Lymes Diagnosis

[cbb40]

I had a positive western blot come back from a neurologist last week.  The test shows Positive for Lymes (0-4 bands) : positive IgM with 2 bands (p58 and p41 kDa) and negative IgG with 2 bands detected (p41 and p39).  I have been referred to infectious disease tomorrow because the primary says it may be a false positive and that she does not want to provide antibiotics.  The symptoms started about 4 weeks ago in October when I went to the primary (flu like, severe fatigue, weakness, muscle and joint pain), but have been significant enough to warrant a blood work up from the neurologist.  Could this be a false positive like the primary said?  Thanks for any help in advance.

[Asdbgbq]

You are MUCH more likely to have false negative than positive. The western blot can be "read" in different ways but the fact you are exhibiting at all means treatment should start.

[ree427]

Given you have symptoms, I highly doubt your test is a "false positive". I agree with Jackie about seeing a Lyme specialist. Lyme specialists or LLMDs also test for co-infections which are often missed. Please don't wait. The longer you have Lyme, the harder it is to cure. Not to frighten you, just speaking from experience.

[JackieCalifornia]

let us know how you do -- we're usually hanging around here -- it's good company.  :)

[cbb40]

Thanks very much for the information.  If you or anyone have referral information on ILADS in the Chicago area I would be grateful.  I will continue to look on my own as well, thanks for the sites.

[JackieCalifornia]

Greetings, and welcome to MedHelp Lyme --

You may be aware that there is a split in the medical community about how serious Lyme is or isn't, and how accurate the tests are or aren't, and whether and when to treat it.

Those often lining up on the 'don't treat it' side are ... neurologists and infectious disease (ID) docs.

They mean well, but the standards by which they are practicing are ignoring decades of new research that says (1) Lyme IS serious, (2) the tests are lousy and should be taken not as the last word on whether you are infected but instead as a clue, (3) the diagnosis should not be based on the lousy tests, but instead on clinical signs and symptoms (your history and the way you feel), and (4) treatment needs to start quickly to get the best jump on eradicating the infection before it gets established.

There are other tests that Lyme specialists order that are more accurate, but many docs, like yours, don't use them or respect them for reasons unknown.

My best advice to you would be to find a Lyme specialist in your area and get yourself there very quickly.  Take a copy of the current test results with you, and keep the appointment with the neuro, and personally I would not tell the current ID and neuro that I was seeking another opinion, because docs are very very nasty on this topic.

ILADS [dot] org is the main website for docs who understand Lyme is very serious and needs to be treated quickly, and they may have a referral function there, I don't recall at the moment.  If you tell us generally where you are (like 'Dallas TX') we can try to dig up some names for you.

The search I usually do online is modeled this way:

Lyme Dallas TX

and see what pops up.  Also look at websites like at lymenet [dot] org or lymediseaseassociation [dot] org for their referral functions.

I agree with your approach, but I'm not medically trained, just have been where you are.  Let us know how we can help -- best wishes!