ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

Meta-analysis adds evidence to association between omega-3 supplementation and lower heart rate

Friendly User's Guide for the Timing of Nutritional Supplements

The Health Benefits of Manuka Honey

Increase Your Magnesium Intake

Vitamin D supplementation could ease IBS symptoms

Top Tips to Boost Your Immunity

11 Amazing Health Benefits of Using Baking Soda

Nicotinamide riboside shows promise for treatment of Alzheimer’s disease

Exercise, calcium, vitamin D, and other factors linked with fewer injurious falls

Mediterranean diet associated with lower risk of aggressive prostate cancer

Print Page
Email Article

Touched By Lyme: Keeping Records for Those Who Have Died

  [ 1 vote ]   [ Discuss This Article ]
By Dorothy Kupcha Leland • • December 6, 2016

Touched By Lyme: Keeping Records for Those Who Have Died
Reprinted with the kind permission of Dorothy Kupcha Leland. To read the original article, click here.
TOUCHED BY LYME: Keeping records for those who have died launched the MyLymeData project a year ago, in order to capture the experiences of people with Lyme disease. When participants sign up, they are asked questions like: Do you know when and where you were infected? What symptoms did you experience? How long did it take you to get diagnosed? Which treatments were tried? Which ones helped or didn’t help?
More than 6000 people have signed up so far, making this the largest study of chronic Lyme patients ever undertaken.
Alas, until recently, there was a segment of the population that we weren’t set up to include: Lyme patients who have died. Now, however, adjustments to MyLymeData allow you to enter information on behalf a person who is deceased.
If your spouse or other family member had Lyme and has passed away, you’ll be able to tell us what information you know about the person’s Lyme experiences, what the cause of death was, and whether or not Lyme disease was listed on the death certificate.
This kind of information has never been systematically collected, and opens the possibility for us to gain new understanding of this aspect of Lyme disease.
Betty Gordon is a long time Lyme patient and advocate that I’ve known via social media for many years. I recently had the chance to meet her in person.
She’s been wanting to share information about her deceased husband Jack’s Lyme experience since she first heard about MyLymeData. On autopsy, Jack’s brain was found to have evidence of both Lewy body dementia and Borrelia burgdorferi (Lyme disease).
According to renowned researcher Dr. Alan MacDonald, this was the first time that Borrelia had been documented in Lewy body tissue.
You can read details of Jack and Betty’s story here.
If you want to share information about a Lyme patient who has passed away, there are two ways to do it. If you are enrolled in the program yourself, there is now a place to click to enter information about someone who has died. Otherwise, you can just join in that person’s name, and answer the questions on that person’s behalf. There’s a spot to indicate that you are answering for someone who has died.
When it comes to solving the challenges of Lyme disease, the more information the better.
Click here for more information about MyLymeData.
If you have trouble registering or entering data, please send an email with your phone number to A team member will get back to you.

TOUCHED BY LYME is written by Dorothy Kupcha Leland,’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at

Post a Comment

Featured Products From the ProHealth Store
Optimized Curcumin Longvida® Mitochondria Ignite™ with NT Factor® FibroSleep™

Article Comments

Be the first to comment on this article!

Post a Comment

Optimized Curcumin Longvida with Omega-3

Featured Products

Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get Energized with Malic Acid & Magnesium

Natural Remedies

Undenatured Type II Collagen - Chicken Soup for Your Joints Undenatured Type II Collagen - Chicken Soup for Your Joints
The Most Powerful Natural Antioxidant Discovered to Date - Hydroxytyrosol The Most Powerful Natural Antioxidant Discovered to Date - Hydroxytyrosol
Green Coffee Extract: Unique Obesity Intervention Green Coffee Extract: Unique Obesity Intervention
Secret Nutrient for Radiant Skin Secret Nutrient for Radiant Skin
Soothe, Heal and Regulate Your Digestive System with Nutrient-Rich Aloe Vera Soothe, Heal and Regulate Your Digestive System with Nutrient-Rich Aloe Vera

ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
Credit Card Processing
Get the latest news about Fibromyalgia, M.E/Chronic Fatigue Syndrome, Lyme Disease and Natural Wellness

CONNECT WITH US ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus

© 2018 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map