Whats the best borrelia test on the market?

ChookityPop

ChookityPop

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564
Judee said:
The one I see promoted most in the FB groups I'm in is Igenex but I cannot find on their site if they only ship to the US.

Sorry.
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Thank you! I have heard about Igenex, I will check it out. I want to find the most reliable test (if there is any) and order it:)
 
dylemmaz

dylemmaz

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136
igenex has notoriously high false positive rates if you use their in house bands (50% false positive). but if you use the cdc bands required for diagnosis they are okay (but a waste of money). there was a study done on this (don’t have energy to find it). i spent two years researching lyme because i thought i had chronic lyme but really i just got a false positive test result from a private company

i’d save your time and money and rather than spending money on igenex do a standard western blot through labcorp or quest, and a c6 peptide elisa (not the standard elisa). run these a few different times and you’ll have a good picture if you have lyme or not. if you test positive on either of these it’s very likely you have had lyme or have it. test two times to increase sensitivity. with igenex you’ll probably just get a false positive and think you have lyme even though you don’t. be careful with those testing companies
 
5vforest

5vforest

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dylemmaz said:
igenex has notoriously high false positive rates if you use their in house bands (50% false positive
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This gets repeated again and again but it's not very accurate information.

First of all, what is a "false positive" when there is no gold standard test?

Second, they updated their in-house criteria in response to that criticism. It was many years ago.

Third, there are many reasons why a "standard" Western Blot from a non-specialty lab can be totally useless.

I am all for criticism, and I have a lot of criticism of the Lyme world myself. But iGenex is probably the least shady of the labs, and also has the best ability to detect coinfections such as Babesia.
 
S

Spiderbaby

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36
The most important word in your question is "market" because that is exactly what is it, labs inventing tests for financial gain.
That is not to say all labs are in it just for the cash, there are some labs associated with academic research centers and charities, who publish the scientific basis for their tests, but from my experience these are thin on the ground.
Ive done the majority of Lyme tests on said market, Igenex (positive for their WB bands and CDC &CD57), 4 other labs for WB (all only positive for non-specific p41 band), LTT test from Infectolabs as it was then (barely positive and subsequently rubbished as an accurate test) and the latest being the Phage Borreila from REDlabs which was positive for Borreila Miyamotoi.

Obviously any form of Lyme diagnosis needs to be based on clinical symptoms fist and foremost with the tests only forming part of the diagnosis jigsaw. What @dylemmaz said is advice is solid, start with the most basic tests and work from there, depending where you living and what is available from your public health system etc.
If you still have questions or the tests are producing some but concrete feedback (some small band activation etc) then you could look into the more more expensive tests.
 
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dyllanmurphy

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72
5vforest said:
This gets repeated again and again but it's not very accurate information.

First of all, what is a "false positive" when there is no gold standard test?

Second, they updated their in-house criteria in response to that criticism. It was many years ago.

Third, there are many reasons why a "standard" Western Blot from a non-specialty lab can be totally useless.

I am all for criticism, and I have a lot of criticism of the Lyme world myself. But iGenex is probably the least shady of the labs, and also has the best ability to detect coinfections such as Babesia.
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False positive is when the person is healthy and their blood comes up positive. Now, in theory, certainly some of these healthy people could have Lyme antibodies from real exposure. Not sure how prevalent this scenario is. If you accept that the healthy people are actually healthy, using alternate criteria instead of CDC criteria for positivity generally leads to higher false positives (source: Fallon 2014). If you don't accept this assumption, then the waters are muddied considerably. So you're correct in a sense depending on a few things.

What people can criticize Igenex for is using alternate testing criteria with no scientifically publishable findings backing this decision. Why did they choose to use alternate criteria? Can they defend this choice to the broader scientific community? I don't think so. So this does make them a bit shady, I'm afraid.

I'm further afraid that their whole business model exists only because the current Lyme tests suck. They spread the idea by word of mouth (not by scientific scrutiny) that their test is 'better' because it's 'different', with no real proof.

That's basically grifting, and taking advantage of sick people to do it.
 
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dyllanmurphy

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72
To answer the OP, western blot, C6 ELISA, regular ELISA, well-researched tests which kinda suck, but they're the best we have at the moment. Lots of talk about creating better tests has emerged over these past few years, with nothing to show for it.

No need for specialty lab tests for Lyme (perhaps for coinfections, but that's another story). They have not proven to be better, and may in fact be worse.
 
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dyllanmurphy

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72
5vforest said:
https://igenex.com/wp-content/uploads/next-generation-lyme-disease-testing-igenex-2019.pdf

I suppose one could criticize this presentation for including information that is not published and peer-reviewed.

But if I was sick and suspected Lyme Disease, I'd want to get these tests.
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That's the point though, the devil is often in the details and peer review is meant to address this. If their new test is so good, publish an article and get it through peer review.
 
frozenborderline

frozenborderline

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4,405
5vforest said:
First of all, what is a "false positive" when there is no gold standard test?
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A false positive is when they get general population tested as controls to sick people with clinical diagnosis and its the same rates.


There isnt a perfect test in existence. And lyme is horrible and too little is known about it. But this doesn't mean we should throw out scientific standards and let private expensive quack laboratories and doctors prey on us. igenex has shown in no way that their test is superior to the CDC standard , and at least one well done study has shown that it is far worse.

The onus is really on them to show its accuracy with good control and non control groups.
 
frozenborderline

frozenborderline

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My illness started with lyme and for awhile I tried tons of antibiotics and then lyme herbs and all the crap that llmds push. Finally I realized the simplest explanation was the most correct. That all infectious diseases cause similar sequelae and syndromes and that this doesnt have to be due to an active infection. But even if it is due to an active infecrion , the studies for abx treatment of chronic lyme look very underwhelming. Like one slightly positive one and four negatives . And the positive one could be just from lowering glutamate.
 
ChookityPop

ChookityPop

Senior Member
Messages
564
frozenborderline said:
A false positive is when they get general population tested as controls to sick people with clinical diagnosis and its the same rates.


There isnt a perfect test in existence. And lyme is horrible and too little is known about it. But this doesn't mean we should throw out scientific standards and let private expensive quack laboratories and doctors prey on us. igenex has shown in no way that their test is superior to the CDC standard , and at least one well done study has shown that it is far worse.

The onus is really on them to show its accuracy with good control and non control groups.
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Is there any data on the titers of sick patients anywhere?
 
ChookityPop

ChookityPop

Senior Member
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564
frozenborderline said:
My illness started with lyme and for awhile I tried tons of antibiotics and then lyme herbs and all the crap that llmds push. Finally I realized the simplest explanation was the most correct. That all infectious diseases cause similar sequelae and syndromes and that this doesnt have to be due to an active infection. But even if it is due to an active infecrion , the studies for abx treatment of chronic lyme look very underwhelming. Like one slightly positive one and four negatives. And the positive one could be just from lowering glutamate.
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I didnt know that the benefits could be from lowering glutamate. Could you link to that positive study?

I find the fact that all of these different infections can stay active in tissues and organs without positive igm very interesting.
 
frozenborderline

frozenborderline

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4,405
ChookityPop said:
didnt know that the benefits could be from lowering glutamate. Could you link to that positive study?
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@Hip has noted that that class of antibiotics, beta lactam antibiotics, can lower brain glutamate. He has it somewhere. I dont know the specific study offhand bc it's just one of a million things about the illness I remember and not in my top few most important. They used iv ceftriaxone and got improvements in brain fog or cognitive fatigue in post lyme patients.
 
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