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

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doublerpub
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/23/2009 3:51 PM (GMT -7)   
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
 

1bitten2xshy
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Date Joined Jun 2007
Total Posts : 849
   Posted 8/23/2009 5:18 PM (GMT -7)   
Yes go further. If you want more proof ask for a blood test done thru Igenex.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 8/23/2009 6:07 PM (GMT -7)   
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.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/23/2009 6:15 PM (GMT -7)   
doublerpub,

Welcome to the forum!

If you want to go further and find a Lyme Literate Medical Doctor, let me know. I can give you some information to help you.

You can also order the Igenex test yourself. You just need someone to draw your blood and a doctor to read the results. The test has to be paid out of pocket and it costs between $200.00-$250.00. You can claim it on your insurance after.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


rdatman
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Date Joined Aug 2009
Total Posts : 10
   Posted 8/23/2009 6:46 PM (GMT -7)   
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.;-)

doublerpub
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/23/2009 8:49 PM (GMT -7)   
thank you for your quick replies.

In response to NervousTick, this was the one and only test for Lymes that was done so far, so I'm not sure if I should ask them to do an Elisa/Eia test first (I guess I thought the IgG and IgM were the Elisa tests?) ....in not...I'm not sure why they didn't do that first.

I'm going to talk to my GP tomorrow to understand these results and how/why they concluded a negative result.

I looked at the Igenex web site, but it is confusing. what test or tests would one seek to have them run to find a more definitive result?

doublerpub
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/23/2009 8:50 PM (GMT -7)   
to cajungirl, yes....how would I find a local LLMD?

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/23/2009 9:12 PM (GMT -7)   
doublerpub,

Here is a breakdown on each band and what the numbers mean.

Ticker's words of wisdom about how to read your Western Blot results:

The IgM tests for a more recent infection and the IgG a longer standing one. Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Band 41 is often the first to show. Bands 30, 31, 34, and 39 are all Lyme specific bands.
Lyme Disease since fall 2001; on antibiotics since spring of 2005 (since diagnosis), treating lyme, babesiosis, ehrlichiosis
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/23/2009 9:19 PM (GMT -7)   
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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 8/23/2009 9:23 PM (GMT -7)   
I don't think Igenex tests for Ehrlichiosis. You can call them and ask them though. They can also help you decide which tests to choose.

I know this is all overwhelming but reading and doing research will help you understand everything.

You can email one of our long time members, Ticker at:
ko_@bellsouth.net to find an LLMD in your area. If you'd like more suggestions, you can email: stephanie@turnthecorner.orgYou can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.

ILADS is also a great site to find information:
http://www.ilads.org/


For even more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


alliebridge
Regular Member


Date Joined Mar 2006
Total Posts : 67
   Posted 8/24/2009 10:17 AM (GMT -7)   
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.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 8/24/2009 10:17 AM (GMT -7)   
It sounds like they may have run an ELISA and a Western Blot.  I think the 4.86 might be from the ELISA, then if that's pos., and it was, then they run the Western Blot.  They consider it positive if both the ELISA and the WB are positive. Good Luck, KO

2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 8/24/2009 12:23 PM (GMT -7)   
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
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 8/25/2009 4:36 AM (GMT -7)   
Cajungirl,
Igenex does test for Ehrlichiosis! I had my positive test done by them. They test for all coinfections.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/25/2009 4:53 AM (GMT -7)   
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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


doublerpub
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/25/2009 6:37 AM (GMT -7)   
Thanks again for all replies...
 
saw my gp yesterday....
 
the first number the 4.86 was the Elisa.  It is being viewed as a false positive because the Western Blot only had two of the IgG bands as positive and none of the IgM bands as positive.  So they feel strongly, the lab work (which was done by LabCorp), confirms no Lyme Disease.

I asked by GP about about IngeneX and they said the test costs about $800 and it is not the standard care of practice for Lyme testing.  He did not say he wouldn't draw the blood if I bought the kit; he would.
 
My plan is to complete the process to rule out other stuff and if nothing turns up and I'm still feeling this way, see a Lyme Disease specialist.
 
Will keep the board posted, thanks

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 8/25/2009 8:41 AM (GMT -7)   
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.

strongmom
Regular Member


Date Joined Aug 2009
Total Posts : 79
   Posted 8/25/2009 1:33 PM (GMT -7)   
I was just diagnosed with Lyme, I had to ditch my doc when showing up in her office after having all the symptoms AND a huge bullseye rash was met with a shrug AFTER she sent for a blood test and only the IGM 41 cam back positive.

It was LabCorp too.

So I called around and found a local doc who could see me right away. By then the rash was gone but I did take pics of it. Based on pics of my huge bullseye rash, the IGM41 coming back positive (which I've read is the first thing that usually shows up in Lyme), and my symptoms, she diagnosed me with Lyme and gave me antibiotics right away.

She said that Lyme tests often come back with FALSE NEGATIVES and she wouldn't base her diagnosis on that alone because by the time all the bands come back positive based on the CDC tests, the disease is often already progressed.

Thank God I found her, I'm not sure how progressed the illness is at this point, but feeling pretty miserable here.

If you feel your doc isn't addressing your illness properly, maybe you need to look around.

I'm guessing the reason why the CDC doesn't go by Igenex standards is probably because the public would panic if they knew how many people actually have Lyme.

I was so frustrated when the first doc came back saying the test was negative, then I asked for a copy of the test and saw the IGM41 present. I told my husband it's like finding a dinosaur skull and spine with ribs, but since the legs and arms are missing, it's not a dinosaur.

doublerpub
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/25/2009 1:43 PM (GMT -7)   
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.
 
 

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 8/26/2009 9:17 AM (GMT -7)   
doublerpub, another test you could ask for would be a CD57 it's not diagnostic, but if it is below 100 (that's what my doctor says, labCorp is under 60 to consider it abnormal) it would be another indication of Lyme.
KO
P.S. You can read more under Newbie I believe
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 8/26/2009 5:25 PM (GMT -7)   
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.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 8/26/2009 7:54 PM (GMT -7)   
I agree do a labcorp Cd 57 and be sure to ask for a FISH test for Babesia as your main symptom is chest pain. Good luck

KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 8/26/2009 8:25 PM (GMT -7)   
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.?

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 8/27/2009 7:35 AM (GMT -7)   
Keephope,
If I remember right you need 2 of those bands to be positive in order for you WB IgM to be considered CDC positive.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


Kiss My Lyme
Regular Member


Date Joined Aug 2009
Total Posts : 23
   Posted 8/27/2009 11:28 AM (GMT -7)   
I had 5 negative lyme tests. The 6th was a clinical diagnosis that was 10 years agooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo
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