Tuesday, May 1, 2012

How to get the new Lyme culture test


(Had some issues, had to repost) Since I got a positive result on the new Lyme culture test that came out recently, I thought I'd share as much information as I can on getting it for others.  Again, this test is supposed to be a 100% conclusive test (it is a direct test) since they try to actually GROW the bacteria versus looking for indirect markers like with Western Blots or ELISA.

  • The lab that does this test is Advanced Laboratory Services. The basic version of the test is $600 and at the time is most likely not covered by insurance. (I got the basic version)
  • Their number is (855) 238-4949. I would recommend calling because of course they'll provide the best answers :)
While it's approved in 48 states and is approved by the CDC it is still in the process of getting vetted for insurance coverage I believe. Expensive as it is, might be a worthy investment (I believe so, anyway!). For example, I have no recollection of exposure, bites, anything like that, and I came up positive. AND my CFS started from a clear case of mononucleosis (or so I thought). Proves it never hurts to check!

  • I got the test done through my doctor's office (a clinic that specializes in CFS, Fibromyalgia, and a few other things called Holtorf Medical Group). They have a contract with the lab that does this culture test so it was very easy since I was able to get my blood drawn there. 
  • Most doctors and other blood draw labs (like Quest Diagnostics) don't have a contract with the lab (I assume). As I understand it, a contract means they can draw the blood for you and are legally responsible for sending it off to Advanced Labs to run the test.
  • From their FAQ page

    Who may order this test?

    Based on the laws of Pennsylvania where we are located, it must be ordered by a medical practitioner defined by them as an MD, DO, CRNP, PA-C, and Certified Nurse Midwife. If you are an ND, and even if you may order tests in the state in which you practice, you still will need to have the test ordered by the type of practitioner on Pennsylvania's approved list. Note that it also cannot be ordered directly by the patient. The practitioner must request a blood drawing kit from Advanced Labs, and once the specimen is drawn, it must be received by us within 24 hours. Please refer to the collection guidelines, below.
  • Also from their FAQ page:  

    What are the guidelines for blood collection to ensure the highest culture yield?

    • Patients should be antibiotic-free for at least 4 weeks prior to collection.
    • Have symptoms and/or signs of active disease at the time of blood draw
    • Patient samples MUST be drawn and shipped Monday - Thursday. Do NOT send any samples on Friday or Saturday as the lab is not open on weekends!
    • Blood must reach the lab within 24 hours of being drawn!!! Be sure to send the specimen out the same day it is collected, and use the FedEx overnight mailers we provide in the kits.
    • It is suggested that the blood draw be scheduled for the afternoons if possible because that is when spirochetemia is more likely. However, be sure that FedEx will do an afternoon pickup for you.
  • Once you have the kit, you will need to find someone who is willing to do the blood draw for you.
Hopefully the practitioner who ordered the test for you will be willing to do so because I had a heck of a time finding a blood draw lab who would do it (until I realized I could just do it at my doc's because of their contract). Hospitals may be willing to, but in all cases apparently it's a legal problem because if they give the sample back to you to FedEx to Advanced Labs the blood is considered "bio-hazardous material" and they are thus liable for it since they drew it for you. It's quite complicated, I can try explain more if anyone has any questions.

I also just bought a book on Amazon called Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections. It only costs ~$14, has 59 reviews and 4.5 stars! I browsed the reviews and what I loved about it is that 1) it's written for physicians, and 2) it's supposed to have references to actual research literature, 2) it references both alternative and traditional therapies/medicines which in my opinion is the optimum for wellness. Not for everybody probably, but I always ask my doc a million questions and want to know everything he knows. And I enjoy knowing the sources that information is coming from. There are so many websites online with information on Lyme, but do not cite any sources. I'm always left wondering if they just made this up on the spot or have any actual literature to back up their (sometimes very wild) claims. I will update with tidbits I find interesting!

No comments: