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El GcMAF está curando a pacientes con SFC!!!!

Publicado: 26 Nov 2010, 19:08
por EndSFC
Bueno, aquí viene un poquito de esperanza. Ya os he hablado antes del GcMAF. Es la terapia por la que voy a decantarme para el XMRV, aunque por genética no está claro que me funcione.

Lo de abajo es un mensaje de un paciente que fue a ver al Dr. De Meirleir el otro día, y éste le explicó que muchos de los que tienen una genética apropiada para el tratamiento, se están recuperando completamente.

Lo negativo es que por ahora, si no tienes la suerte de tener una buena genética (me refiero a los polimorfismos del gen VDR, receptor de la vitamina D), entonces no te queda otra opción que antiretrovirales, por el momento...:
Fuente:
http://www.forums.aboutmecfs.org/showth ... post139475" onclick="window.open(this.href);return false;

A few people asked me to update them after my KDM visit so i sent them all a PM with the following:

Just had my appointment with De Meirleir. Unfortunately my VDR Genotyping result means i'm not a good contendere for GcMAF. He said he would try me on it anyway for 8 weeks to see if it works as even some patients that didnt match up well for it after VDR Genotyping are doing well on it. He did say however that he is having very good success with patients it is ideal for with full recoveries after 20 weeks in alot of cases. Luckily i can do the GcMAF injections with my doctor in Ireland once a week. It has to be kept frozen though so i dont know about transporting it to the US. I also have to take daily Nexavir injections with it (i took this before, its an antiviral) and Artesunate. If after 8 weeks its not doing anything for me he will put me on Anti Retrovirals. He said its best to try the GcMAF first as it is the least toxic option. He hasnt started using retrovirials but will be very soon on the patients that dont respond well to GcMAF. He mentioned that 3 retrovirals had shown to work against XMRV in vitro... AZT, Tenofovir and one other but i dont know the name. He said you have to take 2 together in case you become resistant to one of them. He said i would not have to take the AZT one as it has the worst side effects. He said with GcMAF that there are very few side effects... only about 20% of patients have any side effects at all. The other patients have no side effects and show a gradual improvement without any big dips with it.

He will also be using Ampligen but he doesnt know when he will be able to start with it... maybe 6 months. He also said it was not true that people who test negative by Serology will not do well on Ampligen. Also, i am being retested in a Swedish lab who are using a new Serology test. He said he thinks there are problems with the current one.

I'm disappointed about the VDR results but i'll give it 8 weeks anyway and see how i do. Not too keen on Retrovirals but i'll try them out if needed. The GcMAF was about €350 for the 8 weeks, the Naxavir is €150 every 10 days so is expensive! The Artesunate is fairly cheap if i remember correctly, maybe €25 a month or something like that.
I brought it home myself just in a plastic bag with and ice bag inside. They said it would be ok like this for the 5 hours i would be travelling but much more and it would be a problem. I didnt have any side effects from the injection. Have a bit of a headache since early this evening but i get headaches from time to time so dont know if it has anything to do with the GcMAF yet... probably not.

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 28 Nov 2010, 22:55
por yoentulugar
He encontrado la traducción de patente europea para el GcMAF y me ha llamado la atención que se presentó en 1996. Yo no la comprendo, pero os paso el link por si os sirve para algo.

http://www.espatentes.com/pdf/2252756_t3.pdf" onclick="window.open(this.href);return false;






Bienvenido Sergio =)

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 29 Nov 2010, 10:22
por Richard Karpinski
If GcMAF doesn't work to activate your own macrophages, it is still possible to use apheresis to get white blood cells from a young healthy donor whose macrophages are activated by GcMAF. You would need to get a donor with the same blood type and a different HLA type to assure that you avoid the GVHD, Graft Versus Host Disease, which could result from infusing the white blood cells perhaps including some stem cells. GVHD is serious and best avoided carefully.

A clinical trial supported by LEF.org is being conducted in the South Florida Bone Marrow and Stem Cell Transplant Institute using the Leukocyte InFusion Therapy, LIFT, invented by Dr. Zheng Cui of Wake Forest Baptist Medical Center to cure cancer. It is taking advantage of the cancer killing activity of white blood cells seen in 10-15% of humans in the summer. Otherwise apheresis is just used to treat bacterial infections which persist despite use of antibiotics.

Such a complex procedure must be considered experimental at this time, I presume.

Nitpicker http://CureCancerNow.WetPaint.com" onclick="window.open(this.href);return false;

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 30 Nov 2010, 01:36
por EndSFC
Hi Richard,

Thanks so much for your message!!! ¿Hablas español?

It's very encouraging this method, as it actually bypasses the problem of GcMAF not working on certain people with polymorphisms at the VDR gene...I am going to propose it to Dr. De Meirleir if GcMAF doesn't work on me...

Es muy esperanzador este método, pues realmente describe cómo compensar el hecho de que el GcMAF no funcione en aquellos con polimosfirmos en el gen VDR...Se lo plantearé al Dr. KDM si el GcMAF no me funciona...

Gracias y bienvenido al foro,
Sergio

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 30 Nov 2010, 01:43
por EndSFC
Hi again Richard,

I thought you had copied your message from the Internet, but it seems you didn't...So, have you written this yourself? I mean, have you reached this conclusion? do you have any clinical experience with GcMAF or other immune therapies?

Thanks in advance for your reply,
Sergio

(Pensé que habías copiado el mensaje de Internet, pero parece que no. ¿Lo has escrito tú? Me refiero a si ésta es una conclusión tuya. ¿Tienes experiencia clínica con el GcMAF u otras terapias inmunes?)

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 30 Nov 2010, 05:21
por Richard Karpinski
I am not a doctor, but I study fairly carefully. I tried to find funding for Cui's authorized clinical trial, but eventually, after it moved to the South Florida institute, LEF.org put up $800,000 to carry it out. Results are expected in 2012.

But you may not need to wait so long. The aperesis process has long been used to cure infections that antibiotics cannot cure. This merely uses more carefully selected or activated donors. You can find four clinical trials conducted by Yamamoto in peer reviewed journals. When I saw that some non Japanese patients did not respond to GcMAF, I invented the two step procedure myself. As a computer guy, I learned to think up such things long ago.

I speak twenty or thirty computer languages, but only English among the natural languages. I can manage a single sentence in Russian and probably seven or eight in Espanol, though I don't know how to get the right letter in place of the wrong n in that word.

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 01 Dic 2010, 02:53
por EndSFC

***Hi Richard, thanks for your reply! Let me ask you a few other things:

(Disculpad chic@s, no me encuentro muy bien para traducir. Ya traduciré lo importante si avanzamos en esta conversación tan interesante)


I am not a doctor, but I study fairly carefully. I tried to find funding for Cui's authorized clinical trial, but eventually, after it moved to the South Florida institute, LEF.org put up $800,000 to carry it out. Results are expected in 2012.

***Good! This sound pretty encouraging and very interesting!

***So, as far as I understand from your message, Dr. Cui is carrying out a trial using Leukocyte InFusion Therapy for cancer, right? But, are they using GcMAF? If not, are they finding similar results?


But you may not need to wait so long. The aperesis process has long been used to cure infections that antibiotics cannot cure. This merely uses more carefully selected or activated donors. You can find four clinical trials conducted by Yamamoto in peer reviewed journals.

***Would you mind to give us the references of Prof. Yamamoto papers? Are you saying then that he is using already aphaeresis for GcMAF-non-responder patients? Wow, if so, this is GREAT news!!! I’d really appreciate if you could give me some reference on this…I am seeing Prof De Meirleir at the end of January, and although I am clinging my hopes to GcMAF, I believe my VDR status is not very good (as for the Dr. Yasko’s genetic test results).

When I saw that some non Japanese patients did not respond to GcMAF, I invented the two step procedure myself. As a computer guy, I learned to think up such things long ago.

***please pardon my ignorance here…You invented? Do you mean you patented this approach? Has it been used already? Are you in touch with Yamamoto or Ruggieri? Are they using this technique?

I speak twenty or thirty computer languages, but only English among the natural languages. I can manage a single sentence in Russian and probably seven or eight in Espanol, though I don't know how to get the right letter in place of the wrong n in that word.

***I don’t know if you are kidding here meaning you use google translator, or rather you actually manage in so many languages when it comes to computers vocabulary…If the later, that’s quite impressive!! ;-)

Looking forward to hear from you, and please pardon my english!!
Best,
Sergio

PS.- Here is a way to write the missing letter you were looking for:

Press "ALT key" and then press "164"...and voilà: "ñ" ;-)

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 01 Dic 2010, 09:25
por Richard Karpinski
>So, as far as I understand from your message, Dr. Cui is carrying out a trial using Leukocyte
>InFusion Therapy for cancer, right? But, are they using GcMAF? If not, are they finding similar
>results?

Sorry. I was not clear enough. Dr. Cui is not involved with the current clinical trial, but it is his LIFT procedure that is being used. No GcMAF, but just test the white blood cells of donors for cancer killing activity before infusing them into patients. (Match blood type and mismatch HLA type to avoid Graft Versus Host Disease.)

Since the cancer killing activity only occurs naturally in the summer, I suggest using GcMAF to make it work all year, but no one has done that as far as I know. I have heard nothing about any results from South Florida. Indeed it may be 24 months or longer before I hear anything from that trial. I would prefer to hear what happens week by week, but nobody is willing to work that way.

>>But you may not need to wait so long. The apheresis process has long been used to cure
>>infections that antibiotics cannot cure. This merely uses more carefully selected or activated
>>donors. You can find four clinical trials conducted by Yamamoto in peer reviewed journals.

>Would you mind to give us the references of Prof. Yamamoto papers? Are you saying then that he
>is using already aphaeresis for GcMAF-non-responder patients? Wow, if so, this is GREAT news!!!
>I’d really appreciate if you could give me some reference on this…I am seeing Prof De Meirleir at
>the end of January, and although I am clinging my hopes to GcMAF, I believe my VDR status is not
>very good (as for the Dr. Yasko’s genetic test results).

Here is one page listing several of Dr. Yamamoto's papers:
http://www.thedcasite.com/Yamamoto_file/Yamamoto.html" onclick="window.open(this.href);return false;

Nobody is using both GcMAF and apheresis that I know of. All of Yamamoto's patients responded to GcMAF. Perhaps he simply did not report on any non-responders. I only know of any non-responders because of things I read on the http://GcMAF.eu" onclick="window.open(this.href);return false; site. That's when I thought of using both procedures to avoid working only in the summer and to get treatment to GcMAF non-responders. Combining them is so obvious that I think a patent would be silly. In any case, I'm not trying to get rich, only to cure cancer and other diseases for more people.

Google is your friend. Look up GcMAF and VDBP-maf and dbpMAF and so forth. There are many spellings in use now. I have Google Alerts on these terms which is how I found your message in the first place.

>>When I saw that some non Japanese patients did not respond to GcMAF, I invented the two step
>>procedure myself. As a computer guy, I learned to think up such things long ago.

>please pardon my ignorance here…You invented? Do you mean you patented this approach? Has
>it been used already? Are you in touch with Yamamoto or Ruggieri? Are they using this technique?

I have spoken briefly with Dr. Yamamoto but he won't likely remember me. I only listened to Dr. Ruggieri at a conference last year. Neither has ever considered using this technique as far as I know.

>>I speak twenty or thirty computer languages, but only English among the natural languages. I
>>can manage a single sentence in Russian and probably seven or eight in Espanol, though I don't
>>know how to get the right letter in place of the wrong n in that word.

>I don’t know if you are kidding here meaning you use google translator, or rather you actually
>manage in so many languages when it comes to computers vocabulary…If the later, that’s quite
>impressive!!

My grandmother taught Latin and Greek. I know PL/I and Pascal and FORTRAN and Perl and on and on, but I only speak and write English among the natural languages that people speak to each other.

>Looking forward to hear from you, and please pardon my english!!

Your English is easy to understand. My Spanish is awful and very very limited. "Tres tigres terribles." I can say, including rolling the rrs, but that is my limit.

Richard

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 07 Dic 2010, 21:51
por rey troyano
Hola sergio estas seguro que los que toman gcmaf se recuperan totalmente,como se puede contactar con gente que ya lo ha probado o donde se puede ver.Un saludo desde las islas.

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 08 Dic 2010, 01:24
por tormenta
aqui teneis un foro donde podeis seguir algo del tema del Gcmaff

http://forums.aboutmecfs.org/showthread ... -taking-it" onclick="window.open(this.href);return false;

aqui la podeis ver en español

http://www.microsofttranslator.com/bv.a ... hO_uy0gDbQ" onclick="window.open(this.href);return false;
darle a la paguina un tiempo para que carge la traduccion.
en la paguina 20 teneis la opinion de una persona que esta lleggando al final del tratamiento.

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 08 Dic 2010, 02:54
por EndSFC
Hola Rey troyano, (tu nick impone! ;) ),

El GcMAF en estos momentos es una incógnita. Para algunos que respondan bien, puede tener un potencial muy fuerte, de curación incluso, si el XMRV u otro virus es el responsable de la cronificación de la enfermedad.

Creo que nadie ha llegado a las 50 inyecciones en las que se estima podríamos mejorar o curarnos, y además este límite no se conoce todavía con certeza. Por otra parte, hay muchas incertidumbres que descubrir, como si los que mejoran, es porque disminuyen los títulos del XMRV, y viceversa.

Por otro lado, ya están trabajando en terapias para compensar los polimorfismos en el gen VDR, que determinan la respuesta al GcMAF.

Luego hay otras preguntas como qué más habrá que hacer cuando tratemos la infección por XMRV. Por ejemplo, de una vez retaurar el ciclo de metilación, desintoxicar, etc. Otras infecciones pueden necesitar tratamiento a posteriori, como el Lyme (ocurre con el VIH).

Ésta es una terapia completamente experimental, y por ello hay tantas incertidumbres, pero una cosa está clara, tiene muy buena pinta, y puede que su potencial sea muy muy alto para con el SFC y el cáncer (esto último ya lo ha demostrado).

Por el momento los resultados son mixtos y anecdóticos, así que yo voy con esperanzas a tratarme, pero siendo realista. El GcMAF ha demostrado erradicar el VIH en pacientes con una determinada genética en 18 semanas, sin anemia, y sin haber desarrollado SIDA. Esto es todo lo que se sabe oficialmente (que no es poco!), por lo que supone una gran esperanza. El tiempo dirá!

Saluditos,
Sergio

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 08 Dic 2010, 10:49
por tormenta
sergio, sabes algo del precio por inyeccion o del tratamiento completo?

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 08 Dic 2010, 19:53
por EndSFC
Pues lo sabré seguro el 24-25 de enero, que es cuando tengo consulta con el Prf. De Meirleir. Sé que cada inyección de GcMAG son unos 65€ (el original estaba en unos 800!)--se toma cada 5 días--, pero aparte habrá otros medicamentos de apoyo, que nos puedan salir gratis (antihistamínicos, por ejem) o que sean prohibitivos...Además como he comentado, si no respondes al GcMAF, otras opciones serían, o Ampligen, o antoretrovirales (ARVs). El primero es carísimo, y de difícil acceso. Los segundos, pues también cuestan "una pasta" pues serían prescritos "off-label".

Este doctor está probando otra cosas, como perfusiones de amantadina...No creo que sea muy caro.

Sergio

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 10 Dic 2010, 20:36
por rey troyano
Gracias por aclararme las dudas,ahora estoy probando unas hierbas que me han aconsejado pero cuando acabe voy a estudiar a fondo el el gcmaf y de paso mi ingles bajo.Por cierto no nos has dicho que idioma hablan por bruselas si entienden el español,por el momento mejorare mi ingles del colegio.Si todo va bien quiero provar el gcmaf cuentanos como te va .un saludo desde las islas.

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 10 Dic 2010, 20:53
por tormenta
Bueno sergio mi consulta es el dia 12 de enero creo que estan ya todos los resultados a falta del xmrv, me gustaria haberla cambiado al dia 24 y haber viajado con vosotros pero no puede ser, ademas ha mi padre le han dado los resultados hoy de la prostata y es maligno (cancer de prostata), se vendra conmigo a bruselas, haber que le dice de meirleir, tal vez le beneficie el tratamiento con gcmaf, de momento le dicen que es maligno pero no hay metastasis, le han puesto para operar el 20 de enero, el lunes por la mañana ire a ver a su medico para que me explique detenidamente los resultados de su biopsia.

me han adelantado algunos resultados mios trpc y cd14 muy bajos fuera de rango, estoy mosca pues los cd14 se suponen altos fuera de rango en la infeccion por xmrv.

Re: El GcMAF está curando a pacientes con SFC!!!!

Publicado: 11 Dic 2010, 00:43
por EndSFC
Hola Rey Troyano,

En Bruselas hablan Francés y Flamenco como primer idioma, pero se manejan muy bien en inglés, incluso la gente de a pie, salvo alguna excepción. El español lo encuentras como aquí el inglés, es decir, que también lo escuchas, pero no puedes contar con que la gente lo hablará, pues no lo exigen en trabajos, etc. (Que yo sepa De Meirleir habla Francés, Flamenco e Inglés...).

Hola Tormenta, ¿Cómo que tienes los resultados ya? ¿Ya habías sido tratado por el Prof. De Meirleir con antelación? De ser así, ¿nos puedes contar un poco?

Saludos,
Sergio