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Georga Public health Morgellons powerpoint presentation

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Morgellons
powerpoint presentation given the Georgia Public Health Association conference on Sept. 5, 2007. As you can see, there is still more analyses needed.

Published in: Health & Medicine, Technology
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Georga Public health Morgellons powerpoint presentation

  1. 1. UNIDENTIFIED DERMATOSIS SYNDROME (UDS) (a.k.a., Morgellons Disease) SURVEILLANCE DATABASE
  2. 2. <ul><li>Jane M. Perry, MPH , D irector Chemical Hazards Program Environmental Health and Injury Prevention Branch Georgia Division of Public Health 2 Peachtree St., 13 th Floor Atlanta, GA 30303-3141 Phone: 404.657.6534 Fax: 404.657.6533 e-mail: jmperry@dhr.state.ga.us </li></ul>
  3. 3. PRESENTATION FORMAT <ul><li>Definitions </li></ul><ul><li>Project history </li></ul><ul><li>Goals </li></ul><ul><li>Hypothesis </li></ul><ul><li>Survey </li></ul><ul><li>Results </li></ul><ul><li>Conclusions </li></ul><ul><li>Treatments </li></ul><ul><li>Next Steps </li></ul>
  4. 4. <ul><li>CHEMICAL HAZARDS PROGRAM </li></ul><ul><li>The Chemical Hazards Program was established in 1994 through a cooperative agreement with the Agency for Toxic Substances and Disease Registry (ATSDR) </li></ul><ul><li>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. </li></ul>
  5. 5. “ MORGELLONS DISEASE” <ul><li>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. </li></ul>
  6. 6. DELUSION OF PARASITOSIS <ul><li>An unshakable false belief that live organisms are present in the skin. </li></ul><ul><li>--Obermeyer, 1961 </li></ul><ul><li>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. </li></ul><ul><li>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”. </li></ul><ul><li>The delusion may be shared by a significant other. </li></ul><ul><li>--Koo & Lee, 2001, p, 286 </li></ul>
  7. 7. RULED OUT <ul><li>Drug use </li></ul><ul><li>Dementia </li></ul><ul><li>Professional pest control </li></ul><ul><li>Parasites—bed bugs, scabies, fleas, lice, mites, etc. </li></ul><ul><li>History of psychosis </li></ul><ul><li>diagnosed </li></ul><ul><li>undiagnosed </li></ul>
  8. 8. HEADLINES <ul><li>$32 Million Verdict in Mold Case </li></ul><ul><li>Court TV Forensic Files </li></ul><ul><li>Morgellons Has Plenty of Skeptics </li></ul><ul><li>Good Morning America </li></ul><ul><li>Disease Baffles Patients and Doctors </li></ul><ul><li>Popular Mechanics </li></ul>
  9. 9. HEADLINES (cont.) <ul><li>Doctors Make Progress with Mysterious Disease </li></ul><ul><li>Fox TV (San Francisco) </li></ul><ul><li>CDC Probes Bizarre Morgellons Condition </li></ul><ul><li>The Associated Press </li></ul><ul><li>Online Campaign Sparks Interest in New Disease </li></ul><ul><li>National Public Radio </li></ul>
  10. 10. HEADLINES (cont.) <ul><li>Itching for Answers to a Mystery Condition </li></ul><ul><li>TIME Magazine </li></ul><ul><li>Making Your Skin Crawl </li></ul><ul><li>CBS (Atlanta) </li></ul><ul><li>ABC Primetime: Medical Mysteries </li></ul><ul><li>ABC News </li></ul>
  11. 11. ABC PRIMETIME: Medical Mysteries August 9, 2006 <ul><li>“ 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.” </li></ul><ul><li>SIGN UP SHEET FOR A COPY </li></ul>
  12. 12. <ul><li>Skin lesions on the legs </li></ul><ul><li>Source: www.thenmo.org/images.htm </li></ul>Electron microscope image Source: www.morgellons.org Fibers show fluourescence Source: www.morgellons.org Typical photo of fibers Source: www.morgellonUSAs.org
  13. 13. PROJECT HISTORY <ul><li>Dawson County case </li></ul><ul><ul><li>Bottled water plant </li></ul></ul><ul><ul><li>Soil sample results </li></ul></ul><ul><ul><li>Saliva test results </li></ul></ul><ul><li>Lamar County case </li></ul><ul><ul><li>Corporate employed Roofer </li></ul></ul><ul><ul><li>Wife has it, too </li></ul></ul><ul><li>Spalding County case </li></ul><ul><ul><li>Whole family involved </li></ul></ul><ul><ul><li>Complaints of fungus </li></ul></ul><ul><ul><li>Family moved across the street </li></ul></ul>
  14. 14. PROJECT HISTORY (Cont.) <ul><li>Delusory Parasitosis article, Epi Rpt. 12/04 </li></ul><ul><li>NUSPA survey data </li></ul><ul><li>Morgellons Research Foundation (New Morgellons Order) </li></ul><ul><ul><li>Possibly millions of cases worldwide </li></ul></ul><ul><ul><li>Over 10,000 registered from all 50 states </li></ul></ul><ul><ul><li>About 70 cases registered in GA </li></ul></ul><ul><ul><li>GA representative contact interaction </li></ul></ul><ul><li>Am J Clinical Dermatol 2006 </li></ul><ul><li>“ Unidentified Dermatosis Syndrome ” </li></ul>
  15. 15. GOALS <ul><li>1. Discourage those with UDS from using toxic chemicals to relieve symptoms. </li></ul><ul><li>2. Encourage CDC and other state agencies to investigate these reports. </li></ul><ul><li>3. Establish a UDS communication network in Georgia. </li></ul><ul><li>4. Identify treatments that offer symptom relief and share this information via the network. </li></ul><ul><li>5. Test hypothesis. </li></ul>
  16. 16. <ul><li>Abstract </li></ul><ul><li>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. </li></ul><ul><li>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. </li></ul>
  17. 17. HYPOTHESIS <ul><li>CHP will examine whether: </li></ul><ul><li>parasites or other organisms may be causing the symptoms; </li></ul><ul><li>2. individuals may share hypersensitivity to mycotoxins (i.e., T-2 toxins) produced by certain fungi/molds present in soil causing specific neurotoxic effects. </li></ul>
  18. 18. T-2 TOXIN <ul><li>Trichothecene (T-2) mycotoxin </li></ul><ul><li>Produced by certain fungi and molds </li></ul><ul><li>One of the most potent of all naturally occurring toxins </li></ul><ul><li>Classified, and has been used as a biological weapon </li></ul><ul><li>Source Fungi/Mold </li></ul><ul><li>Fusarium , Aspergillus , Penicillium , and Stachybotrus </li></ul><ul><li>Present in soils throughout Georgia </li></ul><ul><li>dependent on substrates, pH, nutrient levels, moisture, and temperature </li></ul><ul><li>Symptoms from Exposure </li></ul><ul><li>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… </li></ul>
  19. 19. SYMPTOM SURVEY <ul><li>April 1– October 30, 2006 </li></ul><ul><ul><li>Administered by phone </li></ul></ul><ul><ul><li>Pilot survey (10) </li></ul></ul><ul><ul><li>Survey (25) </li></ul></ul><ul><ul><li>54 questions </li></ul></ul><ul><ul><li>Recommendations </li></ul></ul><ul><ul><li>Referrals </li></ul></ul><ul><ul><li>Request for follow up contact </li></ul></ul>
  20. 20. CASE DEFINITION <ul><li>String-like “parasites” or black specs in the skin, urine, or on the body* </li></ul><ul><li>Crawling sensations in the skin or body* </li></ul><ul><li>Sores/itching </li></ul><ul><li>Fatigue </li></ul><ul><li>Confusion </li></ul><ul><li>Memory loss </li></ul><ul><li>Hair Loss </li></ul><ul><li>Dizziness </li></ul><ul><li>* If not checked, symptoms do not meet our criteria. </li></ul>
  21. 21. CASE RECRUITMENT <ul><li>Memo </li></ul><ul><ul><li>District/county EH program managers </li></ul></ul><ul><ul><li>County PH clinics </li></ul></ul><ul><ul><li>PH nursing managers </li></ul></ul><ul><ul><li>Epi On-call </li></ul></ul><ul><ul><li>CDC, other state Health Departments </li></ul></ul><ul><ul><li>Morgellons Research Foundation </li></ul></ul><ul><ul><li>Georgia Veterinary Medical Association </li></ul></ul><ul><ul><li>Activist websites </li></ul></ul><ul><ul><li>Others </li></ul></ul>
  22. 22. SURVEY QUESTIONS <ul><li>Demographics </li></ul><ul><li>Home environment </li></ul><ul><ul><li>Address for GIS mapping </li></ul></ul><ul><ul><li>Length of residency </li></ul></ul><ul><ul><li>Mold and fungus inside, outside </li></ul></ul><ul><ul><li>Flora, soil conditions </li></ul></ul><ul><li>Outdoor activities </li></ul><ul><ul><li>Gardening </li></ul></ul><ul><ul><li>Change in activities </li></ul></ul>
  23. 23. SURVEY QUESTIONS (cont.) <ul><li>Symptoms </li></ul><ul><ul><li>When, where began </li></ul></ul><ul><ul><li>Onset event </li></ul></ul><ul><ul><li>Description </li></ul></ul><ul><ul><li>Others in household, pets </li></ul></ul><ul><ul><li>Seasonal, other changes </li></ul></ul><ul><ul><li>Exacerbation triggers </li></ul></ul>
  24. 24. SURVEY QUESTIONS (cont.) <ul><li>Medical history </li></ul><ul><ul><li>Allergies </li></ul></ul><ul><ul><li>Lyme disease, ticks </li></ul></ul><ul><ul><li>Tests, results </li></ul></ul><ul><ul><li>Medications </li></ul></ul><ul><li>Doctor visits </li></ul><ul><ul><li>Number of visits </li></ul></ul><ul><ul><li>Medical specialties </li></ul></ul><ul><li>Treatments/symptom relief </li></ul>
  25. 25. COMMUNICATION NETWORK <ul><li>Recommendations (Interviewers Protocol): </li></ul><ul><li>DO NOT attempt to treat symptoms with pesticides, household chemicals, or other products not intended for those uses. </li></ul><ul><li>DO try over the counter allergy medicines such as Claritin to relieve your symptoms. Use only as directed. </li></ul><ul><li>DO contact your doctor or veterinarian for prescription strength allergy medicines for yourself, your loved ones, and your pets. </li></ul><ul><li>DO network with other individuals and organizations where members have similar symptoms. </li></ul><ul><li>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: </li></ul><ul><li>www.morgellons.org </li></ul><ul><li>www.skinparasites.com </li></ul><ul><li>www.dpref.com </li></ul><ul><li>www.unknownskindisease.com </li></ul><ul><li>www.morgellons-research.org/morgellons </li></ul><ul><li>www.cherokeechas.com </li></ul>
  26. 26. DRAFT RESULTS <ul><li>Significant majority </li></ul><ul><li>middle age </li></ul><ul><li>white, non-Hispanic men and women </li></ul><ul><li>living in north half of GA </li></ul><ul><li>symptoms < 3 years (but as far back as 20 years) </li></ul><ul><li>do not report mold in the home </li></ul><ul><li>discontinued outdoor activity </li></ul><ul><li>visit doctor(s) and/or specialist(s) </li></ul><ul><li>Dermatology, Infectious Disease, GI, Internal Medicine, Neurology, Urology, Ophthalmology, Allergy, Rheumatology </li></ul><ul><li>self medicate </li></ul><ul><li>bleach, ammonia, inspect spray, dog flea dip, gasoline, kerosene, WD40, Windex, Lysol </li></ul>
  27. 27. DRAFT RESULTS (cont.) <ul><li>Insignificant majority or about equal </li></ul><ul><li>females / males </li></ul><ul><li>have / don’t have outdoor hobbies </li></ul><ul><li>precipitating event </li></ul>
  28. 28. DRAFT RESULTS (cont.) <ul><li>Population </li></ul><ul><li>The 10 county Atlanta metropolitan area has 53% of the population of Georgia </li></ul><ul><li>North, central, and south Georgia account for the remaining 48%. </li></ul><ul><li>North Georgia and the Atlanta area together account for 66% of Georgia’s population </li></ul>
  29. 30. DRAFT RESULTS (cont.)
  30. 31. 23% 12% 9% 20%
  31. 32. CONCLUSIONS <ul><li>Most of the case reports came from north Georgia and indicate contact with upturned soils. </li></ul><ul><li>There are associations supporting the hypothesis, but these associations are weak and not significant. </li></ul><ul><li>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. </li></ul>
  32. 33. EFFECTIVE TREATMENTS <ul><li>Add vinegar to shampoo </li></ul><ul><li>Complete body shave </li></ul><ul><li>Avoid antibacterial soaps </li></ul><ul><li>Dry body with paper towels </li></ul><ul><li>Encase bedding in vinyl covers </li></ul><ul><li>Wash all fabrics with bleach or, for colors, soak in vinegar. </li></ul><ul><li>If no children in household, set hot water heater to 155 degrees </li></ul><ul><li>Replace all carpets with linoleum or tile or vacuum daily </li></ul><ul><li>Keep pets outdoors </li></ul>
  33. 34. NEXT STEPS <ul><li>Continue analyses </li></ul><ul><li>Publish paper </li></ul><ul><li>Sampling </li></ul><ul><ul><li>Environmental </li></ul></ul><ul><ul><li>Biological </li></ul></ul><ul><ul><li>Pets </li></ul></ul><ul><li>CDC investigation </li></ul>

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