I’ve been going through this illness for almost 3 years, and my symptoms keep increasing. I am 6’ 7” and weigh only 130 lbs now. Some nights I’m not sure if I’ll wake up due to my breathing. Here is my timeline:
July 10, 2004
Driving home from a trip to Montana and Wyoming, within minutes I felt lightheaded/woozy. Same time, felt a slight tingling in my bladder area and felt as if I was going to pee my pants. Had to pull over to go to the bathroom and have someone else drive. When I went to eat something, for some reason I just didn’t have an appetite to eat. The woozy feeling never went away, and even when I woke up the next morning, I felt the same. For the next few months kept waking up in the middle of the night with the urgent sense to urinate. Also felt chilled like had a fever. It was summer, had to curl up in a blanket to feel warm. When I got a thermometer month later, temperature was actually lower than normal around 97.0
July 2004 through November 2005
Permanent feeling disconnected. Would get more intense at night to the point where I would start to feel really woozy. There were times it was worse, but it never went away and felt like I was taking Benedril all the time (physical feeling, not a mental disconnect).
Got a stiff neck that lasted for the next 10 months. Also got this twitch in my forehead above my right eye that lasted for an entire week. When I did eat, I always felt like there was a slight pressure in my stomach like I got full really quickly.
Twitch in my right eyelid that lasted an entire month
November 23, 2005
I suddenly felt worse this day than I ever had. I felt lightheaded and I lost my appetite again even worse
Previously wooziness would get worse at night, but in December, started to wake up in the morning feeling just as bad as when went to bad. Most days driving to work, wasn’t sure that I was going to even make the drive because I felt as if I could pass at times (I never actually passed out). Since started in 2004, felt tired and fatigued most of the time, but in December 2005 is when I started to feel so sleepy in middle of day that I could barely keep my eyes open at times. I would sleep a full 9 hours on the weekends and still feel like I didn’t get any sleep (it felt at times like I was on sleeping pills during the middle of the day). Not only did it seem like my vision was getting blurry, but I also started to notice these dark floaters that covered my field of vision.
January 16, 2006
Driving home at night from work, and within minutes it felt as if my right foot and calf were going numb. When I got home and out of my car, I felt like my right leg couldn’t hold my weight, and I limped a little. For the next 3 weeks, it just seemed to get worse every day. Mornings I would have more strength, but by nighttime, would barely be able to walk. It started to subside after about 3 weeks.
Muscle weakness in my legs came back again after subsiding for a few weeks. I began waking up in the middle of the night really dizzy and feeling like I was going to pass out. I also started to get mucous in my stools at times (still happening every 2-3 weeks)
Started to lose weight in July because I couldn’t eat much. This is the month also when I started to feel so lightheaded and woozy all the time that I didn’t feel safe to drive anymore. Started staying with my parents, and they drive me to and from work (I have not driven ever since then). Not only was the muscle weakness in my legs worse by now, but started to feel pain in my legs by the end of the day (this was still tolerable at this point). I also started to feel similar feelings in my arms that happened in my legs.
I had an attack on my legs one Sunday where within minutes I felt as if my legs were going paralyzed. Ever since that day, I’ve had to walk with a cane. This was also the month where I started to have difficulties swallowing. By the end of September I had dropped weight from 150 lbs at the beginning of July to only 135 lbs by the end of September.
The pressure in my head worsened by this time, and I had to take ibuprofen daily. The pain in my legs would also last from 2 to 3 hours almost nightly. My temperature really started to fluctuate a lot by this time. It was still below normal for most of the day, between 97.0 and 97.7, but it would shoot up within 30 minutes at times as high as 99.2, and I would feel like I was radiation heat, especially my head. Swallowing difficulties still worsened and had difficulties burping.
Started to feel burning in my chest, developed acid reflux (famotidine that I started taking in December alleviated this). I also started to feel burning sensation in the back of my head, and it went down my spine; this happened several times after my head pressure would get back and lasted into December.
Started Ceftriaxone antibiotic treatments for Lyme Disease.
Legs started to improve and felt stronger at times. The pain that came on in my legs previous year didn’t happen anymore. I also stopped waking up in the middle of the night feeling dizzy. Head pressure also seemed to subside. End of January, my swallowing seemed to worsen even more.
Had to stop antibiotic treatments due to developed an allergic reaction. Middle of month, my arms started to get weaker and arms started to feel at times that they were going paralyzed. By the end of one of the weeks, my arms were so weak that it was very difficult to write and by the end of that Friday I could barely hold up my arms. Near end of month, I was in the car going home, and there was a warm tingling sensation that came over my chest. Within minutes, I started to have difficulties breathing (it felt like I was struggling to breath in as if something was happening to my diaphragm). Muscle twitching throughout my body started this month too.
Swallowing difficulties still worsened. By the end of some days, it felt as if my mouth, tongue, and throat were so weak that I could barely get noodles down. At times my tongue would feel a similar sensation that my legs and arms did.
Head pressure and lightheadedness started to come back to the levels where it was at the end of 2006. Still some difficulties breathing.
Tuesday, May 1, 2007, I was sitting watching TV when I felt warm tingling sensation in my chest (similar to what happened previously). It also went as low as my abdomen, and this is when I started to experience a worsening in my breathing. This started to happen daily after this, and during many of these “attacks” my body would start to shake really bad. Sometimes I start shaking, then break out into a sweat, then when it feels like it’s subsiding a little bit, I start to feel warm, and my temperature goes up 99.1.
Saturday, May 19, 2007, mom was driving me to work when felt like I could barely get a full breath in and felt really lightheaded, so she took me to the emergency room. I’ve avoided going to the emergency room no matter how bad I’ve felt, but with my breathing and chest pressure, I wasn’t sure if this was something that could wait.
I'm having a lot of difficulties breathing, swallowing, eating, and I break out into sweats at least once a day after my temp goes from below 97 to above 99.