Friday, January 18, 2013

Free Lyme culture test for certain states - for research

Let me first start with a fun fact I got today from my CFS doc during my appointment:


60-70% of the patients that come to him with CFS and Fibromyalgia turn out to have Lyme disease. 

Quite a shocker, let me tell you.

Which leads me to...saw this article about how Advanced Laboratory Services are starting a research trial to create a faster, cheaper Lyme culture (faster than the $600 test that takes up to 3 months that they currently have). They run your sample through both the full, well-established test, and through the new methods as part of the research study free-of-charge. Someone else posted on the forum where I saw the article that only certain states qualify (i.e. your doctor has to be registered in that state) for the research trials:


CA, CT, FL, IA, MD, MA, MN, NH, NJ, OR, PA, UT, VA, VT and W

 and they're still in the process of sorting everything out, the testing hasn't begun yet.

The first step seems to be to have your doctor fill out a form and contact Advances Lab Services. From the article:


Regular collection kits can be ordered by practitioners online by clicking on “Order Kits” (tab at top right). Click here for website.  Research kits will only be sent after a practitioner has registered with the lab and each patient has been pre-qualified – there is a form that the lab will provide to interested practitioners.  Practitioners can email the lab at questions@advanced-lab.com.

Advanced Labs will only talk to doctor's offices, so it won't do any good to talk to them directly unfortunately. I hope this is somewhat helpful to people! If you need a doc to write you a test (they're in California, but you can reside anywhere to see one of their doctors--they do Skype/phone appointments and such-- my CFS doc's clinic can provide a doctor. However, they're out of network and might not necessarily be covered. but one appointment is probably cheaper than the original cost itself test itself, if you can get it free.

7 comments:

angela said...

I have talked to my doctor here about this but I keep getting told that there is no lyme disease in Australia I don't know I think they are wrong and these figures seem to back me!

DolceVita said...

Angela, I'm sure you've already seen this, but if not might be a good place to start:
http://lymedisease.org.au/about-lyme-disease/myths-surrounding-lyme-disease-in-australia/

They don't cite sources for their claims but maybe some Googling will find something more concrete and even a Lyme literate doctor? So frustrating how stubborn the medical community can be!

Shelli said...

Hm, this might be something I should look into. Except, I don't like my doctor and don't feel up to going into her office again. Wish I could order it myself. Thanks for providing some good information!

Kanon said...

Is it important to get this Lyme culture test? I have CFS, and a Lyme titer came up negative way back in the early 1990's, so I assumed Lyme isn't something I had to worry about. Am I wrong?

Kanon said...
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DolceVita said...

Shelli, I've become somewhat of a Lyme evangelist so I definitely recommend looking into it!

Kanon, All I know is what I've learned from the internet and my doctor. Doing a culture is the only direct measurement of Lyme. All the other tests are indirect because they look for antibodies (like the Lyme titer) or genetic markers so they are not exact. When looking for antibodies for example, if you're no longer in the acute stages of Lyme infection (first few months) then your body stops producing antibodies consistently. So people who are chronically ill can come out negative. Good luck with whatever you decide on! If you end up getting tested, let me know the results as I'm quite curious! Thanks.

Adrianne said...

Angela my doctor also practices in Australia - google Dr. Nicola McFadzean