Lyme Disease
Today’s blog is about my friend Tracey and her sweet daughter Soph who was diagnosed with Lyme Disease one year ago. I wanted to share their story in the hopes that it may help even one other person who has been given just about every diagnosis over the years except the correct one. .
This is what Tracey is sharing with my readers today
How do you reflect on the past year and put it into words? One year ago, Soph was diagnosed with Lyme Disease. Now that we’ve had a year of going in the right direction, I feel like I can openly share this to help others. Prior to that, she was given just about every diagnosis and label there was- OCD, ADHD, ODD, SPD, anxiety disorder, and was about to be screened for autism.
As parents, we felt like we were at the end of our ropes. I had expressed concern for YEARS and never really felt like I was heard. The only offerings were meds or quick dismissals that I was worrying too much. I fought it for a long time, trying absolutely everything else and was pressured and guilt-tripped into “this was the only way” to help her. Now, don’t get me wrong – I am not anti-pharmaceuticals. There is most definitely a time and a place for them. This is simply our journey and I have to share it.
Someone out there could be going through the very same thing and I don’t want anyone else to suffer in silence like we did. There ARE other options, but YOU have to advocate for it. You know your body and you know your child(ren) better than anyone else. When your gut tells you something isn’t right, listen.
This is the result of what the medications did to our girl – this pic on the left. Did any of them help? No and in fact, they made her even worse. What started out as 1 medication that didn’t work, turned into 2, into 3 and so on and so on. Every side effect possible, she had. I was told that wasn’t possible and I was over-exaggerating. No one had ever heard of “that” happening. Well, it did. We lived it. All day, every day. She couldn’t even function as a human, much less as an 8 year-old little girl. She was angry, anxious, lethargic and aggressive. She gained 30 lbs in 3 months. Our hearts broke for her. We didn’t know what to do. I was told to trust the process. I did not.
When I look at this picture on the left, I can’t help but feel an overwhelming sense of guilt, because we are the ones that are supposed to protect our kids. I knew it wasn’t the right thing and I tried to speak up. I was labeled as difficult. “I must not want my child to get better. This is the only way,” I was told.
Then, one day, I started asking questions in a different community. I reached out to someone about integrative medicine. We switched gears. At the time, I didn’t know what that would mean for us, but we decided at this point, we had nothing to lose. It took YEARS for us to get a blood test. We just wanted answers… the root cause, not a bandaid.
Through these extensive blood tests is when we learned the real issue… Lyme Disease with several tick-born co-infections. Why did none of these meds work and made symptoms worse? This is common for those with Lyme Disease. All of the symptoms (diagnoses above) are symptoms of Lyme Disease. We didn’t know what we didn’t know, but finding a community that does is crucial. Now, look at the pic on right. This is her, now. Happy, healthier than ever, thriving.
Her journey isn’t over as far as healing; this is only beginning! This is something she will live with for the rest of her life, but you better believe she is her own advocate now. She knows how to listen to her body and the cues it sends her. She still has bad days, but we instantly know what to do now that we have proper support. We now have the right tools in the tool box. Thanks to our incredible community with Carolina Holistic Medicine, Move Mountains Chriopractic and countless others, we are well on our way. There is hope and there IS help. Don’t ever stop fighting for yourself and those you love 
Thanks for taking the time to read this. If anyone ever needs to talk or has questions, I can only speak from our experience, but you are not alone. I don’t want a pat on the back, I want a damn cure.
Tracey also shared this information
A new documentary that is coming soon about Lyme Disease. “One of the most controversial diseases of our time,” yet more cases than breast cancer and HIV, COMBINED. I will never stop fighting, ever.
Lymedisease.org
You can watch the trailer for this forthcoming Lyme documentary.
Thank you for taking time to read my blog about Lyme Disease. I have known Tracey for years, I remember when Soph was born. I know Tracey will not give up her fight, not just for her daughter, but for others that may feel they are at the end of their ropes. Advocacy is defined as any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on. This definitely describes Tracey, a loving mom and Soph, her beautiful daughter.
Thank you Tracey and Soph for sharing your story in the hopes it will help others learn more about Lyme Disease.
What a moving story. I don’t know very much about Lyme Disease—we really didn’t spend that much time on it in medical school back during my time. I am glad she is doing better.
I never realized the extend of it until I heard about Soph. So sad but so glad her mom didn’t give up Dominique.
It’s so difficult to stand up against conventional advice. Tracey, Soph is fortunate to have a mother who is brave enough to keep searching for answers. Thank you for sharing this, Martha. It’s a good reminder for all of us to listen to our bodies first.
Thanks Victoria, I’ll be sure to show your comment to Tracey and Soph. They both will continue to search for answes and won’t stop until they get them.
So sad to hear.
Both Soph and her mom are fighters Roy, they will not quite.
I too have been diagnosed with sensory processing disorder, ADHD, auditory processing disorder, and hyperacusis. Those diagnoses came to me after the age of 35. I really do have sensory processing disorder. Lyme disease wouldn’t stay so stable for so long. In kids, though, it would be very important to rule out Lyme disease because of all of the complications that it causes.
I never know the extend of damage Lyme disease could cause Alice. I also didn’t know about your diagnoses. Hugs and love going your way from Lia and me.
Thank you Martha and thank you Tracey for sharing your story. Here is wishing Soph a speedy recovery to being all she can be, and to a cure as well. I knew of a colleague who went through a tough time as well with Lyme disease and I know it was tough on her and her husband…
Thank you Vidya, I’ll be sure to show Tracey your comment. Both Tracey and Soph are fighters and they won’t give up!
Martha, it’s often a hard condition to diagnose, b/c people don’t even think of Lyme disease. There is a blood test for the bacterium that causes it and which is carried by ticks. I am so sorry your friend’s daughter suffered under the wrong diagnoses.
I’ve known about Lyme disease but never realized the magnitude of the symptoms! Thanks for visiting Kebba.
Hugs to Tracey and Soph. And to you, too, Martha, for the support. I first heard of this disease from my children who were discussing how fatal it is.
Praying that everything will be ok for Soph and her family.
Thank you so much Bing, I never realized the extend of damage Lyme disease could cause.
What an ordeal! Reading about “the medical system” makes me angry. I understand these doctors are under a lot of pressure time and money-wise, but heck, they took an oath to help people, and listening to them and taking them seriously should still be a priority.
So glad Tracey found the support she deserved for Sophie. All the very best on your journey! ♥
Thanks Tamara, I know many doctors won’t recommend chiroprators but if they come to their wits end, they should take steps to see what else might help.
Supposedly if the right antibiotic is given in time, it goes away. If not? My Significant Other’s been living with “chronic” Lyme Disease for the past ten years. Gets better, gets worse again. Has had more “mini-strokes” than you ever would have thought a person can survive. Still walks (with a limp) and talks (sometimes with a slur). I don’t know what to believe about this disease, though I do know that it’s aggravated significantly by glyphosate exposure, slightly by chill or other stress factors. Beware the dreaded Deer Tick.
I’m so sorry to hear about your significant other Priscilla. I’ve known about Lyme disease but never knew to the extent of it. Thank you so much for the added information, I’ll pass this on to Tracey.
Supposedly if the right antibiotic is given in time, it goes away. If not? My Significant Other’s been living with “chronic” Lyme Disease for the past ten years. Gets better, gets worse again. Has had more “mini-strokes” than you ever would have thought a person can survive. Still walks (with a limp) and talks (sometimes with a slur). I don’t know what to believe about this disease, though I do know that it’s aggravated significantly by glyphosate exposure, slightly by chill or other stress factors. Beware the dreaded Deer Tick.
Interesting blog.
Thanks for reading it Amanda!