A Data Tracking Journey From Chronic “Unknown” Illness to Crystal Clear Diagnosis Quan:fied Self Conference October 2013, San Francisco
Unknown Chronic Illness 2006 - 2007 Myalgia Exhaus6on Exercise Intolerance Recovery Year – Bali, Indonesia & Chengdu, China
Unknown Chronic Illness - June 2012 January 2012 Entrepreneur…. Gym Beast…. Overzealous Par:er…
Lost in Complexity of Symptoms Loss of Spark and Lump on Head Neuromuscular Acute Control Headaches Numb Limbs/ Nervous Emo6onal Face Extremes Stress Neuropathy System Trembling Brain Insomnia Weak Muscles Dizzyness Altered Consciousness Brain Fog Short/ long S6ff & Aching Exercise term memory Joints Intolerance loss General Myalgia S6ff Neck Flu-ness Diarrhea Cons6pa6on Gut Weight loss IntermiGent Fevers Nausea/ Stomach Ache Exhaus6on Vomi6ng
Approach #1: “Conven:onal Route” Conven:onal Data Collec:on • No Abnormali:es – EEG (ElectroEncephaloGraphy) – MRI (Magne:c Resonance Imaging) – CT Scan (Computed Tomography) • Minor abnormali:es within ‘normal reference range’ – CBC (Complete Blood Count) – Liver Func:on – Lipids – hs-CRP
Approach #1: Conven:onal Route” hs-CRP Inflamma:on Acute + Chronic Spikes Chronic Illness Start Event Strange Acute Illness 1.9 2 Actual 1.8 1.6 1.4 hs-CRP (mg/L) 1.2 1 0.84 0.8 0.55 0.52 0.6 0.4 0.37 0.34 0.28 0.4 0.2 0.29 0.2 0.2 0
Approach #1: “The Conven:onal Route” LDL Infec:on Acute Spike Chronic Illness Start Event Strange Acute Illness 250 232 189 200 159 154 151 149 144 LDL (mg/dL) 135 150 93 90.4 100 Op6mum Maximum Actual 50 0
Approach #1: “Conven:onal Route” Takeaways • Problems: No progress with Conven:onal medicine – Non-acute illness = Labs in “normal reference range” – Doesn’t fit “conven:onal templates” for illness • Progress: Baseline labs prior to sickness – Showed ‘unhealthy change’ – Some kind of infec:on? (LDL, CRP spikes)
Approach #2: “Track Everything” Data Collec:on Labs Self Tracking • Heavy Metals (Doctor’s Data) • Symptoms • Vitamin D • Blood sugar monitor • Gene:cs (23andMe) • Sleep dura:on • Micronutrient deficiencies • Stool frequency/ (Spectracell) consistency • EFA (Essen:al Fajy Acids) • Food intake • Iron/ Ferri:n Load • Supplement intake • Homocysteine • Gut environment (Metametrix) Lumen Trails iPhone App www.lumentrails.com
Approach #2: “Track Everything” Quan:fying Symptoms + Factors = Confusing Mess 10000 10 8000 8 Supplementa6on (Mcg/ Mg) Symptom Severity (1 - 10) 6000 6 4000 4 2000 2 0 0 3-Aug-12 2-Sep-12 2-Oct-12 1-Nov-12 1-Dec-12 M-B12 - Jarrows (Mcg) M-B12-Enzyma:c Therapies M-B12-NOW A-B12-Country Life Folic Acid Folinic Acid Jarrow Methyl Folate (Quatrefolic) Solgar Folate (Metafolin) Mcg Upgraded Glutathione (Mg) Lipoceu:cal Glutathione (Mg) NAC (Mg) Symptoms
Approach #2: “Track Everything” Journal Factors + Quan:fy 1 Symptom = Insight 10 8 Energy Levels 6 4 2 0 12/15/12 12/18/12 12/21/12 12/24/12 12/27/12 12/30/12 1/2/13 1/5/13 Coffee or Chocolate = Energy Crash
Approach #2: “Track Everything” Elimina:on Experiment to Prove Pet name given to illness project Experiment Hypotheses
Approach #2: “Track Everything” Takeaways • Progress: ‘Specific’ avoidance helps manage symptoms – Gluten, Casein = Gut Issues – Chocolate and Coffee = Energy crashes – Are these clues? • Problems: – No closer to a ‘diagnosed illness’ progress – How can I work smarter?
Approach #3: Find “Uniqueness” Nervous System and “Trembling” Loss of Spark and Lump on Head Neuromuscular Acute Control Headaches Numb Limbs/ Emo6onal Face Extremes Stress Neuropathy Trembling Insomnia Weak Muscles Dizzyness Altered Consciousness Brain Fog Short/ long S6ff & Aching Exercise term memory Joints Intolerance loss Myalgia S6ff Neck Diarrhea Weight loss IntermiGent Cons6pa6on Fevers Nausea/ Exhaus6on Vomi6ng
Approach #3: Find “Uniqueness” Data Collected • Lab Test – Epstein Barr Virus an:bodies (raised) • Experiment – 1 week on psychoac:ve drug Deanxit to link to sympathe:c nervous system ac:va:on – (Stopped the trembling)
Approach #3: Find “Uniqueness” Takeaways • Progress: – Got a diagnosis “Chronic Fa:gue Syndrome (CFS)” • Problems: – CFS is not a differen:al diagnosis. Groups people loosely with similar symptoms and very rough biomarkers. – CFS is an incurable and progressive illness.
Approach #4: “Ajack Everything!” Aser Lots of Reading… Limit Exposure Chela:on / Toxin Removal Support & LEGEND Bypass Defects Diseased Detox Process Supports in Body Metabolic Stress / Free Radical Radia:on Toxins Methyla:on Ac:vity Lack of Consump:on (X-Rays, (Mycotoxins, Biotoxins, Gene Defects Root Cause (Exercise) Sleep (Oxidized Food) Sun) Metals, Chemicals) An:oxidant Inputs to Support Disease Interference Recovery Interven:ons Thiol + Enzyme Thiol + Enzyme Metabolic Rate Free Radical An:oxidant An:oxidant System Increase Burden Increase Deple:on Overwhelmed Repair & Immune System Vicious Mitochondrial Limit Exposure Regenerate Ac:va:on Damage Mitochondria Declining Circle Pathogens (virus, bacteria, parasite, fungi/ molds) Internal Free Radical Targeted An:- Nega:ve Feedback Produc:on Increase Pathogenics (an:bio:cs, an:virals, immune system modulators, an:microbials)
Approach #4: “Ajack Everything!” Data Collec:on Blood Labs • – Methyla:on profile and gene:cs (low methyla:on/ glutathione, high oxida:on, low detox func:on) – Mitochondrial profile (low mitochondrial func:on, high DNA damage) Urine Labs - substrates • – Urine Amino Acids (high ammonia) – Essen:al Elements (low potassium) Pathogens/ Toxic burden • – Stool test (Blastocyst hominis, helicobacter pylori posi:ve) – Heavy metals urine and hair tests (high arsenic, mercury, uranium, cesium) Biometrics via Tracking Devices • – MyBasis watch - perspira:on, heart rate, sleep (night sweats, short sleep dura:on) – HRV monitors - emwave2, chest strap + HRV sense (low HRV, high stress, sympathe:c ac:va:on, heart rate jump on exer:on)
Approach #4: “Ajack Everything!” Homocysteine Op6mum Maximum Actual 12 9.68 9.23 10 Homocysteine (µmol/L) 7.5 8 7.1 6.6 6 4 2 0
Approach #4: “Ajack Everything!” Takeaways • Progress – Lots of “out of normal reference range” data – Clear methyla:on and mitochondria damage – Managing condi:on now – not gevng worse. – Silverlining: Discovered many other health issues
Approach #4: “Ajack Everything!” Takeaways • Problems – High investment, low return: Lots of :me and effort to make lijle progress. – No Clear Cause: No clear cut hypotheses for cause of illness supported by data. – Not likely to cure: Some people go into remission through symptoms management, but not cured.
Approach #5: Find “Big Data” Who aggregates and analyzes lots of data? • Methyla6on and CFS >> Dr. Amy Yasko – All pa:ents repor:ng back data monthly – Wide variety of tests – Analyzes aggregate data by gene:c fingerprint – Adjusts hypotheses and protocols on ongoing basis
Approach #5: Find “Big Data” Cri:cal Mass of Insights: The “Mold” Connec:on • Dave Asprey’s blog – Coffee + chocolate osen contain “Mycotoxins” – Mycotoxins are toxin secreted by Mold • Unique symptoms – Coffee + Chocolate = Energy crash • Flashback: I stayed in a house with visible mold in 2011
Approach #5: Find “Big Data” Who aggregates and analyzes lots of data? • “Mold” and Biotoxin Illnesses – Dr. Ritchie Shoemaker – 16 years of data and published studies – Clear recovery protocol for “Cure”
Approach #5: Find “Big Data” Data Collec:on • Dr. Ritchie Shoemaker – “Biotoxin Illness” – Screening: Visual Contrast Sensi:vity, Symptoms Clusters – Specific Gene6cs: HLA - Human Leukocyte An:gens (Mold suscep:ble, post-lyme suscep:ble) – Specialized labs: Innate immune system inflamma:on markers (C4a, C3a, TGF-Beta 1) and many other markers of differen:al damage
Approach #5: Find “Big Data” Takeaways • “Winning!”– Clear diagnosis for Biotoxin Illness – Symptoms cluster posi6ve : sta:s:cal significance – Visual Contrast Sensi:vity posi6ve : > 50% below controls – Gene:c fingerprints posi6ve : Both biotoxin and methyla:on defect suscep:ble – Lab fingerprints posi6ve : Specific inflamma:on present
Conclusion Each Approach Pushed the Journey On… Clear Cut Diagnosis Iden6fied Many Biomarkers to Cri:cal Mass of Insights Fix Narrowed Progress Methyla<on, Research Area Eliminated to Mitochondria Typical Chronic etc. Weird Insight Illnesses Fa<gue Coffee + Cancers, MS, Syndrome chocolate = Parkinsons, Energy Crash Viral meningi<s etc. 3 4 1 2 5 Conven6onal Track Find Find AGack Route Everything “Unique” “Big Data” Everything
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