Posted 6/25/2014 9:21 PM (GMT 0)
I don't know where to start, so I guess the beginning is best. This week last year, I went to a family reunion/vacation in the Houston TX area. I am a born and raised Las Vegas Native, so Texas has always been like visiting a different country to me. Through the years I had become less worried about nature killing me and learned to love my time there. Tiny frogs, squirrels, deer, lakes, TREES. This trip was like others in every way. But I learned to zone out the constant bugs of prehistoric size flying around everywhere. 2 weeks after coming home I got sick. Sicker than I have ever been in my life. After describing it like the flu in the summer a friend said it could be West Nile and on day 6 I finally managed to get to my doctor. By this point, I had major cognitive issues - could not tell time, couldn't finish a sentence, couldn't remember what happened seconds before. The headache was the worst. Light sensitivity, sounds were like a whole body irritation. Looking back, I felt like I was dying and realize now I am lucky I didn't. Clocked a 102 fever at the doc and he said it looked like West Nile, there was nothing they could do for it, gave me a sheet of lab work and a 10 day antibiotic and sent me on my way.
So life was hell for a month. And I just pushed through thinking I would just get clearer and clearer. I had endometriosis until a hysterectomy at 29, I know how to push through. Then, August 21st, my birthday last year, while walking into a convenience store with my family, suddenly I was back to day 1. Lost hearing in one ear. It's like I can hear, but my brain only comprehends it as static. I can't see out of one eye. Same thing. The eye can see, but I can't make sense of the images coming in. Headache, fatigue, fever... Spent my birthday in bed. Spent that whole week in bed. I'm still thinking, "Whoa. This West Nile stuff is nasty!"
September, the foot pain started. Not being able to put 2 and 2 together, I start telling hubby that I think I'm getting arthritis in my feet! At 31 years old! They hurt when I woke up before even putting them on the floor, and once I stood up I would fall over it hurt so bad. Still foggy, still having problems with fatigue. Going shopping put me down for days.
Flash for ward to October. My best friend is in town to get married, and I get hit again. Still thinking it's WN, but at this point I realize it is most certainly not getting any better and it's starting to mess with my ability to live my life. I made it to the wedding. The rest of the week I was in bed.
So I go back to the doctor to follow up, because at this point something has to give. I can barely feed my child, let alone manage a household. And it's IN MY BRAIN, so I am more than freaked out. I wanted to make sure it really was WN, and deal with the ongoing symptoms. Man, I thought being sick was hell... What happened next was the beginning of the fall. "They never pulled the West Nile test. Everything else is here. They must not have seen it. I'll send you back and we'll see what's up." More than upset, I go take the test. Another week. Go back. West Nile is negative. Time to see the Infectious Disease guy and a Neurologist because it seems to be "encephalitic". Now I'm just freaking out.
First up, the neurologist. Brain scan. All clear. Sigh of relief. There aren't any actual bugs crawling around in my brain eating it, because that is how it sure feels! Whew. She wants to shock my nerves or something, I respectfully decline and ask based on the info available, what she thinks it is. She says "viral menengial encephalitis."
Onto the ONLY infectious disease guy in Vegas... I tell him what has gone on, and the moment I said I got sick 2 weeks after Texas he goes to town on the lab sheet. Did get bit by ants and had other bites from I don't know where. At this point, with a swollen brain 6 months later I do not recall a bullseye rash or any tick. The massive test comes back with a borderline positive for lyme. Jubilation! It has a name. This skin crawling, bone crushing, brain eating thing inside me has a name! And it's a bacteria and can be CURED. Went to "confirm" with the Western Blot and it came back negative. FML. It is now January and all the ID guy wants to do is take another test and come back in February. The failure from here was mine. I gave up. He told me they may never find out what it is. I'm so lucky to be as able as I am in my life after a hit to the brain like I had. And it sucked. But I started making the best of it and learning to live diminished. My energy diminished, my intelligence diminished, waiting for the next flare up to rear it's ugly head. All this time researching this lyme stuff, learning how it's sneaky, living the symptoms of late stage lyme. And still, I just thought this was my life now.
This June, I had a sinus infection that I ignored for a little too long and ended up on amoxicillin for it. 2 days in, I felt great. So glad I was getting relief in my cheek. Then WHAM.
Full body pain, can't move my neck at all, the bone pain, headache, light sensitivity, brain fog, can't find words, using the wrong words. And I remember reading about herxing and it all comes crashing in. I have lyme. A year from infection, undiagnosed, untreated Lyme Disease.
I started poring over all the information here and finally went back to my original doctor begging for treatment. I tried to log on here and had trouble getting the verification email and swear to you cried for two days over it. I expected a fight. But I got my good 'old doc back. I was so mad that he didn't send me to the hospital. In retrospect, he likely saved me more damage with that original perscription "just in case." But he listened. And without any of the tests or anything put me on doxy with STRICT orders to come back in 10 days and call if anything gets rough.
Thanks to these boards, I knew what to expect. The first day on doxy, my left ankle felt broken. The first Epsom salt bath made it vanish. Yesterday, I threw up the doxy. Today, I ate with it at the advice here and am doing much better. I am no where out of the woods, though.
I am afraid the oral won't work. I thought a month of abx and I'd be home free, but with how long it's been and how bad my brain has been hit I'm not so sure. My perscription is for 30 days, on top of the 10 days of amoxicillin. And only 100 mg twice daily. I felt like getting on SOMETHING was such a victory after this year of hell, but I feel like the battle is just starting. Should I trust my doc or is oral doxy already a sign that he doesn't know what he is doing?
So before I get myself all upset, I just wanted to say hello and thank you all for getting me through this far. I will be around and posting for sure and keeping everyone posted. I have been sending so much love to you all over the past week. Hope you are all having a "good" day.