My battle with Lyme Disease

Lyme -Disease-StoryMay 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.Lyme-disease-storyThere 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.

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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.

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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. IMG_0026

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.

Lyme-disease-storyThen 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…..

 

 

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IMG_1888removing candle waxThank you for reading my Reader’s Digest version of our Lyme Story.

 

10 thoughts on “My battle with Lyme Disease

  1. Jessica!! I am so sorry you and your son have had to endure this chronic illness. We have a dear friend with “advanced” Lyme and we know how very difficult it is, particularly because there are different variations of it, and so many different symptoms and experimental treatments that never really end the suffering. I did not know that it could be passed from mother to child and I am especially sorry for the anguish you must have gone through after learning that even though you know in your heart that you did everything to ensure your babies would be healthy and would do ANYTHING for that to be different…..it’s so much like high cholesterol that I passed on to my children (diagnosed at 4 and 7, extremely high) or other genetic disorders passed on to the next generation. YOUR research, your raising of awareness, your son’s sharing of what his illness looks like, these all are and WILL make such a difference in the treatment and eventual cure for this terrible disease. I wish you and Garrett good health, major advancements in the research of this disease, and continued good humor that you are passing on to your son!! Fist pump to an amazing mom.

    1. Lisa!! You have melted my heart with your comment! I am truly touched. You know the pain of passing on an illness to your children, I wish that you didn’t!!! It is a horrible realization. It’s not our faults but it feels like it is! One good thing that comes from it is that we truly know what they are experiencing. We can be a mother in the truest sense of the word…a nurturer, a comforter, a friend, a listener and a motivator to keep pushing and be all they can be!!! Strong but loving mothers are the best!! That’s my goal everyday. To be a soft place to land but not so soft that they don’t get back up! Thank you for the support and a fist bump right back to you!!!!

  2. Oh my gosh I am so sorry to read this! I watched a documentary about Lyme Disease on my quest to find out what’s wrong with me. I was diagnosed with Fibromyalgia and handed anti depressants (grrr) and got a Lyme test but not the right one because mainstream medicine is uneducated and they think it only happens on the east coast. I’m the end I found I’m very low in B12 but not low enough for treatment. Thanks to a great FB group I’m treating myself with injections and feeling loads better.

    But back to you and your son…you are wonderful parents to push and spend the money to find the answers to help him. I’m sorry you also are sick with it, dragging yourself through the day and still caring for others is so difficult.

    Praying for your family, that there will be a reliable treatment very soon!

    Toni

    1. This was such a kind comment Toni!! I can’t tell you how much I appreciate that you took the time to write it!! I’m so sorry that you have experienced the sting of hard to diagnose illness and the frustration that comes with it!! It’s wonderful that you found a little support and relief!!! Thank you again for your kind words!

  3. My heart goes out to you. I’m so glad you are sharing your story – it will no doubt raise awareness and inspire others – sending you positive thoughts and prayers for everything you do – you are one amazing mama!

  4. Beautifully said Jess! So sorry for the daily struggle but u guys are fighters n have such a wonderful hope…thankfully….keep hanging in there!
    Love u so much n wish I was closer to help ~ but know you are always in my thoughts n prayers!

  5. Thank you for sharing your story! I was a crying mess after reading it but glad to have gotten some insight. You ended on a positive note, but your struggle goes on, so I hope you will find comfort in knowing our hearts are with you!

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