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UNIDENTIFIED DERMATOSIS SYNDROME (UDS)

(a.k.a., Morgellons Disease)

SURVEILLANCE DATABASE

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Jane M. Perry, MPH, DirectorChemical Hazards Program

Environmental Health and Injury Prevention Branch

Georgia Division of Public Health2 Peachtree St., 13th FloorAtlanta, GA 30303-3141

Phone: 404.657.6534Fax: 404.657.6533

e-mail: jmperry@dhr.state.ga.us

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PRESENTATION FORMAT

• Definitions• Project history• Goals• Hypothesis• Survey• Results• Conclusions• Treatments• Next Steps

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CHEMICAL HAZARDS PROGRAM

The Chemical Hazards Program was established in 1994 through a cooperative agreement with the Agency for Toxic Substances and Disease Registry (ATSDR)

The mission of the Chemical Hazards Program is to protect the health and promote the quality of life of Georgians through the prevention of exposure to hazardous substances in the environment.

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“MORGELLONS DISEASE”

Individuals report disturbing symptoms of seeing and feeling crawling, stinging and biting organisms on and in their skin. These organisms are described as fiber-like or black specks, and are accompanied by skin lesions. Sufferers also report chronic joint pain, disabling fatigue, cognitive difficulties, mental confusion, memory loss, behavioral effects, and mood disorders.

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DELUSION OF PARASITOSIS

• An unshakable false belief that live organisms are present in the skin.

--Obermeyer, 1961

• Delusion of parasitosis usually involves young adults who are typically marginal in their socio-economic status where substance abuse is frequently associated, and older adults where drug abuse is usually not associated.

• They will frequently bring in bits of skin, lint, and other “specimens” to try to prove the existence of these alleged parasites. This behavior is so characteristic that it has been referred to as the “matchbox sign”.

• The delusion may be shared by a significant other.

--Koo & Lee, 2001, p, 286

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RULED OUT

• Drug use• Dementia• Professional pest control• Parasites—bed bugs, scabies, fleas, lice,

mites, etc.• History of psychosis

diagnosedundiagnosed

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HEADLINES

$32 Million Verdict in Mold CaseCourt TV Forensic Files

Morgellons Has Plenty of SkepticsGood Morning America

Disease Baffles Patients and DoctorsPopular Mechanics

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HEADLINES (cont.)

Doctors Make Progress with Mysterious Disease

Fox TV (San Francisco)

CDC Probes Bizarre Morgellons Condition

The Associated Press

Online Campaign Sparks Interest in New Disease

National Public Radio

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HEADLINES (cont.)

Itching for Answers to a Mystery Condition

TIME Magazine

Making Your Skin CrawlCBS (Atlanta)

ABC Primetime: Medical MysteriesABC News

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ABC PRIMETIME: Medical Mysteries

August 9, 2006

“Recent research by Randy S. Wymore, Ph.D., assistant professor of pharmacology and physiology, OSU, and a forensic scientist at the Tulsa Police Department has ruled out textile origin of fibers from patients by demonstrating that the fibers do not match any of the 100,000 textile and similar fibers in the FBI database.”

SIGN UP SHEET FOR A COPY

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Skin lesions on the legsSource: www.thenmo.org/images.htm

Electron microscope imageSource: www.morgellons.org

Fibers show fluourescenceSource: www.morgellons.org

Typical photo of fibersSource: www.morgellonUSAs.org

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PROJECT HISTORY

Dawson County case– Bottled water plant– Soil sample results– Saliva test results

Lamar County case– Corporate employed Roofer– Wife has it, too

Spalding County case– Whole family involved– Complaints of fungus– Family moved across the street

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PROJECT HISTORY (Cont.)

• Delusory Parasitosis article, Epi Rpt. 12/04

• NUSPA survey data

• Morgellons Research Foundation (New Morgellons Order)– Possibly millions of cases worldwide– Over 10,000 registered from all 50 states– About 70 cases registered in GA– GA representative contact interaction

• Am J Clinical Dermatol 2006

• “Unidentified Dermatosis Syndrome”

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GOALS

1. Discourage those with UDS from using toxic chemicals to relieve symptoms.

2. Encourage CDC and other state agencies to investigate these reports.

3. Establish a UDS communication network in Georgia.

4. Identify treatments that offer symptom relief and share this information via the network.

5. Test hypothesis.

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Abstract

Residents throughout Georgia have reported fiber-like and/or black specks crawling on/in

their skin, and a related set of symptoms including visible sores and disabling fatigue.

In response, CHP developed the Unidentified Dermatosis Syndrome (UDS) Surveillance

Database. It is intended to build and maintain self-reported symptom surveillance capacity.

In addition, data will be analyzed to determine if smptoms may be caused by

exposure to trichothecene (T-2 toxins) in soil.

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HYPOTHESIS

CHP will examine whether:

1. parasites or other organisms may be causing the symptoms;

2. individuals may share hypersensitivity to mycotoxins (i.e., T-2 toxins) produced by certain fungi/molds present in soil causing specific neurotoxic effects.

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T-2 TOXIN

Trichothecene (T-2) mycotoxin• Produced by certain fungi and molds• One of the most potent of all naturally occurring toxins• Classified, and has been used as a biological weaponSource Fungi/Mold• Fusarium, Aspergillus, Penicillium, and Stachybotrus• Present in soils throughout Georgia• dependent on substrates, pH, nutrient levels, moisture,

and temperatureSymptoms from Exposure

Skin irritation, severe itching, sores and shedding of the skin, sense distortion, lack of muscle coordination, teratogenic immunosuppressive effects, nose and throat pain, neurological and psychiatric effects…

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SYMPTOM SURVEY

April 1– October 30, 2006– Administered by phone– Pilot survey (10)– Survey (25)– 54 questions– Recommendations– Referrals– Request for follow up contact

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CASE DEFINITION

• String-like “parasites” or black specs in the skin, urine, or on the body*

• Crawling sensations in the skin or body*• Sores/itching• Fatigue• Confusion• Memory loss• Hair Loss• Dizziness* If not checked, symptoms do not meet our criteria.

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CASE RECRUITMENT

Memo– District/county EH program managers– County PH clinics– PH nursing managers– Epi On-call– CDC, other state Health Departments– Morgellons Research Foundation– Georgia Veterinary Medical Association– Activist websites– Others

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SURVEY QUESTIONS

Demographics Home environment

– Address for GIS mapping– Length of residency– Mold and fungus inside, outside– Flora, soil conditions

Outdoor activities– Gardening– Change in activities

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SURVEY QUESTIONS (cont.)

Symptoms– When, where began– Onset event– Description– Others in household, pets– Seasonal, other changes– Exacerbation triggers

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SURVEY QUESTIONS (cont.)

Medical history– Allergies– Lyme disease, ticks– Tests, results– Medications

Doctor visits– Number of visits– Medical specialties

Treatments/symptom relief

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COMMUNICATION NETWORK

Recommendations (Interviewers Protocol):• DO NOT attempt to treat symptoms with pesticides, household chemicals, or other

products not intended for those uses.• DO try over the counter allergy medicines such as Claritin to relieve your symptoms.

Use only as directed.• DO contact your doctor or veterinarian for prescription strength allergy medicines for

yourself, your loved ones, and your pets.• DO network with other individuals and organizations where members have similar

symptoms.

There are websites where you can contact others who suffer symptoms similar to yours. By listing these websites below, the GDPH is not endorsing any specific organization

or diagnosis or philosophy. For more information about symptoms, visit:

www.morgellons.orgwww.skinparasites.com

www.dpref.comwww.unknownskindisease.com

www.morgellons-research.org/morgellonswww.cherokeechas.com

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DRAFT RESULTS

Significant majoritymiddle agewhite, non-Hispanic men and womenliving in north half of GAsymptoms < 3 years (but as far back as 20 years)do not report mold in the homediscontinued outdoor activityvisit doctor(s) and/or specialist(s)

Dermatology, Infectious Disease, GI, Internal Medicine, Neurology, Urology,

Ophthalmology, Allergy, Rheumatologyself medicate

bleach, ammonia, inspect spray, dog flea dip, gasoline, kerosene, WD40, Windex, Lysol

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DRAFT RESULTS (cont.)

Insignificant majority or about equal

females / males

have / don’t have outdoor hobbies

precipitating event

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DRAFT RESULTS (cont.)

Population

The 10 county Atlanta metropolitan area has 53% of the population of Georgia

North, central, and south Georgia account for the remaining 48%.

North Georgia and the Atlanta area together account for 66% of Georgia’s population

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DRAFT RESULTS (cont.)

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23%

12%

9%

20%

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CONCLUSIONS

1. Most of the case reports came from north Georgia and indicate contact with upturned soils.

2. There are associations supporting the hypothesis, but these associations are weak and not significant.

3. While significant trends cannot be defined from this descriptive survey, this survey documents the experiences of those who report these symptoms--including potentially hazardous methods used to alleviate symptoms.

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EFFECTIVE TREATMENTS

• Add vinegar to shampoo• Complete body shave• Avoid antibacterial soaps• Dry body with paper towels• Encase bedding in vinyl covers• Wash all fabrics with bleach or, for colors, soak

in vinegar.• If no children in household, set hot water heater

to 155 degrees• Replace all carpets with linoleum or tile or

vacuum daily• Keep pets outdoors

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NEXT STEPS

• Continue analyses• Publish paper• Sampling

– Environmental– Biological– Pets

• CDC investigation