I wanted to do a blog post while I have some energy because who knows how long this “feeling good” spurt will last today! I’m blogging this for a few reasons; First, It’s really difficult and exhausting for me to speak. So instead of explaining what’s going on to each and every one of my family members, clients and friends multiple times a day, I figured it will be best if they can just read about it here. I also plan to move this to a personal blog, but right now, my photography blog is the only blog I have up. Secondly, I also hope this might help someone who may have had these same symptoms and are having a difficult time getting an accurate diagnosis. Lyme Disease is often over-looked unless your doctor is a Lyme Literate Doctor (LLD). Lyme disease infected ticks are predominately found in the North East US, South East and Northern California and some areas in Oregon. Don’t give up when everyone tells you that “you’re fine” and you don’t feel fine. Be PROACTIVE about your health because you know your body. Better than anyone else does!
The last few weeks and days have just been crazy. It all started about 6 months ago in December when I started noticing that I was starting to feel more and more fatigued and achiness throughout my body. Maybe once a month, I would come down with “something”. Sometimes colds, sometimes just flu-like symptoms that never progressed to vomiting or diarrhea, but mostly just a general feeling of poor well-being and extreme fatigue. I attributed it to the stress of being married to an entrepreneur and the life that comes with start-up companies. I thought that maybe it was moving from San Diego to Seattle. I also felt that my fatigue and many other symptoms were the symptoms of what I call, “The big, bad beast” (depression), something that I’ve had since my teenage years, but had recently gotten much worse in the last few months. I developed night anxiety, to the point of having to take Xanax, 3-4 times a week. I really didn’t want to become dependent on pills though so I haven’t had a refill in about 3 months.
It’s irritating to myself AND to everyone around me when I would say, “I don’t feel good”, or “dangit, this [insert body part] really hurts”. I hadn’t gone to get a well-ness checkup since all this started because we don’t have insurance and I wasn’t dying so I just dealt with stuff. My husband loves me very much, but when the last time I was sick, he said, “What’s new? You are always not feeling good”, that hurt a little. I told him that it hurt my feelings, but the poor guy is my sounding board 90% of the time. So I get it. BUT, my symptoms are real and all I want is to have my energy and vitality back. I don’t want to be bed-ridden and I HATE having to ask for help. So I didn't complain as much, I just learned to deal with it in silence, as much as I could.
After I returned from New Jersey where I photographed a wedding a few weeks ago, I had been particularly tired. That started on June 3rd. I attributed it to the fact that I was tired from traveling. On June 6th, I woke up with a sore armpit. I felt it out and found a lump under my skin that hurt when I pushed on it, I later found out that it was a swollen lymph node. I’d never experienced swollen lymph nodes in my armpit before so I thought that was strange. That same day, I found myself even more fatigued. I felt like I had taken sleeping pills all day. Running into walls, feeling dizzy, and straight up just didn’t have a desire to do anything that involved exertion or thinking. My voice had been pretty hoarse the last week or so. So I figured I was just coming down with a cold. The next day, my joints hurt. I had a low-grade fever though, so I thought my joints were just achy because of that, even though it was more like shooting pains in my joints, It wasn't horrible pain. Over the next few days, I developed worse body aches and joint pain, still had the fever, but it was an erratic fever, going up and down every couple of hours. Some of my fingers became swollen, stiff and difficult to use (I couldn't do a simple thing like open a jar of jam). My back hurt, my head hurt and I was having a hard time staying asleep at night. Symptoms persisted and 10 days later, I still had the fever, but then I started getting tingling in my toes and face and then my left eye socket started to hurt and my right eye was twitching. The day after that, I started feeling less balanced when I walked and started seeing floaters along with a black object in my right eye’s peripheral. So I decided it was time to do some real research on my symptoms.
I came across many, many things because well, I had many many symptoms. I came across Lupus, Fibromyalgia, Chronic fatigue syndrome, arthritis, and Lyme disease; the list went on and on. I took each possible thing into consideration conservatively. Lyme disease seemed to fit best with my symptoms, and I had pulled a tick off of my leg the day that I photographed a wedding in New Jersey. I didn’t even know that ticks could give you Lyme disease or what ticks even looked like. I asked my assistant what it was and she told me a little bit about ticks and Lyme the night I told her that I pulled one off of me. I said, "Lyme disease from what?!", but I didn’t get a bulls-eye bite/rash and I wouldn’t be getting these other nerve symptoms this early on if I was bit in Jersey. So I figured it couldn’t be Lyme.
Because I don’t have medical insurance yet, I really didn’t want to go see a doctor. Then, John read an article to me about this doctor’s practice in the mid-west who doesn’t deal with insurance companies at all and just charges patients a monthly membership fee that includes seeing a doctor anytime you want, however many times you want. I loved the concept of skipping the red tape that comes with insurance companies so that the doctors can focus on effective care of their patients. So I did the research and found a doc’s office that does that exact same thing, right here in Bellevue, WA called Qliance (Love the doctors and staff here by the way). I gave them a call after having the fever for 11 days and just feeling worse than ever. A few hours before my appointment the next day, I couldn’t get “ticks” off of my mind. So I found myself looking at tick bite pictures. As I scrolled through, I spotted a picture of a Lyme infected tick bite that looked EXACTLY like this strange bite that I got back in November when I went to Atlanta, GA. I had completely forgotten about it. I also remembered that I got flu-like symptoms a few days after I got back from Atlanta. I printed the picture and took it with me to the doc’s and explained my findings. My doctor spent a good 90 minutes with me going over all the details and reading my symptom journal entries that I had been documenting for a few weeks and asking me the same questions a few times just to make sure she was clear. I don’t ever do symptom journaling, but I felt that I needed to be proactive about my health so that I could get to the bottom of this stuff once and for all.
My doctor decided that she wanted to do 3 blood tests. A Lyme Disease test (EIA w/reflex-CB), A complete CBC, and an ESR (which measures the levels of inflammation in your body). She told me that she would likely start me on treatment for Lyme Disease before the Lyme test comes back just to be safe. She told me that she would call me tomorrow when the CBC comes back.
That night, I woke up with the right side of my body being tingling. My toes kept falling asleep and my right arm went numb. I thought I might have slept on it, but I didn’t get the feeling back in my arm for 20 minutes. The next few hours were just WEIRD. That’s the only word I know how to describe it. It’s like I was outside of my body looking in. I couldn’t focus on doing any one thing for longer than a minute, I was running into walls, seeing more floaters in my vision, sometimes seeing double, dry eyes, foggy vision, I would walk into a room not remembering walking into it or why I was going there. Just utter confusion. I talked to a few people on the phone that morning while all this started to get really weird and I found that I was pausing after almost every word because I couldn’t think of the words I wanted to say quickly enough. It was SO exhausting to speak. Then it got weirder. I went to sit on my bed and just rest for a bit and then Charly came in and said, “Mommy!” really loud and I snapped out of it. I had been sitting there staring at the wall for 15 minutes without even realizing it. That’s when I got scared. I called John and he told me to call the doctor. I COULDN’T do it! All I remember feeling was frozen. Like I had seen a ghost and couldn’t move. My mind was racing but I just couldn’t bring myself to physically call her. I guess it was a feeling of paranoia? Just weird. So lucky for me, my doctor called me while I was in this petrified state of mind. She told me that my CBC and ESR came back okay in the higher-averages, but that she wanted me to start treatment for Lyme Disease. She explained that those tests don’t always have to come back bad for you to have Lyme, she just wanted to rule out other possible things with those tests. She then asked me how I was feeling and I did the best I could to describe what was happening. I don’t remember exactly what I said to her. I just remember telling her that I was scared because I was caring for my kids and I was worried that I was going to zone out again. She told me that she wanted someone to drive me in right away to get an anti-biotic injection because she thought it sounds like I was in stage 2 Lyme with the new neurological symptoms.
So I got the shot, I think Bacillin, in both butt cheeks and later that night, I had a shooting pain in my left calf. Luckily, when it got really painful, it was time to go to bed so I didn't need to use it. So I laid down and was able to eventually fall asleep. I went in today for my second injection and they told me that the leg pain means that they probably hit a nerve. The pain wasn’t as bad as the night before so I gave them the okay to do the next round of injections. When I got home, I made some breakfast and out of nowhere throw up. I vomited over the course of about an hour. Called the doc and they think that it’s a side effect or the combination of the injection and the Doxycycline that I'm taking orally every day. I’m still nauseated but at least the vomiting has stopped. I’m having some pretty trippy eye stuff going on with my eyes today. The floaters are black now instead of white and there are more of them and they are so distracting. Feels like I'm going cross eyed because my eyes keep trying to focus on the floaters. I’m pretty weak and shaky today and it's still pretty difficult for me to talk and focus.
So one thing I've learned this far is that Lyme disease is no joke, especially in the later stages. When you start to exhibit nervous system and neurological symptoms, that’s when the disease has spread. It’s called, “Late dissemination” just a fancy word for “late stage Lyme”. Anyway, if I do actually have Lyme, I’m glad that it was caught before the really scary stuff like facial paralysis (bell’s palsy), heart attack, meningitis, and many other, sometimes permanent problems. I’m really hoping that my speaking thinking and vision get back to normal and that I don’t develop Chronic Lyme, but I guess we shall see and cross that bridge when we come to it. I’m officially super tired after writing this. Everything takes me twice as long to do, so I apologize for the typos! Don't have the energy to go back and edit. I’ll do another blog post soon, when I have more info!