Where to get a test for Lyme disease.

[msf]

Their Lyme research reminds me of their CFS research: http://lymeresearchuk.org/links/

 

[Jonathan Edwards]

Ah. Excuse all of my non-sequiturs and try to be patient with me.

So, if the C6 test - created in the US - is executed in the UK, its results are different than if executed to the same specs in a US lab? So all the testing I have had done at the NIH was foolhardy on my part? Only UK labs know how to do it right? I should have had the C6 done in the UK?

Silly me. I should alert the manufacturer - based here in the US.

"Presumably" one way to distinguish between ME/CFS and Lyme is by testing for Lyme.

I can be patient. Non-sequitur again since we were talking about 'private labs in other countries' in response to the question. Nobody compared UK service labs with NIH.

 

[duncan]

You implied US labs were inferior...or rather, I inferred that based on your statement "...there are good reasons to think the tests from US labs said to be more 'reliable' are less so."

NIH labs are US labs said to be more reliable. Yes?

 

[Jonathan Edwards]

You implied US labs were inferior...or rather, I inferred that based on your statement "...there are good reasons to think the tests from US labs said to be more 'reliable' are less so."

NIH labs are US labs said to be more reliable. Yes?

No I did not. People in the US often seem to take umbrage when they think something american is criticised. The discussion was of private labs and the ones that seem to be a problem are in the US as far as I can see (and maybe the Low Countries). Elaine was NOT saying NIH is more reliable, she was referring to private labs - it says so in her post.

 

[duncan]

Hey, I'm not waiving the US flag here. I am just responding to your quote. So, which private labs? Imugen? Immunetics? These are just two that have good reputations in some circles.

Or are you talking testing facilities? Mayo? Stoneybrook?

I'm merely looking for clarification while trying to ensure I don't stumble over my non-sequiturs

 

[Daffodil]

@duncan ..i would think CFS and Lyme are mutually exclusive

 

[duncan]

Hi @Daffodil . If you are sick with ME/CFS, can you still be infected with Lyme through a tick bite?

 

[Valentijn]

@duncan ..i would think CFS and Lyme are mutually exclusive

Why? Research has shown that a variety of infections can trigger ME/CFS in a small percentage of patients with those infections. Why should EBV or Q-fever be known to trigger ME, but Lyme be presumed incapable of such a thing?

 

[Daffodil]

@Valentijn ..well.i mean i think CFS is intracellular bacterial infection....so maybe there is no CFS...

sorry bad fog..cant think

 

[Hanna]

@browny, Dr Myhill who is in the UK has joined also the lyme bandwagon. She recommends like many in Europe Infectolab or Armin labs. See her page :
https://www.google.co.il/url?sa=t&r...IWNben7khv64ua_KQ&sig2=DmXFyrQ7kM3OIwTFYDaFwA

www.drmyhill.co.uk/.../Lyme_Disease_and_other_Co-infectio...
(when I contacted her in 2010 for my ME/CFS and received treatment, Lyme was ignored )

 

[msf]

Prof. Edwards, I think you meant Germany rather than the Low Countries.

Or perhaps you meant both.

 

[browny]

Many thanks,
We have looked at Dr. Myhill's website before but was unaware she was now looking into lymes.
I will take another look, thank you.

 

[Ema]

I know the LTT is the one test for sure we know is not validated as reliable. Are you happy, Daffodil, that Elaine's daughter may get a misdiagnosis on the basis of your advice?

The LTT has been found to have around 90% specificity and sensitivity in studies so I'm not sure how for sure we know it is not reliable. That sounds pretty reliable to me.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/

I think that the question regarding misdiagnosis could just as easily be turned around the other way...so it is up to the OP to make her own decisions.

 

[browny]

Hi
We are and have been trying to find out what is causing my daughter's CF.
We are looking into all possible causes hence the test for lymes.
I personally think the term ME or CFS are names for a group of symptoms that have a cause that needs to be found.

 

[Valentijn]

The LTT has been found to have around 90% specificity and sensitivity in studies so I'm not sure how for sure we know it is not reliable. That sounds pretty reliable to me.

It's even better than that. Specificity (true negatives) is 98.7%, and sensitivity (true positives) is 89.4%. So the specificity is roughly equivalent to the standard test, meaning there's no increase in false positives, and the huge false negative problem in the standard tests has been improved upon considerably.

 

[Valentijn]

As @Ema said above, there is research showing that the LTT-Elispot is very accurate. Much more so than the mainstream estimates regarding the mainstream tests. I'd love to see some more replication regarding that test (and all Lyme tests) using people with indisputable Lyme status via culturing, but that literally never happens except with very small samples. They don't even use culturing to verify the standard tests - it's pretty shocking.

I've actually been reading a fair bit of Lyme research over the past couple months. Both regarding the alternative tests and the standard tests, primarily from researchers who exhibit a preference for the standard tests. And their conclusion is often that the tests are so unreliable that Lyme should be diagnosed and treated based on clinical presentation and history of exposure.

Researchers from a pharmaceutical company designing the C6 version of the ELISA with an NIH grant said the same thing, even in the process of showing that their newer version was as accurate as the then standard ELISA. (The C6 version was developed around 20 years ago to account for vaccines potentially interfering with results, and is now standard.)

 

[Undisclosed]

This thread is now closed for moderation purposes.

 

[Undisclosed]

This thread has been re-opened.

Please avoid personal attacks and off-topic inflammatory posts designed to provoke negative reactions.

Please review this thread prior to posting.

Thank you.

 

[Valentijn]

The discussion was of private labs and the ones that seem to be a problem are in the US as far as I can see (and maybe the Low Countries).

Those are interesting claims, and I don't believe I've seen any research supporting them, aside from the flaws with the urine test Igenex was using 20 years ago. Are you aware of some research which is relevant to the tests currently being used?

 

[Valentijn]

There are also some people being diagnosed and treated for Lyme Disease - sometimes in addition to having ME/CFS - on the basis of commercial tests that are not reliable and clinical histories that are not suggestive of Lyme Disease

One minor correction: most Lyme doctors treating based upon clinical presentation also frequently supplement the various Lyme tests (mainstream or alternative) with additional lab tests which could support or help rule out a diagnosis of Lyme.

I'm also not aware of any Lyme doctors attempting to treat Lyme in patients who do not have Lyme symptoms and some potential for exposure. Do you have a source for your claim that such inappropriate criteria are being used anywhere?

And finally, based on what I've been reading in published mainstream research, many of the Lyme researches recommended in their publications to treat based on clinical history and potential for exposure, due to the high rates of false negatives in the two-tier system. I haven't heard of any informed researchers or doctors who are involved with Lyme try to claim that the two-tier system is particularly accurate - quite the contrary in fact.