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My Lyme Disease<br />May 2010-Present<br />
Before<br />After<br />
Journey for a Diagnosis<br />A three day hospitalization<br />Three primary care physicians <br />A rheumatologist<br />A ...
Inflammatory Arthritis<br />Ataxia<br />MS-like inability to walk<br />Inflamed spine—unable to stand<br />Dystonia<br />S...
Suggested Diagnosis<br />Multiple Sclerosis<br />HIV/AIDS<br />Other bacterial infections or a virus<br />Autoimmune disea...
Who suggested Lyme disease?<br />A twenty-two year old with M.E. and chronic Lyme disease<br />
My Illness(es)<br />Lyme Disease (Late Stage Neurological)<br />Babesia<br />Bartonella<br />Anaplasmosis<br />Mycoplasmos...
Testing is not accurate<br />In the hospital<br />ELISA was negative<br />Spinal tap was negative<br />First LLMP<br />Lab...
Treatment<br />Oral Doxycycline (200 – 400 mg)<br />Oral Minocycline (200 – 400 mg)<br />Oral Zithromax(300 – 600 mg)<br /...
9 Months Into Treatment<br />No longer have MS-like walking problems<br />More energy<br />No more seizures<br />“Good day...
Lyme Action PA<br />Bill has three parts<br />Prevention, Education and Surveillance<br />Doctor protection<br />Insurance...
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My lyme disease

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My presentation for my support group.

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Transcript of "My lyme disease"

  1. 1. My Lyme Disease<br />May 2010-Present<br />
  2. 2. Before<br />After<br />
  3. 3. Journey for a Diagnosis<br />A three day hospitalization<br />Three primary care physicians <br />A rheumatologist<br />A neurologist <br />An Infectious Disease Specialist<br />A Chronic Fatigue Syndrome Specialist<br />3 MRIs<br />A spinal tap<br />A tilt table test<br />Countless blood tests<br />
  4. 4. Inflammatory Arthritis<br />Ataxia<br />MS-like inability to walk<br />Inflamed spine—unable to stand<br />Dystonia<br />Seizures<br />Confusion<br />Memory Loss<br />Heart palpitations<br />Severe malaise<br />Dizziness<br />Brain Fog<br />Severe Fatigue<br />Muscle weakness<br />Pain (stabbing, shooting, muscle, bone, joint…)<br />Weight loss<br />Neuropsychiatric symptoms<br />Dysgraphia<br />Weakness<br />Air hunger<br />Symptoms<br />(Well, some of them)<br />
  5. 5. Suggested Diagnosis<br />Multiple Sclerosis<br />HIV/AIDS<br />Other bacterial infections or a virus<br />Autoimmune disease<br />Psychosomatic<br />Fibromyalgia<br />Chronic Fatigue Syndrome<br />Postural Orthostatic Tachycardia Syndrome<br />
  6. 6. Who suggested Lyme disease?<br />A twenty-two year old with M.E. and chronic Lyme disease<br />
  7. 7. My Illness(es)<br />Lyme Disease (Late Stage Neurological)<br />Babesia<br />Bartonella<br />Anaplasmosis<br />Mycoplasmosis<br />Chronic Cyclomegalovirus(CMV)<br />Postural Orthostatic Tachycardia Syndrome (POTS)<br />
  8. 8. Testing is not accurate<br />In the hospital<br />ELISA was negative<br />Spinal tap was negative<br />First LLMP<br />Lab Corp Western Blot was negative<br />LLNP ran IgeneX:<br />IgM Negative<br />IgG Alt Positive<br />IgG CDC Positive<br />I also had a very low CD57 (Only low with Lyme and AIDS patients)<br />
  9. 9. Treatment<br />Oral Doxycycline (200 – 400 mg)<br />Oral Minocycline (200 – 400 mg)<br />Oral Zithromax(300 – 600 mg)<br />Mepron<br />Next month: Flagyl<br />
  10. 10. 9 Months Into Treatment<br />No longer have MS-like walking problems<br />More energy<br />No more seizures<br />“Good days” are getting better, “bad days,” not so bad<br />Less arthritic problems, less brain fog<br />Less malaise, unless herxing (then more!)<br />
  11. 11. Lyme Action PA<br />Bill has three parts<br />Prevention, Education and Surveillance<br />Doctor protection<br />Insurance provision<br />You can make a difference!<br />Pennsylvania Lyme Bill<br />House Bill 272<br />Senate Bill 210<br />
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