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Igenex Results...Confused

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Posted 7/31/2014 4:25 PM (GMT 0)
Hi.. I've just found this forum and am feeling hopeful that I can connect with some people who can help me. I have so many questions and my LLD only sees patients once a week so my time with her is extremely limited. Yet she participates in my insurance so I have to stay with her.
I just got my Igenex results and they are negative with some positive bands. These are the positive ones: for IGM: 41 (one plus) and for IGG: 41, 58 (two pluses) and 31, 34 and 39 are IND.

On the tests done through LabCorp everything was negative except my CD57 which was 56. I also have low vit d levels (and they seem to stay low even though I keep adding another 1000mg (now taking 3000) and borderline low thryroid.

My primary care dr says I have chronic fatigue syndrome (we know what that means) and the lyme lit dr says my symptoms are all like her lyme patients (fatigue, breathlessness, hand numb at night, sleeplessness, sweating, achy joints that move around, been sick a ton the last two years... immune system seems compromised).

This might be too much information but since I'm new here I thought I'd throw out some basics about where I am. I'd love to hear if anyone has similar igenex results and how they have moved forward - what their lld's have suggested.

Great thanks to all here!
Posted 7/31/2014 10:58 PM (GMT 0)
Hi Minee!
Welcome to our community!! I'm so glad that you already have a Lyme Literate doctor! Do you know if they were trained by ILADS standards? This will differ from IDSA treatment standards. We would like to see you get the best possible treatments.

Labcorp isn't really a good lab to use, as they don't train their staff how to read the tests properly and they don't usually use the right testing materials - but since you already have some positives on your test, here is what I understand those bands mean:
Band 41 indicates the tail of the bacteria, and can cross react to other infections other than Lyme like Yaws and Pintas, and Relapsing Fever.

Band 58 indicates Borrelia Afzelli, which one of the strains of Lyme.

Band 31 - indicates OspA - Outer surface protein "A" - which is specific to Bartonella (a co-infection of Lyme) according to new research: www.ncbi.nlm.nih.gov/pmc/articles/PMC148071/

Band 34-indicates OspB - Outer surface protein "B" - Specific to Lyme (does not cross react)

Band 39 - indicates BmpA -Bacterial Membrane protein "A". Also specific to Lyme (does not cross react)

Even though you only had an IND (Indeterminate) it means that there was a weak positive reaction, only not enough of a positive reaction to consider it a 'fully' positive reaction. It's still enough for a properly educated doctor to treat.

I would encourage you to do some reading on this site about your thyroid:
www.stopthethyroidmadness.com/ I found this site to be incredibly helpful for my own thyroid issues.

You definitely did not give too much information!!! We are here to help you find the treatment you need to heal!
Posted 7/31/2014 11:21 PM (GMT 0)
I've been told by more than one Endocrinologist that the body uses 4-6000IU/day of Vitamin D. So if you are deficient, you may need doses in excess of 6000IU/day for a while to bring the level into the normal range.

Be sure to use the Vitamin D3 (cholecalciferol) form, as it is the best for the body. Ergocalciferol, or Vitamin D2, is much less effective (note that the Rx version of Vitamin D is usually 50,000IU of Vit. D2).

Also, you may want to include a Vitamin K2 supplement with your Vitamin D. Vitamin K2 helps calcium (absorption of which is aided by Vit. D) go into the bones where it belongs, instead of accumulating in the arteries...
Posted 7/31/2014 11:43 PM (GMT 0)
Minee62 - My tests were done by Labcorp too and IGG is present in 41 and IGM present in 23. But both say interpretation is negative....my Dr knew it meant it was suggestive of Lyme so she diagnosed it that way. Another helpful indicator was the CD57 was low - 37 out of 57. The insane herxing and symptom increase I now have once I started antibiotics was sort of confirmation for me.
Wish I knew how these results compared in severity to others but maybe the testing hasn't come along that far yet.

Treatment: Have been on 1000 mg of Ceftin for 3 months...and counting. Lots of supplements and change in diet.

Post Edited (RTF) : 7/31/2014 5:50:41 PM (GMT-6)

Posted 8/1/2014 3:59 AM (GMT 0)
Thank you all so much for your quick replies and helpful information. I was amazed how disappointed I was when I got the "negative" results on the igenex tests. It felt like someone was telling me it's all in my head. And some days I feel fine so I think maybe it is. Then other days I feel like I'm trying to walk through really thick air and I can barely get a good breath. And all the other symptoms. Some days I can work out, other days I am so tired it's all I can do to cook for my kids. I really wanted some certainty with the Igenex tests.. the LLMD thought it was very likely the results would come back positive, although she still thinks I have lyme and will likely continue to treat me as such. It feels like a leap of faith when all the tests tell you you don't have it. Anyway, thanks again for everyone's comments.. it's very helpful to hear other's stories.
Posted 8/1/2014 4:19 AM (GMT 0)
Our cd57 and igenex results almost match. Also vit d issues. Take 5000iu per day and can barely stay at 50.
Posted 8/1/2014 4:25 AM (GMT 0)

Roxie60 said...
Our cd57 and igenex results almost match. Also vit d issues. Take 5000iu per day and can barely stay at 50.

Gosh, after 10 years how do you stand it? I so hope you've found a great, compassionate dr and that you are finally starting to feel better! Have you noticed any improvement? Good luck to you!!!
Posted 8/1/2014 1:07 PM (GMT 0)
You could look into the fry test. They actually look at the actual blood and try to identity infectious organisms in it.
Posted 8/1/2014 2:16 PM (GMT 0)
Roxie, Vitamin D levels of 50 are normal to my understanding (maybe I'm misinterpreting what you wrote?). My Vitamin D was most recently 19 (I have malabsorption issues due to Crohn's) and my doc said it should be at least 40, so I'm taking 5000IU/day.
Posted 8/3/2014 12:53 AM (GMT 0)
Have any of you taken NT Factor and have you found it helpful?
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