Tuesday, May 28, 2013

Understanding Igenex Lyme test results


Since my last post I have been able to have a good look at my Igenex test results for Lyme Disease. A friend who also recently had a Lyme diagnosis was able to graciously explain it all to me in a way that my foggy brain could understand. Here is how she basically explained it to me.

The test is about probability rather than certainty. It looks at a number of ‘bands’ and how strong a response you have in each band. The LDAA (Lyme Disease Association of Australia) have this to say about the bands:

Currently there are 9 identified bands specific to Lyme Disease – 18, 23-25, 31, 34, 37, 39, 83 and 93.  
 A “+” or “IND” to one of these bands is considered a positive result.  A “+” or “IND” to two or more of these bands is considered a strong positive result.
Other bands on the Western Blot report such as 22, 28, 30, 41, 45, 58, 66, & 73, all add significant weight to the result, but at this stage are not necessarily considered  as absolute specific for Lyme bacteria. 
NOTE : It must be stressed that a Lyme Disease diagnosis is not based on a blood test result, but is rather based on medical history and current presenting symptoms – blood tests can assist in diagnosis, but should not be used to base a diagnosis on.  Also, almost all Lyme Disease patients have co-infections such as Ehrlichia, Rickettsia, Babesia, Bartonella, Mycoplasma Fermentans, Chlamydia Pneumonia, etc – these have their own testing and diagnostic problems, but should be considered in the diagnosis and treatment of a patient with Lyme Disease.
 For more information regarding the bands
 31 (also written as 31kDa) – is the outer surface protein A (ospA) – this is a classic Lyme Disease band, used in the Lyme Disease vaccine
 34 (also written as 34kDa) – this is the outer surface protein B (ospB) – this is also a hallmark Lyme Disease antibody, but is excluded from CDC criteria.
 23-25 (also written as 23-25 kDa) – these are the outer surface protein C.  Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections.

Here are the bands that are tested
  • 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


My results for the IgM were IND or +ve (based on the info above it basically means all +ve) for 31, 39 and 41. And for IgG 30, 34, 41 and 66.  

which means the following apply:

31, 34, 39, 41 are all lyme specific, and it says a +ve or IND on ONE of these is considered a +ve result. 

The LDAA also say  ''If you have not received the Lyme Disease Vaccine and you test positive (“+”) or indeterminate (“IND”) to bands 31 and 34, you probably have Lyme Disease.'

and also “Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections”.


So although officially my Lyme test was said to be negative it’s pretty likely that I do have Lyme. If I were to be re-tested after I start treatment then it’s more likely that I would be returned a positive result because as the Lyme dies it’s released into the blood stream where it can be found by the test.

I have more reading to do but I am leaning quite heavily towards my Doctors recommendation of going on IV antibiotics. 

* Photo is of a Lyme Spirochete, taken from the movie 'Under Our Skin'.

10 comments:

  1. Funny, you're at the same stage of the game I am at. I have had cfs for about 6 years and am now exploring lyme- fun!!!! Would love to hear what you end up doing.

    Sipora

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  2. I hope you feel a bit relieved now that you have made a decision. I really hope it all goes well Lee Lee. Sending plenty of healing. xx

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  3. Lee, did your friend or the LLDA supply any research references for this part?

    "C. Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections."

    It's a pretty big claim to make. I've been a member of Lyme online groups for years. Every now and then I take another look to see how treatment and detection has moved on. Have not seen anything to substantiate this claim so interested to see what I have missed.


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  4. Can you try oral antibiotics first? I did a year of heavy dosage oral antibiotics and it made a big difference. (Insurance would pay for oral antibiotics but not iV.)

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  5. Lee lee just to say I think of you ...and really hope you get relief.can you tell me whether PENE is the primary diagnostic symptom for lyme?

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    1. HI Di :) PENE is not part of the diagnostic criteria for Lyme, but it is certainly a symptom.

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  6. I cannot make my brain work right now to read this but I wanted to say a huge thank you. I am going to relook at my test to better understand.

    Big love x

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  7. I never know whether to say congratulations or sorry when someone diagnosed with ME/CFS finds out they have Lyme...but I think it is good news overall because it means you have some answers and treatments available.

    I hear about this happening all the time - and more and more frequently in Australia lately. My own son has Lyme, babesia, and bartonella that we missed for 5 years, so I understand what you are going through.

    You probably already know this, but the treatment is likely to make you worse for a while (herx reaction). My son had a severe 18-month long herx but is improving now. It helps tremendously to improve the methylation process first (or concurrently).

    We've been going through this for years now (I also had Lyme for 3 years but got it after CFS), so please feel free to ask if you have any questions.

    Did you test positive to any of the co-infections? That's important, too, because you can't get rid of Lyme without also treating co-infections.

    Good luck!!! Hopefully, this is the beginning of better days ahead for you!

    Sue

    Live with CFS

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  8. best wishes...!
    has ANYONE ever gotten a negative result from ignenex?

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  9. sincerely, best wishes! it is hazardous terrain to navigate

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