Another thing that makes an accurate diagnosis more difficult is that doctors are also grossly misinformed about the importance of the Lyme rash. Many doctors will not consider testing for Lyme if there is not a bulls-eye rash, but the truth is that a bulls-eye rash only appears about 50% of the time. The rash also does not have to be at the site of the tick bite, and it only appears for a short time. Often by the time a patient gets into a doctor, the rash is gone and the doctor refuses to consider Lyme.
Another complication occurs when a doctor agrees to test for Lyme, but she/he relies on inaccurate tests and interprets the results of the test incorrectly. Both the ELISA test and the Western Blot are known to be inaccurate, and yet most doctors insist the ELISA test and the Western Blot must be CDC positive before diagnosis. The problem is the tests measure the patient’s antibody response to the infection, not the infection itself. This response takes 2-4 weeks to be made in quantities large enough to be consistently measured. It hits its peak at four weeks and then will only stay in circulation for about six months. So if you do not get tested at the precisely correct time, your test is not accurate. And yet doctors have the idea that if you get a positive it’s probably false, when in fact it’s the reverse. If you get a negative test, it doesn’t mean you don’t have Lyme.* There are also countless cases of patients being told by their doctor that their test was negative, but when they get a hold of the test results it was actually positive. The doctor just decided it was a false positive and lied to the patient about the results. Of course the repercussions of the doctors poor decisions are always visited on the sick patient. So if you get tested, make sure you get a copy of the lab results to make sure they are interpreted correctly.
With all this said, I am not one of those Lyme Disease patients who thinks everyone with Fibromyalgia actually has Lyme. The problem is that doctors are ignorant and like to use Fibro as a cop out, “I don’t know what’s wrong with you and you’re in pain, so it must be Fibromyalgia.” It many cases this is true, but if you have exposure to ticks Lyme Disease should be completely ruled out before accepting a Fibromyalgia diagnosis.
*If you want to see more information about the truly abysmal accuracy rates of two tiered testing for Lyme, go here and look under the two tiered testing section.
I am a chronic Lymie. It took more than 10 years for the correct diagnosis. Of course, I WAS diagnosed with Fibromyalgia. Three months ago I completed my Lyme treatment provided by my LLMD, here in WI. Slowly I feel as if the Lyme symptoms are coming back? But, because of the similarity between the two, I am so confused. Really, the only symptoms is pain and fatigue, but I have it every day, some worse than others. Maybe my fibro has gotten worse?? Ugggh… I need a break!