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Avatar universal

41 and 66 reactive

I have been having a problem with swollen lymph nodes (painful and red) in my groin. After lots of testing, they finally did a western blot due to other presenting lyme symptoms. Doctor says according to cdc recommendations, this is negative because just two bands were reactive. Anyone know whether i should press on? I know both of these are not very specific, and I'm so frustrated.
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Yes, you should press on!!  Because there are no definitive tests, Lyme is a clinical diagnosis (and the CDC says this) based on symptoms.  It might depend a little on which 2 bands (some are specifically borellia, others can be triggered by other bacteria).  I had several Lyme-specific bands but they were not strong enough to exceed the CDC threshold for reporting, but all that means is that I've been infected for a long time and the bacteria have turned off my immune system so I don't have enough antibodies to make the test threshold (yes, these buggers are very nasty and can influence a lot of things in our bodies).  Also remember that the CDC set the levels to definitively track the disease, not to diagnose it.  If you have multiple symptoms and the other potential causes have been ruled out, if I were you I would pursue treatment for Lyme.

Having said that, the disease hits everyone differently and there is no single treatment, so I'm afraid you may have more frustration ahead.  But I found it a comfort to know that we had identified the probable cause of my issues, and therefore there was something we could try to address.  I have been in treatment for over a year (having been very sick for over 6 years) and even though I am not well, I am a lot better than I was a year ago, at least most days!

So, keep at it, and good luck to you!
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Avatar universal
Sorry, I missed the bands identified in your question title.  They are non-specific... make sure the other bands didn't have a reaction that was below the CDC threshold - they are a reaction but they would not be reported in the summary, and it would tell you a lot if you have fainter reactions to borellia.  Have you also looked at some of the common co-infections (bartonella, babesia)   to see if your symptoms match  one or more of them?  Treatment at a high level is similar, but the specific antibiotics may be different.
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