Tests for Lyme disease aren't reliable


#1

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#2

I can attest to this. When I came down with all of the symptoms (save the bulls-eye rash) a few years ago, I went to the doctor and got tested. When it came back negative, he simply said that I should still get a full course of antibiotics assuming I had Lyme. I never had to convince him, since he had seen this quite a lot. Catching it early enough makes a huge difference in treatment outcomes.


#3

I seem to recall that some of the tests have a relatively high false positive probability.


#4

My closest friend has Lyme and it has seriously fucked him up. Since it masquerades as so many other things, from physical to mental and everywhere in between, the diagnosis is often late or just plain wrong. My buddy is also in the military, and getting them to accept that he’s sick is a fight he’s been waging for the last few years. Had he not been military and/or had no healthcare, I’m pretty sure he would be dead now.
If you spend time outside in rural areas, always be sure to check for those little bastards because Lyme is real and it’s a horrible disease to deal with.


#5

Maybe better to check for the bullseye bites instead? I gather that Lyme Disease is carried by very tiny deer ticks, not the regular, much larger ones. I’ve never even seen a deer tick, though I may have looked right at one many times.

Do you actually find deer ticks on yourself?


#6

We just watched "The Punk Singer" which chronicles Kathleen Hanna’s struggle with Lyme and misdiagnosis. Its a horrible disease. She cancelled another tour last month because of a relapse.
Excerpt from ‘The Punk Singer’ - Kathleen Hanna Documentary


#7

There are no perfect laboratory tests; FDA-approved or otherwise. There are always reasons, including the sample being collected at the wrong time (since, in this case, antibodies measured in FDA-approved Lyme serologic tests take time to develop) to other pre-analytic (collection, handling, even mislabeling errors) concerns. The claims made by the labs with unproven tests, e.g., to diagnose Lyme or “chronic” Lyme (an array of varied symptoms that can result from other disorders)
have not been proven studies designed to demonstrate that the tests results support the claim(s).


#8

Yes, you can find deer ticks on yourself, but you have to look carefully. I have just finished 4 weeks of antibiotics after finding a tick doing what it does best. It was in an awkward place to see and I was probably careless. We check every evening as soon as the snow melts through the summer, using mirrors, and each other when in doubt, and I will excuse myself and drop my pants to check if I feel any possible creepy thing on my legs, etc. I had Lyme 4 years ago and it was devastating, with short term memory loss, other cognitive issues and joint and muscle pain, etc. We live in rural western Massachusetts and work outside so we have to do daily checks.

I don’t bother with testing. If I find a deer tick beginning to get engorged I go for a blast of doxycyclene and call my Primary. I don’t overuse medication, but I will demand 4 weeks of antibiotics if I find a tick embedded. There is no point in messing around. I know many people really damaged from undiagnosed Lyme, and some Docs are very resistant to aggressive treatment. I know the signs and don’t take “No” for an answer when seeking help for a tick bite. Docs who have had Lyme or who have had a family member with Lyme are much more understanding, and probably won’t tell you you are being unreasonable.


#9

Thanks, though it does make me rather afraid to go outside during the summer. Shivers.


#10

A few years ago I spent a month camping in the Scottish Highlands, a Lyme endemic area. I found an embedded tick on my back on the plane on the way home, had a few weeks of fever, malaise, joint aches, and developed a classic bulls-eye rash around the site of the tick bite. My initial Elisa test was positive, and I took the course of antibiotics, but my follow up Western Blot was negative. Clearly I had Lyme, but the US test only tests for one strain, not the European one as it turns out, and even then it is often wrong, and the full pattern of antibodies, or bands, take months to develop, I got my test a bare 3 weeks after my tick bite. Yet, technically, according to the CDC without a positive Western Blot I never had Lyme. Even with the antibiotics it took me at least 6 months to feel normal again. I now carry doxycycline in my camping first aid kit, and do tick checks every night of a trip. If I find an embedded tick I will immediately start the antibiotics, it’s just not worth the risk. Luckily the Minnesota (another endemic area) recommendations are to aggressively treat all Erythema Migrans with 14 days of antibiotics.


#11

Oh, and in Scotland the Borrelia is carried by sheep ticks, not deer ticks. I have no idea what they look like though, I found the embedded tick because the spot was sore and itchy and a scratched the tick out of my skin while itching. It was pretty mangled and gross at that point, but recognizably a tick.


#12

I’ve had it three or four times, so any test for antibodies is always going to show positive.


#13

Honestly, I couldn’t say, but having seen what Lyme can do has made me far more proactive about checking. And they’re ticks, which are horrible little parasitic backpacking scum, so they deserve to be found and murdered if they make it onto my hallowed skin.


#14

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