Dr. Peterson (WPI), ttos. XMRV, Ampligen, GcMAF, ARVs

[EndSFC]

Hola a todos,

Estoy leyendo este estupendo reporte de un “compañero de fatigas” americano (Joey), que ha estado viendo al Dr. Peterson (ex-director médico del WPI, ahora “simplemente" médico, creo que todavía en el WPI), y creo que os gustará leer lo esencial de su conversación, pues no tiene desperdicio.

Hablan sobre posibles tratamientos para el XMRV, como el Ampligen, antiretrovirales o el GcMAF.

Para los que os manejáis con el inglés, os recomiendo leerlo entero, pues el escrito, además de tratar puntos fundamentales, está redactado con mucha "chispa":

-Mis comentarios están entre paréntesis-

Resalto en negrita lo más importante y lo traduzco de forma rápida (no literal):

Fuente: (http://www.forums.aboutmecfs.org/conten ... son-Update" onclick="window.open(this.href);return false;)


Just to backtrack a bit, I first saw Peterson in September of 2009. It was the same old story: what can I do to get these gutless NK cells back in gear? “Immune modulators, like Ampligen and gamma globulin”. That day, I tested for XMRV, and my positive results took the leading role for the next 11 months of treatment.When I saw Peterson again in October, no mention was made of immune modulators and the discussion instead took on the complexion of AIDS: how is it transmitted, if he were me, he’d plug himself in the first trial of AZT, etc.I then decided to see a doctor in Columbus whom had cured a ME/CFS patient and was evidently helping a few more.

When I first started seeing this doctor, I was worried that I was the only one that had tested positive for XMRV with any lab. After 8 months of Bechamp-based neural therapy with Sanum homeopathy, that is still the case, and my clinical markers have shown mixed results. My C4a is much better, dropping from 28000 to 800, but Slayadragon (Miss Mold Warrior) thought that the relocation in and of itself may have been the cause. The other ME/CFS patients that tested their C4a also showed normal or borderline normal numbers, so she may be right. My TGF-Beta 1 was slightly elevated, NK cell count and cytotoxicity were in the dumps, and neutrophils still shriveled like an insecure manhood. As Peterson said, if there were one test he would use to see where your CFS stands, it is the NK cell function.

Como el Dr. Peterson dijo, si hubiera que elegir un test para conocer en qué estado se encuentra “tu SFC”, este sería el de la función de las células NK.

10 months after my last visit to Peterson, I barely made the wretchted flight from Columbus to Reno and, that night, lamented how my previous crosscountry trip in January didn’t seem to resemble the deathly gallows nearly as much. My parents met me in Reno and on the way up to Tahoe in the middle of the night I had my earplugs in deep and my sunglasses on tight from the overstimulation and doubly lamented that I couldn’t even talk to my father after seeing him for the first time since he helped me move into my Columbus apartment in January. To make matters worse, I had sat next to someone with bronchitis on my 4 hour flight to Las Vegas and another fountain of mucous on my connecting flight to Reno.

30mg of Temezapam and 9 hours of sleep later, I woke up and got my list of questions ready for Peterson. I was excited to hear what had changed on the front lines of XMRV. Except I felt like I’d gotten the flu and could barely talk or sit up for that matter. I told my parents “I think I got sick” – those words always sound a bit unsure and confused coming out of a CFS patient. Incubation periods of 2 or 3 days? Try 12 hours for a CFS patient with no NK cell function. 2 water enemas later (true story), I at least felt like I could make it to Dr. P’s office.

When I saw Dr. P, he hustled into the office with the same boundless energy and “boy have we got lots to talk about” look I last saw in October. However, he seemed to have a different, calmer disposition this time after removing himself as Medical Director of WPI and focusing on practicing medicine. We talked a bit about testing: he said the LnCap culture is probably the best option we have now. Said the antibody test will be interesting because there has never been an infectious disease where an antibody response doesn’t occur.

Dijo que probablemente el mejor test disponible ahora (para el XMRV, claro) es el LnCap culture test (parecen ser un tipo de células utilizadas en el estudio del cáncer de próstata, pero no conozco el test que se deriva de ellas...). Dijo que el test de anticuerpos será (es, pues ya está disponible) interesante porque nunca ha habido una enfermedad infecciosa que no genere anticuerpos (es decir, que en teoría debería muy fiable este test, más que el PCR, que es genético).

As for transmission, his hypothesis is that it’s like other retroviruses: sexually transmitted and germ-line transmitted (generation-to-generation). I do not think he’s convinced yet that every true CFS patient has this retrovirus, but do keep in mind that Peterson isn’t the type to go out on a limb; he usually lets the science come to him. He claims to want nothing to do with the media hype surrounding the Alter/Lo paper, and as you’ll see, he has reason not to care much for clinical purposes. He knows it’s huge for politics.

We talked about the big elephant in the room: antiretroviral drugs. He seemed mixed on them, starting with caveats galore and saying “it took AIDS patients 3 years to really understand what’s going on,” and “no AIDS patients got better in 3 months ok?” Bottom line: he knows of at least 10 patients on ARVs and nobody is better yet. That doesn’t mean “don’t do them” but he definitely wouldn’t do ARVs until XMRV+ results have been replicated with another lab (a few confirmation studies are referenced in the last paragraph) and then results may take months to years to manifest.


Hablamos de lo importante: los antirretrovirales. Parecía tener opiniones contrapuestas al respecto; empezó por advertirme ampliamente sobre ellos, y siguió diciendo: “A los pacientes con SIDA les llevó tres años entender lo que les estaba ocurriendo, y ninguno mejoró en 3 meses, vale?” Corolario: Esto no significa “no lo hagas”, pero él, definitivamente no tomaría antirretrovirales hasta que los resultados del XMRV+ hayan sido replicados por otro laboratorio. (Notad que esta visita fue antes de la publicación del estudio de Alter)

He said true retrovirologists (and he) are thinking a combination of immune modulation and antiretroviral drugs will be necessary for XMRV+ patients.

Dijo que los verdaderos retrovirólogos (y él mismo), están pensando en una combinación de inmunomoduladores y antirretrovirales para tratar a los pacientes XMRV+.

He thinks there will be a joint trial of modulators with ARVs (ampligen+ARVs, IVIG+ARVs, etc) within 2 years.

I then, somewhat embarrassingly, broke out the news that I was considering going to Panama for stem cells.

Yo, vergonzosamente (pues ya sabía lo que el Dr. Peterson opinaba sobre las células madre antes de tratar el XMRV) decidí retractarme en cuanto a la terapia que ya había anunciado y considerado con células madre en Panamá.

I heard from another patient that he’s not sold on them and you get this impression he thinks it’s somewhat of a reckless move at this point in time, but I still wanted to hear it from him myself.

He said he knows of 3 patients that have gone: 1 got a lot better, 1 considerably worse, 1 didn’t budge.

Dijo que conoce 3 pacientes que han ido a Panamá (a seguir la terapia con células madre) y: 1 mejoró mucho, otro empeoró considerablente, y el tercero “se quedó igual”.

I asked if he knows their pre-stem cell XMRV status and he said he does not but would be very interested in finding out.

I voiced my angst about XMRV replication with new stem cells and he said “you’re right to be worried. Nothing replicates a retrovirus like stem cell division.”

Le trasnladé mi preocupación de que el XMRV puediera infectar las células madre, y me dijo que en efecto debía preocuparme por ello, pues nada replica mejor a un retrovirus que la división de una célula madre.

At this point, I really sank, but instead of reprimanding me for wanting to try everything under heaven, above hell, and little in between, Peterson reiterated what he told me last October: “Young men like you are risk-takers, always will be. If I had this disease at my age, I would have a completely different set of considerations than a 20-something. You’re losing the prime years of your life, but at the same time you also have many potentially good years ahead.” To this latter point, he was telling me that a 60-something patient might feel like he/she has nothing to lose and just take the ARVs, but the long-term damage to someone in my age group is more of a consideration.

En este punto, estaba francamente hundido, pero, (el Dr. Peterson) en lugar de “reprenderme” por querer probar todo lo posible bajo el cielo, sobre el infierno, y un poco entre ambos, el doctor Perterson me dijo lo mismo que en mi consulta anterior: “ Hombres jóvenes como tú (Joey tiene mi edad, unos 27) siempre suelen tomar riesgos y siempre lo harán. Si yo tuviera esta enfermedad a mi edad (está en la tercera edad, creo), los pros y contras a valorar son muy distintos que cuando tienes "veintitantos". Aunque estás perdiendo los principales años de tu vida, a la vez tienes muchos años por delante de los que disfrutar. En este punto me estaba viniendo a decir que a los "sesenta y algo" años no tienes mucho que perder, por lo que tomar ARV es una decisión más sencilla, pero que el daño a largo plazo de estos medicamentos en alguien de mi edad es algo a considerar más profundamente.

Again, this is just his opinion. Basically he rendered apoptosis to my last few working brain cells and left me utterfly confused. He ended our appointment by asking “Well, have you given up on Ampligen?”

Básicamente, le produjo apoptosis (muerte cellular) a las últimas neuronas que me quedaban, dejándome completamente confundido (jajaja!, tenía que traducir esto!).

Terminó nuestra visita preguntando: ¿Te has rendido en cuanto a probar el Ampligen?

Now we come full circle. The thing is, I probably would have started Ampligen last November if I’d never known my XMRV status. When Dr. P told me about AZT I couldn’t leave Incline Village fast enough: I was scared of both what I’d be admitting if I did take it (this is like HIV) and what effect the drug would have on me. Now he’s telling me to consider Ampligen anyway? I knew Incline Village had the flair for the dramatic but I could never have predicted this. I had much to discuss with my family. Condensed version:

we decided the 40% discount with the group discount on Panama stem cells was not worth the risk of XMRV replication. Ampligen would be worth considering as a bridge to whatever ends up being an effective treatment for XMRV. Will wait for more data before considering ARVs.

Con mi familia, decidí que el 40% de descuento que me procuraban al ir a Panamá en grupo, no merecía la pena dado el riesgo de infección de las células madre por el XMRV. Por su parte, el Ampligen sería algo a considerar como algo provisional hasta que aparezca algo efectivo para el XMRV. Por último, esperaremos hasta que haya más información para planterme los ARVs.

When I saw Dr. P again and relayed my decision to him, his face seemed to lighten as if I pried Sauron’s ring off his finger and left him free to come along on the trip just to shoot Orcs in a barrel or something. Yesterday he talked about it like he was guarding this juicy secret, but once it got out, he wasn't responsible for adding to its juiciness.

He said the thing with Ampligen is it’s really dramatic when it works, and it does work in about 70% of patients (and by work I mean improvement, not cure.) Said one woman who was about where I am on the disability scale took it for 2 weeks and felt almost normal. He said the upshot about the other 30% is that no one gets worse and refutes reports from patients saying they got worse because the clinical markers don't reflect that.

El Dr. Peterson me explicó que lo que ocurre con el Ampligen es que cuando funciona (en un 70% aprox) lo hace de forma realmente asombrosa –cuando digo “funciona”, me refiero a “mejora”, no a “cura”—Continuó diciéndome que el resultado del restante 30% de personas que no responden al Ampligen es que ninguno empeora, y que no cree lo que los pacientes refieren sobre empeorar con este tratamiento, pues no es lo que los estudios reflejan.

I have no way to know if he’s 100% right, but I think people may definitely feel worse from the inflammation. I thought maybe some felt worse because they could no longer tolerate the drug (i.e. Andrea Whittemore at one point), but he said it takes on the scale of 10 years for that to happen. It’s worth mentioning that Andrea did announce publicly she went back on the drug in November of 2009 so it wasn’t a permanently reaction for her, at least. There are plenty of stories floating around about experiences with Ampligen, and ultimately only I can judge their veracity, but there is no question in my mind that it is the most successful single drug ever used for CFS.

He said he and Dr. De Merleir have used Ampligen long enough to get pretty good at predicting success based on clinical markers and said “Yours are perfect for it.” “My biggest worry for you is walking around with no NK cell function and doing nothing about it.” – Talk about a hard sell.

Dijo que tanto él como el Dr. De Meirleir han utilizado Ampligen durante suficiente tiempo como para predecir de forma bastante acertada el posible éxito del Ampligen, basándose en las pruebas clínicas, y me dijo que yo era un perfecto candidato. Dijo “Mi principal preocupación en tu caso es que “vayas por ahí” sin células NK funcionales y que no hagas nada al respecto”.

Rrrr was insightful enough to ask: if ampligen works partially by inducing interferon, why not take gamma interferon itself? I asked Dr. P and he said because it makes patients very sick, and in fact, the ampligen dosage needs to be dialed down for some.

Ampligen is best described as going through limbo right now. Dr. Bateman has stopped doing the trial, so only Dr. P and Dr. Lapp are available. Patients need to do the infusions 2x/week, and commuting is highly discouraged, so it’s either move to Reno or Charlotte. There is a washout period of 6 weeks (stop taking all drugs that may possibly interfere) and anywhere from 2-4 weeks of processing. I know Hemispherx is presenting data from their retrospective analysis on XMRV in patient samples from their prior phase III clinical trial on Sept 7-8 at the NIH conference. Cort has heard reports that the drug works better on XMRV+ patients, but we’ll see how it plays out. If the data is positive I hope more doctors will participate in both the open-label cost-recovery trial (patients pay 18-20k/year) and double-blind clinical trials (free but might get placebo.)

I’m getting plugged into a few research trials: one with CAA/GSK (XMRV confirmation and possible subsequent therapeutic trial), one with Dr. Jay Levy at UCSF (XMRV confirmation study and possible viral array study). These are some of the reasons why Dr. Peterson’s not concerned with the Alter/Lo study, and I'm sure there are many more coming. Unfortunately I’ve heard both of these trials are only available through certain doctors. He said the Dr. Jose Montoya study is mostly epidemiological in nature and isn’t sure if they are looking to do any therapeutic trials down the line.

I had a long conversation with Dr. P and his research team about GcMaf, and this is something they are looking into. He isn’t doing anything with Peptide T nor has he heard of any Peptide T trials yet.


Además, tuve una larga conversación con el Dr. Peterson y su equipo sobre el GcMAF, siendo esta terapia algo que están valorando. Por otra parte, no está trabajando en nada relacionado con el péptido P terapia prometedora (creo, no la he estudiado) en el VIH).

[elipoarch]

Muy interesante.

Supongo que el análisis de células NK no lo deben hacer por la SS, no?

[EndSFC]

ummmm....déjame pensar.......ummmmmmmmm.., nope!!!!!

Además es bastante caro, son 500 $...Pero creo que merece la pena junto con el XMRV, o mejor dicho, merecerá la pena si doy positivo para el XMRV...

S.

[elipoarch]

A ver, que mire por los bolsillos... jo... estoy mal de "cash"... voy a ver si mi amiga Carmen Lomana me deja algo... es que no sé qué me pasa, que no me acostumbro a esto de ser pobre... debe ser mi pasado pijo, que se cierne sobre mí