posted
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.
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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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.
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
Kaiser Papers, California, Lyme links (some specifics to YOUR State)
(other those in other states, cross-search through Google Advanced Search for: Kaiser+Papers, [your state] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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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?
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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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?
Posts: 32 | From Orange County, CA | Registered: Sep 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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