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A MyLupusTeam Member asked a question 💭
Grand Rapids, MI

In June of this year I found a tick imbedded on my abdomen and think it was possibly there for several days. In 3-4 days I was quite ill with fever, severe fatigue, muscle weakness, joint pain, and nausea but no rash or infection of the bite site. I saw my primary and we did a Lyme disease test which was negative. I recovered but only to about 60% after a month of just not feeling right. I am a cancer survivor and have been through chemo and was feeling that same level of fatigue (down the bone… read more

September 8, 2024
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A MyLupusTeam Member

Trust your instincts. The current FDA approved two tier testing (Elisa and Western Blot) test for antibodies to the infections. While you likely mount a sufficient IgM response eventually if you test too early there may not be enough antibodies present to be detected. The IgG response comes next but Borrelia (Lyme) bacteria can suppress that response. Another issue is doctors often use the CDC reporting criteria (5 positive bands) in error. A clinical diagnosis is based on 2-3 bands. Sorry I can’t remember specifically. So a doctor might tell you the test was negative but that might be because they’ve confused reporting criteria rather than diagnostic criteria. A “CDC positive” test result is five bands so you could have three or four bands, CDC negative but from a clinical perspective the test is actually positive. Get yourself a copy of the tests.
PCR is much better for testing.
Another important issue is any tick likely carries multiple pathogens (bacteria, virus, parasite). You can easily have a combination and the Lyme test will detect none of these.
Here is some information on testing https://www.treatlyme.net/guide/best-lyme-tests
Lots of other great information on Dr Marty Ross’s website. His 2024 book Hacking Lyme has been an essential guide for me. He also does frequent Q&A’s (Thursday evenings?). Info should be on his site.
I did the Igenex tests, found five infections.
If you would like support while you are looking in to Lyme, please consider attending a Generation Lyme Meetup https://genlyme.org I’ve been with them several years and now regularly host them. Wednesday evening metro is called Burning Questions. It’s an open floor to ask about treating, symptoms, treatments, etc
Hope this helps and welcome to MLT.
Just in case you want more info I’ve added you to my team. Lots more in my story. 🤗 ~Eileen🌻🐢

A Review of Lyme Infection Tests: Pass or Fail
A Review of Lyme Infection Tests: Pass or Fail
September 13, 2024 (edited)
A MyLupusTeam Member

I have Lyme disease and I don't know if you're aware of this but medical doctors tests for Lyme are pretty inaccurate. They often do the Elisa or the western blot test and research shows those are just not reliable. I don't want to scare you, but just share information since I have Lyme. I tested positive for it by at least 4 different doctors who did saliva and urine tests. If u do in fact have Lyme, the sooner u catch it ,the better! I know you were asking about a Lupus diagnosis after a tick bite, so I don't know if this answers your question. I've had Lyme since childhood and just a year ago was diagnosed with Lupus now too.

September 10, 2024

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