TOUCHED BY LYME: Teen with Lyme will be featured on ABC's 20/20 show
Her YouTube videos caught the attention of ABC news.
Elaina P. is a New Hampshire high school student who has been blogging about her experience with Lyme disease since 2008. Just a couple of weeks ago, her mom posted a couple of Elaina’s videos on YouTube, which were noticed by some ABC news producers working on a segment about teens with hard to explain illnesses. One thing led to another, and here’s how Elaina explained it in her blog:
“For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I’m used to just doing my thing pretty quietly but there was nothing quiet about the new visitors.”
The show will air this Friday, 10 pm, on ABC News.
Click here to see Elaina’s blog and view her videos.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
.
This is wonderful news, and I will remain optimistic that the message gets through the filter of the establishment position on chronic Lyme. Bravo Elaina. At the same time, I want to say bravo to ALL of those who suffer from this horrible illness.
I was the network administrator for the Merrimack Valley School District in Penacook NH from 1995 thru 2005, until finally resigning in 2006 and succumbing to Lyme Disease. Misdiagnosed with anxiety, depression, severe fatigue, pain in the extremities and severely debilitated cognition left me 95% incompetent and disabled. Lyme disease can take everything from you – job, property, home, family – everything you hold dear. After the third time tested with two false negatives, the Igenex test came back positive in 2010 after 30 years of mis-diagnosis. Now, after 28 months of persistent treatment with a protocol of antibiotics and supplements, I am slowly getting my life back – one day at a time. The myths that Lyme is easy to diagnose and easy to cure are not true – it is often diagnosed too late to cure with a simple 30 days of doxycycline. The cost to health care is enormous, to the individual, everything, and the cost to society, incalculable. Left undiagnosed or untreated, a slow and agonizing death is inevitable, but you will wish it were over and done long before that happens.
To the man who posted above- you are a beacon of light beaming across a dark and murky sea. As I was reading it, I had a feeling these words sounded familiar. Then the fine print at the bottom showed your name, and I thought..”Wow.” To all you readers, please know that once proper treatment begins, there IS hope. There IS a way back. We all need to stick together and fight this battle medically and politically. PLEASE help Lymedisease.org fight this by adding your name to their petition. Copy and paste this into your web browser. https://www.lymedisease.org/petitionscript/index.php
dr. jones saved our lives . all of my 4 children had lyme as well as melsyf. one of my children was so severe he couldn’t learn how to read. he also lost his vision in 1 eye. thanks to dr. jones he has fully recovered as well as my other children. he is a hero in my eyes. doctors need to learn symptomatic diagnosis. all of our blood work was negative for many complex reasons. our immune system was so beaten down that it couldn’t produce antibodies until we were treated for months
Dorothy, thank you for posting this!
Our board, mdjunction.com lyme board, heard about this 1st hand from Elaina’s MOM, our member!!
Each video was a real tear-jerker.
To the man above, I was also misdiagnosed for 35 long yrs. by 40-50 drs; UNACCEPTABLE!
PRAYING 20/20 will do Elaina/OUR stories justice!! we’ll have to be sure to give them feedback promptly … one way or the other!
The tape recorders will be going like crazy!! 1st, Dr. Phil’s 30 minutes; now this…15-20? minutes.
bettyg, iowa activist FOREVER 😉
Thank you all for watching and commenting. I appreciate the support and hope I had the wisdom to spread the word and be a good spokesperson and advocate for all! MDJunction is a great site as well as here and I am hoping to see you all on my blog! <3
I hate they use the word Bizarre! My daughter is currently suffering beyond belief. Was misdiagnosed from age 8 to 13. She has suffered paralysis, brain fog, short term memory loss, severe pain, photophobia, and the list is 3 pages long! All tests by various drs and hospitals showed nothing was wrong!!! Please beware. She has bartonella as well. Drs. That don’t believe this is real, should be injected with the disease and let it sit for years. I bet they would be singing a different tune if it were them! I cannot even express the anger I have towards them.
As father of a dhuagter with Lyme plus co-onfections-(took 5.5 years to diagnose thanks to the IDSA idiots!), I tend towards cynicism. But as soon as we saw Dr. Jones she received the diagnosis and treatment needed and he quite likely saved her life. He staff are ALWAYS there when needed. Thanks! The term saint is far too banal for one with his rare brand of steely courage. He needs desperate $ help to cure the ill but scorned children. That includes YOURS! Please contribute NOW! Marshall
Im a mother of a girl sfeufr Lyme.We live in Sweden.We had 2 go 2 a dr in Germany.My god the only help you have for ur child just couldnt help anymore and that it would be from idiots stopping him oh my god !!!HOW CAN THEY DO THIS TO an ANGEL ???I wish i had the money to help but as it is now i had to sell my car and soon my home to keep get treatments for my own daughter.I see this and i start to cry even if i never met this man this lovely doctor theres no words