Introduction: diagnosis difficulties
The most frustrating diagnostic difficulty with Lyme disease, aside from the lack of a widely accepted accurate test, is that there is only one symptom completely unique to Lyme disease, the rash, and that one appears in less than half of Lyme cases. In addition, whereas the EM (aka bull’s eye) rash associated with a tick bite was once accepted by the mainstream medical world, even the Centers for Disease Control, it has now been dropped by those doctors and institutions as being uniquely characteristic of Lyme disease, based on no science whatsoever.
Throwing out the EM rash as a unique diagnostic makes Lyme disease even more difficult to diagnose, whether in its early stage or in later stages. I include mention of the rash in relation to later stages because the EM rash is not specific to the early stage and may appear at any time later on at any location on the body, not just at the site of a former tick bite. This “secondary” rash may or may not be associated with other symptoms of a relapse. Strangely enough, it sometimes even has a little dark spot in the middle that looks, at first, like a tick! I have, myself, had several secondary rashes, some along with other signs of a relapse and some not.
Should a person infected with Borrelia (the Lyme disease bacterium) fail to experience the early-stage symptoms of EM rash and/or flu-like symptoms in association with a tick bite, then that person may not experience Lyme symptoms until years later. Those later-stage symptoms may present in any order or combination and are so diverse (see symptom list on Northcoast Lyme Disease website) and sometimes so subtle that only a doctor trained in Lyme disease diagnosis is likely to detect some of them or to detect a pattern of Lyme symptoms. Lyme doctors, unlike non-Lyme doctors, will pick up on the more subtle clues, such as word substitution or intermittent balance problems and will look at a patient’s history with a eye to cumulative patterns. Given the unreliability of the lab test non-Lyme doctors are most likely to give, noticing the cumulative pattern of symptoms may be crucial to diagnosis.
In other words, you see your local primary doctor, complaining of tennis elbow, get treated for that, come back six months later with extreme PMS, get treated for that, come back later for depression, get treated for that, come back later for collapsing legs and extreme back pain and get sent to a neurologist, who diagnoses you with MS or ALS or Parkinson’s, all incurable. You may end up being sent to a number of specialists, each of whom is looking for his/her own specialty and downplaying any other specialty.
The neurologist may give you the highly unreliable Lyme-titer test, you test false negative, and the neurologist moves on to a spinal tap which may test positive for the particular protein that is common to both Lyme disease and MS. This happened to me. Luckily, that was the only indication of MS and I was already seeing a Lyme doctor who knew about that shared protein. It is important not only because Lyme disease is sometimes curable and MS isn’t, but because the treatment for MS is entirely different than the treatment for Lyme disease and is incredibly expensive.