GcMAF trial

Sushi

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Would those of you who have been using/ordering this, and apparently having it get sent back (always? sometimes?) recommend even attempting to order it at this point?
Obviously it's quite expensive, I'd definitely have to sacrifice other things to pay for this - and it would be devastating to have it confiscated/returned at customs. (Seriously - they REALLY have the resources to waste on THIS?? )
I'd appreciate any info or advice.....
Thanks in advance.....
Lisa
I am also wondering if it is just BGLI's GcMAF that is getting turned back or all sources. I flew to Europe to see a doctor and brought it back in my luggage. But this is not possible for many.

Sushi
 
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As far as I can tell, Dr. Enlander's GcMaf study is 18 injections over 18 weeks - $5000 total.
My understanding is that it requires biweekly bloodwork: NK cells, immune panel, some other values.
His office has all the relevant info. It's possible that this may be a better option if you live in NYC.
I'm astounded by the costs of GcMaf in the US. I'm a patient of KDM in Belgium and I pay far less ...
 
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I was just down in NYC yesterday to see Dr. Enlander.
He currently has about 12 patients doing the GcMAF trial. So far (after five weeks) two are doing extremely well, a few others show some improvement, the rest are moving slowly. IRIS has been a factor for some and they have had to lower dosage. He is carefully monitoring kidney and liver function every two weeks.
Nagalese test results had just come back from Belgium. Seems most patients started with low levels that are now rising. (I'm very sketchy on this last point.)

I'm considering starting in September.
 

Overstressed

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Nagalese test results had just come back from Belgium. Seems most patients started with low levels that are now rising. (I'm very sketchy on this last point.)
Hi firefly,

Are you sure about this ?! Normally, it should be decreasing whilst on Gc-Maf...

Best regards,
OS.
 
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Hi OS,
Your version of it is likely the right one. I did not take careful notes on this when he mentioned it, so best to take my recollections with a grain or three of salt.
All best,
F.
 
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It looks as if further trials of GcMAF are planned for patients in Belgium, the Netherlands and the UK. I've been emailing them and the info I've got is rather confusing, but it may be worth contacting them if anyone is interested.

http://www.gcmaf.co.uk/info/

Jenny
Hi Jenny, Im new to this group ,Ive had ME for 28 years. Im very interested in any GcMaf trials . I tried the link you supplied but it is not functional. Do you know anything about the trial in UK? or do you have any contact info for any of the trials you mentioned?
 

Carla-nl

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Hi Self, Jenny and all, BGLI has a 2-3 day delivery service to the US and they work with any physician that's interested in Gc-MAF. So that can be your GP, Family physician, integrative medicine physician, alternative practitioner, anything like that.

Cheney has run a trial with their product and it is currently the only version of Gc-MAF commercially available with proper certificates for sterility and activity. See www.bgli.nl for info and ordering. (that is a link that works)

Click for Cheney's report Compassionate use of Gc-MAF in CFS.

Carla
 
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I have had no issues getting GcMAF through David Noakes. I have ordered vials three times since starting on June 21st. My ME-CFS Doctor ran my nagalse test, it was high enough to indicate the taking of GcMAF. My level 1.95. I just had a blood test sent to Belgium on October 2nd and am awaiting the 2nd result. Yes it is very expensive. Hard to tell what's happening to me. There are positive changes to report but I am not up to sitting a computer any further. Hope this helps. We are all fighting the good fight. Ground Hog Day and the beat goes on!

You Poor old Sod, you see it's only ME!
 

Sushi

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I have had no issues getting GcMAF through David Noakes. I have ordered vials three times since starting on June 21st. My ME-CFS Doctor ran my nagalse test, it was high enough to indicate the taking of GcMAF. My level 1.95. I just had a blood test sent to Belgium on October 2nd and am awaiting the 2nd result. Yes it is very expensive. Hard to tell what's happening to me. There are positive changes to report but I am not up to sitting a computer any further. Hope this helps. We are all fighting the good fight. Ground Hog Day and the beat goes on!

You Poor old Sod, you see it's only ME!
Hi Xandoff,

Curious, did you mean you sent blood to Belgium for nagalase? If so, wondering why not send to Health Diagnostics in New Jersey?

Thanks,

Sushi
 

Carla-nl

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Belgium (i think) collects their samples and has the Nagalase test done via the Dutch branch of Health Diagnostics.... Possibly even sent through from there to New Jersey.... Going straight to Health Diagnostics in New Jersey should be easier and cheaper.
 
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Hi Xandoff,

Curious, did you mean you sent blood to Belgium for nagalase? If so, wondering why not send to Health Diagnostics in New Jersey?

Thanks,

Sushi
My Doctor collects and sends it to belgium. It is $65.00 I believe. Maybe it's just how they do in in Masssachussetts? My insurance doesn't cover it.