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.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at email@example.com.
- December 10, 2013 at 12:39 pm
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!
- December 11, 2013 at 10:38 pm
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
- December 11, 2013 at 11:55 pm
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.
- December 16, 2013 at 7:47 pm
Hi Samantha – you can contact me at firstname.lastname@example.org to discuss chemical sensitivity issues – Robin
- January 23, 2015 at 7:09 pm
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.
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