The Thief

dr.candcam

Lyme is a thief. It takes what it wants. It steals, pillages and wrecks lives. I have stood and watched helplessly as it has slowly eaten away at everything I love.

Lyme is: A destroyer. A monster. A bully. It is, quite literally  – a parasite. It is, and always has been, a thief – of health, life, time, joy, childhood, experiences, jobs, love, talents, memories, happiness, friends, faith, family, homes…the list is endless.

The thief comes in and breaks down all that is good. He invades your space and makes you someone you are not. He makes himself comfy in your healthy body and quickly begins turning it into a toxic, bacterial wasteland that creeps inside organs, joints and even the brain, turning everything inside out and upside down.

Pain, confusion, fatigue, insomnia, memory loss, anxiety, panic attacks, rage episodes, tremors, paralysis, nerve damage, brain damage, speech problems, arthritis, tinnitus, migraines, eye pain, facial tics, breathing problems, heart murmurs, palpitations, muscle twitching, and muscle weakness are among the list of the many symptoms that Lyme patients endure. This is only a fraction of the symptoms. On average most patients have at least 20+ symptoms and they are usually going on at the same time or they migrate on an ongoing basis.

It is simply not living.

In the end, Lyme does what it pleases, regardless of how hard we fight back. And all this…even to a child.

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My daughter is only 8 years old. Eight. This thief has stolen her ability for dance and cartwheels and playing pretend. But not her love for it…she just can’t do what she loves most of the time. She had to quit dance this year, her favorite thing to do. She just couldn’t keep up anymore. That is the purest form of torture and the worst part of this disease. It takes away your abilities and leaves you wanting to live. You still love what you love, you just can’t do it anymore. She is very smart and has never had problems in school, but she is struggling with foggy thinking and falling asleep in class. It has stolen much of her fun-loving personality and replaced it with moments of an anxious, angry, and scared little girl that I don’t recognize. It has changed her from a vivacious, energetic, happy child to a weakened, fatigued one who is consistently in pain, with chronic infections, swollen lymph nodes, fevers, stomach aches and an excessive need to sleep but once she falls asleep she wakes up throughout the night. She is always complaining of being tired.

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I know the burden she carries all too well. There is an understanding, a silent mutual agreement. We do not need words. She knows that I know this path better than anyone else. When she is sick, I see the pain in her eyes. She doesn’t need to explain. Her body requires rest. I have been there and I feel her pain. She simply can’t keep going. She can’t explain why, but her body just won’t move or do the things she is asking of it. I get it, completely.

Last month, I noticed a small twitch on her face. Her eyes would squeeze tight over and over again. Her face tensed up. At first, I thought it was the light, maybe she was squinting to see something. But then I saw it again. And the next day. I hoped it was a problem with her eyes, so I took her to  get her eyes tested but everything seemed normal. I stumbled on an article about congenital Lyme and the patient was a child who had facial tics. It hit me that this was what she was experiencing. I was seeing it, but not seeing it. This new annoyance was yet another symptom of neurological Lyme that was rearing it’s ugly head in my child’s life and I missed it.

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She can’t control it. She doesn’t even realize she’s doing it. After our doctor confirmed that it was a neurological symptom of Lyme, I explained to her what was going on in her body and why she was having this strange thing happen to her, but she seemed to already have known. I hate it for her. I know the neurological signs mean we have to be more aggressive with treatment. Lack of treatment could lead to severe symptoms down the road.

I hear crying and screaming and suddenly realize it is my own voice. I don’t recognize it tonight. This is not right. My baby should be doing cartwheels! I want her to feel better and not just for a few days a month, or a few days but all the time! I look over at her. She is so pale and there are huge, dark circles under her eyes. It is frightening to think what lies beneath that fragile layer of skin. She is breathtakingly beautiful, but the beauty is covered with a thin sheet of sickness that is palpable. I can see and feel it all over her. Her body is wrecked with this wretched disease. I imagine the bacteria multiplying faster than we can kill it. I wonder what kind of long term damage it may be doing. Every time she complains of muscle soreness and joint pain, I think of the lack of a cure for chronic tick-borne diseases and how research is just beginning for new treatment options. How long she will suffer? How many more dreaded days and sleepless nights will she lie in pain with me holding her tiny body close to mine? I wonder if the disease will get worse as she gets older? Is anything we are doing going to help? Are we making the right decisions for treatment?
There are too many questions and not nearly enough answers.

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New treatment protocol

What I know is that my daughter is chronically ill. It is hard on her and it is hard on our entire family. We are exhausted. Every day is a battle. Emotionally and physically. She can’t sleep, hates taking baths and brushing her teeth because everything is an assault on her senses. She fights us at every turn but she doesn’t even realize it.

She needs to be better. I want her doing cartwheels and hand stands in Target again. I want to see her eyes light up the way they used to. I want to watch her dance her heart out without falling, hurting or getting fatigued. I want her to sleep through the night and hold my hand for fun things, not from being scared or because she relates to my pain. 

I want to see her doing what she loves to do, unlimited and free, with a body that works the way a healthy child’s body is supposed to work.

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Daily, I trudge through stigma’s and backward glances in waiting rooms. I correct wrong information at every step, flip through millions of medical journals, articles and files, fill out all the paperwork (and more paperwork.) I have researched every tick-borne related case I can get my hands on. I read and read… and read some more. We find answers for me, which means more answers for her. Waiting rooms become our second home. Co-pays and mounting medical bills are the norm these days. Every extra dollar goes to pay for the specialists, infectious disease doctors, internists and specialists for the specialists. We find answers to our questions but some answers only lead to more questions. There are protocols and treatment plans, natural remedies, homeopathic treatments, medicine, and more medicine. Finally, a doctor who cares and who is helping both of us. I pray that my daughter is on the road to recovery but every day we learn more and keep fighting.

All I know for sure is that Lyme is a thief. Lyme is a bastard. Lyme steals life. It has stolen far too much from my life, and I will not let it steal my daughters joy, too.

I know God works all things together for good. I know He does. I know miracles happen every day. I know He can heal. I trust He can and I believe He could heal us both completely. I know all these good things, believe me… I’ve prayed them or cried them in the dark when I didn’t know if I would make it through the night. But miracles don’t always happen and things don’t work out how we think they should. Our minds are finite, our ways are not Gods ways.

So, when my 8 year-old looks at me with tears in her eyes and asks why God doesn’t heal her – when she knows that He can, because she’s heard that He is her healer, my breath catches in my throat and I give the only answer I know. God loves her and He will never leave her or forsake her. But I don’t know why He doesn’t heal her. I don’t know why kids die of cancer or why people are bullies or entire families die in car accidents. The way I reconcile my faith with tragedy, disease and hurt is to know that God is in control and this world does not get the final word, He does. It sounds cliché, I know. It’s hard to trust, but it’s all I have to hold on to when she’s crying in pain or having a Lyme/PANDAS episode. This world – and these diseases –  do NOT get the final word – My God does.  

Sometimes, all I can do is cry, hold her, and tell her that I hate this disease as much as she does, I really do. And so does Jesus. He hates it and He is here for her in the middle of it. Our Lord comforts us in our time of need and that is what we can cling to when nothing else makes sense. He will never leave us. 

What I know right now is that Lyme is a thief and I will not be his victim anymore. I don’t want sickness in my life or in my daughter’s life. It’s taken enough from us, it has stolen too many days…no, it has stolen years.

Oh, God, please give us back the years the locusts have eaten. I am on my knees begging The Giver of all good things to give life back to my little girl and rid her body of disease. Give life where there is death. Kill this thief in his tracks.

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31 thoughts on “The Thief

  1. Hi I’m so sorry for you and your daughter. I just wanted to mention that high oxalates can cause the blinking. Maybe look at her supplements and diet and see if you can back down on the ones hi in oxalates and see if it helps. Sending love!!

  2. My prayers are with you to see your daughter cured of this dreadful illness. I watched my teenage son’s life changed forever by this robber of youth and hope. It took ten years to get to a place of normalcy and function, but never give up hope. We can defeat this enemy through persistence and treatment with all we know now and are learning every year.

  3. Thank you, Sharon. I appreciate your encouragement. I’m so sorry your son suffered with this awful disease. But glad he is better. Sometimes, just hearing that others have been through this and are on the other side of it, gives us so much strength in the daily mess of it all so I truly thank you for your comment. Blessings to you and your son.
    Much love, DeAnne

  4. You are such a light thru this time. Sometimes it can get hard to see God thru the darkest hours but it is then that we feel Him. He is strengthening you, you are loved.
    When we are weak is when we are humble before Him. Some things do not make sense to me with this robber, but i do cling to God. Sometimes I fail, I retreat, it gets too ovverwhelming. BUT he is there guiding me back and there to reassure us.
    My daughter has been the last of 4 of us to be suffering with this and the longest suffering as well. We get to see good weeks and then we get another symptom. She is 3. She has been treated now for almost a year. It’s tough. Some days she can’t walk to the bathroom or to her toys. Not many people understand.
    I have hope. I see God working. Just with our oldest at 5 being positive and where God led us for treatment. I would have never gone natural. Now we have a natural doc who has us come in spur of the moment, I can call when we get a new infection and he and his wife pray with and for us.
    I now research everything and I can share what I have learned. Part of our schooling is herbs. Learning about them, growing what we can here, preserving and treatment. It’s not just for Lyme but overall health and help treating the symptoms. God did this, he opened my eyes for a lot of things our family needed and could benifits from. He is awesome.
    You are a strong women and I pray God continues to give you the strength you need to get thru this. That He will show himself to you andyou and your daughter can rest under his wings. I read psalm 91 almost every night for a year. It was conforting. I pray He will show you his Will and path for you.

    1. I’m so sorry your daughter and your family is suffering. I will be praying for you. Thank you for the encouragement! Stay strong!!

  5. My daughter was 14 years old when she was diagnosed with Lyme disease. The thief stole ALL of her memory as she slept one night. Today, as a 20 year old young lady, she is happier and healthier than ever before in her life. I was able to publish a book about our faith base journey, LymeLight (www.lymelightbook.com). I would love to send you a (free) copy of my book if you email me your address. I am praying for you and your daughter.

    1. Thank you for the prayers and for giving us encouragement and hope. I would love a copy of the book. (Sorry I’m just now responding to this!)

  6. Hello DeAnne! Your daughter’s story has so many similarities to my 13 year old daughter’s experience. She is also a dancer, and is now in “remission”. Grateful doesn’t even come close to explaining how we feel today. Your post prompted me to post my story so you could see it. It’s still in a rough form, but thought it may be helpful now!

    1. I read your daughters story and was so encouraged by it. Thank you for writing and letting me know. I read it all to my daughter and she loved it. Thanks for giving us hope. xoxoxo!!

  7. I’m so sorry to hear about your daughter. Our girl came down with lyme couple of years ago, toughest thing we’ve ever have to deal with. It has been a long road so far and the journey is far from over.

    We’ve read countless parents suffering seeing their helpless children going from doing cartwheel to totally bedridden. You want to scream and cry, but you soon realize that is not going to help your child. The first year was a total leaning experience, and through our relentless research, we discovered that our daughter had come down with lyme.

    I’m not sure which protocols you’ve done so far for your daughter and type of testing, but it all depends what your daughter’s test results are. Last year a protocol we tried did have very positive results and she did at one point feel much better, though she did relapsed. We’ve just started a new protocol, which is suppose to be very promising. Will post back in few weeks. You can always contact us and we’ll be happy to share our research.

    God Bless and your daughter is in our prayers.

    1. I’m so sorry you can relate to our story. I hate that! We are pulsing antibiotics right now but also doing many natural treatments. It is a hard road because you don’t want to overburden their little systems with abx, but you also want to hit the bacteria hard because they are so sick from it so you have to support their immune system without causing it to crash. Delicate balance for sure. Praying for you and your daughter! Keep me posted!

  8. I’m so sorry. *HUGS* I have Lyme too, my circumstances are different, and I can battle through most days…but I fully recognize that not everyone can…and so sad to be losing a piece of childhood to the bastard tick. :-(

    1. Thank you. So sorry you can relate. Lyme in any form is brutal. Thank you for the empathy. Children should not have to suffer it!!

  9. Hi there,

    Thank you for sharing your beautiful story and your very raw pain. I have been there. My son is healthy today after battling Lyme since birth till about 18 months old. After many months of fevers (approx 175 days of fever at 105 degrees) I took my son to a prayer meeting. After the prayer meeting a lady walked up to me and gave me a dr’s name. This dr treated my son using applied kinesiology. At that time I did not even know what was wrong with my son even though we had had ever test run known to man.

    He used homeopathy and Erchonia cold laser treatments. My son was fever free in one month. Never got another fever. I might add too that he contracted this disease through my breastmilk. I also had Lyme and did not know it.

    The doctors name is Dr. Lester Holme in South Elgin IL.

    Saying a prayer for your daughter to live again and dance and have joy. The one thing that helped me through the darkness was to praise God and thank him for who He is. This would always bring me out of the dark…nno matter what you are going through there is always a reason to praise God and thank Him.

    1. Thank you for sharing your story! So glad to hear a success story!! Thank you for the prayers. We do thank Him for our blessings daily, it definitely helps take you out of the darkness – reminds you of the many things you have to be thankful for!

  10. It’s a Thief and a parasite! Treat with antiparasitics like Albendazole, Tindax and Ivermectin. Most anthelmintics cannot be taken long time due to they could cause neurological symptoms – more than what we get with Lyme- but from all Ivermectin is the one that can be taken one small dose a week, based on weight, for over a year!

  11. My heart aches for you and your daughter. I’m so sorry that you’re going through this. But there is hope – there is always hope! The doctor in the picture looks familiar to me. :) I’m so thankful for him! I’ve also been through this journey and am slowly but surely getting healed. It is a long process, but can be done! I pray the Lord gives you encouragement, strength and persistence through this journey.

    1. Thank you! He is an amazing doctor! I’m so thankful that he is dedicated to helping so many people. Praying for you, as well! xoxo!

  12. I am that little girl you spoke of. It’s a difficult life to live, maybe not so much because of the pain, but because you’re vastly different from other kids your age. However, that’s not a trait limited to Lyme disease…I think that bearing this pain while young was actually a blessing for me as a child and now as a young adult. I understand the pain of other disabled people, I know something about the harshness directed at those with an “invisible illnesses,” and I can identify on a first-hand basis with the struggles of the elderly, even if I’m not in their age bracket. I wouldn’t have this empathy if I didn’t have Lyme. I also wouldn’t have this robust relationship with God. Humility is essential to growth in Christ-likeness, and Lyme sure humbled me–AND I’m thankful that it did! Keep in mind 1 Corinthians 1:26-31, too. With God involved, life can be full even with Lyme. Every day is a struggle, but I also have loads of joy for the things I can still do: love my real life Prince Charming husband, sometimes make it to church, make paintings, have a little hobby jewelry business on the side, motivate healthy people to not waste their time and gifts, and keep in touch with pen pals. The song is true: “On Christ the solid Rock I stand, all other ground is sinking sand!” On the days when the pain is wretched and I can’t even figure out what to focus on, I play this song: https://www.youtube.com/watch?v=koSoPHWMLIA :) Keep pressing on relying on God to get you through!

    1. Thank you for your response! Love your story. Thank you for the encouragement and hope! That is what I strive to give to others through my blog. We hope to raise awareness of Lyme disease and other tick borne diseases and also give hope to others suffering by showing them that Jesus is there for them through it all. I don’t know how anyone can go through something like this without Him. Thank you for your words!! :)

  13. Please do a parasite cleanse. I have a friend that has suffered from Lyme for 3 years now….they never tested for parasites…other than lyme. We had a discussion and she started doing coffee enigmas and out came 3 inch long rope worms, on two different occasions. Now, she is preparing for a total parasite cleanse. Because they release toxins when dying your liver has to be healthy as to take the toxins. Please check her for parisites. Praying for your family and this sweet child.

  14. Praying for you. My kids were diagnosed at 4 & 6, its been a long road. We all had late stage, pic lines for 2-3 years in the beginning. Doing a lot better, bits of neuro stuff, but you energy a lot better and pain almost gone. Praying for you all. I hope your with great doctors and following it very closely. We had a team, from the neuro lyme opth, cardio, neurologiists, immunologists that all knew the lyme- also the supplemental doctors worked with our treatment plan from our LLMD. Takes many puzzle pieces. Thinking about you and your family.

    1. Ugh, I’m so sorry to hear about you and your kids. That is so awful. Glad you are getting better and learning how to navigate this journey. It is a crazy road isn’t it?! Thankful for others that truly know the struggle and can relate. Thank you for reading and for your comment. xoxo!

  15. Im so sorry to hear that about your baby. My son is 16 months old and was bit and got the bullseye rash. The Dr will NOT give him any antibiotic’s. We live in Alabama and don’t know any Dr that knows anything about Lyme’s disease. Do you know where we could start? I don’t understand why the government doesn’t do more to help people with Lyme.

    1. I’m so sorry to hear about your son! I cannot believe a doctor would not prescribe antibiotics even with a bullseye rash!! THAT IS LUDICROUS!! Find another doctor. (I’m sorry I am just now seeing this comment. I get about 100 spam comments a day and I don’t have time every day to sift through all of them.) I hope you found a doctor to get him some antibiotics! Prayers to you and your son.

  16. There has been a lot of research done on this but, obviously not enough. I am watching a family with three children suffer with this disease. All of them have it. Is this going to be the end of our life on earth for all?

    1. I’m so sorry to hear about the family. That’s so terrible! Hope you are passing on information. It does seem like it is getting to be more than epidemic, more like pandemic numbers. Scary stuff, indeed. Praying for better testing, better research and a cure!

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