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Is testing extremely unnacurate?

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Posted 6/16/2021 2:44 PM (GMT 0)
I just left blood for a full Lyme panel. Ive read that testing can be inaccurate but Im wondering if thats the more common experience, or does it only sometimes go undetected?

Do enough people actually get diagnosed properly?
Posted 6/16/2021 3:02 PM (GMT 0)
Here are some resources to consider, as you do your own research:

https://rawlsmd.com/health-articles/just-how-reliable-are-lyme-disease-lab-tests

https://www.betterhealthguy.com/lyme/testing

Post Edited (The Dude Abides) : 6/16/2021 2:12:06 PM (GMT-6)

Posted 6/16/2021 3:06 PM (GMT 0)
I'm not sure why my above posts are in italics. I did notice that Rider400's post has the opening and closing flags reversed for italics. But, that shouldn't carry over into my posts. I checked recent replies to other posts and they are not in italics. Strange.

.

Post Edited (The Dude Abides) : 6/16/2021 2:11:48 PM (GMT-6)

Posted 6/16/2021 3:21 PM (GMT 0)
Obviously you're not a golfer.

Joking, this is good info. The body is complex man! Thanks dude.

The Dude Abides said...
Here are some resources to consider, as you do your own research:

https://rawlsmd.com/health-articles/just-how-reliable-are-lyme-disease-lab-tests

https://www.betterhealthguy.com/lyme/testing

Posted 6/16/2021 3:50 PM (GMT 0)
"Yeah? Well, you know...that's just like, uh, your opinion, man."

Happy to help, friend. Best of luck.
Posted 6/16/2021 4:20 PM (GMT 0)

Rider400 said...
I just left blood for a full Lyme panel. Ive read that testing can be inaccurate but Im wondering if thats the more common experience, or does it only sometimes go undetected?

Do enough people actually get diagnosed properly?

What lab did you test with?

You should be testing with a lab that specializes in tick born illness testing - Igenex and Armin Labs are two.
Posted 6/16/2021 6:06 PM (GMT 0)
I was under the assumption when going there that the testing was happening thru Igenex but when I asked I think the doctor said it was another place that was handling it. He has dealt with Lyme patients before and had pamphlets throughout his office regarding Lyme and Herx and so hopefully its headed to the right place.

Hopefully.
Posted 6/16/2021 7:18 PM (GMT 0)

Rider400 said...
I was under the assumption when going there that the testing was happening thru Igenex but when I asked I think the doctor said it was another place that was handling it. He has dealt with Lyme patients before and had pamphlets throughout his office regarding Lyme and Herx and so hopefully its headed to the right place.

Hopefully.

He didn't tell you the lab? I would ask again.

Hopefully it is Igenex.
Posted 6/16/2021 9:15 PM (GMT 0)
They said they use different labs for different tests. The two they mentioned are MDL and Quest. I believe some of the bloodwork is to check something other than actual Lyme, something that would be an indicator of infection or something like that. I may have that wrong.

Do Igenex results come all at once? Was told these results will come in over the next few weeks as they have been completed.
Posted 6/16/2021 9:19 PM (GMT 0)
Quest isn’t a good lab - this is from what I’ve learned from forum members plus my first LL Doc
Posted 6/16/2021 9:21 PM (GMT 0)
“ Do Igenex results come all at once? Was told these results will come in over the next few weeks as they have been completed. “

I only did a western blot IgM and IgG and it took a few weeks - but that was 6 years ago
Posted 6/16/2021 9:25 PM (GMT 0)
Not sure what else I can do at this point. Blood has already been sent off.
Posted 6/16/2021 9:30 PM (GMT 0)

Rider400 said...
Not sure what else I can do at this point. Blood has already been sent off.

… down the road you can always test again if you have some doubts.
Posted 6/17/2021 9:27 PM (GMT 0)
The ELISA test for Lyme is wildly inaccurate, like 50% of the time. That's usually the first test run by normal doctors for Lyme, like your primary care doctor, or 1 of the idiot neurologists I saw. But if you see a LLMD who knows how to diagnose Lyme and co-infections they will use other labs like Igenex or Armin to confirm.

My Western Blot, which was covered by insurance and came up positive with 4 bands (2 of which are Lyme specific), was done through a regular lab used by Northwestern Medicine. So it is possible to get a positive Western Blot through a regular lab, even if it's not technically "CDC positive."

I had 18 vials of blood sent to 2 different labs, including Armin in Germany, and that took a month to come back. Just FYI. If you have a good doctor they will also check things like CD57 and EBV.
Posted 6/17/2021 10:13 PM (GMT 0)
Thank you. I will update this thread as things come in.
Posted 6/17/2021 10:52 PM (GMT 0)
“ The ELISA test for Lyme is wildly inaccurate, like 50% of the time. That's usually the first test run by normal doctors for Lyme, like your primary care doctor, or 1 of the idiot neurologists I saw. But if you see a LLMD who knows how to diagnose Lyme and co-infections they will use other labs like Igenex or Armin to confirm.“

Yup, I first tested with our healthcare (Canada) and the Eliza was negative so they didn’t proceed to the Western Blot.
I then went to a LLND for an Igenex IgM and IgG WB and it was IgM positive.

Fortunately my GP accepted the Igenex results and has supported my treatment for the last 6-7 years with compassion and writes labs for monthly testing to give to my llmd.

Unfortunately she has retired and has moved on to work full time with her skin care business.

I haven’t discussed my lab requirements with her replacement.
I may be shopping for a new Dr.
Posted 6/18/2021 1:58 AM (GMT 0)
Thanks for mentioning that Girlie. Confirms they (my gp) didn't do the Western Blot after the Eliza was negative. Couldn't get a straight answer on that. These new tests will include a bigger spectrum so fingers crossed.
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