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Posted 4/23/2013 5:34 AM (GMT 0)
Hello again. I came here a few years back to talk about my experience with colitis and AMP. It's one that's been very positive for me and has been the sole treatment that's kept me in remission for over 6 years. But I recall the message didn't seem to be very well received; it seems many have tried something similar with little success. So maybe I can help clear up what I think would be the stumbling blocks based on the responses I found it got in the forum search.

First, I think the biggest distinction is what it actually is. Yes, it comes from aloe, but it is not simply aloe. AMP stands for Aloe Mucilaginous Polysaccharide. It is a particular chemical compound within the aloe plant/gel, to the exclusion of all other compounds. I use Floracel personally. But competitors exist in Digestinol and Serovera.

Floracel explains: "Approximately 8 gallons of fresh Aloe Vera is needed for 1 bottle of A.M.P. Floracel"
Serovera adds: "Aloe mucilaginous polysaccharides (AMP) are long chain sugar molecules composed of individual mannose and glucose sugar molecules connected together. These AMP molecules are but one of the approximate 200 ingredients found in the Aloe Vera plant." (emphasis mine).

[Urls removed, no marketing/sales allowed here]

So taking any "Aloe" or "Aloe vera" product will very likely not produce the same effect. It comes from Aloe, but it is not regular aloe as we know it. So I'm not surprised by the fact that different products have different results. To me, that's to be expected. Aloe Vera could be "like" AMP, but chemically, when you're removing 199 other compounds, that yields a totally different result in a chemical reaction.

The second main point is the time expectation that people reasonably have for these products. It's not an inexpensive treatment, and it's not FDA regulated (all natural -> not a chemical -> not covered by insurance). And it's not widely used for treatment (in comparison to drugs), so people tend to know less about it, and so testimonials seem like the only, perhaps dubious, source of validation. So people are right in wanting to know that it works and see results quickly. It's largely an unendorsed, word-to-mouth form of treatment. Unfortunately in my case, it just took longer to heal, perhaps longer than some are willing to try.

Although I have read testimonials where they say they've hit remission in a couple months, my personal experience was a much longer road. I suspect it's because I have pancolitis where my entire colon was inflamed, so I needed more time or a higher dose to be able to treat it all fully. And until the ulcers healed in the very end of my colon (which the 2nd colonoscopy a year later revealed had only about the remaining 8 inches inflamed), ulcers still existed to produce symptoms. Though certainly not as strongly or aggressively as when my whole colon had ulcers.

So to clarify, I had my diagnostic colonoscopy in December, I started treatment with AMP probably around March or April. And I had my second colonoscopy the following December. The first colonoscopy revealed that my entire colon was inflamed. The 2nd colonoscopy revealed that only the remaining 8 inches were inflamed. At this time, I was also taking Colozal (the full year), a multivitamin, iron supplements, and lecithin.

So I saw very steady progress as a result of one or more of any of those supplements. Which it was, I couldn't be certain. So by about February after my 2nd colonoscopy, as I started feeling better and better, I decided to find out which was to blame. I had 3 main contenders: the diet, Colazal, and Floracel. So what I did was (mostly) isolate which treatment I was taking to find out which was pulling their weight. It was a 6 week self-trial.

Weeks 1-2: Diet/AMP.
Weeks 3-4: Diet/Colazal
Weeks 5-6: Diet alone.

I knew the diet was minimizing the source of my symptoms, so I wasn't about to go off it. As I was near the brink of remission, I was kind of dancing on the edge towards being healthy. But if I had spicy/greasy/sugary foods, I would still peak in symptoms. So I could use this to tell which treatment could handle it.

On a scale of 1-10, 10 being perfectly regular regarding bowl movements, the first two weeks I was about an 8-9. The next two weeks, I was a 6-7, and the last two I was a 5-6. And I'm approximating here, as this is several years later. But what I distinctly recall was learning that it was the AMP that was keeping me in check. The Colazal had mildly better treatment than the diet alone. And the diet, while good at keeping me from spiking my symptoms, was no treatment at all. It was just an avoidance of the foods that caused the most grief.

And what confirmed this knowledge in my mind, is after that trial, I stopped taking Colazal. And I hit remission soon thereafter. And so long as I could afford it, I've been there ever since. For over 6 years. I still take a multivitamin, but that's it really. No Colazal, just Floracel.

So for me, it absolutely works. I must reiterate that it took me about a year to hit remission. So when I read responses where people say they tried it for a couple months and it didn't do anything for them, I kind of think, what noticeable difference might I recognize in going from a 3 to a 4? Plenty of symptoms, no real uptick in slowing the frequency. But the ulcers were slowly healing. But at that point, I might conclude that I've seen no progress at all, when in reality I might simply have been unaware of the progress.

So I feel like they just didn't commit to the process, and very likely would have had success if they had endured it a bit longer. I could resurrect a bunch of threads in hopes that they might see it to ask them how long they took it. But I thought starting a new current thread might be better, where I can also lay out my case. But indeed I'd like to know: if you took AMP and it didn't work for you, how long did you take it? And which brand did you use?

Because of my experiences, I've typed up a testimonial for Floracel to use, leaving my email address along the way, and have responded probably to about 50 different people. Because of this, I typed up a blog that detailed my story so that I didn't have to do it for each new person. And at the end of that post, I listed you guys as a knowledgeable group of fellow colitisians, or whatever we call ourselves...

I've updated my profile and put that post as my "website," for any who are curious about further details of my recovery. I also hosted the image of my colonoscopy (fun!), but it's hyperlinked out of respect for the sensitivity of others. I do fully recommend AMP (and I would further suggest Floracel, but they're probably all the same - Floracel actually split from Digestinol earlier back). I'd be more than willing to address any questions you have about it. Wish I had lurked these forums more often, so I could have responded to those threads asking about AMP. So that was one of the main purposes of this post. Sorry for the length.

Hope everyone is doing well, despite having good reason to be posting in these forums.

Cheers,
~Bryan

[Urls removed, no marketing/sales allowed here]

Post Edited By Moderator (iPoop) : 2/25/2015 6:49:18 AM (GMT-7)

Posted 4/23/2013 3:54 PM (GMT 0)
These studies do not back you up. Not saying you are wrong because my remission is an outlier according to medical studies also. But then all the studies that show improvement due to Asacol, 6mp, etc weren't true for me either.

www.ncbi.nlm.nih.gov/books/NBK92765/

www.ncbi.nlm.nih.gov/pubmed/15043514

I wish there was more statistical evidence and more studies done about aloe.
In one place I read that it is a laxative and the second link shows that there is a slight showing that it is slightly beneficial for UC but not statistically. Your post is the first person ever to mention it (this pill). Others have mentioned aloe vera juice with the laxative ingredient removed.

i'm glad it's working for you but it is very expensive at $1/pill and not available in small quantities to test. That tells me that the manufacturers know people will not see improvement in 30 days (as you've said) so they have to make all their money on the first sale. Not encouraging.

I won't be ordering it because every single supplement I've tried (2 dozen at least) has been a bust except for VSL#3 which has medical studies backing it's benefits and I have gotten results too.

The first link shows the benefits of aloe vera for topical use on skin. They need to do more studies for internal use.
Posted 4/23/2013 4:51 PM (GMT 0)
I agree, they don't back me up. But nor do they even address my post and my recovery. The first link merely approaches the realm, but never gets to its heart:

3.6.2.4 Ulcers and Inflammation of the Gastrointestinal Tract

Aloe vera preparations are widely promoted for the treatment of gastrointestinal disorders, including ulcers and inflammatory bowel disease, but evidence of their effectiveness is inconsistent. In 1963, clinical evidence of the successful use of Aloe vera gel (administered in a heavy liquid petrolatum emulsion) was reported for the treatment of 12 patients with peptic ulcers (Blitz, Smith, and Gerard 1963). In a 3-month randomized controlled trial of 58 patients with irritable bowel syndrome, no evidence was found to suggest that Aloe vera has any beneficial effect (Davis et al. 2006).

A recent attempt to formally evaluate the efficacy and safety of Aloe vera gel in the treatment of ulcerative colitis produced encouraging, although not conclusive, results. In a randomized controlled trial of 44 subjects with mild to moderately active ulcerative colitis, the oral administration twice daily of 100 mL Aloe vera gel to 30 subjects for 4 weeks generated clinical remission and improvement more often than in the placebo group (14 subjects); however, despite positive trends the results failed to reach statistical significance. The simple clinical colitis activity index and histological scores showed small statistically significant improvements in the Aloe vera group. Six patients (20%) who were given Aloe vera gel and three patients (21%) who were given placebo withdrew from the study because of deterioration or a failure to improve sufficiently but were included in the statistical analyses. The Aloe vera preparation used in this study was reported to contain a high proportion (>95%) of Aloe vera pulp, and the dose administered was the maximum recommended by the manufacturers. No adverse effects were observed during the trial, and the authors note that a higher dose may have been more efficacious and suggest the need for further, larger controlled trials of Aloe vera gel in active ulcerative colitis and in the maintenance of remission (Langmead et al. 2004).

So one study was done in the 60s, as a "gel (administered in a heavy liquid petrolatum emulsion)."

So for the gel, we add 199 other chemical compounds. And who knows how many more for the petrolatum emulsion. This is in no way evidence against any one particular compound in that 200+ chemical compound slurry. And despite that, it still showed a slightly positive correlation.

As for the 3 month controlled test, and your second link, they both deal with Aloe Vera, not Aloe Mucilaginous Polysaccharide. And the 2nd link you provide, under "Methods" states they deliver this watered down version to:

1) random patients
2) for 1 month.

Concerning point 1, what type of colitis is it, and thus what condition is the colon starting out with? How severe and how far down the colon does it travel?

en.wikipedia.org/wiki/Colitis#Types

And concerning point 2), my remission was a long journey of concentrated AMP. Neither documented trial examined a longer term approach to such a chronic disease. AMP doesn't mask the symptoms. It treats the underlying causes. It heals/removes the ulcers. You don't just try it for a week and the ulcers recover instantly, thus eliminating all symptoms and you're cured. Because AMP doesn't mask the symptoms, as long as ulcers are present, your symptoms will be present.

So if they want to do a better job in evaluating the claims of AMP, they ought to evaluate the claims actually being made. The claim is that it's healing the ulcers. If you do not allow enough time to sufficiently heal them, you will of course end up with results that confirm this, every time. Did they perform colonoscopies to each of the patients and individually measure each of their progress based on a rating of their colon walls? Or did they just say "patient still has diarrhea and explains they don't feel better. Inconclusive!" Because indeed, it will be every time, if that's the case.

So I wish they had more research too. Because they don't, I'm speaking up. 750,000 Americans suffer from colitis. An equal amount suffer from Crohn's. And I can only imagine how many more have it world wide.

I have been in remission for over 6 years. And when I run out of money and AMP, I start to relapse (after a few weeks). I would love to submit myself to a clinical trial. I want this documented, analyzed and discussed. Mine is a terrible disease, and so speaking out about my recovery when it seems there's few success stories to be had seems like the least I can do.
Posted 2/25/2015 3:47 AM (GMT 0)
Please don't buy this and other related products. Sending money to a children's hospital will help your colitis just as well and actually benefit something real.

After reading about the healing properties of aloe Vera (the plant reduces inflammation; it's fine when you're in the jungle and need something for rash or burn and it's in a a lot of product - those gels used for sunburns, etc) one can be tempted to try it for our conditions.
I heard about a cousin who 'has UC and drinking the juice cured her'. I tried a Lilly of the Valley (more pure than most and uses only the inner gel - the outer leaf causes diarrhea). I used it while not flaring but did enter a flare and found out years later that the cousin actually had IBS not IBD and was using other prescription meds. So she wasn't up front about what actually helped. She discontinued the juice and actually got much better. Some people with mild-to-moderate ulcerative colitis who drink aloe Vera juice have reported reduced symptoms. This is anecdotal. Anyone with Crohn’s disease or ulcerative colitis should be cautioned that aloe Vera, when taken orally, also has a laxative effect and thus can make symptoms worse.

In addition, it has qualities of an “immune booster" so person with Crohn’s disease or ulcerative colitis should be careful about treatments that can boost an already overactive immune system.

So I still hadn't known the truth about the cousin's IBS and the juice not help and looked into it further and found testimonials concerning this AMP Molocure. It's since changed names and other marketing firms have also profited unfairly from it off us desperately Ill folks.
A.M.P did not reduce my inflammation during the beginning of a flare and the flare continued to get worse while I used it. In addition I tried it again (had a lot on hand and figured I was just too much in flare condition for it to prevent inflammation but did again flare having to eventually go towards steroids for remission. It doesn't work.

I found it actually more harmful and worsened my symptoms.
Posted 2/25/2015 4:10 AM (GMT 0)
You should run away from almost any product that uses testimonials. It is just another word for "lies". I have found that reviews of products on legitimate websites such as Amazon are much more useful and these should include good, bad, and moderate reviews. Even the worst product in the entire world can come up with 10 testimonials to put in their lierature, assuming they are even legit testimonials in the first place.
Posted 2/25/2015 6:02 AM (GMT 0)
Gary, I bet if I would have run away from this, I would have had my colon removed, or failing that, bled out by now. My testimonial is my experience with UC. I've been in remission for the greater part of 10 years, as long as I've been able to afford the AMP.

Skepticism is well encouraged. But you've rendered your verdict ("lies") without any evidence. And I can attest to them putting up my two testimonials in full, as well as paste many of the 50+ email exchanges I've had with others about it that resulted if you wish.

I think I need to make a youtube testimonial to help reach the skeptics. There are over 750k Americans who have colitis, and another 750k that have Crohn's. This has both certainly and positively changed my life. Why should I not be trying to help those who have suffered as I have, and worse? Just look at your medicine count, for example. If it works for you, and you're problem free, that's fantastic. I don't know that that's the case. And I don't know what side-effects might be building up along the way. And remembering to take each as prescribed on a daily basis ... could at least be easier.

At the moment for me, I take 6 Floracel once at night (3 is maintenance, 9 is active treatment. I should be at 9, but I'm drawing it out a bit due to finances). And possibly an immodium. And I'm at about 80% to remission. That is, I have about 1 BM a day that's mostly well formed with light to no blood, and light gas/cramps as produced from a lax diet. I mostly eat well. But I'll also have pizza and drinks, which is typically when I still have problems. And I've been getting better since I've done more to curb the diet and have increased my dosage.

Again, it's good to be skeptical. As an atheist, I endorse that approach 100%. But what you want is evidence to support claims, rather than rendering any claim you think suspicious as false. This is why I left my email on the testimonials to talk to people who have questions. And you can ask me questions here or email me at inflameszealot#hotmail.com (I'm hoping that hash tag will filter out bots - replace it with the standard @ sign.) I sympathize with being doubtful. It's not cheap. It's online. It's not widely endorsed by the medical community. What are the odds it helps most IBM related diseases as it claims?

Those odds look long. But I've had long periods of remission on nothing more than 3 a day. And I'm getting close to being back there again. I would work as a spokesman for them if I could. And I will endorse them until a cure has eradicated it (though probably likely my death will come first). I'll try and get that youtube testimonial up sometime this week. Thanks for the reminder and motivation.
Posted 2/25/2015 6:05 AM (GMT 0)
I agree Gary.

Bryan has a website where he posts his personal experience about this AMP and references Healingwell and says, 'I originally went there looking to share my story about Floracel as I've done with the testimonial, and now here, and for the same reasons. However, despite their vast knowledge and experiences, I was met with a tepid welcome. They do not seem to even consider the idea of taking AMP. Or at least not 4 years ago-ish, when I visited there. Despite that, I think it's a great resource. They also have forums for lots of other disease, including IBD and Crohns, which you can find here:"

Bryan: I read your story and am not impressed. I believe it could cause great harm by convincing desperate people with real diseases to waste money on AMP and not listen to their GI's.

Long ago I was one of those desperately sick individuals and actually tried AMP. It will not help beyond a change in diet, reduction in stress and any placebo effect. When I bought into AMP I fell into the sales tricks, they sent me an educational video and 'special' diet (one that's not that particularly special in any way). The product is a cure-all for 'digestive problems and diseases and other GI issues". I'm not a testimonial type of person but when I tried it we didn't have all these studies easily accessible using Google and other. It's so easy to see now that this is silly but am just posting here again to be sure I make added efforts to convince anyone not to try it.

Your testimonial is that you have pancolitis, was on Colazal and later Canasa. while on Colazal you decided that this AMP product would be a great choice over what your GI recommended. Not only that, you stopped your GI's meds and experimented with diet and AMP and Colazal and found AMP and their diet to be the best to get you into remission. 6 years in remission (many go longer btw with no meds and I went many years at first without med fyi).

The number one issue GI's have with patients of IBD is them choosing not to follow their scientifically proven and FDA approved meds (following stringent safety protocols before being approved for use by the general public). You are trying to convince people to stop a safe anti-inflammatory and purchase this AMP instead; that's offensive to me quite honestly.

I will make it my goal to prevent folks like you from only getting their testimonial heard as I truly believe you'll do more harm to more people than you realize. That bothers me.
Posted 2/25/2015 6:30 AM (GMT 0)
Burli, your concern is noted. I have a lot of respect for scientific endeavors. I am gearing up to go to grad school to get my MS in chemistry. My story isn't novel-worthy. It's not a page-turner. It's simply what I've been through and how I've overcome suffering with UC. I'm not sure I need to impress an audience to recommend to them what works for me.

I don't know what length of time you tried the AMP for, but it does NOT control/mask symptoms. It heals ulcers. It rebuilds the intestinal wall where there was inflamed tissues and holes. If your expectation is that during a flare where the ulcers are driving your immune system crazy, that taking AMP is going to remedy that in a couple days, you misunderstand its healing process.

I never got the video from them. Not when I first started, and not now. Yet they still send me the diet and breathing tips each time. I don't know why I haven't seen this video, or if you're using Floracel. My guess now is probably not.

It definitely helps way beyond a change in diet. The change alone in diet did the least in terms of helping out. It was better than no diet, for sure. But a diet and colazal was better. But a diet with AMP was the best, hands down.

People with UC go years without treatment in remission? Wow, lucky them. Which types of UC? My symptoms seem explicitly linked to my diet and how well I've taken care of myself in the past few months. It's like an oil tanker. If I let myself go, it slowly deteriorates. If I start taking care of myself, it slowly gets better. I've never had "flares" that come and go. I have consistent ulcers that prevent me from absorbing nutrients properly, causing gas and bloody diarrhea. Or I have none of them, and then it doesn't matter what I eat.

True, the diet isn't particularly special. It eliminates problematic foods. Roughage, alcohol, spicy, greasy, fatty foods. The things that typically cause diarrhea. You simply want to slow digestion up as much as possible and give your body lean, simple, easy natural foods to break down without causing too much of a fuss. It wasn't customized by Rachel Ray.

To clarify, only during that 6 week trial did I abandon my GI's orders. I was on both of them concurrently all the way up until that point, and through to my remission. Once I hit remission, I gave up everything else and just kept with AMP.

"FDA" = FOOD and DRUG Administration. Aloe is all natural, and is neither a food nor drug. Unless they make some special effort to consider it, it does not fall under their jurisdiction and will never have their approval or consideration.

And I am not dissuading anyone from using what works. If they're happy with what they have, that's great. I took Floracel WITH Colazal AND Canasa. So I would suggest to purchase AMP also. Beyond that, I can't help it if you are offended by my sharing my story to help others. I recognize and appreciate your concern, but couldn't care less about your hostile attitude about it. If you knew me in person, you would know it works. You would personally know my story. And you'd be wondering why I wasn't doing more to help others.
Posted 2/25/2015 12:00 PM (GMT 0)
I wasn't addressing any particular product, just making a general comment that there should be major skepticism regarding products that offer testimonials. They are extremely one sided propaganda tools and negative comments on the product are not allowed. No product anywhere provides the kind of results that testimonials imply. You can have a product tried by thousands of people where thousands either saw no benefit or even got sick and these companies can still scrape up 10 people to write positive testimonials. I personally know a doctor who was paid tens of thousands of dollars to write a testimonial for a weight loss product that he knew nothing about but it sure looked good for the product to have a testimonial from a doctor. The only products worth considering are products that can be bought anywhere and who offer product reviews, both good and bad - not just one sided testimonials.
Posted 2/25/2015 12:23 PM (GMT 0)
Yes of course they are extremely one-sided. I can't imagine a company publishing someone bashing their product. Especially considering the already massively uphill battle they must face. Fair enough.

This is partly why I've offered my email in addition. And I've spoken to a few over the phone, including one case ongoing currently.

What I worry about is the scale of the recovery period used for the people who haven't had any success. What was their starting condition; how bad was their colon? How long did they attempt it? How close did they follow the protocol to help limit diarrhea and give them the best shot at recovery while they were on it? After a 1 or 2 month trial, people can easily seem unaffected. I think mine took about 4 months before I started noticing considerable improvement. And about another 8 before I hit remission. But if your assessment is "I have bloody diarrhea at my starting point" and "I have bloody diarrhea after 1 month," and you conclude that it does nothing, you may well not be appreciating the length of the colon and what length of inflammation it takes to produce symptoms. It's important to reiterate that this doesn't mask symptoms. So ulcers are still producing gas/bloating/blood, etc, even if lengths of the colon are healing. So you unfortunately don't see the results you're expecting until the ship has turned around and heading back in the right direction, which is not a brief affair. And I don't know if the failed testimonies of those who only attempted it for a month fairly describe what the product would do, or give the consumers any confidence about it.
Posted 2/25/2015 12:47 PM (GMT 0)
Those are just sales tactics - remove people's objections. If you haven't had any success then it is either because you didn't use the product correctly or you didn't use it long enough to see results. It couldn't possibly be because the product didn't work so we don't allow naysayer's opinions and only put forth the testimonials of the ones who say the product worked - including the doctor who was paid tens of thousands of dollars for his testimonial. These companies have a fear of the truth and that is why they only offer positive testimonials and squash any negative comments out of existance because these people obviously didn't use the product correctly.
Posted 2/25/2015 1:48 PM (GMT 0)
With regards to sales tactics, we all know pushers of 6MP, Remicade, Humira, etc. do exactly the same thing. How about the fact that in clinical trials, Azathioprine has a success rate of about 56% and placebo has a success rate of 35%. That's a 21% difference and it's considered statistically significant.

http://www.ncbi.nlm.nih.gov/pubmed/22972046

Yet, along with it's cousin 6MP, it's still the treatment of choice before biologics. Should we say that Azathioprine is also big fat hoax because 40% don't achieve anything close to remission after 6 months?

A word to the wise: If anyone out there wants to spend the rest of your life waiting for a (more-often-than-not CORRUPT) governing body like the FDA to spoon feed you "safe and reliable" drugs for your condition then that's your headache.

Gary's been helped by Grape Seed Extract, so have I. For others, it does nothing. We could argue all day long about why that is or just continue to take it, for those of us who see some benefit. Personally, I believe the aetiology of UC is NOT the same for everyone since many things lead to the continued breakdown of the mucosal wall - emotional stress in susceptible individuals, hidden pathogens, MTFHR mutations leading to a flaw in the body's natural detox processes, etc. So what works for one might not be the answer for many.

However, since Bryan's seen a benefit by taking this supplement and has shared it, why give him grief? I've spent money on things that don't work, no big deal - thankfully, I found some things that did work. And I don't share a lot of that with my doctor because I know he's been trained with a very limiting world-view that doesn't support the idea of doing anything except offering drugs and surgery to stop symptoms.

I think it's important to remember that our condition isn't considered curable by the established authorities at the moment. It doesn't have a "take this and you'll be fine" solution. In fact, most UC studies on PubMed are crying out for more solutions because mainstream medicine helps only half of us. For the other half, nothing helps and removing an organ is the only option. For that reason, it really is up to us to find whatever works for us. This guy's found something that works well for him, I'd have no problem trying it if I hadn't yet found a stable remission. The comment about giving your money to charity, rather than spending it on supplements that MIGHT HELP YOU FIND LONG-LASTING RELIEF is just madness.

So in a nutshell Bryan, thanks for sharing your story. I hope it inspires everyone to search out some answers for themselves and take charge of their own health.
Posted 2/25/2015 5:10 PM (GMT 0)
Gary, what isn't a sales tactic is the result of my 2nd colonoscopy, almost exactly a year after the first. I was diagnosed in the middle of December of '04. Immediately I was given prednisone and colazal. Prednisone lasted about 6-8 weeks. And I didn't stop colazal until remission (except for my little experiment.) I added AMP around March/April. By about July/August, I could tell I was doing measurably better, though still far from great. That following December, the 2nd colonoscopy showed all but the last several inches of my large intestine was healthy, compared to an entirely inflamed colon the previous year. So the last several inches had yet to get much relief. It was obviously being absorbed earlier on in the digestive tract.

I was doing pretty well at that point, but I still wasn't in remission. I still had the usual symptoms and had to control what I ate. But are you saying it did not work because I still had diarrhea 7 months into my treatment? Was it ineffective? If it doesn't work for someone who only tried it for a couple months, is that more the "truth" than my experience? Is it impossible to consider that they didn't give it a fair shot? Is my remission on its suggested maintenance dosage purely placebo? As with its resurgence in its prolonged absence?

Kevin, thanks for the support. I appreciate it.
Posted 2/25/2015 5:47 PM (GMT 0)
There are all kinds of statistics available for meds - success rates and a myriad of side effects listed. In commercials you will usually find that more time is devoted to the listing of side effects than to the actual commercial itself. Let's assume for the sake of argument that supplements have no side effects (which is not always the case) so let's concentrate on success rates. With meds there have been many studies and you can argue from now until the cows come home on their legitimacy and Big Pharma's role in them or even the FDA's but the fact is these studies clearly show that whatever med you are talking about, it is only effective, in most cases, less than 50% of the time - usually much less than that. And, they also talk about all the possible negative side effects of their own product.

Now you take one of these products where they offer testimonials and all you get is 100% positive feedback and all dissension is silenced and, if it should happen to come up, this dissension is quickly spun into, "the product was taken incorrectly or not given enough time to work" and those viewpoints are set aside and not used. The product is implied to be 100% effective for everyone because negative feedback is not allowed.

So, in reality, who is being more honest about their product, Big Pharma who openly admits that their product does not work on everyone and has many possible side effects, or some website selling a product who only offers positive testimonials? I'm not talking about any particular product at all but strongly still advise anyone thinking about buying a product that only offers prejudiced testmonials to run the other way. If a product is worth buying then it will be sold by several legitimate places such as Amazon where you can read product reviews, both good and bad and I'm saying this as a person who has had more success with my UC using supplements rather than meds. Common sense should rule and if someone is hiding all the bad reviews and bad testimonials then they are afraid of the public seeing the truth about their product. Even Big Pharma doesn't do that.
Posted 2/25/2015 5:59 PM (GMT 0)

Kevin Watson said...
With regards to sales tactics, we all know pushers of 6MP, Remicade, Humira, etc. do exactly the same thing. How about the fact that in clinical trials, Azathioprine has a success rate of about 56% and placebo has a success rate of 35%. That's a 21% difference and it's considered statistically significant.

It is not "considered" statistically significant. It is. Judged against the variability within the drug and placebo groups, the difference between groups is beyond reasonably due to change/sampling. And the exact procedures (and in some cases the data) are available to the scientific community.

Testimonials are largely bullcrap.
Posted 2/25/2015 6:44 PM (GMT 0)
AMP has been around a long time, since at least when I started to use the internet for alternative UC treatments.

Somewhere around 1980ish.

I have taken aloe orally and found it to irritate.

Whether amp works or not don't know.

But I do know if you do not get enough plant polysaccharides into the colon that the bugs will

start to eat your mucus to get the sugars. This also can also be reversed by eating more dietary polysaccharides.

Old Mike

Posted 2/25/2015 7:38 PM (GMT 0)
Big Pharma doesn't hide negative reviews?
http://www.newsweek.com/2014/11/21/medical-science-has-data-problem-284066.html

DBwithUC - By that logic, if a 21% difference from placebo really is statistically significant then hypnosis and homeopathy should be on the treatment list for UC!

I don't have a problem with meds. I was more than happy to take my steroids a couple years back to get out of a flare and I'd recommend anyone else do the same. But seriously, the worst that could happen with a product like the one Bryan talks about is that it doesn't work - since it's relatively cheap, why not give it a try? Nopal sounds like a pretty amazing natural anti-inflammatory, who knows - could be a great steroid-sparing treatment for lots of people on here.
Posted 2/25/2015 7:57 PM (GMT 0)
Kevin - we are not even talking the same framework. I don't know what "logic" you are referring to to make your ridiculous statements. There has never never never been a clinically controlled study whether either hypnosis or homeopathy was compared to placebo and had a statically significant difference of 21% greater effectiveness.

There are just junk words coming out of your keyboard.

You may want to know why the placebo varies in studies form 9% to 30%, which is a good question. I suspect some of the variance is the entry criteria and how ill people are. (You have also focused on one of the highest placebo rates from the range generally reported.)

You may wish that an available drug was 70% more effective than placebo. But few UC drugs are.

Bottom line, even after controlling for people who could have possibly think themselves better during the study, or who could just have improved by the vagaries of their disease, we are taking about 1 in 5 chance of significant improvement or remission. People are willing to pay for that 1 in 5 chance.

Homeopathy does not even have a 1 in 5 chance of helping when the placebo effect is not controlled.

You can't just decide what statistics and math means. I'm done talking to you.
Posted 2/25/2015 8:55 PM (GMT 0)
Kevin: Big Pharma never claims to have a drug that works 100% of the time. Study after study after study, even those financed or done by Big Pharma, never claim to have a 100% success rate. Not even close. They tell you up front that their drug will not work on everyone and they tell you up front that there can be many side effects. All we get from these testimonial places is 100% positive and they squelch 100% of everything negative. I agree with you that Big Pharma really can't be trusted, which shows you what I think of these testimonial places that are even worse than Big Pharma. Big Pharma are angels compared to those hucksters who don't have half the scruples that Big Pharma does. There's a reason why these places squelch all negative feedback - all they care about is getting your money using false and misleading advertising while the top dog lives in the adjacent lot to the Big Pharma executive and has a yacht docked at the same yacht club.
Posted 2/25/2015 9:08 PM (GMT 0)
That's a balanced point Gary - truth is, whether mainstream or alternative, companies will bend stats to make their products look favourable.

The bottom line for me is this: no harm in trying "alternatives" to gain remission, particularly if your current prescriptions are failing you.
Posted 2/25/2015 9:55 PM (GMT 0)
I'm glad this thread has turned around and some agreement has been found. I've worked in marketing before and know the games they play to make anything sold for profit sound fantastic. Truth is stretched, bad points are left out, data is censored to make figures look better than actual, as the goal is to spur an action which is simply buy my product or service (whether it is a supplement, prescription drug, vacation, car, etc.). "Works for some" is never a good marketing slogan haha. The cause of uc isn't known making it hard to design anything to work 100 percent for it. And the other fun fact is our own genetics intefere with what works with some but not others (our genetic diversity causes some to experience side effects, adverse allergic reactions, or a treatment to outright fail, etc.).

Waving Big Pharma conspiracy flags around isn't going to win much favor but attract flaming and suspicion here and elsewhere. The same points could have been expressed more effectively without it.

Cheers,
Posted 2/25/2015 10:25 PM (GMT 0)
They tell you up front that their drug will not work on everyone and they tell you up front that there can be many side effects.

I'm not so sure about this. That humira or crestor commercial I get shoved down my throat every single day seems to hint otherwise. The illusion of someone going about their day with no hassles or side-effects, and living a normal life is pretty deceptive advertising to me. After being on both humira and remicade, I can assure you that biologic drugs do anything but what they show in the commercials, pamphlets, posters and so fourth.

Similar to food marketing, pharmaceutical companies do indeed have departments dedicated to advertising the drug as the next big thing. It's all but a certainty that patients, despite not knowing the true efficacy rates of biologics, are going to push their doctors for the drug after seeing the commercials. It's like a vulture preying on dead bodies. It's just plain immoral and wrong.

I don't think television audiences are qualified to watch drug commercials. Independent third parties need to verify the real efficacy rates of drugs before they are pushed like that, since a drug study is 5 times more likely to be positive if it is funded by the manufacturing company.
Posted 2/25/2015 10:35 PM (GMT 0)
I agree that waving Big Pharma conspiracy flags isn't the way to go. Which is why I haven't done that approach. However, it is worth noting that there are systemic problems with the industry, including over-prescribing and general price gouging:

Last Week Tonight (With John Oliver) talking about Big Pharma reps courting docs.
youtu.be/YQZ2UeOTO3I (HBO, so crude language present, although censored for youtube).

3 separate interviews from The Daily Show With Jon Stewart talking to Steven Brill who had an excellent article investigating where medical costs come from and how we're not in a free market system with health care.
thedailyshow.cc.com/videos/7n3uy3/exclusive---steven-brill-extended-interview-pt--1
thedailyshow.cc.com/videos/kqwpe9/exclusive---steven-brill-extended-interview-pt--1
thedailyshow.cc.com/videos/d9zyrw/exclusive---steven-brill-extended-interview-pt--1

That aside, I'm generally in favor of prescription meds. And I'm not dissuading their use.

Re: testimonials. I readily admit there is an imbalance in the tone of the testimonials presented on their site. But recovering from a greatly inflamed colon is not simply a process of taking meds where anyone can do it. I was on a restrictive diet for months, cutting out all foods that exacerbated my symptoms. No softdrinks, no alcohol, no sweets, spicy foods, greasy foods, dairy products. For months. While using the immodium as recommended. And it worked.

Getting into remission is a long, trying endeavor, maybe like building a shed. Putting up testimonials from people who just took the meds for a month or two without much effort in controlling their diet and so couldn't discern an improvement in their symptoms is like having people who couldn't fasten the handle to the door saying the process is broken.

What WOULD be useful information is how many people gave it a legitimate shot - controlled diet, long term application, and colonoscopies before and after, and didn't have any measured improvement. I would welcome those (or similar) testimonials all day long. That's obviously a tall order to ask of. But that would reveal valid concerns about the process.

Post Edited (_Bryan_) : 2/25/2015 3:38:42 PM (GMT-7)

Posted 2/26/2015 12:44 AM (GMT 0)
Bryan (not attacking you – only questioning some of the logic you used in your self-administered ‘trials’ and the conclusions you arrived at where you’re convinced this product ‘worked’; what I am doing is balancing your 'endorsement with my own personal experience with this product). Seems only fair to me. I doubt many here have even tried it (only saw 1 other user who said it worked).

So, if it's working for so many then how is it not making more head way? I mean FMT took off like a bang and think of that process. This has been around since decades and nothing but testimonials.
Why universities and government studies are not picking this up for more extensive studies is beyond me. We're talking medical breakthrough and saving organs.

You wrote:
"FDA" = FOOD and DRUG Administration. Aloe is all natural, and is neither a food nor drug. Unless they make some special effort to consider it, it does not fall under their jurisdiction and will never have their approval or consideration.” You’d know that the FDA does regulate dietary supplement products and dietary ingredients and AMP states they abide by them. See FDA Dietary Supplements

I am sure of one data point and that’s mine and they are 0-1: 0% success rate (I can’t go by testimonials). I did when I bought into it originally and now am sharing my own experience.

It doesn’t work in my opinion. I would not recommend trying it. It’s extremely expensive and, I believe, it's a waste of money. I don’t agree with the science nor studies nor logic of the way they say it works.
I'm merely giving my testimonial and encouraging people to not waste money. How many people here actually bought this stuff besides me?

Bryan and another user in some other post I noticed. They have ‘thousands of testimonials over decades’ saying it works and only me saying it doesn’t. Who’s attacking who?

Bryan, I’m not bashing you for sharing your story on how this helped you, rather, I’m also providing feedback:expensive product, falsely raised my hopes, took up a lot of my time and made my life miserable for a while.

I am providing a balance to a reader who might want to buy it as I'm am actually concerned this thread, without my personal experience and testimonial, might cause someone to stick with this product instead of healing quicker using a better diet or alternative remedy along with their GI’s guidance, meds and advice.

If you try it maybe I can have you avoid the 6 bottles for $780 (that's taking between 3-9 pills a day; each bottle has 270 pills so with a disease they recommend 9 pills a day and so a 6 month's supply is $780). But they do bargain.

It’s been a long time but the price was extremely high back for me as well. First, I read up on it and nothing out there discounted it. There was no Burli out there I could ask questions of before trying it. I would have loved to had been able to learn from a person like that and question their state of condition and what other drugs they were on. There’s still only me who tried it and put criticism out.

I’m not blindly following every word my original GI told me (I found great doctors and still they know I question).

I was ‘sold’ that aloe Vera would help just that the last time I tried it I must have been too severe – that was my thinking and was reinforced by those at A.M.P. Molocure now AMP Floracel.

I called them (very polite) and they went through the material with me. It was very expensive BUT there was a ‘discount’ (the more you buy, the less per bottle thing; spend more to save less) so, with the discount, it was only expensive. I’m open to so many products in here talked about (I’ve tried almost all reasonable remedies except FMT) but this is one of those products which emphasized for you to ‘stay the course’ when your condition was, at that time for me, actually turning for the worse and that’s dangerous. They may be changing their tune but that was the literature and video and talk I got back then. Bryan's posts reinforce that by indicating it takes many, many months to work. Again, I just provide balance. IF you're going to try it then know it's expensive and will not take you out of a severe flare. IF you have mild symptoms then could it possibly help you? Maybe (I don't believe so but that might be the difference between Bryan and myself where I get severe flares throughout my colon and this stuff was like urinating on a house fire I guess). I chose urine because a garden hose might be eluding to the false impression I believe it works.

Bryan had a full, pancolitis flare and started AMP, Colazal and the AMP diet in Mar/Apr and by Dec only the final 8 inches of his colon was irritated (must not be bleeding ulcers like mine?). To determine if it was the diet, AMP or Colazal bothering him, he did his own trial over 6 weeks of every 2 weeks mixing two of the three together (stopped Colazal and only did AMP and diet the last two weeks and thus concludes bm issues were the result of Colazal and that it’s proof that all along it was the Coazal not helping the previous months rather actually worsening his colitis). Concluded it must be the AMP which worked.

Now I’m no doctor and especially not trained in medical research but I know so many of the factors which folks talk about (all the facets effecting the immune system be it stress, exercise, other physical activities, diet, illnesses (going back months and some you’re not aware of), allergies, age, etc. I’m just an engineer and that’s not enough flight rationale for me. There’s much missing with that statistical analysis and data set for me. It might be just me but and I am a critical thinker. One has to be.

Now having a little criticism of the AMP (not at you Bryan – this is not attacking you as a person unless you profit from the sales which you said you don't but you wish you could be their spokesperson:

One goes to their website and it can easily lure the desperate in: the healing properties of the natural plant extract of Aloe Mucilaginous Polysaccharide (‘it takes 8 gallons of aloe Vera gel to make one ounce of…’). Stop!; you had me at “aloe”. Concentrated aloe (this is it!) – I was very excited about it at the time.

Their video (came with a video – I guess since I ordered so much I got a bump-up ‘package deal’). It had real doctors explaining the biology and chemistry. They drew chemical formulas; long chains; impressive!

It did not help me. They told me it would in their literature at the time which is different now with disclaimers added since I tried it. They’ve backed off pushing you to stay the course I guess. The people I talked to pushed me hard to stick with it. I told them all about my conditions and they guided me on the amounts to take based on my symptoms. I continued to decline and they were adamant it took longer AFTER I already bought a little (which was still around $150). In all I probably spent close to $500-600. I’ll see if we still have any info on it in the attic (it’s starting to aggravate me again).

This isn’t just a trivial thing: the cost; the hope; the stress; expectations…1 bottle now costs $150. I recall getting an initial sales pitch about them costing around $49 (at the time) per month. A lot of money for me starting out where I was at that time in my life. When I talked to them I needed to take triple the dosage they originally told me because of my flare and they said it would start helping within 2-3 weeks. I kept getting worse and talked back and forth and bought more: 3 weeks nothing, 4, 5 (these are a lot of pills mind you and have gold flakes, rather, AMP and soy lecithin)

I recall talking to them and working some ‘deal’ (I was their deal).

'Yes'; I started it while starting a flare and used it as recommended (did I mention expensive pills – 8 gallons/once though). I continued to decline in health and called them about it and after the 6 weeks I stopped throwing good money after bad and put the pill bottles in the closet. Wife wasn't pleased to see that either.

After recovering and in remission I (just had to try to be certain) thought now maybe if I’m on it, while healthy, then I’ll stay in remission and the healing properties. No; nada; did not work to keep me from flaring even when I took them while healthy.

I've tried a lot at a lot of different times.

I was on the stuff while in complete remission (I had those things in the closet; paid a lot for them). I’m not inclined to say they caused my next flare but that was proof they don’t work for me. Steadily on them and still started a new flare.

I healed again per my GI’s help.
Posted 2/26/2015 2:02 AM (GMT 0)
I certainly hate defending Big Pharma, as they don't deserve it. All I can say is that anyone selling a product offering testimonials should be very highly suspect. I have been greatly helped by both the digestive enzyme DAO and grape seed extract, as well as VSL#3. With all three there are independent legitimate sources of information and studies on them done by places other than those selling it. All of them can be bought from several different sources, many of them accepting reviews on the product, both good and bad and it is obvious that none of them help everyone and don't claim to. There is no doubt in my mind that aloe vera can help some if nothing other than the placebo effect but it is taking advantage of the desperate and ill to market it with false and misleading information and providing only glowing testimonials while conveniently silencing the remarks of those where it did not work.
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