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Update: lyme equivocal/indeterminate- anyone else?

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Posted 6/27/2023 12:31 PM (GMT 0)
An update on my son suffering from severe sudden anxiety: his bartonella came back negative but lyme is indeterminate. Cd57 wasnt run due to error 😡. Waiting on copies of tests from dr.

The plan is to retest in a few weeks. Anyone else initial test indeterminate and then positive? I know it can take a while to develop the antibodies but wouldve thut since having symptoms would have been +.

Any thoughts? Ty!
Posted 6/27/2023 2:00 PM (GMT 0)
Lyme sometimes disables the immune system from making antibodies (which is crafty because then your body can't fight it off!) so tests that look for antibodies can be negative *as a result of* Lyme. Frustrating! I tested positive for Lyme on PCR tests (which look for the shed DNA of the bacteria themselves) but didn't test positive on antibody tests until years into treatment when I finally started feeling better.

These complications are one of the reasons that chronic tick-borne disease is a clinical diagnosis, made based on signs and symptoms, and not just testing. Testing is one tool among many, but is not reliable enough to rule out an infection.

It's also worth noting that there are dozens of known species of Borrelia that can cause disease in humans. He could have Borrelia without having Borrelia bergdorferi (Lyme) specifically.

Soon after I became mysteriously disabled by sudden illness, I had ELISA and Western blot tests run through LabCorp (negative) and pushed for a Lyme test through IGeneX (indeterminate). When I finally got in to see an LLMD, he tested me (through LabCorp) for many species of Borrelia, and multiple types of co-infections, since the LabCorp tests would be covered by insurance, before moving on to the specialty labs. Fortunately I tested positive for Borrelia hermsii right away, so he began treating me for "the three Bs" immediately. Later this assumption that people with tick-borne illness usually have multiple infections was borne out by further testing.
Posted 6/27/2023 3:30 PM (GMT 0)
I concur with what Sara Eli posted: you can’t rely on testing.
LLMD’s say the same.
Posted 6/27/2023 5:04 PM (GMT 0)
as above - people who are sick with lyme do not reliably develop the expected antibodies - or develop them early and then lose them - or have them coming or going throughout their illness - or still have them for 20 years later.

its not uncommon for people who tested negative to test positive later during or after treatment - as mentioned above.

basically - serology is a very poor method for any chronic infection - its used because its cheap and because we don't have anything much better - not because its good.
Posted 7/17/2023 2:31 PM (GMT 0)
Garzie, my sons CD57 just came back ok as well. She ran another test that we are still waiting on. Another immune system response test. Do you know what it could be? Thanks in advance.
Posted 7/17/2023 4:13 PM (GMT 0)
My igG Antibody came of as borderline and i am diagnosed by official health Care Provider in Germany so yes. Even some officials (Not the CDC because they are crap) actually recognize borderline Levels.

I have Tested for CD57+ , mcas and Minerals/Vitamins today.

We will see!
Posted 7/17/2023 4:26 PM (GMT 0)

springsjean said...
Garzie, my sons CD57 just came back ok as well. She ran another test that we are still waiting on. Another immune system response test. Do you know what it could be? Thanks in advance.

hi,
i am afraid its very hard to say on so little info

testing is problematic and there are a lot of diagnosis with overlapping symptoms

Chronic Lyme does seem to suppress CD57 + counts a lot of the time - especially long term infection - but not always - and in some people it actually goes high

its not clear if bartonella does - or other organisms - less research is done on that

when you say CD57+ count was OK - what was the result ?

which lab are you using for the tests and what type of tests are they ?
Posted 7/17/2023 4:56 PM (GMT 0)
Lab corp results:

% CD8-/CD57+ Lymphs - 6.6
Ref range 2.0-17.0
Abs.CD8-CD57+ Lymph-178
Ref range
60-360
Posted 7/17/2023 5:01 PM (GMT 0)
My LLMD has statet that, despite many labs saying 60 is the lower value, actually <100 should be atleast considered suspicious. But even with his standards this would be normal.

Greetings
Posted 7/17/2023 5:57 PM (GMT 0)
labcorp test for bartonella ( actually all standard testing for bartonella ) is very poor
some countries - like the UK NHS have with drawn it all together

better labs are:
Galaxy diagnostics - digital droplet PCR with culture and tripple draw
Igenex - multispecies bartonella western blot / immuno blot
Posted 7/17/2023 6:02 PM (GMT 0)
our german health care provider stated that our bartonella igG test is very accurate. lol.
they all have absolutely no idea.
Posted 7/17/2023 8:18 PM (GMT 0)
I had a negative antibody test and PCR test for bartonella, but later a positive PCR test. This testing isn't all that reliable.

However, the continued presence of bartonella could be inferred from repeatedly high bilirubin and vitamin B6. Also it smelled bad and caused skin rashes.
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