posted
HI, My doctor sent out my blood to quest lab for a western blot test. All the bands came back non-recative/negative for lyme. So, does this mean I do not have Lyme? Does anyone know how accurate this lab is? Thanks, Marcie
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
The problem isn't really the lab - it's more of a problem with the test. Many people do not test positive for Lyme which is why it is supposed to be diagnosed based on clinical symptoms and not the blood test alone.
I have had 8 negative Lyme tests.
Hope that helps!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
read the post below about cardiac echo and gastric emptying, especially the response by lymie tony z.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
I don't believe they are very accurate, but that is just my experience with them. We used Quest for our children, and all tests came back negative, but when retested by our local Children's Hospital the same tests all came back positive or equivocal.
Igenex in CA is widely regarded as the most accurate for Lyme Disease testing via the Western Blot. Another option is Bowen in FL. Hope this helps.
Posts: 89 | From Ohio | Registered: Mar 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Here are some reasons why you can still have lyme & test negative:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Could'nt agree more TUTU...zman
KP...the problem IS DEFINITELY THE LAB!
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
We have used quest alot and have had generally positive results, my son and SO twice on their WB. My ELISA was positive many times, and my WB on occation had lyme specific bands but was generally neg.
Many co-infections were identified with Quest.
Our insurance pays 100% for quest so repeated testing to track healing was done.
Did our llmd doubt for a mintue we had lyme. No.
Lyme should be a clinical diagnosis because the nature of anti-body testing is not very accurate no matter the lab.
And then there are different strains of bacteria that makes testing even more complicated. Co-infection testing needs to be done because symptoms are similar.
posted
Tony, you really can't blame the lab if the test is ineffective. If it was the fault of the lab, then my other blood tests would be faulty not just the Lyme test. The test itself is the main problem.
My other blood tests are what led to treatment...elevated liver enzymes, CPK, anti JO-1, aldolase, thyroid, etc. By monitoring these levels, they have been able to determine both the cause of my symptoms (infectous) and how well treatment is going (great!). If the lab was unreliable for these tests, the results would be all over the board.
I'm hesitant about the Igenex testing because it seems that everyone gets a positive test with them. Having a positive test was not my goal. I wanted someone to treat me based on clinical symptoms not test results. The fact that I'm getting better through the treatment is enough of a positive test for me!
Not trying to argue...just don't want people to think that the lab is completely unreliable for testing when many of us are being tested for many other things besides Lyme. Hopefully one day they will find an accurate way to test for Lyme...meanwhile, clinical diagnosis is really key.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
had tubes drawn the same day,1 went to quest.The other to stoneybrook university.Quest negative,,,,,Stoneybrook POSITIVE.Then 1 to Igenex,which showed almost exactly the same bands as SUNY. I think Quest should be shut down,they miss to many cases that then become chronic.Or misdiagnosed.Just my 2 cents.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Quest labs are all over the country and they very quite a bit.The ones that tested me failed to find lyme at least 10 to 15 times from 1988 to 2001 until I found a LLMD and he started me on abx's then ran 3 day urine and then ran western blot Possitives both tests thats right at Igenex.
Some have done a good job while others have not. Go to a proven lab and a proven LLMD and remember lyme is a clinaical dignoses should not rely on lab reports only {{ever}} especial;ly with TBI.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Marcie!
1. Are you symptomatic?
2. Were you tested for co-infections, such as Babesiosis?
3. How soon after tick bite were you tested?
4. Did you have a rash?
Thanks, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Quest does not test for all the bands! big problem!
My test from Igenex was NOT CDC positive.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Sorry KP,
I don't want to argue either...however I got same results same way 8man12 did...
And no I have not ALWAYS gotten positive tests from Igenex or Stoneybrook...
But I ALWAYS got negative tests from QUEST...
You do the math.........
Not blaming the lab is like not blaming Ford motor company for building the Pinto that used to blow up when struck from behind...
I KNOW for a fact that Quest does'nt have the capabilities to do an accurate lyme test.
If you get a positive from them...they got lucky.
Labcorp used to use Igenex for lyme tests when I worked there...but now they do their own and they stink at it also......
Yes I am VERY aware that a clinical diagnosis is necessary as on each and every lab result somewhere is printed these exact instructions...
Or at least somewhat like "these test results are for investigational or research purposes only and a clinical diagnosis is necessary"
However this test gives the ducks the supposed way out of treating when negative which makes HMO's and other insurance companies happier than pigs in shirt!
Plus it saves the ducks from worrying about losing their 300,000.00 dollar house and perfect stepford wife with fake boobies.
Yes, these ducks with no intestinal fortitude(cajons) **** me off........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Why waste your time. I would go straight to IgeneX. I was tested by Quest 14 years ago and tested negative. Last year I tested positive at IgeneX. I was tick bitten prior to the Quest test! So I spent 14 years thinking I didn't have Lyme with the result that I now have chronic, late stage lyme. This could probably have been avoided had I received proper testing 14 years ago!
Sadie
Posts: 115 | From new york | Registered: May 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I understand that Quest is an excellent lab, except for TBDs. I recently ran my own experiment. I would not have done this if I hadn't already planned to go to LLMD.
I originally went to Quest: I came up IGM pos for Babesiosis, IGG neg (Dr's fault, tested too late, s/b w/in 2 wks). Lyme titer w/reflex to WM- reflexed however only 23 KDa reactive (so tech. neg).
I had a "classic bulls-eye", as PCP said, and could not have been more obviously symptomatic.
On retest from PCP went to Labcorp: Titer neg, so no reflex.
I do not know if LLMD even bothered to send for another test somewhere else. I'll know what's what Oct 5th at follow up. He definitely did more tests for Babesiosis, which ID said I no longer had, I still have it. He also Dxd me clinically and told me that I absolutely, without question, still have Lyme.
If I find out that there was a positive test from another lab, I will post. I am happy though to have a Dr., who knows and understands and treats these diseases, give me an absolute diagnosis. His word is good enough for me.
I would, however like to have documented laboratory proof to bring back to my PCP, who admitted that TBD knowledge in the industry is lacking. I feel that might help her to help others.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by KP: [Q] I'm hesitant about the Igenex testing because it seems that everyone gets a positive test with them. [/Q]
Karen,
I'm curious about this statement. Have you heard of many people having false positives with Igenex? That would concern me too. I thought the people getting positive tests from them actually did have Lyme.
Also curious, did you false negatives from Igenex, MDL or Bowen? I absolutely do agree that clinical diagnosis is more important than and should take precidence over lab results.
Sometimes it's nice to have on paper though, if you can get it.
Ali
PS - Tutu, Tony & Sadie, I also agree that Labcorp & Quest both stink, but for me Labcorp smelled a little bit worse! I only wasted my time because insurance paid for it. If the morons paid for one test from a specialized lab, they wouldn't have had to pay for two from the general labs.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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So I spent 14 years thinking I didn't have Lyme with the result that I now have chronic, late stage lyme. This could probably have been avoided had I received proper testing 14 years ago!
THAT's my beef with them!!!! So many THOUSANDS of people are suffering today, not knowing what is wrong with them because of lousy tests!!!
Alig....The only people saying Igenex has false positives are the DUCKS!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Lymetoo:
Alig....The only people saying Igenex has false positives are the DUCKS!!!
Thanks, TuTu, that's what I had thought. Maybe it's because all the people who go there are those who know they have it but get negatives from the other labs?
[ 28. September 2006, 04:50 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Man this question gets asked a lot. Which lab is best. The answer is YOUR LLMD is. Quest it would seem is unreliable and many say Igenex has way too many positives. This is a tough disease and best treated by those that have seen much of it.
Posts: 408 | From NY | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
reasons why you can still have lyme & test negative-no matter how good the lab:
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
For what it is worth, I had my blood sent to Quest, Bowen, Stony Brook, Igenex, and one other lab that I can't even remember, all with the same blood draw (14 tubes!)
Actually, all of the labs returned nearly identical results (Elisa and Western Blot) for CDC bands. That result was negative for IgG, postive for IgM, so as far as the CDC is concerned, negative for active infection.
The difference in labs that I saw was that unlike the other labs, Quest does not test all bands, so IMO its results are unreliable by definition, since key lyme-specific bands are excluded. And that's before you even get Igenex's superior PCR tests, tests for co-infections, etc.
Thank goodness indeed for LLMD's who know how to listen and to get beyond those limited lousy lyme labs.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by AliG: Hi Marcie!
1. Are you symptomatic?
2. Were you tested for co-infections, such as Babesiosis?
3. How soon after tick bite were you tested?
4. Did you have a rash?
Thanks, Ali
Does anyone know if Marcie has even seen the replies to her post?
Basically the negative test with Quest does not mean you do not have Lyme .
A good LLMD can make a diagnosis without relying on the test, they will also know whether or not you may have co-infections. Dana posted a good link. There are many reasons why you can test negative at Quest or anywhere else!
Ali
PS- Karen, I'm sorry you had to go through that. 8 negative tests! That must have been awful for you to say the least. I'm really glad you've found a good LLMD & you're getting help now!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Hi Ali, I did see the posts. It seems like the majority thinks that Quest is not that reliable.
I was tested just a few weeks ago. My symptoms started in June so it had been a few months already.
I did have a rash back when the symptoms first started and I am still not feeling well.
I asked the doctor if this test would show co-infections and she said no. This doctor that tested me I would say she was not real familar with Tick diseases. She was the only one I could get into see all the other doctors that were recommended are booked. I have some apts. the end of Oct. There is not enough LLMD around here. Hopefully they will test me with Ignex. Marcie
Posts: 323 | From Michigan | Registered: Sep 2006
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quote:Originally posted by sometimesdilly: The difference in labs that I saw was that unlike the other labs, Quest does not test all bands, so IMO its results are unreliable by definition, since key lyme-specific bands are excluded.
Exactly.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Can you even feel comfortable that this is your test result? After reading this Im sick. She did go for a 2nd opinion, they used the same slide.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Just to clear up a couple of points...
The testing labs, by law, must follow the manufacturer's directions for the blood tests they use. Quest uses a test that combines your blood sample with one strain of Borrelia burgdorferi. The test tells them to look for only certain bands from the Bb sample. They are required to follow the recipe on the back of the box, so to speak.
A few bands had been eliminated from the readout years ago, because they were developing a vaccine that would make everyone who got the vaccine positive on those bands. Unfortunately, those bands are very specific for Bb, and the vaccine has been pulled off the market.
There are hundreds of strains worldwide. (It has been shown that Bb shares genetic material when it reproduces -- it "mates.") Igenex is one lab that tests your blood with two strains of Bb. Probably more expensive, but you also get more positives statistically.
There is another reason that Igenex gets more positives, I would guess, and that is that most of the blood they are getting is from doctors who are already highly suspicious that their patients have Lyme. In other words, they are already diagnosed with probable Lyme, so wouldn't they show up positive more often?
Hope that helps, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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