Hi TempleLee -
I'm so sorry you're struggling with these symptoms but very glad you found us here. You've received good info and support already, just wanted to welcome you and chime in a bit.
Until you get to an LLMD, t help relieve some of the pain and annoyance, please talk w/ your ND about
an anti-inflammatory herbs like turmeric. My Lyme-friendly neurologist likes to say that most of the Lyme neuropathy band pain is from inflammation. And also discuss some detoxing protocols to help move the toxins along. Diet is key although you probably already have that covered - no sugar, alcohol or simple carbs, reduce caffeine, whole foods and good nutrition, etc. We need our immune systems to help us out and 70% of immune function is in the gut!
I also want to suggest that while CD57 has been used by Lyme MDs and insurance companies are also now wanting confirming CD57 results to cover treatment, we are learning more and more that they are not as informative as once thought. If you need the test and you have results that support what you need, then they are a benefit. But that's about
it. Too many people are reporting low or high results when they should be the opposite. I'm one of those people - started out at 37, 3 yrs later and almost done w/ successful tx and my number has only improved to 54.
Here is another link about
CD57 if you're interested - Aylett you might be interested as well:
www.publichealthalert.org/role-of-c3a-and-c4a-complement-proteins-in-chronic-lyme-disease.htmlI agree with the others that an IGeneX is the only test worth purchasing and it might be worth it in order to get tx covered - depends on your insurance. Some people have had success "provoking" a better immune response by taking antimicrobials like Olive Leaf Extract (this helped me produce a CDC positive IGeneX) or abx 4-5 wks prior to the test. Some people think it might trigger lesser response, you have to explore what will work for you.
The tests and the band criteria (5 and 2) were developed for disease surveillance purposes - not for diagnosis. The CDC tells MDs this but kinda not real obviously so if an MD isn't aware, they'll be clueless... if they even get around to administering the right test. So, it's also important to know how to interpret the bands correctly, which has already been discussed and something you can learn and we can help you with. It's important that your LLMD can interpret correctly this but you can also do it independently.
A good LLMD can help you figure out what your next steps need to be for diagnosis and treatment. Please continue asking questions - if you have any!
-p