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

[Sushi]

Hi Alice,

Yes, it is good to test 1,25 as well as 25 before and during GcMAF treatment. Also, inflammatory cytokines give you a baseline to compare with. I had a great deal of testing--pretty complete immune panels, the best gut tests, viruses, Lyme, neurotoxicity, and more.

Inflammation feels different to different people. Some feel it in the brain, I feel it like the aches of a fever.

What dose do you plan to start with? (in nannograms) A lower dose is less likely to produce inflammation.

Hope you do well on it!

Sushi

 

[Jenny]

Hi Alice,


Inflammation feels different to different people. Some feel it in the brain, I feel it like the aches of a fever.

What dose do you plan to start with? (in nannograms) A lower dose is less likely to produce inflammation.

Hope you do well on it!

Sushi

Hi Sushi

I've wondered for a while what people mean when they say they have inflammation. When you say you have the aches of a fever, how do you know this is inflammation? My whole body aches permanently, and i have a lot of head, back and joint pain too. But I've taken just about every supplement (including Enhansa) as well as several meds to try to deal with this but none has any effect.

If this was inflammation I would think I should have at least some improvement.

Does anyone know what the evidence is that we do indeed have lots of inflammation (in the absence of high CRP in my case)?

Sorry to take this topic off thread!

Jenny

 

[Daffodil]

Hi Jenny. There are a lot of markers of inflammation....cytokines and chemokines are common ones....low vitamin D and high 1,25 vitamin D is also a sign....high D-dimer, etc etc. You could get the cytokine inflammatory profile at http://unevx.com/...or you can just get 1 or 2 cytokines tested at other labs. I think the most common one elevated in CFS is IL-8.....there is definitely LOTS of evidence of inflammation!

 

[Sushi]

Hi Sushi

I've wondered for a while what people mean when they say they have inflammation. When you say you have the aches of a fever, how do you know this is inflammation? My whole body aches permanently, and i have a lot of head, back and joint pain too. But I've taken just about every supplement (including Enhansa) as well as several meds to try to deal with this but none has any effect.

If this was inflammation I would think I should have at least some improvement.

Does anyone know what the evidence is that we do indeed have lots of inflammation (in the absence of high CRP in my case)?

Sorry to take this topic off thread!

Jenny

Yes, Jenny,

As Daff said, testing shows that it is inflammation. For me, particularly IL 8. But it is pretty common for us to have generalized inflammation with this disease. Another reason to test things before starting something that activates the immune system and is likely to increase inflammation.

Best wishes,
Sushi

 

[Jenny]

Thanks for your replies Daff and Sushi. I haven't had any of that testing done so don't know if I have those indicators of inflammation. I must say my symptoms feel like inflammation but given what some researchers say about brain hypersensitivity to pain in FM (which I have), I do wonder if assuming pain is inflammation may be misguided for some of us.

Jenny

 

[anniekim]

Sushi, everyone, if there is inflammation is the CRP test not used? And if not, do you know why? Many thanks

 

[Sushi]

Sushi, everyone, if there is inflammation is the CRP test not used? And if not, do you know why? Many thanks

It doesn't seem to be so useful for the type of inflammation that some of us get with GcMAF. Inflammatory cytokines seem to be a better test.

Best,
Sushi

 

[ukxmrv]

I think that one of the reasons pwme and CFS have not received a fair deal is that "inflammation" by doctors has only been accepted if the CRP test is positive. This isn't a test that will show the type of inflammation that patients get so for years I've been told that my CRP is normal and there is no sign of any inflammation.

What I don't know if if the term "inflammation" was being used in a too narrow sense by previous doctors or if some of the CFS and ME doctors are now using it in a new way to denote the specific immune activation we see instead.

KDM used the term IRIS to describe the reaction to one GCMAF patient I know. One page on IRIS that I looked at uses the term "inflammation" to describe the immune response that HIV/AIDS patients have to drug treatment. So the "new" use of the word inflammation may have started there. What is confusing is that the CRP test can be used to help dx IRIS in these patients.

If we were tested for CRP when going through the reaction to MAF (and I had an acute one to MAF314) would my CRP be positive for once?

Had a quick look at WIKI and they define inflammation to start off as

"(Latin, īnflammō, "I ignite, set alight") is part of the complex biological response of vascular tissues to harmful stimuli, such as pathogens, damaged cells, or irritants.[1] Inflammation is a protective attempt by the organism to remove the injurious stimuli and to initiate the healing process. Inflammation is not a synonym for infection, even in cases where inflammation is caused by infection. Although infection is caused by a microorganism, inflammation is one of the responses of the organism to the pathogen. However, inflammation is a stereotyped response, and therefore it is considered as a mechanism of innate immunity, as compared to adaptive immunity, which is specific for each pathogen"

 

[Forebearance]

It's really helpful to read Dr. Shoemaker's stuff on the immune system. Whether we have issues with being poisoned by something or not, people with ME have the process happening that he figured out. The innate immune system is going crazy trying to get the attention of the adaptive immune system. The way it sends out an alarm is to cause inflammation.

So it's like half of our immune system is on overdrive, and the other half is oblivious.

 

[Daffodil]

So it's been almost 2 weeks since I took my last GcMAF dose, which was 20 ng, up from 18 ng the week before.

The last 2 weeks have not been that good. My energy is still improved...but brain fog has been terrible again (which really ruins everything).

I will continue to take time off GcMAF, but now I remember that about a month ago, I stopped Tenofovir. I hope this brain downturn has nothing to do with that. I would think that if it had to do with stopping that ARV, it would have happened sooner...?

xoxox
S

 

[Daffodil]

woke up with even worse brain fog/inflammation! body felt OK. decided to take 15 ng...will see what happens.

 

[Tito]

Daffodil,
Sometimes the effect of a drug takes many days/weeks to appear. The symtoms you experience now might be the consequence of something taken a while ago. I know it does not bring any help but it is something I have noticed in my own case.
Good luck! ;-)

 

[Daffodil]

thanks, Tito. i still feel like doing things thanks to the GcMAF, but cannot actually do much when everything is so foggy like a black hole i am in!

some believe the fog is related to the gut but there is nothing new with my gut.

xoxoxox

 

[cigana]

Hello,
I got my KDM results. It says

FOK1 F/F
BSM1 B/b

and nagalase 2.8 (0.32-0.95)

Can you tell me if I am high or low responder to gc-MAF? I found conflicting reports online.
Thanks.

 

[Sushi]

Hi Cigana,

Yes, the reports online are conflicting--not really about the meaning of the tests, but whether they are right, as two different labs found different results on the same patients.

FOK FF is considered a good responder and BSM B/b is considered a moderate responder. BSM is thought by some to be more important. Other researchers don't think these polymorphisms have been clinically significant--still, nice to be considered a good responder!

Your nagalase at 2.8 is pretty high--which also, theoretically, should predict good response. How were your inflammatory cytokines--especially IL 8? And also your sCD 14?

Hope you do well,
Sushi

 

[cigana]

Hi Cigana,

Yes, the reports online are conflicting--not really about the meaning of the tests, but whether they are right, as two different labs found different results on the same patients.

FOK FF is considered a good responder and BSM B/b is considered a moderate responder. BSM is thought by some to be more important. Other researchers don't think these polymorphisms have been clinically significant--still, nice to be considered a good responder!

Your nagalase at 2.8 is pretty high--which also, theoretically, should predict good response. How were your inflammatory cytokines--especially IL 8? And also your sCD 14?

Hope you do well,
Sushi

Thanks Sushi! Then I wonder why KDM has not prescribed gc-MAF? Well I am also positive for Bartonella and Rickettsia by serology (and Borrelia B is in the "greyzone"). He has prescribed antibiotics azithromycin and doxycycline. Perhaps he wants to treat the zoonoses first.

My raised cytokines were: IL-8 = 2390.0 (0-15.0)
IL1-beta 7 (0-3)
MCP1 325 (0-165)
MIP-1beta 242 (0-155)

I never even heard of MCP and MIP.

My sCD14 is raised at 6777 (2800-5000), guess that means I have leaky gut. ( Interesting that my recent mannitol-lactulose test for leaky gut gave me a perfectly healthy result!).

 

[Daffodil]

hi cigana. i also keep testing negative for leaky gut but my sCD14 is high too for redlabs..although at the lab i had it done, they consider the value normal.

MIP is macrophage inflammatory protein.

i think they do like to treat bacterial infections before using GcMAF.

 

[Sushi]

Hi Cigana,

From what I have heard, it works better to try to treat Lyme infections first.

I sent you a PM.

Best,
Sushi

 

[ukxmrv]

Daffofil,

My time on the MAF314 was really up and down. There were good and bad days/weeks. It took time for the good effects to become consistant. Also it was not until I had stopped the yoghurt.

 

[Daffodil]

Hi Uk. Thanks for letting me know.

What I am experiencing now is not inflammation from the GcMAF....it is like a re-infection. I woke up today feeling very ill with lymph node aches, severe brain inflammation, slight sore throat and a sick feeling in my lungs.

I have no idea if this is a new infection or if I am just regressing, but it feels awful. My instinct tells me that something bad is going on with the CFS. It's frustrating because there is really no blood work I can order quickly that will tell me anything.

I have not left the house for days and am resting a lot. I haven't seen anyone who could have given me a new germ.

Wonder if the GcMAF has re-activated something.

xoxox