Alas, I don't know the answer to this.
GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
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Daffodil
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hi sushi. i meant the cause of the inflammation...what could it be.,,
Forebearance
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Did anyone else think what I was thnking? I was really impressed that you were feeling well enough to do a big project Ike sewing curtains, Daf!
Fore
Fore
Sushi
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Daffodil
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thanks guys yes i was doing well for a while. this doesnt feel right..its like a re-infection. the back of my neck hurts like in the beginning.
xoxoxoxxo
xoxoxoxxo
Xandoff
Michael
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I gave myself my sixth GcMAF injection today. My experience has been very good. I feel better for the first two-three days. No inflammation. I am XMRV + plus my Nagalase level was 1.90 before injections. I actually crave GcMAF if that makes any sense. Like craving Ben & Jerry's but healthier. LDN & GcMAF have helped my my chronic pain especially after the GcMAF.
Sushi
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Yes, I understand that craving--waiting to take the next injection!
Glad it is helping,
Sushi
According to this source:
http://www.envita.com/lyme-disease/...tonella-causing-more-chronic-fatigue-problems
Bartonella will raise iL-8. I was positive for Bartonella.
Xandoff
Michael
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Inflammation and Chronic Pain are the bain of my existence! GcMAF helps with this for the first few days......so far.
Daffodil
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i took 18 ng of gcmaf to see what would happen. dont feel much worse because of it. still feel as if something is spreading. new development is lower back pain and cannot bend back without severe pain. this could be completely unrelated to anything since i spend more of my days at the PC and cannot exercise.
i always suspected that Tenofovir might prevent some spreading of infection, while GcMAF would targen provirus. perhaps i was right. thinking of going back on tenofovir after i speak to dr. Enlander.
i always suspected that Tenofovir might prevent some spreading of infection, while GcMAF would targen provirus. perhaps i was right. thinking of going back on tenofovir after i speak to dr. Enlander.
Daffodil
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hi all. so as you know, i am going through a very hard time, not knowing if this downturn is a temporary detox type reaction, or infact a regression.
i got some bloodwork back just now. my 25 hydroxyvitamin D, which had previously risen on GcMAF, is once again very low. they do not give a value but label it "deficient", <20. this could be from new inflammation. 1,25-D is still pending.
my relative CD3 and CD4 are low as before. the absolute CD4 and CD8 have gone down about 200 points.
looks like bad changes in my bloodwork. not sure what to make of this. will try to talk to enlander this week.
i got some bloodwork back just now. my 25 hydroxyvitamin D, which had previously risen on GcMAF, is once again very low. they do not give a value but label it "deficient", <20. this could be from new inflammation. 1,25-D is still pending.
my relative CD3 and CD4 are low as before. the absolute CD4 and CD8 have gone down about 200 points.
looks like bad changes in my bloodwork. not sure what to make of this. will try to talk to enlander this week.
Daffodil
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so i continue to worsen. i came upon this idea in the midst of a very bad crying / praying spell last night lol
lets say i have a retrovirus of some sort, whose provirus is making me ill. gcmaf is targeting that.
lets also say that it is the EBV (which i had high antibodies to on last check) which is somehow awakening this retrovirus. suppose that the tenofovir was targeting the EBV (now i know that adefovir is thought to have an antiherpes effect while tenofovir does not, BUT tenofovir gel can help prevent herpes transmission - so i am wondering if it in fact does have some anti herpes effect).
maybe i got worse around 2 - 3 weeks after stopping the tenofovir because, while i am still targeting provirus with GcMAF, now the EBV is somehow becoming a problem. and maybe i didnt respond to 3 yrs of valcyte and valtrex alone, because i had way too much provirus.
ok maybe this isnt making any sense lol i am VERY fogged up
so anyway i found 2 old valtrex pills i had laying around and took one (long expired i am sure), just to see if i might feel anything.
sorry for all my posts in a row lol
xox
lets say i have a retrovirus of some sort, whose provirus is making me ill. gcmaf is targeting that.
lets also say that it is the EBV (which i had high antibodies to on last check) which is somehow awakening this retrovirus. suppose that the tenofovir was targeting the EBV (now i know that adefovir is thought to have an antiherpes effect while tenofovir does not, BUT tenofovir gel can help prevent herpes transmission - so i am wondering if it in fact does have some anti herpes effect).
maybe i got worse around 2 - 3 weeks after stopping the tenofovir because, while i am still targeting provirus with GcMAF, now the EBV is somehow becoming a problem. and maybe i didnt respond to 3 yrs of valcyte and valtrex alone, because i had way too much provirus.
ok maybe this isnt making any sense lol i am VERY fogged up
so anyway i found 2 old valtrex pills i had laying around and took one (long expired i am sure), just to see if i might feel anything.
sorry for all my posts in a row lol
xox
Sorry Daffodil, I hate to hear of you having a crying/praying spell.
Speculate away. We don't know what we are dealing with here. If we talk through some alternatives someone may work something out.
I'm taking Valtrex. Maybe that is why I responded so well to the MAF314. I'm also taking Imunovir.
Did notice that there was a different effect from antibiotics when I was also taking the Valtrex and the Imunovir.
For some of us is there a combination only that offers the best response?
Speculate away. We don't know what we are dealing with here. If we talk through some alternatives someone may work something out.
I'm taking Valtrex. Maybe that is why I responded so well to the MAF314. I'm also taking Imunovir.
Did notice that there was a different effect from antibiotics when I was also taking the Valtrex and the Imunovir.
For some of us is there a combination only that offers the best response?
Nielk
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Hi Daffodil,
I'm so sorry to read that you are going through this tough time with the GcMaf. Did you speak with Dr. Enlander?
Daffodil
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thanks, all..i really appreciate the support.. i speak with dr. enlander tomorrow.
xoxo
xoxo
Sushi
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Hi Daff,
I usually take a different approach (which works for me
). When I am foggy and don't know what to do, I wait till I do know what to do. I find that action I decide upon under emotional duress, doesn't pan out too well! But if I wait, I usually come up with a reasonable approach.Expired meds can be dicey...sometimes (depending on the med) it not only loses potency but can gain unwanted side-effects. I'd check up with a pharmacist before taking an expired med to see what happens with that individual med as it "ages."
Best wishes,
Sushi
Daffodil
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thanks sushi. i decided to ask my doc for a 1 month trial of valtrex but if he agrees and it doesnt do something quickly, i will have to go back on tenofovir. xoox
Daffodil
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hi all. the last 2 days, despite the bad brain fog, i have been experiencing some energy surges.
i just spoke to Dr. Enlander, who said he is OK with a trial of Valtrex, 2 g a day. I asked him if it is possible for GcMAF to reactivate EBV or HHV6 and he said it is unlikely.
I asked if any other patients declined after 4 months and he said there have been cases of die-off type reactions months into the treatment, sometimes lasting weeks or even months, after which the patient improves.
he could not comment on the tenofovir situation.
he said i should keep taking GcMAF at the dose i usually take.
he wants me to have some immune system testing...t cell subsets, NK cell function, ebv antibodies, etc. Looking at my old notes, i see his staff has asked me to have regular CD57, CD20, and C4a testing but i haven't done this at all.
this time, i plan to apply to have these tests paid for by the canadian gov't so it will be a long while before i find out if they will, and can plan my trip to a border city.
i asked Dr. Enlander about any potential developments with his ongoing studies. he says they are currently doing a study in which they evaluate gene changes(?) after exercise to see what is going on with the immune system
he mentioned that Dr. Mikovits visited him recently but didn't say much about that. they seem to have a good relationship. I asked if he thinks a gammaretrovirus might be involved and he said he is keeping an open mind.
xox
i just spoke to Dr. Enlander, who said he is OK with a trial of Valtrex, 2 g a day. I asked him if it is possible for GcMAF to reactivate EBV or HHV6 and he said it is unlikely.
I asked if any other patients declined after 4 months and he said there have been cases of die-off type reactions months into the treatment, sometimes lasting weeks or even months, after which the patient improves.
he could not comment on the tenofovir situation.
he said i should keep taking GcMAF at the dose i usually take.
he wants me to have some immune system testing...t cell subsets, NK cell function, ebv antibodies, etc. Looking at my old notes, i see his staff has asked me to have regular CD57, CD20, and C4a testing but i haven't done this at all.
this time, i plan to apply to have these tests paid for by the canadian gov't so it will be a long while before i find out if they will, and can plan my trip to a border city.
i asked Dr. Enlander about any potential developments with his ongoing studies. he says they are currently doing a study in which they evaluate gene changes(?) after exercise to see what is going on with the immune system
he mentioned that Dr. Mikovits visited him recently but didn't say much about that. they seem to have a good relationship. I asked if he thinks a gammaretrovirus might be involved and he said he is keeping an open mind.
xox
Sushi
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Sounds like a helpful phone consult. Getting some of that testing done could be very helpful to get a picture of what is happening.
I agree (from my experience) that you can have periods that are very uncomfortable, after months of treatment. Seems like the immune system may sort of reconfigure after a while and respond differently--maybe more vigorously, but testing is the way to go--plus intelligent "waiting-it-out" in consult with a knowledgeable doctor who can adjust doses and other medications and supplements.
Best wishes,
Sushi
Xandoff
Michael
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Hi Daffodil.........I can relate to crying and praying and crashing! I take my GcMAF shots on Friday and after 5 weeks of shots, I have inflammation by Monday , brain fog and lots of chronic pain which = depression. I had failed neck surgery in 2005 and a lot of arthritis in my spine and spinal stenosis and sciatica. I went off all pain meds last December and although I am glad I did it is hard not to have a way to put a stop to the pain. The pain is like a runaway locomotive. The only thing that helps is clonazepam but I have to be very judicial with that.
All my best to you Daffodil and all the others here who post. We are all Brothers and Sisters in Arms. Cymbalta, Gabapentin and other nostrums keep the wolves at the door. Peace out.