Below is an adaptation of a heart wrenching Twitter thread by Mike, whose mother fell down a dark rabbit hole of conspiracy theories and fake medicine:
I took a Twitter break and wasn’t sure I’d come back, but then something happened: My mom was diagnosed with multiple sclerosis. That’s not what I came back though.
Obviously I and my family were devastated. This amazing person, who faced so much in life but still gave so much to others, was now facing a horrible new and very unpredictable struggle.
MS, as most people know, can only have its symptoms treated. There is no cure and that can understandably cause depression and anxiety. Who wants to believe they have no hope, right?
I’ll try to keep this not too long because Twitter is not a great forum for this kind of complex stuff, so don’t hate on me too much for keeping this simple and not addressing everything.
My family was, of course, as supportive as we could be of my mom, but we didn’t have MS. None of us have serious chronic illnesses, so we could empathize but not really relate, you know? My mom didn’t have someone she thought “got” it.
So, she started looking for support groups on Facebook and long story short, she did find a community but it was a community that convinced her she didn’t really have MS but something called “Chronic Lyme”.
You’ve probably heard of Lyme disease. It’s a real disease, which can be serious, but it can be treated with antibiotics. This isn’t what my mom was told she had. This is what her community convinced her she had:
And her community convinced her to stop seeing her family doctor and specialists and go see something called a “Lyme literate” doctor instead, who are mostly just con artists who want you to be sick forever so you never stop being a cash cow for them.
Okay, this might be longer than I thought it would be, but hey no one is probably reading it anyway.
This “Lyme literate” doctor told her that her community was right and she didn’t have MS and it was actually Chronic Lyme, which cheered her up because the doctor dangled a carrot of hope in front of her that MAYBE she could be “cured”.
We were all skeptical of this, but we didn’t see the harm necessarily since that hope was helping her depression and her community, at least in the beginning, gave her a renewed fight.
But then she started getting deeper and deeper into it. She was spending so much money, money she really couldn’t afford to spend, on supplements and other weird “treatments” that insurance wouldn’t cover.
It wasn’t just the money she was spending. She was going deeper and deeper into weird conspiracy stuff, like Lyme being a government bioweapon, the CDC profiting off not treating Lyme (???), etc.
It was just really bizarre, unhinged conspiracy stuff and it’s very common in these Chronic Lyme communities, as my dad, brother, and I found out when we started looking into it more closely, which we should have done in the first place, I know.
It was hard for us because we really did understand why it was so appealing to her because thinking she might have a cure, even if it’s for a fake diagnosis, was better than accepting the reality of having MS.
It’s not an uncommon thing either:
These “Lyme literate” doctors and other alternative practitioners, some of whom have NO health qualifications, prey on desperate people and brainwash them, with the help of other victims, to keep the money flowing.
We tried talking to my mom. We tried showing her scientific evidence. We showed her news like this about “Lyme literate” treatments killing and maiming patients, most of whom never had Lyme:
But she just would not, and still will not, listen. And again, I get it. I get the desire for community and support, even if it’s ultimately unhealthy. I get wanting hope. I get feeling cynical about our health system. This is my mom, though, and she’s being scammed by predators.
And I want people to know about it because it’s happening to so many moms and so many other people we care about and it’s been aided by the media that publishes credulous articles because who wants to question suffering people?
Like my bio says (yes, I know it’s lame but also true), I question the powerful no matter who they are and there are so many powerful, wealthy people behind spreading Chronic Lyme and alternative medicine scams and hoaxes.
Look at who is funding the anti-vax movement and then follow the money for who is pushing Chronic Lyme:
One of the things my mom believes now and is common in alternative medicine/Chronic Lyme circles is BIG PHARMA doesn’t want you to get a “true” diagnosis because they profit from, uh, not offering treatment? Yeah, I know, it makes no sense.
So, with Lyme, Big Pharma is evil and greedy because they want to profit bigly from a 2-week treatment of a $4 generic antibiotic, while alternative medicine is good because they tell you you’ll be sick forever and will never be able to stop treatments, which btw, aren’t free.
Alternative medicine practitioners are not doing it out of the goodness of their hearts. They are making money hand over fist on products their powerful, rich lobbyists have insured will not be regulated properly.
More about the powerful lobbying from Big Alternative Medicine:
I was hesitant to even write about this because people who have been brainwashed to believe they have Chronic Lyme engage in coordinated harassment campaigns, like against this writer of an article about Lyme:
New York Times reporter Apoorva Mandavilli:
My email and Twitter have been inundated with hateful messages since this article came out–accusing me of murder (!) and hoping my 10-year-old gets really sick just to teach me a lesson. So. Deep breaths. Today I will channel Marianne Williamson and “harness love.”
It’s #tick season, and with that come panic-mongering stories about chronic #Lyme and whatnot. Here’s my antidote to that. Be careful, but do not panic:
Horror stories about lingering Lyme disease proliferate, but the illness is easily treated.
But I felt like I needed to do this, both because it’s cathartic and because if I can’t get my mom back (and god I hope I can), maybe I can prevent someone else from losing a loved one to this. Well, thanks for listening, if anyone is.
Thank you to everyone who is sharing this. I wasn’t sure if anyone would see it or if anyone would relate. I haven’t talked publicly very much about my mom being preyed on by alt medicine scammers, but being quiet is how it spreads, right?
What really prompted me to discuss it was this NY Times article. My mom shared it on Facebook with just absolutely nasty commentary along with equally nasty comments from other members of her Chronic Lyme community and the amount of hate shocked me.
When my mom started into Chronic Lyme and alt medicine, it seemed weird but kind of harmless and something she’d eventually come to her senses about if we didn’t push too much. Instead she’s become such an isolated, unhappy person feeding off the hate from the CL community.
I’m ashamed to say I think my mom is probably one of the people sending hateful emails to Apoorva Mandavilli about her Lyme article and knowing she is likely part of a harassment mob is what spurred me to speak out because she has become someone I don’t recognize and I’m at a loss.
It’s been a strange journey. Before all this, I didn’t pay any attention to pseudoscience. I had no idea all this was going on and I had no idea how much it was like a cult, with people like my mom recruited as foot soldiers to financially and emotionally support the rich leaders.