When Iris was born in 2011 we say she came out into this world screaming and has not stopped, even at the age of 5. She was always very hard to console, staying up very late into the night often having to sleep with us. She would scream for hours on end, which always took a toll on every aspect of our lives. Out of nowhere she would have episodes of rage, which were very scary, and left us feeling guilty as parents thinking something was wrong with our parenting. We tried every kind of reward system with Iris and every different approach to discipline but nothing seemed to help. Iris always had trouble gaining weight and trouble with constipation and stomach pains. It was not until the fall of 2015 when my mother was diagnosed with Lyme, due to a positive PCR test, that we even thought this insidious bacteria could be the culprit. This led me to do a lot of research on this mysterious disease because the diagnoses shocked our family. Not long after doing some research I discovered that my entire family had been suffering from the ugly effects of Lyme for decades.
Growing up in the country surrounded by deer you would think that Lyme would be the first thing on doctors’ minds when diagnosing, but unfortunately it is the last (if there at all). Now we know you do not even have to be in the countryside to be at risk for Lyme. Small mammals such as squirrels, mice, and rabbits can carry ticks into more urban areas. Also, all it takes is for your great grandmother to get bit by a tick once for it to be in your family’s bloodline. We were blessed to have found LLMDs not too far away from our home to treat us. Confusion filled the first few months as to where to get help, but thankfully my mother had a friend, who had been battling Lyme for a while, and she was able to point us in the right direction. We would have been lost without her guidance. Our primary doctors and infectious disease doctors did not believe my family was sick because the basic ELISA test came back negative. We quickly fell down the controversial rabbit hole surrounding this NOT rare disease, but truly one that is rarely diagnosed.
Iris’s treatment is complicated due to her gastro issues. We are working with an alternative medicine doctor as well as LLMDs, and treating her with natural supplements since she did not respond well to antibiotics. This is very costly since our insurance does not cover anything natural at all. We are also fighting our insurance company to pay for the Cunningham panel test for PANS. Regular chiropractic adjustments seem to help her with the pain and trouble sleeping. Of course this is just another bill in our never-ending pile. When we received the email from LymeLight stating that we were selected for a grant, we felt a huge burden lifted off our shoulders, and we experienced a feeling of security we hadn’t felt in a while.
When I first realized my entire family had Lyme disease I ordered a few books to do my own research. One book was “When your child has Lyme disease, a parent’s survival guide,” by Sandra K Berenbaum, Dorothy Kupcha Leland and Richard I Horowitz MD. In the back of the book it had some resources and LymeLight foundation caught my attention. I thank God he led me to purchasing that book because without it, sadly I do not know if I ever would have even heard of LymeLight due to such lack of knowledge and diagnosing in my area.
There are days when we get to spend time with a sweet, happy, loving daughter. These good days are becoming more frequent than the scary, anxious, anger and pain filled days we were sadly used to having. With this blessing from the LymeLight Foundation I know that soon EVERYDAY I will get to spend time with the happy and sweet girl, my daughter was ALWAYS meant to be. THANK YOU!!!
Iris has made great strides toward healing. Her virus numbers are dropping and essential vitamin levels are going up. We are finding the gut the hardest to repair. It seems most times it is two steps forward and three steps back. But we are slowly making progress. We found creating a toxin free environment is a key to healing from any health issue, so we made huge lifestyle changes. I used to assume anything sold in a store had to be safe because of government regulations, sadly I found that I could not have been more wrong.
We now try to eat organic as much as possible and only use plant based cleaners in our home. We use essential oils for pain management and other issues that arise. Yes, it is a more expensive way of living, but I would rather spend the money now for prevention then have to spend it after someone in my family gets a life threatening diagnoses. I have seen improvements in our immune systems since making the switch. This journey we are on has made us complete believers in holistic/functional medicine, the power of prayer, and the importance of having a relationship with Jesus Christ. We still have a long road to travel, but at least now it does not have to be so lonely. Thank you so much LymeLight Foundation for the gracious hope you give to families. Without the help of this generous foundation healing would not be achievable.