Charleigh’s Lyme Story
Charleigh was diagnosed with Lyme disease, Bartonella, and FL1953. She is only 14 years old. Her mom, Lori, shared with us Charleigh’s Lyme story.
“My daughter, Charleigh, has always been a beautiful intelligent girl with the talent and drive needed to make it to the big time. She wants to be a star. College in NYC and then straight to Broadway. She sings, acts, makes straight A’s in an advanced program, love to spend time with her friends and is the life of the party. That is, she was.
Don’t get me wrong, she is still absolutely beautiful, but now she can’t do much but move from one bed to the next and shed tears of helplessness due to this intolerable disease. My fourteen year old daughter has chronic lyme, bartonella and FL1953. She has missed out on starting high school this year because she can no longer make it through the day without debilitating pain. She lives in a constant state of panic and doom due to the neurological part of this disease and can no longer face being alone for even short periods of time because of the fear this disease has put into her mind. She hears voices, hallucinates and cyclically vomits throughout the day. She no longer wishes to text with her friends because she feels guilty about not being able to be a good friend to them any longer. Many others have shown their true colors and abandoned her completely.
As her mother, I am no longer able to work. I have to be at her beck and call around the clock. We are the best of friends now and my heart breaks because I cannot just fix this for her. I have to watch her suffer twenty four hours a day. There is very little sleep and when it comes it’s made of nightmares. This disease has affected every aspect of our lives.”
Lori also told us about how the diagnosis was given, and the hardships they went through just to get properly diagnosed.
“The pain began in her abdomen area and branched out to her entire body within a short time span. This is why we got medical attention. We were shuffled from pediatrician to rheumatologist to neurologist to GI doctor over the past year. She was diagnosed with fibromyalgia and abdominal migraines and told to make sure to exercise. For a body at rest, stays at rest. Meanwhile she hurt more and more. She lost her gall bladder this past year. It had zero function. I snuck a peek at her file while she was being entered into the system. I happened to see her lyme test. Even though it was negative by CDC standards, it showed me that spirocetes were in her system. Infectious Disease Center of New Orleans said absolutely not, she does not have lyme. Luckily, I pushed for more info and went with my intuition.
We found a LLMD in Florida, about nineteen hours from our home and hopped a plane. Her labs were sent to IgeneX and Fry. This time with no doubt. Seven strains were reactive, even by CDC standards. We have now started treatment. Of course, none of it is covered by insurance.”
Lori wanted to share with readers that CBD oil and detox baths have really helped Charleigh. She hopes that this info can also be helpful to someone else because lyme and chronic lyme disease aren’t frequently talked about and are often overlooked and misdiagnosed. She believes, “We must rally for it’s victims.” Though the journey has been hard for Lori and Charleigh with financial burdens and daily pain, they know they have a community of support when they need it.
“This is why we have reached out through GiveForward. So far the community has been amazing. Our family and friends have rallied around us.”
“A friend of ours has a son in the Navy. He is in Virginia. He was bit by a tic two weeks ago, but blew it off. Because of Charleigh’s story, his mother insisted he go straight to the doctor. Two days ago, he tested positive for lyme.
If it were not for Charleigh, they would never have given it a second thought and his future may have played out as Charleigh’s is playing out right now. Since he caught it immediately, he will be treated for two weeks and be fine. Charleigh saved a life. My baby girl… My hero.
Charleigh’s healing journey has just begun and it will be a long one. But she is a fighter.”