Lyme Test WB

Hi wynslowe -

Welcome to the forum! Glad you're here.

Please take a little time and read the "New to Lyme?" thread - link at the top of the page - it has invaluable info to help you understand symptoms, the testing and diagnosis process, finding a specialist to partner with and what your next steps can be.

Regarding your test results - being reactive or abnormal for those specific bands is an indication of the presence of Borrelia burgdorferi, the microbe that can cause Lyme disease so I'm really sorry about that but it's good that you were tested.

Here is a source that might be helpful for interpretation:
lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

There is also more info in the "New to Lyme?" thread.

In short, the band interpretation:

18 is a flagellin fragment of a microbe

23 is actually specific for Lyme or Borrelia burgdorferi (Bb) - it is a reaction to the outer surface protein C of Bb component so this is the band that indicates an absolute positive

93 uknown but thought to be the same protein as in band 83, which is specific for Lyme as well.

The Western Blot (WB) is a serological test so it looks for an immune response to specific microbes or DNA parts of microbes, not the microbe itself. But Lyme WB and other serological tests are known to be 50% accurate at best because people are often very ill when testing and their immune systems aren't functioning well, therefore the immune response is too low to be adequately detected. Also, the Bb microbe has evolved to disable the immune system's response and fly under the radar. It also often leaves the blood stream to live within tissue, so it's tough for the immune system to find it.

Here are 22 Reasons the tests are often wrong:
whatislyme.com/22-reasons-why-your-lyme-test-may-be-wrong/

Also, the Bb microbe's disarming of the immune response also makes the typical IgG vs. IgM interpretation unreliable so IgM doesn't necessarily mean current or new infection and IgG doesn't necessarily indicate an old or prior infection. MDs often misunderstand this.

All this to say, it's likely that the CDC (and therefore most mis-informed MDs) will interpret your test to be negative since it requires a minimum number of specific IgG or IgM bands. But this is like requiring a specific number of pregnancy tests in some ways. If your immune system responds to Lyme-specific bands (which yours does), Lyme (Bb) and/or components of Lyme (Bb) DNA were found.

Unfortunately, the CDC has looped these tests into the case surveillance data and testing protocols they have implemented for the primary purpose of tracking case evolution or trends for Lyme disease throughout the country. They placed a disclaimer on their website directing MDs to diagnose Lyme w/ a clinical diagnosis, not to solely use these tests and some states have also included this statement on the test results they publish but not all states.

All this means is it takes a specialist to diagnose Lyme, given the complexities and difficulties with testing. We can help you find a specialist near you. The best way to do this is to create a new thread with "Looking for an LLMD in ______" in the title and indicate the nearest city or metro area you can get to.

You can also email one of our top mods Traveler or Girlie for a specific list of Lyme specialists in your area to consider. I'm also a mod but not around as consistently but will help however I can.

Here are a few more resources Traveler likes to share:
​
​​Y​​ou can 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​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: [email protected]​

ILADS has their own referral system as well:
​​​ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others have a very narrow view of how to diagnose and treat Lyme that ignores most cases, believe it or not. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Please don't hesitate to ask any questions that come up!

-p

Post Edited (Pirouette) : 5/13/2017 1:25:22 PM (GMT-6)

thank you for the information