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Lyme Disease Message Board


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New board member
Jun 25, 2005
Hi everyone,

I've looked at this board for a week or so and figured as long as I've started to respond to strings, I should say hello and introduce myself. I'm a graduate student (and in the military). I'm 38 y/o, but have been having symptoms (possibly of Lyme?) for 5.5 years - since at least late 1999.

First noticeable symptom was memory loss & mental fogginess that I'd never experienced before. I'd start something I'd done for years, but then blank on how to finish it. It was scarey, so I went to an endocrinologist in early 2000. I have a very strong family history of hypothyroid disease (though my labs are all normal now). He offered a neuro referral, but I didn't think it was that bad and declined. I chalked it up to stress (very stressful job). Fortunately, I have my medical record and there is a note from the endocrinologist on this complaint to back up my claim of this symptom. I was already having bladder problems (with a "relaxed" bladder - cystocele), as well as chronic constipation, but dismissed these as just bad luck, diet related, or d/t lots of exercise. Later in 2000 I had foot surgery and the podiatrist asked me if I had diabetes because my bones were healing so slowly (but at least correctly). My hair was already falling out at this time. And during recovery from the bunionectomy, I had horrible joint pain in my knees, elbows and wrists. I have had back/hip pain since 1998, but I was still exercising! (Have to in the military).

It was around this same time 1999-2000 that I started having really nasty pain in the back of my legs (in the ligaments or tendons? behind my knees) after exercising. It would usually go away within a day though.

My back pain, bladder problems & memory got worse, but I thought it was due to stress of moving overseas in 2001. In summer that year I reinjured my back while cycling and that became permanent chronic back/hip pain. I continued to lose hair, started to have bowel & digestive problems (which I blamed on being in a foreign country, but it continued too long to be that). Memory got really bad, and I had trouble organizing my thoughts enough to get things done. I also noticed I was getting more and more acne, and they would just sit there without healing. Then I started having waves of fatigue. I'd get up on weekends at 9am and be so tired by noon that I'd have to come home from whatever I was doing and lie down. Even on vacations to amazing places (Granada, London, Egypt) I often felt like just lying down in the street and taking a rest. When I would rest, I didn't go to sleep, but I remember feeling like the energy it took to make air move into my lungs was almost too much effort. I would push my husbands arm off of my waist at night because the weight of it felt like it was suffocating me (now know that was due to the lack of energy to move my diaphram). I started pulling muscles just trying to open jars. My arms would shake just from carrying grocery bags from the store to the car and the car into the house, and I had trouble holding my blowdryer, curling iron, or comb while grooming due to arm weakness. My muscles started pulling with stretches (I did stretching religiously due to my back issues) and simply with mild exercise. I would go walking and get small "attacks" in various places on my legs with intense pain - but it would sometimes just be in one area for 5-10 minutes, then move to another area. Then I started pulling muscles just from getting out of bed. Walking up stairs became difficult (but I thought maybe I was just not exercising enough - even though I was still doing ellipse and walking when I could). I started having nausea and horrible abdominal bloating after eating anything at all. My right knee (everything seemed to be worse on the right side), started giving out from intense pain in the joint especially if it had been immobile for a while. And then came the cramps. Intense, agonizing cramps in my calves and feet (moreso in the right side). All I had to do was come home from work and either sit on the couch or go to bed and they'd strike. I also started having problems with coldness in my legs and feet (though I've always had cold hands & feet). This was agonizing cold though (right worse than left) where my feet were so cold they felt like they were burning. Nothing seemed to help get them warm. I started having delayed reactions to my allergy shots (usually between 2-5 hours after the injection) and the site would swell up to a huge 6-7cm reddened, hot circle. Whether from all the physical issues or lack of hormones (DHEA & testosterone deficiency), I had virtually no libido.

Sleep became difficult and I'd often wake up several times during the night. My skin lost elasticity and anything would leave a dent in it for hours. Then, in only 4 months time (after maintaining my weight within 3-5 pounds + or - of my norm, I gained 20 lbs - even while I was still exercising). During this time I moved back to the states and reported for 3.5 months to a temporary duty station prior to graduate school. Exposure to dust (from unpacking goods that had been in transit for 1-2 months) put me into asthma and bronchitis - I couldn't even say a sentence without gasping for air. I would have to stop only 1/2 way up a flight to catch my breath. At one gathering, the commanding officer walked in, and I - sitting on the floor because we'd run out of chairs - couldn't even stand up because my legs were so weak. I had to prop my arms up with pillows while driving because they shook so badly. My legs shook as well, so I tried to use the cruise control as much as possible. Sometimes I felt like my vision was "closing in" on me, and night time driving was horrible - the lights were blinding. Going to the mall would put my senses into overdrive and I would consistently get a headache within one hour. After writing or using the computer for an hour, my hand would be shaking so badly I'd have to just stop and rest it.

At that time I started replacing my DHEA and symptoms improved, but after 2 months, they started returning. I'd up the dose, get better, then get worse again. This went on until Feb when I started feeling convinced that my problem was something other than just a hormone deficiency. By that time I was getting vague numbness in my hands and fingers, sharp electric-like shocks through my chest - only a few times, dizziness, shortness of breath again, decreasing flexibility (I've always been incredibly flexible - took dancing forever), intensifying muscle injuries, and horrible muscle pain with even just 1-2 days of walking. Just 3-4 weeks ago I started having daily neck/shoulder pain, sore throat, ear aches (my right ear has been somewhat "stopped up" for 2.5 years), and fevers. My temp every morning is 96.8 to 97.2 and by 4pm 99.2 to 99.8, and I've felt like CRAP. Some mornings, even after 7 hours of sleep (3-5 used to be normal for me 5 years ago), I wake up with swollen, dark eyes.

I grew up in Northern Florida in the woods where deer hunting was a popular holiday passtime (no, not me! I love deer - they're beautiful), and we were always pulling ticks off ourselves and our multitudes of animals. I moved to Tallahassee for 13 years and lived even more in the woods there. We couldn't even go outside without pulling off ticks - some of them well embedded. Then we moved to Portsmouth, VA - which appears to be within one of the high risk areas of the east coast. I used to cycle outside and hike a lot, and we vacationed on the east coast close to Maryland at a national park swarming with deer (and probably ticks as it is well within the high-risk area).

I do remember having a horrible sinus infection in 1998 that went on for 2 months before I was able to breath out of my nose again! My allergist wrote on my medical record 7-8 months later that I reported to her "I've been sicker this year than I've ever been before" with multiple colds and illnesses. And I had what I thought was the flu in April 1998, with my highest fever ever of 103.6, but no one else around me ever got sick. Go figure.

So, that's my story. Only got "clued in" to Lyme as a possiblity about 2.5-3 weeks ago. Just dumped my FP when she commented that I "have too many problems" and suggested it was psychosomatic. Personally, I think it's Lyme, but will have to wait to find someone willing to test me. Military insurance is VERY picky about who we go to. I've already had trouble with it. You'd figure they'd want me well and functional!

Anyway, so sorry this is so long. As with everyone else, it's been an incredibly long stuggle, and I'm ready to start feeling better and reserve any possible function I can still save. I enjoy hearing all of your experiences. Always something to learn.

Kali





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