posted
I notice that Quest Diagnostics, my HMO assigned labs, offer IGg, IGm Western Blot, PCRs, etc. Is there any reason why I shouldn't have Quest do these tests? My insurance would pay for it. Or is there something special about Igenex? Would like to know I have an appt with primary next week to discuss. And, does anyone know what Quests Lyme tider(?) is?
Posts: 386 | From Southeastern PA | Registered: Oct 2007
| IP: Logged |
posted
There is a good chance the Quest test will come back negative even if you are really positive. That is much less likely to happen with igenex as their test is more accurate. I would figure out what your doctor will do if the Quest test is negative even if you are displaying symptoms. If they will then refuse to treat you and refuse to get the other test. You may want to convince them that you just want to go straight to the igenex test. You do not want a falsely negative test holding up your treatment if you really do have Lyme disease.
Posts: 526 | From NJ | Registered: May 2007
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I would go with Igenex even if I had to pay out of pocket.
I believe their web site will give you more information on the testing for lyme disease.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
posted
Has anyone had the Quest Western Blots and found them to be less sensitive than those of IGenex?
Posts: 386 | From Southeastern PA | Registered: Oct 2007
| IP: Logged |
posted
I had the Quest test more than once and it never showed me as having Lyme even though I do.
Posts: 526 | From NJ | Registered: May 2007
| IP: Logged |
posted
Do you have any idea what Quest does as it's primary lyme test? I have to ask my doc whether they did a WB already. Sheesh. So much to figure out.
Posts: 386 | From Southeastern PA | Registered: Oct 2007
| IP: Logged |
I did not know what I had was Lyme and I dont remember getting bit.... After being told I tested positive for Lyme it all made perfect sense as I had most of the symptoms....
Doctor still said I "did not look like I had Lyme"...
Posts: 347 | From WV | Registered: Jan 2007
| IP: Logged |
posted
Which one(s) were done are mostly likely the decision of the doctor so to ask which one the lab does as the primary test may not be a relevant question to ask. Your doctor should know which one was done, and if you have the results it should probably say which one was done.
Posts: 526 | From NJ | Registered: May 2007
| IP: Logged |
posted
I was negative by Quest WB, yet positive three times by Igenex WB and one time by Central Fla. Research Flow Cytometry. I never received detailed results from Quest (which bands were positive/negative)-only a result of "negative". This is one of the many benefits of the Igenex test. You can research your positive bands and decide for yourself whether you should pursue the Lyme diagnosis, rather than blindly accepting a negative result.
Posts: 418 | From NJ | Registered: Sep 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Quest -- and other labs like it -- completely leave out testing for bands 31 and 34 -- bands SO specific for lyme that the failed lyme vaccine was made from them.
Their reason for leaving them out of the western blot???
"For all we know, you could have had the vaccine!"
Yeah, RIGHT!!!!
In other words, you could be shriekin' positive on those bands, but your Quest test would return "negative." You'd never even know it.
SAVE your money.
Test with IGeneX.
And the truth of the matter is, if your doctor doesn't already know all of this, it's time you found another doctor.
This is too important. It can mean the difference between your insurance paying vs. your insurance balking.
It can mean the difference between your doctor believing you have lyme vs. your doctor thinking it's all "in your head" and pushing you out the door with some anti-depressants.
If in fact you DO have lyme, IGeneX is your best chance to really find out. Don't blow it on a cheap lab.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Quest and other labs are NOT tick borne specialty labs, they use the CDC (Center for Disease Control) test kits that are not diagnostic and are unreliable. Most people with Lyme will test negative using the tests available at Quest & other commercial labs.
Education of this disease is important, start by visiting Ilads.org - here is a small portion from their website "Basic Information" regarding the test: ~~~~~~~~~~~~~~~~~
The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.
The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.
Of patients with acute culture-proven Lyme disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For ``epidemiological purposes'' the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.
When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot�) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.
My IGeneX Western blot - from blood drawn three weeks later - showed for IGG: 3 bands positive, 2 indeterminate, and for IGM: 3 bands positive, 3 indeterminate. (Indeterminate is essentially a very weak positive.)
Quest - and all the standard commercial labs - test for 8 bands, while IGeneX tests for 16.
I know a number of people with Lyme whose Quest Western blot was negative, which delayed their diagnosis and treatment.
Rely on Quest results at your peril.
Posts: 227 | From South of the North Pole | Registered: Jan 2007
| IP: Logged |
posted
Thanks for all of the feedback and advice. I give in. I'll go with the Igenex. Do you all agree that I should just go with tests 188 and 189 to start? (If it's relevant, I was bitten by a deer tick about 13 months ago. Will these tests still be able to pick something up?)
Posts: 386 | From Southeastern PA | Registered: Oct 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Smart move, Thomas!!! Good for you!
Yes, those are the best choices for detecting lyme, especially on a budget. It's about 190.00 for those two.
At some point, you really should consider co-infection testing, such as testing for babesia and the others (bartonella, ehrlichia, etc.)
It is important to SEE the results of your IGeneX tests yourself.
Do NOT rely on your non-LLMD doctor to simply report the results to you.
For example, he may tell you "It's NEGATIVE."
That may mean it's negative according to CDC standards, i.e., didn't meet criteria for reporting to the CDC. But that is NOT the same as negative for antibodies for lyme!! So please post your results here. You may find that your doctor is oblivious to which bands represent lyme infection and he may totally blow off a meaningful test result.
Now, IGeneX will send you the test kit free if you call them. Your doc will sign off on it and hopefully direct you to a lab to draw the blood and send it off on a Monday or Tuesday in the prepaid envelope.
It's the smartest thing you can do for your future. Good luck!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by thomasx: Thanks for all of the feedback and advice. I give in. I'll go with the Igenex. Do you all agree that I should just go with tests 188 and 189 to start? (If it's relevant, I was bitten by a deer tick about 13 months ago. Will these tests still be able to pick something up?)
Good question.
YES.
IGeneX is definitely your best best -- especially if it's been a while since you were bitten.
As mentioned before, they test for two bands that tend to show up with later lyme -- bands 31 and 34 -- bands which other labs don't bother even testing for, despite these bands being extremely specific to lyme!!!
I was totally negative for lyme via Quest.
With IGeneX, I was CDC positive. In fact, I had a 31+++, something I would never have even known with my idiot neurologist and his Quest nonsense.
Good luck. Remember -- if you get your kit mid-week or later, do not draw blood and send it; wait till Monday or Tuesday to do it.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
tailz
Unregistered
posted
I was negative on Quest tests until this past spring, so I was surprised to have finally tested positive on a Quest test. I tested positive first time on an IGeneX test, but so far, all coinfections have remained negative by either lab.
Look into the possibility of ES/EHS though. I think EMF exposure has a lot to do with chronic Lyme.
IP: Logged |
posted
Is Wednesday OK to have it picked up by FedEx? Or should I try to stick to Mon/Tue?
Posts: 386 | From Southeastern PA | Registered: Oct 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
You're on the east coast. IGeneX is on the west coast. If it's 2-day air, as I suspect, it won't get there till Friday, so I doubt they'll get to it till Monday.
I would wait until Monday, if it was me. The fresher the sample, the better.
That is not to say a very short period of refrigeration will necessarily hurt your sample. I imagine the lab would tell you that it won't. I simply like to maximize the chances for a perfect and fresh blood sample.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
OK. So on a related note. How do I justify to my doc (so that he can justify to the insurance company) that I need to go to Igenex instead of my capitated provider, Quest? 1. The Igenex tests cover 16 bands vs. 8 bands in the WB, so it's been commented here. What else? I need hard facts.
Posts: 386 | From Southeastern PA | Registered: Oct 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Your insurance company is UNLIKELY to pay for it, and definitely not up front.
YOU have to pay upfront, then submit it to your insurance company.
The likelihood is that they will only reimburse the normal amount that they would pay a company like Quest. In my case, it was around $50 or so.
And that is that.
Therefore, the doc does not need their permission or approval.
Nor do you.
You may tell the doctor that they test WAY more bands than Quest or any other lab, including the two bands used to make the vaccine from, bands that are specific to lyme. Bands which tend to appear in late lyme. And you would like to do a western blot only ONE TIME, so it may as well be the best. And that IGeneX is a fully credentialled lab. (See their website by the same name.)
Why would someone want to use a lab that tests for fewer bands than a lab that tests MORE bands?
Also, IGenex tests for more STRAINS of borrelia than other labs.
And it is YOUR money, and YOUR health!!
If he starts up about getting an ELISA first, you may remind him that even the conservative Johns Hopkins found a dismal failure rate of ELISAs of up to 75% at detecting Lyme!!!
I really wish you had an LLMD. I suspect that soon you are going to wish the same thing!!
Good luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I agree with doing it on Monday since you're a long way from Igenex.
I paid for mine upfront and nine months later my insurance finally paid for it. I had to nag and nag and nag. Well worth the nagging though, I must say!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic