May is Lyme Disease Awareness Month. I have been wanting to share my story, it was part of the reason that I started this blog. I love that people around the world are sounding the horn for Lyme Disease. How fun is this #lymediseasechallenge ? I wanted to participate and help bring awareness. Garrett was true to his personality and couldn’t be serious. He always makes me laugh and this was no exception. We had fun taking a bite out of Lyme. Thanks to my niece for being our camera crew.There are so many ways that I could start this story. I could share a chronological string of events and talk about the numerous treatments that we have tried, I could share the exhaustive list of symptoms, but what I want to shout from the roof tops is the emotional pain that comes from this disease.
It was the summer of 2010 and we were visiting friends. The kids were in the front yard in their swim trunks with grass stained knees and a well worn slip n slide. My 6 yr old son Garrett was having so much fun when he suddenly clenched his leg. He screamed in pain and continued to cry all night long. This episode was diagnosed as “toxic synovitis.”
When he was struck by another episode 6 months later the HMO doctors did the tests that they knew of and basically shrugged their shoulders. They couldn’t find anything that could explain why he was in such intense pain that at times he couldn’t walk. Little did I know that this was the beginning of our life long battle with Chronic Late Stage Lyme Disease.
As I watched him get sicker I could not take “no answer” as an answer, so I took matters into my own hands and I found a woman 2 hours away who specialized in natural medicine. She recognized the symptoms right away, but it wouldn’t be for many more months and thousands of dollars in blood tests that we would have a positive diagnosis.
One day during this process I sent him to school and wasn’t thinking that there could be a substitute teacher who wasn’t aware of his problem. He wasn’t hurting when I dropped him off but a couple hours later I got a call from the nurse that he needed to go home. By the time I got there to pick him up he was sobbing and I had to carry him to the car. My heart sank when he told me that he had to pull himself along the railing to get to the nurses office because the substitute didn’t believe him that his legs were hurting and that he needed to go to the nurse. She finally let him go when he wouldn’t stop crying, but she didn’t help him get there. I felt awful, and angry!!! He didn’t make it back to school after that and did a home school program for sick kids the next year.
When the Lyme Literate doctor, as they are called, gave us the diagnosis he said that Lyme is the most complicated disease that he has ever encountered. This is when it sank in for my husband. We took him to the beach after the appointment and just absorbed the news while he chased the sea gulls and dipped his toes in the water.
The more I researched the disease, the more scared I became. There is not a known cure. At the same time it is not something that you can just accept and learn to deal with the symptoms. You have to treat it and continually adjust your diet and supplements just to not end up in a wheel chair. I am thankful that I got the answers that I did because a wheel chair was where he was headed. He simultaneously took 3 different and powerful antibiotics for 9 months. They didn’t work, neither did the herbal protocol I tried for the next 9 months.
The mystery was how Garrett contracted the disease. Many of his symptoms started at birth (that is a story all on it’s own) and so they started questioning my health. I was never a very healthy person, I was diagnosed with neuropathy at the age of 2 but I started to out grow it in my late teens. I would always just say that I had a bad back or feet problems and I was just a tired person. But I was never as sick as Garrett.
So I spent the 600 dollars and got tested. I sat on pins and needles as I waited for 2 and a half months for the results.
I was walking through World Market when I received the phone call with the test results. My results were positive. What did that mean? It meant that the mystery was solved, I passed the bacteria to Garrett during pregnancy.
I honestly started to shake and cry, I still remember the basket that I was looking at. I gave my son this horrible disease. I was the cause of his pain and suffering. It makes my eyes well up with tears as I write it. I always took the high road. I didn’t get an epidural with my 2 babies because they could get some of the drugs in their system. I didn’t touch caffeine or alcohol. I breastfed them as long as possible. They didn’t even have a pacifier. To find out that despite all of that, I was poisoning him with a bacteria that would steal his quality of life. It was not only in utero but with every drop of my milk that I continued to fill his little system with one of the most evasive bacterias known to medicine. That has to be one of the worst things that I had ever felt. My mind knew that it wasn’t my fault but my heart broke because of it.
We always try to keep things fun and light. We took 5 trips to San Francisco (7 hrs one way) to see a specialist. We will always have good memories of our weekends spent seeing the sights. This was taken about three years ago, he was 9.
You might want to know how things have progressed from Garrett’s diagnosis 5 years ago this month. I wish that I could say all better, but I can’t. 3 months ago he had a 2 week episode where he couldn’t walk again. We are still trying to find new treatments. There are good weeks and bad weeks.
We function pretty well most of the time. Garrett loves sports and I stay busy raising a family with health problems and food allergies. Some days are just about doing the basics. Some days I can fight back and prepare healing foods and research new prospects. There are times when I can do the things that once defined me, like garden, exercise and projects around the house.
Then there are times when I have to sleep the day away or when the pain makes it hard to do anything.
What never gets easier is feeling all on my own. The mainstream medical doctors do not accept our diagnosis because we didn’t use their labs and they are ignorant of the prevalence of this formidable disease. When I take Garrett to the doctor for routine things they treat me like a gullible, uneducated hypochondriac that has made up a disease for my kid that doesn’t look sick and whose blood work is all normal. The frustrating thing is that they have no other answers. During this last attack they referred Garrett to the psychiatrist.
Teachers, friends and even family don’t always understand what we go through. They see it as it appears on the surface and that is deceiving. There are some that think we don’t push ourselves or that I am too easy on Garrett when I let him stay home from school. What they don’t realize is that everyday is a struggle and we don’t have days that are easy. When we shut down it is because we actually cannot push anymore.
There are so many that are much worse off than we are. I am thankful when I can get out of bed every day. I am thankful for the support of my husband and loving family who I would be lost without.
I am also thankful for laughter and good times.
With that said enjoy our out take reel…..
Thank you for reading my Reader’s Digest version of our Lyme Story.