Remember, when the original ELISA(EIA) test for Lyme was developed, many "normal" controls tested positive. Lyme couldn't be that prevalent--at least that is what the early investigators thought. This is why the bar was set high, hence, the confirmatory Western Blot.
It unknown how many people in an endemic area are infected with Lyme. Is it 10%? Is it 90%. We have no idea. For the sake of argument, let us say the number is 50%. We then have no clue what percent are "symptomatic". Furthermore, we do not have a clear definition of what "normal" is. There are natural physiological changes which occur with aging. I am 54 years old. If I play tennis, my brain may tell my body to do the same things it did when I was 20---not going to happen.
Asking patients to answer specific questions in inherently problematic. When a patient comes in with a long list of clear symptoms it is one thing. When positives are elicited only when a patient is queried, it may mean something entirely different. If a patient thinks long enough about any question, a positive response may be forthcoming. A lot has to do with the individual's personality.
As physicians know, testing becomes meaningful when the "pretest" clinical sense, points in that direction. Testing for Lyme is unreliable. A basic rule of thumb for me is: treat the patient, not the lab. Most patients don't want to shell out the money for a speciality Lyme WB. "Just send the test to Labcorp." And, if an Igenex is done-- the results borderline positive, what does this mean? Only a physician's clinical judgment can decide if a patient's symptoms are likely the consequences of chronic Lyme disease.
Most major scientific breakthroughs have been made by young people, under age 30. Mathematical abilities decline with age, although verbal abilities do not, and in fact may improve.
So what is there to do when a patient appears "normal" by the physician's best judgement? Again, there is no definition of normal. When queried, most over 50 year olds have some aches and pains with exercises, but recover quickly. Perhaps there are some mild cognitive changes(?normal). Nonetheless, the "patient" feels normal. He has no fatigue or functional incapacity. Testing is not done simply because other family members have chronic Lyme disease.
If I treat what am I treating? What is the goal? What is the endpoint?
This is why I recommended watchful waiting. Otherwise, if one looks hard enough--turns over every rock: everyone has Lyme disease. Patients who suffer with Lyme disease see this case through a different lens--the lens of their illness. It is just not that simple.
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9 comments:
I heard of a Lyme blood test where if you look at a drop of blood under a high power microscope 3 to 8 hours after the sample is taken, you can see Lyme spirochete(s). You know they are Lyme, because Lyme is longer than a red blood cell, which is apparently not the norm for bacteria (good or bad) that is in the blood stream. There is even a video on youtube that shows this. Would you please comment on this test, or point me to where you discussed this?
These pictures are great but will very rarely be found. When a patient is very ill with fulminant Lyme disease, spirochetes may be seen with a dark field or even an ordinary light microscope in the blood. Of course, other, non-Lyme spirochetes will give the same apprearance. Such patients will also have a positive PCR for Lyme in the blood. Again, these patients will be septic with fever: they are acutely very ill. The PCR is more specific and can detect lower numbers of organisms.Lyme is a tissue organism and rarely observed in blood. Such is the case with chronic Lyme patients. Sorry.
I agree with you doc. I have a couple of friends who now are convinced they have "Lyme" but they go on with their lives, travel, work, exercise...do not have payback if they stay up late or eat sugar or drink alcohol.
They are nurses on their feet 13 hours or more a shift. They don't realize I couldn't make it more than 30 minutes or that any of the above activities will leave me couch bound for a few days or worse.
I also think probably everybody has been exposed to Lyme but not all get sick from it, other factors each individual contribute to the disease taking over.
I ask my friends...so if the test is positive or borderline what will you do to treat, if it has been present for a long time one course of ABX isn't going to "cure" it and you could feel worse.
They have no answer.
"other factors in each individual contribute to the disease taking over"
Lymebrain...another part of Lyme that few recognize
I too theorize that more people have Lyme & don't know it. I know of someone that got a Lyme Disease test only because the doctors couldn't figure out why her hair was falling out. She is positive but has no effects what so ever other than the hair loss. She is an athlete & says she suffers from no other symptoms. I was extrememly stressed out when I became ill. I think I have probalby had the Lyme in my system for much longer, it just finally had the opportunity to show it's face.
Or in my original doctors case "no one has Lymes disease"
I am 44 and work 12-16 hours a day by choice. early summer I crashed, was dead by noon most days, I had joint pains that moved around from joint to joint, my arm pits and groin was sore, and now abdomonal pains (told it was gallbladder).
went to doctor #2, 2 bands of western blot showed up, 4 weeks of Doxycycl. after the 1 st week all my pains disappeared, and I was my old self.
about 2 weeks after being off the anti's things started coming back, he put me back on 100mg twice daily for 6 weeks, no improvement after 4weeks this go around.
My "guts" hurt so some nights I cant sleep, some days it's my knees, some its my hips, and some days it's the arm or thigh ?
Truthfully the doctors look at me like I have 3 heads when I explain my pains.
Is this the rest of my life ??
Well the thing is why people decline? Why some people are highly functioning and why some are not?
Mainstream has no real answer for it. From a patient point of view - this is my own health and my own life.
You (as in medicine and doctors) gave me no answers so far, so I have to seek my own.
Chronic infections have all the hallmarks to be the root cause of many health problems and "aging" process. If one can show me a better target than those and prove that its pathogenic- I will listen. But so far its been proven that infection may cause many problems
For the lack of better target I would choose to fight the one I see. I could be wrong and it might not be the culprit , but sit and wait approach = giving up on yourself.
I believe doctors are jaded. All they see is sick people. And they only pay attention to most serious degree of sickness. - It's not black and white - sick or healthy. There are various gradations in between . Doctors imho should strive to bring their patients to the upper range of wellness scale
I know its not the case currently.
I would very much like to make an appt with you - could you email me? Thanks!
I think a lot of people have been exposed, but their immune systems throw it off or they are just not genetically vulnerable to infection.
I'm pretty sure that if Igenex had the funding and interest to test a large control population, they would get a fair amount of positives who were "healthy".
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