I’m not sure when I contracted Lyme – it could have been while growing up, it could have been later on in life. Not all bites result in the tell-tale bulls-eye. However, judging by how long I’ve been symptomatic, I’ve had it for close to a decade, it's just in the last year or two that things really started to get wacky.
2010 (and going backwards)
I went in for a follow-up appointment with a doc in April. I had only lost 13 lbs since February. I was down to the lowest weight I'd been since high school - and down nearly 50 lbs from the heaviest I'd ever been.
In January I experienced some seizure-like episodes. One neurologist says they weren't really seizures because I was aware of them while they were happening. No theory on what it was or why it was happening though.
2009
Back in December (when things REALLY started getting frightening) I noticed that I was having a lot of difficulty with spelling - which is something I was normally quite accurate with. When speaking I couldn't think of the right words, even when they were literally right in front of me. If it was late and I was cold my speech would start slurring. My hands, feet, & legs started turning blue - not just when I was exposed to the cold but heat as well. I get some numbness and tingling in my arms and legs. My primary care doc said I needed to see a neurologist. The neurologists - well, I won't go there right now.
I had memory loss. Not just the "What did I come in here for again?" kind either. I've forgotten huge chunks of the last 10 years or so. I know this because every now and again a wisp of a memory will flutter back like a butterfly. Sometimes it stays and other times it flutters away again. That could be because of age. Except that at my age, I doubt I'd forget that my grandfather passed away earlier in the year. Yeah - for about 14 hours I thought that Papa was still alive and kickin'. Standing there washing a dish and WHAM! - holy coconut oil, Papa's gone to the big dessert bar in Heaven! Not quite the most comfortable of experiences. Shortly after that I couldn't figure out how many days were in a week. I was (somehow) convinced that there were 8 days in a week. The rest of me knew this was incorrect but I couldn't figure out what was going on. Even looking at a calendar and counting the days was unhelpful! I think I now know what amnesia patients feel like as they regain their memories and I think I now know what early Alzheimer's patients feel like when they notice something isn't right but aren't quite sure what.
I was also freezing all the time. 2-3 layers of fleece and sweats, extra blankets, those nifty heat-packs that you can toss in the microwave, and a beanie. That was when I was indoors, too. I know I'm a cold-blooded woman - I always have been. But this is getting a bit ridiculous.
Exhausted. Absolutely.no.energy. I didn't do anything all day except read. But I was exhausted. I'd be up until 2, 3, or 4 in the morning but need to sleep for 10-12 hours. Some wondered if it was depression. Makes sense given the turn my life took. Except I wasn't depressed. I was, however, getting frustrated. I'm too young to feel this old.
Back in early September I had to prep for a diagnostic procedure. Sparing you all the details, suffice it to say that my body did not tolerate the prep and the diagnostic didn't happen. What did happen though is dizziness, vertigo, memory loss, disorientation and similarly frightening symptoms/reactions. One theory is that through the rejection of the prep I just royally messed up my system. Ever seen a bobble-head doll bobble? Imagine feeling like that doll on a constant basis. I had to take Meclizine or Dramamine just to ride to doctor appointments. I've basically felt intoxicated for the majority of the last year or so.
Back in July I started getting these pin-point headaches. It's just a spot on the top of my head that feels like I've been stabbed with a knitting needle (Yes, I know what that feels like because I accidentally stabbed myself in the leg with one when I was 12). At first I thought they were just tension headaches because they'd start around 1700 and last until I fell asleep. When I woke up, they'd be gone until 1700 rolled around again. Then in August/September they'd start around 1300 and last until bedtime. One morning in October I woke up with it and it has never gone away. It's not a migraine, a hunger headache, a 'junk-food' headache, a stress headache or any variation of the above - I've learned the difference over the years. I saw a poster in one of the many doctors' offices I've been in that detailed various headaches and what fits best is "cluster-headache".
You may be wondering why this would be concerning - just take some Tylenol or another drug and move on. It's concerning because on a scale of 1-10 with 10 being the worst pain I've ever felt, these were at a 7. Tylenol wouldn't touch it. My migraine medication wouldn't touch it. Tried some heavier stuff but that just made me loopy and goofy but didn't touch the pain. Why put my body through the toxins of drugs that aren't going to provide any relief? Another concern is that when these headaches get worse they spread across the top of my head and forward in this web-like form. Then my hearing and vision start to dim. One second I can hear and the next second I can't.
Throughout all of this time I have seen 4 neurologists (although one was just for a diagnostic), 2 ENTs, an oto-neurologist, 2 primary care physicians, an acupuncturist (who was the first to suspect Lyme - and during the first 5 minutes of intake, too!), and a naturopathic doc. VNG (I think I actually experienced this twice), EEG, EKG, EMG, MRI, CT, and a slew of other alphabet tests, countless blood-draws, and still no answers. One primary care doc ordered the Lyme titer, which is known for being most inaccurate. Then she ordered the correct test but used a lab that is known for giving incomplete results. You might be wondering why I still suspected Lyme. Because it's the only answer that FIT. As one neurologist stated "There's nothing that is structurally wrong. You don't have cancer, MS, Parkinson's, or any other nasty illness. You just have a hyper-sensitive nervous system."
Really?! The fact that feather-light touch makes me cringe in pain, my diet is down to eggs, bread, potatoes, tea and water because I react to nearly everything else. I can taste food going bad weeks before it actually does. I can't watch television because it makes me woozy (I can sometimes watch things on my laptop - my thought is it's smaller, not as loud and so therefore isn't nearly as much stimuli). I can't talk on the phone, attend church or other indoor functions, or anything else that's even 'remotely' loud because it sends me into a tailspin and I'm down for weeks. Most perfumes and cleaning products close my lungs up. Yep, I have a hyper-sensitive nervous system.
I was also handed a variety of prescriptions - some that were even known to cause allergic reactions in patients with one of my drug allergies. Most of those I just used as bookmarks.
Really?! The fact that feather-light touch makes me cringe in pain, my diet is down to eggs, bread, potatoes, tea and water because I react to nearly everything else. I can taste food going bad weeks before it actually does. I can't watch television because it makes me woozy (I can sometimes watch things on my laptop - my thought is it's smaller, not as loud and so therefore isn't nearly as much stimuli). I can't talk on the phone, attend church or other indoor functions, or anything else that's even 'remotely' loud because it sends me into a tailspin and I'm down for weeks. Most perfumes and cleaning products close my lungs up. Yep, I have a hyper-sensitive nervous system.
I was also handed a variety of prescriptions - some that were even known to cause allergic reactions in patients with one of my drug allergies. Most of those I just used as bookmarks.
Here's my thought on drugs: I will use medication to treat a known ailment. An example being thyroid. I have a funky thyroid. Medication makes it function properly. Totally willing to take that medication. I will not take something 'just to see if it works' and is therefore a diagnostic tool. Throughout most of this experience I've come to the conclusion that many doctors (note: I did not say all) are nothing more than legal drug dealers anymore.
Most of these experiences have just manifested over the last couple of years. The sensitivities - for as long as I can remember. People use to think that I hated having my feet tickled as a kid when in reality it sends hot searing pain all the way up to my head. Folks thought I was just a picky eater. Since I've never been one who was concerned about my weight, it isn't likely that I'd make myself vomit the meal I just ate. Many foods just don't settle.
A person really shouldn't have to go through the experiences I've been through just to find out what is wrong.
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