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

[suzanne]

Most of you following this thread will know I have had a 4 month break from GcMAF due to an intense inflammatory set of symptoms after 4 weeks on a dose of 20ng a week.

I have last night I injected 5 ng ( as best I could measure and dilute with saline solution). I woke this morning with a wiped out feeling ( slept for 10 hours straight), have some pain in my hips, have worse head pain than usual and just feel wiped out. I am just not sure if this is how I should feel on the first day after the dose or if this indicates that I should reduce the dose even further. What I don't want to happen is that I push through like last time and get to week 4 and have such a set of inflammatory symptoms that I am forced to stop and deal with the inflammation, which for me is a nightmare as it involves rolling migraines. The back pain was bad but the migraines were intolerable.

It is hard to know about the dosing when I have so little experience to draw on. I guess I am thinking that I may need to wait more than 1 week to trial another dose ( Sushi you seemed to indicate that some were dosing every other week or 3) and when I am ready to dose again, it may need to be half of what I just tried- like 2.5ng? How do you guys reckon this sounds? Is anyone else on this tiny amount of GcMAF and doing better? I am not sure what to make of my inability to take much.

I am blabbing on a bit here, but my tiny dosing tolerance also extends to just about everything else I try. I used to be on the Marshal Protocol about 5 years ago and did well for a few years and tolerated the dose on 40mg benicar (olmetec) 4 times a day. This time around I was only able to tolerate about 1 mg 2-3 times a day. I have no idea why I used to be able to tolerate so much more, perhaps the pathogen load has really increased in the intervening 5 years? At least, that is my laymans take on it No one else seems to have given me a better explanation at this point.

Any suggestions would be welcome

 

[Sushi]

Most of you following this thread will know I have had a 4 month break from GcMAF due to an intense inflammatory set of symptoms after 4 weeks on a dose of 20ng a week.

I have last night I injected 5 ng ( as best I could measure and dilute with saline solution). I woke this morning with a wiped out feeling ( slept for 10 hours straight), have some pain in my hips, have worse head pain than usual and just feel wiped out. I am just not sure if this is how I should feel on the first day after the dose or if this indicates that I should reduce the dose even further. What I don't want to happen is that I push through like last time and get to week 4 and have such a set of inflammatory symptoms that I am forced to stop and deal with the inflammation, which for me is a nightmare as it involves rolling migraines. The back pain was bad but the migraines were intolerable....It is hard to know about the dosing when I have so little experience to draw on. I guess I am thinking that I may need to wait more than 1 week to trial another dose ( Sushi you seemed to indicate that some were dosing every other week or 3) and when I am ready to dose again, it may need to be half of what I just tried- like 2.5ng? How do you guys reckon this sounds? Is anyone else on this tiny amount of GcMAF and doing better? I am not sure what to make of my inability to take much.

Any suggestions would be welcome

Hi Suzanne,

No, you shouldn't feel like that after a dose. Yes, you probably should wait a few weeks and try a lower dose. Dr. Bradstreet is having success with as little as 1 ng. I don't think we can go too low--as even 1 ng is going to exponentially activate more macrophages than a healthy body would be doing.

I think you are right to consider that you do best with "nano-dosing" on other things too.

It does sound like it could be an inflammatory effect of the immune system trying to attack too much at once (now there is a scientific observation! )

Hope the reaction subsides,
Sushi

 

[suzanne]

Hiya Sushi,
Thanks for the insight about Dr Bradstreet's 'nano' dosing. I have rad a lot of stuff on his site, with interest, but never picked up his dosing, so that is really helpful.

I am definitely going to wait until I feel more normal again before I try another dosing. Funny you know, that as today wore on I noticed that I had more energy and just felt weller, but at another level i had bad headache. There is definitely something happening- I just have to find the perfect dosing schedule for me. The other kinda odd thing is that KMAF, just made me feel unwell for 3-4 days, but never weller. On the GcMAF I have consistently had a feeling of being weller, even when there are some other symptoms that may be worse in degrees. It is this that has enticed me back to GcMAF over the KMAF.

I am definitely going to drop my dose down- perhaps about half ( 2.5 ng) but the timing of when I do this will be dictated by how I feel.

I will keep posting abuot how I am going, and hopefully I will settle into a 'protocol' of sorts, soon.

I keep thinking that my posts sound a bit self indulgent as the focus is all about me, but I am hopeful that there will be others who come after me who may benefit from the input that I get from you guys that have gone before me.

x

 

[Sushi]

Hiya Sushi,
Thanks for the insight about Dr Bradstreet's 'nano' dosing. I have rad a lot of stuff on his site, with interest, but never picked up his dosing, so that is really helpful.

I am definitely going to wait until I feel more normal again before I try another dosing. Funny you know, that as today wore on I noticed that I had more energy and just felt weller, but at another level i had bad headache. There is definitely something happening- I just have to find the perfect dosing schedule for me. The other kinda odd thing is that KMAF, just made me feel unwell for 3-4 days, but never weller. On the GcMAF I have consistently had a feeling of being weller, even when there are some other symptoms that may be worse in degrees. It is this that has enticed me back to GcMAF over the KMAF.

I am definitely going to drop my dose down- perhaps about half ( 2.5 ng) but the timing of when I do this will be dictated by how I feel.

I will keep posting abuot how I am going, and hopefully I will settle into a 'protocol' of sorts, soon.

I keep thinking that my posts sound a bit self indulgent as the focus is all about me, but I am hopeful that there will be others who come after me who may benefit from the input that I get from you guys that have gone before me.

x

"What is happening with me and what I am trying," is the grist to help others try to figure out what they want to do. I think it is very helpful to share that since not many doctors give us a clue!

Glad you at least got a bit of "oomph" from the injection!

Sushi

 

[Daffodil]

hi all. i wanted to report that after last week's 2 better days after a very tiny dose of 5 ng GcMAF, i decided to try 7 ng this week. again, i am having 2 better days.

1 or 2 days after the injections, i am more inflamed and feel pretty awful. then, things settle down a bit. i also sleep a lot after my injections.

on the 7 ng, my lower back didn't pain much. i think i will stay on this dose.

now, i think that these micro-doses are much better for long term patients with extreme inflammation.

xoxo

 

[Symptomatic]

If this isn't the right place to ask, let me know. I am curious how those of you who are doing sub-100 ng doses are handling the storage/dilution of GcMAF. Perhaps there is already info somewhere in these 142 pages, but it might be like looking for a needle in a haystack.

The gcmaf.eu website seems to indicate that GcMAF can only be frozen once, and is only good in the fridge for 8 weeks. If I ever decide to go this route, I will *not* be starting with 100 ng, and would want to get the most bang for my buck out of that expensive bottle, so wondering how others are handling this.

Thanks!

 

[cyrusromeo]

Yes, people do have trouble with GcMAF and it really needs some very good testing to see if you are a good candidate and, if you are, what would be an appropriate dose. But, yes many are doing well with it and holding their gains.

I am one of them. Another patient I know has gone from being housebound to being in the second year of medical school and others have been able to go back to work part or full time.

It is tricking to identify good candidates and it also needs careful monitoring. Probably the most common problem people experience is inflammation--and this is dose dependent and also seems to relate to what co-infections you have--hence the need for testing.

GcMAF is not a drug--it is something that the healthy body produces naturally. Those with serious diseases often produce an enzyme (nagalase) that interferes with the body's ability to produce GcMAF--hence injecting it or taking it in a yogurt, is a work-around. Taking or injecting it also lowers nagalase for most patients.

Best,
Sushi

 

[cyrusromeo]

I'd guess that you aren't waiting long enough for the inflammation to die down. Don't see how GcMAF could "stop working." It is something that the body produces naturally and macrophages are vital to immune function.

It takes more like months than weeks for inflammation to die down once it really kicks in (IRIS as Carla said). Then when you take another dose, it just revives the inflammation. Also, are you taking really small doses? Not 15 - 20 ngs but more like 5 ng? Five ng still activates vastly more macrophages than normally happens in a healthy body.

Sushi

Sushi, how do you discern between inflammation, herxing and iris!? I've just started the gcmaf, dose yesterday. I know there are things one can take to calm the affects; did you wait to see what happened and then address based on symptoms?
Christa

 

[Sushi]

Sushi, how do you discern between inflammation, herxing and iris!? I've just started the gcmaf, dose yesterday. I know there are things one can take to calm the affects; did you wait to see what happened and then address based on symptoms?
Christa

IRIS is an extreme inflammatory response. You really want to avoid it! Inflammation seems to feel different for different patients. For me it is aching limbs.

A lot of patients take an antihistamine and something to deal with inflammation (something herbal) because some level of inflammation happens to most and you don't want it to get out of control. If it gets out of control, you have to take a break from GcMAF to let it subside.

Best wishes with this--keep us posted. What dose did you take?

Sushi

 

[GcMAF Australia]

Suzanne,
It is great that you are posting here!!
I am very glad that gcMAF is doing something!
With the inflammation as Sushi says the dosing is very important.
with doubling a dose giving say 10 times effects such as inflammation as it appears to be like an exponential or cascade effect.
Regarding the benicar Meg at https://chronicillnessrecovery.org/
appears to be very expert and very ready to help as she has had personal experience.
She has helped a some quite sick people that i know.

 

[GcMAF Australia]

Sushi, how do you discern between inflammation, herxing and iris!? I've just started the gcmaf, dose yesterday. I know there are things one can take to calm the affects; did you wait to see what happened and then address based on symptoms?
Christa

many people have started at much too high a dose
One motto is start low and start SLOW
regards and bestest wishes

 

[GcMAF Australia]

If this isn't the right place to ask, let me know. I am curious how those of you who are doing sub-100 ng doses are handling the storage/dilution of GcMAF. Perhaps there is already info somewhere in these 142 pages, but it might be like looking for a needle in a haystack.

The gcmaf.eu website seems to indicate that GcMAF can only be frozen once, and is only good in the fridge for 8 weeks. If I ever decide to go this route, I will *not* be starting with 100 ng, and would want to get the most bang for my buck out of that expensive bottle, so wondering how others are handling this.

Thanks!

Hi Sympto!
People have diluted it with saline which i presume is purchased from pharmacy
or from dr
can use search here- the search button is at top right of screen.
the GcMaf site has email contact for queries

 

[cyrusromeo]

IRIS is an extreme inflammatory response. You really want to avoid it! Inflammation seems to feel different for different patients. For me it is aching limbs.

A lot of patients take an antihistamine and something to deal with inflammation (something herbal) because some level of inflammation happens to most and you don't want it to get out of control. If it gets out of control, you have to take a break from GcMAF to let it subside.

Best wishes with this--keep us posted. What dose did you take?

Sushi

.25 And any suggestions on what one takes for inflammation (I'm very sore today!) would be appreciated. I've heard turmeric.
Christa

 

[cyrusromeo]

.25 And any suggestions on what one takes for inflammation (I'm very sore today!) would be appreciated. I've heard turmeric.
Christa

He's keeping me at that dose for 2 months.

 

[Sushi]

.25 And any suggestions on what one takes for inflammation (I'm very sore today!) would be appreciated. I've heard turmeric.
Christa

Christa,

You said your dose was .25--.25 what--ml? Are you taking GcMAF from GcMAF.eu?
If it is from GcMAF.eu and it is .25 ml, that is a very high dose. GcMAF doses are measured in nanograms, so let us know how many nanograms you took. The products from GcMAF.eu and BGLI are very concentrated.
Curcumin helps some with inflammation--a couple of grams a day. Also anti-histamines help and a variety of other herbals.
Best wishes,
Sushi

 

[Xandoff]

I just received my latest Nagalase levels which were 1.10.
In March of this year before starting GcMAF I was at 1.9 for my Nagalase level. I have taken 24 injections since starting on June 21, 2012. Normal levels are 0.32-0.95. My Doctor recommends continuing as my levels have improved significantly. I don't feel much better. I don't feel much worse. Just had an appointment with a Pain clinic this week that demoralized me. I have to stay away from Doctors that don't understand this disease! When will I learn?

 

[Daffodil]

hi all. just spoke to my doctor regarding metametrix results. he said these tests are new and imperfect. he said it is intresting that my pH is high, h. pylori is high...e.coli is low...yeast is high...prevotella borderline high....

he wants me to take the breath test for bacterial overgrowth and also h pylori stool test before he considers any treatment.

he seemed to prefer Vancomycin for prevotella. he has seen people do well on this drug.

i see it is almost $2000 for a 2 week course and my local canadian doctor has refused to prescribe it for me. i am not sure what to do it my american doctor thinks i should try it.

xoxoxo

 

[Sushi]

hi all. just spoke to my doctor regarding metametrix results. he said these tests are new and imperfect. he said it is intresting that my pH is high, h. pylori is high...e.coli is low...yeast is high...prevotella borderline high....

he wants me to take the breath test for bacterial overgrowth and also h pylori stool test before he considers any treatment.

he seemed to prefer Vancomycin for prevotella. he has seen people do well on this drug.

i see it is almost $2000 for a 2 week course and my local canadian doctor has refused to prescribe it for me. i am not sure what to do it my american doctor thinks i should try it.

xoxoxo

Xifaxin (rifaximin) took care of prevotella for me--can you ask him about that?

Sushi

 

[Daffodil]

hi Sushi. he did say xifaxin works, too. i think he just prefers vancomycin because he has personal experience with it.

 

[tyson oberle]

Hi Daffodil,
Your doctor said that Metametrix tests are new and imperfect. What stool tests does he think is the best? I have already done the genova stool tests a few times and I wanted to upgrade to the metametrix stool test because I thought it was the best out there. Maybe Sushi can give some insight also because I noticed she is very experienced with tests and treatments.

Tyson