good blog. but she wrote this in her blog. is it correct?
"XMRV is hanging out in the macrophages..."
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GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
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good blog. but she wrote this in her blog. is it correct?
"XMRV is hanging out in the macrophages..."
also on "no poster girl"'s blog, she wrote:
"A normal result on the nagalase test would be a value of zero to 1.0. Thus far in [cheney's] practice, the results have ranged from 1.1 to 6.5.
He explained that hed found that nagalase level predicts response or non-response to the standard GcMAF protocol . People below 4 respond; those above 4 do not. This can be gotten around, he told us, by doubling the dosage of GcMAF, and, interestingly, by increasing the bodys supply of vitamin D through sun exposure or a tanning bed (GcMAF is also called Vitamin-D binding protein)."
i found this interesting. my nagalase was 1.90, i think (i have to go check).
also, i thought cheney was telling folks to STOP taking vit d while on gcmaf??? that it was dangerous to take it while on gcmaf?
anyway, No Poster Girl is a brave soul and we are lucky she is blogging about her cheney appts. i hope her gcmaf journey goes well!!!!
"A normal result on the nagalase test would be a value of zero to 1.0. Thus far in [cheney's] practice, the results have ranged from 1.1 to 6.5.
He explained that hed found that nagalase level predicts response or non-response to the standard GcMAF protocol . People below 4 respond; those above 4 do not. This can be gotten around, he told us, by doubling the dosage of GcMAF, and, interestingly, by increasing the bodys supply of vitamin D through sun exposure or a tanning bed (GcMAF is also called Vitamin-D binding protein)."
i found this interesting. my nagalase was 1.90, i think (i have to go check).
also, i thought cheney was telling folks to STOP taking vit d while on gcmaf??? that it was dangerous to take it while on gcmaf?
anyway, No Poster Girl is a brave soul and we are lucky she is blogging about her cheney appts. i hope her gcmaf journey goes well!!!!
lansbergen
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In the monkey's it is found in lungmacrophages
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Nope, I'm not on the spreadsheet yet. Maybe once I've been on GcMAF for a bit and have something to report.
We Cheney patients are free to post about our appointments and anything we learn from him in person.
We Cheney patients are free to post about our appointments and anything we learn from him in person.
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Cheney told me during my appointment that macrophages were one of the reservoirs for XMRV.
Charles555nc
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Cheney's patients getting bgi's GcMAG arent making the progress that KDM's patients are making, from what Ive read here. Makes me think about spoilage or product quality.
Also ordering GcMAF from BGI is just begging for customs to hold up like they do about 90% of the time.
Ive heard of no one talk about what storage conditions BGI's GcMAF gets put under for such an expensive product (100$+) over the long trip from europe to the United States.
There website clearly states that they will not replace or refund a spoiled product because of customs.
So anyone know when a RELIABLE source of GcMaf is coming the United States? Maybe someone could ask KDM in an appointment.
Also ordering GcMAF from BGI is just begging for customs to hold up like they do about 90% of the time.
Ive heard of no one talk about what storage conditions BGI's GcMAF gets put under for such an expensive product (100$+) over the long trip from europe to the United States.
There website clearly states that they will not replace or refund a spoiled product because of customs.
So anyone know when a RELIABLE source of GcMaf is coming the United States? Maybe someone could ask KDM in an appointment.
Cansado,
You might not be aware that several doctors in Belgium who are trying to treat CFS in ways outside the national health care standard have had actions taken against them akin to what happened to Dr. Myhill in the UK. I am too tired to look it up, but there are articles related to that available.
It can also be harsh for doctors in the US to specialize in CFS, as it is pretty much anathema in the medical community, and almost a guarantee you will not get funding if you are a researcher. We also have "standard of care" guidelines, and rules about "experimental" treatments, which can be enforced at any time should whatever regulating agency get a wild hair.
I can fully understand why doctors would want privacy on this matter.
It's tough for us, because we all desperately need an open forum of information exchange.
After all, when patients post, they often post with a login name for themselves, but disclose all kinds of info about their doctor. While it is extremely helpful for us to know the maximum of what is happening treatment-wise from each other, I can see how a doctor would not want to risk his or her own career, or ability to continue practicing, due to indiscriminate public chat from patients.
Maybe we should consider some kind of fancy encryption code for doctors and treatments!
You might not be aware that several doctors in Belgium who are trying to treat CFS in ways outside the national health care standard have had actions taken against them akin to what happened to Dr. Myhill in the UK. I am too tired to look it up, but there are articles related to that available.
It can also be harsh for doctors in the US to specialize in CFS, as it is pretty much anathema in the medical community, and almost a guarantee you will not get funding if you are a researcher. We also have "standard of care" guidelines, and rules about "experimental" treatments, which can be enforced at any time should whatever regulating agency get a wild hair.
I can fully understand why doctors would want privacy on this matter.
It's tough for us, because we all desperately need an open forum of information exchange.
After all, when patients post, they often post with a login name for themselves, but disclose all kinds of info about their doctor. While it is extremely helpful for us to know the maximum of what is happening treatment-wise from each other, I can see how a doctor would not want to risk his or her own career, or ability to continue practicing, due to indiscriminate public chat from patients.
Maybe we should consider some kind of fancy encryption code for doctors and treatments!
mojoey
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That's why I think it's imperative for the patients that do these therapies to contribute to a crowdsourced spreadsheet. If all the patients doing gcmaf openly contributed their experiences to a spreadsheet, we would have hundreds of data points, perhaps in the 4-digits in a few years. It's a lot easier to shut down a doctor or a treatment for word-of-mouth anecdotal success than it is for consolidated, measurable first-hand contributions of anecdotal success if the treatment is truly successful. This is one way we can transfer the balance of decision-making somewhat into our own hands.
thanks, garcia, for re-posting the spreadsheet. i wish folks would update it weekly (and DATE the update so we know the date!!!), so we can see the progression of your responses to gcmaf.
i just did my 2nd shot. i did it at home, subcutaneous. i was nervous (i'm all alone), so i did it with a friend watching over me via skype for an hour. all went well.
i know others said their vial of gcmaf did not quite make a full mL. but mine did, plus a bit extra.
i put my gcmaf in 5 insulin syringes (0.20 per syringe) and shot one up and re-froze the remaining 4.
i wanted to do it via IV at my doctor's office, but he said the charge would be $50!!! (that's even with me supplying the gcmaf). i can't afford that.
i just did my 2nd shot. i did it at home, subcutaneous. i was nervous (i'm all alone), so i did it with a friend watching over me via skype for an hour. all went well.
i know others said their vial of gcmaf did not quite make a full mL. but mine did, plus a bit extra.
i put my gcmaf in 5 insulin syringes (0.20 per syringe) and shot one up and re-froze the remaining 4.
i wanted to do it via IV at my doctor's office, but he said the charge would be $50!!! (that's even with me supplying the gcmaf). i can't afford that.
hi charles,
i know two folks using BGLI and both got reactions, indicating it is potent stuff. one person is seeing great results from taking it (improved energy, stamina and less chemical sensitivies). the other person reacted very strongly to the BGLI gcmaf and has to drop to a much much reduced dose. but this person's reaction was very strong (even if it was a bad reaction), so that means the bgli gcmaf is potent.
in terms of your 2nd point, both of these people had no trouble getting bgli's shippment. i know of a third person who got their shipment with ease also. it came with cold packs and was cold upon arrival.
a month or so ago, bgli told me and others that if the shipment is *confiscated* by customs, they'd replace it. just once.
as far as a "reliable" source of GcMAF coming to the US, i have not heard of anything.
if you have heard of any info that contradicts what i wrote above, i'd love to hear about it. like have you heard that cheney's patients are not responding to gcmaf? or that bgli's product is getting held up in customs? or that they are not replacing the product if it is confiscated? all info that would be good to know!
best,
rrrr
right on joey!
Charles555nc
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Bgi has definitely changed its website, it used to have something like "we are in no way responsible for the oppressive actions of your country's customs officials"-saying they would not replace their shipment over customs problems. Now I cant find that warning on the website anymore. But I dont see any promise of replacing it either...
I have heard from a Cheney patient that BGI has been better about its documentation for getting through customs. She says Cheney is discovering ways to turn low responders into high responders, like increasing the dosage in certain cases.
BTW that spreadsheet doesnt seem to have a high percentage of patients experiencing improvement...but maybe its too early to tell of course.
I have heard from a Cheney patient that BGI has been better about its documentation for getting through customs. She says Cheney is discovering ways to turn low responders into high responders, like increasing the dosage in certain cases.
BTW that spreadsheet doesnt seem to have a high percentage of patients experiencing improvement...but maybe its too early to tell of course.
mojoey
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Last I checked it was about 40% experiencing some degree of positive response
i have personally talked to 7 patients this week who are doing better due to gcmaf (one is on nexavir + gcmaf). some are on our spreadsheet but have not updated it in a while.
bgli told me, and separately another patient, that they will replace confiscated (but not held up) gcmaf. if you email them to ask, they'll likely tell you the same thing. (i doubt this is something they'd announce on their website, tho...)
someone should ask to see their GMP certificate. (Good Manufacturing Practices -- something the FDA mandates for their FDA approval). i asked bgli if they were certified, and they said yes. but i did not ask to see a copy. i think it would be prudent to do this.
on the other hand, i know patients are responding to their product.
bgli told me, and separately another patient, that they will replace confiscated (but not held up) gcmaf. if you email them to ask, they'll likely tell you the same thing. (i doubt this is something they'd announce on their website, tho...)
someone should ask to see their GMP certificate. (Good Manufacturing Practices -- something the FDA mandates for their FDA approval). i asked bgli if they were certified, and they said yes. but i did not ask to see a copy. i think it would be prudent to do this.
on the other hand, i know patients are responding to their product.
within 1 hour of doing the gcmaf subcutaneous shot today, i felt a sense of well being. i felt calmer, emotionally and physically. it has lasted a few hours now.
what is interesting is that i did not feel this sense of calm or well being before the shot, especially since i had gone off my betablocker, which regulates my heart rate. before the shot, my heart had been pounding, in fact, it had been pounding since i went off my betablocker the night before.
(i went off my betablocker because i have decided to go off all meds (for 3 half lives of that med) before each shot, and 6 hrs after each shot. i got this advice from someone who knows a good deal about gcmaf, but is not my gcmaf doctor. i was advised that meds can sometimes interfere with the gcmaf's efficacy.)
what is interesting is that i did not feel this sense of calm or well being before the shot, especially since i had gone off my betablocker, which regulates my heart rate. before the shot, my heart had been pounding, in fact, it had been pounding since i went off my betablocker the night before.
(i went off my betablocker because i have decided to go off all meds (for 3 half lives of that med) before each shot, and 6 hrs after each shot. i got this advice from someone who knows a good deal about gcmaf, but is not my gcmaf doctor. i was advised that meds can sometimes interfere with the gcmaf's efficacy.)
Lou
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With re to Charles555nc concerns: I think you're mistaken; sorry, I know you're mistaken as I take bgli gcmaf, and it is neither spoiled or of inferior quality. What evidence do you have that Cheney patients are making less progress than KDM patients? Though I'm not a Cheney patient, as mentioned before I take bgli gcmaf and in twenty five years of trying just about everything for me/cfs nothing has proved more effective. That's my experience so far.
I ordered twice, it was delivered twice. That's fairly reliable so far. I am being somewhat blunt because in addition to posters there are probably many others here watching, and waiting, and weighing the options trying to decide if they will use gcmaf, and if so, what source. So this is coming from someone who actually has experience with BGLI and their gcmaf.
I ordered twice, it was delivered twice. That's fairly reliable so far. I am being somewhat blunt because in addition to posters there are probably many others here watching, and waiting, and weighing the options trying to decide if they will use gcmaf, and if so, what source. So this is coming from someone who actually has experience with BGLI and their gcmaf.
Charles555nc
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I just heard from other people's posts that Cheney patients awhile ago werent have much of a reaction to the bgi's product. Even Cheney admitted that he is trying to get more people into the responder category as I said in my last post. I have heard better news more recently in regards to Cheney's patients. The reaction to GcMAF may have improved as bgi's ability to navigate customs has improved.
We are talking about a 600+ dollar product that will need to be rebought several times. If your getting it in the United States, its traveled a long distance, so asking about shipping conditions is COMPLETELY rational thing to do.
Some of us cant simply take the chance of throwing that kind of money away when bgi's website used to have a clear warning on its web site that it would not replace the product because of customs- so you ran the risk of paying 600+ dollars for nothing. But like I said, that warning seems to have disappeared.
I am in no way against GcMAF, but please believe BGI isnt a collection of buddies trying to save the world, but a corporation easily making a hefty profit on this product.
30-40% positive reaction (ranged from mild positive to very positive) I wouldnt call a high percentage personally. I really wish people would update more frequently.
All that being said, I am considering whether I could suffer the trip to KDM or whether I should try out BGI's GcMAF.
We are talking about a 600+ dollar product that will need to be rebought several times. If your getting it in the United States, its traveled a long distance, so asking about shipping conditions is COMPLETELY rational thing to do.
Some of us cant simply take the chance of throwing that kind of money away when bgi's website used to have a clear warning on its web site that it would not replace the product because of customs- so you ran the risk of paying 600+ dollars for nothing. But like I said, that warning seems to have disappeared.
I am in no way against GcMAF, but please believe BGI isnt a collection of buddies trying to save the world, but a corporation easily making a hefty profit on this product.
30-40% positive reaction (ranged from mild positive to very positive) I wouldnt call a high percentage personally. I really wish people would update more frequently.
All that being said, I am considering whether I could suffer the trip to KDM or whether I should try out BGI's GcMAF.
i understand the difficulty in weighing the options of BGLI or KDM. there are pros and cons.
i think it is more like $1000 if you go the BGLI route, as there is a 6 vial minimum, and shipping and handling costs on the lab's end, and the cost of the UPS service.
but it cost me about $5000 to go the KDM route, tho i now have a big supply of gcmaf and i got a number of labs/tests done, too. (you don't have to do any labs, if you don't want to.) and i paid for my partner's airline tix.
however, even given all that, i think going the BGLI route is a very good choice. i am not sure the choice i made was the right one or not. it could be that one lab's product is better quality than anothers. and we have no idea which is better, regardless of what someone may say.
i think it is more like $1000 if you go the BGLI route, as there is a 6 vial minimum, and shipping and handling costs on the lab's end, and the cost of the UPS service.
but it cost me about $5000 to go the KDM route, tho i now have a big supply of gcmaf and i got a number of labs/tests done, too. (you don't have to do any labs, if you don't want to.) and i paid for my partner's airline tix.
however, even given all that, i think going the BGLI route is a very good choice. i am not sure the choice i made was the right one or not. it could be that one lab's product is better quality than anothers. and we have no idea which is better, regardless of what someone may say.