MD called and said results were negative, but just got my copy and WOW

Perhaps some of you who have dealt with this in the past have insight on test results.

Background:  Many months of chest pain, chronic fatigue...been ruling out cardiac, gallbladder, acid reflux...someone suggested checking for lyme and asked my GP to run the test.  They called Tuesday and said came back negative...just got my copy from Labcorp

Lyme Ab/Wester Blot Reflex

   Lyme IgG/IgM Ab          says   4.86  HIGH   and positive is anything > 1.09

   Lyme AB Interp., EIA     says   POSITIVE ABNORMAL

In the Lyme AB IgG by WB section

  only two of the criteria P23 and P30 say present abnormal, all the others say absent

  and Lyme IgG WB INterp   then says NEGATIVE at the bottom.

The Lyme AB IgM by WB is also interp as Negative (P41, P39 and P23 are absent

Lyme Disease Ab, Quant, IgM is scored as <.91 Negative

       IS THIS WHY THE CONCLUSION for overall Lyme disease is negative IS NEGATIVE?  

       Seems odd to me to have that first number as 4.86 when anything over 1.09 is positive.

Anyone ever seen something like this before?  SHould I continue to pursue

 

The assumption here is that you had a false positive screening test (ELISA/EIA) because they followed that with a WB that was "negative". It seems though that your WB, though "negative" by CDC standards, does demonstrate Lyme specific bands present.

I would second once bitten's advice and definitely follow this up. You might not get anywhere with your current MD (be prepared). Good luck.

Go with Igenex. If your doctor has a problem with this request fire him/her summarily. (but get them to do a blood draw first.;-)

to cajungirl, yes....how would I find a local LLMD?

Here is a whole bunch of info on Igenex. It also tells you what co-infection tests to order.

IMPORTANT INFORMATION REGARDING IGENEX TESTING
 
Igenex Labs in Palo Alto CA is a highly sensitive reference lab that is highly recommended by the Lyme Community for testing if you suspect Lyme Disease.
 
When Lyme Disease is suspected, it is important to seek the care of a Lyme Literate Medical Doctor (LLMD).  Many of these doctors will have these tests kits on hand.  Mainstream and Doctors will usually not.
 
Any person can call Igenex directly and order a test kit.  Their number is 800-832-3200.  You will recieve the kits in 3-4 business days.  A Dr (even if it is your Primary Care Dr) can sign off on having the test done.  In this case, all results will be sent to the ordering physician.
 
Currently, Igenex does NOT file any insurance, they do accept Medicaid and do the filing, and all major forms of credit cards as well as personal checks.  Testing can be quite expensive, anywhere from $200 to $1200 but the price is well worth it in my opinion.
 
If you choose to order the test kit yourself, I believe it will speed things up as you will have results in hand at your first LLMD visit and can in some cases speed up an initial appointment (depending on the LLMD)
 
When you receive your test kit and have your physician sign off on the order, there are MANY confusing options as to which tests to order.  Igenex can assist you at the number above or we on the forum can guide you based on our past experiences.  Igenex also has a great website which explains there procedures and tests in detail at www.Igenex.com. It is very important to test not only for Lyme, but for coinfections such as Ehrlichiosis (2 types), Babesiosis, Bartonella, and Mycoplasma.  There is also an option to test for Rickettsia Diseases such as Rocky Mountain Spotted Fever.  Studies show that up to 60% of persons infected with Lyme are also infected with at least one of the above mentioned coinfections.
 
Once you have decided which tests to order, you must have your blood drawn by a lab (two lab tubes are included in the kit you receive).  You must have the blood drawn Monday, Tuesday, or Wednesday I believe as the return packaging that is included is Fed Ex and Igenex cannot receive labs on the weekend.
I HIGHLY recommend doing it on a Monday so Igenex has it early in the week and you have it done and out of the way for the week. 
 
Once you have your blood drawn, be sure to follow ALL enclosed instructions, pack as instructed, be sure to complete the test requisition form in it's entirety, use the return packaging exactly as instructed and either take the sample directly to a Fed Ex location (NOT A DROP BOX) or call the 800 number on the return packaging for pickup.
 
Test results take 7-10 business days.  Igenex will speak with you on the phone and if you find an LLMD or wish to have results sent to another Dr, you can call them and they will have you complete and fax a form back authorizing them to send your results to another Dr.  The  Igenex staff are very nice.  They just will not fax, mail or give any results to you.  They will however tell you if the test is complete and whether is has been faxed to your Dr.  Then you can call you Dr for copies. 
 
Feel free to post results on the board and the members here will be happy to help you interpret.
Remember, when a test result says negative, it does NOT mean that treatment is not warranted.  This is up to your LLMD.  Your test will have many different bands reporting with a -, IND, or + (up to 4) afterwards.  These are protein bands and there are some that are specific to Lyme Disease.  Additional interpretation and explanation can be provided by Igenex's staff Physician, Dr. Nick Harris.
 
REMEMBER, LYME DISEASE IS A CLINICAL DIAGNOSIS.  SYMPTOMS ARE A HUGE FACTOR IN DETERMINING TREATMENT.  Many people have been successfully treated for Lyme based on a clinical diagnosis successfully.  Also remember that no test is 100% accurate.  A positive test is supportive of a clinical diagnosis of Lyme, but a patient with many Lyme symptoms that has ruled out many of the other diseases it mimics should serious consider testing.

Lyme and coinfection testing (yes, even Igenex) is faulty. So at this point (until such time that there is accurate testing) diagnoses have to be based on clinical symptoms alone.

The sensitivity of the two-tier Lyme testing is 46%. The cutoff, in order to be considered an "accurate" test is 95%. Therefore Lyme tests should not be considered an accurate diagnostic tool.

People should *never* feel relieved with a negative test result.

What lab did you use?
If you did not use the highly sensitive test from IGENEX then your test will always come back negative. Becuase of the primitive test done and set by the CDC....

twingirl

Are you sure? I don't think they test for all co-infections. My LLMD had to send some off to MDL. I don't remember which ones though.

She now has their number to call and find out for sure.

cajungirl this is right from the order form:

EHRLICHIA CHAFEENSIS (HME)

203 HME IgG & IgM Ab

750 HME PCR – Serum

770 HME PCR – Whole Blood

I have my results from Igenex right in front of me. They do test for all coinfections.

thank you for your reply.  I hope you start feeling better soon.  I don't ever recall a bullseye rash per se, though I live in a deer filled area and am always outdoors.

I am going to take it step by step and probably seek out a LLMD.

 

Martha's Vinyard said: "If you did not use the highly sensitive test from IGENEX then your test will always come back negative. Because of the primitive test done and set by the CDC...."


I respectfully disagree with you. I have tested positive 4 times over the past 19 years; twice in New England, and twice in the mid-west. They were regular labs such as LabCorp and Quest. I have had one negative test and that was by Yale University in 1990. The different docs (not LLMD's) that ordered the tests agreed that I had Lyme. It IS possible to get positive tests, it is just more rare than it should be.

Somebody said...
The Lyme AB IgM by WB is also interp as Negative (P41, P39 and P23 are absent

What does this mean? Anyone know.
Those are the three bands That keep coming up for me.?

I had 5 negative lyme tests. The 6th was a clinical diagnosis that was 10 years agooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo