Can Neuro Lyme be diagnosed by blood or is lumbar puncture used?

Hi tim,

Welcome to the forum.

The problem with the standard tests for Lyme is that they are terribly inaccurate and shouldn't be relied on for diagnosis. Lyme is best diagnosed clinically by a Lyme Literate Doctor.

Neurological Lyme is just a description for a long-held or advanced infection that has affected the Central Nervous System. It is also referred to as late stage or disseminated Lyme.

When the disease advances this far, it suppresses the immune system. Then the body does not produce the antibodies that the standard tests are designed to detect.

If you feel you have Lyme Disease, you should consult a Lyme Literate Doctor. For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net
If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Do have a look at our "New to Lyme?" thread. There is a great deal of information there with resources to help you get started on your Lyme education. You will need to be very well versed in what this disease is about to get the best care.

Are you sure there aren't any LLMDs in your area? Another option would be to find an "alternative" practitioner - a lot of them are great at dealing with these sorts of things. Maybe with a little research you could find someone?

Hate to be the one to come in and bring you unfavorable news, but lumbar punctures aren't particularly helpful in making or excluding a lyme diagnosis. Infectious disease doctors.....I don't want to go on a rant about how horrible they are, because I haven't seen one in over a decade (but she totally missed my right in your face, obviously lyme, and I don't hear many positive things about ID doctors nowadays, either - though I'm sure there are exceptions to the rule!), but they usually don't know what they're talking about when it comes to lyme, and worse, they'll swear that they do! Dangerous combination.

What doctor noticed your low CD57? Would he/she be able to work with you for the lyme? In all my years of being sick the only doctor to ever test my CD57 was my LLMD. Do you have symptoms? While low CD57 is very indicative of lyme, it's not 100% - there are other things that can lower it, though not too many are known.