2nd Hand Lyme Lab warnings

[motox320]

I may have Lyme, but I am not CDC positve.

I do agree that the CDC test is right if you have a positive result, but may not be always right if negative.

I was negative on the CDC.

My LD, send a blood sample from me to an un-named Lyme lab. It came back postive based on there results.

I questioned this.

Here is the rest of the story.

Another person took 5 samples of there own blood at one setting, and sent them out to this place from different locations.

The tests came back different.  There is something wrong as this was all from one person, same blood draw time.

I do now not trust 2nd hand Lyme labs.

Some of them may be good. I am a Lyme supporter, dont get me wrong.

But if these labs are so good, the CDC could easily do a inexpensive study of these tests and vilidate them.

As the CDC there test also says they should not be used as diagnostic purposes.

There is a reason you have to pay cash 1st and most insurance compaines will not pay for these tests.

Also, why insurance wont pay for chronic Lyme, beacuse it cant be proved.

In end, the CDC needs a better test, and I think many of these 2nd hand Lyme labs are not accuate at all.

[22dreams]

If you want to talk about testing. My sister tested CDC positive in 2006.
Her doctor stopped treating in my state and she went without Treatment for awhile and she worsened without treatment.

Fast forward to 2009, she was tested again, this time only positive on band 41.
Regardless, she was so debilitated---bedridden actually --
that the Md put her on IV antibiotics. As a herx reaction, several so-called classic bull's eye rashes appeared on her legs-- for the first time as she had never presented with the bull's eye rash previously (or hadn't seen one).

Any doctor with 1/2 a brain would say if you have the rash, you have lyme. But the blood test told a different story. So: do you then believe the test? not logical.

Looking to tests with lyme, debating testing is pointless.

the point of this thread really seems to be discrediting one particular lab.
You will find that variables exist with any lab, including WHO is conducting the tests, as not all lab technicians, no matter the lab are created equal.

the fact is: lyme tests, no matter which ones, cannot be used to say "no you don't have lyme". They are too inaccurate no matter who is conducting the tests. Not enough is KNOWN about lyme to rely on mere Antibody tests. Tests, as in the case of my sister, show nothing much. She turned a corner with that IV treatment, thank God.
and thank God she found a doctor who didn't follow Surveillance criteria (CDC criteria intended for demographic purposes and not treatment protcol) but rather personal clinical judgment.

so: my warning goes out about all testing. No matter the lab.
A negative test no matter which lab does not mean that you don't have lyme. It's a horrible thing that more research hasn't been done over the last several decades to improve the quality of diagnosis and treatment.

We can debate current testing until the cows come home. It won't change the fact that there are people who have lyme who will never test positive until the medical community does more to get out of the lyme dark ages.

[motox320]

"
Also a note about your friend who sent 5 samples and had them come back all different.  I've had 3 tests done with Labcorp and all 3 came back different.  It's the nature of the testing combined with the course of the disease.   "

The friend send all from the same blood draw.

Of course your were different, they were differnt blood draws.

[wonko]

I think that the real issue, as noted by some above, is that none of the testing is sufficient.  That is why Lyme needs to be a clinical diagnosis made after other conditions are ruled out.  For me, finding a doctor I trust meant more than any single test result.

[kamrynkade]

Also, maybe all of our doubts will be quelled soon.  Hopefully there is a new more accurate test coming soon:

http://www.sciencedaily.com/releases/2010/06/100618141631.htm

[kamrynkade]

You've gotten a lot of good advice from Jackie.
Just a couple of comments...the CDC does not care about diagnosis they care about REPORTING.  They set these guidelines as a way to filter the reports they get from labs.  

When Lyme was first being studied by Allen Steere (I know...groan), he said that if a patient tests positive on band 41 and exhibits symptoms they should be treated as having lyme.  This has of course changed.  He realized that a lot of healthy people test positive on 41 and that this would confuse doctors.  

Don't assume your doctor is smarter than you just because they have MD behind their name.  They read their little journals and get their memos from whatever "society" they belong to and that is the extent to which they keep up to date on things.  It's very rare to find a doctor that is truly on the forefront of any disease.  

Anyways, that's a bit off topic.  If you don't trust Igenex, you can try Clongen.  He uses a kit from the CDC so that should alleviate any concerns you might have.  You can also talk to him on the phone and he will address any concerns you have.  He has a PhD from Berkeley and has been dealing with tick borne diseases for a long time.  He is a scientist, not an MD which is more reassuring because he actually does research.  The results will show whether you are CDC positive or not.  But, more importantly I like Clongen results better than Igenex because they give you an actual number beside each band.  The (ind.), +, ++, and +++ from Igenex drives me bonkers.  

Also a note about your friend who sent 5 samples and had them come back all different.  I've had 3 tests done with Labcorp and all 3 came back different.  It's the nature of the testing combined with the course of the disease.  

[motox320]

I am 26, was a standout college athlete, mma fighter ect. 170 lbs all mucsel, could run like the wind, was stronger than a 300lb man.

In 2006 I got real sick with swollen lymth nodes in my groin.  Then summer of 07 left sided facial numbness constant, then a breathing problem, then summer 2009, developed chronic all day long everyday migraine, all with no answers. Many many MRI's, and blood tests. ALL normal.

Then Igenex says I have Lyme because of band 31 and 41 being +.  The doctors at the local unviversity say no, you must have 5 bands.

So what the heck? Then I read about Igenex, and found all this documintation about bad tests. Then I personal know someone who sent 5 samples that all came back different.

So can I trust this lab? no...

I am going to send them 3 more samples of my own blood with differnt names on them and see how it comes back. If they come back different at all, this is obvious a major problem.

Problem number 2. The CDC is a good group, they want to HELP people. They state that these Lyme labs are just money making bogus.

I believe the Lyme labs want to help, but I dont think they have the best tests. Why dosent Igenex post there validation studies, so we all can see them?