TOUCHED BY LYME: Taking to YouTube–and knitting needles–in search of answers
A teenager with Lyme seeks answers on the internet, while knitting scarves to pay for medical treatment.
Up until 2007, Samantha Heinrich, a teenager from Tracy, CA, was a beaming picture of health and physical activity. She surfed the California waves. She played on a softball team. Then, out of the blue, she starting having weird symptoms. Eventually, she developed gastroparesis–a stomach disorder that made it impossible for her to eat or drink. She had to receive nutrition through an IV in her arm. Her doctors didn’t know how to help her.
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It took a while, but via Facebook connections, Samantha came to learn that gastroparesis is sometimes caused by Lyme disease. She and her family found their way to a San Francisco-area Lyme specialist, who diagnosed her with Lyme and coinfections in 2012.
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Friends and family members provided thousands of dollars to help pay for the treatments that insurance wouldn’t cover. And while Samantha says the Lyme treatments have helped in many ways, her case has since developed serious complications. Even the Lyme specialist is stumped about what to do next.
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Within the past year, Samantha has become extremely sensitive to chemicals. Exposure to everyday substances like bleach or perfume can throw her into long-lasting convulsions. And as of this past September, a new symptom: she can’t control her knees and has lost the ability to walk.
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In a gutsy, take-charge move in October, Samantha posted a YouTube video of herself, clearly demonstrating her seizures and leg problems. “My doctor suggested I post a video about what is going on with me,” Samantha states on YouTube. “She said ‘someone in the world must have seen this before and know what to do.’ “
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MRIs and xrays have come back normal, she says, and physical therapy doesn’t seem to be helping. Samantha is throwing her questions out into cyberspace, wondering if anyone has a useful suggestion to offer. Even if you don’t, she asks that you share the video and help it go viral.
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As I write this blog Sam’s video has received more than 30,000 hits. Has it brought in any helpful suggestions? “We received a few that my doctor is testing for,” she said, “but the results are not in yet.”
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As she waits for new developments, Sam is finding a way to keep busy. She knits ruffle scarves and sells them on Etsy. As recently featured in her local paper, the Tracy Press, Sam learned how to knit from her Grandma, and started knitting and selling the scarves to help raise money for her Lyme treatment. So far, she’s sold 170 of them, netting more than $2450.
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Sam, I am humbled by your spirit in the face of such obstacles. I’ve already placed my order for a Lyme green scarf through your Etsy site. And I’m reposting your YouTube video here, in hopes that my readers will share it and help it go even further than it already has. We’re rooting for you, girl! I hope you find the answers you need.
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TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Did you have an FDG-18 pet scan or FDG-18 pet MRI and a brain spect? My daughter has lyme and is suffering with bonecrushing fatigue, insomnia & severe cognitive issues, and all her tests were abnormal (hypoperfusion, hypometabolism in all the lobes, basal ganglia & cerebellum). She also has hashimoto’s, bartonella & babesia. Yet she does not have seizures and can walk. None of this makes sense for any of us. God bless you Samantha!
dorothy,
thanks for this touching article on samantha.
posted it and video on 1 lyme board and spreading the word to others.
didn’t see how much she is charging for scarves and how to order; would you clarify that please? big thanks
bettyg, iowa activist
I have some similar symptoms. See my blog for videos of me. Not as pronounced in my head and torso, but feet and legs and right arm can really get going. EEGs show no seizure spindles. After many years, I have been diagnosed with Parkinson’s (as well as Lyme). I’m older than you, and it started when I was 50. My blog is all about PD and Lyme and how they might be related. I had negative brain scans for many years until one this week called a DaT scan. It measures the dopamine system in the brain. But before you do that, do a trial of Sinemet (Levadopa/Carbidopa) and see what happens. I would suggest you see a movement disorders doctor such as the one I saw at UCSF Movement Disorders Clinic. I didn’t want to try the PD drugs but I have to confess it makes all the difference in the world. I can actually participate in activities again, play piano, type, and so forth, though I do have to take Sinemet every 4 hours. I am still treating Lyme, but in the meantime, the Sinemet and supporting drugs (gabapentin and selegeline) make life liveable for me.
You can write me through my blog. Blog address is bobcowart.blogspot.com.
Hi Samantha – you can contact me at sf_seal@sbcglobal.net to discuss chemical sensitivity issues – Robin
I am suffering from Lyme that causes brain fog no equilibrium which has caused me 4 falls downstairs broken shoulder 3 head fractures, difficulty speaking words don’t come out awful parasite cysts that have scarred me terribly. I also had meningitis and hydrocephalus for which a shunt was put in. My neurological system has been compromised, had an incident of psychosis have been seeing psychiatrist for 7 yes that does nothing for me. I forced my pulmonary Dr. To do western blot and I came back positive for Lyme. I live in Houston and can’t even GEF a Dr. To do a brain scan or GI series as I believe I have intestinal parasites in my liver that has already spread to lungs with constant runny nose sores everywhere coughing hair falling out blurry vision. I’ve tried to reach out to several websites to find llmd in area as I know they exist by reading peoples blogs but cannot find a way to get a list. I am reaching out thinking you must have many contacts that maybe can help me, if you could email me with a name and email address to lead me in right direction, my life is slipping away , I feel. Thank you.