I think the migraine incident happened in August, and from what I recall the doctor at Kingston told me the chance of my GP giving me it was very low, which was confirmed by a later appointment I had with my GP. I don't know why KDM prescribed O2 to me. To be very honest, I have NOT been doing the oxygen as per KDM's recommendation as it's not that cheap here and if I were to follow him to the letter I would be burning through something like a tank of O2 every two days for like 9. I'm not being presumptious because I've had a LOT of experience breathing oxygen before and to be very honest with you it has never really helped (not evenwhen I was doing it to alleviate migraines). (Frankly I'd rather channel that money into HB12 injections.) I'm still doing the ozone insufflations though. Those give a much more marked reaction (e.g. shingles) at the beginning although that was peculiar to me and a) if you don't have herpes zoster, that won't be a problem, and b) I haven't shown such reactions lately anyway, not since starting gcmaf.
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GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
- Thread starter Sushi
- Start date
I think the migraine incident happened in August, and from what I recall the doctor at Kingston told me the chance of my GP giving me it was very low, which was confirmed by a later appointment I had with my GP. I don't know why KDM prescribed O2 to me. To be very honest, I have NOT been doing the oxygen as per KDM's recommendation as it's not that cheap here and if I were to follow him to the letter I would be burning through something like a tank of O2 every two days for like 9. I'm not being presumptious because I've had a LOT of experience breathing oxygen before and to be very honest with you it has never really helped (not evenwhen I was doing it to alleviate migraines). (Frankly I'd rather channel that money into HB12 injections.) I'm still doing the ozone insufflations though. Those give a much more marked reaction (e.g. shingles) at the beginning although that was peculiar to me and a) if you don't have herpes zoster, that won't be a problem, and b) I haven't shown such reactions lately anyway, not since starting gcmaf.
froufox
Senior Member
- Messages
- 440
Thanx vli, wow yeah that is expensive! Theres no way that i could afford that either. Sorry oxygen never helped u much anyway. My understanding is that ozone is a more effective treatment compared to oxygen so that would fit in with your experience, though i guess we're all different. Thats interesting that u havent had any reactions to the ozone since being on GcMAF.
I did have an ozone treatment once and could feel some benefits fairly soon afterwards although then i felt worse over the following few days, perhaps because my body couldnt handle the level of die-off or oxidation. I actually have a 2nd hand ozone machine here but have never used it for various reasons, partly because im not sure that its a good quality one anyway.
Anyway if i dont do the oxygen or ozone i might go back to have some more HBOT. I had one HBOT treatment a couple of months ago at my local MS therapy centre, and that definitely did seem to do something eg kill something off (so it felt like), as i had a really sharp pain in my head during the treatment and im pretty sure my energy increased significantly about a week later. On reflection it seemed to be too much of a coincidence to not be related to the HBOT. I had been on GcMAF already for several weeks so i dont think it was that. As the therapy centre is a charity they only expect a donation which is fairly affordable so that is good.
Anyway thanx again for the info and for sharing your experience it was really useful :Retro smile:
I did have an ozone treatment once and could feel some benefits fairly soon afterwards although then i felt worse over the following few days, perhaps because my body couldnt handle the level of die-off or oxidation. I actually have a 2nd hand ozone machine here but have never used it for various reasons, partly because im not sure that its a good quality one anyway.
Anyway if i dont do the oxygen or ozone i might go back to have some more HBOT. I had one HBOT treatment a couple of months ago at my local MS therapy centre, and that definitely did seem to do something eg kill something off (so it felt like), as i had a really sharp pain in my head during the treatment and im pretty sure my energy increased significantly about a week later. On reflection it seemed to be too much of a coincidence to not be related to the HBOT. I had been on GcMAF already for several weeks so i dont think it was that. As the therapy centre is a charity they only expect a donation which is fairly affordable so that is good.
Anyway thanx again for the info and for sharing your experience it was really useful :Retro smile:
- Messages
- 25
Hi guys,
I know most of you got your gcmaf supplies from KDM.
But anyone order it from gcmaf.eu?
Regards,
HC
I know most of you got your gcmaf supplies from KDM.
But anyone order it from gcmaf.eu?
Regards,
HC
i do because it is the only one assayed and compared to yamamoto version of gcmaf by indipendent researchers and universities while bgli type has been not assayed
professor ruggiero is making his studies using mainly gcmaf from gcmaf.eu and from yamamoto gcmaf
i am at the 5th shot and i have had no sides, only good effects but i dont have CFS only hbv infection and super high nagalase at 6.7
professor ruggiero is making his studies using mainly gcmaf from gcmaf.eu and from yamamoto gcmaf
i am at the 5th shot and i have had no sides, only good effects but i dont have CFS only hbv infection and super high nagalase at 6.7
hi all,
yes, redlabs will test anyone, from what i understand.
an update on me: my last two shots of gcmaf (my 5th and 6th shots) were still at 1/5th of vial, maybe a tiny bit more. and each time i felt the wobbly, jelly legs where i was not able to walk much. shot #5 was worse, and just walking to the bathroom was tuff. shot #6 i only felt that same jelly legs (like i have no muscle in my legs) when i had to walk uphill. but i felt jelly arms with shot #6. my arms felt too weak to do anything. i had not felt this from shot #5.
also, with shot #5, i got very red blooshot eyes. and i did not get that as much with shot #6.
shot #5 was IV, shot #6 subcutanous. i feel that they are about the same in how my body reacts to them, and so i may not do many more IV shots, as it cost me money.
i will go up to 1/4 dose now, instead of 1/5th dose.
thanks to all for yr input on the GcMAF 101 list of symptoms. i'm so sorry this has taken me longer than i thought to do. i hope to do it soon.
shot #7 is tomorrow.
yes, redlabs will test anyone, from what i understand.
an update on me: my last two shots of gcmaf (my 5th and 6th shots) were still at 1/5th of vial, maybe a tiny bit more. and each time i felt the wobbly, jelly legs where i was not able to walk much. shot #5 was worse, and just walking to the bathroom was tuff. shot #6 i only felt that same jelly legs (like i have no muscle in my legs) when i had to walk uphill. but i felt jelly arms with shot #6. my arms felt too weak to do anything. i had not felt this from shot #5.
also, with shot #5, i got very red blooshot eyes. and i did not get that as much with shot #6.
shot #5 was IV, shot #6 subcutanous. i feel that they are about the same in how my body reacts to them, and so i may not do many more IV shots, as it cost me money.
i will go up to 1/4 dose now, instead of 1/5th dose.
thanks to all for yr input on the GcMAF 101 list of symptoms. i'm so sorry this has taken me longer than i thought to do. i hope to do it soon.
shot #7 is tomorrow.
i think it would be good to see if there is a difference with synthoms using gcmaf.eu, bgli or kdm gcmaf
i have heard from a super reliable source (not important to methion here who), that another guy using gcmaf.eu source with CFS is having my same good effects and no bad sides.
he even mistakenly took a double dose of gcmaf but had only good effects, too bad he is probably not aware of this community.
all this can mean nothing because he is just one person but it would be good to compare also the type from gcmaf.eu since it is the only one assayed and compared to the yamamoto
i have heard from a super reliable source (not important to methion here who), that another guy using gcmaf.eu source with CFS is having my same good effects and no bad sides.
he even mistakenly took a double dose of gcmaf but had only good effects, too bad he is probably not aware of this community.
all this can mean nothing because he is just one person but it would be good to compare also the type from gcmaf.eu since it is the only one assayed and compared to the yamamoto
Berthe
Senior Member
- Messages
- 136
- Location
- near Antwerp
Dear Rrrr,
I'm so glad you mention the wobbly legs. I have never had this symptom before. When I started the Gc MAF it happened to me once a week, mostly the day after the injection. It was a weird sensation that passed by. The last three weeks it became worrysome. The wobbly feeling appears to stay and I don't like it a bit. I don't know if this is the same symptom as muscle weakness (because I have never experienced it)? Since a few days the arms also begin to feel jelly and therefor heavy.
Sometimes I think of what someone told me about the danger of Gc MAF, activation of the virus in the reservoirs and making things worse... I hope this is a symptom that will be relieved once I stop taking the Gc MAF.
Love,
Berthe
I'm so glad you mention the wobbly legs. I have never had this symptom before. When I started the Gc MAF it happened to me once a week, mostly the day after the injection. It was a weird sensation that passed by. The last three weeks it became worrysome. The wobbly feeling appears to stay and I don't like it a bit. I don't know if this is the same symptom as muscle weakness (because I have never experienced it)? Since a few days the arms also begin to feel jelly and therefor heavy.
Sometimes I think of what someone told me about the danger of Gc MAF, activation of the virus in the reservoirs and making things worse... I hope this is a symptom that will be relieved once I stop taking the Gc MAF.
Love,
Berthe
Spring
Senior Member
- Messages
- 133
- Location
- Netherlands
Hello Gc Maf-ers,
I have had 3 injections so far. This week I will take the 4th. I have wobbly legs since a few days. I didn't make the connection with Gc Maf before I saw it mentioned here right now. I also experience depressive feelings, which I hate because I had a major depression a few years ago. I need to remember myself that it's temporarily and that it is because of toxic waste in my brain. I'm also short of breath, but I don't know for sure that it's the Gc Maf or hay fever.
I don't have had positive reactions so far. I've just had 2 very bad days because of diarrhoea. Tomorrow I will start with Rifaximine (antibiotics). I hope that will do something good.
Next week I will go to Dr. Meirleirs office to get the 5th injection. I hope he will keep it on half a dose because I think it is enough. I don't feel like trying a higher dose. (I'm a high responder)
I hope I can post something positive soon!!!
Best wishes,
Spring
I have had 3 injections so far. This week I will take the 4th. I have wobbly legs since a few days. I didn't make the connection with Gc Maf before I saw it mentioned here right now. I also experience depressive feelings, which I hate because I had a major depression a few years ago. I need to remember myself that it's temporarily and that it is because of toxic waste in my brain. I'm also short of breath, but I don't know for sure that it's the Gc Maf or hay fever.
I don't have had positive reactions so far. I've just had 2 very bad days because of diarrhoea. Tomorrow I will start with Rifaximine (antibiotics). I hope that will do something good.
Next week I will go to Dr. Meirleirs office to get the 5th injection. I hope he will keep it on half a dose because I think it is enough. I don't feel like trying a higher dose. (I'm a high responder)
I hope I can post something positive soon!!!
Best wishes,
Spring
Berthe
Senior Member
- Messages
- 136
- Location
- near Antwerp
Hi Spring,
I'm also a high responder and experienced some depression during my half doses. When I lowered the dosis (authorized by De Meirleir) to a quart dose the depression which is cytokine-induced decreased. I'm also short of breath since the MAF and a friend of mine who is on MAF also is short of breath (even after a six week break) so I guess these are typicall symptoms of the treatment.
Thanks for responding and sharing your experiences. I wish you al the best with your treatment.
Love,
Berthe
I'm also a high responder and experienced some depression during my half doses. When I lowered the dosis (authorized by De Meirleir) to a quart dose the depression which is cytokine-induced decreased. I'm also short of breath since the MAF and a friend of mine who is on MAF also is short of breath (even after a six week break) so I guess these are typicall symptoms of the treatment.
Thanks for responding and sharing your experiences. I wish you al the best with your treatment.
Love,
Berthe
froufox
Senior Member
- Messages
- 440
Hi rrrr, Spring & Berthe,
Thanx for sharing your experiences, and I'm sorry everyone has been struggling with difficult symptoms. As mentioned previously Ive also had a lot of depression from the GcMAF....think its due to the increase in TNF@ & other cytokines, but on a lower dose (1/4-1/5), it is much reduced...any dose higher than that and it comes back big time.
I also wanted to mention that Ive had difficulty breathing aswell and also weak wobbly legs at times....not all of the time but coincidentially I did get both of these symptoms quite badly 2day...in fact i nearly collapsed on the floor my legs were so weak this morning! I also had a lot of inflammation around my head and neck. I think that this is all down to adrenal stress/low cortisol and as a result I think that my inflammation just gets really out of control, probably partly from the GcMAF and i think also due to diet/gut probs too. Anyway, it seemed to pass as the day went on and I felt a bit better, thankfully. I also took some glucose powder today which did seem to help with the weak legs.
I'm up to my 18th shot of GcMAF but im still very uncertain as to whether im making progress or not...some days i think im improving, other days like today it feels like im going backwards and not getting anywhere. I do feel the Nexavir helps tho, with brain inflammation mainly.
Im sorry others are struggling too, but at least its good to share our experiences!
Take care everyone
Thanx for sharing your experiences, and I'm sorry everyone has been struggling with difficult symptoms. As mentioned previously Ive also had a lot of depression from the GcMAF....think its due to the increase in TNF@ & other cytokines, but on a lower dose (1/4-1/5), it is much reduced...any dose higher than that and it comes back big time.
I also wanted to mention that Ive had difficulty breathing aswell and also weak wobbly legs at times....not all of the time but coincidentially I did get both of these symptoms quite badly 2day...in fact i nearly collapsed on the floor my legs were so weak this morning! I also had a lot of inflammation around my head and neck. I think that this is all down to adrenal stress/low cortisol and as a result I think that my inflammation just gets really out of control, probably partly from the GcMAF and i think also due to diet/gut probs too. Anyway, it seemed to pass as the day went on and I felt a bit better, thankfully. I also took some glucose powder today which did seem to help with the weak legs.
I'm up to my 18th shot of GcMAF but im still very uncertain as to whether im making progress or not...some days i think im improving, other days like today it feels like im going backwards and not getting anywhere. I do feel the Nexavir helps tho, with brain inflammation mainly.
Im sorry others are struggling too, but at least its good to share our experiences!
Take care everyone
filfla4
Senior Member
- Messages
- 236
Hi everyone,
I'm not managing to keep up with this thread regularly, since my son is very ill. Has everyone been updating the spreadsheet? Can somebody post the link to it here please? Thanks.
I have had to be inconsistent with my GcMAF treatment and for the second time I skipped a dose last week. Today I had a half dose and hope that I'll be ok to cope with everything going on in my life at the moment. I have been much more active recently and my pains, particularly in my legs are getting worse again, which is such a great shame, since I had seen so much improvement between January-April. Hopefully I'll manage to get back on track again soon.
Wishing you all the best!!!
xx
I'm not managing to keep up with this thread regularly, since my son is very ill. Has everyone been updating the spreadsheet? Can somebody post the link to it here please? Thanks.
I have had to be inconsistent with my GcMAF treatment and for the second time I skipped a dose last week. Today I had a half dose and hope that I'll be ok to cope with everything going on in my life at the moment. I have been much more active recently and my pains, particularly in my legs are getting worse again, which is such a great shame, since I had seen so much improvement between January-April. Hopefully I'll manage to get back on track again soon.
Wishing you all the best!!!
xx
- Messages
- 25
Hi filfla4,
I hope you cope well with your family through these difficult moments. Keep the positive thinking and energy going!
https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0
I saved the link previously, hopefully it's updated.
I hope you cope well with your family through these difficult moments. Keep the positive thinking and energy going!
https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0
I saved the link previously, hopefully it's updated.
hello to all. every day I visit the forum but I do not participate much by the difficulty of the language and just a short time that I have. I am in my dose 20 of gcmaf. always complete doses. high and low, some weeks he was very hard to continue the treatment. I want to pass on an illusion message for which they are bad in gcmaf. every week I am a little better, is slow, I am very happy. my woman this pregnant woman of 2 months and this in rest absolute, my father has been 40 day operated of prostate. I must later work 8 hours every day and all the tasks of house and of helping a little father. I give thanks to God to give the force to be able to take the situation me.
Daffodil
Senior Member
- Messages
- 5,875
filfla..my thoughts are with you and your son. sending good vibes...
i had lots and lots of sideeffects. then i had a 2 week break and felt better.
Had contact with KDM and he told me to stop even longer (minimal off 8 weeks)
So now i have a big break from gc maf. june 15th back to KDM.
On the dutch forum there are more people with a break around the 10 weeks.
Hope to see improvement soon!!
Had contact with KDM and he told me to stop even longer (minimal off 8 weeks)
So now i have a big break from gc maf. june 15th back to KDM.
On the dutch forum there are more people with a break around the 10 weeks.
Hope to see improvement soon!!
Spring
Senior Member
- Messages
- 133
- Location
- Netherlands
Thanks for sharing Tormenta!
Berthe
Senior Member
- Messages
- 136
- Location
- near Antwerp
Hi Tormenta,
Thanx for sharing and congratulations. A baby is great. A little bundle of joy. I hope we all stay in touch to talk about our experiences with the MAF. It really helps me to read your comments.
Like Spring, my neck and shoulders burn like crazy. The last weeks continually. But I guess this is due to the building up of the MAF and I'm planning to give myself a well deserved and needed break.
Fifla, I wish you all the luck and best with your son. I send you my love.
Big hug for everybody on MAF or antiretrovirals :victory:
Esther
Thanx for sharing and congratulations. A baby is great. A little bundle of joy. I hope we all stay in touch to talk about our experiences with the MAF. It really helps me to read your comments.
Like Spring, my neck and shoulders burn like crazy. The last weeks continually. But I guess this is due to the building up of the MAF and I'm planning to give myself a well deserved and needed break.
Fifla, I wish you all the luck and best with your son. I send you my love.
Big hug for everybody on MAF or antiretrovirals :victory:
Esther
Hi we are not cfs patients but found you as a gcmaf forum. We posted a thread a while back regarding my partners unexplained high vitamin d levels. Thankfully it is now twice the upper normal level and is expected to return to normal levels within two months. Didn't really make the connection at the time, but he had muscle weakness esp in his legs. the doc said that muscle weakness can be one of the symptoms of high vit d levels. We are pleased as he now has a cd4 count of 359 yippee!!! so thing are looking good. Wish all of you the best in your journey to good health. Now he is better we can continue with our charity work.
i've booked for the nagalase test at red labs, so they will draw blood at Himmunitas clinic.do you know the cost for the room at the eurovolleycenter?the website doesn t tell anything
i see it is very close to the clinic, is it possible to walk to Himmunitas from eurovolley?
thank you for the feed back
i see it is very close to the clinic, is it possible to walk to Himmunitas from eurovolley?
thank you for the feed back