British billionaire's family stricken

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: British billionaire's family stricken

Post by Henry » Fri 18 Dec 2015 19:15

What planet are you from, Duncan? Get real. You sound like the cancer patient who, when being offered an opportunity to participate in a trial in which the drug under investigation has a 97% cure rate, refuses to participate because it is doesn't work 3% of the time. Although a 97% cure rate may not be strictly "invariable", it's pretty damned good, I would say. At least it ought to influence a physician's decision to some extent, don't you think? Consider the alternative.

You keep forgetting that, when the term "invariable" was used, the qualifiers included laboratory error -- that includes things like experimental error which could be 5-10% depending on the test -- and immunodeficiency.

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: British billionaire's family stricken

Post by Lorima » Fri 18 Dec 2015 20:00

I suspect Henry and his team are trying to render us speechless with astonishment at their incompetence. That phrase "if you can't dazzle them with brilliance, baffle them with b....... " comes to mind.

I'll go ahead and post the rest of my critique of Henry's comment to me, next.
"I have to understand the world, you see."
Richard Feynman

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

Re: British billionaire's family stricken

Post by duncan » Fri 18 Dec 2015 20:03

I'm from the vantage of the patient, Henry.

One of the minority who don't improve with IDSA-recommended therapy. That's one of the 300,000 stricken per year. but if you parse down into IDSA estimates, and don't round off or generalize, that's close to 60,000 per year, year after year, who remain sick with Lyme.

Perspective seems to change math, and it shouldn't.

Lorima, sorry, we were posting at the same time. :)

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: British billionaire's family stricken

Post by Martian » Sun 20 Dec 2015 15:58

Source: https://www.facebook.com/johndcaudwell/ ... 2492441734
John Caudwell
4 hours ago


# LYME TESTING

Many of you tell the same story:

● Many years of clinical symptoms.
● Constant misdiagnosis by GPs
● Constant visits to consultants with
Continual misdiagnosis
● If you are lucky, you eventually get a
Lyme test but it shows negative
(some of you even have several)
● You get tested at Armin labs in
Germany and as expected because of
your symptoms you test positive
● You take the results to the doctor and
he refuses to accept them
(Not approved)
● Yet again you feel hopelessly
distressed!
● If you are lucky enough or wealthy
enough to get treated properly you get
better.

I call upon PHE to examine the difference between UK tests and Armin to discover the most reliable test.

From my knowledge and experience this will Prove the Armin method and at last people will have a reliable test accepted by our doctors!

EITHER WAY I WANT ANSWERS!! AND I WILL MAKE SURE I GET THEM EVEN IF I HAVE TO DO THE RESEARCH MYSELF!

THE DAYS OF IGNORANCE NEGLECT FOR CHRONIC LYME SUFFERERS MUST AND WILL COME TO AN END!

I CAN'T RATIFY ARMIN LABS BUT I CAN SAY THE RESULTS AND THE SYMPTOMS MATCH IN ALL OF THE PATIENTS THAT I HAVE SEEN SO WITHOUT CONTRARY EVIDENCE I BELIEVE THEM TO BE BEST IN CLASS

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: British billionaire's family stricken

Post by Lorima » Sun 20 Dec 2015 23:10

http://www.arminlabs.com/en/services/ti ... orreliosis

Looks reasonable to me.
I don't know the stats on the association of low natural killer cell count (CD57+) with late-stage LD, or whether the count really increases when treatment-mediated or spontaneous remission occurs. I do have, anecdotally, one family patient who matched that pattern. But I also have one (less disabled) who had normal NK activity but Bb-specific antibodies, in very late-stage. See the last two sentences of this post, for why this question is hard to research.

I'm sure the western blots with all bands reported, and the PCR offerings, are useful. If it's as hard to get those tests in European mainstream labs as it is in the US (and I suspect it is) Armin is providing an incredibly valuable service.

I seem to recall his being demonized for some of his views (herbal remedies, maybe - herbs are pretty big in Germany. Or maybe it's just that he will clinically diagnose late LD). I've developed a tolerance to non-harmful alt-med, as I've researched and discovered how much of mainstream medicine is a borderline scam. Why hold Armin to higher standards than so many mainstream doctors peddling, say, statins and PSA tests to the healthy? But as I recall, you hate CAM with a passion, Martian. There's no accounting for the things we tolerate and those we find outrageous, except by anthropological speculation. ;)

I haven't looked into the Eli-spot in detail. Certainly it would be useful to measure anti-Bb cellular immunity
(See
http://medical-dictionary.thefreedictio ... r+immunity )
as well as antibody-medicated immunity (= ELISA and western blot).
Steere published at least one early paper about it that I recall, before the policy of denial went into effect. I'll look...
http://www.ncbi.nlm.nih.gov/m/pubmed/?t ... yme+t-cell
Wow, there is a lot of Steere basic research on it, and very recently. Though nothing clinically useful for today's patients.

Here is a relevant early paper from Steere (and Dressler, infamous as the first author on the unfortunate original IgG western blot 5 band scheme.)
The T-cell proliferative assay in the diagnosis of Lyme disease.
Dressler F, et al. Ann Intern Med. 1991.
Authors
Dressler F1, Yoshinari NH, Steere AC.
Author information
1Tufts University School of Medicine, New England Medical Center, Boston, Massachusetts.
Citation
Ann Intern Med. 1991 Oct 1;115(7):533-9.
Abstract
OBJECTIVE: To determine the sensitivity and specificity of the T-cell proliferative assay as a diagnostic test in Lyme disease.

DESIGN: Cross-sectional study of patients with Lyme arthritis or chronic neuroborreliosis who had a history of erythema migrans, positive antibody responses to Borrelia burgdorferi by enzyme-linked immunosorbent assay (ELISA), or both; patients with other diseases; and healthy subjects.

SETTING: Diagnostic Lyme disease clinic in a university hospital.

PATIENTS: Forty-two of the 67 patients with active Lyme arthritis or chronic neuroborreliosis who were seen during the study period; 16 patients with inactive late Lyme disease; 77 patients with other rheumatologic or neurologic diseases; 9 workers from the Borrelia laboratory; and 9 healthy subjects.

MEASUREMENTS AND MAIN RESULTS: Nineteen of 42 patients with Lyme arthritis or chronic neuroborreliosis and 4 of 77 patients with other diseases had positive T-cell proliferative responses to B. burgdorferi antigens. The sensitivity of the proliferative assay was 45% (95% Cl, 30% to 60%) and the specificity was 95% (95% Cl, 87% to 99%). Twelve of 27 patients with active Lyme arthritis, 7 of 15 patients with chronic neuroborreliosis, 4 of 16 patients with inactive Lyme disease, 4 of 9 healthy Borrelia laboratory workers, and 0 of 9 healthy subjects had positive responses. Three of five patients with Lyme disease who had negative or indeterminant antibody responses by ELISA had positive T-cell proliferative responses.

CONCLUSION: The T-cell proliferative assay may be a helpful diagnostic test in the small subset of patients with late Lyme disease who have negative or indeterminant antibody responses by ELISA.

PMID 1883122 [PubMed - indexed for MEDLINE]
Full text
Full text at journal site
Comment in
Ann Intern Med. 1992 Apr 1;116(7):603.
If we didn't know the LD establishment has been trying to prevent rather than facilitate diagnosis since the early 1990s, it would seem very odd that the LD establishment hasn't made any effort to develop an assay kit for Bb-specific T-cells. I suppose it goes along with the false claim that all legitimate late-stage LD patients are positive by 2T, which would mean that no new diagnostics are needed for that condition, except to make it cheaper.

The other question is how well Eli-spot really works, to assess these T-cells. As with the 2T test, the devil would be in the details, not in the basic concept, both of which sound reasonable, even necessary, on the surface. That would take a few days to research. Of course almost everything in PubMed is suspect, because it has been through the dogma filter. That's why it will take much longer than it should to check it out.
Last edited by Lorima on Mon 21 Dec 2015 12:30, edited 1 time in total.
"I have to understand the world, you see."
Richard Feynman

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: British billionaire's family stricken

Post by Martian » Sun 20 Dec 2015 23:28

I'm sorry Armin looks reasonable to you.

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: British billionaire's family stricken

Post by Lorima » Mon 21 Dec 2015 4:01

I doubt I approve of everything about Armin; I haven't looked at everything.
I can't think of anyone I think is perfect; in fact I guess I don't believe there is one perfect ideal of a person. There are always trade-off that have to be made, between incompatible virtues.
As my husband once remarked, you don't have to like everything about a person to appreciate them.
But I like Armin's test offerings, at first view.

Do you dislike Igenex also? I appreciate them quite a bit - I even send them, instead of Stony Brook, my family's LD lab business. They've really stuck out their necks for LD patients. (And I hope they've made enough profit to stay in business.)
Where else than Armin,in Europe, is it easy to order PCR and Western blots with all bands reported? Or don't you see why someone might want these tests done, after a negative ELISA, or failed IDSA treatment?

Or don't you agree that IDSA is wrong, and has spread their mistakes through Europe, so that LD patients can't rely on mainstream doctors there?
"I have to understand the world, you see."
Richard Feynman

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: British billionaire's family stricken

Post by dlf » Mon 21 Dec 2015 4:08

Martian,

I have no presumptions about Armin. What do you find particularly objectionable about him and/or his lab?

I do have some issues with regard to the use of the CD57 test after having seen two ILADS videos in the not too distant past that suggested that this was not a particularly useful test. Unfortunately, I do not have access to them any longer, however they are mentioned by Dr. Marty Ross in this video.

CD-57 Test? Rarely. A Lyme Byte.
Treat Lyme and Associated Diseases by M Ross MD & T Brooke ND

https://www.youtube.com/watch?v=tdF6zjxNxMk

I also recalled a blog post by Dr. Jaller from back in 2009.

http://lymemd.blogspot.ca/2009/01/cd57.html
CD57 responses involve the same pro-inflammatory cytokines as seen in Th1 helper T cell responses.

If CD57 responses are low, it may mean that these cells are being consumed by the immune system in the fight against Lyme. If they are high, it may mean that the body is busy cranking out the T cells to assist in the fight against Lyme.

There is little published regarding the clinical usefulness of this test. Dr. Stricker has reported that this measurement "May" be helpful in assessing the degree of illness seen in chronic Lyme patients.

So I have been ordering this test for years. Thousands. Unfortunately, I am left with the conclusion that it has been of very little help to my patients. I have seen no correlation between CD57 and disease activity. Patients in clinical remission may have very low levels and patients with end stage tertiary Lyme disease may have very high levels. Individual immune responses are difficult to predict. Dr. Burrascano has suggested that the CD57 test might be an inexpensive way to screen for Lyme disease. I do not agree. Physicians may order CD57 levels because they are looking for evidence to support the diagnosis. I do not think this approach will not hold up to careful scrutiny. Many patients unfortunately are getting the awful 13 band test performed at "mill labs." Patients don't want to spend the money to get a decent Lyme test. I do throw out a wide net looking for a variety of markers associated with Lyme disease. I could argue that the vitamin D reversal pattern, a possible marker of the Th1 response, is a much better screen for patients with Lyme disease and other chronic intracellular infections.

I have seen recent published statements claiming that it is not known how CD57 and Lyme are associated. My research shows otherwise. (If you could follow any of what I said about it). However, in my opinion and experience, this marker has not been clinically useful.
The LLMD I see no longer uses CD57 testing at all, and hasn't for a number of years. Several others I have heard about don't use it either.

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