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¡Test confirmatorio de mi enfermedad de Lyme!

Publicado: 05 Ago 2014, 05:14
por EndSFC
En cuanto pueda lo traduzco

A confirmatory test for my Lyme disease: Run Borrelia cause I'll beat you soon! ;)

Hi everybody,
As we know, the diagnosis of Lyme is really tricky, as tests are not reliable enough, and the treatment calls for a great commitment on a very hard treatment approach and almost a blind trust in your doctor, during years of mild improvement or even bad results.

Well, I suffer from ME/CFS, and, as many others, I tested positive for Borrelia B. by Infectolabs (Germany), using the Borrelia Elispot-LTT test (LymphocyteTransformationsTest). While most people with ME/CFS are testing positive through this laboratory, the reliability of this test remains unknown as of today. There is evidence showing that this kind of new test is highly specific and sensitive: (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/" onclick="window.open(this.href);return false;):
In order to raise the reliability of the test, in the study they had to use a 3 lysate antigens of the three relevant Borrelia species (B. sensu stricto, B. afzelii and B.garinii) and the recombinant OspC of B. afzelii (http://www.ncbi.nlm.nih.gov/pubmed/12358063" onclick="window.open(this.href);return false;):

(...)A Borrelia-LTT with one recombinant antigen and lysate antigens of the three relevant Borrelia species (B. sensu stricto, B. afzelii and B.garinii) was developed and tested."(...)"The lysate antigens of the three species of Borrelia and the recombinant OspC cross-reacted in the Borrelia-LTT. Therefore, it is not possible to determine the respective species involved.

With these antigens they got a fairly high accuracy: "The sensitivity of the Borrelia-LTT is 89.4% for clinically active borreliosis, with a specificity of 98,7%", Meaning that a positive will be real in an 89.4% of cases while a negative will be real in a 98,7% of the times.
Unfortunately the test run by Infectolabs doesn't use the same antigens, nor cannot be known whether they use the same procedures. In their website, they quote studies on the reliability of the LTT tests, but they don't show the materials and methods they actually use:

http://www.infectolab.de/index.php?id=51&L=1" onclick="window.open(this.href);return false;
Also, they state:

"(...)The test reflects the actual, current Borrelia burgdorferi activity of chronic and also acute Lyme infections. The Elispot-LTT is highly sensitive and can detect even one single Borrelia-reactive T-cell in the blood (...)"... " These tests are not done by Infectolab"
Making clear that they only use antigens from Borrelia Bourdogferi, and that any of the tests they quote have been done by them.
So, with the above facts, although I had tested positive, there was no way of knowing whether I actually have Lyme disease or not, being my uncertainty greater with the fact that I don't suffer the text-book-Lyme symptoms.
A BIG SURPRISE! : Today, after going through the test I took at IgeneX (USA) years ago in order to check what co-infections I was tested for, I realized that indeed, I AM POSITIVE following the CDC most strict criteria! How can this be possible if my Lyme Literate Doctor told me that the test was negative? Well, the IgM Western Blot they use, consists of analyzing the amount of certain proteins (immunoglobulins M against specific Borrelia antigens) in blood, seen as bands in an electroforesis gel.
The criteria of the laboratory is more broad for a positive result, requiring 2 proteins to be present out of the 14 looked for in the test, while the CDC also determines a results as positive when 2 proteins are present, but in this case, out of only 4 proteins. Well, I have one protein present and another "indeterminate". Meaning that the level of it was in the limit between negative and positive. So that's why strictly the result was negative, although IgeneX points out that only 1 positive protein, is clinically significant.

The trick???? Well, the 2 proteins I have present (1 in the limit) are 2 out of the 4 required by the CDC: the "39" and the "41" (being these two the more known and classically proteins linked to Borrelia).
Also, I suffer and suffered by the time I took the test, from hypogammaglobulinemia M and G, meaning that my lymphocytes B are not in "good shape" to synthesize enough immunoglobulins. Meaning that a positive IgM (high in acute infections, opposed to the IgGs) in a given chronic infection, is like catching a needle in a haystack!.
So, taking together these results, with the low CD57+ CD3-, together with high pro-inflammatory cytokines, with the own hypogammaglobulinemia M and G (non-specific sign of Lyme), and my symptoms, now I have no doubt that I do have Lyme disease, and therefore, I will continue the rough treatment with, at least, much more hope and scientific certainty :)

Hope this is helpful!
Sergio

Re: ¡Test confirmatorio de mi enfermedad de Lyme!

Publicado: 05 Ago 2014, 08:37
por lotto1
Lo que me sorprende, desde mi ignorancia, es el alto porcentaje de falsos positivos y falsos negativos. ¿te has hecho el test en dos sitios para confirmar?

Re: ¡Test confirmatorio de mi enfermedad de Lyme!

Publicado: 05 Ago 2014, 12:40
por EndSFC
Hola Lotto, he dormido muy poco pues me harté de cafeína por un trabajo que había de terminar, y no soy capaz ahora de traducir mi mensaje. Lo intentaré hacer luego, y espero satisfacer tu pregunta con mi relato,

Un abrazo,
Sergio

Re: ¡Test confirmatorio de mi enfermedad de Lyme!

Publicado: 05 Ago 2014, 17:27
por Isasa
Sergio, muchas gracias por la información que nos ofreces..

Espero, que sigas, contándonos, ¿ cuál es tu nuevo tratamiento? ¿ cómo te va?..¿ Cómo te vas encontrando ? Etc etc

Somos muchos, los que te seguimos y si encontrases otra vía, nos gustaría seguir sabiendo, por sí tuviésemos que cambiar a nuevos conceptos o nueva dirección de tratamiento..

Espero, que te vaya bien...

Cuídate

Un abrazo..