Hi toridemi -
First, I'm thrilled that you have been feeling well! That's awesome.
I'm sorry about
your niece - I'm glad you came back and posted.
I saw a wonderful, Lyme-friendly neuro last year. I had developed very frustrating neuro symptoms - seizures, vertigo, tinnitus, disorientation, in addition to my typical neuro-psycho sx (like the anxiety - these are by FAR my worst and scariest sx), cognitive problems, numb and tingly fingers, toes, outside of my legs, and my legs sometimes were slow to receive "messages" from my brain for how to walk and move.
ALL of the 6 or so typical tests he ran were normal. I did a sight test, hearing test, the toss me around in the astronaut-training chair (sorry - forgot what the test was called), MRI, EEG and one other test.
He shared that he feels most neuropathy is caused by inflammation. At times anti-inflammatory has helped, other times it has not. But I've also made good progress w/ tx since all these tests, too.
Please share this sx questionnaire - sometimes that's helpful to see the sx in context:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789Also, MDs are NOT trained in how to diagnose or treat Lyme disease. They generally follow decades-outdated protocols so it's critical your niece sees an ILADS-trained Lyme specialist who knows how to properly diagnose.
The primary reason the Lyme tests are 50% accurate, at best, is because the testing methodology and tests and interpretation protocols were developed entirely for CDC surveillance case data to follow disease trends, NOT for diagnosis. So the two-tiered protocol (which requires an initial ELISA test that is probably more than 50% inaccurate), and the interpretation criteria are SUPER restrictive, in order for surveillance data to adhere to optimal accuracy standards, as opposed to "catching all of the cases".
The CDC has placed a disclaimer regarding the surveillance purposes for the testing protocols on their website and some states now require labs to include it on their test results - that the tests are NOT to be used solely for diagnosis and that Lyme disease is a clinical diagnosis. But MDs are insanely uneducated about
this, and the CDC doesn't do a whole lot to clarify the confusion.
Other reasons the tests are generally inaccurate are because the tests are serology tests, which means they rely 100% on an effectively functioning immune system.
- Yet some people are too sick and their immune systems are too compromised to produce enough antibodies for the tests to detect.
- There is a tight "window" of opportunity - often, the tests are administered too early, before the Borrelia burgdorferi microbe has a chance to stir up a detectable level of immune response or antibodies. Or, the testing was too late and the Bb microbe had already "disabled" the immune response, which it has the capability of doing.
- Or the Bb has already generally left the bloodstream to set up camp in other tissues (Bb generally reproduces in the bloodstream then goes back into hiding).
- And often, the test results are actually positive but the they are not interpreted correctly - for two reasons:
a) the surveillance protocols require a minimum of specific bands to be positive. These bands include multiple "lyme-specific" immune responses to the Lybe microbe and DNA components. How "pregnant" do you need to be to be pregnant?
b) back in the 80s and 90s, two specific bands 31 and 34 were used to develop the early Lyme vaccines. In a colossal act of ignorance (and exhuberence because they were just so sure the vaccines would be successful), instead of successfully screening people who had actually received the vaccine, the CDC simply removed those two bands (31 and 34) from the possible bands that would indicate a positive result. THIS is the primary reason why IGeneX Western Blot is the more reliable WB test (it does include 31 and 34 bands) yet regular MDs aren't even aware of it.
There are several more reasons why tests are often inaccurate - here is a good succinct list but if your brother has any questions, we can answer:
22 Reasons tests are wrong:
whatislyme.com/22-reasons-why-your-lyme-test-may-be-wrong/Hope that's helpful. If not - we can share more!
-p
Post Edited (Pirouette) : 6/15/2017 8:16:44 PM (GMT-6)