TOUCHED BY LYME: Keeping records for those who have died
LymeDisease.org 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 mylymedata@lymedisease.org. A team member will get back to you.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’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 dleland@lymedisease.org.
My daugher Melissa jones, died of significant complications of advanced Lyme Disease, Babesiosis, and other health issues on Feb 19, 2016. Anything I can help to help fight this unvalidaded, invisible disease among our health practitioners and our suffering patients and loved ones let me know. This is a criminal event to not porperly listen diagnose, treat, and offer significant therapeutic options to patients. No other disease would be treated this way.
Felipa, Words cannot express how sorry I am to hear about your daughter. You’re exactly right. No other disease would be treated this way.
I’m so thankful LymeDisease.org started the MyLymeData Project start collecting data on people with Lyme.
Dorothy, thank you for sharing the direct link of DURAY RESEARCH FOUNDATION where my/Jack’s story of our 35 yrs. of being NOT diagnosed or MISDIAGNOSED.
I sent Dorothy our story 5-6 months ago, but it was too long for the format used here. So this way it is 100% there now.
Yes, I tried entering info yesterday for Jack’s info, but ran into problems galore.
I’m glad you are addressing how to do this for us spouses wanting our deceased loved ones info recorded.
Is there an area to write in MORE INFO in this survey?
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You mentioned what is stated on DEATH CERTIFICATE.
In my case that shows lung cancer since he died 2 nights after being diagnosed with lung/liver cancer!!
It’s Jack’s BRAIN AUTOPSY showing WORLDWIDE HISTORY OF BB/LYME disease and LEWY body dementia. So this needs to be DOCUMENTED somewhere in mylymedata q/a!!
I’m trying to get Jack’s brain autopsy info AMENDED to Jack’s cancer death certificate as THEY were contributing factors to his death. They are fighting me like crazy to do ANYTHING like that plus getting Jack added to IOWA’S CDC lyme statistics!!
Again, this might be late in getting this published; but we got it done right, Dorothy?
So great to have met you, Dorothy, Phyllis Mervine, and Lorraine Johnson in St. Paul’s LDA conference.
Betty Gordon, Iowa activist
48 yrs. persistent lyme patient
35 yrs. misdiagnosed by 40-50 drs. UNACCEPTABLE!
This capability is very important. Otherwise a great resource of information for us all would be lost. And it will give people a way, on behalf of their loved one who died, a chance to help others.
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I lost my husband, Jim Taylor, on March 7, 2009 to suicide caused by the symptoms of Lyme. He couldn’t find a doctor who could diagnosis his all over body pain, extremely swollen and painful joints, the mental fog and confusion, a severe reduction in quality of life and finally, the Lyme invaded his brain. Within 6 months, he took his life because he believed he had early onset Alzheimer’s disease. He was a brilliant musician and historian – his music can be heard in the sound track of the movie, “Lincoln.” and is still being used to soothe children with extreme autism. I am not the only who has suffered the loss of Jim… The world lost as well.