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Advice on Igenex Test

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Posted 10/20/2017 1:58 AM (GMT 0)
Hello all, my life has been an absolute whirlwind of events, I can't even keep my head above water. Which is partly why I am really starting to feel like I am relapsing. This happens every fall, and every fall it is different. But this time it feels worse. I am not panicking, I am in control, and I am fine with it, but I have gotten quite emotional over the past few weeks, I will have to admit.

back when I first got sick, my whole family was sick and we were out alot of money for all of the Dr appts and treatments and tests. I was clinically diagnosed with lyme, so I never bothered with the IGenex test, however I did pay Igenex to get my eldest daughter tested bc it was necessary in order for her to get treatment. was worth every penny, bc she came back flaming positive.

I have another thread to write about my kids again, bc we are still going back and forth with issues (although minor)

however, in the meantime, I always wanted to get an Igenex test for myself. At the moment, I want to do it for 2 reasons, just to have on paper that I do indeed have lyme (hoping for positive IGGs), and out of curiosity to see if my IGM is positive (Bc i was dealing with Candida for a long time, but now I am wondering if it could be Lyme or even Bartonella that is still lingering in me as well). so I would get the Western blot and Bartonella tests.

Second reason, my husband does not believe that lyme is "resurfacing", he thinks its gone and never will come back, so when i mention it he gets mad and thinks I blame lyme for everything and that I have a mental issue so to speak. he doesn't completely understand the IGG or IGM thing, so if he sees positive, that will be enough for me to prove it to him.

For all i know it may not come back positive - I just need support and advice here. I have been very lonely in thinking about all of this stuff. I get upset alot, even though I am not even close to being sick like I was, I just wish it was all cleared up in me and most especially my kids. I haven't really been able to talk to anyone about this, bc so many people look up to me as the "lyme survivor" which I am, but I feel like I am being deceitful bc i wasn't strong enough (in relation to my willpower to diet) to remain a survivor and I keep having relapses.

I want to start taking oil of oregano or the sort to start working towards killing something off, I would start ABart, but I am afraid to try any herbs bc i don't want them to mess up the test. I am hoping to wait 3 more weeks, bc that is when I can get the test. what do you guys think, do you think i would be wasting my money? I don't know

My symptoms are - insomnia (not every night, but more often than usual), shoulder pain, foot pain, muscles more sore than usual after exercise in strange spots, reflux, upper back pain (below neck on spine) and anxiety when I eat/drink the wrong foods, esp. alcohol. The last two are HUGE clues for me.

thanks for any support or advice, i really need it.

Post Edited (Chapelle) : 10/19/2017 8:01:36 PM (GMT-6)

Posted 10/20/2017 2:27 AM (GMT 0)
Chappelle-I'm really sorry to hear that you're having issues again. It's my opinion that we only go into remission, not cured. If this time of year is particularly stressful for you with your girls going back to school and other issues it's very possible that your immune system takes a hit. That's an open door with a welcome sign for the remaining bugger's in your system to come out and play.

Igenex supposedly has a new test. Not sure what it is but the one we all took had become unreliable. I'd opt for Armin labs if I was doing any testing now. That's the lab in Germany. The cost is pretty equal.
Posted 10/20/2017 2:32 AM (GMT 0)
Thank you!!

why did it become unreliable? is it bc the IGM remains whether you have active lyme or not? that is what I am thinking.....

armin labs is interesting, but i would worry about getting the specimen to them in a timely manner, esp. this time of year!
Posted 10/20/2017 2:51 AM (GMT 0)
You sound just like my husband. He got lyme, did Buhners and then quit before I thought he should. He was fine for 6 months or so and then bang..... symptoms came back little by little. Not horrible like the first go around, but still there. He is super good at the eating part. He just hates taking "stuff."

He has now started with Japanese Knotweed, cat's claw and a couple other things (I only pay attention when he asks me what to start taking now).

I am so tempted to put him on Rawls Vital Plan just because it would be much easier for him to take. He so dislikes taking so many things, so many times a day.
Posted 10/20/2017 4:12 AM (GMT 0)
jrspf - I didn't know that about the Igenex test?

I do know there are, have always been false negatives...but how did it become unreliable?
Posted 10/20/2017 4:16 AM (GMT 0)
Chapelle - I'm so sorry you are dealing with this now. But, I know you will be able to get into remission again.


I don't think it would be a good idea to test with the WB because even if you're in remission, you could still be producing antibodies and showing bands for lyme. So, it MAY indicate active infection...but may not.

And, you could have active infection, but not have a positive test result. (with the WB, false negatives are a-plenty.)


I know that many LLND's here in my Province are using the Armin Lab testing.
They also have been using it to test progress...and even indicate when you're close to/in remission.
I'm not sure if that is valid, though.
Posted 10/20/2017 4:41 AM (GMT 0)
I don't think it's a problem getting the test to Armin. Way too many doctor's are using the lab now. They must have some kind of reliable well working system in place.

Girlie-I'll email you.
Posted 10/20/2017 5:08 AM (GMT 0)
From what I understood, the new IGeneX test was discussed the other day - looks like it's differentiating from Bb and Borrelia relapsing fever.

So I'm not sure this really has any impact on getting a more accurate Bb Lyme disease dx.

These tests are always going to be reliable because of the serology nature and Bb's ability to disable and evade immune response, and because of the surveillance criteria within which the tests and qualifying results are geared toward-- based the early science and narrow interpretation of Bb's manifestation into Lyme disease. The tests weren't designed to capture all the Lyme cases, which is why CDC states Lyme is a clinical dx.

Nothing's changed.

Many people have had success with DNAConnexions urine test (although I didn't).

-p
Posted 10/20/2017 5:30 AM (GMT 0)

jrpsf said...
I don't think it's a problem getting the test to Armin. Way too many doctor's are using the lab now. They must have some kind of reliable well working system in place.

Girlie-I'll email you.

Yes, I agree....We're sending to Armin Labs - here in Canada...so shouldn't be a problem from the U.S.
Posted 10/20/2017 5:35 AM (GMT 0)
So here is what Igenex says about their new test:

Lyme ImmunoBlots IgM and IgG
Although IGeneX Lyme Western blot prepared from Borrelia burgdorferi strains B31 and 297 is one of the most sensitive test, it does not detect antibodies to all the B. burgdorferi sensu lato antigens. To develop all inclusive Western blots would be very expensive and impractical. Therefore, we have developed a Lyme ImmunoBlot that is very specific and inclusive of most species of B. burgdorferi sensu lato for clinical use with the following advantages over a Western blot.
• The specificity of the ImmunoBlot is 98.0% for IgM and 98.7% for IgG. This is higher than the traditional Western Blot.
• The 31kDa Epitope confirmation test will not be required on patient samples tested by Lyme ImmunoBlots.
• The sensitivity of the Lyme Immunoblot is 90.9% with well-defined samples.
• The ImmunoBlot has better sensitivity compared tothe current Western Blot, because it t is designed
to detect antibodies to major B. burgdorferi sensu lato specific antigens from North America and European strains as listed below:
B. burgdorferi B31B. burgdorferi 297
B. californiensis
B. mayonii B. afzelii
B. garinii
B. spielmanii B. valaisiana

TBRF ImmunoBlots IgM and IgG
The TBRF ImmunoBlot is designed to detect antibodies to specific antigens of TBRF Borrelia in human serum. It detects antibodies to B. hermsii, B. miyamotoi, B. turicatae and B. coriaceae. Based on in-house studies these blots detect antibodies to North American, European and Australian strains of TBRF Borrelia in patient serum samples. The specificity of the TBRF ImmunoBlot is 94% and 98% for IgM and IgG respectively.


Lyme IGX Spot
The Lyme IGXSpot is an Enzyme-Linked ImmunoSpot (ELISPOT) assay that detects human T cells reactive to B. burgdorferi specific antigens in vitro. ELISPOT is a widely used method for detecting and monitoring cellular immune responses to specific antigens.
Posted 10/20/2017 5:43 AM (GMT 0)
Hmmm....

Sounds like the Immunoblot is at least including responses to more than just those two strains so that would be an advantage. But there is still the general issue with Bb's ability to interfere with the immune response. And are these CDC-approved tests?

Sorry - not trying to discount them but we're still up against the same rigged system.

-p
Posted 10/20/2017 5:49 AM (GMT 0)
I'm not sure about CDC

Their third test listed is an Elispot - that is what Armin Labs have been doing...


I wonder if it's replacing their WB...does it surpass ...or is it an 'extra' tool to use?
Posted 10/20/2017 5:59 AM (GMT 0)
I guess we need to figure this out since we're always recommending IGeneX WBs.

-p
Posted 10/20/2017 6:18 AM (GMT 0)

Pirouette said...
I guess we need to figure this out since we're always recommending IGeneX WBs.

-p


Yup....
Posted 10/20/2017 10:12 AM (GMT 0)
Girlie said "I don't think it would be a good idea to test with the WB because even if you're in remission, you could still be producing antibodies and showing bands for lyme. So, it MAY indicate active infection...but may not."

does everyone agree? so then it wouldn't be worth it for me, correct? and it wouldn't be worth it for anyone in my family then, especially my oldest daughter who indeed did test positive on igenex 3 years ago. It is so frustrating that at this point, all of us can only be diagnosed clinically. That if I have any concens for my kids, I can never be sure if lyme is in or out of remission.

Also, Thanks girlie for your vote of confidence, I know I will get myself in remission again! That is why I am not panicking.

Post Edited (Chapelle) : 10/20/2017 4:16:27 AM (GMT-6)

Posted 10/20/2017 4:48 PM (GMT 0)

Chapelle said...
Girlie said "I don't think it would be a good idea to test with the WB because even if you're in remission, you could still be producing antibodies and showing bands for lyme. So, it MAY indicate active infection...but may not."

does everyone agree? so then it wouldn't be worth it for me, correct? and it wouldn't be worth it for anyone in my family then, especially my oldest daughter who indeed did test positive on igenex 3 years ago. It is so frustrating that at this point, all of us can only be diagnosed clinically. That if I have any concens for my kids, I can never be sure if lyme is in or out of remission.

Also, Thanks girlie for your vote of confidence, I know I will get myself in remission again! That is why I am not panicking.

If you get a negative...it could easily be a false negative.

If you get a positive....how do you know if it's an active infection?


i'm wondering if you should look into the Armin Labs testing. It's a lab we are hearing more and more of.
Here in my Province the majority of the LLND's are using it now. I have heard people say that they also re-test to gauge progress...whether the lyme is still active.

** I don't know enough about the Armin lab testing to know if you CAN gauge progress with repeated testing. But, it's worth looking into ***
Posted 10/20/2017 5:11 PM (GMT 0)
when i called igenex a few years ago, the representative confirmed that if you have a positive IGM it is indicative of a current infections. Positive IGG is obviously past infection - how true/accurate is this is the question
Posted 10/20/2017 5:33 PM (GMT 0)

Chapelle said...
when i called igenex a few years ago, the representative confirmed that if you have a positive IGM it is indicative of a current infections. Positive IGG is obviously past infection - how true/accurate is this is the question

It's not that 'cut and dried'


Generally, IgM means active (but can be older) infection. But, we can't rely on the positive test AFTER we have treated and healed. This is why follow-up testing isn't used to gauge when we're done treatment.
If it was accurate, LLMD's would be using follow-up WB's.


"Therefore, the Jemsek Specialty Clinic acknowledges that a persistently positive IgM antibody response may qualify as laboratory confirmation for an active LD case."
Posted 10/20/2017 5:34 PM (GMT 0)
ok, so it would indeed be a waste of my money and time then, ok thanks!!
Posted 10/20/2017 5:44 PM (GMT 0)
Agreed - as unreliable as the serology tests are, they serve only to indicate the presence of the immune's response to Bb--if you're lucky enough to have a strong enough immune response. They do little to confirm how old or new or dormant or inactive or intense the manifestation of the Bb.

Ignoring the CDC's surveillance-driven protocols and criteria, one can work-around the limitations with responses to the Lyme-specific bands, etc. to confirm the presence.

But the primary issue is that Bb disrupts normal immune function and the persister characteristics of the various forms of Bb that your immune system cannot respond to.

So this means the IgM vs IgG isn't reliable, the amount of antibodies detected isn't reliable to tell you anything other than the presence of Bb.

-p
Posted 10/21/2017 1:00 AM (GMT 0)
Ladies-This thread so beautifully (in a sad way) sums up how messed up the Lyme world is.

On that note; I appreciate all of the input each of you has provided over the years. This journey has been easier due do it.

Janet
Posted 10/21/2017 1:31 AM (GMT 0)

jrpsf said...
Ladies-This thread so beautifully (in a sad way) sums up how messed up the Lyme world is.

On that note; I appreciate all of the input each of you has provided over the years. This journey has been easier due do it.

Janet

...and is exactly why it is so difficult trying to discuss this 'stuff' with non-lyme literate people in our lives ...they must think we're 'cray-cray'


This forum has united us in our fight to get well. Sadly, results aren't measured by how hard we have all worked to try and get there...or we'd be healed a looooonnnnng time ago.
Posted 10/21/2017 6:33 PM (GMT 0)
Hey Chappelle!

So sorry to read your thread my friend. Regarding the re-testing of Lyme you may want to consider having a Nanotrap test done. Of course it isn't foolproof, but it is a urine test that tests for a protein. My understanding of it (limited that it is) is that it will help one tell if they have an active infection or not: http://www.ceresnano.com/nanotrap-lyme-test I had one and it came back negative, which seems to be right on the money for me.

Frustrating about IgeneX - I had heard it was the gold standard for years and now it is questionable.

MM
Posted 10/21/2017 10:26 PM (GMT 0)
I believe the nano trap test has been available for a few years now...wonder why the LLMD's aren't using it?


Igenex hasn't changed....it's always been a test relying on our immune system to produce antibodies.
It has always had a high rate of false negatives.

We certainly do need a better test.

Mike - how do you know for sure you don't have Lyme anymore?
Posted 10/22/2017 1:38 AM (GMT 0)
Sending you big hugs Chapelle! This stuff is a rollercoaster. I think it's a great idea to have A-bart and oil of oregano on tap. I've recently integrated both into my protocol and they are effective for me, as well as olive leaf extract which I'm liking.

I'm very sorry for the tensions in regards to your health and relationship, that is very tricky to manage because when we go through this stuff we need support, especially from those closest to us. I wish I could offer more advice or help but all I can say is we are behind you now and always. Please message me anytime if you ever need anything or need someone to talk to.

I don't know of the value of the testing at this point, but if it can help back you up that would be nice. I tend to think that when you've lived through this stuff long enough it is generally good to go with your gut and intuitions, and if you're symptoms and body are indicating to you a relapse then that is what I would go with. Doesn't mean intuitions will always be 100% correct, but I can tell you I have a pretty sharpened sense of what is going on with my body given my long experience with these diseases and my gut has been pretty spot on. And I think this is the case for many other patients as well.

Keep hanging in there!!!
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