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

Daffodil

Senior Member
Messages
5,875
hi all. do you guys think i should stop famvir? its really making me sick. i know that could be a good sign but am i gonna be worse for a year now? ughhh i dont want to go through that. i was doing OK on the GcMAF and now feel like i am dying again! this is so weird.

i am starting to have my doubts about feeling sick for 6 months and then getting better on antivirals. it just never happened for me before...i just get the sick part

nothing about his illness ever makes sense.
 

Symptomatic

Senior Member
Messages
197
By the way, I have read some really interesting research around curcumin working thru the VDR and am just wondering if this might be why I get this kinda instant reaction, just like I do when I take the GcMAF? I have no idea why I seem so reactive. I would love to get this inflammation down.

Below are parts of some posts I have made in my KMAF thread. This is only my experience, YMMV. I took 600mg curcumin 2X/day from December 2011 through the end of July 2012.

My doctor also wanted me to try curcumin, which I started in December 2011 (. My 1,25D and calcium headed back up through the spring/summer, and I stopped it back in July. I feel strongly that since curcumin acts at the VDR, and I clearly have issues there, that it was interfering with Benicar's action (note: my doctor does not agree with this, he feels I was "detoxing", but I don't agree and am not willing to have hypercalcemia and all the symptoms that go with that). I am waiting for a few months before retesting 1,25D and calcium, as it took 3-4 months to get it down when I started back in 2011.

Yes, curcumin should be anti-inflammatory. My CRP didn't budge while I was on it, and as mentioned, my 1,25D and calcium both started going back up. As an aside, my sister's acupuncturist suggested curcumin to her as well, as she has Hashimoto's. She doesn't have my 1,25D problems, and never had high calcium in the past. After 6 months on curcumin (different brand than mine), her calcium spiked high. I believe we have a genetic VDR thing going on here, as I don't think hypercalcemia is a normal response to curcumin.
 

vli

Senior Member
Messages
653
Location
CA
Consider or look into really low doses of something like methylprednisolone eg 1mg. Its low enough not to supress immune function and may actually improve immunity and ease that inflammation enough to hopefully make things abit more comfortable. It will also give u abit of energy too??

heaps hv u ever used methylprednisolone urself? *all* my previous experiences w/ steroids (incl. pred) hv always been bad.
 

suzanne

Senior Member
Messages
178
Hi GcMAF, Heaps and Sympto,
Thanks for giving me some things to think about. In terms of the anti inflamm : so many of the natural supplements cause me symtpoms- NAC and ALA are two of them, so wont be going there. I have read about the virtues of vit E and Co Q 10- also flax seed oil, so may try them when I recover- I am SO sick from the curcumin.

As to the VDR issues, I know I have a double genetic mutation on VDR taq ++, so maybe this explains my extreme response with both curcumin, benicar and GcMAF. I am a bit disappointed as it is seemingly hard for me to find a natural way to bring down inflammation without triggering just more symptoms. Sigh

Thanks for the comments guys, very kind and appreciated.
 

suzanne

Senior Member
Messages
178
Heaps
I also meant to add that i have tried the cortisol pathway, and react really badly to even a miniscule amount of hydrocortisone...same with isocort. Damn it, so tricky. That said, my cortisol levels are not too bad.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
This is a bit off topic, but you all know I am struggling to get my inflammation down so I can try Gcmaf at a smaller dose.

I have done a lot of research and it all keeps pointing me back to trial curcumin and perilla oil. I have tried the aller tame before but when all the ingredients are mixed I cannot work out what I am reacting to- it gave me increased headaches and itch ? maybe boswellia but not sure.

To the point- I have trialled the curcumin today - I opened a 500mg capsule and divided into 10- I took 50mg this morning. All day I have had massive headache and it seemed to come on soon after the curcumin. Anyone else heard of this? I am going to wait another day to settle- then halve the dose again and see if the curcumin really is at play here.

By the way, I have read some really interesting research around curcumin working thru the VDR and am just wondering if this might be why I get this kinda instant reaction, just like I do when I take the GcMAF? I have no idea why I seem so reactive. I would love to get this inflammation down. If this fails I will try omega 3 (plant based next) either perilla or flax seed, but recent research seems to be supportive of perilla given the luteolin. I have taken luteolin as Neuroprotek and that gave me massive headache too- not sure what the perilla will do_ grr this is so frustrating

Suzanne,

You are doing some great research. Can't remember, what are your VDR genetics--it would be interesting to compare with others. Course we'd have to trust the accuracy of the test....

Pointing out differences, may help us to get more understanding. It is very interesting what GcMAF Australia said above too.

I take about 2000 mg of curcumin a day (don't take D) with no problems and also tolerate GcMAF pretty well. My VDR is ff, BB. (RedLabs) That is one of the worst.

Sushi
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
suzanne

I was trying to remember this for inflammation and someone just reminded me: anatabine.

http://anatabloc.com/home/

I haven't used it but my doc gave it to another patient for inflammation. Read and see what you think.

Oops! I see that the anatabloc has some D3 in it, but maybe you could just try anatabine.

Sushi
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
hi all. do you guys think i should stop famvir? its really making me sick. i know that could be a good sign but am i gonna be worse for a year now? ughhh i dont want to go through that. i was doing OK on the GcMAF and now feel like i am dying again! this is so weird.

i am starting to have my doubts about feeling sick for 6 months and then getting better on antivirals. it just never happened for me before...i just get the sick part

nothing about his illness ever makes sense.
daff you are on 500mg 3 times a day, u have room to back down without stopping, just try 250mg twice a day??
 

Daffodil

Senior Member
Messages
5,875
hi heap:) well...i dont know if taking less is a good idea but what i have decided to do is stop it altogether. i was doing better with GcMAF and i just get the feeling that the famvir might be interfering with it. since i seemed to be improving somewhat, perhaps the active herpes viruses will take care of themselves at some point. I am due to start antibiotics for my gut in 3 weeks...the famvir might just complicate matters.
xoxoxoxox
 

suzanne

Senior Member
Messages
178
Wow, I am learning more and more each day about the nature of our illness and the amazing research being done around the world.

Thanks so much Sushi, GcMAF Aus, and Heaps.

There is definitely something happening for me with the curcumin - the 50 mg dose (tiny in relative terms) was taken nearly 2 days ago now and I have felt incredible levels of nausea and head pain ( still) but I think it maybe now starting to wane- she hopes:) I realised ages ago that there was no choice if I was to fight this illness I would have to be brave enough to be a guinea pig. Not for one moment did I really know what that meant and little did I realise that there would be years of pain due to side effects and exacerbation of symptoms, and sometimes very minimal gains.

Sushi, your research and knowledge is amazing. I have not heard of the anatabine citrate before but am SO intriqued by this new research. I saw the following anecdotal snippet on a anti aging web site and couldn't resist posting it ( see below if you can be bothered).

I am having a hard time finding a source that doesnt have vitamin D included as part of the merketed stuff- any one got any insight as to where I might get the 'raw' ingredient or will I have to trial the one with the packaged up vitamins added? I think a month is going to cost me over $200 US and that doesnt include postage? But I need to poke around a bit more to find the best supplier here to Aus. If any of you have any clues about this please pass along to me as I am struggling in the brain department at the moment. I am sure my brain is inflamed, even though that sounds an odd thing to admit.

I am off to bed (it is really late here) but I just got hooked on this new stuff called anatabine.

In terms of the VDR mutations. I got tested a few years back by Yasko. It showed that I have a VDR Taq ++ and VDR Fok +-. I am not sure how this relates to your test results Sushi? What I do know is that the GcMAF knocks me for a cropper...but if I can sort the inflammation, then the 4 weeks I was on it, was actually the best 4 weeks I had had in quite some time...I live in hope of being that bit weller :)...don't we all?

The snippet about the guys experience with anatabine:
Anatabine citrate is an alkaloid found in plants of the Solanaceae family, including peppers, tomatoes, and tobacco. It is known to be a monoamine oxidase inhibitor (MAOI), which basically means it makes you feel Mill Valley mellow, but more importantly it suppresses inflammation, even low levels of which you may not be aware. As noted above, inflammation is bad, but these little pills, which you take just three times a day by letting them dissolve in your mouth, are potent when it comes to putting an end to that particular consequence of aging. When I first heard a pitch for this stuff, I assumed it was a stock tout (its vendor is a public company, whose stock symbol I won't mention here; should you choose to invest, you'll be able to figure it out in a few moments on your own). Then I began to hear reports of interesting results from people I respect, which motivated me to order three months' supply of the unflavoured tablets. The pills are tiny, but the price is a big gulp—on the order of a hundred Yankee dollars a month if you go for the maximum dosage (I opt for half that).

But here's the thing, which was totally unexpected: within 48 hours of taking these pills, all of the “senior brain fog” I had been accustomed to as part of aging simply went away, as best as I can evaluate it from introspection. In terms of functioning of short-term memory and prompt cognition, it's like I'm thirty-five again. Now, I am very aware of the seductive pull of the placebo effect, but I note that this cognitive effect was entirely unanticipated and only after I experienced it myself did I discover that others had reported it.
As to the anti-inflammatory part, that seems to work as well. In January of 2012 I had hyper-extended my left calf dropping stuff into my chariot at the hypermarché, and while it “got better” over time, it wasn't really quite right. Well, until I started taking these pills, after which it was completely fixed within two weeks. Is this probative evidence of effectiveness—of course not! Does it mean that if I had a long-nagging injury and was fretting over “senior moments” I'd be inclined to give it a try? Of course I would, and I did, and I'm glad I did. I suspect that as the customer base increases the price will fall, but even at the present (outrageous) price, I consider the benefits worth the cost.
This stuff is very expensive, and the claims for it and the marketing set off almost all of my scam alerts. But the incontrovertible fact is that it seems to work for me, enough that I've re-ordered. I'd say, if you can afford it, order a single bottle, take the pills at the minimum rate of three a day, and if they don't change your life within a week or two write off the experiment and move on.

More from me soon- help me if you can on the best source of this stuff

warmest, and thanks heaps
Suzanne
 

suzanne

Senior Member
Messages
178
Oh, and Sushi...I have no idea how you can tolerate all that curcumin. Amazing that we seem to respond so differently. I just reckon htere may be something about our VDR receptors at play for sure. I also know that I am one of those ones that finds D3 impossible to take- just a tiny dose of 1000iu makes me fell really ill. Interesting , eh?

It would be good to try and figure out how our different VDR mutations align with our experiences on these VDR type products. I have mentioned before that I was once well for 2 years when I did the MP, so I reckon there is defintely something in all this VDR and immune system science.

Off to bed for me. Talk again soon.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
suzanne &
GcMAF Australia

I bet GcMAF an compare our VDR results for us! (see above). I can't remember how + & - correlate with capitals, but TAQ corresponds to BSM1 (the B in my results) and I'm told that the FOK is the more important of the 2, so a + - on FOK must be a medium. MY ff is the worst. But then, to complicate things, RedLabs and Yasko came back with different results on the same patients!

Re: Anatabine, there seems to be a patent on its use held by Rock Creek Pharm. They make Anatabloc and CigRx (to help stop smoking). Both contain anatabine, but I can't seem to find out how much is in the Cigrx, though the only other ingredient in that is yerba mate. http://en.wikipedia.org/wiki/Anatabine

Anatabloc seems to universally sell for $100 for 200 lozenges--at 3 - 6 a day, it is expensive!

RCP006 is a synthetic form of anatabine. They are busy trying to make this into a drug. See

http://www.rfdn.org/inflammaging.html

Sushi
 

Symptomatic

Senior Member
Messages
197
I tested Taq +/- and Bsm +/- via 23andMe (they are two separate SNP, Taq at rs731236 (position 48238757) and Bsm at rs1544410 (position 48239835)). Although I inquired prior to testing and 23andMe told me the Fok (rs10735810) would be included, it wasn't. I have an inquiry in with them about that.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I tested Taq +/- and Bsm +/- via 23andMe (they are two separate SNP, Taq at rs731236 (position 48238757) and Bsm at rs1544410 (position 48239835)). Although I inquired prior to testing and 23andMe told me the Fok (rs10735810) would be included, it wasn't. I have an inquiry in with them about that.

Correct that Taq and Bsm are different but I think some labs found that the results were almost always the same for the two, so test one or the other. At least that is what I remember reading on Yasko sites.

Too bad they didn't test Fok!

Sushi
 

Symptomatic

Senior Member
Messages
197
suzanne - be aware that some folks are super sensitive to plants in the Solanaceae (nightshade) family, and I believe they are generally considered to promote inflammation - may want to do some Googling to see what you find.
 

Symptomatic

Senior Member
Messages
197
Correct that Taq and Bsm are different but I think some labs found that the results were almost always the same for the two, so test one or the other. At least that is what I remember reading on Yasko sites.

Too bad they didn't test Fok!

Sushi

I think you are right about the two paralleling each other.

I'm really perturbed about the Fok, here's the response they'd sent to my original question:
"Thanks for providing me with this info. It appears that the Mendel Family aren't on the recent platform which includes rs10735810. My apologies for the confusion. rs10735810 is however included in our current genotyping platform. If you purchase a kit, you will receive a genotype at rs10735810."
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I think you are right about the two paralleling each other.

I'm really perturbed about the Fok, here's the response they'd sent to my original question:
"Thanks for providing me with this info. It appears that the Mendel Family aren't on the recent platform which includes rs10735810. My apologies for the confusion. rs10735810 is however included in our current genotyping platform. If you purchase a kit, you will receive a genotype at rs10735810."

I got Fok and Bsm tested at RedLabs--not expensive if I remember correctly.

Sushi
 

suzanne

Senior Member
Messages
178
Interesting debate about the different VDR mutations. It complicates our capacity to compare our experiences when the tests seem to measure somewhat different genes - not to mention that the results don't seem to be the same when measured by the labs! That is alarming.

Perhaps GcMAF maybe able to help us out with how we might be able to help us with the VDR genetics comparisons and make some better sense of that?

As to the anatabloc, I have now ordered one bottle to see if it helps or not. Just a stab in the dark really as nothing else is helping get the inflammation down. @ symptomatic: Thanks for the tip about the Solanaceae (nightshade) family. I have never noticed a difference when I include or exclude these vegies, so who knows what my response will be.

Unfortunately, I can't get the anatabine without the D3 component so have to out up with the little bit they add in (@ Sushi: you were spot on with your comment about the patent).

I figure the amount of D3 is pretty miniscule ( I cannot recall now if it was 33 iu or 333 iu- I will look it up again in a moment)...perhaps no more than I would get if I had a bit of extra sun that day- only difference being that I react worse to the D3 than I do to the sun! I guess I will just have to see how I go- I will start on only 1/2 lozenge once or twice a day and see if I react badly, before I get brave enough to titrate up to 3 or more a day. I notice that they say no more than 6 a day. I read some further reviews of this product when I was poking around and a number of reviewers commented on a neurological / memory clarity of thought improvement. Interesting.

BTW, for those interested, not all companies send this product to Aus. I ordered mine thru Apple Health. $99.95 for 200 lozenges and about $40 for shipping. Not sure if I should have ordered the tablets or lozenges- I went with lozenges as I am not sure that I process from my gut all that well. Kinda expensive but I would do anything to get the inflammation down. Not to mention the itching and migraines that accompanies the inflammation. Grr.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
suzanne
Sorry that you have to pay $40 for shipping! GNC in the US stocks it and you can get it for $95 ($15 for their gold card and then it is $79). I see that GNC is in Aust too but they don't seem to stock it. Maybe you could call them and ask if they will?

And yes, anatabine is under trials for Alzheimers.

I think the Taq and Bsm SNPs dovetail, but that still leaves the problem of different results from different labs.

Sush
 

suzanne

Senior Member
Messages
178
The downside of living down under :( Pretty good weather tho (as you know)

It seems like the price of this is almost fixed. I have gone to the GNC site but they specify that they don't ship to Aus. If I happen to do well on the supplement I will try and find lower shipping price.

Some interesting ( and mixed) reviews of this on amazon. Some people are so impressed they instantly buy shares in the company- others it seems to have no impact for or causes them some side effects that appear might be related to the MAO inhibitor effect? It may be that I would need to be very careful to not have foods high in tyramines when on this supplement. Just a thought.

Thanks for your leads and interesting perspectives. Stay tuned. The stuff will arrive in about 5 days.