Thursday, June 3, 2010

Putting Up a Front--Ashley van Tol


I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.

Like any kid who grew up in the woods, I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either. I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck,” was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.

I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self-diagnosis of spider bite.

It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from any symptoms until I was 21. In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.



In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my innards. “Is this what jet lag was?” I wondered.

It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me an inhaler for asthma. Ah, it didn’t help.

Life continued on with me in a constant state of panic. What was wrong with me? My boyfriend’s advice--“Harden up Ash.” How very Australian of him.

On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.

In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!

My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.

I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.

At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.

Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.

My self diagnosis--Candida.

I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test. I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.

At this point I had added depression and fibromyalgia-type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.

Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.

I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable. In 2006 we went to El Salvador for two months. Maybe I got a new parasite or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected; I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.

I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.

In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through every day. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.

I nearly lost my husband because with no where else to find blame, I laid the finger on him. For some reason he stubbornly stood by me. I was lost.

That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink. Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!

In the fall I reluctantly went to see another doctor. It was getting too serious to ignore. She tested me for everything under the sun. I was surprised there was any blood left in me after all that! There appeared to be a handful of minor things wrong with me, including Lyme disease.

I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me. I stopped seeing her after two months.

It was four months later when I went to se a chiropractor that I learned about Lyme disease.

He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of the so called “diagnoses” I had received?

The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.

I had Lyme alright, and co-infections and viruses.

Would I change it if I could? No. Like many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.

Do I want to be healthy? Yes.

Emotionally I am in a much better place now than I have been in years. Physically I struggle, but there is a light at the end of the tunnel.

Ashley van Tol, California

6 comments:

  1. Ashley, thank you for your story. And you leave us with amazing hope, despite your poor health. You are an inspiration to all Lyme sufferers.

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  2. thanks for sharing Ashely...even the embarrassing parts! =)

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  3. Thank you Ashley! I'm in NE PA. I've had Lyme for over 30 years. Hearing other stories such as yours really makes me feel so not-alone. Looking forward to May 2011. diane

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  4. I think you make a good point about how we learn about ourselves during our Lyme battles. There is not a lot positive you can say about Lyme, but that is one.

    Thanks for sharing your story.

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  5. Ashley, thank you for sharing. Really nice writing too!!

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  6. Thank you for sharing your story, Ashley. It is helpful for all of us to read the journeys of others. Just seems to give us incentive to keep fighting the Lyme wars.. Hope and pray that your treatement gives you better health and the remission or elimination fo these nasty bugys.

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