Those of us who have dealt with Lyme can understand the feeling of being “alone” in the experience. We recently learned that my 3 year old daughter is sharing the experience with me. And now, an explanation finally exists for why Eliah has had various sensory, emotional and physical challenges. Most parents have to manage their child’s sensory processing disorders without explanation of the “why” it happened or “what” to do to about it. With the understanding I now have about Lyme disease being a factor in Eliah’s behavior, I now have some peace about the “why”. And with further knowledge comes further understanding and ability to create change. So, yes she has Lyme, which is a bummer. However, I am so grateful to have more information to be able to really help her overcome and thrive in ways she hasn’t been able. The good news is that all of James’s (my 1 year old) tests were negative (we had all of their testing done thru Igenix as well). It’s interesting that somehow I passed the bacteria to Eliah in utero or through breast milk but didn’t pass it to James. However I’ve also been told that the negative test is not always accurate so we will continue to watch him and see if he shows signs of Lyme. For now I’ll celebrate that he seems to be okay.
For all of Eliah’s life I have felt that I’ve been in a “battle” with her. She has been in an almost constant state of feeling unregulated with the resulting effect on me of feeling overwhelmed and overstimulated. Lyme disease has manifested itself with opposing needs in each of us. I crave dark, quiet solitude. She craves movement, stimulation, and energy! It’s been a yin and yang relationship, filled with unmet needs and frustration. I just longed for a baby I could peacefully hold, nurse, and snuggle. Eliah craved a mom who was active, bouncy, and rapidly changing activities to prevent her boredom all day long. Some days I thought I was going to have my brain explode from the screaming and over-stimuation surrounding me. I’m sure she felt the same by not having enough input. I’ve experienced the dreadful “mother’s guilt” about not accepting her nature and her needs, not being able to be active enough for her, not being creative enough to give her a new exciting activity every five minutes, not being “enough” for her period. And I’m sure she’s sensed the disconnect and sadness from me as I retreat in my dark, quiet space as soon as my husband returns home after work.
Recently a dear friend of mine helped me see the battle was never Eliah and I against each other, but rather we have actually been “allies” fighting Lyme disease. This truth brought to mind an image of my daughter and I, fighting a “battle” together against the effects of Lyme. She’s fighting one part of the battle and I, the other. We really are going through this together in order to help each other to stay strong and determined. Now I see a different story unfold: When I picture the days I was so tired that I wanted to melt away in my room by myself, my teammate in battle, Eliah, entered my room saying “Mama get up, don’t quit! Lets play and show those bacteria we are stronger! Keep moving Mom, you can do it! If you play with me your heart will feel happy and that will help your body fight. And when we play that helps my body feel happy which will help me fight too. We stay strong by continuing to live life, even on the hard days!”
The whole time it was her giving me the will to stay active, to motivate me to discover a diet that helped both of our guts heal, the resolve to go to multiple doctors and to figure out how I can get better so I have the strength to play with her. It was her intensity that brought two choices onto my path, give up and let life swallow me whole, or keep looking, praying, etc until we found a solution to help both her and I feel more balanced and healthy. And who would believe it? We had the same culprit attacking our bodies and minds all along. If that doesn’t create a mother-daughter bond I don’t know what will.
I just want to say that I’m so grateful to have finally gotten to the point where I see Eliah’s challenges actually being the catalyst that drove me to find the truth of our health issues and the resolve to change how I respond to stress. Now, I see her vibrant, determined spirit to be the fire that will keep me going no matter how bad of a day I’m having. I feel on some level she choose to go through this with me, because she loves me so much that she was willing to allow her tender young body go through illness to help me overcome mine. She was willing to sacrifice part of herself for me. I hope I can love her back in the same capacity throughout her life.
As for treatment of children with chronic Lyme disease, I have no idea what her treatment will be yet. I do know that she will recover, she is a truth seeker and has a heart of fire that will help her body and mind return to health. Also, we all know mother’s intuition is best and I’m hoping the spirit will guide me with her recovery as much as I’m being guided with mine. I plan on using my doTERRA essential oils to some degree- as they have been an amazing component in my healing process. The main thing I will “treat” her with is by helping her recognize that it’s not Lyme that we are actually in battle with- it’s the false beliefs and poor thought choices that have caused my body and my DNA chain to continue to be susceptible to be a host for disease. I know the most dramatic change for me has come by not needing to fight the “it” that plagues me, but by empowering myself to change the thoughts and actions that have not served me in the past. I know that some of my poor reactions to stress have been modeled to and passed to my daughter. And I know that as I teach her a new way to react to life, her own inner vitality will magnify, making it difficult for her amazing body to be a “host” for disease. Please stay tuned to watch our miracles unfold.
Update June 2013: We did 2 months of oral antibiotics with Eliah, until she developed liver pain. We have not done any lyme treatment since except diet and epigenetic influences.
living with spirit 
Ah, I loved this. So beautifully written like always. I’m so grateful to be a part of this journey with you and our little mini-me’s. I’m so glad you are writing all these moments down, this is your best self and its so beautiful to watch it unfold. Those last three pics of you two are absolutely gorgeous. love you
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Hugs to you…I’m glad you have a better idea of Eli’s situation, but I’m sorry that you have to deal with another diagnosis. You are so strong and such a great example of how to face challenges. And I agree…these pictures/memories are precious!
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I would love to hear how your Lyme healing process is going since writing this post. I was diagnosed with SIBO around the same time you were diagnosed with Lyme. My cousin was recently diagnosed with Chronic Lyme and is really urging me to get evaluated. I also have problems with sulfur foods and have even tried following an auto-immune paleo / low FODMAP / low sulfur diet. I also attended Pacific University (for my undergrad). Small world!
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I am actually doing really well. I have been hesitant about posting b/c my story is so wierd and miraculous that I have wanted to make sure things keep going before I tell the world. But basically my body had a huge crash from treating Lyme, it was killing me to try to kill it. And the fear was the worst. I also have SIBO. But basically I decided to stop worrying about Lyme, SIBO, etc and just work on all of the old emotional issues that give me fear and make me feel powerless to heal unless someone helps me fix all of the “it’s” in my health issues. So the long story short is I have been treating myself energetically, spiritually, emotionally. I am loving the Lyme to death, literally. And in the process loving myself, releasing fear (it’s a long process of layers) and learning to believe that the only thing I need to heal is deep, deep self love. Disease cannot coexist with intense faith and love. It just can’t. I hope to someday complete my recovery and write about this. LYme is an emotional/energetic illness as much as a physical issue. I think the same thing of SIBO. I watch my diet, I take care of my body. I don’t eat a ton of high FODMAP or high sulfur foods, but I’m learning to let myself believe my body has a perfect blueprint for health and can heal.
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Cathleen,
Thank you for your thoughtful reply. Perhaps I need to focus on the emotional component of my health as well. I have certainly seen a lot of improvement through diet, but the residual health issues make my wonder whether there is more to my puzzle.
I wish you the best with your continued healing!
Riley
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The immune system is the thing you want to focus on the most, not LYme, sibo, etc. And it is extensively known that our immune system is most influenced by emotion, stress,etc. It’s the underlying anxiety, anger, fear, dread, etc that influences the microbes we allow to live in our body. SIBO is definitely related to stress. And then it means that we have to be careful with our diet to help our bodies manage everything. But the diet is just a treatment for a body that has a weakened immune system, there is a root cause that’s deeper than the physical. I truly believe, with all of my research, that most all gut problems/lyme disease, etc have an emotional/energetic foundational component. In the meantime it is important to manage your symptoms with diet, supplements, etc until you can rid the body of the trauma that caused it to break down in the first place. Put your efforts into emotionally being free of fear and anxiety and I guarantee you will start to heal.
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wow!!!!! Your story is incredibly inspiring. I am in the beginning stages of healing my family…but I am so overwhelmed with this diet! Please, please, please do you have any of your snacks made yet?
We are on a low sulfur, no nightshade, no grains, no diary and the list goes on diet. I am desperate for some help and support. Everyone around us thinks we are crazy lol. But we recently had my husband and son tested for their genetics, food allergies, as well as other things. It has literally been the biggest blessing of our life! Thank you so much for sharing your journey.
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