Friday, May 27, 2011

Contested illnesses and naturopathic medicine: Morgellons disease

Naturopathic doctors are no strangers to contested illnesses. Without making any statement to the validity or non-validity of said illnesses, such illnesses include multiple chemical sensitivity, chronic Lyme disease, chronic fatigue syndrome, candidiasis, and others. Naturopathic doctor’s status as alternative healthcare providers means that patients who are frustrated with traditional medical doctors often seek them out for treatment of these illnesses. Patients sometimes seek NDs out for help with contested illnesses because the treatments they have been prescribed are ineffective, but frequently they seek out NDs because they feel disrespected by their medical doctors, and that their sufferings are not taken seriously.

One such illness is Morgellons disease, a condition which has risen from obscurity to national prominence in the past decade. The term itself was resurrected from the annals of medicine, having originally been applied to a condition observed in 16th century rural France, a condition characterized by the emergence of coarse ‘hairs’ from the skin, convulsions, and upper respiratory symptoms. The term was then used sporadically through the medical literature until the end of the 19th century, during which time it was used to describe a variety of parasitic-like infections. By the end of the 1800s, it had more or less disappeared from use. Since 2002, the term has appeared in popular culture to describe a condition characterized by non-healing skin lesions with associated fibers being found in the lesions or the skin.

What makes the disease contested is the fact that the ‘medical establishment’, if one can cast such a broad net, questions the validity of Morgellons as a true disease. Most people who have Morgellons disease are self-diagnosed, having read about Morgellons on the internet. Very often, dermatologists diagnose these patients as having delusional parasitosis, a fixed belief in having an ‘infestation’ by some bacteria, parasite, etc., despite no objective medical proof.

Recently, The Mayo Clinic published a report on 108 self-diagnosed Morgellons sufferers, which concluded that 107 of the patients had no evidence of any infestation or infection, despite their firm conviction that they did. The 108th patient indeed had an infection, but one already described by science. The study included examination of materials brought to the clinic by patients (which the patients claimed as evidence of infestation), as well as biopsies of the characteristic lesions. The CDC is due to publish a report on their investigation of Morgellons later on this year, the content of which is not yet public, but which has been in progress for the last two years.

This research is much-needed, and will hopefully further our understanding of this phenomenon. Interestingly, despite the fact that a Google search for ‘Morgellons’ produces over 250,000 results, a search for peer-reviewed literature on PubMed produces only 30 results. Of those thirty results, the content is mixed; some are letters to editors of medical journals, many others are discussions of delusional parasitosis (which only briefly mention Morgellons as a patient-reported disease), and one of which is a study of the sociology of Morgellons. Clearly, the Internet has become a major source in both the diagnosis and treatment of Morgellons, a fact noted by physicians (1, 2).

I want to underline the fact that I am not making a statement here as to whether or not Morgellons exists as a discrete disease with a specific bacterial or other etiologic cause. As I hope the prior paragraph has indicated, there is very little information on which to make that judgment. The history of medicine is full of examples of originally laughable theories being proven correct – germ theory, the basis of much of modern medicine, was ridiculed when it was first suggested. That said, the history of medicine is also full of beliefs later disproven, such as miasma theory (which germ theory replaced). Indeed, there is reason to believe that the term Morgellons disappeared from the medical literature in the late 19th century because germ theory allowed for better, more accurate descriptions of the symptoms previously ascribed to Morgellons. I’m withholding judgment until the CDC article, which will be released in a few months.

Morgellons presents a real challenge for the traditional medical model and medical system. The patients themselves seek out dermatologists, who are often unable to find positive proof of an infection or infestation (though as has been pointed out, a complete and thorough examination is necessary to rule out an identifiable illness, and there are many diseases to be ruled out). Dermatologists thus diagnose delusional parasitosis, not only because of the absence of an identifiable pathogen, but also because of the disbelieving, sometimes confrontational attitude of Morgellons sufferers, a symptom acknowledged by the Morgellons Research Foundation and attributed to the effect of the as-yet-unidentified pathogen. Dermatologists then refer patients to psychiatrists for treatment of what they have diagnosed as a mental health condition, which is in turn resisted by Morgellons sufferers, who insist that they do have an actual, physical infestation that needs treatment. Psychiatric medications have proven effective for delusional parasitosis, but no research has been done on their use for Morgellons, though a few case studies have been published on their use in Morgellons (at least one was successful).

Part of the challenge Morgellons presents to medicine is due to specialization – Morgellons patients, convinced that they have a material infestation of some sort, seek out dermatologists. The scope of dermatology, however, is limited, and as no clear diagnosis of physical pathology can be made, they refer to psychiatrists. Morgellons patient, frustrated and feeling that their symptoms are not being taken seriously, often reject a psychiatric diagnosis and withdraw from the medical establishment altogether, seeking alternative treatments, many of which are propagated via the Internet. In an effort to prevent this, and keep patients in contact with physicians, guidelines have been written for patients and physicians on Morgellons disease that emphasize compassion, empathy, and the need for open minds for both parties (1, 2, 3). One such article suggested using the term Morgellons as a rapport-enhancing term for patients, though under the pretext that these patients had delusional parasitosis.

Naturopathic doctors, and all primary care providers for that matter, are in a position that allows them to knit together all of a patient’s symptoms, and not just refer to a mental health specialist. Because of our training in multiple areas of human health, we have the opportunity to form a strong therapeutic alliance with patients suffering from Morgellons, and not having to insist on referral. This gives us the opportunity to keep these patients under medical supervision as they seek treatment, rather than having them flee the medical profession to seek out potentially unsafe treatments on the internet, a major source of information on Morgellons.

Perhaps ironically, the exact cause of Morgellons doesn’t necessarily matter to a naturopath. Whether it is due to a bacterial infection or just a delusion, the core determinants of health remain of primary importance – nutrition, sleep, hydration, exercise, healthy relationships, etc. In complicated cases that may take some time to unravel, we are taught to work first and foremost on these factors, and then seen what remains to be dealt with. If Morgellons is indeed bacterial in origin, proper lifestyle may help the body’s immune system become strong enough to combat the bacteria itself, possibly without the assistance of antibiotics of some sort. If psychological in origin, the lifestyle changes will help establish healthy neurological function.

Finally, I would like to mention that I believe that medical systems with alternate forms of diagnosis, such as acupuncture or homeopathy, have a role to play here. Clearly, Morgellons is testing the limits of our system of diagnosis – whether it is a physical illness with mental symptoms or a mental illness with physical symptoms, standard Western pathological definitions and treatments often have difficulty bridging that gap. Acupuncture and homeopathy, with their holistic systems of diagnosis that do not view the body and mind as separate, may be useful in treating these patients. As the jury is still out on the cause of Morgellons, these two systems may offer a viable alternative because of their stronger emphasis on symptom picture, rather than etiologic factor. Additionally, these practitioners may have the ability to foster a greater therapeutic alliance, because they can honestly say that they are treating the patient as a whole, and that it doesn’t absolutely matter whether or not the cause is physical or mental.

People suffering from contested illnesses have always sought out alternative providers. As naturopathic doctors, we have a unique opportunity to work with these patients because our treatments are so fundamental, and most will not change no matter the exact cause of the illnesses. At the same time, it is important that we stay abreast of research, so that our understanding is fully up to date, as it will guide our treatment in more challenging cases that do not respond to less forceful methods. And as always, it is crucially important to recognize that Morgellons sufferers are just that – suffering. Regardless of the cause, their suffering must be acknowledged and taken seriously.