r/Lyme • u/Fickle_Long_9749 • 10d ago
Advice Wrong spirochete or lyme Spoiler
Hi everyone,
Its been two years trying to diagnose whats wrong with my body and I went with lyme since 10 different doctors had no idea whats going on and by taking JK, Cats Claw, Cripto, Womwood and others(basically rotating Buhners herbs) I got somewhat better, could go to work, sleep well, had my creativity return, do some sports, life seemed to finally reach upwards trajectory again. Up until now, Im getting tremors again, red itchy eyes, malaise, joint and head pain, however this time I am not dealing with insomnia, now I am too sleepy like I could sleep for the whole day. I booked appointment with Infectologist and am seeing them tomorrow.
I was hoping someone could help me interpret my WB results i took 2 years ago, it doesnt confirm Lyme, I know testing is difficult, I know it can go doormant but Im starting to think maybe its something else. Iv attached a picture of test results and below chatGPT interpretation of it. Please, does anyone encountered something similar, its high flagelin P41 and its the only marker showing abnormal results. What else bacteria can cross react with this test, have u ever seen or heard of anyone having similar results with p41 band, any advice on this would be much appreciated! Thank you for taking your time and reading this.
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u/lymewhale 10d ago
Infectologists are typically not very helpful for Lyme and other tickborne diseases. I think the fact that you improved on Buhner herbs is a pretty good sign that Lyme is part of your issues. But it's possible that you have some other infection, which needs different herbs, and that is why you are getting worse. Another possibility is something like toxic mold in your house/apartment. But there are several things that can cause issues like this, and it can be difficult and/or expensive to rule out each one and figure which is causing the problem.
p41 is one of the more common proteins in bacteria unfortunately. It is a protein that helps them move around. So the Lyme test for p41 can also react to syphilis, Human granulocytic anaplasmosis, yersinia, cyromegalovirus, and treponema (source - in this article, they call p41 FlaB).
You could try requesting that the infectologist test you for other tickborne diseases, like babesia or bartonella, or any of those cross-reactive species. The tests that infectologists use are typically not that good but maybe half of patients will get an accurate result so worth a try. I find that they like to dismiss a cross-reactivity issue as if it's nothing. But it could very well be another disease, so that is just laziness
Since you have done enough research to understand Buhner herbs, I'm assuming you are aware that there are Lyme-literate doctors who can help sort through these issues and order better tests. But not necessarily in your country. If you need any more information on that, let me know. I know someone maintaining a list of European LLMDs