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

[filfla4]

That is EXCELLENT news Cansado!!!!!!!!!!!!! I'm so happy to hear this! xxxxxxxx

 

[leela]

Cansado this is totally exciting! If I could I would move to Belgium tomorrow!
May your progress, and everybody's, continue......

 

[Sushi]

Hi,
I am not sure if I already reported this but my NK cells are back to normal after being very low for years and years and years. The perforin has normalized. I also tested negative for XMRV culture (serology not in yet), and leaky gut within the range as well. There are no abx anymore on my treatment plan! I have had 28 gcmafs. Moderate to low responder. My immunesystem is still not in order. The anti-oxidant IV's are getting more benificial.
Just a little update for you all. I am doing a little better very very slowly and I can hardly keep up with all of my contacts.

Consado,

Whoopie!!!:victory:

This is great news from our pioneer patient. Hopefully the rest of your body will follow on this good track and you will begin to feel better. Your experience is so important to some of us "beginners." I am also a moderate to low responder (or low to moderate! ) so I will probably take a long time to respond too.

It is wonderful that you no longer test positive by culture and that you NK cells are up. I think all of us taking GcMAF know that it is doing "something" but it is great to hear actual lab reports. Four of us get our 5th injection this week.

Sergio has a question for you: when you say that your leaky gut is better, do you mean your CD 14? And if so, can you say more about that? It seems that as far as some papers that he has read, CD 14 is a marker for macrophage activity. However, KDM seems to consider it as a marker for bacteria passing from the gut to the bloodstream. Do you know KDM's thinking on this?

Sergio send his congratulations too. Whether CD 14 is a marker for macrophage activity, leaky gut, or both, improvement is a winner!

Any word on your progress or experience is golden to the rest of us, so thanks for using your limited energy to post here.

Best,
Sushi

 

[mojoey]

Just to be clear Cansado--- you converted from XMRV-pos to -neg???

 

[Dan_USAAZ]

Just to be clear Cansado--- you converted from XMRV-pos to -neg???

Hi Mojoey,
I will not try to answer for Cansado, but will give my understanding of a negative culture test.
I believe a negative XMRV culture test just means that no active virus was found circulating in the blood at the time the blood was drawn. It does not mean that you are XMRV negative, but it is better result than being culture positive.

I will also take this opportunity to introduce myself, as this is my first post. My name is Dan and I have been following the PR Forums for about 10 months now. I finally created an ID a couple weeks ago. I am XMRV positive by both culture and serology through VipDx.

I want to thank all the thread contributors and Sushi for staring this GcMAF thread. My original treatment plan was to pursue the ARV trifecta, but this thread changed my mind and redirected me toward researching GcMAF. I now believe that GcMAF may be a better approach to start with and I can always fall back on ARVs.
Now the next challenge, determine how to get treatment. Travel to Brussels? Purchase GcMAF from Europe and have it shipped to me? .....
Still working on the plan and welcome any advice.
Best wishes to all.
Dan

 

[froufox]

Hi Cansado, I'm so glad to hear your positive news. Even though it is slow it must be very encouraging for you to know that your tests show that your immune system is improving. I hope that it continues! I have been going through quite a rough time recently and so its really good to hear this! :Retro smile:

Take care

Hi,
I am not sure if I already reported this but my NK cells are back to normal after being very low for years and years and years. The perforin has normalized. I also tested negative for XMRV culture (serology not in yet), and leaky gut within the range as well. There are no abx anymore on my treatment plan! I have had 28 gcmafs. Moderate to low responder. My immunesystem is still not in order. The anti-oxidant IV's are getting more benificial.
Just a little update for you all. I am doing a little better very very slowly and I can hardly keep up with all of my contacts.

 

[Chris]

I just want to say a big "thank you" to all of your brave and enterprising pioneers at this frontier--I am watching with bated breath, and may have a shot at it this summer one way or another despite my discouraging age. I am just going to remind you that Cheney said somewhere that biomarker figures showed improvement before patients reported feeling better, if that is any encouragement. Congratulations and best wishes, Chris

 

[Sushi]

I have been going through quite a rough time recently and so its really good to hear this! :Retro smile:
Take care

Hi Froufox,

Sorry you have been going through a rough time. I have good days and not so good days. Would you feel OK about saying what has been going on in more detail? I doubt if anyone reading this thread would be bored by the details--and I know some of us are really interested in keeping track of each other and our progress and challenges.

This last week I have been very tired, though picked up today in time for my 5th shot. I have also been getting muscle cramps and a couple of days of pre-migraine-type auras that went away quickly and left a minor headache.

Please check in soon!

Very best wishes,
Sushi

 

[mojoey]

I just went through old posts and Cansado said she was positive for XMRV before both saliva and blood.

Also, I thought it was worth reminding that she did ampligen in '99-'00 and said it was really tough on her.

 

[froufox]

Hi Sushi

Thanks a lot for your message and for your support. Yes, it just feels like my immune system is getting very overwhelmed...im getting quite strong head/flu like symptoms which wont see to abate and im feeling a lot of stress on my adrenals, which is the worst feeling really, so i just feel that im crashing all the time and as a result i am not very functional. My endocrine system is pretty whacked anyway so its no surprise really. I suspect as before that because my metabolism is so slow, it cant keep up with the detox.

Ive also been getting a lot of inflammation in my head/brain which is causing me to feel incredibly depressed (and suicidal at times)....i think this is all tied in with the low hormone/endocrine function. Have also been getting brain swelling at times and also this weird feeling which feels like the veins in my head are being squeezed in and out! Thats the only way i can describe it really. Dont know if anyone else has had that symptom?

I did add in Hepapressin last week and did 2 injections in 1 week, so its possible that adding that in made it all a bit too much for me.

Anyway im taking a break from both the GcMAF & the Hep...was supposed to do another injection of both today but thought i should wait a bit for things to ease up. I decided to go for an acupuncture treatment this afternoon just to see if it would help, and told the practitioner to go very gentle, and i think that that might have helped a little bit. It doesnt seem to have made me worse anyway.

Its all very up and down to be honest, as, like u, i THINK that im feeling slightly better at times (compared to how i felt prior to starting GcMAF, eg slightly better energy, and sometimes brain seems to be working slightly better), maybe for a few hours, only to crash again. So it makes me think that good things are happening aswell, and that hopefully im not just causing myself harm!

I wrote to KDM's clinic to let them know whats happening but havent heard back from them yet. I suspect that they would tell me to take a break aswell.

Sorry you have been a lot more tired this week, but glad to hear that u picked up today. I'm glad that your other symptoms seem to be short-lived. Have u been getting any flu like symptoms at all?

Take care, thanks again and best wishes :Retro smile:

Frou

ETA I did add in curcumin the last few days to help with inflammation and that does seem to have helped a bit at times, with mood/brain type stuff.

Hi Froufox,

Sorry you have been going through a rough time. I have good days and not so good days. Would you feel OK about saying what has been going on in more detail? I doubt if anyone reading this thread would be bored by the details--and I know some of us are really interested in keeping track of each other and our progress and challenges.

This last week I have been very tired, though picked up today in time for my 5th shot. I have also been getting muscle cramps and a couple of days of pre-migraine-type auras that went away quickly and left a minor headache.

Please check in soon!

Very best wishes,
Sushi

 

[aquariusgirl]

Sorry you are feeling so lousey.

Oddly, I was talking to a friend last night who said she felt incredibly depressed/suicidal from taking lumbrokinase....bolouke.. Her docs thought that in cleaning out the biofilms, she released a bunch of toxins...

Just offering that up for what it's worth.

Have you done much bug killing froufox prior to this treatment?

I wish we had a better sense of what makes someone a good candidate for this therapy.so that we could plan accordingly.

I wonder if it causes a huge uptick in inflammation & that's what is making it hard to tolerate for some folks.

 

[RivkaRivka]

frou,

i'm so sorry you are suffering so much. i think the depression also comes when we physically feel like hell. i find that my emotions are dictated by my physical state. when i have energy and don't feel sick, i feel like all is well in the world. and when i'm sicker (like now with the flu for 2 solid weeks), i feel emotionally unable to handle anything.

know that we are routing for you!!!!! we are here for you.

CANSADO: that is very exciting news!!! thank you for sharing!!!

rivka's advice to all: do NOT get that flu that is going around. it is a real wing-dinger of a bug.

 

[aquariusgirl]

excellent detective work Joey. I wonder if this prior txt with ampligen, plus whatever else cansado has done, is a factor in her success on gcmaf?

 

[froufox]

Hi aquariusgirl and thanks.

Yes it would make sense wouldnt it that in your friend's case the lumbrokinase perhaps caused some die-off leading to the same symptoms of depression etc.

I havent done a lot of bug killing with antibiotics, i only took some abx for a few months (but i did get a severe reaction/die off to the cyst busters tinizadole & flagyl which completely put me off taking them)...ive mainly done alternative type killing stuff eg i did rife therapy for about 6 months and was all over the shop with that too...it was obvious that it was doing something good, but was just too much so i stopped in the end.

I also did photon therapy for a while...i got big "herxes" from that too (eg severe depression and fatigue, followed by improvements, but not permanent improvements). So i do tend to get those type of symptoms when im herxing.

Havent done much on the anti-viral front, but have had the same reaction to stuff like olive leaf.

I cant tolerate the methylation stuff much either...seem to get too much inflammation/bug killing with that too.

Yes it seems to be an increase in inflammation as i know that inflammatory cytokines cause depression. Also coupled with the low adrenal function, and so there isnt enough cortisol around to counter the inflammation. At least that is my interpretation of what is happening anyway.

Something else i forgot to mention in my other post... a few nights ago I woke up in the middle of the night and had pains in what seemed like my liver...mostly on the right hand side but also slightly on the left hand side too. They were quite sharp and very uncomfortable and i was quite worried at the time but it had mostly gone by the next day. Though im not sure if it was definitely my liver as it was located more around the side rather than directly under my ribcage at the front, so i duno if it was even my lungs?

Yes I guess as this treatment is still in the experimental stage, we all all just guinea pigs really. I'm looking foward to getting my test results back from KDM, maybe the pro-inflammatory cytokine markers will give us a clue as to what is going on.

But I guess its just a case of going very slowly with all this stuff and being very patient! Esp if you've been ill for a long time.


Rivka, thanks!! Im sorry you've been going through such a rough time too emotionally and physically, i can definitely relate!! It sounds like u are getting too inflamed too, with the flu and depression, what do u think? Or do u think it is defintely a new bug that u caught? Hugs.

Take care

 

[Sushi]

Hi Again Froufox,

Thanks for filling us in with your symptoms. Wish you weren't getting them but it is very helpful to compare notes.

I feel like I am getting die-off symptoms too. I have done a lot of bug-killing and toxin bombing in the past. I tried a Far Infrared Sauna this week and I think it helped me. Do you have access to one? It is recommended for inflammation and is also a helpful detox method for some.

Also, have you ever tried high potency ignatia (homeopathic) for the depression symptoms? I always keep some handy cause, as Rivka says, depression goes hand in hand with feeling lousy. The potency that helps me and others with depression (overnight!) is 1 M. If you feel like trying it, it is good to combine in with arnica 1 M too. These high potencies only need to be taken every few days and at bedtime, at least a half an hour after having anything but water in your mouth. Coffee and peppermint will antidote it as will camphor and a few other substances.

Hope you get an answer from KDM soon. I had my 5th shot today but it is too early to be getting symptoms from it except I always sleep about 12 hours on a shot night. Could also be that I have to get up earlier than usual to get to the clinic on time!

Hope you feel better missing a dose this week.

Sushi

 

[froufox]

Hi Sushi

Thanks again, yes its horrible to go through but it definitely helps to talk about it and share experiences!

Thats great that the FIR helped u. Ive had one of those cube ones for a few yrs, but i cant tolerate that much either! Again it leads to too much adrenal stress (duno if due to too many toxins being stirred up, mineral depletion or what..)...so i dont use it very often to be honest. But it might be worth just going in for a few minutes...its just that when im crashing i feel it would make me worse. Really glad you have found it helpful though.

Thats really interesting about the Ignatia and the Arnica, thanx for sharing that info. I'm glad you've found that helpful too. I will definitely look into that. Ive never tried Arnica...think i tried Ignatia once yrs ago, i cant remember if it did anything but i was in a completely different place then anyway.

Hopefully things will settle down a bit more soon anyway.

I hope u dont get too many rough symptoms from your 5th shot and i hope u get a decent night's sleep again tonight! :Retro smile:

Take care

 

[aquariusgirl]

I wonder if it's IRIS?
sushi and serge1942 are both on LDN. maybe that's taking the edge off their IRIS?

 

[serg1942]

Hi guys,

MY GASTROSCOPY + BIOPSY:

I had my gastroscopy with biopsy this afternoon, and I wanted to report on it, as I was knocked out, unlike Vli, so we can compare, especially since KDM seems to be prescribing it often.

The procedure was awesome for me…I was injected with Propofol. I don’t even remember falling asleep. I just had very vivid dreams, and then I woke up for a second, and when I tried to say: “I am still…” and I started dreaming again! When I woke up, after 25 mins or so, everything had been done…I just said: Fantastic!!!! :victory: I was completely high on Propofol, laughing and talking in English with the nurse/Doctor/anesthesiologist (bear in mind that I am speaking in English with Sushi everyday, so my brain was super confused...Imagine the faces of the doctor and the nurse, who did not speak english . I couldn’t convert my thoughts in to words, and started to laugh my head off…

Anyway, aside from this funny anecdote, I am very grateful I was so coward to choose to be put to sleep during the endoscopy…BTW, Sushi witnessed the whole intervention, so she has a complete different and reliable memory of what really happened in there! ;-) [She went in with me, cause if my father would have come, he would've passed out in a minute!]

Well, I now have my stomach samples in my freezer, so if everything goes right, I will send them to RED labs next Monday with dry ice to look for XMRV/MLVS and other viruses.

TONY:

Are the patients you know mostly new patients yet to receive a full program after testing? Maybe ask KDM when next you seem him.

Well, the only patients I know are the ones joining this group, so not sure…Anyway, I am very glad to know that KDM is supporting the methylation cycle in many other patients. This is great news!

NABO:


I second Ronan’s comments to you…That’s exactly what I wanted to say, but better expressed! ;-)

All these patients of DML are getting worse in the beginning and they dont have to stop the nexavir. So why me???

But you think this is all good news, then why are my symptoms getting worse?

Maybe because you are a high responder, your immune system is reacting too strongly, and your side effects are being too strong…This is annoying now, but if this is what is happening, then I guess KDM will tweak your treatment and you will continue with GcMAF in different dosages, frequency? We’ll see. I hope you can see him soon. I wish you lots of luck!

CANSADO:

CONGRATS! Hey, it took years for us to fall sick…the reverse process (healing), cannot take place overnight…It makes perfect sense that the tests results get better first and that the improvements appears later…I told you this was my hope, and I am really glad that it is what you are feeling…I do hope you continue this way!! Hang in there!

Welcome to the forum DAN!

FrouFox:

Thanks for your detailed posts! WE do appreciate them. I wanted to tell you that yesterday and today I am feeling a mixture of depression and angry…Usually my mood state correlates with my energy levels (as Rivka describes), but now it is different. I just felt weirdly angry/down…I am sure it is due to GcMAF, cause it is the same sensation I have experienced in the past with drugs for exitotoxicity (including clonazepam at the beginning), so I know this feeling very well. Cheers and all my best wishes!!!!

RIVKA: Como decs los americanos: I hear you!

Best,
Sergio

 

[mojoey]

Very interesting theory!

I wonder if it's IRIS?
sushi and serge1942 are both on LDN. maybe that's taking the edge off their IRIS?

 

[Ronan]

I also had a few days of Depression which is strange for me. I often get down about my health but this was the first time it was a proper depression. This happened after about shot 4 or 5 but it hasnt reoccurred thankfully.