April 11, 2005

Julie Gerberding, MD, MPH
Director
Center for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30333

Dear Dr. Gerberding:

I am a Pediatrician in private practice in Gainesville, Georgia. I am board certified by the American Board of Pediatrics. I am a founding member of The Longstreet Clinic, which is a multi-specialty group practice in my community. I have practiced here for almost 28 years.

Last May I first became aware of the condition that is being called ‘Morgellons’ by the Morgellons Research Foundation. Both my wife and I developed a highly unusual skin rash that I initially felt was due to cactus spines from our plant collection. As this rash spread and we developed other unusual symptoms, I became rather distressed. I knew of no disease process that could cause the symptoms we were experiencing.

As we did Internet research, I found several sites on which patients described their illnesses, rashes, and experiences. Because of the intense itching and ‘skin crawling’ sensation associated with this rash, many patients felt they were infested with some skin parasite. (My own symptoms initially made me suspect the very same thing!) Subsequently, many patients had been diagnosed with ‘Delusional Parasitosis’.

As I read more and more, I became increasingly upset, frustrated, and ashamed of my profession! Many patients had been diagnosed as delusional simply by history or the mistake of taking their physician a sample of the ‘bug’ they had collected from their own skin; i.e., a positive ‘matchbox’ sign. Very few had a complete medical evaluation. Almost none had skin biopsies or other diagnostic evaluations! Many had been placed on potent anti-psychotics by the dermatologist treating them. Even after a psychiatric evaluation that revealed no evidence of psychopathology and no evidence the patient was delusional, many dermatologists ignored the psychiatrists’ opinions and failed to evaluate their patients further.

Many patients had been to multiple physicians and specialists and felt they received no help. Some turned to alternative health practitioners. Others had used multiple topical insecticides to rid themselves of their ‘infestation’. Some even took such toxic chemicals internally!

After I found the Morgellons web site, I contacted Mary Leito, the Executive Director of the foundation, and eventually agreed to be on the foundation board of directors. I have also agreed to serve on the Medical Advisory Board of the Morgellons Foundation.

I know you were contacted by Ms. Leito and responded to her communication. Thus, I am aware the CDC is not doing any research on this disorder. I am well aware modern medical knowledge does not recognize this as a clinical syndrome. But I believe it is as real as other disorders that were unknown when I first entered practice (Kawasaki disease and AIDS are 2 examples which quickly come to mind!). I have no idea what is causing this condition or how to treat it! But I KNOW it must be far more widespread than I could have imagined last year. The patient histories, skin lesions, and symptoms are too similar to be coincidence! I cannot believe the concept of a ‘shared delusion’ could impact literally thousands of patients in the United States and other countries with such similar symptoms and physical ailments!

The most important reason I know this disease is real is from my own practice. For the last several months I have seen skin rashes in infants and children that looked exactly like my own and like pictures from patients that had been posted on the Internet! The last straw occurred last week during the check up visit of 3 of my patients. I have known the mother for 12 years. I have seen all 3 children regularly during this time and know the family very well. I had noticed the typical rash on all 3 children during my exams. Generally, I have not commented on this type of rash unless questioned by the parent. I have been hesitant to discuss something not recognized as a medical disorder, and have treated such rashes with standard treatments, mostly topical steroids. The mother of my patients asked me to look at her rash. She said she felt close enough to me to discuss the rash, which began to affect her in early December of 2004. She described such similar symptoms I did talk with her about Morgellons. She asked if it was contagious, as shortly after she developed this all 3 children began to develop a similar rash. Not long after, the mother’s boy friend developed the rash! The history, observations, symptoms, and rash had an eerie similarity to my own experience and those experiences I had read about on the Web.

In your previous communication to Mary Leito, you recommended patients seek local medical care. You said CDC had received no samples for analysis. But you stated CDC would be happy to evaluate samples submitted by physicians who were looking for answers to this puzzling condition.

I am anxious to have answers for myself and for my patients. Through the Morgellons Research Foundation, I know of several other physicians anxious to submit samples and get answers.

I believe this condition IS an emerging infectious illness that is already widespread. As many patients have developed serious neurological and psychiatric conditions after developing the skin lesions, I believe there is a possibility this condition could cause tremendous morbidity AND mortality in the next few years.

I am writing to appeal to you for assistance in getting answers to this puzzling condition. I am a clinician and not a research scientist. I do not know what type specimens or what type tests would be likely to yield answers. There are scientists who are interested and have ideas. I could certainly obtain their suggestions if you wish.

I also am asking for guidance about proper shipping of any biologic specimens obtained for analysis. I have been to the CDC site about specimen submission and was a bit over-whelmed. I do not wish to violate any Federal regulations nor do I wish to expose the public or postal workers to samples that potentially could be infectious.

If the CDC is willing to accept and analyze samples, I request your input and specific directions about sample collection, storage media, and shipping. (I really would like a ‘Cliff Notes’ or even simpler version of proper and legal shipping methods as the regulations posted on the CDC web site are not very user friendly!)

I appreciate your attention to this issue. My own experience has been life altering and is becoming increasingly frightening! The concept of an unrecognized, already widespread infectious illness that is not even acknowledged by the established medical community is distressing beyond anything I have ever felt. The fact that many patients have been labeled delusional and feel abandoned by the medical community saddens me greatly. It is distressing that many treatments for this ailment are being discussed on the Internet and none are based on good science, but only on anecdotal reports. No matter the cause or treatment of this odd condition, I feel it must be investigated by appropriate scientific research!

Sincerely,

Gregory V. Smith, MD, FAAP