Ben Carson, Mannatech and me

A lymphoma patient survives 19 years, thanks in part to maligned supplements

During the media scrutiny last year of the relationship between Dr. Ben Carson and Mannatech, the controversial Texas-based dietary supplement company, multiple news organizations breathlessly pronounced that Mannatech’s products are snake oil.

The negative press about Carson’s involvement with Mannatech is understandable. After all, in 2007 the company was fined $7 million by then-Texas Attorney General Greg Abbott for making claims that its products can treat and cure various diseases including cancer, autism and cystic fibrosis.

While most journalists covering Carson’s characteristically dishonest and bizarre explanation of his relationship with Mannatech know presumably nothing about the company beyond what they read in 9-year-old news clips of the Texas case, that didn’t stop many of them from concluding that Mannatech’s products are worthless.

I looked but did not find a single journalist who cited any of the 17 human clinical trials published in peer-reviewed scientific journals on Mannatech products, let alone the fact that 12 of them were double-blind, placebo-controlled studies — the gold standard for American drug companies for product validation.

Granted, most of the trials, which were for a variety of outcomes including cognition, metabolic function, immune system enhancement and so on, were relatively small. The evidence is spread rather thin. But the trials are legitimate.

 
 

I also looked but did not find a single journalist who talked to any one of the 3 million people who’ve taken Mannatech products, including me. Yes, I’ve been drinking the Mannatech Kool-Aid, if you will, off and on since 2000. I’ve never sold the product, and I’m not a fan of multilevel marketing, which is the company’s business model. But I think its products have improved my health. I certainly can’t prove it, but I believe Mannatech has helped keep me alive.

I’m a three-time survivor of stage IV non-Hodgkin’s lymphoma. When I was first diagnosed with cancer 19 years ago, my original oncologist told me I’d live three to five years. Happily, I’m still here, but I’m out of remission and back in the cancer trenches.

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I have multiple health issues now, and I’m in “watch and wait,” which means we’re keeping an eye on the cancerous lymph nodes in my abdomen. If they start to grow faster, or I show other more intolerable symptoms, or more cancer appears in other parts of my body, then it’s time to talk about treatment.

Throughout my cancer adventure I’ve been an outspoken supporter of pharmaceutical companies. I’m alive in part because a 1999 clinical trial of a then-experimental radio-immunotherapy cancer treatment that killed my cancer, as my scans and blood works showed and my doctors confirmed. Drug companies don’t have an easy task. It takes many years and millions of dollars to get products from the lab to the marketplace. There are of course many prescription drugs out there helping many people.

But in our never-yielding quest for good health, it makes no sense to limit ourselves to patented drugs to improve our health and keep us alive. To look only through that narrow window is shortsighted and, thankfully, increasingly uncommon, especially among cancer patients.

As a global advocate for cancer patients, I’ve written a lot about dietary supplements and their uneasy coexistence with prescription meds. I’m pro both. In my book on lymphoma survival, "Hope Begins in the Dark," which is in 10 countries and has been published in several editions, I write about the importance of embracing the best of both worlds: “traditional” and “alternative” medicines.

While navigating the “alternative” landscape, it’s challenging and exhausting to have to constantly differentiate between legitimate science and the charlatans. But it is naive and preposterous to suggest that a natural supplement cannot improve our health, boost our immune system or help fight disease.

 
 

 

Dietary supplements are not allowed to make such claims. But mark my word: The future of medicine will see a much more profound free-market integration between dietary supplement concerns and drug companies.

I started taking Mannatech’s products — specifically its Ambrotose formula — after discussions with nutritionists and a naturopathic doctor, none of whom had any financial stake in the company. One doc told me that aloe, which is a key ingredient in Ambrotose, has strong immune system-enhancing properties.

Aloe gel is a key ingredient in Ambrotose, but not the only ingredient. As I later learned, Mannatech scientists who developed Ambrotose were interested in the long historical use of aloe gel, but research on aloe has mostly been on topical applications, in treating burns and wounds, and thus not relevant to Ambrotose. What drew their attention to the aloe gel was its “mannose” content, which is what Mannatech calls a key glyconutrient.

I understand the widespread skepticism about Mannatech and its products. I’m aware that many scientists say Ambrotose and glycobiology have nothing in common. And I know that numerous scientists say there is no scientific evidence that glyconutrients prevent or cure disease.

Dr. Ronald Schnaar, professor of pharmacology and neuroscience at Johns Hopkins School of Medicine, reportedly said recently that as of 2015, “there’s no published studies demonstrating their [glyconutrients] clinical efficacy to prevent, treat or cure disease.” As for cancer, specifically, Memorial Sloan Kettering Cancer Center’s website states flatly, “Glyconutrients have not been shown to treat cancer in humans.”

But Mannatech doesn’t claim to prevent, treat or cure disease. If the company makes that claim again, it will likely be put out of business. And that is not what I believe the product has done for me. Well, not directly, anyway.

At a time when I was taking no other supplement and was not being treated for my cancer, my severe body aches virtually disappeared, my energy increased, and I was able to work longer hours and get back to playing tennis and even adult league baseball. I got sick less, and all the systems in my body operated at a higher capacity.

I don’t know if it was the Mannatech that did all these things, but simple deductive reasoning suggests it was. I have no other explanation. I absolutely do not believe it had any placebo effect.

But of course I cannot prove any of this. And there are studies, albeit small ones, showing that Ambrotose powders can improve the body’s immune system, which of course can help us fight cancer. Mannatech is not allowed to make that connection. But I am.

Utterly legitimate scientific studies also show that Ambrotose powders can help support cognitive function, support the growth of beneficial gut bacteria, and promote gastrointestinal health and proper digestive system function. And if there’s one thing I have learned from my many years as a cancer patient advocate and seeker of truths about staying healthy, it is that the gut is the key to health. It’s where our nutrients are absorbed, or indeed not absorbed.

I am unmoved by the Mannatech critics who point out that the company funds many of these studies. Drug companies do the very same thing. That is standard operating procedure for pharma. Is there a different standard for dietary supplement companies? I would say yes.

I think people who’ve been diagnosed with cancer or any other potentially fatal disease are more likely to keep an open mind about so-called alternative medicine, including dietary supplements. Based on my experience, there should simply be more integration in your doctor’s office between nutritional-based supplements and traditional, standard medicines for cancer treatment. I think cancer patients, at least some of us, are more likely to believe that the Food and Drug Association and American Medical Association should “tear down that wall” between patentable drugs and dietary supplements that might help a person heal.

This fervent call is less about desperation or fear and more about a wisdom you gain when you’re told you might die. At that moment, your entire perception of health and wellness change forever, and your mind and heart open.

Meanwhile, my respect for Dr. Carson curiously jumped, if only by a hair and only for a short time, when I learned of his association with Mannatech.

The fact that Carson, a doctor who was fighting advanced prostate cancer himself, would admit to taking a dietary supplement to address his health was refreshing. But almost immediately he started lying about his financial relationship with Mannatech.

 
 

It’s unfortunate that of all the doctors in the nation who could speak out in support of dietary supplements, it had to be Carson, who has a real problem with science, reality and the truth.

American physicians, with some exceptions, generally dismiss natural supplements. And the FDA pursues dietary supplement companies like Mannatech, even though it does not have much direct power or jurisdiction over them, thanks to the Dietary Supplement Health and Education Act of 1994 (DSHEA), which defines dietary supplements as food and not drugs.

DSHEA grants the FDA the authority to regulate dietary supplement labeling and company claims about the product and holds supplement manufacturers to “good manufacturing practices.” But it does not require dietary supplement companies to go through the drug approval process. Some see DSHEA as a godsend, others as a curse.

The way I see it, the FDA’s scrutiny of dietary supplement companies is not so much because it cares about people’s health, but because it’s protecting the status quo of the pharmaceutical industry. Estimates vary, but even the most conservative estimates of the natural supplement industry’s worth in the U.S. alone is several billion dollars. The FDA is staffed by doctors, pharmacologists and others (many of whom have worked in the pharma industry) who I believe are predisposed to favor traditional pharmaceuticals.

As a global cancer patient advocate, author of two books on cancer and journalist who’s written extensively about cancer, I’ve met literally thousands of cancer patients over the last 19 years. And many of the patients I’ve met take dietary supplements, of all kinds, often without telling their doctors, or against their doctors’ advice.

When I called Mannatech’s media representative, Mike Crouch, who I’d never spoken to or even heard of before the Carson story, he told me that the company took the Texas case very seriously and works hard to stay in compliance with all regulatory mandates.

“We work at making sure we follow the law,” Crouch said. “We have new leadership, we have changed a lot since those days. Our oversight and compliance is very strong now.”

Crouch added that Mannatech’s customers aren’t too concerned with the negative publicity surrounding the company’s association with Carson.

“We have tried to be as transparent and helpful with the media as possible. That’s all you can do,” he said. “I can’t yet tell you about how this [Carson coverage] has hurt us as far as sales, but our customers are concerned about wellness. What the wonks are saying doesn’t really resonate with our customers. We just hope people understand that we are a company that has put all of that behind us for several years now. Every day we work hard to be the best product, and to be as scientifically valid as we can.”

Dr. Benjamin Carson, director of pediatric neurosurgery at Johns Hopkins Children's Center, holds up a plastic model of the skulls of German conjoined twins Lea and Tabea Block at a press conference at the hospital on Sept. 16, 2004. (Joe Giza/Reuters)
Dr. Benjamin Carson, director of pediatric neurosurgery at Johns Hopkins Children's Center, holds up a plastic model of the skulls of German conjoined twins Lea and Tabea Block at a press conference at the hospital on Sept. 16, 2004. (Joe Giza/Reuters)