Many voices say: “Here’s why I joined MyLymeData”
By Tiffany Salmon
We launched MyLymeData over a year ago, providing an effective way for patients to pool diagnosis and treatment experiences. This “big data” project gathers information about the lived experience of Lyme patients straight from the horse’s mouth. What symptoms did they have? What treatments did they try? What helped–and what didn’t?
MyLymeData asks the questions that health officials routinely ask about other illnesses–but have never asked about Lyme disease in such a comprehensive way.
The goal is to let this data lead researchers in the most promising direction—towards a cure for Lyme disease. (You have to have a clear picture of what you’re dealing with in order to fix it, right?)
The response from the Lyme community has been encouraging. More than 7300 people have signed up so far, putting us in the top 10% of patient registries in the nation.
Over the months that MyLymeData has been ongoing, we have published a number of blogs from individual patients about why they take part in this project. Here’s a look at some of them.
Dana Parish
Singer/ Songwriter
“MyLymeData… is a means for patients like me to wring some benefit out of our horrific Lyme experiences. By sharing information about our symptoms and treatment—including what worked and what didn’t—we can help point the way for medical researchers who are searching for a cure for Lyme.”
Silver Feldman
From Southern California
“I signed up for MyLymeData because I’m committed to Lyme patients being diagnosed and treated properly. By adding your Lyme data to MyLymeData, you can help bring about the day when no 13-year-old with Lyme will ever again feel compelled to draw up a last will and testament.”
Sherrill Franklin
Lives in Chester County, Pennsylvania
“MyLymeData can give us new power over a disease that has brought many of us to our knees. Information on MyLymeData is confidential. You’ll learn you’re not alone. You’ll help yourself and you’ll help others. You’ll make what’s invisible, visible so that it can be studied, understood and cured.”
Sandi Bohle
From Southern California
“I’ve learned a lot about what works for me through these years of treatment. And I don’t want all this ‘education’ to go to waste. That’s why I’ve signed up for MyLymeData. It’s a way for Lyme patients to pool their experiences, so researchers can look for patterns—an important step to finding effective testing and treatment. And eventually a cure!”
Ruben Lee Sims
Lives in Southern California
“This important project gives Lyme patients a chance to make a real difference. By pooling our information, we can help build up the knowledge base of how real people experience Lyme disease. This will help direct researchers in a more useful direction. No one in the military—or anybody else in this country—should have to suffer so long without proper medical care.”
Sandy Reyes
Works in Human Resources for the State of Delaware, teaches at Wesley College, and is a member of Delaware’s Lyme Disease Prevention Task Force.
“I’m sharing my story in hopes that other people will not have to repeat my experiences. That’s also why I’ve signed up for MyLymeData. The patient-powered research project pools information from many people with Lyme—about their symptoms and what treatments have helped or not helped. That kind of information has never been collected from Lyme patients on a large scale before.”
Rachel Leland
From Arizona
When Rachel Leland was wheelchair-bound (often bed-bound) from Lyme disease as a young teenager, she learned to edit videos on her computer. This is a video blog about why she thinks MyLymeData is so important. Click below to view Rachel’s story.
Eliza Hemenway
Author and filmmaker
“I joined MyLymeData on behalf of my daughter, because I know that the more we connect the dots, the more we come together as a community and share our information, the closer we get to better treatment options.”
Jesse Ruben
Singer and Songwriter
“The more information we have, the better. Being able to catalogue symptoms in the community versus what’s being said by some medical professional is important. It’s essential to know what’s happening so that we can know how to make it better. If it had only taken me one doctor, and all my treatments had been covered, that would have saved me so much time and frustration. This is why research is important.”
David Slade
Father, husband, nutritional health coach, Permaculture Farm business owner, and adjunct instructor at Keystone College
As an individual who has horrendously suffered from Lyme disease, I can honestly say that education and information are the two biggest tools that we have available in this fight. MyLymeData is a cutting edge tool that will help provide information for those who suffer. As someone who lives in Pennsylvania, Lyme disease is a serious problem and raising awareness is crucial.”
MyLymeData is using technological advances to give patients a voice and easily include them in the discussions that impact them. Our goal for MyLymeData is 10,000 participants. With strength in numbers, we can finally overturn the research that has not helped but has only harmed us. When 10,000 patients speak, researchers will have no choice but to listen. If you have not joined MyLymeData, we encourage you to join today.
We held our first patient education conference “MyLymeData 2017: Overcoming Lyme Disease”, which took place in San Ramon, CA, on April 8. It provided an update of latest MyLymeData results, along with presentations from four Lyme-treating physicians.
Click here for more information about the conference.
I’m 72. Just went to another doctor in Ft Myers. I brought all my years of medical records and positive IgG and Western blot. First thing Dr. Said is ” I don’t treat Lyme and no drs. In area do either. So I’m getting tests, being sent to another rheumatologist, neurologist and cardiologist. More tests, no help with symptoms and pain. I’m 72, don’t have much choice, think I’m going to end the pain myself.
Karen, I’m so sorry that you are having such a hard time with your symptoms. Have you seen a Lyme literate doctor? Also, please call the national suicide hotline if you have feelings of harming yourself. 1-800-273-8255. There are also support groups all over the country, where patients get together and provide understanding and possible solutions. Find a support group in your state here: https://www.lymedisease.org/get-involved/take-action/find-your-state-group/
Don’t let a few doctors steal your hope. Keep fighting, we’re fighting with you.
For resources in Florida, contact the Florida Lyme Disease Association, http://www.flda.org/
No I haven’t seen a ILLAD doctor as there are none in SWFL. I’m to darn old to go through months or years of IV therapy that isn’t even covered by insurance. I’ve made up my mind that in Frbruary I’m going to China with my Chinese sister in law and will be treated by a Chinese herbal doctor. Screw the US and their lack of treatment.
Karen, don’t give up! You have a lot of living left to do and I am sure alot of people who love you and that you love. Don’t let the doctors comments effect you so deeply. There is help for you. Ask a friend or family member to help you find a lyme literate doctor. Also call the hotline and speak to a friend or pastor about your feelings.
I joined MyLymeData to get information because the database is very important. Here Chronic Lyme disease doesn’t exist and therefore you are a liar. I hope with information, research and changing government laws the future will be better for all Lyme patients.
I don’t know if that will ever happen in my life but maybe in the future. The other reason is the current state of health our health care system, insurance, and the inability to pay for Lyme treatment.
I go to a chiaropacter, get acupuncture, exercise, and try to eat well. I’ve also taken herbal suplements for biofilms. The one and only dose of antibiotics worked a short time and then it was the same as before. Some of it helps and we must move forward. I was 65 when I was tested and as we age it is more difficult to get help. The research and books I’ve read help until there are days you don’t feel well, That is when I make sure I walk, go the YMCA, or try to get busy.
I joined MyLymeData because I have had Lyme Disease since Oct. 2006. I believe we need to join together in order to help those who are suffering terribly. I believe in this group.
Karen, I am feeling your pain. I was diagnosed in October, yet insurance denied my claim because it was not severe enough for the CDC guidelines. My doctor retired in December, in mid-review with insurance company. I have been struggling to get through every day. I just came home from a 4 day stay in the hospital because of chest pain. The hospital convinced me that I was having a heart attack. After every test was done, it was determined that my heart was healthy. I told every doctor that I have Lyme, yet they all turned a deaf ear, telling me that there is not enough research on Lyme and it is not understood. I have been to countless doctors (9 in 2017 alone) and yet I cannot get treated. Because they DO NOT UNDERSTAND. I just borrowed money from my elderly mother to get definitive blood results from IGenex labs.
Karen, please, I have felt the same as you do now. I feel that way many days. But please don’t give up. Take a nap, sit in the sun, listen to music, do SOMETHING to make your heart smile.
Teri