Confusing Lyme Diagnosis - Can you help?

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Joined: Thu 7 Apr 2016 23:44

Confusing Lyme Diagnosis - Can you help?

Post by kaitlin_erhard » Thu 7 Apr 2016 23:55

Hello! I am 25 years old. I have recently been tested for Lyme, West Nile, and EBV virus.

My lyme results were as follows:

IgG P58 Present

IgG P41 Present

IgM P41 Present
IgM P23 Present

Lyme IgM WB Interp. Positive

(All others were absent)


My West Nile results:

West Nile Virus IgG Positive

West Nile Virus IgM Negative


EBV Results:

Negative for the early antigen results

EBV Ab VCA, IgG 96.4 -- Reference Range 0.0-17.9
EBV Nuclear Antigen Ab, IgG 37.4 -- Reference Range 0.0-17.9

(Both positive)

My PCP sent me to an Infectious Disease Specialist, and I left more confused than when I arrived.

My symptoms have been going on for months. Fatigue, Rashes, Migratory Joint Pain, Headaches, Light Sensitivity, Sore Throat are among some of the symptoms I have been experiencing.

Does anyone else share Lyme results like this?

I really want to find some kind of management/treatment for my symptoms, and I am hoping to educate myself more and more on this. Can anyone help me read my results more efficiently than I currently can? Thank you so much!

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Location: NY, USA

Re: Confusing Lyme Diagnosis - Can you help?

Post by ChronicLyme19 » Fri 8 Apr 2016 22:55

First welcome, and I'm sorry you aren't feeling well. There are many good threads here if you search them on the meanings of test results and specific bands.

It sounds like from your test results that you have been exposed to Lyme. There is no test at the moment that can distinguish a Lyme infection in the past from a current infection. Typically, IgMs will signify an active infection and IgGs will signal a past infection or one that you are almost over. One of the big debates with people with chronic Lyme is the meaning of the IgM bands, since in those people there is a high rate of IgM band 23 and 31 staying positive. To complicate things, in some people bands have also been known to appear and disappear as the disease progresses. Right after the tick bite, I had bands 45, 58 and 41 positive, but as I got sicker, I only now have bands 23 and 31 positive. Some of the bands also may turn positive because they also indicate other diseases. I would read through the other threads to get a good summary of those.

It certainly sounds like you could still have an active Lyme infection given your IgMs and symptoms. However, Lyme is a great imitator, many things share the same symptoms as Lyme, which makes a Lyme diagnosis really hard because we don't have a good test for active Lyme. Additionally, you could be the poor person who has BOTH Lyme and another diagnosis that shares symptoms with Lyme.

How long have you been sick? Do you remember a tick bite? What do your rashes look like? Have you been tested for co-infections? I'm assuming you are in the US, the CDC has some pictures of a-typical lyme rashes up here:

One thing I recommend to anyone who is chronically ill, Lyme or not, is to keep a detailed journal as best you can on your symptoms, what day you have them and how bad they are. This will help you describe what's going on to your doctors and see if things are getting gradually better or worse.

The other key thing is to trust your gut, you know your body better than anyone else. If you are sick, keep asking your doctors questions until they get to the bottom of it. That's what they are there for. Don't let them brush of chronic problems or tell you it's all in your head (Lyme can certainly cause psych issues too tho).
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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