Today, the informed dermatologist may be anywhere from doctor number five to number ten or more in this patient’s search for relief, and the patient will, in the interim, have raised both heaven and hell in a frantic attempt to solve the problem that has literally taken over his or her life. Today, the internet further complicates an already difficult situation, as we see in the two letters in this Journal, as our patients share every facet of their condition, every theory as to cause, and every attempt at relief, however far-fetched, with their fellow sufferers.
This sharing, and a tremendous amount of suffering, have given rise to the formation of “The Morgellons Research Foundation,” an organization devoted to “researching an emerging infectious disease,” with a medical board that boasts five MDs and an RN. Interestingly, none are dermatologists. An internet search for “bugs in the skin” will bring one to the Foundation’s Web site, and as Murase et al point out, the information therein may be very misleading to someone who suffers from delusions of parasitosis. One reads of cellulose fibers, fibers with “autofluorescence,” fuzz balls, specks, granules, strongyloides stercoralis, cryptococcus neoformans, “alternative cellular energy pigments,” and various types of bacteria for which potent antibiotics are prescribed, in the ever broadening spectrum of possible “pathogens.” In no case does one read of positive confirmatory tests, though many tests are undertaken. As Murase et al note, one also reads of numerous associated medical and psychiatric disorders that are attributed to, rather than co-existent with, or causative of the distressing symptoms. Frustration is extreme and suicidality is not unknown.
Clearly, as more and more of our patients discover this site, there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects. It behooves us, therefore, as dermatologists, not only to be aware of this phenomenon, but also each to develop an effective way to work with these patients, and so enable the patients to be able to accept one of the medications that we know to be effective. This is a challenge indeed—so often the patient, feeling “brushed off” or not understood, simply does not follow through either with medication or with psychiatric referral.
If one is to succeed in helping these patients, it is important that one acknowledge to the patient that what the patient describes is exactly what that patient is experiencing. One can then empathize, as did Murase et al, with the patient’s pain and discomfort, their anger and frustration with dismissive doctors, and the devastating changes wrought by the condition in the patient’s life, and so develop a therapeutic relationship. With regard to causation, Morgellons disease may be an acceptable appellation, but it may also be that the touted “mysteries” of this disease only prove stimulus for further research by the patient. So, perhaps without going too far into the difference between a disease with a definite cause and a syndrome that may have different ones, it may be reasonable for us to refer to the symptom complex in question as “Morgellans syndrome” rather than disease
Of note: all these doctors are saying they are considering using the term “Morgellons” to refer to conditions involving DOP when talking to people who suffer from DOP and who also think they have Morgellons. They are doing this since it eases communication with the patient.
