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Is this really an Indeterminate result, or is it actually positive

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Lyme Disease
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Posted 6/23/2017 12:25 PM (GMT -5)
Finally got a hold of the IGeneX report for my daughter. If she has lyme, she contracted it in Europe. We lived there 2010-2013. Her symptoms began ~2011. We were living on the edge of a forest that is known to have Lyme and spent a lot of time there. (She did have a tick bite when she was little, maybe 3 years old, while in the US in an area not known for a high incidence of lyme)

Her results were
IgM 41 ++
IgG 31+++, 41++, 58++

Per CDC criteria, this is negative. Per IGeneX, it's indeterminate. Follow up test on 31 was ordered.

However -- I believe she's positive by European standards, not to mention we don't have results for 17, 19, 43, or 83/100 which are also indicative for European strains.

What do you think? Is there another test we should get?
Posted 6/23/2017 12:53 PM (GMT -5)
dijid - It could be from the bite she had when she was 3 and she's just getting symptoms now...or it could be from when you lived in Europe.

Either way - she needs treatment.

Band 31 is RARELY caused by a cross-reaction with a virus - EBV being one of them.

Dr. H. includes band 31 in his list when determining if someone has lyme disease.

My husband had band 31 and 41 and did the epitope test...it was positive.

So far, I've only seen/heard one epitope test NOT come back positive for lyme.
Igenex does have 83/93 but not 17, 19, 43 or 100

I don't think you need any other testing done- unless you're wanting to pay for co-infections...but as far as lyme goes - that's enough.
Posted 6/23/2017 1:02 PM (GMT -5)
To add to what Girlie just said, here are some articles stating that Band 31 is Lyme specific:
​ ​​Band 31:
​ ​https://www.ncbi.nlm.nih.gov/pubmed/8223404


​ ​
www.ncbi.nlm.nih.gov/pubmed/1520966


www.ncbi.nlm.nih.gov/pubmed/9440203


www.ncbi.nlm.nih.gov/pubmed/8406878


www.ncbi.nlm.nih.gov/pubmed/8005219


​​www.ncbi.nlm.nih.gov/pubmed/10030131


And more references can be found here:
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt
Posted 6/23/2017 1:16 PM (GMT -5)
Thanks for confirming what I suspected. I did a TON of reading and research this morning before coming to my conclusion that she's positive for lyme. The 31+++ could explain why she seems to be herxing with everything we try. (I know, I know, we've begun supporting the detox better this week.)

I've also been searching and the doc we're seeing seems to be one of three I've found in the local area who treat lyme. (We lucked into going to her in the first place.) However, there is an infectious disease specialist about an hour away who specializes in lyme. I'm wondering if consulting with him would be a good idea?
Posted 6/23/2017 1:23 PM (GMT -5)

dijid said...
Thanks for confirming what I suspected. I did a TON of reading and research this morning before coming to my conclusion that she's positive for lyme. The 31+++ could explain why she seems to be herxing with everything we try. (I know, I know, we've begun supporting the detox better this week.)

I've also been searching and the doc we're seeing seems to be one of three I've found in the local area who treat lyme. (We lucked into going to her in the first place.) However, there is an infectious disease specialist about an hour away who specializes in lyme. I'm wondering if consulting with him would be a good idea?


No - and ID Dr. won't be much good - unless he's a Lyme Literate one (like Dr. Jemsek) - but a 'regular' ID Dr. will most likely just frustrate you. (I wonder what 'specializes' in lyme actually means?)


The one you have chosen - do you know if she is lyme literate? Did you get a recommendation from someone?
Posted 6/23/2017 1:31 PM (GMT -5)
You could call the ID doc and ask before taking your daughter in. We have a great list of questions you could pose to the doc too - in the "new to Lyme" thread, I believe on page 2.

If they give any indication that they don't follow ILADS guidelines though, I would hightail it out of there and stick to the doc's that follow ILADS guidelines.
Posted 6/23/2017 1:44 PM (GMT -5)
I chose the current doc because she's an actual MD who is into functional medicine. I got tired of other docs adding an alphabet soup of dx's and/or telling us stuff was in my daughter's head. She was one of two I had reco's for - just the one I was able to get an appointment at sooner. She's the one who suggested the IGeneX lyme test. She's given us Buhner's protocol and told me to buy the book. (I did.) She comes up in a search for lyme doctors in the area, but I don't know if she's a true LLMD.

The ID doc was mentioned on lymeforums. That's how I found him.
Posted 6/23/2017 1:52 PM (GMT -5)

dijid said...
I chose the current doc because she's an actual MD who is into functional medicine. I got tired of other docs adding an alphabet soup of dx's and/or telling us stuff was in my daughter's head. She was one of two I had reco's for - just the one I was able to get an appointment at sooner. She's the one who suggested the IGeneX lyme test. She's given us Buhner's protocol and told me to buy the book. (I did.) She comes up in a search for lyme doctors in the area, but I don't know if she's a true LLMD.

The ID doc was mentioned on lymeforums. That's how I found him.

Sounds like she is knowledgeable (Igenex, Buhner)

I don't know if I'd also be going to the ID Dr....since you have a Dr. already who seems to be knowledgeable.
(especially if you have to pay for the ID Dr. appt)
Posted 6/23/2017 1:54 PM (GMT -5)
I have to pay for the current doc. She agreed to see my daughter under her functional medicine (ie cash only) practice as she's not 18. No insurance involvement whatsoever. We are fortunate in that we can afford it. Not fly-to-Germany-for-stem-cells level of "afford it" though!
Posted 6/23/2017 6:53 PM (GMT -5)

1000Daisies said...
It's a clinical diagnosis, and labs are just one piece of the puzzle.

I did get frustrated with the inconclusiveness of the IGenex, so I eventually tested with Advanced Labs because I needed the confirmation in order to feel from comfortable/confident with our treatments. I eventually tested all my kids via Advanced Labs, and they were all positive. They actually look for the spirochete and take a picture of such (and include in their lab report). To me, it doesn't get much more positive than that.

We also have really low CD-57s (again, just another piece of the puzzle).

However, for me...Igenex was good - I was positive.

Does Advanced Labs look for spirochetes under a microscope?
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