Kimberly G., mother of Cole, Gigi & Bella
Do you remember being bitten by a tick? If so, do you recall where?
I personally know I was bit by a tick as a child. I do not ever remember having a bull's eye rash. My 3 children were all bit as children multiple times and never had a bull's eye rash either.
How long did it take you to get a diagnosis?
I was not properly diagnosed until September 2016 after moving from the east coast to Colorado to see a LLMD for my 3 children who had all been diagnosed months apart earlier that year. My severe symptoms began around 1998 (20 years old). My son fell ill at 13 and it took 14 months for him to get a proper diagnosis. My youngest was bit by a tick 6 months after my son got very sick. At that point, she had a large bull's eye rash all around her chest. She got a diagnosis immediately. Soon after my middle daughter came down with severe symptoms and because we were already seeing a specialist in CT who was a LLMD she was diagnosed immediately.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw over 30 doctors and specialists over the course of 10 years. I would literally walk into a neurologist with my symptoms and visible facial palsy and would be told, “It was just stress,” or, It was cute that my eye drooped.” I knew something was wrong and I would not just take the blanket prescriptions that they were giving me for something they could name. I would go from doctor to doctor hoping that at the next appointment someone would help me. I saw neurologists, rheumatologists, orthopedics, OBGYN’s, hematologists and about 5 different primary care doctors.
Over the course of 14 months, my son saw over 25 doctors not including the teams of doctors during hospital or ER visits. He saw 4 neurologists and 1 neurosurgeon, 2 different teams of hematologists, 2 infectious disease doctors, 6 urgent care doctors, two overnight hospital stays and about 6 ER visits.
Anything else you would like to share about trying to find a diagnosis:
Both my son and I looked for answers at notable medical establishments. We were both told that these establishments had the most advanced testing for Lyme Disease. They lied, and in doing so, prolonged our search for answers making treatment that more difficult.
How long have you been treating Lyme for and what treatments have you tried?
My family and I have actively been treating Lyme and multiple coinfections since January of 2016. After working with a Lyme doctor in CT for 7 months, we moved to Colorado to seek different treatment after having no positive results. Currently we travel out of state to doctors for treatment with a maintenance plan in Colorado. We have done the following treatments: antibiotics, anti-parasitics, IV silver, hyperbaric chamber, ozone, 10-pass ozone, Myer’s cocktails, IV Rocephin, stem cells, herbs, supplements, red light therapy, energy work and frequency therapy. I’m sure I’ve missed a few.
List up to 5 of your biggest (past or current) symptoms:
My 5 biggest symptoms over the past 15 years have been mostly neurological, including Bell's palsy, trigeminal neuralgia, body numbness and weakness, cognitive issues, and body pain.
My son basically lost his short-term memory, ability to learn new information, extreme fatigue, POTS syndrome and sleep issues. My middle daughter was the one that had severe body pain as her first symptom, then came memory and learning problems, exhaustion, and sleep issues. My youngest (who was immediately treating with CDC-recommended antibiotics and then treated for two additional months of antibiotics which did not work) experienced extreme fatigue followed by learning issues, POTS syndrome, migraines and sleep issues.
What (if anything) has made the biggest difference for you so far?
We started working with doctors who practice Applied Kinesiology in a very specific way over the last year. We have made significant improvement by seeing them and adapting their principals into our lives. We also see energy work practitioners that have helped our minds and stress levels as well as the trauma that Lyme disease has brought into our lives.
What is the biggest way that Lyme has affected your life?
Lyme disease stole my children’s childhood. Lyme disease stole joy from being a mother. Lyme disease broke me into pieces as I watched my children suffer in ways that I cannot fully explain. Lyme disease tried to ruin my faith in humanity, as many people do not remain present in your life along this journey. Lyme disease made me sick when my children were just babies, and no one believed me. Then it came back and ripped our life up from under our feet. Lyme disease made me find strength in ways I did not know were possible. It introduced me to what feels like an underground society of people that mirror your pain and suffering, but support you as if you’ve known each other for years. Lyme disease forced me to heal pieces of myself that I ignored and taught me I cannot control everything around me.
Lyme disease also made me realize all the life expectations I had implanted in our family. I expected to watch my son graduate 8th grade. I expected to drop him off at his first day of high school. I expected to worry while my daughters entered middle school. I expected to teach him how to drive, give him pep talks for asking a girl out on a date. I expected to watch my daughters flourish in school, in the arts and on the stage. I expected that they would be healthy children. I expected all the hard-earned money my husband worked for would go towards college and our future. I expected I would open a bigger and better boxing gym with my brother. I expected to be there with the professional athlete I had helped manage, train and fed for 3 years when she fought her big fight on TV. I expected that I would suffer but that my kids would live and it would make everything ok. Lyme disease made me see all my expectations and have to grieve every single one of them.
What do you wish people knew about Lyme Disease?
I wish doctors would know that if the medical community acknowledged the severity of Lyme disease and coinfections, I may have been able to help my children. If I was properly diagnosed, after the birth of my youngest, they would not be suffering right now. I would like doctors to know that just because I was a young mother of three did not mean that my symptoms were “from stress” or “psychological." I would like doctors to know when they could not figure out what was wrong with my son - Blaming his memory loss, neutropenia, weight loss and migraines on “depression” was completely negligent.
I would also like LLMDs to think about the profit that is being made off of very sick Lyme patients. I feel that the pricing to see Lyme doctors is shameful and unnecessarily taking advantage of the fact most of the time this doctor is the patient's last attempt or only option.
I would like the public to try and comprehend the complexities of Lyme disease...To become informed before judging. To understand that not one of us wants to be sick - That the importance of supporting your friend, family member or a random person with Lyme is more impactful than you could ever imagine. Lyme disease is not like other illness. There is no magic pill and you are all better. Most of the time it is life-long maintenance and attention in order to remain in remission for those who are lucky enough to experience it. I would like the public to know that my family has spent over $300,000 out-of-pocket on fighting for our children’s health back. We have had to fundraise over 6 times in order to seek treatment.
To my family and friends who have stayed in our lives - thank you. To the strangers that have become like family in the Lyme community - thank you. To every person who has ever helped us, my heart will forever be filled with gratitude. Please remember to be patient and realize the toll that this disease has taken on not only myself, but the children. Remember how much I wish I could make this all go away and bring news of joy that this is over! That is not the case, nor is it realistic. The greatest thing our friends and family can do is to just be there and love us. Lyme disease becomes lonely and exhausting - Fearing that the ones you love most do not understand is just too much.
To find out more about Kimberly’s journey and how she is spreading awareness, you may go to www.lifenlyme.com.