as flux's point of view or do you hope that one of these new-age medical artists can paint a better picture for your health comissioned by your cash. Since I'm still smoldering from being burned by such "artists," I'll let the more traditional approach of letting science take it's course guide my medical choices for now.In the meantime, I suggest everyone considering this approach take a close look at the post about how to spot a medical fraud and judge for yourself how closely this matches the criteria.
 

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No time except for quick point...booked up today.------------------------------------quote: ________________________________"flux's point is equally valid that the best way to validate such stories is with double-blind placebo-controlled tests." _________________________________Double blind placebo controlled oral challenge has serious shortcomings as confirmatory in this type of food intolerance for several reasons related to how it is done. Its the gold-standard for food allergy of the Type I reaction, but there are technical and practical problems with this method for these types of reactions which I can post later if need be. There is no single "best-way" when dealing with "delayed-allergy" if you will. can describe tomorrow when I have the time.--------------------------------quote: ________________________"However, it is a gamble that my insurance company (as of yet) apparently doesn't have any interest in paying for." ________________________No one has submitted a claim on the plan you are on yet therefore it has not gone to the Review Committee for consideration of the procedure in the context of an assigned diagnosis on a specific patient. Your statement makes it sound like it has been rejected out of hand by your carrier which i do not beleive is the case.It HAS been accepted by over 250 other insurance plans to date.-------------------quote: ____________________________"...a ploy to play on my emotions and the desperation of others with IBS who might be reading this thread to get in our wallets." ____________________________Your implication that Lisa is a "shill" needs to be corrected. Again.Lisa is a patient just as she said who of her own free will wanted to share her experience and success with others. -----------------quote:".., I suggest everyone considering this approach take a close look at the post about how to spot a medical fraud and judge for yourself how closely this matches the criteria."Since you persist in trying to pursuade people that anybody, including the doctors and dieticians who developed and use this method, whose patients report success is intrinsically a fraud based upon the fact that they report success, I recommend that people should read the whole site, and the "anecdotes", and the posted findings of independent doctors as well, rather than conclude from the innuendo perpetually posted here that such things do not exist, or are somehow fabricated, as part of a sinister plot to separate the innocent from their assets.OH YEAH I FORGOT! The LEAP method is also a fraud because food and additive intolerance can cause more than one symptomologic set! Therefore it is snake oil. These are not claims, these are findings of hundreds of referecnes from investigators who have found that foods and additives can trigger other conditions as well. This includes...well, here is a link to look at that is not ours. I will give you 10 more from other health sources tomorrow. http://www.naturalhealthlink.com/consumers...s/Allergies.htm Gotta run...meetings with my unindicted co-conspirators dontcha know!Have a DFDMNL_______________________ www.leapallergy.com [This message has been edited by Mike NoLomotil (edited 09-26-2000).]
 
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SteveE - I agree with most of your post, IBS is such a difficult disorder to find relief from. Everyone is so different. I know that some improve on their own, but for the most part if people stop trying they probably will not improve. I also know that many people will never find anything that helps them but I do know many out there do find one or more things that help. I feel that people should not wait until the mainstream medical community finds the cure because it might not ever come.As far as the medical fruad post, I can match their criteria up with just about any IBS remedy out there. ------------------ http://www.digestioninfo.com
 

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Good point about it not necessarilly being rejected outright by my insurance provider. Obviously, I don't intend to be the first to try the system, but I'll be interested in hearing what my provider has to say if you ever get see such a submission.Now, I want to clear-up one thing about my perspective. What concerns me the most with this new thread (as with Mike's original thread about LEAP) is the approach used here. In this case, Lisa's first post doesn't stick to the facts of her personal experience with LEAP. Instead, it come-outs swinging against flux. Lisa's reply to me where she notes that she "feels sorry" for me is a plain-and-simple attempt at emotional manipulation. One possibility for choosing emotional manipulation is that she's doing this because she'll gain from getting others on board. Another is that she really wants me to feel as good as she does so much that she resorted to a tactic like this because she didn't know how else to persuade me. Or maybe she's heard one too many campaign speeches during this election year, and emotional manipulation is catching-on as the way we persuade everyone now.Maybe I am as paranoid as you're trying to make me out to be, but as the song says "I got a right to sing the blues."
 

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FYI:Allergies: Dubious Diagnosis and Treatment Stephen Barrett, M.D.Many dubious practitioners claim that food allergies may be responsible for virtually anysymptom a person can have. In support of this claim -- which is false -- they administer varioustests purported to identify offending foods. Claims of this type may seem credible because about25% of people think they are allergic to foods. However, scientific studies have found that onlyabout 6% of children and 1-2% of adults actually have a food allergy, and most people withfood allergies are allergic to less than four foods [1].Cytotoxic TestingThe most notorious such test was cytotoxic testing, which was promoted during the early 1980sby storefront clinics, laboratories, nutrition consultants, chiropractors, and medical doctors.Advocates claimed it could determine sensitivity to food, which they blamed for asthma,arthritis, constipation, diarrhea, hypertension, obesity, stomach disorders, and many otherconditions. However, controlled studies never demonstrated reliability, and some studies foundit highly unreliable [2-5]. For example, one study found that white cells from allergic patientsreacted no differently when exposed to substances known to produce symptoms than whenexposed to substances to which the patients were not sensitive [6]. Government regulatoryactions [7-10] and unfavorable publicity have almost driven cytotoxic testing from the healthmarketplace. But a few practitioners still perform it, and many use similar "food sensitivity"tests.ELISA/ACT TestingAnother test claimed to locate "hidden allergies" is the ELISA/ACT, developed by Russell Jaffe,M.D., Ph.D., and performed by Serammune Physicians Lab (SPL), of Reston, Virginia, whichJaffe directs. According to an SPL brochure: When we think of allergies, we immediately think of an allergy whose symptoms occur within minutes of ingesting a food or chemical. The symptoms include hives and itching. . . . "Hidden" or "delayed" allergies are more difficult to identify because the onset of symptoms is delayed from 2 hours to 5 days and the symptoms range from physical pain to unexplained fatigue. Scientific estimates are that as much as 60% of all illness is due to hidden allergies [11].The brochure states that any of the following may indicate the presence of hidden allergies:chronic headaches, migraines, difficulty sleeping, dizziness, runny or stuffy nose, postnasal drip,ringing in the ears, earaches, blurred vision, irregular or rapid heartbeat, asthma, nausea andvomiting, constipation, diarrhea, irritable bowel syndrome, hives, skin rashes (psoriasis,eczema), muscle aches, joint pain, arthritis, nervous tension, fatigue, depression, mentaldullness, and difficulty in getting your work done.The ELISA/ACT is performed by culturing the patient's lymphocytes and seeing how they reactto up to 300 foods, minerals, preservatives, and other environmental substances. After the test iscompleted, the practitioner (typically a chiropractor) recommends dietary modification andsupplements. SPL maintains a referral list of practitioners who perform the test and supplierswho can provide "special combinations of the suggested supplements to reduce the number of'pills' you may have to take." In 1994, the complete (300-item) profile plus interpretation cost$695.Although the ELISA/ACT test can assess the levels of certain immune responses, these are notnecessarily related to allergy and have nothing whatsoever to do with a person's need forsupplements. Moreover, many of the symptoms listed in SPL's brochure are unrelated to allergyand are not appropriately treated with supplement products. [Note: This test should not beconfused with the ELISA test, which is a standard test for certain infectious diseases.]Other Dubious TestsIn addition to cytotoxic testing and ELISA/ACT, the following procedures are not valid formanaging food allergies: ALCAT testing, which is said to measure how blood cells react to foods "under conditions designed to mimic what happens when the foods are consumed in real life." [12] NuTron testing, which supposedly measures the "reactivity" of white blood cells to food and other substances, is used design a diet that eliminates foods that cause white cell "activation." Proponents claim that the diet can improve overweight and many other conditions "caused by the release of inflammatory chemicals from the activated white cells." The LEAP Program, in which the Mediator Release Test (MRT) is used to identify "delayed food allergies" and treatment involves dietary manipulation and possibly supplements and/or herbs. Provocative testing, in which substances are injected under the skin in increasing doses until symptoms are reported Sublingual testing, in which suspected foods are placed under the tongue Neutralization, in which progressively smaller doses of substances are administered until the patient no longer reacts Other food immune complex and IgG tests, which assess immune reactions that are common but not necessarily related to allergy Desensitization, in which progressively larger doses of a food are injected. While desensitization may work for hay fever and other allergies related to inhaled substances, it is worthless for foods and can be dangerous. Applied kinesiology, in which the patient's arm strength is tested after test substances are placed in the patient's mouth or hand. Nambudripad's Allergy Elimination Technique (NAET), based on the notion that allergies are caused by "energy blockage" that can be diagnosed with muscle-testing and permanently cured with acupressure and/or acupuncture treatments. Electrodermal skin testing, in which a computerized galvanometer is used to detect supposed "energy imbalances." In 1999, the British Advertising Standards Authority reviewed a pamphlet which alleged that a Bio Resonance Therapy device could help people suffering from headaches, overweight, tiredness, bloating, irritable bowel syndrome, skin rashes, arthritis, and premenstrual tension. In May 1999, after reviewing a manual and other information about the device, the Authority concluded that the claims were unsubstantiated [13]. Proper TestingThe correct way to assess a suspected food allergy or intolerance is to begin with a carefulrecord of food intake and symptoms over a period of several weeks. Symptoms such as swollenlips or eyes, hives, or skin rash may be allergy-related, particularly if they occur within a fewminutes (up to two hours) after eating. Diarrhea may be related to a food intolerance. Vaguesymptoms such as dizziness, weakness, or fatigue are not food-related. The history-takingprocedure should note the suspected foods, the amounts consumed, the length of time betweeningestion and symptoms, whether there is a consistent pattern of symptoms after the food isconsumed, and several other factors. Although nearly any food can cause an allergic reaction, afew foods account for about 90% of reactions. Among adults these foods are peanuts, nuts, fish,and shellfish. Among children, they are egg, milk, peanuts, soy, and wheat [14].If significant symptoms occur, the next step should be to see whether avoiding suspected foodsfor several weeks prevents possible allergy-related symptoms from recurring. If so, thesuspected foods could be reintroduced one at a time to see whether symptoms can bereproduced. However, if the symptoms include hives, vomiting, swollen throat, wheezing, orother difficulty in breathing, continued self-testing could be dangerous, so an allergist should beconsulted.Proper medical evaluation -- done best by an allergist -- will include careful review of yourhistory and skin testing with food extracts (using a prick or puncture technique) to see whether anallergic mechanism is involved in your symptoms. In cases where skin testing might bedangerous, a radioactive allergy sensitivity test (RAST) may be appropriate. The RAST is alaboratory test in which the technician mixes a sample of the patient's blood with various foodextracts to see whether antibodies to food proteins are present in the blood. It is not as reliableas skin testing and is more expensive. A negative prick or RAST test indicates a low probabilityof allergy to the test substance. Positive tests, however, have much less predictive value [1].The only sure way to diagnose an allergy to a suspected food, food coloring, or other additive ischallenge testing in which the patient ingests either the suspected food or a placebo [13]. Thismay be appropriate if the patient's history suggests a food allergy but the skin or RAST tests arenegative. Because dangerous reactions can occur, challenge testing should be done in a hospitalor office that is specially equipped for that purpose.References1. Sicherer SH. Manifestations of food allergy: Evaluation and management. American FamilyPhysician 59:415-424, 1999. 2. American Academy of Allergy: Position statements -- Controversial techniques. Journal ofAllergy and Clinical Immunology 67:333-338, 1980. Reaffirmed in 1984. 3 Chambers VV and others. A study of the reactions of human polymorphonuclear leukocytes tovarious antigens. Journal of Allergy 29:93-102, 1958. 4. Lieberman P and others. Controlled study of the cytotoxic food test. JAMA 231:728, 1974. 5. Benson TE, Arkins JA. Cytotoxic testing for food allergy: Evaluations of reproducibility andcorrelation. Journal of Allergy and Clinical Immunology 58:471-476, 1976. 6. Lehman CW. The leukocytic food allergy test: A study of its reliability and reproducibility.Effect of diet and sublingual food drops on this test. A double-blind study of sublingualprovocative food testing: A study of its efficacy. Annals of Allergy 45:150-158, 1980. 7. Hecht A: Lab warns cow: Don't drink your milk. FDA Consumer 19(6):31-32, 1985. 8. Bartola J: Cytotoxic test for allergies banned in state. Pennsylvania Medicine 88:30, October1985. 9 Proposed notice: Medicare program; Exclusion from Medicare coverage of certain foodallergy tests and treatments. Federal Register 48(162):37716-37718, 1983. 10. Cytotoxic testing for allergic diseases. FDA Compliance Policy Guide 7124.27, 3/19/85. 11. Do you have hidden allergies? ELISA/ACT can help you. Undated brochure distributed in1993 by Serammune Physicians Lab. 12. The ALCAT test: A simple blood test for food and chemical sensitivities (Flyer).Hollywood, FL: AMTL Corporation, 1995. 13. British Advertising Standards Organization. Adjudication: Allergy Testing Service, May1999. 14. Sampson HA. Food allergy. JAMA 278:1888-1894, 1997. For Additional Information University of Iowa Virtual Hospital Quackwatch Home Page | || Other Dubious Tests This article was revised on June 7, 2000. ------------------ http://www.ibshealth.com/
 

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kwilim--I like the way you state your case for the middle ground here, but I want to comment on it a little. I think there's an important thing to think about in your message--the issue of "stop-trying." I once attended a workshop on my campus for people suffering from chronic illness. In that group of about 8 people (including me) there were people with diabetes and other ailments that are all better understood than IBS. During the workshop, we got into a great discussion about the difference between giving-up on finding a cure or treatment versus acceptance or acknowledgement of your condition. They ARE different. I HAVE NOT GIVEN-UP just because I refuse to lay-down a wad of cash for LEAP, and if Mike suggests otherwise, then I'll be forever 100% convinced he's out for my cash and nothing more.Here's the deal: Nobody (not Mike or flux or anyone) can argue that there is an element of IBS that often causes it to flare-up or get worse when you're stressed, right? Well, in my world, searching for answers (in the WRONG places) caused me considerable stress. I got upset about spending $250 on that worthless Great Smokies Stool Diagnostic...has ANYONE on this group benefited from that one? I got upset when candida treatments didn't work, and the more I took this desperate, never-say-die attitude, the worse I felt. My determination to find an answer where there wasn't one to be found caused more stress, and as a consequence, IBS than it was worth. That workshop helped me see that it's ok to keep an ear to the ground and see what new things come along (again, not giving-up), but temper that approach with accepting the fact that if this new thing doesn't sound right, or doesn't work right, that I can still live a reasonably happy life even with IBS. You know what? That approach has brought a reduction in the number of days of work I've missed in the last year due to IBS flare-ups. I still have the day-to-day pain, but it isn't as debilitating as it was when I was barking up the wrong trees.Finally, kwilim, you're right about the fact that you can match those criteria up to any IBS remedy out there. There's a good reason for that too. It's because they aren't scientifically proven, and most of them don't acheive adequate results for most people which is why we're all still here today. And it's why we'll all still be grappling with this issue until science works-out the nuts and bolts. You can criticize that mainstream approach all you want, but it brought an end to polio when the beliefs such as avoiding ice cream and swimming pools did not.
 

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Lisa-Well, you tried. I have to believe, though, that there are folks reading your post who might be inspired by it and try it themselves. Being ill for a long time can effect your thinking on many levels. I was going to try LEAP if my own diet changes didn't work, but they did. I just ordered their Rafani though. Want to give my liver a boost-2 years, basically, of chronic D had to have done some damage. Do you use this product, as well as the dietary changes?Thanx.
 

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I think that the best proponent LEAP could have for this testing would be a convinced SteveE. How about it Mike? Why don't you admit Steve to your testing program at no charge to prove to him that it works? I'm sure your organization could write it off as promotion, or such. Once he sees how great it is, he will be the best ad you could ever have. I mean, if we heard a testimonial from Steve there'd be no doubt left. Whaddayasay LEAP?
 

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Busy place.I knew it would be wise to look back at the Board for awhile...let me look at a few items here...there is just too much that I have replied to before...-----------------"In this case, Lisa's first post doesn't stick to the facts of her personal experience with LEAP. Instead, it come-outs swinging against flux."-----------------I think that the background is missing so you are interpreting it this way. I think Lisa did not come out swinging against Flux...he seemed to come out swinging on HER home board as if she was stupid for taking LEAP even though she was on 20 meds a month ago and now she is on NONE. And people keep talking about how anecdotal data are a sign of fraud to a patient who is looking you in the "board"eye and telling her story as if she is a liar. It appears, as is often the case, the relationship deteriorated from there.Gee, there's something new and different!--------------------------------------------------------What is all this about someone (Lisa) trying to "emotionally manipulate people...""..I could be seriously disappointed and out a big honkin' wad of cash with no improvement. (Sorry if honkin' isn't in your scientific dictionary.)"Throw down a gauntlet then cry foul when someone picks it up? I think you just insulted her and she knee-jerk reacted to what she felt was an affront, that is all. Something else not new here.----------------------------------quote from Dr. Barret:----------------------------------"In addition to cytotoxic testing and ELISA/ACT, the following procedures are not valid for managing food allergies:blah blah...and"The LEAP Program, in which the Mediator Release Test (MRT) is used to identify"delayed food allergies" and treatment involves dietary manipulation and possiblysupplements and/or herbs". ------------------------------------This offhand statement shows Dr. Barret knows nothing about the testing or the program, yet is declaring it to be questionable anyway. So that is his privilege if he wants to behave that way. He makes his name by doing this. Does not mean its true. In fact it is quite false.Also, those that actually read what I write about foods and offending-food identification know that what Dr. B writes regarding oral challenge and dietary log procedures is the same procedure I always recommend. I point out that testing was developed as a shortcut, if one wants to make the investment, but that substantial success can be achived on ones own if one has the wherewithal to do it right.Anyone who suggests otherwise about me does not read my posts, or is ignoring them for the convenience of pursuing their argument.Dr. Barretts statements suggesting a limited array of foods being implicated is out of date. Further it reflects the limitations of the method he describes, further demonstrating the need to develop an end-point in vitro analysis. The limitations of oral challenge usually elicits only the grossest findings of reactivity. And it is far from accurate at finding the balance of the offending foods.An he calls us quacks? He has a right to his opinion, but such statements are untrue and his opinion is hardly universal.However, of course, if a Board Certified Physician of another name should state that he has obtained excellent results with the LEAP protocols he is a charlatan regardless of his stature, competency, or knowing anything at all about him or her.Same old circular conversation-------------------------------------FREE TESTING CHALLENGE TO PROVE OURSELVES:I had this conversation with Steve before as I recall, but I recall it was private, so I guess since it is posted we can discuss the subject again in the forum.Q:"I think that the best proponent LEAP could have for this testing would be a convinced SteveE. How about it Mike? Why don't you admit Steve to your testing program at no charge to prove to him that it works? I'm sure your organization could write it off as promotion, or such. Once he sees how great it is, he will be the best ad you could ever have. I mean, if we heard a testimonial from Steve there'd be no doubt left. Whaddayasay LEAP?"-----------------I had this conversation already about giving away free testing to "prove" something. First, if I was to give it away, it would not be to someone with an axe to grind against Great Smokies (and I do not disagree with Steve and am no apologist for their testing but they have nothing to do whatsoever with SIGNET) who grinds it on my staff and patients without justification. Again. And who does not read what is written by independent doctors and their personal analysis, or believes what is written is a lie. Ergo I think the outcome of such an action to be predictable.Secondly you cannot just "give someone a test" for delayed-hypersensitivity to foods and additives to "prove it works". If the person has IBS it will come back test-positive, for sure. The person must adhere to a behavior maodification program...which is what we are talking about here which keeps getting lost sight of.To prove the Test itself works look at Dr. Kaczmarskis findings in milk-intolerant kids. The test claims are that end-point circulating immune reactions to foods or additives are detected. Dr. K found that to be true. The device discriminated the specific cell types and the specific milk fractions that elicited reactions in confirmed-by-oral-challenge subjects. It is printed there in black and white in the english translation of that published article posted at www.leapallergy.com. So one either BELIEVES what these doctors say they found when they used the test, or you do not. If not then they must be liars, or hallucinating. Ok. And if granulocytic cells and lymphocytes discharge their contents into the serum, and if one has some knowledge of what is being discharged and the effects of those chemicals, it is not too hard to see the results, and why, when the same results are applied to dietary modification in patients whith chronic digestive problems and their symptoms subside (see Dr. Pardells clinical report). So you either believe that those 80+ patients symptoms improved following this method or you do not. Steve does not. OK. Flux does not. OK. People x,y,z do not. OK. A coupke thousand people so far did believe it and have been tested and put on dietary plans persoanlized to their needs. OK. Thats the way it is.Which is why NOVA UNIVERSITY as I have said before has applied for an NIH Grant to study the LEAP application in IBS. They did this after reviewing the same results you all see from Dr. Pardell and Dr. K, as well as charts from our beta clinic site, and were excited by he results on functional bowel disease. Enough to ask us if it was OK to do a study as they feel it will be successful.If you understand disease management programs (which is what this is) you know that testing is a tool, one tool, in the program. There are number of them used in LEAP including but not limited to reviewing of dietary patterns and symptomologic matchings along with the test, lifestyle evaluation, and training and support in lifestyle modification on an obgoing basis. This is integrated with the patients normal and ongoing medical care.One must do everything in the Program to be successful. That is why it is called a Program not a TEST. Do you see anybody, including me, EVER say "Buy an MRT TEST?" No.Signet Diagnostic Corporation does not sell blood tests like some companies do. That should be self-evident. If it was what Signet did, we would just stick anybody with the dollars and give them their results and say "GO SIN NO MORE". That does not work, no matter how reliable or unreliable the test is.For success to occur, the person must commit to what is often substanial lifetyle change, esp. in their dietary habits. Compliance must be explicit and consistent to yield consistent clinical outcomes.A "FREE" medical treatment program, unless it is a "hit-it-and-quit-it" (take a test then take pills to get results) nearly Always fails, especially when dietary modification is involved. WHY? It has not value to the person who received it for free. No matter what they say. The value is not consciously assigned. It is a reactive process. there awlays comes a point where motivation must be tested and if there is no investment to weigh it against, the chips fall 90% of the time on "recidivism".The highest success rates in any LEAP patient symptomologic group is found among the patients who had to pay a substantial co-payment or even all of the cost themselves.When the going gets tough (and it will while going through withdrawal from ones reactive foods) the person will be tempted to cheat. If the person paid for the treatment program they are less likely to cheat, as they are instructed that symptoms will return and the investment will be wasted because if they do not follow the protocol they will fail to achieve their therapeutic objectives.Same as in "behavior modification as eduction".When I had 2,000 college students in my schools, the failure rates were inversely proportionate to the financial aid received: the less the student paid from is own pocket, the less the student adhered to the prescribed program which would lead to success (graduation), and the higher the failure rate. Eventually we learned to require every student to pay for a certain percentage of his or her tuition out of their own pocket, as accrediting agencies judged my schools on completiion rates. Completion rates went up dramatically when we did this.It has always been the same in other programs I have designed or implemented for pulmonsry rehab. The Black Lungers in Ohio who got a STIPEND lit up a cigarette every time I left their house. The COPD patients who GOT NO stipend, but had to pay for testing and therapy themselves, stayed off cigarettes and on their meds and exercises much BETTER when they got no stipend from the state, and were very conscientious when they were paying for it.Unless serious consequenes of morbiditiy or even mortality are involved, this is a universal truth in behavior change programs: the lower the investment the poorer the success rate.So I did, several years ago, give in to such admonitions as giving free servioces to prove the program worked a few times. And they were to self-proclaimed "highly motivated" people. Positive and interested. And I relearned what I already knew. The "funny" part is that when it happens, (they recidivise) the patient will turn around and blame the therapist, or the test, or the doctor etc. rather than acknowledge their oen falling-off the protocol.If you have been to the website and looked around you see some doctors are using LEAP in their practice. Do you know any doctors who give refunds if the patients treatment is not successful? I know no doctors who offer refunds if the treatment is not successful, since it is very difficult to guarantee most therapies. Can you imagine if doctors had a refund policy on their treatments?BUT to demonstrate our confidence in the high rate of success of this Program, in our HomeCare Program right there on the website it says that we warrant results.Oh my now we are quacks!?What is the "warranty"? Each patient in the HomeCare has an agreement with us: At the beginning of the patients program, the dietician and the patient will agree on what the therapeutic objectives are and what the patients program is going to be. Both agree to do their part.IF the patient does exactly what the patient is instructed to do at all times (ie: follows the plan), turns in the required progress reports (part of the behavior mod program and symptom tracking) and does NOT achieve the therapeutic objectives, the charges are refunded. So that is putting it where your mouth is as they say.The funniest part of this is that we are so confident that the vast majority of patients who follow the protocols will be satisified that we do what no other medically related services do...warrant it...and in so doing we are classifeid automatically as charlatans.Why? Because some disreputable people do not keep their warranty promises, therefor this is proof that thes doctors and dieticians are liars and charlatans. Someone even once posted to me the line from the FDA MEDICAL FRAUD post that follows me everywhere, something about never being in a stable address or somthing like that "thes companies are often gone when you go for yor refund"...like I have the laboratory on the back of a pickup truck and we move it around to avoid detection. LOL.And if I DID NOT do it, (offer any kind of specific performance promise) the question would be "IF IT IS SO GOOD WHY DO YOU NOT GUARANTEE IT?". Sort of that damned if you do damned if you don't concept. So I do it and be deamned. OK.Now that is not good enough either. If it is so good, give it away for free. If I do not, then I have proven I am dishonest, and all the doctors and dieticians are too. So, we have made it more risk free than any other approach you will find. If that is not interpreted as a reflection of my personal and our collective good intentions as health care professionals, then there is not much more for me to say that will pursuade the person who believes otherwise.Have A DF(E).MNL______________________ www.leapallergy.com
 
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Hi everybody! I'm relatively new to the board but have read alot of the posts and done alot of personal research into my own D-type IBS with a major amount of relief without drugs. WashoeLisa, Congratulations on improving your health!!! That is THE most important thing. Going from 20 meds to 0 is the way it should be! I am not a big proponent of medications for chronic digestive problems the simple reason that they aren't intended to cure but rather temproary relief. And that relief usually comes with unwanted negative side effects.I also agree with you that some people don't want to change their health for a variety of reasons. I remember hearing a story once about a mother who became a sick & bedridden invalid, and had no one to look after her except her only daughter. The daughter basically gave up any life of her own and attended to every need of the mother. After years and years of such attention and care, one day the daughter became gravely ill and died. Upon learning about her death the mother got up out of bed, made all the arrangements for the burial, and then lived out the rest of her life in a normal fashion. I definitely wanted to get rid of my IBS. My relief has come from identifying my trigger foods primarily through diet diaries/elimination/challenges. It took me a good 8-9 months to reasonably identify them but have had alot of success by avoiding oranges, yogurt, cow's milk, mixed alcohol (Bailey's Irish Cream - a holiday tradition and family favorite) curries, chocolate, coffee, tea, garlic, mushrooms, lentils, and lettuce. My IBS is, for all practical purposes, cured. I believe, through my own experience, through my doc's suggestions, and through what I've read, that diet plays a causative role in IBS, and should be one of the first things considered (along with stress).I read through the LEAP Website and it sounds pretty reasonable. If I had known about it before I did my elimination and challenges I may have done it. I figure the amount of inconvenience & suffering I had to endure during my diet diary period, was greater than if I could have just gotten to the bottom line more quickly. Also it doesn't hurt to have a money back guarantee if it doesn't work?SteveE. I can't tell if you are critical of LEAP or critical of diet as a possible cause of IBS. Can you tell clarify?Thanks
 
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