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.
Posted by willseremak (Member # 41955) on :
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 by willseremak (Member # 41955) on :
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 by surprise (Member # 34987) on :
We've said this to you before:
You keep going up against Kaiser Permanente, a large HMO, who WILL NOT TREAT LYME DISEASE.
It doesn't matter what you show them or test: They will NOT help you.
Get all the pages of all the copies of your tests, and get to a LLMD.
The anger and spinning wheels with Kaiser will just make you sicker. Move on and try to get well.
Posted by surprise (Member # 34987) on :
Also, now is the time a lot of companies have annual enrollment, so the first chance you get:
Dump Kaiser! If you keep them, and get an LLMD and proper Lyme treatment, if you keep Kaiser,
NONE of your prescriptions or ANY coverage of blood tests given by any other Dr. will be covered.
Dump them and move on. We did, and I am relieved to never deal with them again, and the PPO health care is a thousand times better.
Posted by Lymetoo (Member # 743) on :
Amen. Just forget regular doctors when it comes to treating Lyme. You must have a doctor who not only WANTS to treat you, you need one who knows HOW to treat you.
Therefore, go with testing that an LLMD will have confidence in. Igenex is what most LLMD's respect. MDL is OK (usually) and Advanced Labs is OK.
Posted by Keebler (Member # 12673) on :
- Kaiser will not properly assess, test or treat lyme. Accept the fact and move on. It's not right but you can waste time, energy, money (and your life) trying to fight Kaiser windmills. Find another way.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posted by willseremak (Member # 41955) on :
quote:Originally posted by surprise: We've said this to you before:
You keep going up against Kaiser Permanente, a large HMO, who WILL NOT TREAT LYME DISEASE.
It doesn't matter what you show them or test: They will NOT help you.
Get all the pages of all the copies of your tests, and get to a LLMD.
The anger and spinning wheels with Kaiser will just make you sicker. Move on and try to get well.
This is not a thread about Kaiser or about me. I am seeing an LLMD. Am I required to consult you first before starting any new thread?
Posted by willseremak (Member # 41955) on :
quote:Originally posted by Lymetoo: Amen. Just forget regular doctors when it comes to treating Lyme. You must have a doctor who not only WANTS to treat you, you need one who knows HOW to treat you.
Therefore, go with testing that an LLMD will have confidence in. Igenex is what most LLMD's respect. MDL is OK (usually) and Advanced Labs is OK.
This is not a thread about Kaiser or about me. I am seeing an LLMD. Am I required to consult you first before starting any new thread?
Posted by surprise (Member # 34987) on :
Yes, please consult me. (LOL)
Sorry, you have 'Kaiser and how they won't treat me for Lyme' written all over your post.
Just trying to help. Best wishes in your health journey.
Posted by Keebler (Member # 12673) on :
- You wrap it up with:
"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." (end quote)
Such caution is good to share for all - yet also important to know that nothing would have made it possible to get treatment with Kaiser. Nothing. Absolutely nothing.
The same can be said about many doctors who are ruled by the IDSA. It's just not going to happen.
Besides, this is not cookbook medicine. Any doctor who treats lyme requires specialized training and education, such as what ILADS educated LLMD and LL ND have. Knowledge, wisdom, experience, insight . . . all that matters, too. We deserve that. -