If there’s one thing I’ve learned over the last couple of decades, it’s that there is one characteristic of a quack treatment that is almost immutable, that always, always comes to apply to it—and usually rather quickly after it is introduced as a “miracle cure” for something. Basically, sooner or later, that quack treatment will be—shall we say?—repurposed for other conditions, usually many other conditions (e.g., cancer). A corollary to this principle is that, sooner or later, the quack treatment will likely be applied to autism, especially if it’s ever been claimed as a “treatment” for “vaccine injury.” A further corollary (a sub-corollary, if you will) is that, if this treatment, whatever it is, causes significant side effects in the autistic children being subjected to it, instead of stopping the treatment the parents will “persevere” and continue to abuse their child with it. I was reminded of this and thought it worth discussing when I came across a story on VICE by David Gilbert, Inside the Private Group Where Parents Give Ivermectin to Kids With Autism. It gave me serious flashbacks to Miracle Mineral Solution (a.k.a. MMS), and it was that similarity that I wanted to explore.
First of all, times change, but the basics do not. For example, the private group promoting ivermectin is on Telegram, which is where all the COVID-19 quacks, cranks, and antivaxxers go now. Back in the day (namely, less than a year before the pandemic arrived), these sorts of groups dedicated to subjecting autistic children to quackery, all in the name of “recovering” them, were largely on Facebook. The reason is simple. Facebook, as poor a job as it has done in general in removing harmful content, is actually trying to remove harmful content, something that it has sporadic success with. Telegram, however, has close to zero guardrails; basically anyone can create groups about anything they want. Starting out as a messaging service dedicated to privacy and featuring end-to-end encryption, Telegram has evolved into a social media service as well, given the huge number of Telegram channels. It’s not that Telegram has no content moderation, but its content moderation is so lax as to be, in practice, homeopathic, except that as its content moderation is diluted to zero it most definitely does not become more powerful. As a result, it’s not difficult to find many Telegram channels dedicated to COVID-19 misinformation, antivaccine conspiracy theories, and, of course, “miracle cures” like ivermectin.
Another thing that does not change is the way that these groups are often only discovered and reported in the media when a mole lurks in them. The mole could be a reporter, activist, or interested citizen, but the end result is the same. The more horrifying aspects of what parents are doing to autistic children in the name of “curing” or “recovering” them are featured.
Ivermectin to treat autism: The MMS of the COVID-19 era
Regular readers (and those who might not be regular readers but have paid attention to quackery used to “treat” autism) the VICE story about parents treating their autistic children with ivermectin will immediately bring to mind pre-pandemic stories about “autism biomed” quackery, starting with the blurb:
“I have been applying Ivermectin liquid to my granddaughter’s feet, belly button, and swabbing her ears for six weeks now. She complains of sporadic blurry vision and sometimes headaches.”
Moreover, the grift is the grift, as I like to say, and the purpose of these groups is not truly to provide help and advice, regardless of how misguided that help and advice might be, but to promote the quack treatment under discussion:
In a private group on Telegram, parents whose children are living with a range of disabilities including autism, Asperger’s Syndrome, and Down Syndrome cheer each other on and provide support when discussing daily struggles.
But the channel’s main function isn’t actually support: It’s to promote the use of veterinary ivermectin as a treatment—and in some cases a cure—for these disabilities.
As I’ve written many times before, despite its ability to inhibit the replication of SARS-CoV-2, the coronavirus that causes COVID-19, in cell culture, well-designed randomized clinical trials have failed to find any efficacy for the drug. There’s a reason why I’ve referred to ivermectin as the the acupuncture of COVID-19 treatments because of its extreme implausibility based on basic science alone. The reason for that implausibility is that the concentration required to inhibit viral growth in vitro is 50- to 100-fold higher than what can be safely achieved in humans, meaning that, from strictly a pharmacokinetics and pharmacodynamics standpoint, ivermectin was always a highly implausible treatment for COVID-19. Let’s just say that the RCT results showing that it does not work were not a surprise to anyone who had actually read the original paper about its antiviral activity in cell culture.
Of course, what was being promoted on this group was not the human formulation of ivermectin, but the veterinary formulation, which is much more concentrated and a much higher dose:
The Telegram channel was established in July 2022 as an offshoot of the much larger pro-ivermectin group “Dirt Road Discussions,” which was set up in October 2021 by Danny Lemoi, who took veterinary ivermectin for almost a decade to, he said, treat Lyme disease. When ivermectin became hugely popular among anti-vaxxers as a treatment for COVID-19, Lemoi leveraged his experience with the drug.
More on Danny Lemoi later, as I’m sure that a number of our readers know that he died recently and that his death sounds as though it might have been due to ivermectin toxicity.
First, however, a bit of comparison. Equine ivermectin comes packaged in syringes with “1.87% ivermectin paste. 6.08 g syringe treats up to 1,250 lbs. Safe for horses of all ages, pregnant mares, breeding stallions.” Another formulation comes as a 1% solution to be given 1 ml/110 lbs of weight. Basically, in horses the dose of ivermectin can be up to 1.200 mg, while the human dose recommended is only around 3 mg. When ivermectin promoters state that ivermectin is “very safe” in humans, they are correct, but only at the dose recommended for humans. As with many drugs, toxicity increases with increasing dose, and when you take far more than the recommended dose your risk of serious side effects increases.
Not that any of this stopped the parents using ivermectin from giving them the horse paste:
The Learning to Fly channel, however, takes usage for children even further.
“It is for mom and dads with kids on the spectrum,” the founder of the channel wrote in a message describing the group last year. “My daughter is 30 yrs old with Asperger’s syndrome and my son is 28 yrs old with autism. We are all 3 on ivermectin and started mid February.”
Moreover, as is often the case with quackery, if your child suffers deterioration after starting the treatment, it is an indication that the treatment is working:
The channel also provides advice on how to explain the ivermectin usage to children:
“Best way to explain it is [the kids] have a cluster of parasites that are in a part of the brain that causes outbursts. When the parasites in that part of the brain get attacked [by ivermectin] the parasites panic and release their toxins as well as get active. Their death dance,” the channel guidelines state. “This will affect the kiddos and their behaviors.”
And when children experience side effects, the channel admins claim that it’s all because the ivermectin is driving out parasites. They call this “herxing,” which is a real term used to describe an adverse response that occurs in people who take antibiotics as a treatment for Lyme disease and a number of other illnesses.
“Herxing can be a big issue with our kids,” the channel admins wrote in a pinned message. “They have so much overloading them already, herxing adds more. Remember things will get worse before they get better. They will have days [when] it looks like their behaviors are getting worse but it is only temporary. This is the herxing.”
The term “herxing,” it should be noted, comes from Lyme disease quackery, because of course it does. Lyme disease is caused by a spirochete, a class of bacteria, and “herxing is short for the Jarisch-Herxheimer reaction, which has been observed in people when they start antibiotics to treat diseases caused by spirochetes, having first been observed in patients with syphilis well over a century ago:
Jarisch Herxheimer reaction (JHR) was first described in the literature by Adolf Jarisch (Austrian dermatologist) in the late 1800s when he noticed an exacerbation of skin lesions in a syphilis patient after starting treatment with a mercurial compound. In the early 1900s, a similar phenomenon was reported by Karl Herxheimer (German dermatologist).
JHR is a transient clinical phenomenon that occurs in patients infected by spirochetes who undergo antibiotic treatment. More specifically, the reaction occurs within 24 hours of antibiotic therapy for spirochetal infections, including syphilis, leptospirosis, Lyme disease, and relapsing fever. It usually manifests as fever, chills, rigors, nausea and vomiting, headache, tachycardia, hypotension, hyperventilation, flushing, myalgia, and exacerbation of skin lesions. JHR is an acute, self-limiting condition and it is important to identify JHR and to distinguish it from allergic reactions and sepsis, which can be life-threatening.
“Herxing” has, it appears, evolved into an almost all-purpose term used by quacks to describe when someone gets worse after a treatment that supposedly targets bacteria or any “parasite” as a way of explaining that you “have to get worse before you get better.” Steve Novella once wrote about the term while correctly noting that if the person using a treatment for “chronic Lyme disease” gets worse, “then that is evidence that the treatment is working and they are experiencing the JHR (or “herxing” as the community calls it),” while if nothing happens, then “they just need more treatment,” concluding that “no matter what happens or doesn’t happen, it’s chronic Lyme.” Substitute “parasites” for chronic Lyme disease here, and you get the idea. If your child starts getting worse, then it means that the treatment is “working” and eliminating the “parasites” that are supposedly the cause of the condition or disease being treated.
Dr. Horowitz describes the difference between a “good” herx and a “bad” herx. Basically, with a good herx, the patient will have a reduction of symptoms and begin to feel better after the flare. With a bad herx, the patient will return to their prior baseline after the flare with no reduction in symptoms overall.
Unsurprisingly, there are treatments for “herxing” too that include “alkalinization”; “detox”; supplements, and more. It always amuses me to think of this whenever quacks accuse physicians of treating the side effects of pharmaceutical drugs with more pharmaceutical drugs. Apparently it’s good when quacks do the same thing, albeit with more woo, but bad when physicians do it?
Be that as it may, let’s see more of what parents are reporting in this group:
In the channel, parents even share stories about their children experiencing horrific side effects from the drug, including brain fog, severe headaches, nausea, muscle pain, and seizures—and are routinely dismissed by those running the channel, who claim it’s a normal part of the ‘healing’ process.
Actually, those of us who have followed such quackery know that “dismissed” is probably not quite the right word. Rather, they are “reassured” that such symptoms are to be expected and then encouraged to continue, for example:
A review of the chat’s eight-month history reveals parents complaining that their children suffer from a wide variety of side effects after taking the ivermectin paste, including: vomiting, change in complexion, seizures, lethargy, hyperactivity, agitation, and headaches.
“Major brain fog today after splitting headache yesterday,” one user wrote last month. Another wrote: “I have been applying Ivermectin liquid to my granddaughter’s feet, belly button, and swabbing her ears for six weeks now. She complains of sporadic blurry vision and sometimes headaches.”
“Bleeding or mucous or vomiting or diarrhea or acne or pealing or aches/pains or hot flashes & sweating are all good signs of clearing out your body,” another member wrote. “This is healing, keep going.”
Lest you judge these parents, you should recall how easy it is to fall into an echo chamber and, once in that echo chamber, how hard it is to listen to external voices. It’s even worse, given that the entire ethos of such communities tends to be along the lines of never, ever “giving up,” with abandoning treatment being viewed as surrender and the overall culture being geared towards trying increasingly radical quackery if the less radical quackery doesn’t work. Recall the story of Jim Laidler, who with his wife was drawn deeper and deeper into “autism biomed” quackery due to the much more primitive online venues that in the late 1990s and early 2000s, such as Internet forums and Usenet; that is, until a “Eureka!” moment rubbed Laidler’s face in the fact that all the quackery was not working to “recover” his autistic child, leading him to become an activist against autism and antivax quackery. He and his wife were both doctors, and they got sucked in by communities that weren’t nearly as large and were before the power of algorithmic social media, like FB, served to radicalize.
Let’s take a trip down memory lane to discuss MMS.
Autism “biomed” and MMS
I recall a 2015 article on the antivaccine website that has long promoted autism quackery, The Thinking Moms’ Revolution, entitled Why I Try “So Many” Protocols in Treating My Son with Autism that I encountered long ago:
I refuse to look back in a decade and say “I really wish I had tried that when I first heard about it” or “I really wish I had pushed through that wall of herxing and gotten to the other side.” That is why we have tried so many protocols (and we’ve given them all true trial unless they caused our son to regress) and why I continue to go to conferences to hear new ideas and try new things. This is why I read medical literature over my lunch hour and why I bring new treatment ideas to my naturopath.
This is the entire philosophy and culture behind such groups, be they closed Facebook groups or, more recently, Telegram channel: Never question. Always keep searching. And, above all, never accept your autistic child for who he is. Also, remember that the autistic child is not your “real” child. Something stole your real child from you. Whether it was vaccines, parasites, “toxins,” something else, or—usually—a combination of at least a couple of these things, it was something external that robbed you of your “true” child. Don’t get me wrong, either. This is an entirely understandable human reaction to having your child change or be different from what you had expected or hoped for. It’s basically the changeling myth. (Echoes of this myth are undeniable in “gender critical” reactions to gender-affirming care for trans adolescents.)
I also note that “parasites” have long been an alternative medicine catch-all cause for almost everything, including cancer. Those who’ve been paying attention a really long time might recall Hulda Clark’s “Zapper,” an electrical device that supposedly killed a parasite (a liver fluke) that she had deemed the “cause of all cancers.” Ultimately, she claimed that it could also zap all viruses and therefore cure AIDS and then, eventually, the cure for all diseases, regardless of whether they were caused by “parasites,” infectious agents, or not. Quacks are nothing if not frequently grandiose.
Now let’s go a bit further back in time, to ten years ago, when I first encountered what I consider to be the most relevant parallel to this ivermectin group, the promotion of MMS as a cure-all, in particular for autism.
MMS: How “never give up” leads to horrifying anecdotes
Back in 2013, I encountered the blog of the mother of a boy named Jojo. His mother had been using a variety of “autism biomed” protocols for eight years before I encountered her blog, but had recently discovered MMS. First, a word about MMS. When you break down the chemistry, it is chlorine chlorite, which is a form of bleach. MMS promoters will do their damnedest to deny that MMS is, in fact, a bleaching chemical by pointing to how it is used, for example, as a water purification agent, but it is a form of bleach. Basically, MMS is a 28% solution of sodium chlorite, which when diluted in water—or, better yet, in a weak acid like lemon juice or vinegar—produces chlorine dioxide, the relevant bleaching agent. MMS, or so it is claimed, will kill the intestinal parasites that quacks blame for autism (and a variety of other conditions and diseases). They’ll even claim that you can see the parasites coming out in the stool! MMS for autism was, as far as I can ascertain, first popularized by a woman named Kerri Rivera, who was a regular fixture a decade ago as a speaker at Autism One, the premiere yearly autism and antivax quackery pseudo-medical conference, and recommended giving children MMS both orally and by enema. (Yes, by enema.)
Interestingly, MMS got its start as a miracle cure, thanks to a man named Jim Humble, who promoted it as part of his made-up religion, the Genesis II Church, using it as a profit center to support his “ministry.” The religious fervor behind MMS was unmistakable in the closed Facebook groups dedicated to it, and I sense a similar fervor, albeit not explicitly religous, in this Telegram group dedicated to ivermectin to treat autism.
But back to Jojo’s mother, who began to follow Kerri Rivera’s MMS protocol:
Jojo is given 1 oz of the mixture hourly, so effectively he is getting 1/8th of a drop each time. His first dose was given after school at 1 pm. He is now given 8 doses only although my reading tells me that it is a minimum. I suppose I could increase up to 9-12 doses a day but I’m kinda leery of the possible increase in die-off effects too.
Even as early as day 1, she noted Jojo running a low grade fever and coughing, which, of course, could simply have been a coincidence. Similarly, she also noted JoJo to have increased hyperactivity, which could very easily have been due to confirmation bias. By day 2, Jojo continued to have fever, and his cough got worse. Somehow, his mother came to believe that “coughing after taking MMS could be due to parasites in the lung dying,” as incredible as it might be that anyone would believe something like that. Later entries describe Jojo developing constipation, and, when that resolved, his mother thinking that parasites were coming out in his stool. It is a theme that continues through the rest of the blog, as Jojo develops diarrhea, languidness, and flareups of his chronic eczema (blamed on parasites, of course).
After a week, this mother escalated to MMS enemas, leading to a series of posts with some rather gross pictures. Now take a look at one such link and the picture contained therein. What’s shown are basically stringy bits of something that looks a little bit like a worm. Jojo’s mom asked her fellow denizens of the MMS Facebook group, all of whom were “pretty sure” it was a worm. It was not. Any surgeon or doctor who deals with GI problems will recognize it as a bit of mucus, possibly with a bit of colon mucosa (the lining of the colon). We see this sort of thing all the time, and it was definitely not a worm. Unfortunately, five years later (and the last time I wrote about this issue specifically) parents were still subjecting autistic children to MMS enemas to “cure” their autism, based on the claims that autism is caused by pathogens that include parasites, candida, bacteria, and viruses; “heavy metals”; and food allergies. The claim? According to Rivera, “MMS kills pathogens and neutralizes heavy metals, as well as reduces inflammation.” It took until 2019 before a “mole” exposed the MMS private FB groups in the same way David Gilbert exposed the ivermectin Telegram channel last week.
Ivermectin: MMS redux?
I don’t know if this is truly an immutable law, but it seems that way to me: Among quacks, the use of given quackery for any given condition will ultimately be expanded to be used for more conditions:
Members of the Learning to Fly channel believe that almost everything can be cured by taking ivermectin.
“Some say Down’s syndrome and such can’t be healed, I don’t believe it,” the channel founder wrote in a post earlier this year. Her daughter is also an active member of the group, and when another member asked about the efficacy of ivermectin, the daughter wrote that “everything from inherited multiple generation blood sugar disorders or autoimmune conditions to Cohen and Autism have been cured or made notable progress so far.”
Other parents have asked about a variety of diseases. “My youngest is 5 and was diagnosed with alopecia in January. It started right around Christmas time. Does anyone have any knowledge of ivermectin being beneficial for that?,” a user wrote last week.
In response, the channel founder wrote: “I haven’t heard anyone in here with it but I did find it on the list of things cured.”
See what I mean? This is very much like the way denizens of the private FB groups promoting MMS used to—shall we say?—expand the indications for MMS. Any condition that anyone asked about would be treatable by MMS, because of course it would be! A combinatino of the culture of the discussion group and the people actively promoting MMS, either for religion or profit (or both) made such an outcome inevitable.
Also very similar is the way that side effects are portrayed as evidence that it (be it ivermectin, MMS, or whatever quackery) is working, with doubters being urged to “press on through“:
“My daughter started having blurry vision on the ivermectin,” a member of the larger Dirt Road Discussions channel wrote. “She started with severe headaches alternating with stomach pain. Now her vision is very blurry. Any advice? She’s in the first grade. I don’t want her to miss out on all the learning that is so crucial at this age.”
In response, another parent wrote: “Press on through…It’s working.”
In the end, sometimes even the believers are the victims. Remember Danny Lemoi, who had been promoting ivermectin for COVID-19, cancer (for which he had also started recommending some seriously old school quackery like Laetrile), and autism? He died unexpectedly—or, dare I say?—died suddenly (sorry, couldn’t resist):
Just before 7 am on March 3, Danny Lemoi posted an update in his hugely popular pro-ivermectin Telegram group, Dirt Road Discussions: “HAPPY FRIDAY ALL YOU POISONOUS HORSE PASTE EATING SURVIVORS !!!”
Hours later, Lemoi was dead.
For the last decade, Lemoi had taken a daily dose of veterinary ivermectin, a dewormer designed to be used on large animals like horses and cows. In 2021, as ivermectin became a popular alternative COVID-19 treatment among anti-vaxxers, he launched what became one of the largest Telegram channels dedicated to promoting the use of it, including instructions on how to administer ivermectin to children.
While it is impossible to be sure of his cause of death, given the dearth of information surrounding it, it’s difficult not to wonder if the massive doses of ivermectin that he’d been taking for many months before had anything to do with it:
And according to the Missouri Poison Center, ingesting large doses of ivermectin formulated for animals has a long list of side effects, including seizures, coma, lung issues, and heart problems. Veterinary ivermectin is not a cure or effective treatment for COVID, the FDA has repeatedly warned, and is highly concentrated because it is designed for large animals like horses and cows. “Such high doses can be highly toxic in humans,” the FDA cautions.
Again, the human dose of ivermectin is indeed very safe—for humans. The horse dose? Not so much. Again, the dose makes the poison. Also, it appears that Lemoi had suffered from a bout of something close to congestive heart failure, attributed to Lyme disease, which administrators of the channel noted, “Danny was fully convinced that his heart had regenerated after his incident with Lyme disease that almost ended in congestive heart failure.” They also claimed that “a family history of heart disease and chronic stress” were why his heart had ultimately become engorged and that all “of his other organs were unremarkable, with his death being “a death by unfortunate natural causes.” None of this is possible to verify, because neither the administrators of the ivermectin Telegram group nor the family would respond to the reporter’s request for further comment.
Meanwhile, back in the group:
But a review of Lemoi’s Telegram channels shows that many of his followers who are taking his dosage recommendations, or “protocols,” for veterinary ivermectin are experiencing numerous known side effects of taking the drug.
“I’m 4 months now and all hell’s breaking loose, all pain has hit my waist down with sciatic, shin splints, restless leg syndrome, tight sore calves & it feels like some pain in the bones,” a member wrote on Friday.
Lemoi explained away the negative side effects of taking veterinary ivermectin by describing them as “herxing,” a real term to describe an adverse response that occurs in people who take antibiotics as a treatment for Lyme disease.
“I am very new to this… I’ve been on Bimectin paste for 20 days,” one new member wrote on Friday morning, explaining that he too was suffering from Lyme disease. “I have severe chest pain. Costochondritis symptoms. Air hunger, internal tremors, brain fog, headaches on the back of my head, anxiety, depression, doom and gloominess.”
But don’t even just suggest that it might have been the ivermectin that killed Lemoi:
When some members of the group blamed Lemoi’s death on ivermectin, they were criticized in the Telegram channel; their fellow group members claimed they were spreading misinformation.
“No one can convince me that he died because of ivermectin,” one member wrote this week. “He ultimately died because of our failed western medicine which only cares about profits and not the cure.”
Same as it ever was. The drugs and quack treatments might change, as might the specific online forums where such quack treatments are promoted, but the psychology remains the same. Until we have better strategies and tools to address that, simply debunking treatments like MMS, the Zapper, and ivermectin for autism, although helpful to an extent, will not be enough.