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

Forebearance

Senior Member
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Great Plains, US
Oh you know Mary, I'm not actually sure. I think it is, but I take such tiny doses that it is hard to be accurate anyway. I should have just said my tiny doses!

I'm so glad your natural killer cells are up, Daffodil! I understand about the emotions. I think that someday when I am better I am going to have to feel all the grief that has been in storage while I just survive this illness.

Fore
 

Overstressed

Senior Member
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Belgium
Hi,

since I got ill, my lymphocytes are on the rise, but after a month on Gc-Maf, they took a dive. I don't know if that was just coincidence or not, but soon after that, my lymphocytes again settled in the high-normal range. I'm very concerned about that, afraid that would explode one day into leukemia or any other lymphocyte related cancer.

I want to know whether lymphocytes are high too within this patient population and if Gc-Maf did anything to that ?

Thanks,
OS.
 

Sushi

Moderation Resource Albuquerque
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Hi,

since I got ill, my lymphocytes are on the rise, but after a month on Gc-Maf, they took a dive. I don't know if that was just coincidence or not, but soon after that, my lymphocytes again settled in the high-normal range. I'm very concerned about that, afraid that would explode one day into leukemia or any other lymphocyte related cancer.

I want to know whether lymphocytes are high too within this patient population and if Gc-Maf did anything to that ?

Thanks,
OS.

Hi Overstressed,

What does your doctor say about this?

For me, my lymphocytes were a bit low and have stayed about the same through the course of GcMAF.

Best wishes,
Sushi
 

Overstressed

Senior Member
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406
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Belgium
Hi Overstressed,

What does your doctor say about this?

For me, my lymphocytes were a bit low and have stayed about the same through the course of GcMAF.

Best wishes,
Sushi

Hi Sushi,

you know how doctors are: as long as everything is still in the normal range, it's just fine. No matter what I say, the tendency is the lymphocytes are on the rise. Besides that, I'm experiencing huge worsening of my prostate. I took a while selenium and it appears selenium is VERY bad with respect to people with prostate problems. Yesterday I read an interview in a magazine, where urologist specialists explained that selenium and Vitamine E are not to be taken when you have prostate problems. XMRV, at least to me, made a lot of sense. Since I got ill, I started to have problems with my prostate. It got a bit better on Gc-Maf, but lately it worsened dramatically, with pain no in my groins and also near the navel.

Also, the specialists explained they think that prostate cancer and cervical cancer are related to eachother, in the sense they think it's caused by a (the same)virus. They stated that people (re)-infect themselves most probably. I wonder if there's another virus going around, besides HPV, that appears to be causing cervical cancer, or that a HPV also causes agressive prostate cancer.

Best regards,
OS.
 

ukxmrv

Senior Member
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Really sorry that your prostate is worsening OS. I was interested to hear the thoughts from your specialists on prostate and cervical cancer. We are plagued with both in our family but never saw them as possibly related (until XMRV of course).
 

heapsreal

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Hi Sushi,

you know how doctors are: as long as everything is still in the normal range, it's just fine. No matter what I say, the tendency is the lymphocytes are on the rise. Besides that, I'm experiencing huge worsening of my prostate. I took a while selenium and it appears selenium is VERY bad with respect to people with prostate problems. Yesterday I read an interview in a magazine, where urologist specialists explained that selenium and Vitamine E are not to be taken when you have prostate problems. XMRV, at least to me, made a lot of sense. Since I got ill, I started to have problems with my prostate. It got a bit better on Gc-Maf, but lately it worsened dramatically, with pain no in my groins and also near the navel.

Also, the specialists explained they think that prostate cancer and cervical cancer are related to eachother, in the sense they think it's caused by a (the same)virus. They stated that people (re)-infect themselves most probably. I wonder if there's another virus going around, besides HPV, that appears to be causing cervical cancer, or that a HPV also causes agressive prostate cancer.

Best regards,
OS.

Overstressed, have you had your estrodiol/E2 levels checked? High E2 can make or cause prostate issues, lab ranges arent very accurate, you want to try and get this value in the middle of the normal range, not too low or too high. Also a good testosterone and free testosterone level is important. They use to say testosterone was the culprit in prostate issues but now they have found its more related to estrodiol/estrogen/E2 and the conversion of testosterone to estrogen which can be controlled with medication and if possible losing weight can also reduce the enzymes which are stored in fat cells from converting testosterone to estrogen. Arimidex at 1/2mg twice a week is commonly used for high E2.

Yes when the xmrv thing came out and prostate was mentioned, i went about fixing this hormone issue. eg my E2 labs were 150(40-250), recommended to have these levels between 80-90, dhea did also increase my E2, have since found a low dose that helps my dhea levels without effecting my E2. Arimidex brought my levels down to 110 and then it seemed easier to lose weight and have dropped about 10kg since then. Measured my E2 which then was abit too low at 59 and probably came down this low due to the weight lose, so i have come off arimidex and feel with this change and able to keep losing weight, need to get E2 tested agin now off arimidex. A side note, high E2 can disrupt glucose metabolism and both go hand in hand with weight increases, losing weight helps reverse this or if having trouble can look into meds and supps that improve glucose tolerence and estrogen metabolism, then u will find weight loss alot easier, when the weight is down enough then u will no longer need the meds.

mm, does that make sense, best docs for this are antiaging type medicine docs. I hope you understand this, its helped me to get healthier.

cheers
 

Overstressed

Senior Member
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Belgium
Really sorry that your prostate is worsening OS. I was interested to hear the thoughts from your specialists on prostate and cervical cancer. We are plagued with both in our family but never saw them as possibly related (until XMRV of course).

Hi ukxmrv,


to me it looks like HPV is not the only virus causing cervical cancer. It looks like the agressive forms of cervical and prostate cancer are caused by another/different virus. Is that so within your family ?

Best regards,
OS.
 

Overstressed

Senior Member
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406
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Belgium
Hi Heapsreal,

thank you for the information! I will have to read it a few times, and make an appointment with an urologist through my family doctor. I'm curious if they will find anything.

Take care,
OS.
 

ukxmrv

Senior Member
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4,413
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London
Hi OS,
There has been no explanation for the high CC and PC in my family (plus the high cancers in general) sadly. None of the doctors seem to be connecting them because they are hitting both blood family and in-laws (and split over 3 countries). Plus we have other members with ME in both.
 

Overstressed

Senior Member
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406
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Belgium
Hi ukxmrv,

so sorry to hear that from your family. If it's hitting 'in-laws', sexual transmission might be considered, no ? But doctors will never admit, or assume such thing, if there's no scientific proof. That's why I was so surprised the urologist specialists being so open considering a viral cause, while there is no direct causative factor found. I appreciate this open discussion very much.

There is lot to learn, if you consider one and the same causative factor, leading to different diseases. I wonder how a virus genome will evolve when you have something like dna and rna. I think 'anciendaze' mentioned ones such a virus.

Best regards,
OS.
 

Daffodil

Senior Member
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5,890
i have been on gcmaf for about 3 1/2 months. i got some results today. it appears my relative CD4 count, which is more important than the absolute count, is low - which is disappointing (0.298 with reference range 0.318-0.602). the CD3 count is low too.

the absolute CD4 seems ok at 0.864 {reference range 0.500-1.500)

i hope this percentage improves over time.

cd4/cd8 ratio is normal at 1.2 (reference range 1.0-2.5)
 

Overstressed

Senior Member
Messages
406
Location
Belgium
Hi Daffodil,

perhaps your system is just fighting a virus/bacteria ? After all, your CD4/CD8 ratio is good, that's very important too.

Best regards,
OS.
 

Daffodil

Senior Member
Messages
5,890
hi all. i just wanted to report that i have been having chest pain. it started a few years ago when I began taking those antiretrovirals. i am sure it has to do with the AZT i took for over 2 years. this pain comes on whenever there is more inflammation as usual and also if i over-exert myself. it radiates down my left arm. it is especially bad when i do things that require lifting my left arm, such as hanging curtains.

i am becoming increasingly concerned about this. i have had an echo and CT which were normal...but that defintely does not allay my fears.

with the mitochondrial problems we have, and the amount of damage AZT does to mitochondra, i am thinking that i may have done something to my heart. i know of one other person who thinks her heart is damaged from ARV's she took.

i don't even think that any test will show the issue, other than examining the cardiac tissue itself. CFS is so different from any other disease and the harm it can do to tissue isn't even known.

the pain is not a stabbing pain, but more like an intense ache.

does anyone have a similar problem?

thanks
 

Sushi

Moderation Resource Albuquerque
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Daff,

When I went to a mitral valve support group a doctor pointed out the adrenaline takes the left arm path and that some of our chest and left arm pain might be do to inappropriate releases of adrendaline. Don't know if that is true for you but it is an alternative explanation.

Sushi
 
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