TOUCHED BY LYME: Threading your way through Morgellons disease
What can cause weird things to pop out of your skin—perhaps looking like colorful threads of blue, red, white or black? They may even look like seeds or feathers. All this may be accompanied by intense itching, scabs or lesions that don’t heal.
If you go to a dermatologist, you have a high chance of being told that you’re making up your symptoms. “Delusions of Parasitosis” or DOP is the label often slapped on the unfortunate souls who find themselves in this predicament. (How do you “make up” something that looks like a feather poking out of your skin, when other people can see it, too?)
Dr. Ginger Savely may know more about the unusual condition more properly called Morgellons disease than anybody else on the planet. In 2003, she was working as a nurse practitioner in Texas, developing an expertise in treating Lyme disease. As she explains in her new book “Morgellons: The Legitimization of a Disease”:
A dozen or so of my Lyme patients had mysterious, spontaneously appearing, slow-healing lesions with unusual colored filaments embedded in and/or extruding from their skin. Other doctors had diagnosed these patients with “Delusions of Parasitosis” but I was beginning to have some success treating them with antibiotics….I knew these patients were not delusional because I had observed the filaments myself using lighted magnification. I had tried to extract the embedded filaments but since they were firmly and deeply attached my attempts to remove them caused patients deep radiating pain.
When a local TV reporter produced what turned out to be a powerful, award-winning news segment about Savely’s work with Morgellons patients, suddenly her phone began ringing off the hook with other folks in the same boat.
All of these people described the EXACT same long list of perplexing symptoms. This was before the disease had developed media notoriety so patients could not have been telling me the “right” symptoms in order to gain my attention.
Over the next decade, Savely would treat hundreds of Morgellons patients, most of whom turned out to have Lyme disease as well. She also conducted research, published articles, and stood up for this medically ignored population in media interviews and presentations at professional conferences. Her book “Morgellons” is a compendium of what’s known about the still-mysterious condition.
She includes the history of the disease, its signs and symptoms, the most common ways it’s misdiagnosed—and it’s pretty much always misdiagnosed—and which treatments she finds to be helpful. (Savely notes that Lyme disease treatment is less likely to help Morgellons symptoms than treatment for another tick-borne infection, Bartonellosis.)
She also discusses the state of research into the disease. (Hint: public funding for Morgellons research is non-existent. What research has occurred has been paid for by private donations.)
If you or a loved one has symptoms that might be Morgellons, I recommend you get your hands on a copy of this highly informative book immediately.
In order to keep the cost of the book down, it has been printed in black and white. However, if you go to Savely’s website, you can see the book’s photos of Morgellons filaments and lesions in eye-popping color. Here are a few examples:
For more photos, go to http://gingersavely.com/morgellons-book/
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.