Earlier this year, iconic folk singer Joni Mitchell was found unconscious in her California home and immediately hospitalized. Although she was subsequently discharged and seems to be doing well (in late June her spokesperson said she’d experienced an aneurysm), the hospitalization revealed that she’d been plagued for years with Morgellons Disease.
She describes her experience with Morgellons in a 2010 LA Times interview: “I have this weird, incurable disease that seems like it’s from outer space.. I look scary under daylight… Fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm: they cannot be forensically identified as animal, vegetable, or mineral. Morgellons is a slow, unpredictable killer — a terrorist disease: it will blow up one of your organs, leaving you in bed for a year. In America, the Morgellons is always diagnosed as ‘delusion of parasites’ and they send you to a psychiatrist.”
And from her 2014 memoir In Her Own Words: “I couldn’t leave my house for several years. Sometimes it got so I’d have to crawl across the floor. My legs would cramp up like a polio spasm.”
What Morgellons feels like
In addition to a creepy crawly sensation beneath the skin and those very peculiar fibers, Morgellons patients also have chronic fatigue, brain fog, and muscle aching, which are also common symptoms of fibromyalgia and chronic fatigue syndrome. Because various diagnostic test results are generally negative, people who struggle with fibro and CFS frequently hear “We can’t find anything wrong. Your tests are normal. It’s all in your head.”
For those with Morgellons, the situation may be even worse. They see white, blue, red, and black fibers among their itchy skin sores. But physicians, usually dermatologists, don’t see anything. Doctors often say that the fibers are strands of clothing, or normal tiny pieces of shredded skin. Some physicians totally disbelieve their Morgellons patients and accuse them of implanting fibers or deliberately scraping their skin in order to be taken seriously. They advise them to seek psychiatric help, and label them as suffering from “delusional parasitosis.”
Once the word “delusional” gets written into a patient chart, it’s there forever.
Our Morgellons patient
Some time ago, I had a patient (we’ll call her Laura) with Morgellons who traveled from another city after seeing dozens of doctors and being dismissed as a delusional neurotic. Laura actually arrived with an overloaded briefcase filled with negative test results (including multiple skin biopsies), a full-sized microscope, and several small glassine envelopes containing fibers she had picked off her skin. I was happy to look at these since I’d never actually seen a patient’s own samples. “You’re the first doctor willing to even check these out,” she said delightedly.
I wasn’t much help. What I saw under the microscope were exactly what’s described in dermatology textbooks for Morgellons: different colored fibers that she told me had pushed up through her skin. To retrieve a fiber, Laura explained, she would grab one with tweezers and tug it free. From my examination under the microscope, I was unable to tell what these fibers actually were made of, whether they were inanimate pieces of cloth or organic bits of fibrous tissue. I suggested that an analytic lab might be able to offer more than our office.
Laura told me that one doctor had prescribed the antibiotic doxycycline (Minocin) and she’d been surprised at how much better she felt. Unfortunately, she couldn’t get doctors to prescribe it for long-term use. I remember thinking at the time that long-term doxycycline was pretty safe (if taken with good probiotics), as it was given to teenagers for acne. I wondered if the antibiotics might be killing some unknown bug or whether she was experiencing a placebo effect, so convinced the antibiotics were killing whatever was crawling around that she simply felt better.
I’m pretty open to the “whatever works” philosophy of medicine and since there were no more tests to order, I wrote her prescriptions for both doxycycline and the anti-fungal diflucan, both of which are relatively safe for long-term use. I encouraged her to find a local doc who would continue these. I never heard from Laura again.
Blaming the patient for her symptoms
Based on the writing style alone, I’m pretty sure the Wiki article on Morgellons was authored by Stephen Barrett, MD, who runs quackwatch.com. The article dismisses Morgellons as another “sham” diagnosis along with candida, leaky gut, and adrenal fatigue. Both the Mayo Clinic and WebMD websites are more empathetic, and they do emphasize the cause-unknown factor and offer some suggestions for symptom relief (mainly anti-itch creams).
I was disappointed, but not particularly surprised, to see an undercurrent of medical sexism in many of the articles I’ve been reading about Morgellons. There’s frequent reference to the fact that most sufferers are middle-aged white women (MAWW). With psychiatric innuendoes lurking in the same paragraph, you finish the article with the sense that those MAWWs are always complaining about something.
Obviously any prejudice grievously interferes with rational medical thinking. Those who hint at the MAWW vulnerability to chronic symptoms forget that this group generally has better access to the health care system. Anyway, women as a rule are more in touch with their bodies than men.
Bad news, good news
Bad news first. Spurred by letter-writing campaigns, the CDC actually did spend quite a bit of time and money trying to determine if Morgellons is an infection. They concluded that the skin lesions were induced by patients themselves and that the fibers looked like skin and bits of clothing. CDC was unable to say if Morgellons was a new condition or a delusional phenomenon. They also decided to do no further research on the subject. Case closed.
Thanks a bunch, guys.
Now some good news. Several years ago, dermatology researchers noted that a very specific organism, called a spirochete, had been found in the skin lesions of several people with Morgellons. Spirochete infections occur primarily in sexually transmitted syphilis (caused by Treponema pallidum) and tick-bite Lyme disease (caused by Borrelia burgdorfi.)
Recently, using very sophisticated diagnostic research tools including electron microscopy, some (but not all!) research has linked Morgellons to Chronic Lyme (Borrelia) and a second tick-borne illness called Bartonella.
But doctors do disagree, and at this juncture, the CDC doesn’t buy the Morgellons-Lyme-Bartonella link. The situation is certainly not helped by the fact that a majority of conventionally trained physicians still don’t believe in the existence of chronic Lyme, many dismissing it, too, as an “all in your head” condition.
So here’s where things stand
If you have the horrible sensation of things crawling beneath your skin, see fibers popping from itchy skin lesions, and feel ill all the time, according to the conventional medicine viewpoint you’re neurotic and need a shrink, especially if you’re a MAWW.
A minority of physicians, including us at WHC, would counter that you’re not neurotic, your symptoms are real, and you should be tested for Lyme and other tick-borne illnesses. If your tests show even a hint of Lyme, you should be treated for it.
This, by the way, would explain why Laura, the Morgellons patient I treated years ago, reported feeling better taking doxycycline.
It’s the mainstay of Lyme treatment.
David Edelberg, MD