Posted 8/16/2016 11:04 AM (GMT -6)
WARNING: LONG POST
I should first point out that as far as I know, I've never been bitten by a tick and I've definitely had no strange rashes. But in about the second week of March of this year, I began to develop a strange flu-like illness. It wasn't severe or debilitating, but it was unusual for me as I very rarely get sick. I also noticed that the gum on my upper left front tooth had receded slightly and the tooth became very sensitive (not painful really, but it was sensitive enough that I felt VERY aware of the tooth being in my mouth). I could have sworn that I'd felt the tooth move and was paranoid that it would break and fall out. Then, after a few days, the tooth issue abruptly stopped. I should point out that I was already a little high-strung at the time as I was unable to get to my local patient assistance program to get my Celexa 40mg for about two months (I have no insurance). On Saturday, March 19, 2016, my left hand and forearm began tingling and burning and my heart was felt like it was going to fly out of my chest. I left work early and had my mom take me to the ER. They ran EKG, all sorts of blood work, and a nose mucus test to see if I had the flu. It wasn't the flu and I was diagnosed with a viral syndrome. They told me that they had no explanation for the hand tingling (which subsided greatly after a few hours) and sent me home with a note excusing me from work for three days. The viral syndrome eventually went away, but the hand tingling and heart palpitations remained. I became convinced I was dying and that the EKG that the doctors told me was normal
had to have been a mistake. Oddly, the symptoms seemed to go away at night. I also began having difficulty sleeping. In the middle of the night of March 30, I awoke abruptly to find that both triceps burned and felt really weak (but it was a perceived weakness) and when I tried to go back to sleep, I had difficulty breathing as though my body forgot to exhale. I went into work later that day with by left arm feeling incredibly weak and tingly. I again left work early and this time I went to a local urgent care. In the waiting room (luckily they weren't busy), I had what could only be described as the worst panic attack ever. I was completely clammy, pale, breathless, and I felt what I can only describe as an electric jolt that shot down my left arm. They examined me, reassured me that it was a panic attack, and advised me to call a local mental health clinic to get back on my Celexa. I did so two days later and got my prescription. I was still having odd pains, palpitations, dizziness, etc., that seemed to die down at about 8pm every night. I still couldn't sleep and had no appetite. After a week, the Celexa seemed to start working as I was less jumpy and had more of an appetite.
Then it would abruptly stop working.
I was able to get accepted as a patient at a local free clinic in which local doctors volunteer their time to treat people. The doctor on call on April 15 told me that she'd give the Celexa a couple more weeks to see if it would take full effect. If not, she'd prescribe Buspar. The following day at work, I seemed to be okay. Then when I was ringing up someone at my register and my left arm went tingly and felt REALLY tired. I got through the rest of my line as quickly as I could and went on break. I called my mom in tears, saying that I thought I was I having a heart attack. She told me I was fine and to calm down. I kept trying to explain to her (and to doctors, with little success) that I felt the pain FIRST, at which time I panic, not vice-versa. Of course, it went away on its own later that day. I was somewhat okay for the next few days, until Friday, April 22 when I began feeling really nauseous. I didn't actually vomit, but it was like I was having motion sickness even though I was basically just walking or sitting normally. This continued off and on for the next two weeks. It was May 6 when things got really bad.
That night, I was sleeping on the couch when I woke up randomly like we all do in the middle of the night. When I attempted to go back to sleep, my left arm and both legs took on a life of their own. My legs began flexing and extending back and forth and my left did much the same thing with my hand grabbing uncontrollably at my night shirt. I thought I was having a seizure. I pretty much had to lay on my arm to get it to stop moving. Luckily, I had a doctor's appointment later that day and explained the situation. She gave me the neuro exam (i.e., pull back against her with my arms, don't let her push my shoulders down, etc.) and I passed. She put me on Buspar 7.5 mg along with my Celexa. On around May 9, I began having really bad short-term memory problems. People would tell me something and five minutes later, I'd ask them the same question. I was dizzy and had muscle twitches. I had another appointment with the same doctor on May 13 and explained what was going on and she simply upped the Buspar dosage and told me to come back in a month. In the meantime, I went back to the mental health clinic and told them what was happening with my memory. They assured me that it was likely the combination on Celexa and Buspar abd that I didn't have dementia. They put me on Effexor XR, Visteril as needed, and Gabapentin to help with the tremors I'd begun having. I went back to the regular free clinic and that doctor AGAIN did the whole "it's anxiety" routine. A month after that, I saw different doctor there who suggested it was B12 (I had suspected this too) and to take the sublingual pills. I've been taking 5000mcg sublinguals for about a month and see little improvement. My memory is still awful and I can't always remember my words. When I again explained this the mental health people, they just took me off Effexor which the substituted Wellbutrin and upped the Gabapentin. Two nights ago after work, I went to the ER and complained of my cognitive issues, dizziness, tremors, coordination issues. They did a CT scan on my brain and found no structural damage or fluid build-up. All blood and urine tests came out normal. Again, I left with no answers and symptoms that continue unabated.
To summarize, my symptoms are (from this board's own master symptom list):
* Low-grade fevers (occasionally)
* Low body temperature (below 97.5) (occasionally. I've been SO cold and felt feverish. Take my temp and it turns out to be 97.9.)
* Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
* Heart palpitations
* Heart pounds so hard it shakes body, bed (sometimes)
* Sighing, frequent, not related to mental/emotional state
* "Brainfog"; inability to think clearly (by far my worst and most frequent symptom. Usually have a lot of pressure/fullness in my head when it happens.)
* Difficulty moving tongue to speak (sometimes feels like my tongue is too big for my mouth)
* Light-headedness, feeling spaced-out
* Muscle twitching
* Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities (usually in my arms or hands, but for the past few days had been in my outer thighs)
* Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance) (I've had two brief occasions a few months ago where I suddenly couldn't taste what I was eating. Only lasted about an hour, but still unnerving.)
* Tinnitus (ringing/noises in one or both ears)
* Tremors, trembling
* Difficulty with simple calculations (e.g., balancing checkbook)
* Difficulty expressing ideas in words
* Difficulty moving your mouth to speak
* Difficulty following simple oral (spoken) instructions
* Difficulty following complicated oral (spoken) instructions
* Forgetting how to do routine things
* Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
* Impaired ability to concentrate
* Losing your train of thought in the middle of a sentence
* Losing track in the middle of a task (remembering what to do next)
* Switching left and right
* Slowed and/or slurred speech
* Stuttering; stammering (People swear up and down they don't notice this or the slurring, but I know I'm doing it.)
* Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
* Word-finding difficulty (Again, people say they aren't noticing, but I may be better at compensating for this than the slurring and stuttering.)
* Frequent diarrhea (sometimes, five minutes after I've eaten!)
* Food cravings (especially carbohydrates, sweets) (Especially just as I'm falling asleep. The other night, I started craving peanut butter just as I was drifting off and had to get up to get some because the craving wouldn't leave me alone.)
* Increased appetite (for the first month or so when I got sick, I had no appetite at all.)
* Weight gain or loss (Gained 10lbs in the past month)
* Bite your cheeks or tongue frequently (I can sometimes find teeth grooves in my tongue and it's sometimes sore.)
* Distances (difficulty judging when driving; when putting things down on surfaces) (I've actually walk into my register at work when I approached it because I didn't think was standing as close to it as I actually was.)
* Dizziness or vertigo
* Dropping things frequently (worse under stress, but sometimes it feels like my fingers won't work)
* Impaired coordination (my hand-eye coordination must be off because I sometimes keep missing the button on my register that I want to hit even as I look at the keyboard)
* Pressure sensation behind eyes
* Double vision (a little. It feels like I go cross-eyed or get eye strain if I look at something directly for a while)
* Spots or floaters not related to migraines (I'm seeing those crystal-like worm floaters right now as I write this. Especially bad on bright backgrounds or outside when it's really sunny.)
* Canker sores (sometimes)
* Dizziness when you turn your head or move (I've had times where I've simply rolled over in bed and got really dizzy.)
* Pain in ears, palate, gums (see my opening paragraph about the receding gum)
* Morning stiffness
* Muscle pain, stiffness, weakness
* Writing causes pain in hand, arm shoulder (hand sometimes cramps when writing and I have to put the pen down)
* Abdominal pain (usually accompanies diarrhea or constipation, but I occasionally get a stabbing kind of pain in my upper stomach)
* Abrupt/Unpredictable mood swings (I usually don't get angry, but I will randomly start crying, usually because I feel so alone and scared about this whole thing. I'm crying as I write this.)
* Anxiety or fear for no obvious reason (I'm extremely close to my mother and worry about losing her and/or becoming so physically incapacitated and mentally impaired that I don't remember her.)
* Appetite increase/decrease
* Decreased self-esteem
* Depression or depressed mood
* Feeling helpless and/or hopeless
* Feeling worthless
* Frequent crying for no reason
* Helpless/Hopeless feelings
* Inability to enjoy previously enjoyed activities
* Myclonus (restless leg syndrome; occasional jerking of entire body)
* Altered sleep/wake patterns (alert/energetic late at night. ) (My brain fog and issues with movement and coordination seem noticeably better at night.)
* Difficulty falling asleep (sometimes, even with Trazodone)
* Difficulty staying asleep (frequent and/or prolonged awakenings) (Up until about a month-and-a-half ago, I had HORRIBLE insomnia and was only getting about two hours of sleep a night.
* Unrefreshing/Non-restorative sleep
* Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel (Stress is what exacerbates a lot of these. Work is a nightmare, as is going to Wal Mart.)
* Symptoms change focus from time to time, like infection is moving through the body.
* Thickened "sleep" around eyes in mornings. (Sometimes, my eyes are a little stuck together.)
That's all I can think of for now. I don't know whether I have Lyme or not. I just qualified for affordable health insurance which kicks in on September 1. There is a psychiatrist in my immediate area who takes my insurance and apparently diagnoses and treats Lyme (at least her name was listed on a website of such doctors in my area). I don't know if that would be just as good as an actual Lyme specialist or infectious disease specialist. I'm sick of being told it's anxiety and depression and that I should just relax. With all of the symptoms I'm experiencing, who wouldn't be depressed, anxious, and terrified? But they just give out anti-depressants like candy. The whole thing is like a weird combination of dementia. ADD, MS, Parkinson's, and asthma and I can't get that across to people. I guess I should be a tiny bit relieved that the CT scan came back normal, even though that doesn't really prove much.
I feel like doctors think that because I can correctly use words like "neurological", "cognitive", and "tremor", I don't have anything wrong with my mind. It's basically the whole "But you don't look sick" routine and it upsets me. I'm sure everyone here on this board can relate to the feeling of not being believed.
I don't believe this is, or ever was, an anxiety issue. I think people came to that conclusion (and at first, I was one of them) because I just happened to be off my medication when the symptoms first started. Anxiety and depression seem like neat little catch-all diagnoses that are used nowadays when doctors can't find the source of a symptom or problem. Yes, I have those things, BECAUSE NO ONE LISTENS TO ME!
Anyway, even if I don't have any form of Lyme, thanks for letting me vent. You seem like a group of people who understand what I'm going through and how frustrating it is to feel like people don't take you seriously because you don't necessarily "look sick".