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Still confused about IGeneX test!

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Posted 2/23/2015 9:51 AM (GMT -5)
Happy Monday everyone!  I started reading the book Healing Lyme by Buhner and it made me think about my IGeneX testing.  In my first ever post here I had asked the Lyme community if they could help me decipher what my lab results meant from IGenex, and whether it looked like I had Lyme or not.  I definitely have Bart, as it clearly indicates a strong positive on my IGeneX results.  The one thing I'm really confused about is whether I definitely have Lyme or not.  My LLMD seems to think so, as he indicated Bart always accompanies another infection like Lyme.  My one contention however is on my IGeneX test it indicates negative for both the CDC and IGenex Western Blot, as well as negative for the genomic and plasmid form of Bb through the multiplex PCR test.  Through my clinical findings and a lot of my symptoms, it seems to be consistent with Lyme and Bart (although there are some musculoskeletal problems associated with my symptoms).  Here is a link to my original post with my Western Blot bands.  Can someone help clarify this for me, it all seems very complex.  On the one hand my LLMD says I have Lyme and Bart; and my Western Blot shows enough positives or IND on specific bands to indicate Bb or a presence of it.  On the other, the genomic and plasmid PCR testing both show negative.  Is it possible that the lyme bacteria is smart enough to evade and hide from PCR testing but show up positive as an immune response? https://www.healingwell.com/community/default.aspx?f=30&m=3318109 Thanks! Dave            
Posted 2/23/2015 11:12 AM (GMT -5)
"Is it possible that the lyme bacteria is smart enough to evade and hide from PCR testing but show up positive as an immune response?"

YES.

You tested positive on Lyme specific bands 93. That's enough to indicate Lyme.

Posted 2/23/2015 12:01 PM (GMT -5)
Hi Sarah, thanks for your response.  I guess I'm just confused, scared and really, REALLY eager to get healed and back to my normal life.  But again, who on this forum isn't :).
Posted 2/23/2015 5:23 PM (GMT 0)
Here is the site that I use to help interpret these test results:www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense - meaning only one strain of the over 300 known strains of Lyme that is considered Bb, ss. So considering this - you have tested positive on these Lyme specific bands 23- 25, 31, 34, 39, 83- 93. That's quite impressive for those of us who can't test positive at all! Really, with results like this, there is no way you don't have Lyme. If you don't have a lot of symptoms, it's because your body is handling it better than a lot of others, not because you don't have it.
Posted 2/23/2015 12:34 PM (GMT -5)
Hey Traveler,
I always love your responses! Very thorough and detailed :). I am just starting to read Healing Lyme by Buhner where he expalins all of this is great detail, so my hope is to become as educated as some of you about Lyme and it's co-infection. My symptoms include:

bilateral shoulder pain, knee pain (not 100% sure if the shoulder/knee pain is due to lyme or Bart or physical stuff going on like injuries/surgery/rehab that wasn't 100% successful or skeletal issues like a misaligned hip which I'm working with a chiro to get fixed)

burning in the soles of both feet
night sweats (not all nights but mostly)
anxiety
headaches
a bit of a clouded/foggy mind

I was diagnosed with Tourette's in college but had it most of my life (coincidence with Lyme or not?)

Plantar fascitis in both feet
Back pain
Insomnia and walking up at night
constantly feeling exhausted no matter how much I sleep or nap
Candida

Also- what do LLMDs consider chronic lyme vs. acute? Do they consider acute anything within a month or infection and chronic anything after, or is it really a sliding scale that depends on which LLMD you talk to?
Posted 2/23/2015 12:54 PM (GMT -5)
LOL! blush Thank you. I've been at this a while!!

I'll bet you will enjoy that book and will come away with a much better understanding - most do.

It's pretty much a sliding scale, to use your term. In reality, Lyme can go chronic (where it involves much of the body) in a matter of just 3 days according to the best articles that I have read.

You've also had good solid positive responses on Lyme specific bands in both the IgG and the IgM, so that indicates an active infection (the IgM) and a long term infection.

I don't really like trying to attribute a set of symptoms to one infection or another as they have symptoms that cross over. I had some pretty convincing foot pain when I had gotten reinfected with Lyme. I almost started my Bart treatments along with it, but the foot pain was the only indication that I may have had Bart - so I held off. Healing Lyme took care of that foot pain, so now I'm glad I chose the hold off on the Bart treatments!

Having said that (LOL!), a head's up - night sweats can be indicative of Babesia, especially if they are "soaking" sweats - although they don't have to be limited to nights only.

When I was in treatment the first time around, I didn't think I had Babesia.....until I was almost finished with my Lyme and Bart treatments! Then my Babesia symptoms all came roaring to the front!!
Posted 2/23/2015 2:05 PM (GMT -5)
Dave- I'm a bit confused as your results would indicate a positive IgM WB according to IGeneX (not CDC). You are showing two double-starred bands as + (41 and 83-93). That's enough for a positive IGeneX test.
Posted 2/23/2015 3:22 PM (GMT -5)
Hi ToddPaul,
I guess my confusion was the IGeneX test for each bands indicates lymes, but when I scroll to the bottom of my lab report it says the multiplex PCR test for Bb in both genomic and plasmoid forms were both negative.
Posted 2/23/2015 3:24 PM (GMT -5)
PCR tests are much harder to get a positive on than Western Blots.

I had a CDC and Igenex positive test, very positive, but my PCR was negative. That's just how they are.

Post Edited (sarahm620) : 2/23/2015 1:27:12 PM (GMT-7)

Posted 2/23/2015 4:17 PM (GMT -5)
If you think about the amount of blood in the body compared to what each tube holds, it's not much. For a positive PCR, there has to be DNA debris in what is in that tube for testing.

There is a much more detailed and "sciencey" explanation for it somewhere on this forum - but it's not in my head!! You can try posting about that specifically (why a negative PCR if you have Lyme?) and see if one of our 'science people' will see it and respond, or you can try using the search function to find the answer.
Posted 2/23/2015 4:20 PM (GMT -5)
Here's one!
"The Western Blot measures antibodies generated by the immune system, whereas PCR measures DNA of the Lyme bacteria itself.

PCR will only be positive if some Lyme happens to have gotten into the sample that was drawn...so a negative PCR cannot rule out Lyme."
https://www.healingwell.com/community/default.aspx?f=30&m=2465757
Posted 2/23/2015 4:30 PM (GMT -5)
Ahhhhhhh that makes a lot of sense! Thanks for the clarification! To add to the confusion, here's my follow up question. On my IGeneX results, it says both negative for CDC IGenex Western Blot. Based on my results for IGM and IGG, did IGeneX misdiagnose me? My LLMD seems to think I have Lyme especially with Bart!
Posted 2/23/2015 4:33 PM (GMT -5)
No, Dave. Having one positive band that is indicative of Lyme, which you do, is enough. You have to have a certain number of bands for Igenex to call it positive. Trust your LLMD.
Posted 2/23/2015 4:35 PM (GMT -5)
No, Igenex and your doc are right. The CDC doesn't want to recognize acute Lyme and is running away from the subject of chronic Lyme. It's a huge political fight that we Lyme patients are all caught in the middle of.
Posted 2/23/2015 4:46 PM (GMT -5)
Thank you all for helping me better understand this, I apologize for so many annoying questions. I wonder what it would take for government and insurance companies to recognize chronic lyme exists and to be able to provide better diagnostic tools to treat this disease earlier on.
Posted 2/23/2015 6:22 PM (GMT -5)
Dave- You're not seeing the whole result.There should be two results for the IgM and two for the IgG so you should see an IGeneX positive on the IgM because all you need is two double-starred bands which you had. The CDC result is not what we or LLMDs go by as the guidelines are too strict as others have pointed out.
Posted 2/23/2015 7:33 PM (GMT -5)
From the Igenex report:

Igenex criteria - IgM WB considered positive if two or more of the double starred bands are present from either Group 1 or Group 2
Group 1: 23-25, 31, 34, 39 and 83-93
Group 2: 23-25, 34, 39, 41, and 83-93

Since you had 41 and 83-93 = +, you are Igenex positive for IgM (Group 2)
Posted 2/24/2015 12:42 PM (GMT -5)

DaveNJ41 said...
Thank you all for helping me better understand this, I apologize for so many annoying questions. I wonder what it would take for government and insurance companies to recognize chronic lyme exists and to be able to provide better diagnostic tools to treat this disease earlier on.

First of all, they aren't annoying questions, they are just questions that you need answered - and that's part of what we can help with!! :-)

As for this: "I wonder what it would take for government and insurance companies to recognize chronic lyme exists and to be able to provide better diagnostic tools to treat this disease earlier on."

Ha ha ha ha! (we need a little guy that's rolling on the floor laughing for this!) No offense intended though. First they have to recognize that Lyme disease is really an epidemic - actually, it's a pandemic, but we won't go there.

Then they have to acknowledge that they were wrong and correct many aspects of testing and treatments that are currently "recommended". The ILADS guidelines and Doctors are kind of their sore spot - they wont' shut them down as they are actually helping people, yet they have to all operate under this 'cloak of secrecy' in order to keep going. The Gov't would be under a lot of stress if it admitted that it has been wrong all this time, so it won't do so willingly - at least that's my opinion and I've been involved with this since 1999.

From what I can see, we have to force the gov't hand by getting the states to recognize the issues and change first. New York and a couple of other states are just now getting some things right, and I'm working in my own state to get things headed in the right direction as well - as are others here I'm sure.

Keep asking those questions!! It's the only way to learn!!
Posted 2/24/2015 8:11 PM (GMT -5)
Dave,

First, I am very sorry to hear of your suffering, and your uncertainty of accurate diagnosis.

Based on my experience and on what I have read, I have formed a few opinions:

1) If the Igenex WB shows any kind of antibody response at all, then the test is probably positive, except in a few cases of cross-reactivity.

2) My daughter was not CDC positive while she was sick, but she was very CDC positive AFTER she was a lot better.

Conclusion: As per several opinions that have already been stated, this illness is chiefly a clinical diagnosis.

Don
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