Understanding Chronic Lyme Disease. Kerry Lang November 5, 2017
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1 Understanding Chronic Lyme Disease Kerry Lang November 5, 2017
2 What is Lyme Disease?» Bacterial infection involving a spirochete named Borrelia Burgdorferi» Cousin of syphillis- The Great Imitator» There are many strains of BB- some only recently discovered» Transmitted through ticks» Discovered in 1981 in Lyme, Connecticut *It s LYME Disease, not Lyme s Disease!*
3 The Many Names of Chronic Lyme» Persistent Lyme Disease» Late Stage Neurological Lyme Disease» PTLDS (Post Treatment Lyme Disease Syndrome) = CDC s definition» MSIDS (Multi-systemic infectious disease syndrome)» Lyme-induced autoimmune disorder» Tick Borne Illness Until We Have Accurate Testing for ALL Stages of Lyme Disease, even the name Chronic Lyme Disease will remain controversial.
4 Prevalence of Lyme Disease County level raw prevalences for B. burgdorferi antibodies in domestic dogs aggregated from Source: PLOS One
5 How Lyme Disease Spreads
6 Prevalence of Lyme Disease Massachusetts: the Best and Worst Place for Lyme Disease Source: WBUR.org
7 Diagnostic Challenges with Lyme Disease
8 Misdiagnosis lymedisease.org
9 Misdiagnosis Common misdiagnoses include chronic fatigue syndrome, fibromyalgia, ADHD, Alzheimer s disease, depression, bipolar disorder, conversion disorder, stress, arthritis, and many more. lymedisease.org
10 Symptoms of Chronic Lyme Disease lymedisease.org
11 Severity of Chronic Lyme Disease Days of Poor Health per Month Employment Changes due to Lyme Disease lymedisease.org
12 Controversy of Lyme Disease - Two Standards of Care IDSA- Infectious Disease Society of America ILADS- International Lyme and Associated Diseases Society
13 Theories on Chronic or Persistent Lyme Disease» Biofilm theory» Persister bacteria» 3 forms of spirochetal bacteria- hard to treat» Co-infections/ exposure to other toxins» Immune system complications» MSIDS- Multi-systemic Infectious Disease Syndrome
14 Coinfections lymedisease.org
15 Common Treatments for Chronic Lyme Disease» Long-term antibiotics» IVIG (intravenous immunoglobin)» Diet changes» Hyperthermia treatment» Herbs/ essential oil protocols» Hyperbaric Oxygen Therapy» Ozone Therapy» Vitamins/Immune Support» Sometimes all of these at once!! There is NO CURE that works 100% of the time for EVERYBODY.
16 Financial Stress and Lyme Disease
17 Financial Stress and Lyme Disease lymedisease.org
18 Quality of Life and Lyme Disease lymedisease.org
19 Challenges of Living with Lyme Disease» Lack of Support» Not being validated by medical system» Loved ones not validating, supporting, or understanding Chronic Lyme Disease» Little funding or societal awareness» Not being believed» Isolation» Feeling alone and misunderstood» Not being able to socialize or leave home due to symptoms/fatigue» Difficulty communicating» Cognitive Changes» Memory and executive function deficits» Patents may present as spacy or even drunk- often have difficulty driving or keeping up with every day tasks» Inflammation in brain causing depression/ anxiety, etc.» Finances» Cost of treatment» Cost of no longer being able to earn income» Lack of disability/social security benefits» No GoFundMe Accounts» Symptoms» Debilitating neurological symptoms- difficult to find relief» Inability to participate in activities one used to enjoy» Unpredictable; many ups and downs» Treatment» Herxheimer reactions and uncertainty/ difficulty of treatment» Difficulty in finding the right providers and getting treatment covered» Protocols are often intensive and overwhelming- and patients are often left to fend for themselves.
20 The Perfect Storm for Mental Health Challenges
21 How to Heal from Lyme Disease Stress Relief Community support Validation Having a safe space Advocacy letting it out Meaning & purpose Mind/Body connection Mindfulness Holistic medicine rawlsmd.com
22 How Reiki can help those with Lyme Disease» Can help with inflammation» Helps with isolation» Can help induce meditative states in the brain» Human touch (releases oxytocin!)» Helps foster mind/body connection» Can help alleviate pain Reiki can be the tipping point for health & recovery
23 Reiki Before Reiki After Reiki
24 Other Ideas On Reiki and Lyme» Patient learning to do Reiki on themselves» Group Reiki» Reiki before or after counseling sessions, medical appointments» Journalling before or after Reiki» Art therapy exercises before or after Reiki» Body scans before/after Reiki
25 Things to Remember When Seeing a Lyme Patient» ASK» How are they feeling» About their treatment» Any changes in symptoms» About sensitivities (fragrance, sound, light, touch)» Don t be afraid to ASK about anything you are unsure of!» Understand key terminology for Lyme disease- Herxheimer reaction herxing, co-infections, babesia, bartonella, LLMD (Lyme Literate Medical Doctor)» Be mindful of their medical trauma, and the trauma of not being believed.» It s NOT THEIR FAULT that they are sick!» VALIDATE and hold space - it s easier than we think!» Notice your own feelings that emerge while working with a Lymie
26 Things to Avoid with the Lyme Population» Well, you look great!» You should try eating organic foods» I ve been tired lately too!» You re still not better?» Try meditating» Have you tried exercising?» My friend had Lyme but he s better now.» I can cure you!
27 Would you say.. to a cancer patient? Dr. Neil Spector, Duke University
28 Other tips» Refer, refer, refer!» Suicide Lifeline» Text to Crisis Textile» - help patients find support groups, mental health counselors, or Lyme treatment centers» lymedisease.org» ILADS.org» tickencounter.org (for prevention)» Be mindful of cognitive impairments» Have BOUNDARIES» Don t take things personally» Be an advocate!
29 To Learn More:» Follow The Dean Center on Facebook» PatientTalk.com» Movies:» Under Our Skin» UNREST
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