Last month Katlyn, a Massachusetts mother of a 2-year-old daughter, posted a worrying message in a private Facebook group that promotes and sells a dietary supplement that its members believe is a cure for a wide range of ailments, with group members claiming it can help everything from cancer to autism.
“I started my 2 yo daughter on both the drops and the spray on Sunday,” Katlyn wrote. “Monday morning she had a pretty painful looking white head above her top lip which I didn’t think much of until the next day she had another one on the side of her middle finger. She’s never had anything like this before. Could this be a detox symptom? They are painful too she [flinched] when I touched them.”
The product Katlyn was giving her daughter was Pure Body Extra, or PBX, a zeolite-based detox treatment that claims to be able to remove heavy metals from your system. Zeolites are a family of minerals that are often used in, among other things, cat litter. PBX is sold in two forms: as an “advanced daily cellular detox,” which comes as a spray, and as an “everyday gut and body detox” in the form of drops. In recent years, PBX has become a prominent “cure” pushed by major figures within the anti-vax community, who claim it can treat autism, despite the fact the product’s manufacturer states on its website that it is “not intended to diagnose, treat, cure, or prevent any disease.”
Shannon, another member of the 27,000-strong Facebook group, quickly responded to Katlyn: “Your skin is the biggest detox organ so yea you may find some new bumps and pimples. Body working out the toxins.”
Nikki, one of the two administrators of the group, agreed with Shannon and urged Katlyn to scale back use of the product but not to stop giving it to her child. Days later, Katlyn posted once again in the group.
“The first 3 days I did 1 drop then upped it to 2 drops for the next two days and she had horrible diarrhea,” Katlyn wrote. “I stopped it for the next 3 days and she still is having terrible diarrhea and really not wanting to eat. Is this normal?” WIRED has used only the first names of the members of the group to protect their families’ privacy.
Katlyn’s messages about painful and terrifying side effects experienced by children being given PBX by their parents are far from unique. Drenushë reported in the group that her 6-year-old was also experiencing diarrhea. Maria’s son had started “twitching” and was peeing more than normal. Julia’s child was “insanely irritable” after beginning the protocol. Brandi’s teen son had a major acne breakout days after taking PBX in spray form. Samantha describes her child having “complete toddler meltdowns” after taking it.
Parents in the group also share images on a daily basis of their children’s dirty nappies or the contents of the toilet, asking the group hive mind if they can see tapeworms or parasites within the images—part of a bogus claim that detox treatments can flush out parasites such as liver flukes from a child’s system.
This group is just the latest example of how the anti-vaxxer community has used platforms like Facebook for more than a decade to prey on vulnerable people by pushing bogus and dangerous pseudoscientific products—especially those targeting children. These same communities have in the past pushed bleach as a cure for autism and during the Covid pandemic promoted ivermectin as a treatment for children. Despite repeated exposés of these groups, they continue to flourish on major social media platforms.
The Facebook group was first set up in September 2022 by a woman named Julia Czelazewicz, who is known online as Detox Mama. Czelazewicz pushes group members toward her website, where she sells Pure Body Extra as well as a number of other products.
As well as running the Facebook group, Czelazewicz has a number of other major social media accounts, including TikTok and Instagram accounts that both have over half a million followers each. Promoting “parasite detoxes” has become a major trend on TikTok in recent years. Czelazewicz is also clearly concerned that her accounts will be taken offline, as her Instagram account bio reads “censorship is real,” with a link to a backup account that already has 54,000 followers.
Despite this worry, or maybe because of it, Czelazewicz is seeking to expand her digital empire, announcing in February that she was launching an influencer program, looking for influencers with followings of at least 5,000 people who were willing to “share PBX with your established audience.”
In one TikTok video from 2022, which racked up over 1.8 million views, Czelazewicz said that she began using the product on her daughter to treat her sensory issues after hearing it recommended by Sherri Tenpenny, a major anti-vax figure who claims that vaccines cause autism.
“I am horrified to see Facebook yet again platforming charlatans that are exploiting parents of autistic children with unregulated and dangerous pseudoscience,” says Fiona O’Leary, an Ireland-based activist who has autistic children and has tracked similar groups for years. “When I report these dangerous groups to Facebook, they do nothing, even though they are clearly violating Facebook guidelines. It is child abuse, and it’s being advertised courtesy of Facebook.”
Meta, which owns Facebook and Instagram, told WIRED that it would not be removing the group. “We want our platforms to be a place where people can discuss the issues that matter to them, including health and the use of supplements,” a spokesperson said. “We have clear policies around health misinformation, and will take action against any pages and groups we find to violate our policies."
TikTok told WIRED that it was reviewing Czelazewicz’s account.
For decades the bogus claim that childhood vaccines were linked to autism was promoted widely within the so-called alternative health community. It was given a major boost in 2005 when Robert F. Kennedy Jr, who will be a member of Donald Trump’s transition team if he is elected next month, published an error-ridden article in two mainstream publications. The claims gained even more traction during the Covid lockdowns when conspiracies around vaccines surged once again.
Czelazewicz told WIRED that she has “never made a claim that this product cures autism” and that she has “no control how others choose to express their experience with PBX.” However, when asked if she would state clearly that Pure Body Extra does not have any impact on the symptoms of autism, Czelazewicz did not respond.
She also failed to respond to questions about the negative side effects being reported in the group by parents of children being treated with Pure Body Extra, and did not provide any evidence when asked if the product was suitable for children.
One of the most troubling aspects of the group is the way it seeks to prey on vulnerable parents of autistic children who appear at a loss as to how to treat their children’s behavioral problems.
“I am certain a detox will help my son,” Kala, the mother of a 2-year-old boy diagnosed with autism, wrote in the group last October. “Does anyone have kiddos that were similar? What exactly did you do to help them and did you see improvement? I love this child with absolutely every fiber of my being and it kills me to see him struggling with all of this, especially with not knowing how to help him. Any advice is welcomed and appreciated.”
Several members responding to Kala’s post claimed their autistic child had been treated with the detox product, pushing conspiracy theories about mainstream medicine and Big Pharma and claiming that the detox works best if you begin it on a full moon.
To be clear, there is absolutely no evidence that autism can be treated in any way by a product like this.
“[Peddlers of medical misinformation] use these allegations because they have a phobia of autism, not that they have any sincere intention to properly help people with autism, which involves a multidisciplinary team that helps train kids to have optimum executive function despite their difficulties,” says Frank Han, a pediatric subspecialist. “Autism is a brain change with how the brain cells develop, not a problem caused by toxins.”
Zeolites are a natural material formed when volcanic material reacts with salt water. They have been used for cleansing purposes for years in industrial settings, such as waste water treatment and cleaning up nuclear waste, as well as the removal of ammonia from animal waste, improving mineral uptake and treating anemia in livestock, and in cat litter.
But promoting zeolite as a detox treatment for children “oversimplifies the toxicity and oversimplifies the benefit of this product,” says Han. “While there are times when children should receive heavy metal detoxification—like proven lead poisoning—it should not be done as a general blanket statement because of the potential to remove normal metal ions from the diet.”
What parents are interpreting as flukes or other parasites being shed in children’s stools might actually be signs of intestinal damage, Han adds. “It is very, very rare for most communities in the US to be truly exposed to parasites, and parasites aren’t cured by zeolite, they are removed from the body by medications designed against parasites. This is a classic example of overselling a kernel of truth.”
Czelazewicz is just one of many affiliates who sell Pure Body Extra online, including Larry Cook, one of the best known US anti-vax influencers. Cook and his Stop Mandatory Vaccination group was kicked off Facebook in 2020, but only after it had amassed a following of around 200,000. Today, Cook sells Pure Body Extra as a cure for autism via his Detox for Autism website.
Pure Body Extra is manufactured by a company called Touchstone Essentials, which was founded in 2012 by Eddie Stone and is based in Raleigh, North Carolina.
The company sells a variety of other health and wellness products. On the product page for Pure Body Extra on the Touchstone Essentials website, the company says the product is safe “for all ages,” and in a section labeled “science,” the company states that the product’s “capacity to capture toxins, heavy metals, and environmental pollutants is evidenced by more than 300 studies documented on PubMed.”
However, when WIRED analyzed the 300 studies, it emerged that many were nonhuman trials, including numerous tests on animals. Indeed, over the course of the last 10 years, just seven medical trials on clinoptilolite, the particular type of zeolite used in PBX, had been conducted on humans, all of which were conducted on adults, and some of which didn’t concern detoxification.
“This is a broader trope in alternative health where [anti-vaxxers] rail against the medical establishment, saying they don’t have your best interests at heart and that you can’t trust ordinary doctors or ordinary medical science, but they do love to cherry-pick studies that seem to show favorable results for some cure that they offer,” says Calum Hood, head of research at the Center for Countering Digital Hate. “They’re then misapplying that science to try and sell people on the idea that a bit of zeolite is going to cure their child’s autism.”
When asked to provide proof that clinoptilolite was safe for use in children, Touchstone Essentials did not provide a response, but Sonia O’Farrell, the company’s chief marketing officer, told WIRED that the company “does not claim that Pure Body Extra (PBX) can cure or treat autism, or any medical condition for that matter. Pure Body Extra is a dietary supplement featuring natural zeolite to support the body’s detoxification systems. By definition, dietary supplements may not claim to treat, cure, diagnose, or prevent any disease.”
O’Farrell added that the company does not endorse any individuals who sell its products or how they promote them. “Upon becoming aware of an Affiliate making any medical claims, our compliance team will advise an Affiliate to remove any such materials,” O’Farrell added.
A statement written in small text at the bottom of the Touchstone Essentials website states: “These statements have not been evaluated by the Food and Drug Administration. Our products are not intended to diagnose, treat, cure, or prevent any disease.”
The FDA did not respond to a request for comment about the way Pure Body Extra is being promoted online.
Updated 10-4-2024 6:00 pm BST: Katlyn’s daughter was incorrectly identified as her son.
