Morgellons: My favorite non-delusional ‘delusional’ disease

This week’s Radiolab podcast – Alpha-Gal – is one of the best ever. You can get the gist (although without the divine storytelling of meat-worshipper Amy Pearl) from this New Yorker article by Peter Andrey Smith.

So it turns out that over the last couple of decades more and more people have been going to their doctor saying, “Hey, you know what’s weird? I’ve suddenly become allergic to red meat. I break out in hives.” To which doctors say, “What a load of bullshit. A) there’s no such thing as an allergy to red meat. And B) even if there was, humans don’t just suddenly develop an allergy after eating something for years. This is psychosomatic. It’s all in your head.”

perfectly cooked steak, by Prayitno on flickr cc.jpg
Perfectly cooked steak, by Prayitno on Flickr, used under a Creative Commons Licence

Which for people like Amy Pearl, who had eaten and loved red meat for years before it ended up putting her in the emergency room in anaphylactic shock, was contrary to all empirical evidence.

Then in 2004 a new cancer drug, cetuximab, was released for use. While it fought the growth of colorectal cancer cells, in some patients cetuximab also caused allergic reactions: itching, swelling, a rash, and a dangerous drop in blood pressure. Just like the reactions of people who were finding they suddenly couldn’t eat red meat. And it turns out  these cancer patients had pre-existing antibodies for an enzyme called alpha-galatosidase – otherwise known as alpha-gal. Alpha-gal is found in the tissues of non-primate mammals. Cetuximab had been developed using genetically altered mice. Cetuximab contained alpha-gal.

So, question: why did some people have antibodies for alpha-gal? Answer: probably because they were bitten by a tick.

lone_star_tick_amblyomma_americanum_%e2%99%80_14422859582
Lone-Star Tick. Photo by Benjamin Smith, used under a Creative COmmons Licence.

There’s no indisputable proof for this – yet – but the distribution of alpha-gal antibodies aligns neatly with the distribution of Rocky Mountain Spotted Fever: a virus carried by ticks, which, until the late 1940s, killed up 30% of victims.

And what do you know, 80% of people reporting red meat allergies also reported being bitten by a tick. In 2011, tick bites were linked with “a twenty-fold increase in alpha-gal antibodies, giving rise to their theory that the saliva of lone-star ticks sensitizes humans’ immune systems to alpha-gal, triggering the release of histamines when red meat is ingested.”

The New Yorker reports that disease ecologist Richard Ostfield says, “Given the diverse pharmacopeia found in tick saliva . . . it [is] not surprising that one compound might mimic the blood sugar found in its warm-blooded hosts—non-primates like deer, mice, and rabbits, which have alpha-gal in their blood. When tick saliva perforates human skin, some people’s immune systems treat the sugar as a foreign antigen, producing an extraordinary reaction to red meat.”

Right: so far, so good. Although there is no definitive proof, it’s looking likely that something in a tick bite primes humans to reject alpha-gal, which is bad news for both your cancer medication and your spare ribs with bourbon glaze. Although, you know, if those were human spare ribs, they’d be able to eat them no problem. Just sayin’.

karma-spare-ribs-pic-by-kurman-communications-flickr-cc-lic
Definitely not delicious human ribs. Photo by Kurman Communications on Flickr, used under a Creative Commons Licence.

 

While this is awful for people like me who find animals delicious, what had me really jumping up and down is the potential ramifications for investigations into Morgellons disease.

As the Wikipedia entry states, Morgellons is widely believed to be “a form of delusional parasitosis.” Believed by the medical establishment, that is. But not by the people who go to the doctor with “crawling sensations on and under the skin . . . itchy rashes, stinging sores, fiber-like filaments emerging from the sores, severe fatigue, concentrating difficulty, and memory loss.

Many of these people turn up at their doctor’s surgery with a tiny collection of fibres they have pulled from their skin – fibres that are growing out of their skin. Too bad these people didn’t know about the “match box sign.” They didn’t know during medical training young doctors are specifically warned that one day people who imagine they are infected with bugs will turn up at their surgery carrying matchboxes full of “bugs” they have picked off their skin.

The match box sign is a clear signal the patient has a psychiatric illness, not a physical one. “Oh, I know this one,” thinks the doctor. And then tells their patient it’s self-induced. It’s psychosomatic. It’s all in their head. And can therefore be treated with antipsychotic medications. Oh, by the way, statistically, as a Morgellons sufferer, you’re a middle-aged white woman, and that will mean you’re totally taken seriously by doctors at the best of times, right?

morgellons fibres.gif
Morgellons rash and fibres. Photo from the 2015 BMC Dermatology paper by Middleveen, Bandoski, Burke, Sapi, Filush, Wang, Franco, Mayne and Stricker linked to elsewhere in this post.

 

Nurse and Morgellons sufferer Cindy Casey Holman is kind of the spokesperson for Morgellons awareness. She points out although it was first described over 300 years ago, has taken decades for people presenting with Morgellons symptoms to be listened to. It took her nine years to find a dermatologist who didn’t immediately want to put her on antipsychotics.

The thing is, when medical practitioners do take people’s symptoms seriously, there’s something there. Morgellons sufferers test positive for Borrelia burgdorferi, the bacteria that causes Lyme disease. As you may know, Lyme disease really fucking sucks. Borrelia burgdorferi is introduced into the human system by . . . you know it: a tick bite.

And those fibres? When people actually tested them instead of whispering, “match box sign” under their breath and throwing a prescription for SSRIs at patients, they turn out  to be “composed of keratin and collagen, and . . .result from proliferation of keratinocytes and fibroblasts in epithelial tissue.” And these fibres can be found “underneath unbroken skin.” They’re not transfer from bedlinens, carpets, or clothing. They’re growing inside you.

Which makes it frustrating when these guys boldly state they treated four people for delusional parasitosis:

“We are presenting four new cases of delusions of parasitosis, two of which also had features of Morgellons disease. This illustrates the difficulties in therapy of these patients having almost universal refusal to accept the psychiatric component. Two of the patients responded to treatment while two did not . . . The recommended treatments of pimozide, lexapro, and risperdone are examined.”

Imagine you have one of the multitude of tick-bourne illnesses. You go to the doctor. They  give you an antipsychotic, an antidepressant, and medication used to treat schizophrenia. Utterly surprising no-one except the doctor, your condition fails to respond to this. And the doctor calls you delusional. Just like those people who developed an impossible, non-existent allergy to red meat.

You know, there’s already a freaky new disease being seriously targeted by professionals because it causes weird-ass skin growths: Bovine Digital Dermatitis. This causes “keratin filament formation in skin above the hooves in affected animals.” It is also mysterious. “The multifactorial etiology of digital dermatitis is not well understood, but spirochetes and other coinfecting microorganisms have been implicated in the pathogenesis of this veterinary illness.”

Cows, dude. We take this seriously in cows because BDD causes decreased milk production and weight loss in livestock.

bovine digital dermatitis.png
BDD in a cow’s foot.

We don’t know enough about Morgellons. And part of that is because when women go to the doctor they are frequently not taken seriously. Yes, some people do present to their doctor with delusions of parasites crawling under their skin. This is a thing that happens. But Jesus fucking Christ, you cannot do a case study of one patient – repeat, ONE – and write an article declaring you have “prove[n] the self-introduction under the epidermis of environmental filaments [and] scientifically demonstrated the self-induced nature of Morgellons disease, thereby wiping out fanciful theories about its etiopathogenesis.

So you should go listen to Alpha-Gal because Radiolab is one of the best podcasts around and this is one of their best episodes. And you should also be tick-aware as hell. Or, alternatively, become an exclusively indoor person. I vote for that last one.

 

3 thoughts on “Morgellons: My favorite non-delusional ‘delusional’ disease

  1. Great article with all the facts and some new propaganda from the astroturfers. It’s good to note that understanding the filaments originate from fibroblasts and keratinocytes removes much of the anxiety in suffering with the disease. Excellent effort here, great article!

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