Diagnosis of Lyme disease is at present something of a crap shoot. The test one is most likely to receive from a mainstream Lyme doctor or any doctor not especially educated or experienced in Lyme disease has been shown to be up to 40% unreliable. That test is commonly referred to as a “Lyme-titer” and more scientifically known as an IFA or ELISA test. The only physical symptom unique to Lyme disease, the EM, or “bulls-eye” rash, which was once accepted on its own as a diagnostic by the Centers for Disease Control and Prevention (CDC) is no longer officially accepted as such. This decision was based on no scientific data whatsoever, according the International Lyme and Associated Diseases Society (ILADS). The testing protocol required by the CDC for reporting Lyme cases was set up, to all appearances, to eliminate as many cases as possible, to the benefit of insurance companies, which resist paying for treatment of chronic Lyme cases.
The EM rash, in addition, does not appear in even half of Lyme cases later diagnosed by testing. Up to 50% of Lyme patients do not remember either the rash, a tick bite or an illness conforming to early Lyme symptoms. Late symptoms overlap completely with other illnesses, some of them also difficult to diagnose. Lyme disease symptoms being intermittent, often separated by long, asymptomatic periods of time, victims are very likely to go to the doctor, perhaps a specialist, with a single symptom and be diagnosed and treated for that symptom alone. Doctors do not routinely look at a patient’s complete medical history if the patient has come in with an easily diagnosed single symptom. Specialists tend to see their specialty.
Many are the Lymies, including myself, who are literally laughed out of the room if they mention Lyme disease to a non-Lyme doctor. They are often to usually compelled to diagnose themselves, then find a non-Lyme doctor willing to assist in getting them adequate testing or to find an LLMD willing to take them, one who very likely does not take insurance because insurance companies lead the effort to downplay the existence of chronic Lyme disease.
So, how do you diagnose yourself? By educating yourself about Lyme disease in general and then reviewing your own medical history and environmental history (remember, you may not have seen the tick) and comparing it to what is known about Lyme symptoms. I compiled the list below as an aid to help people do that. I recommend that you assemble all your medical records from the time you think you could have been bitten by a Lyme-bearing tick. There are Lyme hot spots, northern coastal CA is one, but no state in the union does not have Lyme disease. Then, compare your medical history to the list below. There is a shorter list on this website, but that one combines indicators and is aimed at doctors. Since so many indicators are vague and likely to be ignored unless you know its a Lyme indicator, I have included the widest possible variety of descriptions of indicators and have organized them into different anatomical systems. The more different indicators you have had in different systems, the more unrelated they seem to be, the greater, I maintain, is the probability that you have Lyme disease.
The list bears no relationship to frequency or seriousness of the symptoms, because of Lyme’s status as the “great imitator.” The goal here is to see if there are a variety of subtle, otherwise unrelated weird symptoms–things you noticed but really could not explain, perhaps in addition to the things that are most painful, debilitating, etc. For me, those things were floaters in my eyes, spatial disorientation, peripheral neuropathy (jabbing pains, numb spots, trigger spots), sudden unfamiliarity of my familiar surroundings and word substitutions. These are things I noticed, had no explanation for, “shined on” for years, then found in the Lyme literature when trying to explain the really scary things, like arthritis, heart palpitations, legs that didn’t work, uncontrollable crying, insomnia, etc.
The list has not been updated since I compiled it and started handing out hard-copies about 10 years ago. The right hand column indicates the sources from which I obtained it, included in the list of references at the end. There are no page references, I’m sorry, its not the best of scholarship, but I was just too sick to cite my references properly. The best I could do was leave a trail for anyone who cared that much about references. As far as I know, there is nothing that needs to be removed from the list on the basis of later research, but there are many things that could now be put on it. A later and presumably more thorough and up to date, similarly organized list is available here.