Need a decent reliable test for Borrelia and other infective organisms

[JAH]

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.

-J

And more importantly, not having a positive blood test, spinal fluid test, urine DNA test, tick bite, or rash means nothing. (Not sure of that grammar).

Otherwise. yeah, I think you nailed it.

-J

 

[drob31]

And more importantly, not having a positive blood test, spinal fluid test, urine DNA test, tick bite, or rash means nothing. (Not sure of that grammar).

Otherwise. yeah, I think you nailed it.

-J

That's allot of tests.

 

[JAH]

That's allot of tests.

Tip of the iceberg.

 

[Rlman]

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

there's also a newish expensive test by advanced laboratories that cultures the blood over some time to see if lyme appears. don't know if its scientifically validated yet though. it helped the blogger lymeinside get diagnosis when even igenex was negative though he had clear lyme symptoms. if one is severely ill then the immune system might not be strong enough to make antibodies. BTW, the website of betterhealthguy is a great lyme resource. also the blog lymedout.

 

[JaimeS]

there's also a newish expensive test by advanced laboratories that cultures the blood over some time to see if lyme appears. don't know if its scientifically validated yet though. it helped the blogger lymeinside get diagnosis when even igenex was negative though he had clear lyme symptoms. if one is severely ill then the immune system might not be strong enough to make antibodies. BTW, the website of betterhealthguy is a great lyme resource. also the blog lymedout.

Thank you!

-J

 

[bertiedog]

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.

All I would like to say is that I come across many on the UK Lyme Facebook site who have got their lives back by mainly following a comprehensive antibiotic protocol for Lyme after getting positive tests from either Infectolab, Armin or Igenex but a negative Western Blot from the NHS

A few of them have even climbed mountains after treatment whereas the previous year they were bedbound with the NHS just offering them CBT and graded exercise! All of them had a useless diagnosis (their wording) of ME/CFS which offered them no hope whatsoever but they are delighted they didn't ever believe in it.

Pam

 

[JaimeS]

there's also a newish expensive test by advanced laboratories that cultures the blood over some time to see if lyme appears. don't know if its scientifically validated yet

To me, that seems like a no-brainer. So long as the sample isn't contamined, if it grows Lyme, you have Lyme!

-J

 

[JaimeS]

That test is available here: http://www.advanced-lab.com/spirochete.php

BUT there are claims that the samples are often contaminated with lab-strains of Borrelia. (http://www.medscape.com/viewarticle/823840)

So.... no closer.

-J

 

[duncan]

Some believe the CDC did a hatchet job on the ALS test.

That may or may not be true.

What is true is, as far as I know, the test has yet to be validated. It's going on a couple years now, I think. Last I heard two universities were seeking to substantiate claims. For this community that went thru the XMRV validation fiasco...

The test is a culture test. That is potentially a game-changer. So one might think if there is any merit to it, multiple parties would be pressing to iron out any potential wrinkles; however, it seems in Lymeland they are quick to bury their dead. And maybe premature.

 

[JaimeS]

it seems in Lymeland they are quick to bury their dead

Lol! Pretty awful way of putting it.

-J

 

[duncan]

No day is complete without a good dose of hyperbolic mixed-metaphors. Just doing my part...

 

[JaimeS]

No day is complete without a good dose of hyperbolic mixed-metaphors. Just doing my part...

Hahaha, I wasn't criticizing your diction, @duncan .... just acknowledging the horror inherent in the situation.

There is so much cross-contamination in the world of microbiology. I wonder what, if anything, can be done about it. I remember reading that there were some serious issues with cells becoming replaced by HeLa and screwing up everyone's data.

-J

 

[duncan]

Oh, I have thick skin when it comes to my writing anymore. Oddly, one of the prominent areas that seems to have been impacted is my use of prepositions. I find that odd, and I'm struggling to get use to the deficit, but it is still ceaselessly annoying. I mix up withs and ofs and tos and betweens...And mixed metaphors? Ugly.

But you were talking cross-contamination.

Were it only that simple, @JaimeS .

So, there were problems with the lab, but you have to peer a little deeper into what B. Johnson and company were actually criticizing. It might not be what you think.

The European species thing is puzzling. Not so much that there is evidence of it - does anyone really believe garinii and afzelii aren't in North America? - but the degree of prevalence.

Then you might want to consider if any of those who took exception to the paper and the ALS test had any horse in the race. (Hint: At least one of them might)

You probably should question why the results from the validation efforts haven't emerged.

A member here - LHCTom - did a great evaluation of criticisms launched at the lab. I think it is somewhere on PR.