Flutterby Haven News

Lyme Disease - My New Normal

Saturday, December 19, 2015

It's official - I have Lyme disease. I can't even remember making the post before this one on Nov. 10. This is my new normal. My brain is fried from these little spirochetes.

Life is not much easier now than it was before I had a diagnosis. The hospital gave me two weeks of antibiotics but since I'm a traveler (and a poor one at that) with no insurance (aside from Medicaid which isn't useful outside of the state you live in) finding a doctor to follow up with has been a headache. I admit, I felt pretty good after I made it through the antibiotics but in the past few days I find myself revisiting some of the early symptoms that I initially ignored. Thankfully I'll be back in MD in couple weeks and can go see my regular doctor and start testing for coinfections as well as treating the Lyme itself again.

See, I was familiar with Lyme in dogs but never in people. I have never met someone who told me they had Lyme disease. But guess what? It's WAY more common than any of us think.

I will apologize again for the pictures I am about to post but I feel it's important to get it out there. Maybe someone else will realize they are sicker than they think and get treatment before they end up where I am now.

Black Legged ticks are the ticks that cause Lyme disease and coinfections. Lone Star ticks have their own problems.
Around week 2 of the Maryland Renaissance Festival I pulled a tick off my thigh. Little did I know that was not the only tick on me or that the one that caused the Lyme was likely so small I wouldn't have seen it anyhow. Let alone the fact that it attached somewhere in my groin/ pubis area - an area that when at a Renfest is not often in a mirror. Showers are, for me, a generally hurried and fast procedure when I'm using a public shower house. I'm also prone to bizarre bruises that I don't know how or what caused them so when I saw this on myself I assumed it was a bruise. That I had run into a corner of a table or counter. It didn't hurt really. The skin was weirdly sensitive but not overly painful or itchy.
A classic Erythema Migrans bullseye rash. A sure sign of Lyme infection
My Erythema Migrans - looking nothing like the classic rash.
I ignored it mostly. I did ask a couple of other ladies who I happened to run into in the restroom at faire what they thought. Thank the beejeezus that the Rennie community is an open bunch. No one ever blinked an eye that I was essentially showing them my crotch. This picture really doesn't show how dark the rash was, or how big it got. It looked like a giant bruise that eventually wrapped around my hip.

But then other symptoms started. I was very tired all the time. I felt like I had the flu and since the flu was running through our community by then I just figured I was sick like everyone else. How wrong I was. I was having neck and shoulder pain that I attributed to fever and my van being unlevel so I moved my bed from the dinette to the upper pull out to have more room. I was still achy.

I started having urinary incontinence which I attributed to having to use public porta-potties. I have a tendency to hold my urine until I HAVE to go. No longer was this an option. By the time I knew I had to pee, I had to GO RIGHT THEN.

I was having major shifts in my personality, tolerance of other people and my ability to follow conversations. I am now snapping at people when I don't mean to. Even my cats have been snapped at and I love them more than anything.

The left side of my face started randomly being puffy which I attributed to either sleeping mostly on that side and waking up puffy and then to a bug or spider bite. It would randomly tingle.

I was having severe headaches that I attributed to being dehydrated.

My spine, hips and knees were in terrible pain which I attributed to getting old, falling out of the van and the amount of walking I do at faire.

I was more clumsy than usual. I even fell out of my van causing a bruise to my leg that is still there today (after nearly 4 months)

My anxiety and panic attacks were happening more frequently which I wrote off to the engine troubles.

I ignored all of these symptoms because between working the weekends at MDRF, not having readily available transportation, being stressed about my van not running and having to get to Louisiana for LARF (which started 2 weeks after MDRF ended) - I had enough on my plate. Add in my intense dislike for doctors and you have a very nice host for Lyme to run rampant.

The last week of MDRF and the two weeks prior to LARF (Louisiana Renaissance Festival) were very hard. I barely had the energy to pick my head up let alone do anything else. The drive down here was miserably uncomfortable. Once we got into LA I had to hit the ground running because I was already behind schedule and had to meet my new boss and get work straightened out for the 7 week run of that festival.

The day we got here I was out on site for about two hours when my entire face went tingly and then the left side simply stopped working. Half of my face was paralyzed! It went away until three days later when it stopped working as well as most of the muscles in my face. I couldn't squint my eyes or scrinch up my face at all. I worked Saturday at faire and immediately went to the hospital.

Left - how I looked when I went to the hospital the first time. Lots of facial edema. The right is two days after I started antibiotics.
My first trip to the ER was to North Oaks hospital. The doctor came in, sat down and started asking me questions but quickly turn his attention to my friend's belt buckle which was clearly more fascinating than my health problems. The doctor never dd a physical exam. In fact he asked me if my lymph nodes were swollen and told me to check them myself and let him know. He then looked in my throat from two feet away and promptly diagnosed me with Pharyngitis (even though a sore throat wasn't one of my many complaints) and generalized anxiety disorder. Gave me a prescription for Cephalexin and Ativan and sent me on my way.

So - I worked Sunday and was too tired to deal with going to another hospital Sunday night but went first thing Monday morning to St. Tammany Parish hospital. They drew blood and gave me an injection of Depo Medrol (which I had a horrible allergic reaction to), prescribed some pain killers, a nausea med, and 2 weeks of Doxycycline and told me my Lyme tests wouldn't be back for 2 weeks. I was supposed to follow up with my regular doc to have another Lyme test drawn to compare the results but as I said - I'm out of my home state and dirt poor plus extremely busy so I have yet to do that.

What the hospital didn't warn me about was what's called a Herxheimer Reaction. Which is where the bacteria being killed off release a bunch of endotoxins into the body which increases the symptoms. It broke both my brain and my body. I was herxing so horribly that I was hallucinating my recently deceased cat, Gobie. To the point of nearly swearing that he was real. I hallucinated friends speaking badly about me and went into a full blown, hyperventilating panic attack. I also started breaking out in a huge rash that covered 90% of my body. Add that to the fact that the antibiotics made me extremely pukey and life was pretty daned miserable for a bunch of hours every time I took a pill.
Herxheimer Reaction rash. It spread everywhere - neck, face, legs, elbows...
I just got access to my blood results online a few days ago and what do you know? I have Lyme disease. Not only do I have Lyme but I tested positive for 8 of 10 bands (you only need to test positive for 5 for a clinical diagnosis) 

At least now I know. You can bet that as soon as I get home I am making a doctor appointment to have blood drawn to test my levels and to check for coinfections. I'm also looking into way I can help with Lyme education, treatment and prevention as I wouldn't wish this disease on my worst enemy.

Here's hoping 2016 is better than 2015 was because this has been one miserable year in my world. 

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Always remember - Pike - Passed away 2010 surrounded by love and light.

Always Remember - Gobie - passed away 4/25/15 surrounded by love and light.

Always Remember - Cuda- passed away 5/19/15 surrounded by love and light.

Always Remember - Anchovy - passed away 9/12/16 surrounded by love and light.

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