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

thanks for your feed back, maybe it was all due to the high dose, i am ok on this week lower dose

i will try B complex vitamins for extreme irritability as you suggested.......when it happens it is impossible to have a social life or work normally so it sure deserves a try to sort it out

Rrrr said:

many of us ME/CFS patients are on hydroxocobalamin, injectable, subcutaneous. ME/CFS doctors have been prescribing this for a long time now.

KDM has many of his patients on 10,000 mg 3x per week. i'm on less. recently i crashed, and stopped my b12 injections, just in case the high doses were contributing to too much detox and adding to my crash.

over the years i have found that b12 shots give me more energy and stamina, but i personally have not found them helpful with brain fog. i do find B complex pills help me with irritability.

i do not take magnesium, except a 250 mg pill at night, to help with sleep. i tried weekly magnesium shots many years ago. painful! and they did not help with any of my symptoms.

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Rrrr said:

KDM has many of his patients on 10,000 mg 3x per week.

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Just a note so no one freaks out--that should be 10 mg 3x per week! Or a lower dose daily.

Sushi

Thanks for sharing your experience Leonora, thats all really interesting!

In my case I did 6 shots at the 100ng dose, before dropping to 1/4 or 1/5 as the side effects and inflammation just got way too severe. As with u, KDM also told me that my initial response was good and that things were working as they should (im heterozygote, so a moderate responder according to my VDR results), as i did also have quite strong flu like symptoms and other symptoms that were considered a positive immune activation response. But then things got a bit more crazy...

Yes it makes perfect sense that response depends on other factors like coinfections etc. Re the calcium channels not working properly, are u on Nexavir now to help with that?

Its interesting about the copper, i did read about the link with the cell surface proteins....ive always been suspicious about copper in my case as i fit some of the symptomatology, plus just intuitively aswell, although my copper results were normal, but i know that regular tests for copper are not accurate as copper, like mercury, is usually sequestered in the tissues. So thats something else that i will need to discuss with KDM. I do think tho that he should start people off on the lowest dose and then if they can tolerate that ok build the dosage up, rather than starting on the top dose. Also because it seems that the effects of GcMAF do build up over time and can linger for quite a while in the body.

Take care.

My last two redlabs test kits were stopped by customs. Redlabs told me in order for them to send out another kit, I need to pony up 200 euros. Nope not a typo. I understand they need to recoup some shipping costs, but I can't afford this. I just got off the phone with a lab in the U.S. that will test for VDR. This lab has been recommended by several doctors prescribing GcMAF. Once I get confirmation via email, I'll post details.

mojoey said:

My last two redlabs test kits were stopped by customs. Redlabs told me in order for them to send out another kit, I need to pony up 200 euros. Nope not a typo. I understand they need to recoup some shipping costs, but I can't afford this. I just got off the phone with a lab in the U.S. that will do this. This lab has been recommended by several doctors prescribing GcMAF. Once I get confirmation via email, I'll post details.

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What tests are you looking for--nagalase? Seems like US customs is getting "sticky." Wonder what is up. When I sent blood to Redlabs I didn't get a kit from them, so it was one-way FedEx traffic from the US to Belgium. Wonder if that has changed too?

Any other customs reports?

Sushi

Spring said:

Hi Leonora,

Welcome here and thank you for explaining some things. I saw your input on the Gc Maf sheet and worried about you and the treatment. I hope you will continue to post here because we can learn a lot from each other. I had allready high C4a before Gc Maf, but no HHV or other proven infections. Now I'm on a 5 week break after 8 shots because of severe fatique. I will know my nagalase this week.
Hope you will improve very soon!

Best regards,
Spring

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spring, can you tell us if you feel any better 5 weeks after you have stopped your gcmaf? or if you still feel just as bad as when you stopped it? i ask because i stopped gcmaf 2 weeks ago due to feeling very sick and in those 2 weeks off gcmaf i have not gotten any better.

rrrr

Oops lab that tests for VDR. Vitamin Diagnostics already does testing for nagalase

Sushi said:

What tests are you looking for--nagalase? Seems like US customs is getting "sticky." Wonder what is up. When I sent blood to Redlabs I didn't get a kit from them, so it was one-way FedEx traffic from the US to Belgium. Wonder if that has changed too?

Any other customs reports?

Sushi

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Has anyone that feels worse on gcmaf and doesn't feel better once off it done followup C4a testing besides Leonora? I really think this might be a critical, overlooked clue as to what's going on.

Leonora said:

Hi Froufox!

Thanks I started out with 100 nanograms as IV for the first 5 times, after that I continued with IM for another 16 injections. Same dose each week. I also reacted strongly from the very beginning, but I was told that this was normal and because I'm a high responder in both genotypes. From what I know now the reaction actually depends on a mix of your genetic make up, PrPc test and number/type of co-infections. In my case the Gcmaf also opened the calcium channels which gives an array of very uncomfortable symptoms, and when the PrPc test is low the calcium channels don't get closed. There are too many misfolded proteins in the body which is due too a high copper level. I actually know several patients where the value is a lot lower than yours (0,5-4). The PrPc test is also very sensitive and can show a result that is too low if it has been transported and analyzed some days later.
Apparently, it's difficult to know the correct Gcmaf dose on beforehand, but I know that KDM is more cautious when PrPc is low. . It's like with the heart medication digitalis - the medication needs to be administered in a certain amount - either too little or too much is wrong.

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hi leonora, so are you saying that it is high coppyer levels that cause the calcium channels to open? i have always had low copper levels, and i think i know a number of others with me/cfs who also have low copper levels.

can you tell us what the "array of very uncomfortable symptoms" are?

best,
rrrr

Sushi said:

Just a note so no one freaks out--that should be 10 mg 3x per week! Or a lower dose daily.

Sushi

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ooooops. i meant 10,000 mcg, not 10,000 mg. i'll go back and fix the original post!

Sushi said:

Hi Leonora,

Again, nice to meet you here...but sorry you have had such problems. I was very interested in what you said about the intermix of elements that can effect your response to GcMAF.

KDM also told me to avoid any copper supplementation and talked about the calcium channels even before my test results were in. I am (according to RedLabs) a medium to low responder but my PrPc was in the low normal range (12.11). I started GcMAF at 50 ng IV then after a few weeks tried 100 ng but that was too much and I went back down to 50. At my last appointment KDM told me to stay at 50.

I have not had problems with inflammation (perhaps because I also take LDN and curcumin?), and perhaps because my PrPc was in the normal range I have had fewer problems with GcMAF (actually, I have had very few, other than feeling achy and totally drained around the time the macrophages might be peaking. This meant one or two days a week where I needed to stay lying down). I did, however feel a marked response (that something very different was happening in my body) from the first week and that has continued.

As far as co-infections, I had high titers of reactivated EBV, am positive for C. Pneumonia (not very high titers), and I don't know about hhv-6--I tested negative on antibodies but that does not seem to be a very reliable test. My nagalase test was done when it was still experimental and didn't yield results.

As I am in the States, I won't see KDM face-to-face soon, but I will make a phone appointment and I will continue to email him when I have questions about my treatment.

My symptoms seem to be exacerbated more by the B12 and nexavir injections rather than the GcMAF and these symptoms subside if I space out my injections and lower the dose.

This is very complex indeed! But we did "sign-up" knowing we were guinea pigs and some of the first to try GcMAF.

Best wishes and please keep in touch here. I really hope you get better soon.

Sushi

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Hi Sushi

Unfortunately, I don't know more than that there are several factors that might play in when it comes to Gcmaf reaction. I assume that less co-infections mean that you might encounter fewer problems when it comes to side effects. Regarding calcium channels, I think this is something that KDM didn't know about in the beginning until some patients got huge problems. I was told about this "theory" in January, a month after stopping Gcmaf. I actually just started with curcumin a few days ago, but as I am on a anti-histamine diet I can't really tolerate it. Interesting that you find B12 and Nexavir to worsen you symptoms. B12 relieves some of my brain fog and gives a bit more energy. I really don't know what effect Nexavir has, as I started with it at the same time as Gcmaf. I agree that we we did sign up as "guinea pigs", but had I known what I know now I would have never started. I was told that the treatment is absolutely harmless with less side effects than placebo (less than 10%). We see know that it may very well be the case for cancer patients, but not for ME/CFS patients.

froufox said:

Thanks for sharing your experience Leonora, thats all really interesting!

In my case I did 6 shots at the 100ng dose, before dropping to 1/4 or 1/5 as the side effects and inflammation just got way too severe. As with u, KDM also told me that my initial response was good and that things were working as they should (im heterozygote, so a moderate responder according to my VDR results), as i did also have quite strong flu like symptoms and other symptoms that were considered a positive immune activation response. But then things got a bit more crazy...

Yes it makes perfect sense that response depends on other factors like coinfections etc. Re the calcium channels not working properly, are u on Nexavir now to help with that?

Its interesting about the copper, i did read about the link with the cell surface proteins....ive always been suspicious about copper in my case as i fit some of the symptomatology, plus just intuitively aswell, although my copper results were normal, but i know that regular tests for copper are not accurate as copper, like mercury, is usually sequestered in the tissues. So thats something else that i will need to discuss with KDM. I do think tho that he should start people off on the lowest dose and then if they can tolerate that ok build the dosage up, rather than starting on the top dose. Also because it seems that the effects of GcMAF do build up over time and can linger for quite a while in the body.

Take care.

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Hi Froufox

Sorry to hear that you've also had a bad experience. At least you were told to stop/reduce in time... By that you maybe avoided getting even worse.
Regarding Calcium channels and prions, Nexavir does contain prions which in that sense is good for me. I don't know how it will contribute to closing the calcium channels though. I am on magnesium IV that has helped somewhat in closing the calcium channels. I will start Zink IV as well which might help.

Yes, the copper is apparently the bad guy - In ME bodies CU2 gets reduced to CU1 which the body can't take up in the blood, and therefor accumulates in the body. At a point in time the prions have taken up the copper and by that they have gotten misfolded. With time the misfolded prions are replicated, and the less normal working prions we get. Copper in the blood is not very accurate. Urine or hair analysis might be an option. I did a mineral test in urine which showed very high levels of copper.
Hope that explanation was understandable

Rrrr said:

hi leonora, so are you saying that it is high coppyer levels that cause the calcium channels to open? i have always had low copper levels, and i think i know a number of others with me/cfs who also have low copper levels.

can you tell us what the "array of very uncomfortable symptoms" are?

best,
rrrr

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Hi Rrrrr

High copper level causes the prions to get misfolded. A low PrPc indicates that you have a lot of misfolded prions which again can cause the calcium channels to open. If its very low, it's difficult to get them closed again... (which has happened in my case).
The symptoms I am experiencing because of this is insomnia and peripheral neurological symptoms (tingling, vibrating sensation, stinging) in legs/arms, as well as cramps, spasms, muscle weakness etc. I have also gotten extremely light sensitive, nauseous etc, but think this is related to the inflammation.
Copper level in the blood is not a good indicator as it's usually stored in the tissue....

spring, can you tell us if you feel any better 5 weeks after you have stopped your gcmaf? or if you still feel just as bad as when you stopped it? i ask because i stopped gcmaf 2 weeks ago due to feeling very sick and in those 2 weeks off gcmaf i have not gotten any better.

rrrr

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Hi Rrrr,

I took my last shot last wednesday, so officialy I'm pausing Gc Maf since today. So you are 2 weeks ahead of me. I will follow you with much interest too.
I must say I'm allready feeling a bit better. Maybe it was the interaction between Erythromycin (antibiotics) wich made me so bad last week. I read someone else had an experience like that after I phoned with Brussels to ask what to do. So maybe my reaction was premature. I will see. I got scared and I still think it was the right decision.

Hi Leonora

Thanks, yes luckily i did reduce the dosage in the end...its weird cos i did also experience some benefits too so it wasnt all bad, plus i do think my judgement was affected too and so i just continued taking my weekly dose and the effects definitely did creep up on me. Now that im taking breaks at least im giving my body a break from the side effects that i do get, of which the most difficult one is depression.

My understanding is that Nexavir is supposed to help close the calcium channels... if it does i hope that it helps u to recover from this long relapse. Glad that the mag IV is helping and good luck with the zinc IV too.

Sorry you have high copper, ive known about copper probs for a while, and how it can be a factor in some cases of ME/CFS though i havent organised a urine test yet. Hair analysis that i had done in the past seemed "normal" but ive been more suspicious over the last few yrs and now with the prion issue, it potentially could well be a factor for me too.

For anyone else interested in the copper issue, a pretty readable book on the subject is "Why Am I Always So Tired" by Ann Louise Gittleman. She explains copper toxicity problems quite well, inc in ME/CFS though the book was written a few yrs ago and obviously doesnt cover prions.

Leonora said:

Hi Froufox

Sorry to hear that you've also had a bad experience. At least you were told to stop/reduce in time... By that you maybe avoided getting even worse.
Regarding Calcium channels and prions, Nexavir does contain prions which in that sense is good for me. I don't know how it will contribute to closing the calcium channels though. I am on magnesium IV that has helped somewhat in closing the calcium channels. I will start Zink IV as well which might help.

Yes, the copper is apparently the bad guy - In ME bodies CU2 gets reduced to CU1 which the body can't take up in the blood, and therefor accumulates in the body. At a point in time the prions have taken up the copper and by that they have gotten misfolded. With time the misfolded prions are replicated, and the less normal working prions we get. Copper in the blood is not very accurate. Urine or hair analysis might be an option. I did a mineral test in urine which showed very high levels of copper.
Hope that explanation was understandable

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I just heard from another cheney patient that responded really well to gcmaf for about 3 months (as in almost cured) and is now worse than before he started. Cheney patients are not on nexavir and don't add b12 in mid-game, so that's not the cause in this case. Cansado felt better for several months, then plummeted. I'm sure i'm missing others that fit into this progression-regression scheme.

This is a mind boggling trend pattern so I finally did some analysis of the gcmaf spreadsheet today. If the progress-regression trend were purely due to die-off and elevated inflammation, the honeymoon period wouldn't seem to last nearly that long. I think the patients that are experiencing several months of benefits might already have a low baseline inflammation and aren't prone to that.

Let's take a look at the ones that start off with super high C4a:
froufox (6177) lots of side effects all around, alternating between brain swelling and better brain function
nabo (8542) lots of side effects, no improvement
Maria (4017) is experiencing worsened sleep, no improvement
Once Leonora reached a c4a of 10000 (starting from 1000), she was practically bedridden.
Once Cansado reached a c4a of 10971 (starting from 3283), her body had rejected the gcmaf, her leaky gut was back in full swing, and her immune system hyperreactive.

Now the ones that don't:
Sushi (2600) seems to be doing OK with it, although is beginning to experience more side effects.
Vojita (1000) responded well.
I (2800) had a neutral reaction (no side effects) but no benefits either, although that may have to do with the inferior quality and lost potency of the product.
Janey (112) had a positive response so far with zero side effects.
The entry right above Janey (1000) was well enough at one point to consider going back to work.
Filfla4 (2200) has gained more energy from it, but sleep is now being affected.
Berthe (1586) and went from practically bedridden to 20-30% but is now beginning to experienced bad inflammation.

I know it's a small sample size but let's just consider it for kicks. In fact, the only two data points (out of the ones that have entered their c4a levels) that fall out of this pattern are garcia and girlinthesnow. I have a feeling that both of them, if they re-tested now, would have much higher c4a counts.

So putting the two subsets of c4a together with Leonora's experience and Cansado (since they're the only one that reported baseline plus post-gcmaf c4a), the pattern seems to be that if you start off with a super high c4a, the inflammation is gonna continue skyrocketing & you will in all likelihood struggle with this therapy and not have a honeymoon period. If you have a low c4a to begin with, you may benefit from an initial honeymoon period on the drug on the scale of several months, but your inflammation may continue climbing past the point of beneficial (like Leonora who started out with 1000 and went to 10000) so that you begin to lose whatever potential for benefits you initially experienced.

I wonder if this is what's happening to Cansado, the cheney patient, and others. we won't really know until people get their c4a's retested. The only thing I could say for sure is that I think c4a should be monitored alongside calcitriol, vitamin D levels, and other basic panels.

Good work Mojoey!

It would be very interesting to show this to KDM or Cheney. I'm very concerned about the C4a issue, as mine is the highest on the sheet (8749) before starting Gc Maf. That's why I decided to consult KDM about stopping for a while after I got very bad last week and saw Leonora's C4a raise on Gc Maf. Now I'm allready doing better. Maybe it was the combination with Erythromycin. I hope when I see KDM in 5 weeks he will know more about C4a. I don't have proven co-infections, so I really wonder why my C4a is that high. I will update the sheet in a few days. I want to see how I will be doing next days first.

Spring

In my observations, c4a has very little to do with co-infections. c3a has been associated with lyme disease, but c4a more with inflammation in general. A lot of it seems to be determined by the HLA genotype which shows susceptibility to mold toxins, lyme toxins, staph toxins, and other toxins. My c4a was actually 28,000 when I was living in a house where I always felt poisoned and was not able to tolerate any medication whatsoever, including methylation and oxidative therapies. However, when my c4a was 2800 I tolerated gcmaf, UVB radiation with far less side effects.

I don't think this is the interpretation KDM will give you though. Good luck figuring out which way to go

Hi Joey,

KDM did a set of tests on 22nd June, 14 weeks in (Cyto inflammatory panel, perforin, CD57, IGA/IGM, sCD14) but unfortunately didn't retest C4a.

I started on Penicillin after the 8th dose of GcMAF but had run into problems at the 6th week with allergic reactions to nexavir and brain inflammation from GcMAF. I felt the GcMAF started to build up in my body after 6 shots and inflammation increased with each dose.

I'm now in the midst of the second round of Penicillin and have done a session of Gabbroral (amoebicide) in between. My problems with inflammation seemed tied to problems with my gut and secondarily brain as I've very high levels of sCD14.

My cognitive function is much worse than before I began the protocol, to the point where I feel somewhat autistic, unable to judge social situations, etc. Ability to learn and remember is also significantly worse, which is really quite frightening.

Hey girlinthesnow thanks for the clarification. I"ll correct my post above. I don't understand why he doesn't re-test c4a.... I really hope someone brings this up to him. He's not gun shy about reordering tests, and after seeing what happened with Leonora c4a you would think he'd be more prudent about it.

I'm sorry you're having such a rough time with this.