The Saddest, Loneliest Patients In America

Imagine this: one night, you awaken from sleep feeling itchy all over. You scratch and scratch, eventually getting back to sleep. The next day, you feel like your skin is crawling. Your hair just doesn’t feel like your hair. A few days later, you see skin lesions on different parts of your body. You go to a dermatologist who looks at the lesions and prescribes a cortisone cream or thinks it might be scabies and prescribes an anti-scabies lotion. These don’t help.

Later, when you examine one especially itchy lesion with a magnifying glass, you see some sort of stuff coming out of your skin: red threads, yellow threads, black specks. You see and feel a sandy sensation in your bed.

Now you get worried.

You pull of a few threads and put them in a matchbox or a cellophane envelope and return to your dermatologist. He scrapes or biopsies a couple of areas and says “nothing, just normal skin” or “clothing fibers” and suggests a tranquilizer for your anxiety.

You go online and type “parasites under skin” and a bunch of repulsive skin conditions appear, but you were already checked for these. Then you retype your request as “threads coming out of skin” and start reading about Morgellons disease. When you finally reach the Wikipedia article, you know you’re in trouble.

Whoever wrote the wiki article (and based on the writing style, I suspect it was the people over at quackwatch.com) is pretty dim in the compassion and concern department. Basically it’s “Morgellons, eh? It’s all in your head!”

The Morgellons-Lyme-Bartonella link
Anyone who has suffered from a chronic condition with no positive test results (like fibromyalgia or chronic fatigue) has heard a doctor say “I don’t know what’s wrong with you, so you must be depressed.”

With Morgellons, you’re more likely to be called deluded. You think you see threads. Or maybe you’re planting them into your skin yourself. Red threads? Blue threads? “Let me refer you to a psychiatrist.”

Now you’re in a pickle. Someone has entered “delusional parasitosis” into your electronic medical records and the diagnosis is yours forever, like someone tattooed it across your forehead. In fact, years ago some cynical physicians coined the term “matchbox sign,” meaning when a new patient brings evidence of a parasite in a matchbox, save time and send her immediately to a psychiatrist.

If you’re curious to see a few of these thread, specks, etc., click here and scroll down, but—WARNING–some of the photos require a strong stomach. Yet even when doctors are shown photos like these, patients are simply not believed. The alleged expert on Morgellons at one of Chicago’s major teaching hospitals is neither an infectious disease specialist nor a dermatologist, but rather a psychiatrist.

However, some years ago, California nurse practitioner Ginger Savely, who had been working extensively with Lyme patients, discovered that her Morgellons patients were very frequently testing positive for Lyme. Later, Canadian veterinarian M.J. Middelveen noted a similar thread/filament-producing condition in cattle called Bovine Digital Dermatitis (BDD). Both Lyme and BDD were caused by a spirochete, a type of bacteria that’s a cousin to syphilis. Middelveen contacted physicians who had been taking their Morgellons patients seriously and inquired if they had tested blood for spirochetes.

Fast forward: when the vast majority of Morgellons patients tested positive for the familiar spirochetal infection, Lyme disease, or a second tick-borne (and flea-borne) illness, Bartonella, Middelveen published her findings in several leading dermatology journals.

And the silence was deafening.

What Savely and Middelveen had shown, later confirmed by other Lyme researchers, was that 90% of Morgellons patients tested positive for Lyme or Bartonella. These were patients who either knew they had Lyme disease but had received inadequate antibiotic treatment (less than three weeks) or, alternatively, were completely unaware they had Lyme but now tested positive for it.

In addition to their skin issues, many of the patients with persistent Lyme had been feeling unwell for years with fatigue, muscle/joint pains, brain fog, and feverishness. Like those with Morgellons, they had been repeatedly told “we can’t find anything wrong with you.”

CDC limits Lyme definition
The Centers for Disease Control (CDC) now reports there are 300,000 new cases of Lyme disease every year. Although Lyme originally came from the East Coast, it’s appearing in high numbers in Michigan, Wisconsin, and northern Illinois. The number of new Lyme cases now exceeds the number of new cases of breast cancer (246,000) annually.

Keep in mind that the annual 300,000 new Lyme cases is likely a very low number, representing only patients actually diagnosed with Lyme via a blood test. Add to this group the patients who got a “summer flu” and didn’t go to a doctor as well as those who went to a doctor but weren’t tested for Lyme, and the number is much (!) larger.

The CDC has chosen to limit the definition of Lyme to the acute form (flulike illness appearing a few days after a tick bite). It ignores chronic Lyme disease, the condition that can follow an inadequately treated acute case or an undiagnosed (and never treated) acute case that is allowed to fester for years.

The reason for the CDC’s position (shameful, to my mind) is this: blood tests for chronic Lyme are frequently negative. So if the patient has signs and symptoms of chronic Lyme but no positive test result, there is no disease. End of discussion.

But now we’re learning that the Lyme spirochete (Borrelia burgdorferi) has the unique ability to change its shape and form as part of a survival strategy that allows it to hide. This means it can elude the patient’s immune system as well as the medical testing systems we’ve developed.

Current approach
So the current thinking in American medicine is this: Morgellons is a delusion and patients who believe they have it need a psychiatrist. When presented with evidence that Morgellons is caused by chronic Lyme disease, the response is “Well, chronic Lyme is a delusion, too.”

Where you’re chronically ill and doctor after doctor writes you off as seriously deluded, you feel extremely isolated and depressed.

Earlier this year, I read an article about the annual Morgellons meeting held in Austin, Texas, every April. Both patients and physicians are invited. Unfortunately, there are more of the former than the latter. One patient said, “I’d rather have cancer than Morgellons. At least doctors pay attention to you.”

As a follow-up to this undeniably cheerless article, there actually is a treatment protocol for a Morgellons patient who tests positive for Lyme. Several of us at WholeHealth Chicago recently attended the International Lyme and Associated Diseases (ILADS) meeting in Philadelphia and learned that doctors are getting good results with a three-drug antibiotic protocol.

Not surprisingly, since the spirochete of Lyme is a cousin to the spirochete of syphilis, the program is similar to that used for tertiary (advanced) syphilis.

But what US doctors really need is a crash course in Compassion 101.

Be well,
David Edelberg, MD   

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5 comments on “The Saddest, Loneliest Patients In America
  1. Jenny Delgado says:

    This was so touching. Thank you so much for treating chronic Lyme.

  2. Donna Balfe says:

    So are the emerging “threads” real or not?

  3. Dr E says:

    The threads are a product of a chronically inflamed skin cell. They are not from the Borrelia itself nor are they a textile product.

  4. Denise Reinke says:

    Amazing article…thank you for sharing your knowledge. Hopefully your readers share this info with others and maybe help someone with this condition.

  5. Cori says:

    There are new findings that the threads are marine life based. I’m looking forward so seeing more progress in this arena. Very scary stuff.

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