“They Crawl Under My Skin and Come Out At Night”

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.

Comforting, eh?

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.

Be well,
David Edelberg, MD

 

 

Posted in Blog, Case Studies, Knowledge Base, Lyme Disease & Morgellons, T Tagged with: , , , ,
9 comments on ““They Crawl Under My Skin and Come Out At Night”
  1. Jamie Starratt says:

    David.. I get your emails and wanted to let you know that you are a very humble smart man.. I appreciate your insights into this matter. I do not have Morgellons at all, but I really appreciate your willingness to delve into a matter that most dismiss as delusional ….I had Lyme’s Disease 15 years ago and most people thought I was crazy too. Yes, Doxycycline is what helped me the most also. But when the Dr was reluctant to give me another prescription.. I did research on alternative treatments and found Pycnolgenol…the pine tree bark suppliment. .I took that daily for a while and it did finally relieve the symptoms…just wanted to let you know in case you find this helpful with other patients.. Thanks again for your knowledge and willingness to explore and think outside the conventional box! Best wishes.. Jamie

  2. Karen Krusich says:

    Thank you. After reading your newsletter I am nearly speechless….& greatly appreciative to you for caring enough about these type of conditions that steal our quality of life…as well as…our dignity. While pursuing effective treatment it is not uncommon to encounter dismissive attitudes & explanations such as… “middle age anxiety.” If only these doctors understood that they stimulate additional anxiety from the 8-10 minute appointment times which leave little time to express concerns, explore possibilities & ask questions. Continued anxiety from being diagnosed ‘solely’ from Lab Ranges. More anxiety produced when there is not a quick & easy answer so we are expected to accept & live with a quality of life that steals our family, friends & future worth. (It’s obvious that I’ve move on from speechlessness:)
    Thank you for your willingness to share information & insights!

  3. Cathy says:

    So sad. I know what it’s like to search for answers. Most doctors really get turned off if the problem is challenging. Makes for lonely times. I will not quit trying. Thank you for your website!

  4. Lori Miller says:

    LOVE your newsletters! A FB friend has been dealing with Morgellons. After being severely ill for 35 years, and getting the “it’s all in your head” treatment and a prescription for antidepressants I was finally diagnosed with Lyme’s Disease 6 years ago. What I relief it was to finally know what I was dealing with!

  5. DIANE FAY says:

    A friend has Lyme Disease Chronic and for 11 years the flare ups have been unbearable for her She is a Pilates instructor and was a Ballerina for most of her life and being incapacitated, she sought therapies in Germany at the St.George Klinic,for Lyme and Cancer Treatment ,their treatments have had remarkable healing results. She just came back and we are hoping for complete and total healing.

  6. Baby and Me says:

    Thank you for being so compassionate. I have been struggling with this for a long time in what has been singly unrelated symptoms and diagnosis, and it’s been full blown again for over a year. My sweet child has symptoms and they’re getting worse as well. We’ve tried everything holistic that we can afford, and doctors will not help. It’s pure agony to have it and barely be able to move and take care of a little tike. And, worse yet one that is struggling himself and all the guilt, shame, remorse, and pain that goes into watching him hurt, and not being able to fix it or comfort him like a mother should. I try to stay positive and have a joyful life not surrounded by illness. However, some days are so hopeless. This truly is hell on earth. Praying for some relief or comfort soon.

  7. Dr E says:

    Baby and Me
    Hi
    More and more research is linking this with Lyme and other tick borne illnesses. You and your child should both be tested

  8. Mrs C says:

    I think I have some illness, possibly related to Lyme or morgellons. I will never suggest it to another M,D.. I rather die than deal with the careless disregard I experienced . I’m convinced there is no point. I’m more concerned about those close to me. The possibility that they could be exposed or get ill is worse than the symptoms I have

  9. Dr E says:

    Hi Mrs C
    Since Lyme (and therefore Morgellons) is transmitted by tick bites, the likelihood of human to human transmission is very unlikely

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  1. […] 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 Read More […]

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