My Lyme Story

Lyme Disease isnt RealThrough the years I’ve told my Lyme Disease story many times. But recently a new friend of mine asked me to tell her about Lyme and my story, and I realized that maybe I should tell it again.  Getting the information out and telling my story helps to bring understanding and maybe even a step closer to finding a cure for this deadly disease.

How it began

I was bitten by a common deer tick as a child. Wild and free, I roamed the Tennessee woods and was often covered in bug bites and rashes. Looking back, I now remember when I was bitten.  I was 12, almost 13 and I flicked the tick off as easily as a leaf out of my hair. Ticks were part of life on a farm.

A week or so later I got the bull’s eye rash and didn’t think much of it. I was always covered in poison ivy or something crazy, this wasn’t anything new.  And it was another reason for my Gram to fuss over me, lecture me about being in the woods, and possibly get into trouble for being where I shouldn’t have been. I let it go.  2 weeks later I contracted chicken pox, and my fever, aches, and pains, and early symptoms of Lyme disease were mistaken for chicken pox.

But my life took a sudden turn, and I’d never feel like running wild through the woods again.

After that year, I battled with feeling tired, weak, lacked any appetite.  I was called “sickly” or even “lazy, ” and my complaints went unheard.

Things got worse

As a teen I was always tired, I would sleep away the weekend, went to bed at 9 and protested getting up for school.  My body hurt, my skin was so sensitive that I was always uncomfortable.  But along with this my family life struggled and my health wasn’t important. 

Years went by, I would see doctor after doctor and complained about how I felt. But my fears were unheard and blown off.  I was told that I needed to “get out more” or maybe it was all in my head.  So I stopped complaining.

All in my head

Even I started to think that the way I was feeling was all in my head. Doctor after doctor had a different answer to exactly why as a teen and young adult that I was constantly exhausted, forgetful, woke with such stiffness in my muscles and joints that you could actually hear them stretching out as I moved. 

I was depressed, worried that maybe I had something very wrong with me and the doctors just weren’t going to do the right tests until it was too late.

As the symptoms started growing worse, my fear grew out of control as well. 

The peak of my illness

After the birth of my 3rd child, my illness reached a peak. My hands began to curl up so tight as my muscles clamped down.  I began to forget the simplest things, and I worried that I wouldn’t be able to care for my children. Something had to be done, I needed a miracle.

My first diagnosis to explain my tremors and slurred speech was Parkinson’s disease. I began medication and was sent home.  The meds were awful and left me sick and feeling out of it. I also gained 70lbs from the steroids and medications.  When that didn’t seem to help, another MRI was ordered, and a new diagnosis of MS was placed upon me. 

More meds, more side-effects, more time wasted.  Perhaps it was a brain tumor?  More tests, more waiting, more tears.

My answer

My miracle came when I heard about Lyme disease and what happens when it is left untreated for too long.  I went to my doctor and begged for the Lyme tests be done. It didn’t take long for my results return that I had high levels of Lyme bacteria in my body. 

 I knew only a little about Lyme disease, it was something you heard about when you were going to be hiking out in the woods where ticks could crawl on you. But I couldn’t remember being bitten recently.

I was an adult in her 30’s, how could something like that have gone unnoticed for all of these years?

Misdiagnoses are common

Lyme disease is commonly misdiagnosed as several other diseases and conditions, everything from Mono to MS. 

I was put on high doses of antibiotics by a doctor who had little understanding of how to treat Lyme disease that was not in the normal 30-day window of infection.

This was the first of many times I would go through the terrible side effects of the Herx reaction to treatment. I would suffer for a few more years until I found a doctor who not only knew of Lyme but treated his Chronic Lyme patients with innovative therapy and constant monitoring. 

A good Lyme Doctor becomes your best friend

He changed my life and has been instrumental in giving me power over my disease.  Never once has he blamed any of my wacky symptoms as being “In My Head” as I have heard other Lymies being told.  Instead, he asked me more in-depth questions and talked to me about how we would manage my symptoms. 

He gave me the power over my treatment and never makes me feel like I am a victim of something terrible.  His gentle smile and ability to laugh with me is always a comfort when I come to him with fears and concerns.

Living with Lyme

Now I am treated with medications for tremors, physical therapy to keep my circulation flowing smoothly and massage therapy to work on the pain and muscle issues.  I watch everything I eat and stay away from processed foods, meat, and artificial sweeteners. I have been vegetarian for about 12 years, but recently had to add in fish to counter the memory and  joint issues I was having.

There are a lot of things that I keep up on to live with Stage 3 Lyme disease and live a normal life. Lyme disease doesn’t have to be the end of the world. But it’s a new world to live in. 

 There are days when I just feel so weak and want to curl up on the couch with my dog and sleep.  Sadly giving in to that has led to weight gain that has added to my discomfort and frustration.

It’s easier to live a sedentary life when your body fights every movement you make, tells your brain how exhausted it is, and retaliation against most treatments.  Sometimes I feel just too overwhelmed and feel myself on the verge of a meltdown. 

Other times I find myself awake in the middle of the night so upset and frustrated that I can’t sleep. But when those fears become too much, I am so thankful to be able to wake my husband up in the middle of the night and know he will always make me feel better.  I have amazing friends to lean on who always encourage me and keep my mood up.  I know I am truly lucky to have such a great support team.

Invisible Illnesses are still forgotten about.

On the outside, we look like we are fine.  But our bodies are fighting a war that in our lifetime we may never win. Today I want you to take just a tiny moment of your day and look up Lyme disease and understand what the symptoms are.  Maybe you know someone who has it, and today you will learn just a bit of what they are going through. Thanks for reading! – C

 

 

10 comments

  1. I was tested and found to be infected with Lyme also. I am self treating for chronic late stage Lyme with herbal antibiotics. Because I also have liver disease (Hep C) and cannot take antibiotics long-term as they damage the liver, I have to be very careful. Some of the treatments others had been trying for Morgellons such as de-wormers (ivermectin, etc.) were not a viable option for me. It is essential for me to stay on NutraSilver at this point. I know it works and has been preventing a most horrendous condition from escalating out of control. I don’t know if I will ever be “cured”, but at least I have found something that holds this mysterious illness at bay.

    • Wow, sounds like you have been through it all! I’m glad you found something that really works for you. One of the things that I know makes my life with Lyme easier is going out in the bright sunshine for at least 10 minutes every morning and just letting the sun really energize me. It’s a great feeling and I know the Lyme just hates it when I am happy.. so I say,” Suck it Lyme! I am happy in spite of you! “

    • No problem. I think sometimes I need to focus on it a little bit in order to bring light to the disease in hopes of a cure.

  2. Wow! That’s quite a story. I can’t imagine the fearful thoughts running through your head all that time. I am grateful you literally found your diagnosis. That’s just umbelievable

    • I am always learning about how far Lyme disease actually reaches. It isn’t just a disease of the muscles, the joints, ect. Because it’s a blood disease, it’s everywhere. In truth, I am scared often. But I am stronger than my diagnosis and I’ll keep pushing. Thanks for reading.

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