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

[Sushi]

I just got back my 3rd nagalase test and wanted to report. I have been taking GcMAF a bit over a year. The pre-GcMAF nagalase test failed as it was experimental then so I don't have an initial reading. After about 6 0r 7 months on GcMAF my nagalase tested at 1.6. A couple of months later, 1.2. My last test just came back at 1.0, so I seem to be following the expected pattern.

Best wishes,
Sushi

 

[Daffodil]

thats awesome, sushi. just awesome!

 

[bbs]

Hi whu,

I've been taking injected GcMAF for about a year and have had a lot of improvement--maybe 30%. Some I know have had more, yes, some up to 70% functioning and leading fairly normal lives.

The statistics I have been given for injected GcMAF are that about 65-70% respond with some degree of improvement--more or less for each individual. Some don't respond at all and some don't tolerate it at all. This may be due to certain co-infections.

We are no longer keeping up with a spreadsheet so anything you find there is unlikely to be current. It seems true that you need to take it for a long time. People I know started getting the most improvement after 6 or 7 months. Also, many have switched to lower doses to prevent inflammation.

I can't comment on MAF314 but I am really glad you are doing well on it.

I don't think either of these are going to be a cure but are proving very helpful for a pretty good percentage. It is a tricky protocol to get dosing and other supporting medication and supplementation right, so I'd advise doing it with the help of an experienced doctor.

Thanks for posting. Let us know how it continues to go for you.

Best wishes,
Sushi

Our daughter (18) took two full rounds of GcMaf shots (32 weeks I think.) ($10,000 +)
We saw a great improvement in her cognitive ability and her quality of life.
When we came to the end of the second round we asked Dr. Enlander what the next step was to be.
He has never replied. No blood work. No follow up. No nagalase testing. Nothing. Frustrating to the max.
She was not followed closely while on it. But we saw a vast improvement. Since stopping she has had a rather strong decline and has developed Chronic Intestinal Pseudo Obstruction and Bacterial Overgrowth. We are waiting to see Dr. Flores at the Floating Children's Hospital in Boston. We are left hanging as to the next step.

 

[Ronan]

I just got back my 3rd nagalase test and wanted to report. I have been taking GcMAF a bit over a year. The pre-GcMAF nagalase test failed as it was experimental then so I don't have an initial reading. After about 6 0r 7 months on GcMAF my nagalase tested at 1.6. A couple of months later, 1.2. My last test just came back at 1.0, so I seem to be following the expected pattern.

Best wishes,
Sushi

Good news Sushi... nearly in range now. I am expecting a new result back as well but it will probably be another few weeks yet.

On a side note, i just started Caprystatin yesterday and have major head fog today. Could this be Candida die off? I have been feeling a bit better over the last few weeks and looking less pale.

 

[Sushi]

If you have candida and treat it it can well cause die off which can manifest as the general "yucks" and brain fog too. Still you need to get rid of candida if you have it. It is hard to keep at bay.

Are you still at the same GcMAF dose?

Good luck!
Sushi

 

[Ronan]

Yep, still taking 50ng once per week. I tried doing full dose again about a month ago but i was getting a bit of a runny nose so thought if was probably a bit too much inflammation being caused. I seem to be doing a bit better on the lower dose now.

 

[Forebearance]

Daff, chest pain is one of my symptoms of poisoning, if that helps.

That is great, Sushi!

I'm so sorry, bbs.

 

[Daffodil]

maybe there is something wrong with the 100 ng dose. it seems i hear better stories from people who are taking smaller doses...

maybe you shouldnt take 100 ng even if you can easily handle it..?

 

[gu3vara]

Where do you test nagalase levels guys? It's Health Diagnostics in the US right? I'm ready to do it, I could have a nurse draw the blood here at home but is it complicated to send the blood, does it have to be on ice or anything else??

Thx!

 

[Daffodil]

hi gu3vara. yes its now called vitamin diagnostics
http://www.europeanlaboratory.nl/

i got instructions to send with ice pack and centrifuge and separate plasma etc...but in some places i read to just send whole blood. perhaps someone else can clarify.

 

[Sushi]

Where do you test nagalase levels guys? It's Health Diagnostics in the US right? I'm ready to do it, I could have a nurse draw the blood here at home but is it complicated to send the blood, does it have to be on ice or anything else??

Thx!

Yes, Health Diagnostics. Your doc needs to order it by faxing a requisition on his/her prescription pad with his/her medical license number printed on it. Then sign the requisition that comes in the kit.

They send the kit with a prepaid, overnight FedEx mailer with an ice brick enclosed. It needs to be centrafuged for about 10 minutes and separated into the tube they provide, then frozen, (also freeze your ice brick) then you can call Fed Ex to pick it up or take it to Kinkos or another FedEx pick up place. As long as it is frozen, it doesn't have to be sent the same day but you can't send it on a Friday!

Best to take it or have it picked up late in the afternoon as the FedEx planes fly at night and you want it as cold as possible.

Hope that helps.

Sushi

 

[gu3vara]

Thx Sushi, only need a doc to prescribe it now!

 

[Sushi]

Thx Sushi, only need a doc to prescribe it now!

A chiro can do it also.

Sushi

 

[Daffodil]

Hi Sushi. So you freeze both plasma and serum? How long does it take to freeze? I will be doing it at my doc's office and have to wait around until it freezes....

Thank you!

 

[Sushi]

Hi Sushi. So you freeze both plasma and serum? How long does it take to freeze? I will be doing it at my doc's office and have to wait around until it freezes....

Thank you!

No, they should separate it for you and just give you back the tube of serum or plasma or whatever it is. Go to the doc with an icepack, put the pack in the box with your sample to keep it cool, then go home and freeze it. Then FedEx it when it is frozen.

Sushi

 

[Daffodil]

Thanks again!

 

[alice]

Regarding Kit Tests. Our hospital here where I live has a special lab connected with the hospital that handles only outside labs where samples have to be shipped out. It is just great. I first called another lab in town and they told me about the hospital lab. I had to call the hospital for an appointment and then went in with my kit and my credit card. The tech drew the blood and took care of the ice pack and any other plasma preparations AND the FedEx shipping.. This was a lab test that I had to pay for. I imagine that if it is a test Medicare or private insurance pays for, then they will take care of the billing too, but don't know for sure. I don't think the hospital billed me for the blood draw etc. which is probably billed to Medicare.
Don't know how many hospitals have that sort of service. I live in a medium size town in CA.

Preparing lab specimens and getting them shipped is a huge hassle and I am grateful for this service. My ME/CFS doctor lives in another town so finding someone to do the blood draw was a problem for me - but it worked out great..

 

[xrunner]

I just got back my 3rd nagalase test and wanted to report. I have been taking GcMAF a bit over a year. The pre-GcMAF nagalase test failed as it was experimental then so I don't have an initial reading. After about 6 0r 7 months on GcMAF my nagalase tested at 1.6. A couple of months later, 1.2. My last test just came back at 1.0, so I seem to be following the expected pattern.

Hi Sushi,
That's a nice trend. I'm glad for you. Have you noticed a direct correlation between the Nagalase results and your general health/activity levels?

 

[Sushi]

Hi xrunner,

That is a good question but the answer is complicated. Yes, my nagalase has slowly gone down, and yes my activity level and feeling better have slowly increased.

But, there is a long lag between when the blood is drawn for the test and when you get your results and also a trend for patients to feel better when they have lowered or stopped GcMAF because it causes inflammation and quite probably B cells also need to repopulate.

So while I have found a general correlation, some have not...and others continue to feel better immediately after a GcMAF shot--perhaps their bodies are not producing so much inflammation.

It is another wait and see thing as not enough patients have taken GcMAF a long time and then gone onto a maintenance dose and then observed symptoms for a long time and had re-testing.

Best I can tell you for now,
Sushi

 

[Daffodil]

i'm worried that about this hairless i am experiencing on the GcMAF. maybe it is targeting some healthy cells too, like chemotherapy does? how can we be on this forever? maybe we cannot.