• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gcmaf working signs

naoise

Senior Member
Messages
287
Hi

I'm one month into taking Gcmaf (0.4 of a vial at the moment and will increase every month).
What I'm wondering is those who took or are taking gcmaf... When you saw signs of was working what were those signs? Also for anyone who finished the treatment are you better now and loving a normal life?

I'm starting to have more energy and better sleep but don't want to get my hopes up too soon.
 

naoise

Senior Member
Messages
287
@john66 sorry to hear that. They do say you can get much worse in the beginning so could that have been the case?
Yup until this week I was really bad and couldn't function at all. But I'm not getting my hopes up cause this happens with me..I go through phases of feeling good. So will see if this phase ends but I hope not.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
What I'm wondering is those who took or are taking gcmaf... When you saw signs of was working what were those signs?
I think this varies from person to person. For me it was an across the board "bettering" of symptoms--but it wasn't startling or by any means a cure, just that I felt better, had more stamina, etc.
Also for anyone who finished the treatment are you better now and loving a normal life?
For those with ME/CFS taking GcMAF, I don't think there is any "finishing the treatment." It seems to be an ongoing support but not something that "heals" ME/CFS.
 

GcMAF Australia

Senior Member
Messages
1,027
I am glad it is helping you. I tried the Maf 878 for a month and it made me worse than I have ever been.
@john66 sorry to hear that. They do say you can get much worse in the beginning so could that have been the case?
Yup until this week I was really bad and couldn't function at all. But I'm not getting my hopes up cause this happens with me..I go through phases of feeling good. So will see if this phase ends but I hope not.
These MAFs can be really strong and people start herxing
The trick is to start SLOW and start LOW

In australia some people have to start on about 1 tenth (or even 100th) of the recommended dose
 

xrunner

Senior Member
Messages
843
Location
Surrey
. When you saw signs of was working what were those signs? Also for anyone who finished the treatment are you better now and loving a normal life?
I did an overall 12 months on the probiotic maf314. In answer to your questions. The first sign, a couple of weeks into, was improved sleep then after a couple of months a step forward in energy/stamina, this then continued and thirdly my Nagalase normalised. I'm much better now and indeed I enjoy an almost normal life. Best wishes.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
For those with ME/CFS taking GcMAF, I don't think there is any "finishing the treatment." It seems to be an ongoing support but not something that "heals" ME/CFS.

Though some believe GcMAF should be stopped when nagalase normalizes.

I'm looking for a source. I'd like to start with the easiest to tolerate and cheapest forms, and work my way up from there if need be. I've Lyme and co so I don't expect it'll be an easy road but I think my immune system is rather under-functioning these days and small doses might be just the thing to get it going.

Is Enlander's 878 still available? Are there other affordable sources?
 

SB_1108

Senior Member
Messages
315
I did an overall 12 months on the probiotic maf314. In answer to your questions. The first sign, a couple of weeks into, was improved sleep then after a couple of months a step forward in energy/stamina, this then continued and thirdly my Nagalase normalised. I'm much better now and indeed I enjoy an almost normal life. Best wishes.
@xrunner - What is your source for the maf314?
 

xrunner

Senior Member
Messages
843
Location
Surrey
Hi @SB_1108
From a doctor in Vienna. However last time (couple of years ago) I spoke to her she had changed supplier and was using a different form of probiotic gcmaf. Now, from what I have read the 314 is sold under the name Bravo. Just to clarify that I haven't had any gcmaf (nor any other treatment) for over two years.
 
Last edited:

BenFromNZ

Senior Member
Messages
151
Hi @xrunner

Could you tell me what level your nagalase got down to when you say it "normalized"? I'm just asking because some things I've read indicate concerns about not taking it too low or people end up crashing.

BTW Hi everyone, my first post here. I've been reading phoenix rising posts for years to get info on treatments but never posted. So I feel like I know a lot of you already. I've had ME/CFS and fluctuated between bedridden and mostly housebound for nearly 10 years. I'm about to order some GcMAF in the next couple of weeks.

My nagalse levels have been tested through HDR in New Jersey at 3.7 so fairly high and hopeful I will be a good responder. I plan on starting at around 10ng to start with and see how it goes.


Ben
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Could you tell me what level your nagalase got down to when you say it "normalized"? I'm just asking because some things I've read indicate concerns about not taking it too low or people end up crashing.
I've been taking injected GcMAF for years and my nagalase went down steadily and has remained at about .65 for quite a while. I experienced no negative effects from continuing GcMAF after my nagalase became normal. The "concerns" come from Dr. Cheney who was administering it at a much higher dose than I have taken, more frequently and sublingually.
My nagalse levels have been tested through HDR in New Jersey at 3.7 so fairly high
That would be considered high on the scale.
 

BenFromNZ

Senior Member
Messages
151
Hi @Sushi,

Yes, it was from Cheney that I got that idea from. (I realize he is all over the place with things he says though!)

Is there some thought that taking it sublingually causes less reactions than injection?

After your nagalase normalized and you continued treatment did your nagalase keep going down or did it remain static after that?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Is there some thought that taking it sublingually causes less reactions than injection?

After your nagalase normalized and you continued treatment did your nagalase keep going down or did it remain static after that?
No idea about how sublinual delivery would affect things but he was dosing it more often than once a week and at 100 ngs. I have been taking 20 - 25 ngs and yes, my nagalase has remained more or less static after reaching the normal zone.
 

GcMAF Australia

Senior Member
Messages
1,027
Hi @xrunner

Could you tell me what level your nagalase got down to when you say it "normalized"? I'm just asking because some things I've read indicate concerns about not taking it too low or people end up crashing.

BTW Hi everyone, my first post here. I've been reading phoenix rising posts for years to get info on treatments but never posted. So I feel like I know a lot of you already. I've had ME/CFS and fluctuated between bedridden and mostly housebound for nearly 10 years. I'm about to order some GcMAF in the next couple of weeks.

My nagalse levels have been tested through HDR in New Jersey at 3.7 so fairly high and hopeful I will be a good responder. I plan on starting at around 10ng to start with and see how it goes.


Ben
I am assuming NZ may refer to New Zealand
GcMAF is used at
www.StBenedictsHealthCare.com
you probably are already aware of this
 

SB_1108

Senior Member
Messages
315
That would be considered high on the scale.

Mine was 2.90... what is the scale? All I can see is that .95 is the upper end of the reference range.

I'm still not even sure I understand what nagalase is...
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Mine was 2.90... what is the scale? All I can see is that .95 is the upper end of the reference range.
My lab tests for two forms of nagalase--apparent nagalase activity and effective nagalase activity. I am not sure what the difference is but for the former the range is .5 - .95 nMol/ml/min and for the latter, .44 - 1.29 nMol/ml/min.