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

[ukxmrv]

The MAF's seem so different it must be hard to tell when one is on the "right dose". With the MAF314 that I am taking the worst of the suspected IRIS effect was over within the first few weeks. Now I am taking a small cup of MAF314 each day with no obvious bad effects except every now and then. The improvement continues for me.

On my first MAF attempt last years it was easy for me to tolerate the IRIS or whatever the effect was because I was already having good effects from the first week. There was no obvious culmulative effect for me. I didn't need to pulse it.

I'm sure that GCMAF Australia is right about the colostrum being the determining factor but I did hear from a patient who saw Dr Santos-Konig recently and he was told that Ruggerio has been changing the culture slightly after having feedback that for PWME it was too strong.

I wish that I knew why some patients could tolerate the MAF's and some could only tolerate small amounts.

 

[suzanne]

Wow, ukxmrv, it is fantastic to hear that you are making good progress with minimal if any set backs. Keep us posted.

I am really frustrated that I am in the categroy that seems to find this hard to find a tolerable and sustainable dose without triggering significant IRIS. I took a dose of 5 ng 3 weeks ago and have suffered the usual exacerbation of migraine, hip and back pain and itchy skin all over ( which I suspect is caused from inflammation in the CNS)

OI dont want to give up just yet as I did notice some feeling better in the first 4 weeks I took the GcMAF at a dose of 20 ng- but I ended up crashing on this dose due to the cumulative effect of the IRIS over time.

I am hoping I can try again soon and I am going to head down the path that Sushi reported was the dosing regime for many autistic kids- about 1 ng. How ridiculous, but true. I have no choice but to give this a go, as I am desperate to improve from daily migraine and terrible itchy.

At the same time I am looking into the mast cell theories. I had an immediate bad reaction to the neuroprotek, so and asking around about that. I also had the exact same reaction ( headches and feel like vomiting) when I took a combined H1 and H2 antihystamine together last night- strange? There must be science that would help to explain these reactions?

x

 

[Daffodil]

I need to go down to 1 - 2 ng too. I am still doing 6 - 7 ng and feeling foggy and fatigued. Like Suzanne. first 4 weeks of 20 ng were great.

Suzanne...have you looked into gut bactria testing? Overgrowth of certain types of bacteria can trigger migraines..

Just got back from Buffalo where I had a hydrogen and methan breath test. The technician said it looked like the hydrogen was high.

xoxxo

 

[suzanne]

Hi Daffodil

Isn't it frustrating to have felt pretty good for those first 4 weeks at 20ng and now I just trigger violent inflammatory symptoms at even the smallest doses. Sad but I had better believe it. I am still struggling from the onset of inflammation from my 5 ng dose 3 weeks ago. It is settling but the hip pain flares still and my skin itches- another sign for me of inflammatory flare up

I have had many metametrix tests over the years. I have moderate candida levels and tested positive for streptococcus. I have been treated now but never feel any better during or after gut programs of various types. I am sure the gut is involved but am not sure it is the gut that is the source of my issues- this is purely based on my observations that treating my gut never seems to get me to feel any better.

BTW, Dr Ignatio Blanco from Spain has been talking with me about mast cells and FMS- particularly-
alpha-1-antitrypsin deficiency and celiac

I have been tested for celiac bu not the other- I thought this may be of some interest to others, so have put it put there even though it does not fit in this thread.

cheers

Suzanne

 

[ukxmrv]

Suzanne, I took Benadryl (both USA and UK formulas) for the early suspected IRIS type reaction to the MAF314. Can tolerate the flavonoids contained in Neuroprotek (looked them up on line now) and generally do well on anti-histamines (but no where near a cure). My family is a very allergic one.

 

[suzanne]

I definitely reacted badly to one or other anti histamines last night- odd really as I have taken them both before but not together which may be the difference?
I took 150mg zantac and 10mg zyrtec. As an experiment ( dont you hate being your own guinea pig) I took 150mg of zantac only tonight to try and figure what I reacted to. On another thread someone told me it is likley I reacted to the 10mg of zyrtec. I really need to experiment. It seems that some are saying it might be useful to take both a H1 nad H2 anti histamine but that I may have to gradually build my dose.

I will look into the benedryl. I assume that this is a H1 type antihistamine?

 

[Daffodil]

i am at the point now where my energy level is definitely better but the fog is still there. it might be a little less on some days but it is very much present. this is just so upsetting.

most people i speak to say that treating gut issues did not help the fog much but there are a couple of people who say it did help. they did not find much wrong in my gut anyway, other than possible h. pylori overgrowth.....i just cannot imagine that treating that will clear it.

 

[Symptomatic]

suzanne
Daffodil

Sending positive thoughts your way, and hoping you both feel better.

 

[Daffodil]

hi all

got h pylori antigen test results..negative. however, i think the breath test was abnormal....

 

[Daffodil]

i keep thinking about how azt cut right thru the fog like nothing in 20 yrs. i knew if i could take a large dose, i would be totally clear-minded again. i knew it.

 

[Forebearance]

yes
they were finding that taking a daily dose for 3-4 days and then having 3-4 days off made it a bit more tolerable, they could then have some days when they felt better . This is early days for them and so it remains to be seen what happens over the longer term.

I was taking one dose of MAF 878 a week, and that worked best for me.

 

[Daffodil]

hi all. not sure if it was the right time, but i decided to start 2 month trial of famvir. i have done antivirals for years long ago, but never with gcmaf. since i started famvir 2 1/2 days ago, i have felt pretty run down and flu-like. just worse in general.

hope everyone had a good christmas,
xox

 

[Daffodil]

hullo, all. i spoke to my doc today. he says he would like me to try 10 days of rifaxamin but didnt recommend probiotics. i have to now search high and low for a doctor willing to prescribe this, cuz my current doctor says no. perhaps a GI specialist.
xox

 

[Sushi]

hullo, all. i spoke to my doc today. he says he would like me to try 10 days of rifaxamin but didnt recommend probiotics. i have to now search high and low for a doctor willing to prescribe this, cuz my current doctor says no. perhaps a GI specialist.
xox

Can't the doc who recommended it, prescribe it? What dose did he suggest?

Sushi

 

[Daffodil]

hi sushi. the doctor who recommended it is in NYC and my insurance wont work there. i think he wants to try a high dose, 550 mg 3 times a day.

from what i am reading, even the GI docs here dont really prescribe it. i have someone i can try.

 

[suzanne]

Hi ya,
Hoping for some advice. I am really struggling. It has been about 5 weeks now since I took the 5ng of GcMAFadn i am still having excerbated inflammatory reactions- like increased migrain and sore hips.

I have experimente with taking some luteolin ( in the form of nueroprotek and hen some chamomile oil). I took one capsule of neuro protek and had a violent hadache and nausea within abut 30 minutes. This lasted about 8-10 hours. I today took one drop of chamomile oil on my wrist and wam- same reaction. I undertand that pomegranate is also high in luteolin and i have had these same reactions to pomegranate in the past ( vomiting, headache and nausea). Coul dit be that the common denominator is luteolin. I ma desperate to find something to settle thte inflammaion but it seems most things I have tred i react badly to- so far I have tried:
various antihystamines ( havent tried benedryl yet); hydrocortisone; curcumin; vitamin C.

Seems like eerything I take I have a reaction to- odd really as I have taken vitamin C in the past, but it now seems to cause a massive pain response and just makes me worse.

Any thoughts, do I just have to try and sit it out and then try a smaller dose of GcMAF, like 1 ng?

Not sure where all this is going if anywhere. So frustrating.

 

[Daffodil]

hi suzanne. i would take a smaller dose of gcmaf, if it were me. i am thinking of lowering mine to like 2 ng. i skipped it entirely this week.

obviously, it does something good in the long run and the fact that you are responding in some way, is a good sign, i would think...

in the past, every drug that made me worse in the short term - AZT, valcyte, tenofovir, Gcmaf, etc - did help later on (valcyte only a tiny tiny bit though). it takes a lot of patience...

xoxoxo

 

[Overstressed]

Hi ya,
Hoping for some advice. I am really struggling. It has been about 5 weeks now since I took the 5ng of GcMAFadn i am still having excerbated inflammatory reactions- like increased migrain and sore hips.

I have experimente with taking some luteolin ( in the form of nueroprotek and hen some chamomile oil). I took one capsule of neuro protek and had a violent hadache and nausea within abut 30 minutes. This lasted about 8-10 hours. I today took one drop of chamomile oil on my wrist and wam- same reaction. I undertand that pomegranate is also high in luteolin and i have had these same reactions to pomegranate in the past ( vomiting, headache and nausea). Coul dit be that the common denominator is luteolin. I ma desperate to find something to settle thte inflammaion but it seems most things I have tred i react badly to- so far I have tried:
various antihystamines ( havent tried benedryl yet); hydrocortisone; curcumin; vitamin C.

Seems like eerything I take I have a reaction to- odd really as I have taken vitamin C in the past, but it now seems to cause a massive pain response and just makes me worse.

Any thoughts, do I just have to try and sit it out and then try a smaller dose of GcMAF, like 1 ng?

Not sure where all this is going if anywhere. So frustrating.

Hi suzanne,

I would not continue Gc-Maf for now until the inflammation sets down. And when you re-start, start with a much smaller dose, like Daffodil suggests. I would also be very cautious what you combine together with Gc-Maf. Perhaps you should try to identify your co-infections and treat them first before you re-start.

Best wishes,
OS.

 

[Forebearance]

Suzanne, I have had some luck with AllerTame by Jarrow to calm down GcMAF induced inflammation.
I also get relief from inflammation in general from Seven Precious Mushroom extract, although my doc says he would have expected the mushroom extract to do the opposite.

I hope you feel better soon.
Forebearance

 

[Daffodil]

this famvir is really kicking my butt! whats up with that? my antibodies arent even high...interesting