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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Hey Jealousy…

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Jealousy can be a strange thing. It creeps up on me in the middle of the day, while I’m doing laundry or making coffee. I’m minding my own business and boom. Freaking Facebook! Why haven’t I learned my lesson? I know social media has many positives, but it also can be so damaging when we play the comparison game.

I have written a few posts over on my personal blog about my struggle with wanting another baby and how I let that dream go because of this disease. I tried for years after my second little girl to have another baby, to no avail. I got really sick around that same time. After being sick for a few years, I finally found out that I had three Tick-Borne Diseases and I have struggled with it ever since. My body is broken. It hasn’t been working in so many different ways and Lyme was the cause for my sudden infertility. I had to say goodbye to wanting another baby – not only to focus on my health, but because I was tired of living with the weight of unfulfilled expectation. I chose to be thankful for my girls and learn to be content without the big family I had always pictured.

Is it just me or does it seem like everyone and their sister is having babies lately? It’s awesome and I love it. I get my baby fixes from my sweet friends who let me drop in and hold their precious ones and get a whiff of newborn baby smell. :) I love seeing friends become a new mama for the first time or after years of trying for another child. It’s beautiful and I’m sincerely happy for them.

Then it happened. Several Lyme friends and acquaintances posted their joyful news of being pregnant. People I have struggled alongside. I am thrilled for their health, remission from Lyme and their babies to be. I truly am. I’m also human. (Here comes the jealousy part.) One of my friends is pregnant with her third. She prayed and wished and dreamed of having one more chance to be pregnant. Even in the throes of disease, she voiced her desire for another baby and she is pregnant.

When I saw one of the posts, I put my phone down and cried frustrated tears. I hate to admit it, but it’s the truth and for some reason, being vulnerable is the only way I know to write. I can say “I let go” as much as I want, but when it comes down to it – I’m a momma who wasn’t ready to say goodbye to having babies. Seeing this mama get her wish made me so happy, but so sad at the same time. I had prayed the same prayer. I wanted another one. I begged God to take this disease away and give me a baby. I finally surrendered my will, but my human nature wants to question and wonder if God truly has my best. It’s silly when you think about it. Sinful, human, jealous me – questioning my amazing, omnipotent, all-knowing God. I wrestled with him for a few days. I had fits of tears and fits of anger – just me and God… duking it out. It was a soul-searching, exhausting battle. And when all was said and done, I came to the end of myself.

Last week, I was looking up a specific verse and accidentally stumbled onto this one. I’m sure I’ve read it at some point in my life, but it had a new meaning for me.

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The words glared out at me like new, shiny objects I had never seen before. I studied the verse, memorized it and let it sink in. I stared at it forever and read it out loud after writing it down. It’s sitting on my desk, so I can see it every day and be reminded (in my own handwriting) that in the midst of my human suffering, worries, doubts, fears and yes – even jealousy – He is there for me. Even though it can feel like it with this disease, I am not alone and this is not the end. When this season of suffering is over (whether that be on this earth or in the one to come) He has promised me that He will:

Restore. (Heal, renew, redeem)

Confirm. (Validate, support, justify)

Strengthen. (Build up, sustain, empower)

Establish. (Create, provide, stabilize)

Those words are for me. That’s all I need to know. I don’t need to hold onto jealousy or doubt. I have a promise from my Father… I’m clinging to his purpose for me and no matter what that means or doesn’t mean…I will trust Him.

 

 

 

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Get Me Off Of This Roller-Coaster!

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One of the worst things about Lyme – I know I say that a lot, because sometimes every thing feels like the worst thing – but, really this seems to be one of the most horrible parts of the disease. I never know what a day will bring. I have no idea from one week to the next how my health will be. Making plans is stressful because, even if I’m having a pretty good week, next week may not be that way.

This summer, I started anti-malaria drugs in addition to my antibiotics and had some great results. I felt better than I had in years. Everyday seemed like a gift. I was able to be fully present in my life again. That felt amazing. I was getting glimpses of the woman I used to be and I was so excited that I had finally found a combo of drugs that was making a difference. For the first time since starting my treatment journey, I was having successful results!

Then a few weeks ago, I woke up with a migraine reminiscent of the ones I used to have when I couldn’t move or walk because of the intense pain. This was also the day I was scheduled to leave on a girls retreat road trip four hours out-of-town. I didn’t think I would make it. But the difference between the me before antibiotics/antimalarials and the difference of me two years ago when I had no diagnosis or treatment was that I went anyway. I rested and “medicated” and by the late afternoon, I was feeling better. I had a fantastic weekend with friends and I was able to keep up, for the most part.

Two years ago, I wouldn’t have been able to get out of bed, no matter how much I wanted to, or how hard I pushed myself. It just would not have happened. What I wish I could explain to others is the distinction between just being tired and being fatigued from disease. It is a vast difference. It is not even the tired you have when you have the flu. It is beyond anything I can explain. The only way I know how to explain it is you are completely incapacitated, can’t lift your head off the pillow. There is a heaviness that sits on your bones keeping you immobile and lethargic. I simply physically could not do the things I loved to do, nor could I generate any energy to do them.

Now, though I have more energy, I still have days where I can’t do as much as I would like. This is where the frustration comes in. It’s emotionally draining and I will break down in tears because “yesterday” was pain-free and wonderful but “today” feels like I’m fighting for my life again. It seems like a cruel joke to have glimpses of health, just to have them ripped away over and over and over.

It’s the nature of the disease. Sometimes it’s herxing* or it might be the bacteria moving into different areas of the body and causing different symptoms. Either way, it’s an awful roller-coaster ride and I want to jump off. This week has been slow and I’m exhausted. I’ve had some excruciating joint pain that had me writhing in pain. This was after days of not having any pain. While I’m thankful for the new-found combo of meds that are helping, this back and forth is getting old. Will I ever fully recover? When will I see remission? LLMD’s say that it’s an underlying rule that you must take one month of long-term antibiotics for every year you were infected with the Tick-Borne Disease before you will start seeing long-term results. My problem is that I don’t even know how many years this bacteria has been in my body. It could have been 30 years and that is a fear that looms in the background of my daily life.

Regardless of the crazy roller-coaster, it has been amazing to be able to participate in life again. I went shopping and had lunch with a friend last week and the very next day was able to get up and get going for another busy day. Getting up in the morning and getting ready for the day without having to take breaks or naps in between, hasn’t happened in YEARS. It may seem like a minor thing to most people to be able to get up and get ready for the day, but these are huge baby steps for me. I see my life peeking through the haze and I am so eager to reach out and  grasp it with both hands. I am ready to live a life without pain and debilitating fatigue. In the meantime, I wait for the roller coaster to come to a complete stop, so that I can enjoy the good days, without fear of the future.

*Jarisch-Herxheimer Reaction: It resembles bacterial sepsis and can occur after initiation of antibacterials, such as penicillin or tetracycline, for the treatment of louse-borne relapsing fever and in tick-borne relapsing fever. An association has been found between the release of heat-stable proteins from spirochetes and the reaction. Typically, the death of these bacteria and the associated release of endotoxins or lipoproteins occurs faster than the body can remove the substances. It usually manifests within a few hours of the first dose of antibiotic as feverchillsrigorhypotensionheadachetachycardiahyperventilationvasodilation with flushingmyalgia (muscle pain), exacerbation of skin lesions and anxiety. The intensity of the reaction indicates the severity of inflammation

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A Bad Day

The birds tell me it is morning, but I cannot force my eyes open. I can already tell it is going to be a day my girls are going to have to fend for themselves for most of the morning. I cringe with every movement. Joints crack as my bones bend. My ears are ringing and the pressure in my head feels like it may burst at any second. I hear the faint sounds of little feet on hard wood floors in the kitchen and then the pantry door opens. It is my youngest. This summer she has been the first one awake most days. She is always the first one who is hungry. I want so badly to jump out of bed, run into the kitchen, smother her face with kisses and make her a huge breakfast of pancakes and eggs. I imagine me and my girls eating breakfast together, planning our day and having a fun, “normal” morning…the ones where mommies get up, get ready for the day and actually get out of the house. I know this is not going to happen. Not today. I still cannot open my eyes. I fall back to a passed-out, sick, exhausted sleep.

I don’t know how much time has passed, but I hear her voice near my face. She is asking me if she can have something – food, markers, a game. It happens a few times during the morning. They have been good today. They let me sleep. They know it is important for me to rest, but I don’t want to be resting. I want to be with them. I want to participate in my own life. I miss it more than I can express. I feel the familiar twinge of guilt mingled with bitterness. Then as quickly as that feeling comes over me, an optimistic thought follows and I pray scripture under my breath. I will not let this disease make me a bitter, depressed person.

I attempt to sit up and my head swims. I would give anything to feel rested after 8 hours of sleep. Instead, I feel drugged, dizzy and my body begs me to stay under the covers. I pull my ridiculously tangled hair up in a bun and slowly make my way to the kitchen… each step feeling heavier than the last.

I wrap my arms around my girls who are helping themselves to a mid-morning snack. I cut them up some fruit and sit with them for a minute. I thank them for entertaining themselves so that I could rest. I promise to take them for ice cream later as a treat, hoping my body cooperates for the outing. It might have to be tomorrow, but I am going to push myself to at least get a shower.

First things first – meds, coffee, shot. Sometimes the order changes because coffee likes to come first. The coffee starts its dripping, as I desperately try to clear the fog from my brain. I have no appetite, but it is necessary to get something in my stomach before I take my pills. I pull out my box o’ meds and drink my water, as I take a bite of toast. I get out my B12 shots and warm up the syringe. I give myself a shot, take a few more sips of coffee and kiss my girls on their foreheads. I have to lie down for another hour before my shower attempt, but I’m determined to get out of the house today.

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Treatment: it’s a 24 hour job…

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After one errand, I come home exhausted and ready to crash, but there are still at least 6 hours till bedtime. The thought of preparing dinner is too overwhelming, so I lie down on the floor near the girls and watch them play Barbies. My muscles begin twitching, a sign that some herxing will be coming soon. I brace myself for what might come in the next few hours – focusing on drinking water and detoxing as best I can. My girls start fighting and my head cannot handle the jolting noise. Their argument results in me being short and heated with them. I instantly regret my words. It is not their fault. I am frustrated with my body. I am so sensitive to noise. We make peace and I turn my attention to dinner, pushing past the herx as best I can.

Night finally comes, bringing a worsening of pain, burning joints and contracting muscles. Sleep does not come easily. As my body reaches through the pain grasping for needed sleep, I pray that tomorrow will be a better day. I have too many things I want to do, need to do… must do. I say it out loud. “Please. Tomorrow. Be better.” Because this…this is not living and I want to live again.

 

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Lyme: In Our Own Words

Want to know what it’s like to have a Tick-Borne Illness that affects the body in different ways everyday, with no timeline of when there will be an end to the pain? Here are some quotes from those who suffer from Lyme and other Tick-Borne Illnesses. I hope this helps others to understand the nature of this deadly disease.

Lyme Disease: In their own words…

“Lyme disease has taught me how to be a soldier and move forward, for my family and I regardless of my pain and fatigue.” –Nicole

“What do you do when you are in chronic physical pain? It never lets up and continues every second of your day. It is like it sucks your very soul out of your body and you start to lose yourself. There is no longer an option to be strong. You just want to survive. You want to understand what’s making your body hurt so bad. What do you do? Physical pain disrupts your emotions, your will, your motivation, your inner peace, your everything.”  –Angel

“I ventured to one game of my sons tonight. It was very hard, as being outside bothers me more. I just looked straight ahead and didn’t move my head. No one talks to me anymore, which I couldn’t do anyway. I know they just don’t know what to say, even though I have known them for 5 years. I was extremely dizzy and the world was spinning. I had no idea what was going on, but I figure, at least I’m trying. I pray and hope to get out of the wheel chair someday and walk.” –Rachel, Missouri

“I want to get things done and push and push myself and then when I don’t get it all done I get so frustrated with myself.” –Melody, Virginia

“I wake each morning trembling with pain. After an hour of waiting for pain meds to kick in, I make it to the bathroom. I venture to the kitchen to make coffee. My room is pitch black or so it seems. My eyes are closed and remain that way nearly 80% of the day. My son, who is five, doesn’t know I am really sick. He says I’m boring. I take him to the park, snap a couple pictures and close my eyes. He drags me out of bed every 5 min to look at this and look at that. I have learned to just lay in his bed. To him, I am the best. He tells people I got smashed in the army. I have abandoned all aspersions of truly making it out of this bed.” –Lyme sufferer, Illinois

“I lost my car, job, health, vibrancy, and beautiful hair along with my nerves, peaceful sleep, sense of purpose and muscle tone. I am scared. I have been treating it for a year and am still incredibly messed up. I only had it for 2 1/2 years before proper diagnosis, some people have it much worse than I do. I can’t imagine their scare. I, Lara, vow to get well. I vow to participate in my treatment, even if it means enduring temporary physical, emotional, and mental changes in my life. I vow to stick with this course of treatments and not look back. I vow to do everything in my power to heal and to live.” –Lara, Houston

It is time for the voices of the Lyme community to be heard. We will not go silently. Our lives are on the line. I will not stop advocating for this terrible disease until the CDC, ISDA and insurance companies have changed their policies, so that people fighting Lyme Disease can have a chance for wellness. Prevent. Educate. Advocate.

 

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Five Things You Need To Know!

Tick-Borne Disease prevention is the most important thing you should know for spring and summer. You can prevent a nightmare of never-ending pain, fatigue, debilitating symptoms, thousands of dollars in medical bills, expensive treatments, side effects from medications, years of inaccurate diagnosis and the emotional stress of doctors not believing you or having no idea what to do with you as a patient. It is the hardest thing I have ever gone through in my life, but it is now my mission to educate others on Tick-Borne Diseases.

Unlike many diseases, this is one you can hopefully prevent just by taking simple precautions and educating yourself on Tick-Borne Disease! It’s not just Lyme Disease that ticks can transmit. There are many tick-borne illnesses that are as bad, or worse than Lyme. Here is a list of the most common Tick-Borne Diseases: Bartonella, Babesiosis, Enrlichiosis, Rocky Mountain Spotted Fever, Spotted Fever Rickettsia, Anaplasmosis, Tick-Borne Relapsing Fever, Southern Tick-Associated Rash Illness, Encephalitis, and Tularemia. A new one was discovered a few months ago called the “Heartland Virus.” There is no permanent cure for Tick-Borne Disease!!

As my blood tests indicate thus far, I am infected with Lyme, Bartonella and Babesiosis. It is possible to contract several diseases from ONE tick bite. One of the most awful parts of having this disease is the knowledge that I probably could have prevented these diseases, had I only been aware of the facts. I wish I had known how dangerous ticks can be and how seemingly impossible it is to eradicate the bacteria from your body. So, if you’re reading this, consider yourself warned. Please don’t let this information go ignored.

Here are my top five things you should know to prevent Tick-Borne Disease:

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1. Be AWARE. Just the simple knowledge that most ticks can transmit some form of disease can help you. You will be more aware of your environment, you will keep your eyes open for creepy crawlies on yourself and your kiddos and you will make sure to keep your pets and yard protected – all year round! Do a search online for “diatomaceous earth” – it’s natural and it will keep your yard free from ticks!

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2. During the height of tick season in spring and summer, cover yourself and your clothing in bug repellant (DEET or permethrin) while you or your loved ones are outside. You can even use natural essential oils like Eucalyptus to keep the ticks at bay. Here are some good tips for using Essential Oils – Natural Insect Repellant. To protect yourself from risk of exposure to Lyme Disease and other Tick-Borne Illnesses, you should avoid areas that are likely infested with ticks. When hiking or camping, wear light-colored clothes and long-sleeved shirts, so you can easily spot and remove a tick before it becomes attached. Since ticks are close to the ground, tuck your pants into your socks and wear high rubber boots to minimize exposure.

This is the size of ticks in the height of tick season. They are hungry and will attach to any warm body! Nymph ticks are so hard to spot, especially if it attaches to a belly button or in between your toes.
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Inspect every bite!

3. ALWAYS, always, always do tick checks after being outdoors! I simply cannot stress this enough. I know it sounds like a time-consuming annoyance, but it only takes a few seconds and it could save you from a lifetime of pain and misery. If I had known to do this, I may have not gotten this incurable disease. My girls do tick checks as a habit now – even if they have only played outside for a short time. It has become part of our routine – just like brushing our teeth and taking a bath. It’s another way they know to take care of themselves. My girls have seen first-hand what this disease can do and I guess that is why they have never questioned our routine tick checks. Believe me, it is worth the short time it takes!!

A deer tick feeding on human blood
A deer tick feeding on human blood

4. If you do find a tick attached, take my word for it and DO NOT take any chances. Better to be safe than sorry. Learn how to detach and kill the tick the correct way so as to keep it from transmitting the bacteria (click here for instructions). Make sure you save the tick in a zip lock bag in case you start experiencing symptoms. It is easier to test the tick for disease. The tests for Lyme and co-infections for humans are terribly inaccurate and unreliable. Also, demand a round of antibiotics from your doctor after the tick has been found. For the record, it is inexcusable that doctors have no problem writing prescriptions for years worth of antibiotics for ACNE (!!), but not for a disease that destroys your quality of life and can cause death. I have read far too many testimonials of Lyme sufferers who assumed that since the tick was attached for a short time, they wouldn’t get sick. They wound up with Lyme, as well as co-infections. The CDC and ISDA perpetuates very outdated information. It is your body and your life. You have to be your own advocate. No one else is going to do it for you.

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5. Last but not least, know the early signs and symptoms of Tick-Borne Disease! Here are just a few:

  • Body/muscle aches
  • Fever
  • Headaches
  • Fatigue
  • Joint pain
  • Rash
  • Stiff neck
  • Facial paralysis

Many people suffering from Tick-Borne Disease did not have any early symptoms. You may be perfectly fine one day and the very next, unable to walk. Every case is unique because of how the bacteria affects each person differently, but the eventual later stage symptoms are similar – severe fatigue, joint pain/inflammation, IBS issues and neurological problems to name a few. Early symptoms may not be reliable, so your best bet is to immediately get treated if you find a tick attached so your risk of contracting chronic Lyme disease is diminished.

The key to this disease is to fight back with awareness, knowledge and prevention. You can still enjoy the outdoors and have a fun summer, if you take these precautions. In doing so, you will have the peace of mind that you are keeping your family safe and healthy!

These are my favorite links on Lyme and Tick-Borne Disease prevention. Thanks for reading!

http://www.tickencounter.org/

http://tbdalliance.org/get-informed/start-preventing

http://www.ilads.org/lyme_disease/lyme_tips.html

Prevent, Educate, Advocate.

XOXO, DeAnne

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Worn

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I have been quite overwhelmed with all that I have to do and remember for my treatment protocol. I can’t keep it straight. I feel awful and the daily B-12 shots don’t seem to be doing their job. I am beyond worn out fighting this battle. I am switching up my meds soon and I hope the next antibiotic will work better for me. I want more good days. This is not the road I want to be on… it seems never-ending.

Some days, I don’t know how to fight.

Some days, I absolutely loathe talking about Lyme Disease.

Some days, I want people to look at me like they used to and not with the sympathetic, “I feel so sorry for you” look… I  hate that look.

Some days, I don’t make many plans because I dread that I will have to cancel them.

Some days, I desperately miss the body and mind I once had that was strong and capable, sharp and dependable.

Some days, I want to think about anything but how my body is failing me.

Some days, I just want my old life back… I miss it more than usual today.

God knew the groanings of my soul this week. I heard this song, for the first time today, and the words fell deep into my heart and gave me peace. I hope it encourages you, no matter what you are facing on your journey. I am thankful that the rest my Father gives is better than any medication, natural remedy or treatment protocol. I am turning my eyes upward and with fragile, trembling hands I cling to the hope that only He can give.

“My prayers are wearing thin. I’m worn before the day begins. I’ve lost my will to fight. I’m worn so, heaven come and flood my eyes…”

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He IS There…

Hope_Image

My Lyme symptoms and the side effects from starting my new treatment are kicking my butt this week but I’m thankful I have these medications. I know they are doing their job but I yearn to be on the other side of this. I see the bottles sitting on my kitchen counter, my nightstand and on my bathroom sink and I know it’s nothing short of a miracle that they are there, but sometimes it sucks that the meds have to be there in the first place. It feels like a full-time job just to fight the discouragement and depression that comes on so strongly with chronic pain and disease.

It hurts. It’s hard. It’s lonely. But I’m praying. I’m waiting. I’m sitting in expectancy… because I have hope. Hope is a big word that we can cling to when we have nothing left. It’s full and deep, whole and healing. Hope shouts over the negative whispers with life affirming bursts of joy. Hope covers the dark places with light that restores our peace and replaces the fear. Even when my faith wavers and I forget – hope lingers. Even when I lose the strength to try, the Lord gently reminds me He is there as he opens my heart to His hope. No matter how many times I call on Him, no matter how many days I get discouraged and question his ways…or doubt his sovereignty, He is there and I am covered in His love.

I heard this song recently and I wanted to share it. It struck quite a chord with me but I think anyone can relate to the lyrics. We have all been there…whether “there” is chronic illness, past wounds, death of a loved one, a deep regret, a colossal mistake, a tragic season of life… or simply being human in this fallen world – I think this song can apply to all of us. We all get tired of holding on. Sometimes it can be easy to get stuck between not being able to let go but not being willing to move on. How many times have we cried out to him for relief? For answers? For help? How long must we do that? We want to see what God is up to… yesterday! We want to know why He’s not taking the pain away or providing the miracle that we are so desperately crying out for. This world loves quick fixes and instant remedies. We want our wounds healed – STAT. Sometimes, the answers may not come the way we want them to or as quickly – maybe never, but He gives us the strength to keep breathing through it all. He walks beside us – giving us a way to make it through one more day, one more doctor visit, one more hard conversation, one more grieving process, one more goodbye – because that is where the hope lies. We must take one more step and turn over one more stone. Maybe we won’t know this side of heaven why things happen the way they do, but it will develop our character, change our focus and bring us closer to our Father. And that… well, that is worth it.

“Well, everybody’s got a story to tell. And everybody’s got a wound to be healed. I want to believe there’s beauty here. ‘Cause oh, I get so tired of holding on. I can’t let go, I can’t move on. I want to believe there’s meaning here. How many times have you heard me cry out, “God please take this?” How many times have you given me strength to just keep breathing? Oh, I need you. God, I need you now.”  -Plumb

What is your story? Are you crying out to Him? He is there for you. He is there… in the mess and in the hope.

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Life With Lyme

 

Since it is Lyme Disease Awareness month, I decided to write about this disease that has taken over my body and my life over the past few years. **Disclaimer: I’m going to be very transparent and brutally honest.**

Doctors don’t tell someone with cancer, “You are just depressed.” or “No more testing for your symptom of the week.” Or my personal favorite, “Just get more sleep.”I would hope that cancer patients don’t get told, “Well, you look healthy so I am sure you are fine.” Or “It can’t be that bad, ’cause you look great.” Who would say that to someone suffering?! No one. I have heard that not just once, but more times than I care to remember. I don’t have Cancer, but I have Late Stage Lyme Disease and I believe it is time for the medical community to take it just as seriously as Cancer. Lyme Disease is devastating and it kills. 

The diagnostic tests for Lyme are terrible and extremely unreliable to say the least. Even though it is the most common infectious disease, there is currently only a handful of labs that offer a reliable test. (IgeneX is the best from what I have researched.) It is expensive, but to Lyme sufferers it is totally worth it to have lab paperwork that clearly shows that Lyme is present and active in the body.

Borrelia Burgdorferi is what causes my pain, immobilizing fatigue, tremors and neurological symptoms. It may have a funny name, but it is unbelievably damaging to the body even though my face may not reveal the pain, my make-up may help to conceal the dark blue shadows hanging under my eyes and lipstick adds color to my normally ashen face. In other words, most days I don’t really look sick. I have read of Lyme patients that have put up with it for 15-20 years or longer and they are still suffering from this torturous disease.  Lyme disease is seriously misunderstood, but it shouldn’t be. There has been opportunity for the world to learn about it, but instead, doctors have turned a blind eye. Lyme awareness is slim to none in most states. Some doctors still don’t believe that Chronic Lyme Disease exists – they don’t even acknowledge it! If you would like more information on the political issues surrounding CLD, the movie “Under Our Skin” is a great documentary, that not only gives personal accounts of the illness, but explains in detail the controversy surrounding this mysterious disease.

From my perspective, much of the confusion surrounding this growing epidemic lies in the fact that there are no definitive answers and in some cases, there isn’t a clear end. Most of the questions I get pertain to when my treatment will be over or when I will I start getting better. Or as my girls ask, “When are you going to be yourself again?” I think that means, when are our lives going to get back to normal? It’s a hard question for me to answer. Actually, I can’t answer it. I have no idea. Chronic Lyme is a very complex, confusing and terribly frustrating disease. Even after successful treatment, there is no guarantee that it will stay that way.

IV treatments
Drip…Drip…Drip
My daily supplements and meds

The bacterium has a mind of its own. It’s a shape shifter. When the bacteria is in the spiral shape (spirochete), it can drill into organs and joints or go in and out of the brain causing devastating effects all over the body. But when treatment starts it goes into a cyst or even a granule form where it creates a bio-film around itself that protects it during treatment. Then it hides and survives in the lymph nodes and joints where it will lie dormant until treatment is done. Eventually – even years later,  it can start reeking havoc on the body once again. It damages the immune system so severely that the immune system is completely compromised. A Lyme body is much more susceptible to toxins and viruses than a healthy body because of the compromised immune system, which may explain why sufferers have 50+ symptoms.

Spirochetes magnified under Dark Field Microscopy

If, by chance, you beat the odds and are lucky enough to receive an accurate diagnosis, find a doctor that will treat you, have the money for the treatment (insurance usually won’t cover long-term antibiotics and definitely not alternative methods), the treatment works and there is successful eradication of the organism – even then there could be longterm, irreversible damage. It is truly a maddening illness. Sadly, it is not surprising the number of suicide related deaths among CLD patients. The diagnosis feels like a lifetime sentence.

I don’t think the general public realizes how serious tick-borne illness is and maybe, most importantly, how easy it is to contract. Fifty percent of ticks have some form of disease bearing bacteria in them and they are hungry. It only takes one attached tick – even if it has only been attached for a short time, to transmit bacteria. There is about a 1-2 week window to discover it or the bite and get anti-biotic treatment. Put it this way, if you thought you had an insect bite that was hardly bothersome or noticeable, would you go to the doctor for that? Nope! Neither did I. Many people don’t get the severe symptoms until it is too late to do the quick antibiotic treatment. It is a common misperception that the tick will be visible, will cause pain or will instantly cause a big red rash and flu-like symptoms. Sometimes it does happen that way, but not always. That is why prevention is of the upmost importance. If that 1-2 week window of opportunity passes, welcome to my world. It is incredibly hard to get rid of this bacteria and the symptoms only get worse over time.

During the height of tick season, ticks are in the “nymph” stage and can look smaller than a poppy-seed. In other words, they are very easy to miss. Many Lyme sufferers never saw a tick and don’t even remember being bitten. I didn’t. Nor did I have the infamous “bullseye rash.” I have never been a fear-monger and I’m definitely not trying to scare anyone, but I think I would be doing a horrible disservice to my friends and family if I didn’t let everyone know how to prevent tick-borne diseases.

Go to this link and it will give you clear instructions on how to keep from getting bit from a tick and what to do in case you find one attached.  Click Here ——> Prevention

Can you find the tick in this picture? (There really is one!)

I admit that I really didn’t want to write a detailed post about CLD. My husband wanted me to. I’m actually getting sick and tired of talking about, thinking about and researching Lyme. I am writing this at 3am from a place of deep physical pain and fatigue. A place in which I have to be somewhat absent in my daughters lives because of this ridiculous illness. A place where I can’t give my husband one hundred percent of myself. A place where I don’t ever know from one day to the next just how bad my symptoms will be and what I will and won’t be able to do in a given day. A place from when I am asked how I am doing, I have learned to just smile and say I’m getting better because it’s easier than explaining all of this.

I am so weary of having a great day and being physically able to do more than one activity to just end up paying for it the next day and barely being able to lift my head off the pillow. I hate that my “normal” is going to sleep in severe pain and waking up in severe pain. Many nights I don’t sleep more than a few hours due to the discomfort. Often my joints feel like they are on fire. My muscles continually ache and are so stiff I can’t stretch or move very well. In the mornings my body feels so heavy and my feet too sore to take one step and I fall back into bed hoping that my family will get by without me a few more minutes. My left eye occasionally gets swollen, so my eye stays partially closed for periods of time. I have constant muscle spasms, headaches, light and sound sensitivity, heart palpitations, trembling/tingling/numb hands and feet, memory problems and slow thought processes. It is extremely difficult for me to do simple, everyday things like going to the grocery store where decision-making is almost impossible. I try not to go more than once a week because it is just too much. I feel like I have been taken out of life for the time being. My IV treatments alone total too many hours and moments of living that I missed, not to mention the years that have been hindered from participating in my own life.

My daughter had her first “real” elementary school field trip last week and I was going to go with her. I even signed up weeks in advance to go as a parent volunteer because I was determined that this illness wasn’t going to keep me from the important things in my life. But as the day got closer, I realized I had spoken too soon. There was no way I would be able to be there. Thankfully, Ryan was able to go in my place. He and Chloe had a great day together exploring nature and finding tadpoles and lizards. I am thankful that he was able to go. I am happy for that. But I am not happy that this disease continues to steal moments like that away from me. Like many of my friends and family members, I am also asking, “When will it end?”

“Uninvited Company”
 By DeAnne LeBlanc

When the world sleeps

I do not

There is a heaviness in my bones

Movement is a loathsome task

I have a constant itch – under my cracked skin…

But I can never scratch it

The ache the ache

It radiates

Throughout every muscle and joint

My brain – a balloon of fog and mud

Floating untethered to my neck

Thoughts come slowly – if at all

My mind continually bouncing bouncing

Bouncing words

Meaningless words

Like an aimlessly thrown rubber ball

And the forgetting – oh, the forgetting – 

Forgetting what I just saw

I yearn and beg for the morning

A morning in which I will awake to being me

Just me

No longer greeted by misery

Because he is not welcome here

He has been the most dreadful company


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The Darkest Hour

“Suffering has been stronger than all other teaching, and has taught me to understand what your heart used to be. I have been bent and broken, but – I hope – into a better shape.”      –Charles Dickens


 

There is a beautiful saying amongst the Irish peasantry to inspire hope under adverse circumstances:- “Remember,” they say, “that the darkest hour of all is the hour before day.”     –Samuel Lover

I have always thought that the saying, “It’s always darkest before the dawn” was a melodramatic cliche, an overused phrase to make us feel better about bad situations. However, I had a moment yesterday that gave me hope and made me realize why that phrase is used so often. But since I have been slacking on my blog lately, I must explain what happened before that moment.

Last week during my tenth treatment, I had a black out in the bathroom at the doctor’s office during which my IV ripped out causing blood to go everywhere and everyone in the office to throughly panic and freak out a little bit – including myself. Thankfully, my doctor heard my scream from his office and came and stopped the bleeding while my nurse helped get things under control. My blood pressure sky rocketed and Ryan had to leave work to come get me. It was a crazy day to say the least. The blackout, high blood pressure and some kidney pain I had been having was the result of my body not being able to filter out the toxins and neurotoxins fast enough that the treatment was getting out of the bacteria. Basically, the bacteria releases these toxins constantly in my body but due to the aggressive treatment, they were coming out faster than my body could handle. My doctor told me my body needed to take a short break from treatments and to go off all my supplements as well.

After some 15-20 kidney injections, the next few days were a little discouraging for me. Despite knowing that the treatments were getting to the bacteria and doing something – I started thinking that maybe this alternative treatment wasn’t going to work for me. That maybe I was going to have to do antibiotic treatment after all. After what I had read about antibiotics, I had decided awhile back that they were going to be my last resort. They can make chronic Lyme worse by obliterating the immune system, killing all the good bacteria in the body and can even strengthen the spirochetes. It causes a quick remission from the disease but then you relapse quickly after antibiotic treatment. My goal was to get rid of them for good, even though there are not many chronic Lyme cases of this happening.

So, quitting treatments – even if it was temporary – was disheartening for me. It was the last thing I wanted to do. I was fearful that a loss in momentum with these dreadful suckers would give them time to fight back. While I was off the IV treatments, some of the progress I felt like I had made over the last month seemed to go away. I felt like I was right back to square one and I began to question if I would have to live with this disease for the rest of my life or at the very least, have to get these treatments indefinitely just to feel halfway decent. I started to believe a lot of the literature that reiterated again and again that there was absolutely “no cure for chronic Lyme.” It truly was a dark week for me minus my birthday which was a happy night. I prayed, I felt sorry for myself, I was grouchy and short tempered, and I was very very tired – physically but also emotionally. I almost canceled my treatment yesterday because I just didn’t want to do anything. I was done thinking about, reading about and worrying about Lyme. I was just done. Then I came across this,

“Do not, I beseech you be troubled by the increase of forces already in dissolution. You have mistaken the hour of the night: it is already morning.” –G.K. Chesterson

I was wallowing in my darkness but it was about to be morning. I just didn’t know it yet.

So I started the day out yesterday just wanting to get it over with. Everything in me wanted to leave as I sat down in the comfy recliner and went through the next 30 or so minutes of “good vein finding.” My veins apparently do not like IV’s so it has become quite the process, sometimes involving several sticks and pokes to find a good one that will cooperate. As my third bag was starting, my doctor said he wanted to do another blood analysis so he pricked my finger as he made a joke about my new nickname  around the office being “pin cushion” because of all the needle sticks and finger pricks I get. I sat patiently, trying not to have expectations or false hopes. I didn’t even let my mind think of what he was seeing. I just prayed that my treatment would be over with as fast as possible so I could go home.

After about 10 minutes my doctor came back into the room, pulled up a chair and sat down in front of me with a smile. He said he couldn’t find any spirochetes in my blood this time and there weren’t even any left in the cyst form. I think I remember him saying it again, probably because my face was revealing complete disbelief. I mumbled a few questions and he patiently answered. He continued to tell me that he wants me to do a few more treatments, continue with the supplements and have some more prolozone injections in case some of the bacteria was hiding in my joints.  But from the looks of my blood, we had successfully eradicated the spirochetes. The next step would be to repair my body from all the damage the bacteria had caused. It was a step I didn’t know for sure if I would ever get to a couple months ago and yet here I was.

Although, I continue to have pain and the fatigue is still quite terrible, I am hopeful that I will be back to myself in the near future. I have read that some chronic Lyme sufferers have permanent damage from the bacteria being in their body for so long but after this miracle that I have witnessed, I know that anything is possible. I am praying that the damage will be quickly reversed! At least I know I am definitely on the road to healing! I know from this experience that I will never again take physical health for granted. Thank you to everyone who has been praying for me, sending me letters, making me and my family healthy meals, checking in on me and encouraging me during this season of my life. You will never know this side of heaven how thankful we are and how much it helped. I love you all!!

**Update 4/27/12 – Doctor visit last week confirmed that I still have the Lyme bacteria. It is not yet completely eradicated like I previously thought. Adrenals and kidneys are under so much stress right now that I am focusing on getting those healthy before doing the IV treatments again. Most of my symptoms are still continuing EXCEPT the migraines for now. I will take it! :) Will do a few more IV’s in about a week and do re-check in about a month or so. Thanks everyone for all the prayers!

“Blessings alone do not open our eyes. Indeed, blessings by themselves tend to close our eyes. We do not come to know Him in the blessing, but in the breaking. –Chip Brogden

 

 

 

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