Publish-Palooza!

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Publish-Palooza!

Post by velvetmagnetta » Mon 25 May 2015 7:33

From the Marques paper:
Many tests for Lyme disease are being performed in patients with low likelihood to have the disease, a situation in which a positive result is more likely to be a false-positive.
Whenever I see this statement, I have to wonder, well, how does anyone really know this? If people who have a low likelihood of testing positive are testing positive, then maybe our assumptions of who is likely to have the disease are wrong. Perhaps endemicity has now become meaningless, at least in the United States, and people who live in previously non-endemic areas who go to the doctor presenting with Lyme symptoms who then test positive for Lyme, I don't know, may actually have Lyme and should be treated with at least the IDSA recommended antibiotic treatment. I don't know. Call me crazy.

Thank you, Rita, for posting all of these!

*Last portion of comment erased because, well, I don't know what I'm talking about. :?
Last edited by velvetmagnetta on Mon 25 May 2015 22:31, edited 1 time in total.

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Publish-Palooza!

Post by RitaA » Mon 25 May 2015 19:08

http://rel-risk.blogspot.com/2015/05/re ... stics.html

Sunday, May 24, 2015

Review: Diagnostics

From a series of review papers published in Infectious disease clinics of North America.
Marques AR. Laboratory Diagnosis of Lyme Disease: Advances and Challenges. Infect Dis Clin North Am. 2015 Jun;29(2):295-307.


[snip]

OTHER TESTS

The clinical usefulness of cell proliferation assays, Enzyme-Linked ImmunoSpot (ELISPOT) assays, cytokine measurements, complement split products, and lymphocyte transformation tests has not been established, and these tests should not be used for the diagnosis of Lyme disease.
Given what is stated above, I can't help but wonder if the following information found on the Infectolab website is untrue or simply misleading:

http://www.infectolab.com.au/Pages/LTT.aspx
Elispot®-LTT: FDA and CDC approved LTT technique in U.S.

In May 2011 the U.S. Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) have approved the Elispot®-LTT (T-Spot) technique beneath the QuantiFERON® TB Gold In-Tube test. Both tests represent Interferon-Gamma Release Assays (IGRAs) in form of Lymphocyte Transformation Tests (LTT). No other laboratory T-cell tests have been approved (ie: MELISA® or ITT® techniques) in the field of all Lymphocyte Transformation Tests (LTT) by the FDA/CDC yet. In the paper of the CDC regarding Interferon-Gamma Release Assays (IGRAs) from May 2011 the CDC says: "... A positive result suggests that an infection is likely, a negative result that an infection is unlikely...", and "...results can be available within 24 hours..."

The Elispot®-LTT is available for the following infections:

- Borrelia burgdorferi
- Chlamydia pneumoniae
- Chlamydia trachomatis
- Ehrlichia/Anaplasma
- Epstein-Barr-Virus
- Yersinia species
Then again, approving a technique may not mean quite the same thing as confirming the validity of a test.

TDP
Posts: 12
Joined: Fri 20 Mar 2015 16:55

Re: Publish-Palooza!

Post by TDP » Mon 25 May 2015 19:28

They are studiously avoiding the existence of B. myamotoi - this was detected in CDC-archived serum from patients with clinically diagnosed ["clinically suspect"] Lyme disease by Lee & colleagues in the US in 1022-2012; yet they mention other 'minor' species such as valaisiana & baveriensis.

This blows a huge hole in their diagnosis & testing regime as B. myamotoi does not cross-react with the burgdorferei group. I cannot overemphasise the importance of this. Medically it is crucial, since a significant proportion of patients will be denied treatment, with severe and potentially fatal consequences.

Although I am not a lawyer, if the IDSA returns basically the same set of BD guidelines after the current review, patient who are subsequently denied treament then later are found to have myamotoi might have a case for malpractice and/or professional negligence suits against the denying physician. Might make a change for medics following the IDSA guidelines to find themselves referred to licansing boards in the US & Canada :twisted:

If a sufficient number of myamotoi-infected patients are proven to have been denied treatment because of the IDSA guidelines, a class action suit could be brought against the IDSA committee itself. That might be the only way to get new set of guidelines based on science free from prejudice & conflicts of interest.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Publish-Palooza!

Post by duncan » Mon 25 May 2015 19:33

Perhaps someone needs to ask Marques why the clinical usefulness of those tests and assays has yet to be conclusively established, or at least, widely accepted. ;)

TDP
Posts: 12
Joined: Fri 20 Mar 2015 16:55

Re: Publish-Palooza!

Post by TDP » Mon 25 May 2015 19:38

duncan wrote:I hope everyone understands that this position means that late stage Lyme can be dismissed out of hand, if any kind of antibiotic treatment approximating IDSA guidelines has been rendered; technically, even if it hasn't, although that is less likely.

Someone - anyone - can contract Lyme, be symptomatic for Lyme, and even test positive for Lyme via the outrageous CDC 2Tier criteria, but still be refused a Lyme diagnosis.

Outrageous.
It's even worse here in the UK. Last week I had a discussion with the head of the infectious diseases dept. of one of Britain's top universities. He was sympathetic to the issues but told me that in the event that a patient has negative ELISA, prescribing panels will not allow doctors to order further tests - PCR, WB, skin biosies for microscopy/PCR etc - unless there is distinct evidence to support the diagnosis. If factors such as ESR and CRP are normal, permission will not be given.

Neither CRP nor ESR are diagnostic for borreliosis - elevated in some patients, normal in others.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Publish-Palooza!

Post by duncan » Mon 25 May 2015 20:58

Aargh, TDP, I feel your frustration and agree with you. It often appears to go beyond them merely ignoring common sense. It seems it can venture into just plain bad medicine territory.

Perhaps it is policies such as these that make some wonder about whether financial considerations (e.g., insurance concerns, or funding state health programs, etc.) might be displacing patient well-being as the main determinant in some treatment/diagnostic protocols.

Joanne60
Posts: 110
Joined: Mon 13 Feb 2012 15:49
Location: Guildford Surrey UK

Re: Publish-Palooza!

Post by Joanne60 » Tue 26 May 2015 9:30

TDP
At the Parliamentary meeting in House of Commons earlier this year Dr Tim Brooks 'expert' for Lyme at Porton Down said that a doctor can order an extended Lyme Panel so despite what ID doc said to you you could ask your GP to contact Porton to discuss getting this lyme panel done - the sample will probably still go to local lab for ELISA and be annotated to be sent on to Porton for this extended panel - there have been cases that have tested positive with Western Blot that were negative on ELISA but also some have come back positive for other tick borne diseases. This panel however does not include Bartonella or Babesia.
Sadly the BIA approach to Lyme Disease means that most ID docs in UK are the least approachable about Lyme especially once it becomes late or chronic stage most patients I am in touch with through Lyme Disease UK Facebook group seem to manage better with their GP who they see more frequently and thus can be seen how well they respond to a variety of treatments.

hv808ct
Posts: 256
Joined: Wed 30 Jul 2008 4:11

Re: Publish-Palooza!

Post by hv808ct » Tue 26 May 2015 15:31

Re: Publish-Palooza!
Post by velvetmagnetta » Mon 25 May 2015 7:33

From the Marques paper:

Many tests for Lyme disease are being performed in patients with low likelihood to have the disease, a situation in which a positive result is more likely to be a false-positive.

Whenever I see this statement, I have to wonder, well, how does anyone really know this?
It’s called ‘epidemiology’.

And statistics. See: http://www.dcscience.net/2014/03/10/on- ... screening/ for a quick lesson.
If people who have a low likelihood of testing positive are testing positive, then maybe our assumptions of who is likely to have the disease are wrong. Perhaps endemicity has now become meaningless,
If endemicity is meaningless maybe we should also screen for Lassa, malaria, Crimean-Congo, Japanese encephalitis, zika, and hundreds of other pathogens not “endemic” to the US. Imagine the cost and the work-up time for each patient, not to mention the absolute inability to even hazard a guess as to what might be wrong with a patient.
*Last portion of comment erased because, well, I don't know what I'm talking about.
A rare admission from Lymeland. Congrats. Saves me the trouble of citing Kruger and Dunning’s 1999 paper.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Publish-Palooza!

Post by duncan » Tue 26 May 2015 16:52

Ah. Epidemiology. So then, hv808ct, you are using "epidemiology" in much the same way as "math" describes the equation 5 x 5 = 30?

Also, re: endemicity - I think it fair to say, that most understood VM's reference to be Lyme specific. I think it is interesting, too, to see you quick to address cost; would that some researchers would be as quick to address the TBD patients' needs.

TDP
Posts: 12
Joined: Fri 20 Mar 2015 16:55

Re: Publish-Palooza!

Post by TDP » Tue 26 May 2015 19:37

Joanne60 wrote:TDP
At the Parliamentary meeting in House of Commons earlier this year Dr Tim Brooks 'expert' for Lyme at Porton Down said that a doctor can order an extended Lyme Panel so despite what ID doc said to you you could ask your GP to contact Porton to discuss getting this lyme panel done - the sample will probably still go to local lab for ELISA and be annotated to be sent on to Porton for this extended panel - there have been cases that have tested positive with Western Blot that were negative on ELISA but also some have come back positive for other tick borne diseases. This panel however does not include Bartonella or Babesia.
Sadly the BIA approach to Lyme Disease means that most ID docs in UK are the least approachable about Lyme especially once it becomes late or chronic stage most patients I am in touch with through Lyme Disease UK Facebook group seem to manage better with their GP who they see more frequently and thus can be seen how well they respond to a variety of treatments.
Unfortunately - at least in my area - even routine prescriptions have to go through the precribing committee for approval, as I found out in April last year. I have an allergy to an unidentified fungus; in spring & autumn as well as other time when the temp. is ~15 - 20 deg C. and it is damp I get severe rhinoconjunctivitis & cough. Des-loratidine is the only anti-hisstamine that works fairly well with no side-effetcs. last year they stopped prescribing it and substituted loratidine (not as effective & after 2-3 days I develop a bad headache). Because des-Loratidine iis more expensive it is "red flagged"; took my GP nearly 3 months of arguing before the orginal prescription was approved.

RIPL is not a free service, each PCR test is over GBP 150 IIRC (there's a price list downloadable from their website). I discussed testing with my GP and he has no doubt that the prescribing committee would not approve it.

Catch 22, as always, once you have a negative ELISA result. PHA/HPE/NHS ignore all the evidence on test failure, seronegativity, strain differences, and the existence of at least one spp. that no current ELISA can detect. Their policy is neither evidence based and nor scientifically justified.

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