Need a decent reliable test for Borrelia and other infective organisms

[duncan]

Well, close, the bull's eye rash is considered almost universally as Lyme-specific.

But if you are asking me if I agree that there is little out there in the way of signs and symptoms and labs that would confirm chronic Lyme as such, I would have to answer yes. The same holds true with acute Lyme, early disseminated Lyme, late stage Lyme, and what some refer to as PTLDS.

All this means is we have crappy diagnostics. But one tries to work with what one has, yes?

Your last sentence is undone by my claim. I have had more than one EM over time, with a diagnosis of chronic Lyme, and I am diagnosed with ME/CFS. Also, why would I ever agree that no one on PR has ever had an EM? (You wrote something to the effect that no one on PR had ever developed Lyme-specific pathology, I think.) I'd wager many have.

Regardless, your sentence doesn't carry that much weight - about as much as mine as an anecdote - since you wrote that there is pretty little evidence that any one with chronic Lyme has ME/CFS(or visa versa); but the two are not mutually exclusive. It make about as much sense as proposing that someone with ME/CFS is not capable of developing Lyme. Ask any ME/CFS expert.

 

[Scarecrow]

It is up to the commercial labs to show that their tests mean something.

Then we're well and truly stuck. If they're not compelled to demonstrate that their tests are reliable, they won't do so unless they are confident of significantly enhanced future financial gain. What regulation applies to commercial labs? I assume in my naivety that there is some sort of licensing system but what standards of proof apply before you can sell a test?

Until we see some properly designed studies in the literature it seems to me sensible to assume that there is no evidence.

That's what I do assume and it's an uncomfortable position to be in.

 

[msf]

Perhaps you don´t have to be great at stats to see that, Prof. Edwards, but you do have to stick to a false premise.

Here is a recent comparative study: http://www.ncbi.nlm.nih.gov/pubmed/25182244

 

[msf]

Oh, and I would hope that the director of infectious disease testing in the UK would be aware that one possible explanation for Igenex testing positive more often than the others is because it is a better test.

 

[Jonathan Edwards]

Perhaps you don´t have to be great at stats to see that, Prof. Edwards, but you do have to stick to a false premise.

Here is a recent comparative study: http://www.ncbi.nlm.nih.gov/pubmed/25182244

What was the false premise? The abstract of the study you posted seems uninterpretable since there are no numbers at all! Just what was 'surprising' or 'considerable' or something. I am not sure what point it illustrates.

 

[JaimeS]

LTT ELISPOT for Borrelia from Armin Labs

Thank you, Daffodil!

-J

 

[Jonathan Edwards]

Oh, and I would hope that the director of infectious disease testing in the UK would be aware that one possible explanation for Igenex testing positive more often than the others is because it is a better test.

Of course they do, but there is no reason to favour that interpretation. There is a good reason to doubt it.

 

[msf]

Yes, I don´t have access to the full article, but their statement of highly discordant results agrees with other comparative studies of Lyme tests.

What is that good reason exactly?

 

[Scarecrow]

Yes, I don´t have access to the full article, but their statement of highly discordant results agrees with other comparative studies of Lyme tests.

All the abstract tells me is that the tests may not be completely reliable, but I don't think that's news to anyone.

Oh, and I would hope that the director of infectious disease testing in the UK would be aware that one possible explanation for Igenex testing positive more often than the others is because it is a better test.

Yes, but the other explanation is that it's a worse test. As a potential customer, how do I tell?

 

[Jonathan Edwards]

Yes, I don´t have access to the full article, but their statement of highly discordant results agrees with other comparative studies of Lyme tests.

What is that good reason exactly?

The lack of published validation.

The abstract seems to have about the same number of comments on results being consistent and being inconsistent. And since they are testing independent commercial labs I am not sure what the conclusion would be.

 

[msf]

Well, we had this discussion on the other thread, and it went on for about a 1000 pages, so I will bow out at this point.

Oh, and the stats may not have seemed difficult to you, but the interpretation of the study I quoted does not seem difficult to me.

 

[JaimeS]

So, our stance is that Lyme tests are useless, and the diagnosis of Lyme is useless; and knowing you have Lyme, or that a test tells you that you have Lyme, is meaningless.

And that any doctor who tells you that you have Lyme is misguided or deliberately misleading, because Lyme is an imaginary diagnosis; or at the very least, Lyme is an infection impossible to accurately diagnose.

Are we going to go back to how these tests work? Elispot tests work through the well-documented action of substrates and enzymes. ELISA has been used to test for hundreds of different illnesses. Presumably they don't work as well? Or is there something special about Lyme that makes Elispot work for other illnesses but not for Lyme? People who have been told they have tuberculosis were lied to?

Okay, definitely signing off. This thread is argumentative and seems more for the purpose of kicking dust into the air than addressing the initial topic.

-J

 

[JaimeS]

in the UK you do not need another doctor to sign up to give you the test, since KDM can get Infectolabs to send you the test kit,

Thanks, msf - he didn't order it, he suggested my GP do so.

Would your doctor be drawing your blood for you?

Yes.

Thanks again, guys.

-J

 

[Scarecrow]

So, our stance is that Lyme tests are useless, and the diagnosis of Lyme is useless; and knowing you have Lyme, or that a test tells you that you have Lyme, is meaningless.

And that's why I normally stay clear of Lyme threads. They just induce feelings of doubt, fear and guilt like no other.

Anyway, best of luck!

 

[duncan]

I want to add that just because none of these tests is conclusive, they are far from meaningless.

If I had significant neurological symptoms and a doctor ran a Syphilis test on me, and I came up positive for Syphilis antibodies, I would think that meaningful. I would act on it.

It's a step-by-step process. Demonstrating Bb antibodies, if you can do it, is one of the steps. It is a hazy process, one that is frustrating for its lack of an indisputable diagnosis; however, for right now, it's the best we have.

It becomes a personal decision. For me, I want to know if I carry Bb antibodies. It is important for me to know if I have been infected with Borrelia. I may not know for certain if it's just an echo from a resolved infection. I can stack up my symptoms with my lab results, though. I can read the evidence that - even with treatment - up to 20% of Lyme patients remain sick.

Knowing that I have Bb-specific antibodies will help me with possible treatment decisions and directions.

Still, yes, there is uncertainty - not for lack of looking on my part, though.

 

[Rlman]

@JaimeS Igenex is considered the best blood test in the lyme community in USA/CANADA. But many people with lyme+ coinfections can still test negative. Some also do a challenge with abx or lyme herbs before doing the test. There are tons of informative lyme groups on facebook btw . Lyme is a diagnosis based on symptoms not just blood test.

 

[drob31]

If Lyme is the great imitator, then wouldn't the pathology resemble almost anything?


It's sort of like hypothyroidism, which has over 300+ symptoms.

 

[duncan]

@drob31 : Yes, or it least it pretty much can.

Interestingly, Syphilis, like Lyme, is a spirochete bacteria. It, too, is nicknamed the Great Imitator. Syphilis is also notoriously difficult to culture, and just as difficult to cure once it has progressed to a later stage (or at least it once was).

 

[Daffodil]

Oh, and I would hope that the director of infectious disease testing in the UK would be aware that one possible explanation for Igenex testing positive more often than the others is because it is a better test.

a top CFS specialist, whom i believe thinks Igenex gets false positives, told my friend that if someone is negative at Igenex, they DEFINITELY do not have Lyme.

Well, I was negative at Igenex and positive with the ELISPOT

 

[JaimeS]

Some also do a challenge with abx or lyme herbs before doing the test.

Thanks for that suggestion. That's logical, but I hadn't thought of it. My probiotics seemed to bring it on pretty strong. I'll give that a go.

-J