GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
- Thread starter Sushi
- Start date
Daffodil
Senior Member
- Messages
- 5,894
oGod can this be true. no no i musnt get hopes up again! lol rrr..i emailed thank you
is anyone out there seeing enlander? do you have to stay in NYC for a long time or just meet him once for bloodwork and consult and then follow up by phone? so he gives you all the gcmaf to take home on the plane?
thank you!
xoxo
is anyone out there seeing enlander? do you have to stay in NYC for a long time or just meet him once for bloodwork and consult and then follow up by phone? so he gives you all the gcmaf to take home on the plane?
thank you!
xoxo
Daffodil
Senior Member
- Messages
- 5,894
hi all. am wondering if you think it is possible to do gcmaf without a doctor's supervision. am too sick to travel to see anyone.
i know that sometimesd the dose has to be lessened due to too much inflammation so thats the part that makes me nervous...
thank you
oh another thing....does anyone know where dr. enlander gets his gcmaf? i read the bgli place takes long to ship and it loses effectivity?
thanks again for all the helpful info i have been getting
xoxoxo
i know that sometimesd the dose has to be lessened due to too much inflammation so thats the part that makes me nervous...
thank you
oh another thing....does anyone know where dr. enlander gets his gcmaf? i read the bgli place takes long to ship and it loses effectivity?
thanks again for all the helpful info i have been getting
xoxoxo
Sushi
Moderation Resource Albuquerque
- Messages
- 19,972
- Location
- Albuquerque
Daffodil
Senior Member
- Messages
- 5,894
thanks sushi. i have contacted dr. enlanders office to make the appt. LOL i asked if I can get it ASAP
Daffodil
Senior Member
- Messages
- 5,894
could someone please tell me how much gcmaf dr. enlander gives you to go home with when you see him ? i guess you have to see him twice; the second time for the bloodwork results and to get the gcmaf?
thank you
thank you
Chris
Senior Member
- Messages
- 845
- Location
- Victoria, BC
Hi, Nabo; I am just reporting something Cheney said a while ago--I know that he and KDM are in touch with each other. I also know that after taking Artesunate at 3 times a week for several months I seemed to run into some trouble, though cannot be assured that it was caused by the Artesunate. I do know that Efferth has a couple of papers on the Research thread (I guess you cannot yet access that) that suggest that long continuance, rather than high dose, can cause problems, that can be neuro cerebral rather than liver. Chris
Forebearance
Senior Member
- Messages
- 568
- Location
- Great Plains, US
Hi Daffodil,
If it helps, I've been taking tiny doses of GcMAF for three months now. I take 1/100th of a standard dose to avoid large amounts of inflammation. Even at that dose, it has been worthwhile. It gives me more stamina. Everyone says there is no benefit to taking more GcMAF than you can tolerate.
Also, if it helps, I continue to take my Lauricidin, an antiviral and antiretroviral, with the GcMAF and the two seem to be complimentary. I'm still taking my mushroom extract, too. It's an immune modulator.
I wish you the best of luck with Dr. Enlander. You probably know that The effectiveness of GcMAF depends partly on one's genetics, so I hope it works on you!
Fore.
If it helps, I've been taking tiny doses of GcMAF for three months now. I take 1/100th of a standard dose to avoid large amounts of inflammation. Even at that dose, it has been worthwhile. It gives me more stamina. Everyone says there is no benefit to taking more GcMAF than you can tolerate.
Also, if it helps, I continue to take my Lauricidin, an antiviral and antiretroviral, with the GcMAF and the two seem to be complimentary. I'm still taking my mushroom extract, too. It's an immune modulator.
I wish you the best of luck with Dr. Enlander. You probably know that The effectiveness of GcMAF depends partly on one's genetics, so I hope it works on you!
Fore.
Daffodil
Senior Member
- Messages
- 5,894
thanks fore are you under a CFS doctor's care, may i ask?
thank you
are you under a CFS doctor's care, may i ask?thank you
Daffodil
Senior Member
- Messages
- 5,894
is anyone using the israel brand? lol looks like i am going to have to read through this entire thread. wish i had stopped arv's and followed this instead.
ugh..my head feels so bad trying to read
ugh..my head feels so bad trying to read
*GG*
senior member
- Messages
- 6,397
- Location
- Concord, NH
Thanks for the info...
hmm dont know what to do know.
kdm told me to take it 3 months every day.... but i dont want dose scary things!!! hmm :worried: :worried:
Forebearance
Senior Member
- Messages
- 568
- Location
- Great Plains, US
Hi again Daff,
You know, you can look at the GcMAF spreadsheet and see what everyone is taking, in a nutshell.
I have a doctor combo -- a local doc who knows nothing about CFS but works with me like a partner and lets me try things, and then if I need a CFS expert I do a phone appt. with Dr. Gordon out in CA. As you know I mostly take natural over the counter things, so I don't feel like I need super close doctor supervision.
I did order the GcMAF myself and figured out the dose myself. I got my calcium and Vit D tested, like you're supposed to. There were no spikes in those things for me after two months of GcMAF use. In fact, my Vit D is still low.
Fore
You know, you can look at the GcMAF spreadsheet and see what everyone is taking, in a nutshell.
I have a doctor combo -- a local doc who knows nothing about CFS but works with me like a partner and lets me try things, and then if I need a CFS expert I do a phone appt. with Dr. Gordon out in CA. As you know I mostly take natural over the counter things, so I don't feel like I need super close doctor supervision.
I did order the GcMAF myself and figured out the dose myself. I got my calcium and Vit D tested, like you're supposed to. There were no spikes in those things for me after two months of GcMAF use. In fact, my Vit D is still low.
Fore
shannah
Senior Member
- Messages
- 1,429
Posted Today:
http://drbradstreet.org/2012/01/07/observations-of-gcmaf-in-autism-continued/
Observations of GcMAF in Autism Continued
January 7, 20124 Comments
Obviously anecdotal observations are not a substitute for rigorous scientific investigations but they are not invaluable. I have been observing strongly positive outcomes from GcMAF (the Vitamin D receptor protein) in the majority of the children I am aware of who are being administered this compound. Its mechanism of action may involve the vitamin D receptor, calcium channel regulation or specific issues related to pathogen persistence, or more likely some combination of all of these.
Regardless of the mechanism(s) of action, here is the ongoing progress of one of the patients I have been highlighting in this blog.
Hello Dr. Bradstreet,
Happy New Year! Im so happy to tell you about the amazing and exciting progress that has been seen, not only by us (the parents), but also my daughters teachers and therapists. After the Christmas break, we were expecting the notes from school to say, Your daughter is having a rough day/ week, some difficulty adjusting back to school and a structured setting, etc. Instead the notes read, She had an excellent day/week! No behavior issues at all, it seems like shes grown up! During the course of the GCMAF treatment weve seen improvements and this is a phenomenal. Her Language development went from repeating one word such as iPad over and over again, meaning she wanted to play with it, to When I get home, I want to play with the iPad. From single word requests like Alice, meaning the Alice in Wonderland ride, to expressing a whole itinerary at Disneyland. She went from labeling items in a picture book to descriptive sentences; clearly shes been responding extremely well to the treatment. Theyve reported that she is talking a lot at school! She went on a field trip to see the Nutcracker at the local performing arts center with the neurotypical students and did really well. Also, she used to be afraid of movie theaters, thats gone now and we can go to the movies with her and shell sit quietly and enjoy a 90-minute movie. She used to be petrified of the Haunted Mansion, Star Tours and Pirates of the Caribbean rides at Disneyland, now she has conquered them and is targeting the other rides she was previously afraid of. All of these accomplishments we would never would have even thought possible and wonders just never cease. Funny thing too, the eczema disappeared and she eats a lot of different kinds of food (all GFCF of course). She used to just eat GFCF corndogs and fries, now she eats GFCF peaches, GFCF grilled cheese and ham sandwiches, and even GFCF sushi! Needless to say, we are feeling very blessed and we are so excited to see what more amazing things are in store towards her recovery in 2012! Thank you so much for all that youve done and continue to do!
Sincerely,
M and R
http://drbradstreet.org/2012/01/07/observations-of-gcmaf-in-autism-continued/
Observations of GcMAF in Autism Continued
January 7, 20124 Comments
Obviously anecdotal observations are not a substitute for rigorous scientific investigations but they are not invaluable. I have been observing strongly positive outcomes from GcMAF (the Vitamin D receptor protein) in the majority of the children I am aware of who are being administered this compound. Its mechanism of action may involve the vitamin D receptor, calcium channel regulation or specific issues related to pathogen persistence, or more likely some combination of all of these.
Regardless of the mechanism(s) of action, here is the ongoing progress of one of the patients I have been highlighting in this blog.
Hello Dr. Bradstreet,
Happy New Year! Im so happy to tell you about the amazing and exciting progress that has been seen, not only by us (the parents), but also my daughters teachers and therapists. After the Christmas break, we were expecting the notes from school to say, Your daughter is having a rough day/ week, some difficulty adjusting back to school and a structured setting, etc. Instead the notes read, She had an excellent day/week! No behavior issues at all, it seems like shes grown up! During the course of the GCMAF treatment weve seen improvements and this is a phenomenal. Her Language development went from repeating one word such as iPad over and over again, meaning she wanted to play with it, to When I get home, I want to play with the iPad. From single word requests like Alice, meaning the Alice in Wonderland ride, to expressing a whole itinerary at Disneyland. She went from labeling items in a picture book to descriptive sentences; clearly shes been responding extremely well to the treatment. Theyve reported that she is talking a lot at school! She went on a field trip to see the Nutcracker at the local performing arts center with the neurotypical students and did really well. Also, she used to be afraid of movie theaters, thats gone now and we can go to the movies with her and shell sit quietly and enjoy a 90-minute movie. She used to be petrified of the Haunted Mansion, Star Tours and Pirates of the Caribbean rides at Disneyland, now she has conquered them and is targeting the other rides she was previously afraid of. All of these accomplishments we would never would have even thought possible and wonders just never cease. Funny thing too, the eczema disappeared and she eats a lot of different kinds of food (all GFCF of course). She used to just eat GFCF corndogs and fries, now she eats GFCF peaches, GFCF grilled cheese and ham sandwiches, and even GFCF sushi! Needless to say, we are feeling very blessed and we are so excited to see what more amazing things are in store towards her recovery in 2012! Thank you so much for all that youve done and continue to do!
Sincerely,
M and R
Sushi
Moderation Resource Albuquerque
- Messages
- 19,972
- Location
- Albuquerque
I don't think people are updating the spreadsheet, so it is probably not a very good gauge.
Sushi
Daffodil
Senior Member
- Messages
- 5,894
shannah....nice! how autistic people's brains seem to work reminds me so much of my own brain fog.
hello everyone
I have been using a couple of weeks artesunate.
I have built up very slowly because I am very sensitive to certain medications medication and I really can not.
I had to take 1 tablet everyday of 50. but i was still on a half tablet.
I feel the last few weeks, more dizzy but since this weekend it gotten so bad that I'm almost fainted 2 times. I am very dizzy and lightheaded and everything is running.
I find this very scary, I've never seen so much!
I am also a couple of weeks ago, around the same time as the artesunate started to gc maf
I started with 25 nanograms but soon felt that too much was thus reduced to 10 nanograms.
Last year I have a used gc maf for 6 motnhs and then I had never suffered from dizziness. I had many other complaints because I shot too high a dose. namely 100 nanograms so eventually I had to stop because I could no longer side.
Well that's a long story.
my question really, this extreme dizziness and near fainting is it because of the gc maf or artesunate??
or something totaly different???????????
I am very worried, please help.
I have been using a couple of weeks artesunate.
I have built up very slowly because I am very sensitive to certain medications medication and I really can not.
I had to take 1 tablet everyday of 50. but i was still on a half tablet.
I feel the last few weeks, more dizzy but since this weekend it gotten so bad that I'm almost fainted 2 times. I am very dizzy and lightheaded and everything is running.
I find this very scary, I've never seen so much!
I am also a couple of weeks ago, around the same time as the artesunate started to gc maf
I started with 25 nanograms but soon felt that too much was thus reduced to 10 nanograms.
Last year I have a used gc maf for 6 motnhs and then I had never suffered from dizziness. I had many other complaints because I shot too high a dose. namely 100 nanograms so eventually I had to stop because I could no longer side.
Well that's a long story.
my question really, this extreme dizziness and near fainting is it because of the gc maf or artesunate??
or something totaly different???????????
I am very worried, please help.
Daffodil
Senior Member
- Messages
- 5,894
wondering if anyone well enough to help a CFS patient is in NYC....very very ill here and need to see enlander...dont have anyone to go with me.
thank you
thank you
Chris
Senior Member
- Messages
- 845
- Location
- Victoria, BC
Nabo, I do not know whether it is the Gc-MAF or the Artesunate that causes your new symptoms--or an interaction between the two. But Efferth 2010 (you can read the abstract in the Research thread) does report a few reports of ototoxicity (inner ear, hearing), which presumably could lead to dizziness. One problem with the research on Artesunate is that nearly all the human use of the drug has been short term intensive anti-malarial stuff--Efferth does warn that long term use rather than short-term high intensity use seems associated with the build up of problems. You could try just stopping the Artesunate to see whether that helps? Chris