Welcome! We are musicians and artists raising money in the fight against Lyme Disease. Watch videos, listen to music, and learn more about Lyme Disease.
Lyme disease is misunderstood by the government, the general public, and most importantly, the medical community at large. Although great strides in awareness of this infection have been made in recent years due to the efforts of patient advocacy groups, local self-started patient support groups, and some legislators (we applaud Sen. Collins of Maine, Rep. Smith of New Jersey, and others) the dangerous extent of this problem continues to receive scant attention.
Occasionally a major entertainment celebrity becomes infected, creating a temporary news “buzz” for a few days. I recall when my songwriting hero Kris Kristofferson announced his infection and how it greatly altered his life. I think we all thought (to our unfortunate later dismay) that “this will be it – now things will change, and people will wake up”. Well, it did not happen. Recently, Justin Bieber announced his infection with Lyme. It all helps, but until everyone understands how severe this infection can be, the financial burdens it imposes on families, the misunderstanding a chronic Lyme patient (including children) receives we will be forced to do what this website does…
Each day with Lyme disease is a marathon. For most people “waking up” feels good. For many, it is a joyous time, anticipating the new day filled with something new, something exciting planned for that day. There are great morning phrases we all use …”Wake up, you sleepy head …”, “You are missing the best part of the day…”, or “Get up, we’re burning daylight…”. There are wonderful songs like “Oh, What a Beautiful Morning”, and “Here Comes The Sun”, and so many more. When you have LYME disease (a tick-borne bacterial infection) this is the hardest part of the day.
Waking up in the morning with Lyme Disease feels like there are 10 lb. weights on each arm and leg. Your head is throbbing. You can’t think clearly. Your sheets and pillow are damp from night sweats and fevers. If you were lucky – there were no terrible muscle cramps during the last night or even the dreaded neurological seizures. Maybe you were able to have some little sleep (on and off) …maybe …This kind of morning would be bad enough when you are an adult.
“The summer in between my 1st and 2nd-grade year, when I was 6, I was bitten by a tick in Missouri. We did not see the tick and I did not have the “bulls-eye” rash that happens in about 50% of people bitten by Lyme-carrying ticks. Those 50% are very lucky because you go on antibiotics for 30 days and it gets rid of the Lyme disease.
When my 2nd grade year began, I started having body aches, brain fog, headaches, tremors in my right hand, and I started blacking out. I felt horrible and it was very hard to get out of bed. My 2nd grade teacher noticed that something was wrong in October. I think the blackouts scared my teacher and my parents the most, and they all agreed something was wrong with me.
I decided that I need to do something to help find a cure for Lyme so I started my own nonprofit called the LivLyme Foundation. My mission is to raise money to help children that cannot afford their Lyme medicine and to give money for research to find a cure. We have met a lot of families that cannot afford the Lyme drugs and Lyme doctors for their children because most insurance companies will not cover people with Lyme disease. So I would like to help children with Lyme. There is also great research going on to find a cure, and new drugs for Lyme and I think my foundation can make a difference.”
2019 … Now Olivia is the Founder of LivLyme Foundation ( livlymefoundation.org ) helping so many families with children who have LYME. You can read Olivia’s story right now at https://livlymefoundation.org
There are approximately 30,000 cases of Lyme Disease reported to the CDC in the US each year. The number of reported cases has doubled since 1991. Some estimate the actual number infected could be as high as 300,000 per year.
There are more than 500,000 children in North America suffering from Tick-borne diseases like Lyme, Babesia, Bartonella, and Relapsing Fever. Some medical professionals estimate the actual number is much higher. Chronic conditions and long-lasting symptoms can vary, often resulting in misdiagnosis and lack of treatment. These may include malaria-like high fevers, debilitating fatigue, severe joint and muscle pain, recurring headaches, loss of motor function, confusion, seizures, paralysis, organ failure, and cardiac issues. If left untreated … the infections can be fatal. During the COVID – 19 pandemic these children are at even higher risk…
Thank you for reading this far. We are not a technical or medical website. We offer no treatments, nor do we pretend to be a source of expertise about Tick-borne infections. For that, we recommend you visit the websites globallymealliance.org and lymedisease.org. We are about music, songs, music videos, and helping Kids with LYME. We unashamedly, unabashedly, state in our “disclaimer”…WE RAISE MONEY TO HELP CHILDREN WITH LYME DISEASE…
Now, the fun part… Musicians and songwriters who know what it is like… to have Lyme. There are many… Thank you Kris Kristofferson ! and so many others, we will profile you all eventually…Our first is the ground-breaking, out front about Lyme, really human, intensely “fierce” Canadian superstar AVRIL LAVIGNE… thank you for all you do! Thank you for starting your non-profit foundation theavrillavignefoundation.org to help so many children stricken with this infection. We are a new website, just getting started, following in your footsteps, and hope to help carry on the great work. I wish I could write songs like you, but being part of our music community makes my old heart proud…
Sarah Katz is a wonderful writer who can be seen at sarahbeakatz.com. Her story “Lyme Disease – The Other Epidemic No One Is Talking About“, is available to order through her websites.
PLEASE VISIT AVRIL’S MUSIC AT YOUTUBE or simply use your search engine to find her. We recommend all her albums, especially HEAD ABOVE WATER. In the weeks ahead, we will feature her here and on our new music channel MUSICIANS 4 CHILDREN WITH LYME on YOUTUBE.
Our wonderful Webmaster is Robert at https://chicodesigns.com/web-design/ who tirelessly puts up with an old, tech infant, handicapped Lyme patient (I tape pencils to both hands to do computer strokes because my fingers won’t work, but it works just great). PLEASE SUPPORT THE FOUNDATIONS LISTED ON OUR “DONATE” PAGE to help the Kids, and listen to our music… as our library grows.