GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

[mojoey]

Hey Serg,

I really hope you're right. Obviously, since I am planning on investing a hell of a lot into this treatment (traveling now gives me heebie jeebies).

As for the stem cells, I do agree that likely we will need reconstituting treatment after gcmaf, although a KDM patient recently told me that Kenny thinks getting lymphocyte infusions is the more direct way to go.

Hi guys,

These are my optimistic comments of the day, as i am having a good one:

I feel in general better since i started GcMAF, as I have been reporting. I hope it is a big part of the solution, if an infection is really the monkey wrench on CFS pathogenesis.

What I still think is that the methylation block is the biochemical cause of CFS, and that we need to get rid of everything that prevents it from working properly, including XMRV, MLVs, Borrelia, Fungus, toxins, etc., in order to get cured.

I beliebe that at some point on GcMAF, we'll be able to improve methylation, and therefore to silence the MLVs, and probably other virus (E.G. Herpes viruses).

After this, we will probably need stem cells (well, those who can afford it! I could sell a kidney though, but it doesn't seem like a good idea if i want to get cured from CFS! ;-)

Let me throw out a question: Has anyone successfully restored the methylation cycle and his/her GSH levels, and is still sick?????

Saluditos,
Sergio

 

[Sushi]

As for the stem cells, I do agree that likely we will need reconstituting treatment after gcmaf, although a KDM patient recently told me that Kenny thinks getting lymphocyte infusions is the more direct way to go.

Hi Joey,

Any more more information about the role of lymphocyte infusions? Cost? Would he give them? Rationale?

The picture changes month by month.

Understand the heebie jeebies about traveling--lots of potential pitfalls there. I was surprised that I survived it as well as I did. I do think that GcMAF is giving me more stamina. I manage physical stresses better than before.

Sushi

 

[mojoey]

I haven't heard anything about him giving them or even thinking about giving them. The rationale is the same as stem cells, except targeting the rebooting of the immune system only.

 

[serg1942]

Thanks Joey, the lymphocytes infusions sound like a good idea...Not just because it could work, but because KDM is thinking in new therapies!

Hi Lisa, i would be very interested in reading the case of the patient you talk about (it would be the first I know off!). Borrelia lowers GSH, so It seems difficult to me to have normal levels of GSH ans still have an active Borrelia infection...

Do you have the link to the specific message. i would really appreciate it!

thanks in advance,
Un abrazo,
Sergio

 

[slayadragon]

Hi Lisa, i would be very interested in reading the case of the patient you talk about (it would be the first I know off!). Borrelia lowers GSH, so It seems difficult to me to have normal levels of GSH ans still have an active Borrelia infection...

Do you have the link to the specific message. i would really appreciate it!

thanks in advance,
Un abrazo,
Sergio

Here you go:

http://health.groups.yahoo.com/group/CFS_Yasko/message/17661

 

[ikke2001be]

Hi,

GcMaf is doing a lot more than just activate macrophages:

http://www.youtube.com/watch?v=y7BLpR214t0

Regards,

Me

 

[Overstressed]

Hi,

is anyone thinking of IL-7 as a complementary therapy ? It looks like IL-7 is not (yet) doing the trick with HIV, but as a complementary therapy, it might help us getting rid of some nasty bugs. Cytheris has been achieving pretty good results with IL-7, and they're already in Phase II in their clinical trials. Important to note is that they went pretty quickly from Phase I to II.

Getting enrolled in the clinical trials will be difficult, because XMRV is not proven to be the cause of disease(but I'm sure it is), but maybe we find alternative routes to obtain IL-7, like Gc-Maf ?

I've found a link on a German site, and they sell IL-7: http://www.homeda.de/HOMEDA_INTERLEUKIN-7_C30.3327.0.html

OS.

 

[slayadragon]

Hi Lisa,
I am not sure if the details I found support your assessment of macrophage activity or suggest greater activity.

It is my understanding that some cancers, HIV and possibly XMRV release an enzyme called nagalese that turns off the ability for our macrophages to activate. Treatment with GcMAF circumvents the nagalese affect and activates the macrophages.

Wikipedia appears to give a fairly good description of macrophage function.

http://en.wikipedia.org/wiki/Macrophage

The following excerpts jump out at me in relation to the questions you presented.

Macrophages function in both non-specific defense (innate immunity) as well as help initiate specific defense mechanisms (adaptive immunity) of vertebrate animals. Their role is to phagocytose (engulf and then digest) cellular debris and pathogens, either as stationary or as mobile cells. They also stimulate lymphocytes and other immune cells to respond to pathogens.

And

Macrophages are versatile cells that play many roles. As scavengers, they rid the body of worn-out cells and other debris. Along with dendritic cells, they are foremost among the cells that "present" antigen, a crucial role in initiating an immune response. As secretory cells, monocytes and macrophages are vital to the regulation of immune responses and the development of inflammation; they produce a wide array of powerful chemical substances (monokines) including enzymes, complement proteins, and regulatory factors such as interleukin-1. At the same time, they carry receptors for lymphokines that allow them to be "activated" into single-minded pursuit of microbes and tumour cells.

Macrophages appear to do much more than just the digestion of cellular debris and pathogens.

In regard to the inflammation question, macrophages play a role in the cleanup of necrotic cellular debris caused by chronic inflammation. So, while GcMAF activation may cause inflammation, it also plays a role in correcting damage caused by chronic inflammation.

It would appear to me that the macrophage plays a larger role in the immune response then just the garbage collector. (just my interpretation)

These details may be very basic and already known to most of you. Please correct statements and assumptions I may have incorrectly made.

Thanks.

Okay, this is really helpful.

I'm wondering what our problems resulting from our (apparent) macrophage inactivity are.

It is true (per Osler's Web) that at least some people with ME/CFS have some broken-up cells and other debris in our blood. Is that likely caused by the lack of macrophage activity in terms of "garbage collection"? Or is something else causing that?

Macrophages serve as sentries as well as "Pac Men." Some of the comments earlier on this thread (weren't some of them from de Meirleir?) made me think that the Pac Man function was what was impaired, but maybe there are other problems as well.

Is the theory that the macrophages are not doing their job, and that this is why the other components of the immune system are not working?

Is this related to the NKC's not working, for example? (I know that AIDS patients have the same problems with herpes family viruses that we do, and presumably that's related to NKC's being inactive. Are we saying here that it's downstream from this macrophage problem?)

I don't think that the macrophages recruit the NKC's though. I think those just work spontaneously, as part of the innate immune system.

So I'm still a little fuzzy on what happens after this treatment makes the macrophages become activated. How does this help us, specifically?

Thanks much for your help.

Best, Lisa

 

[mojoey]

Hey Lisa,

I'm not sure what the relationship between activated mac's and NKCs is either, but Cansado reported having her NK count normalize after having them be perennially low.

Of course, that happens on ampligen also, and we know that's hardly a cure, so surely the NKCs are a symptom of something else being impaired

 

[mojoey]

Hey OS,

Lisa sent me some info on why IL-7 may not be a good idea for CFS patients, but I'm not sure if I'm allowed to post it. Lisa?

Hi,

is anyone thinking of IL-7 as a complementary therapy ? It looks like IL-7 is not (yet) doing the trick with HIV, but as a complementary therapy, it might help us getting rid of some nasty bugs. Cytheris has been achieving pretty good results with IL-7, and they're already in Phase II in their clinical trials. Important to note is that they went pretty quickly from Phase I to II.

Getting enrolled in the clinical trials will be difficult, because XMRV is not proven to be the cause of disease(but I'm sure it is), but maybe we find alternative routes to obtain IL-7, like Gc-Maf ?

I've found a link on a German site, and they sell IL-7: http://www.homeda.de/HOMEDA_INTERLEUKIN-7_C30.3327.0.html

OS.

 

[Berthe]

Hi everyone,

I was looking for the spreadsheet with data of the guinea pigs now I have also become one. Last monday I started with half a dose of Gc Maf and I immediately felt more energetic. There were some significant cognitive improvements that lasted until yesterday evening. I'm not sure which of the two is important concerning the response to Gc Maf, but I'm FOK moderate responder and BSM high responder. I've experienced some minor headaches in the evening (not today) and an increase of the tingling sensation in hands and feet (less today as well). Tomorrow I will get my first IV magnesium in a local hospital and next wednesday my second half dose of Gc Maf.

I realise this medication will be no miracle drug, but being bedridden for 23 hours a day every improvement will be a relief. The cognitive improvement goes together with another state of mind. The state of mind that wants to bake a cake for my children :victory:

Lots of love,

Esther

http://www.onwilliglichaam.blogspot.com

 

[greg22]

Hey Lisa,

I'm not sure what the relationship between activated mac's and NKCs is either, but Cansado reported having her NK count normalize after having them be perennially low.

Of course, that happens on ampligen also, and we know that's hardly a cure, so surely the NKCs are a symptom of something else being impaired

There are many reasons for low NK cell count or activity in CFS:
A non exhaustive list:
-High Nitric Oxyde (NO)
-H2S
- Cleaved Rnase L damaging actin and therefore preventing antigen presentation by PBMC to NKC.
- STAT1 cleavage blocking NKC response to IFN alpha.
- Many Viruses and bacterias like borrelia for which NK cell are reservoires.
- Leaking LPS from the gut participating in TH1 - TH2 imbalance.
...

Macrophages probably stimulate activation and proliferation of NKC by releasing IFN alpha among over cytokines and playing their APC job.
There are one of the first links that are gonna initiate inate and adaptative immunity as well.
Ampligen on the other hand is a synthetic RNA sequence that is gonna simulate a fake viral attack, the cell among other things releases IFNs and apoptosis pathways
of infected cells are triggered. Moreover ampligen RNA sequence is long and prevents Rnase L fragmentation caused mainly by short RNA sequences.

 

[slayadragon]

Hey OS,

Lisa sent me some info on why IL-7 may not be a good idea for CFS patients, but I'm not sure if I'm allowed to post it. Lisa?

On Gerwyn's board, he stated that people with ME/CFS already have high IL-7, and that this is thought to be one of the mechanisms by which MLV's inhibit apoptosis. Then he pointed out the following article.

2000 Jul 1;96(1):297-306
Inhibition of in vitro spontaneous apoptosis by IL-7 correlates with
bcl-2 up-regulation, cortical/mature immunophenotype, and better early
cytoreduction of childhood T-cell acute lymphoblastic leukemia.[/
size]Karawajew L, Ruppert V, Wuchter C, Ksser A, Schrappe M, Drken
B, Ludwig WD.
Department of Hematology, Oncology, and Tumor Immunology, Robert-
Rssle Clinic, Charit, Humboldt University of Berlin, Berlin,
Germany. karawa...@rrkberlin.de

Abstract
In normal T-cell development, IL-7 plays a nonredundant role as an
antiapoptic factor by regulating Bcl-2 expression in pro-T cells. In
the current study, we addressed the roles of IL-7 and related
cytokines as apoptosis-modulating factors in precursor T-cell acute
lymphoblastic leukemia (T-ALL). To this end, leukemic blasts from
pediatric patients with T-ALL were prospectively investigated as to
their responsiveness to IL-7, IL-4, and IL-2 (in terms of modulation
of spontaneous apoptosis, assessed by flow cytometry), cytokine
receptor expression profiles, and expression levels of Bcl-2 and Bax
proteins. IL-7, in contrast to IL-4 and IL-2, was highly efficient in
apoptosis inhibition, and this effect correlated with the expression
levels of IL-7Ralpha chain and with the up-regulation of Bcl-2 protein
expression (P <.0001). Subclassification of T-ALL samples (n = 130)
according to their in vitro IL-7 responses revealed that IL-7
refractory samples were more frequently positive for CD34 (P <.0001)
and the myeloid-associated antigen CD33 (P =.01), whereas IL-7
responsiveness was associated with an expression of more mature
differentiation-associated T-cell antigens (CD1a, surface CD3, CD4/8;
P <.05). Furthermore, the extent of apoptosis inhibition by IL-7 in
vitro quantitatively correlated with early cytoreduction as determined
by the prednisone peripheral blood response on day 8 and cytoreduction
in the marrow on day 15 (n = 87; P <.05). Multivariate analysis of the
apoptosis-related parameters investigated, including spontaneous
apoptosis, its inhibition by IL-7, and expression levels of Bcl-2 and
Bax, showed that only IL-7 responsiveness has an independent impact on
early cytoreduction (P <. 05), thus indicating a potential prognostic
relevance of IL-7 sensitivity in T-ALL.

 

[Sushi]

This research that Lisa published on IL 7, for me, just points to something I'd like to highlight: For those who are XMRV +, if you are going to consider actual treatment for the retrovirus, go to one of the few doctors who are in the research loop.

We know Judy has a lot of papers she hasn't been able to get published, KDM has told us that a lot is now known about the behavior of XMRV that has not yet been published and that he intends to publish very soon. The main researchers seem to be collaborating and sharing research.

For me this means that if you start treatment with a doctor who doesn't know the contents of the unpublished research, you could dig yourself into deeper trouble.

This is not HIV and it behaves differently. A few doctors are treating in light of the known research even though they can't yet tell their patients the full rationale behind their protocol. This may be unfortunate for patients, but the "etiquette" around academic publications has to be followed in order to get a study published in a reputable way. In other words, if they "leak" data ahead of time it screws with the ability to get it published.

In summary, if you are ready to try to treat this retrovirus, research your doctor well and find out if they are in the research loop.

Sushi

 

[Ronan]

I'm seeing De Meirleir again on Tuesday so i'll report back if anything new comes up! I'm on GcMAF 15 weeks now and the last few weeks i seem to have more energy than before. It's possible its just a random "good" spell or even the better diet and B12 injections but i have tried all those things before in isolation and didn't notice anything so hopefully this is the start of it kicking in for me.

 

[Berthe]

Thank you Sushi,

Dr. De Meirleir told me that XMRV is/behaves more like HTLV. Don't exactly know what he means by this, but I guess it concerns the replication and the fact that 7% of the population is positive and just a small percentage gets ill.

Love,
Esther

http://onwilliglichaam.blogspot.com

 

[Sushi]

Esther,

So nice to see you here and glad you had an initial good reaction. I think you will be in good hands. When all our test results come in and our protocol is individualized, the response should be even better---though slow!

KDM feels that the BSM allele is more important than the FOK--so this is good for you.

I see you are near Antwerp so you are one of the fortunate ones that is in closer range of the clinic.

Best wishes,
Sushi

 

[serg1942]

Hi guys,

Berthe and Ronan: CONGRATS!!! I am rooting for you from Spain! :victory:

LISA:

First, about macrophages and NKs, I read about it months agoI can't remember their relationship, but I am curious, so maybe I take my immunology book and read about it again, and Ill post it here. Anyway, Macrophages seem to actually be in the upstream of the Th1/Th2 and of the complement of immune system. They also participate in both the innate and adaptative immune response (they are essential for both), so they are VERY important.

THANKS for the link! Ive read the thread and Richs comments.

Unfortunately, this is not a case of having completely restored methylation cycle AND glutathione status. It is true that most of the values are higher, and that the methylation flux is much better (higher SAMe, and a bit higher ratio SAMe/SAH). However, the redox status is worse! The ratio GSH to GSSG (reduced to oxidized glutathione) has been reduced from 12.69 down to 9.75, and as far as I know, this indicates a worse redox status, that is the clue for a healthy cell, normal antioxidant/free radicals ratio, etc.

Also, if you pay attention to the folates, all of them are higher too, but all of them are in the lower limit of the normal rangeSo it seems that the folate cycle is better, but still far from be optimal.

My guess is that by improving the methylation capacity, he is synthesizing more GSH, and with this, and by improving the folate cycle, he is allowing the immune system to work better. However, it seems that the immune system is fighting something and/or detoxifying, because the extra GSH is being rapidly oxidized.

So, as Rich suggests, there must be some kind of pitfall that he is still dealing with that prevents GSH from raising and triggering the chain of events that are supposed to happen when the methylation cycle and the GSH status is optimal.

As Rich also points out, it seems that it is very difficult for our bodies to get rid of the stuff that lowers GSH and blocks the methylation cycle in the first place, so we will probably have to help the body with that

So, I still have the same question...Can a person have an optimal methylation cycle and GSH status and still suffer from CFS? I have still not seen anyone...

Saluditos,
Sergio

 

[Navid]

Thank You

just want to thank all the gc-maf pioneers for being so open in sharing their experiences with the rest of us. i truly appreciate the openness and thoroughness of the reports back.

one of the most frustrating things i have found since becoming ill is the lack of transparency; and the secrecy that often occurs around different treatments and doctors. so glad to see the opposite route being taken here with all of you and your gc-maf experiences.

gc-maf people are awesome......you guys rock:victory:...and based on kindness of spirit alone, deserve to get well (not that mean nasty ppl shouldn't get well too : )


warmly, navid

 

[garcia]

can someone post the link to the spreadsheet again? please?

https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0