The Struggle of Lyme

It was at Primitive Technology Weekend this May that the discussion was brought up.  Many of us would probably contract Lyme Disease at some point, especially considering our lifestyle.  Ben and I shrugged it off, however.  We didn’t think it was that serious.  Lyme just seemed to be something that you take medicine for and then it goes away.  No one seems to talk about it much.  Unfortunately, it is much more serious than all of us are led to believe.

As it happens, it is likely that at that event, one of us did end up with a tick bite and did contract Lyme.  And that person was me.  I’m one of the lucky ones to have had it figured out so quickly.

It started with panic attacks roughly two weeks later.  I’d never had one before, but I knew what they were.  What I didn’t know is that they aren’t supposed to last an entire day.  Following the panic attacks came the depersonalization, or feeling like you aren’t attached to yourself.  For me, I felt like parts of my body were disappearing, or were not attached to me anymore.  It also felt like I was watching a movie instead of living my life.  It was during the worst of these symptoms this years MAPS Meet occurred.  By this time I was in therapy regularly and taking medication for the anxiety.  I struggled to enjoy it.  I don’t regret going, I only wish I could remember more about it.  By the time we returned from MAPS, I had a whole slew of symptoms, from being excessively tired, having crying fits, head numbness, pressure in my head, twitching of body parts, double vision, hallucinations, loss of appetite, neck pain, muscle weakness, less exercise tolerance, night sweats, dizziness and so much more.  I was sent to a Neurologist who told me I was having migraines due to my anxiety.  I took medication for migraines, but that just made the panic attacks worse.  I had my blood work done 4 different times.  Everything came up normal beyond the fact that I was becoming anemic over time.  

I do not remember when Lyme came into my head.  I suppose I grasped onto it like a lifeline.  A faint possibility that I was not going crazy.  I was seeking out support groups online for some of my different symptoms, particularly the depersonalization.  It was on one of these sites that someone suggested that anyone with feelings of depersonalization get checked out for Lyme.  

Over time I became more convinced that I wasn’t crazy the more the doctor’s told me I was. One day I came across a list of Lyme symptoms and found that every single symptom I had happened to be on that list.  Then came the struggle to actually get tested.  

It was by this time that I had stopped mentioning new symptoms, though I would have a new one every few days.  It felt like everyone around me was thinking I was making up my pain, or thinking I should just get over it.  So I stopped talking about it and struggled through my life.  

The quest to get tested was a hard one.  I was told repeatedly that I just needed to see a psychiatrist, and since I didn’t have arthritis, I didn’t have Lyme.  I devoured any reading material I could find on the subject of Lyme and found that almost everyone who suspected Lyme were told to seek psychiatric help.  It apparently is so common, that those who are told that should count it as a diagnoses for Lyme.

I eventually did get tested, and unlike so many others (the testing for Lyme is horribly inaccurate), mine came back positive on the first try.  I have just started a two month course of Doxycycline and I have to see a doctor once a month to check out my progress.  If this doesn’t work, I will be given antibiotics through an IV over the course of a few months.  Here’s to hoping that wont be needed!   We will be trying some herbal remedies as well, but I wont list them here until I have tried them myself.  

I’d write more about the controversy surrounding Lyme, and perhaps someday I will, but for now I just want all of you out there reading to know how serious it actually is.  Lyme can turn your life upside down.  It can make living a struggle.  And the bug that causes it is typically no bigger than the period at the end of this sentence.

I believe that most reading this probably spend a great deal of time outdoors.  I urge you to be careful.  Do tick checks, twice a day if need be. You dont have to give up what you love, just be aware.  If you get bit, don’t make the mistake of thinking that just because you didn’t end up with a rash, you don’t have Lyme.  The rash occurs in less than 50% of the victims and it is rarely in the shape of a bulls eye.

 I was told by some fellows lymies that I was crazy for wanting to continue on spending my time in the woods, working on primitive skills, whenever possible.  Not crazy.  Just wanting to live.   

– Miranda Vivian

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5 Comments

  1. Bellen said,

    August 24, 2008 at 1:04 pm

    I’m sorry you’ve had to deal with Lyme disease. I’m from Connecticut (disease named after the town of Lyme, CT) and it’s still hard to get tested unless you have the bullseye rash or arthritis symptoms as you pointed out, not evident in a majority of cases. Pretty stupid.

    To prevent, do the normal stuff: wear light colored clothing so the ticks show up, tuck long pants into socks, wear long sleeved shirts and check, check, check. Also, if possible, remove your clothing BEFORE entering your dwelling – I’ve found wandering ticks on the bathroom floor. Have someone check your back, crevices where you have skin folds especially the genital area if you wear shorts, and very thoroly your head – short hair or pulled back hair and a hat are helpful.

  2. heather said,

    June 6, 2010 at 11:48 am

    Hi There,

    Thank you for your blog! I know first-hand that my depersonalization symptoms were lyme related.

    I actually created a website to help people! http://www.ladderbridges.com

    I really hope this helps people. I never want people to be in pain like i was

  3. Dana said,

    May 11, 2013 at 9:16 pm

    Miranda! How do I get in contact with you? I have had these EXACT symptoms of lyme (mine weren’t typical either) and am still dealing with them. Now I am trying to heal! I am very curious to see how you are doing and I hope you have recovered completely by now. I am very interested in your treatment as I am desperate to get well!:)

    Do you have an updated email? Please respond soon. My fingers are crossed.
    Many hugs,
    Dana

    • angi said,

      October 1, 2013 at 12:21 pm

      Hi Dana,

      Its now Oct 2013 & my teenage relative also has the same lyme symptoms. If you want to get in touch, email: andread999@gmail.com

      .


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