Experiencing lyme symptoms can be maddening and erode self confidence beyond what was thought possible. Symptoms which come and go, affecting systems all over the body in a seemingly patternless way and when described sound like every day "oops". Such characteristics often leave physician and patient at odds or at least confused.
Lyme symptoms, while subtle and sound like every day "oops" events are debilitating to the core and often interfere with the simplest tasks. Unfortunately, the lyme patient often can not communicate the level of impairment to a physician, especially in the face of "...well that's not abnormal, that happens to everyone occassionally". Lyme hides in plain sight and uses many different disguises. When looking for the tell tale signs of lyme, there are patterns: look for what shouldn't be there.
Here are three symptoms I've seen show up in multiple people with chronic lyme. Most of these symptoms aren't a unique symptom of lyme, however when you get these all together in one patient (no these won't all occur at the same time), lyme had better be on the diagnostic "chopping block".
Dropping Things:
Everyone drops things. Its a normal, healthy, every day occurrence which often happens when ones try to do too much at once. This is no different with those with lyme, they drop things because they were doing too much. With lyme, what you'll see is some one holding something perfectly fine for a while, but drop it when they go to do another task, pick up another thing, or change the topic they are thinking about. Healthy people wouldn't drop things under these circumstances, however in the lyme the brain's working memory has become so small, holding 2 things in the hands and talking can be "too much". I have had my working memory get so small I struggled to dial a phone number with the number on a piece of paper next to the key to be dialed. The number to be dialed wouldn't stay in memory long enough for me to dial.
The "working memory" is the mind's work bench, this is where we pull together the pieces in our brain and make something useful of it: talking, solving problems, helping a friend. Without working memory, the world is just a bunch of stimuli and memories which mean almost nothing.
Getting Lost:
Everyone gets lost occasionally or disoriented. Most people while traveling have experienced of waking and not knowing where you are. This next symptom is almost exactly the same experience except it happens all of the sudden, during waking hours usually while doing something habitual or very familiar such as driving somewhere very very familiar. What's unique is this happens when it shouldn't. Getting lost on a routinely traveled route to work shouldn't happen to the degree of making some one turn around 3 times. Episodes of this occurring can be predictable and constant or come and go. Sufferers may start to compensating with an extra 1/2 hour or hour get somewhere on time.
Walking into Walls:
Everyone has made a misstep and put their foot where they didn't mean to, or stood up under a cabinet they forgot was there. However the lyme experience is different and because of the decreasing working memory space mentioned above, is seen more often when doing multiple things at once or an every day task, which is repeated without thought, but is now "too much". With lyme seems to be a pattern of being undsteady on one side. This may feel like "pulling to the left" or repeatedly banging a hip while walking around a cabinet.
When a basic neurological exam is done it probably won't reveal a problem unless the test time on the balance tasks is extended. Maybe this is because the balance "error" lyme suffers experience "multiplies itself" as time goes on. In other words, as the seconds tick by, balance and "the understanding of balanced" gets increasingly worse. Its as if a repeating calculation is just a little "off" but the error isn't pronounced until the calculation is "run" many times.
If extra time on the balance tasks are given, one should see an increasing slow response to correct imbalance, the patient fails to compensate in a timely manner. Slow reactions to an unbalanced state, looks different than not having great balance. Doubling the basic balance test times should be enough to highlight this error, (any more than tripling shouldn't be required).
Recognizing Neurological and Cognitive Lyme Symptoms:
Lyme symptoms might appear most similar to traumatic brain injury symptoms common with athletes. Such subtle symptoms may allow lyme sufferes to pass the basic physician neurological exam but not pass the Postural Stability Assessments and Balance Evaluation Scoring System or more sophisticated cognitive and neurological tests now being used to assess athlete's fitness to return to athletic after a potential concussion impairment. These more sensitive tools may play an increasing a large role in diagnosing the difficult to diagnose lyme patient.
The key is looking for what shouldn't be there. Look for "oops" which shouldn't be there, like getting completely disoriented while driving to work. Finding "too much" unexpected or unusual should point to thinking about lyme.
Robert Bransfield, MD, Lyme Disease and Cognitive Impairments http://www.mentalhealthandillness.com/Articles/LymeDiseaseAndCognitiveImpairments.htm
New York University School of Medicine - Coordination, Gait and Rhomberg Test http://informatics.med.nyu.edu/modules/pub/neurosurgery/coordination.html
Ohio State - Wexler Center, Neurological Exam http://medicalcenter.osu.edu/patientcare/healthcare_services/nervous_system/about/exams/Pages/index.aspx
Boston University - Recovery from TBI (Traumatic Brain Injury) http://emt.bu.edu/em610/em610_ol_spring_2008/mtoda125/recovery.html
ImPACT http://www.impacttest.com/
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