My presentation for my support group.

1. My Lyme Disease May 2010-Present

2. Before After

3. Journey for a Diagnosis A three day hospitalization Three primary care physicians A rheumatologist A neurologist An Infectious Disease Specialist A Chronic Fatigue Syndrome Specialist 3 MRIs A spinal tap A tilt table test Countless blood tests

4. Inflammatory Arthritis Ataxia MS-like inability to walk Inflamed spine—unable to stand Dystonia Seizures Confusion Memory Loss Heart palpitations Severe malaise Dizziness Brain Fog Severe Fatigue Muscle weakness Pain (stabbing, shooting, muscle, bone, joint…) Weight loss Neuropsychiatric symptoms Dysgraphia Weakness Air hunger Symptoms (Well, some of them)

5. Suggested Diagnosis Multiple Sclerosis HIV/AIDS Other bacterial infections or a virus Autoimmune disease Psychosomatic Fibromyalgia Chronic Fatigue Syndrome Postural Orthostatic Tachycardia Syndrome

6. Who suggested Lyme disease? A twenty-two year old with M.E. and chronic Lyme disease

7. My Illness(es) Lyme Disease (Late Stage Neurological) Babesia Bartonella Anaplasmosis Mycoplasmosis Chronic Cyclomegalovirus(CMV) Postural Orthostatic Tachycardia Syndrome (POTS)

8. Testing is not accurate In the hospital ELISA was negative Spinal tap was negative First LLMP Lab Corp Western Blot was negative LLNP ran IgeneX: IgM Negative IgG Alt Positive IgG CDC Positive I also had a very low CD57 (Only low with Lyme and AIDS patients)

9. Treatment Oral Doxycycline (200 – 400 mg) Oral Minocycline (200 – 400 mg) Oral Zithromax(300 – 600 mg) Mepron Next month: Flagyl

10. 9 Months Into Treatment No longer have MS-like walking problems More energy No more seizures “Good days” are getting better, “bad days,” not so bad Less arthritic problems, less brain fog Less malaise, unless herxing (then more!)

11. Lyme Action PA Bill has three parts Prevention, Education and Surveillance Doctor protection Insurance provision You can make a difference! Pennsylvania Lyme Bill House Bill 272 Senate Bill 210