Posted 2/15/2015 5:29 AM (GMT 0)
I have not been diagnosed with Lyme. I haven’t even been tested yet. For years I’ve been suffering odd symptoms that come and go. I’ve had a lot of tests, but no diagnosis. I have an upcoming appointment with a new doctor, and I’m intending to make a case for Lyme. A friend of mine who is familiar with my struggles mentioned to me the idea of “neurological Lyme”. As soon as I started researching it, I couldn’t believe how well the symptoms fit me.
I’m 35 years old right now. I grew up in Wisconsin. In my high school years and early twenties, I spent a lot of time in the woods. My boyfriend at the time was an avid hunter. We often went out and hiked through the woods scouting for signs of deer and looking for a good place to put a tree stand. We also shot archery and went to 3D shooting tournaments almost every weekend in the summer – the courses were primarily set in the woods.
Around my senior year of high school I remember having a weird rash on my upper arm and just generally not feeling well at the same time. The rash was not the classic bulls eye, or I would have suspected Lyme. Instead I just chalked it up to a virus.
A few months later I suffered an ankle sprain playing volleyball. After a few weeks off I returned to practicing. After the first day back I remember feeling sore and having aching pain all over. I assumed I was just out of shape. But then a new odd symptom began, a feeling of pressure and heaviness in my chest. I was of course worried about a heart or lung issue. I had an EKG, and some lung function tests. They couldn’t find anything wrong. After a month or so, it disappeared and I moved on, again assuming it was some weird virus or just a muscle strain from volleyball.
A few years later in college, I had an episode of extreme head pressure. I would describe it as a feeling that something between my brain and my skull was swelled. I went to my doctor, who didn’t know what it could be but decided to call it a sinus infection and prescribed antibiotics. It lasted for a few weeks. After that episode I began experiencing heart palpitations. Again I went to the doctor who did an EKG and told me that I just had some harmless PVCs.
For the next several years I remember odd symptoms here and there: Aching in my joints, sharp pains, occasional episodes of head pressure, heart palpitations etc.. I generally ignored most of the symptoms, telling myself I was probably starting to get arthritis, and that my sinuses were just sensitive, etc. I got married, had two babies, and attributed any aches and pains and symptoms to stress and lack of sleep.
about five years ago, I remember sitting and watching a movie with my family when the tip of my tongue started tingling. I was a bit freaked out. It happened off and on for a few days and then went away. Then the odd symptoms began occurring more frequently. It might be head pressure for a few days, then a month later a tongue tingling episode, then a month later aching knees and fingers, then a few days of ringing in the ears, then some heart palpitations. I again ignored most of the symptoms and did not seek treatment. It all seemed so random to me and I didn’t even know if it all meant anything and how to even describe it to a doctor if I went without sounding like a hypochondriac.
Then three years ago I had a huge “flare up”. I started again with the chest pressure and tightness and pain along the bottom of my rib cage that would not subside for days at a time. Lung X-rays were done and nothing was found. I was medicated for gastric issues and had and upper GI scope. No issues found. I began having heart palpitations. I had a cardiac workup and stress test. Everything looked ok. Basic blood work was done. I was checked for thyroid issues. Nothing abnormal was found.
Other symptoms began popping up. I had shooting pains down my arms and legs. There was aching in my joints and burning sensations on my upper thighs. Sometimes I had a feeling that I was trembling or shaking internally. I had muscle twitches, head pressure. The tingling tongue came back, and a weird burning yet numb at the same time sensation on the side of my nose. My eyes had an aching/burning pain behind them. I was tested for mineral deficiencies. Everything looked ok. I went to a neurologist. He insisted I was fine, but to appease me ordered a brain MRI (without contrast) and there were no abnormalities or signs of MS. I suggested the possibility of Lyme to my doctor, but he did not feel testing was warranted.
Through all this, my doctor was expressing the opinion that it was probably all just anxiety and encouraging me to try some Zoloft. I really did not like the idea and drug my feet but after all the tests and no diagnosis I gave in and began taking it. After all, I was very anxious and scared. Something was wrong with me and no one could figure out what it was.
The Zoloft didn’t make the symptoms go away, but it helped me stay calm and deal with them better. So, the big flare up calmed down and the symptoms came and went one or two at a time and I just dealt with them or ignored them the best I could.
I started going to the chiropractor as a last ditch effort, thinking maybe pinched nerves were the root cause of everything. She did discover that my ribs were slipping out of place and I was suffering costocondritis as a result. So, I then just told myself that everything happening was in fact related to pinched nerves and I didn’t have to worry any more.
about two weeks ago I began another big flare up. It started with tongue tingling and the pain behind the eyes. Then I began cycling through all the other symptoms again. I decided it’s probably time to go back to a doctor again and try to get to the bottom of this. Of all the hours I’d spend Googling symptoms in the past, I had never researched Lyme, especially the neurologic aspect of it, in depth. I was shocked to see some of the other odd symptoms I’d had on the list that I had no idea could be Lyme related:
- Ear pain and ringing in the ears. There were a few times I went to the doctor with stabbing ear pain fully expecting to find I had an ear infection only to hear everything looked ok.
- The stiff neck and joint crepitus. My joints pop so loud sometimes! My neck always feels “crunchy” and pops often.
- The Lyme shrug. I find myself often shrugging my shoulders up and throwing my neck back in an effort to crack it and relive the pressure and stiffness. My friend told me that she has also often noticed jerky movements of my shoulders in an upward fashion.
So, I’m strongly feeling like I have a case of late stage, untreated Lyme with neurologic effects. I am hoping that the new doctor I see will agree and want to test me. I am scared because the research I have done tells me that Lyme testing is not that reliable and that false negatives are common. Honestly, as bad as it may sound, at this point I think I am more afraid that my doctor will tell me that I DON’T have Lyme than tell me that I do. I just want to know what I have and be able to treat it the best I can.
I know this was very long but I felt like I needed to chronicle this to get it all straight in my head before meeting the doctor. And if anyone has insight that they can give me or similar experiences they could share, I would greatly appreciate it!