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Posted 10/31/2013 11:56 AM (GMT 0)
The following are all by CDC/IDSA standards

1. NEVER use Quest Diagnostics. Kaiser tested me 3 times and all times no more than one positive band. I strongly suspect that they don't spin (spinning down samples is essential to prevent lipoprotien binding - those are the bands they test) their samples before shipping and/or wait to long to test (always express ship to prevent lipoprotein bonding). (you must always express ship overnight and send out Monday - Wednesday so it never sits over a weekend or holiday). Always wait 4 weeks after any antibiotic treatment or you may test negative - many people here say wait 10-14 days but the studies I've read say 4 weeks. If you take a Quest test you will FOREVER loose an Infectious Disease (ID) doctor even if you later test positive at another lab.

- I can not overemphasis that you should NEVER EVER take the Quest Diagnostic test. Even if you later test positive by a insurance doctor accepted lab like Stony Brook they will never listen once they see a negative Quest Diagnostics. Note: The head of Quest Diagnostics bragged in 2005 that his lab produces 47% less false positives than any other lab. (this was his way of signalling to insurance companies that if you use them that they can get the negative results insurance companies want.)

2. Stony Brook University Medical Center. This and Columbia University are the two most respected research centers for Lyme by conservative ID doctors. I tested IgM 2/3 positive 1 IND, 9/10 IgG positive 1 IgG IND. They also test for bands 31 & 34 with request for no extra charge and I tested positive. The ELISA is only $158 and the western Blot $252. Insurance companies, even Kaiser, often accept these results because the lab has been around so long and they have a Lyme research center.

2. IgeneX: IgM 2/3 positive + 1 IND, IgG 8/10 positive. Also test all bands for IgM & bands 31 & 34 for IgM and IgG and I tested positive for both. Insurance doctors hate IqeneX. If you do bring them result they will ignore them. If you test positive by CDC/IDSA standards as well as the alternative standards that IgeneX uses you may try to point this out. However, even a positive CDC/IDSA standards will be ignored just by mentioning IgeneX. It's if you are using a LLMD but useless with any other doctors. Try Stony Brook first.

3. Medical Diagnostics Labratories L.L.C. IgM 2/3 positive, IgG 7/10 positive. Insurance company doctors don't know this lab. It's ok if you are using a LLMD but useless with any other doctors. Try Stony Brook first.

4. Advanced Laboratory Services Blood culture. Great with LLMD, but useless with insurance company doctors. I tested positive after only 6 days, but the doctors gave me an editorial that came out in Jan 2013 a month before the Sapi study. I pointed out that an editorial is not a study and that they editorialized even before the study release, but this made no difference. I understand through my emails with Advanced Laboratory Services that they will be having a response to the Johnson study within a week. They also have a second independent test like the Sapi study coming out next month. If there response is strong, or Johnson has to retract part or all of what she said about Sapi, or the new study confirms Sapi then conservative insurance company doctors may have to accept the test as blood cultures for bacteria have been considered definitive for half a century. I would say to do the culture for a LLMD and only do it for a typical ID insurance doctor if further studies support it or Johnson is forced to at least partially retract.

- My experience: Once you have a negative Quest you are screwed. I tested positive by IDSA/CDC standards through multiple labs and had a positive blood culture and Kaiser refused to treat me.



I should note that no matter who you have draw your blood that if the following rules aren't followed you will almost certainly test negative:

1. If the lab does not spin down the sample before shipping you will test negative.

2. If the lab does not express ship you will probably get less positives. 1 day shipping max.

3.Draw blood only Monday - Wednesday so your sample doesn't wait over a weekend or holiday. Personally I would only draw on Monday or Tuesday.

4. Wait 4 weeks after being off antibiotics before drawing blood.
Posted 10/31/2013 12:10 PM (GMT 0)
A note on the C6 test.

According to the Ember monkey trials if you every have taken doxycycline you will test negative by C6 100% of the time. Also, according to Embers the C6 is positive only 60% of the time after 4 months and after 6 months it is useless. The study used monkeys purposely infected, then tested, and then dissected. C6 is a test that some of the IDSA panel that made the rules have a financial interest in.
Posted 10/31/2013 12:43 PM (GMT 0)
Wow, thanks. Great info to have especially since I am in the throes of testing with no confirmation of anything yet. I have had a high negative ELISA and tested IGM positive on WB at bands 39 and 41, both ordered by my PCP. These were sent to Quest. I plan to have another test - either iSpot or another WB. Will check with Stony Brook. Thanks again.
Posted 10/31/2013 6:02 PM (GMT 0)
iSpot only works for very recent infections.
Posted 10/31/2013 6:07 PM (GMT 0)
Band 39 in is the most specific band for Lyme. It is the inner most part of the bacteria and unlike some of the other bands it is not present in any other Borrelia except Borrelia Burgdorferi. Most LLMDs will believe this band alone means you are positive.
Posted 10/31/2013 6:21 PM (GMT 0)
that's a scary thought how a negative test can haunt you for the rest of your life??

Does anyone know if that's absolutely true?

I mean, how would an ID even know you had the Quest test if you didn't tell him/her about that test?

My original drs office uses Quest labs. I tested negative. 2nd office, Geisinger Medical Laboratories. I tested negative on that too, but it was a test given while I was on doxycycline, which I read here on healingwell isn't the thing to do (taking the test while on antibiotic).

I find it scary to even think that those two tests would preclude me from any decent treatment in the future. :(

that's why I ask about how much of an albatross those negative tests would be to those patients who had them
Posted 10/31/2013 6:33 PM (GMT 0)
Good post but MD Labs is not very good with their Lyme WB testing. I was only positive for one band total through them (41 on the IgG) but through IGeneX I had multiple positive bands (31, 34, 41, 83-93, IND 39) on the IgM when I had none with MDL. The one band they did pick up I was quadruple positive on with IGeneX.

Post Edited (ToddPaul) : 10/31/2013 12:38:45 PM (GMT-6)

Posted 10/31/2013 7:54 PM (GMT 0)
A few other things to understand about testing - no matter what lab is used - is that if it's a Western Blot, it only catches 50% of those that are actually infected - the other half get false negatives. ELISA is even worse.

The longer one goes without proper treatment, the less likely they are going to test positive. As the bacteria "dig in" they move out of the blood stream and into the tissues (they like collagen best, not the blood stream) and they go through activity phases, and if the blood isn't drawn while the bacteria is active in the blood stream, that person will not get a positive result - no matter how sick they are.

If there is a co-infection of Bartonella or Babesia, the likelihood of testing positive goes way down as well - no matter how ill you are.
Posted 10/31/2013 7:55 PM (GMT 0)

willseremak said...
Band 39 in is the most specific band for Lyme.

Willseremak, do you have a link that you could share on this? I'd be very interested to do some more reading on it!! Thank you! :-)
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