GcMAF trial

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Just an update on gcmaf

Hi everyone,

I don't know if you're already using GCMAF but I suggest that you see a doctor before becoming a lab rat to these people. I know how hard (almost impossible) is to find a doctor that treats/understands M.E. But I wrote an email to these people after Jenny's post on clinical trials. To my surprise they said that there were no clinical trials, that they only had two xmrv + people trying this drug and that I should be a "suitable candidate" (all this by email).

The person who answered my email, David NOAKES also told me that I could buy it straight away, no prescription needed. They seem to be selling it like "candies". When I asked about my concern about not being followed up by a doctor, David NOAKES told me that "doctors don't know anything" (I agree for some of them, but there are a few researchers out there who "might know" a little bit, right?), that I don't need any prescription to buy it :eek:, that I had to do my own research (well that was why I was contacting the company...) and I even got insulted by him!:confused: Just because I asked about my concerns.

Please be careful about this. Ask, read what well-known doctors have to say about this. I am as desperate as you are, after having tested positive but please think twice before trusting on any "miracle cures".

Best wishes.

Alex

ps: Here's the emails I sent and the response I got from David Noakes from GcMAf, Is this a professional way of treating queries?????

After David Noakes sent me a looong email with an extensive explanation on GCMAf, the fact that big pharma and doctors refuse to use this medication, but without saying why doctors would refuse their patients this "miracle cure", how I could get this medication, etc etc... I sent him the following reply :

From: ALEXANDRA <alex.maclachlan@free.fr>
Subject: RE: GcMaf
To: "'David Noakes'" <davidjnoakes@yahoo.co.uk>
Date: Monday, 21 March, 2011, 17:14

Ok so basically youre advising to buy a drug for which there were no clinical trials performed. Even if its true what you say, how can I trust this drug, wouldnt I need medical supervision? Has this drug been approved in Europe? You mention cancer and HIV but what about M.E.? No trials are being conducted then? We patients have to pay for a drug, and take the risk of being lab rats ourselves?

You see I agree with some of the things you say in your mail, but I find it very suspicious to get this message from a yahoo email address, trying to sell a drug, now of course you might be an honest person but I ignore who you are, and whose interests you are defending. In five years Ive seen so many unscrupulous people trying to get advantage from desperate patients, M.E. and fibromyalgia patients. And now with the xMRV I wouldnt be surprised things will even get worse for dirty businesses.

Is there a doctor I can ask for further information?

Regards,

Alexandra Maclachlan

I got the following answer afterwards:

De : David Noakes [mailto:davidjnoakes@yahoo.co.uk]
Envoy : lundi 21 mars 2011 22:29
: ALEXANDRA
Objet : RE: GcMaf

Yes there are, but you need to want to do this, and you clearly don't. You are not a suitable candidate for self administration. If you were, you would already have done your own research, and none of this would be new to you. YOU'RE ACTUALLY AN IDIOT TO ASK THESE QUESTIONS.
You need to know what you are talking about before you get involved, not afterwards.

David Noakes.

Now I don't know you people but I wouldn't trust guys like this one, Does anyone have a similar experience???? Now with XMRV I wouldn't be surprised to see bastards out there selling miracle cures that could even make you worse! This guy is talking about Self administration!!! Patients buying this stuff and administering it themselves!!! please BE AWARE!!
 

muffin

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Thanks Alex for posting the above info. I too was looking and just about to bite the bullet on this one BUT, with an email like that one and the rest of the info on this product, well, doesn't sound like such a good idea.

Again, thank you for taking the bulls by the horns and hitting this guy. We so don't need more snake oil salesmen than what our shrinks are already providing for us.
 
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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.
 
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I have been looking at the cost of GcMAF. BGLI sells it at about $150.28 per shot plus plus shipping from the Netherlands.

I wonder why the Belgium pharmacy www.GcMAF.eu is selling their version of GcMAF for less,
at $119.40 US dollars a shot which includes shipping.
you can confirm that by checking their website online at:
http://www.gcmaf.co.uk/info/index.php?option=com_content&view=article&id=106&Itemid=48
and they guarantee that on arrival it will be good, active GcMAF.
Does anyone have any experience with that pharmacy? Thanks, Joanee
 

Sushi

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Hi Joanee,

The cost of GcMAF varies a great deal with the supplier--and I don't think the varying cost reflects the quality of the product. I have not used the UK source, but have obtained GcMAF through Prof. K. De Meirleir in Belgium. He uses neither of these sources (he uses another certified, quality controlled lab) and I pay 35 Euros per 100 ng vial.

Best wishes,
Sushi
 

Andrew

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Is there a list some place of which cancers it's been tested with?

Also, if Dr. Enlander is able to get it, does that mean we can try it in the U.S.?
 

Nielk

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Is there a list some place of which cancers it's been tested with?

Also, if Dr. Enlander is able to get it, does that mean we can try it in the U.S.?
Dr. Enlander is getting it from the same supply that KDM is using.
Dr. Enlander actually joined KDM's study and they are working together.

Someone mentioned: 18 shots for 18 weeks - costing $5,000. That is correct.
He already started using it on patients and reports that it is helping most.

If you live in the NY area and are interested, you can e-mail him at:denlander@aol.com
I will be starting it next week.
 

Nielk

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Is anyone here on the GcMAF trial with Dr. Enlander in NYC?
I would like to hear how it is going for you so far?

Thanks,
Nielk
 
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Patient of Dr. Enlander on gcmaf

I am a long time patient of Dr. Enlander. I have been taking gcmaf since May 2011. Before this treatment i had been on valcyte for 6 months and on antibiotics and methylation cycle for 5 years. Before valcyte I was housebound and bed-ridden 75% of the time. After 6 monthds of valcyte I was able to leave my home independendly occasionally for 10 minute errnds and bed bound for half the day.Before taking gcmaf my nagaese levels were 3.3 I have been on half dose injections weekly of gcmaf with nexavir and the results have been astounding!!

Positive effects of gcmaf were immediately experienced. After 2 weeks i expereinced an IRIS reaction which lasted for about 2 weeks with many neurological and physical reactions which left me debilitated. Since then..

For the first time in 10 years i went on vacation. I no longer need to rest for a few hours every day. I am able to run errands and go shopping independently. I have for the first time in many years, gone to movies, social activities and even hosted a barbecue this weekend!!

Gcmaf therapy has completely changed my life. Dr. Enlander has seen similar changes in some of his other patients who also are participating in his trial.

iu am hoping posting my experiences with Gcmaf will be helpful to others who are interested in learning about other patients expereinces.
 

Nielk

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I am a long time patient of Dr. Enlander. I have been taking gcmaf since May 2011. Before this treatment i had been on valcyte for 6 months and on antibiotics and methylation cycle for 5 years. Before valcyte I was housebound and bed-ridden 75% of the time. After 6 monthds of valcyte I was able to leave my home independendly occasionally for 10 minute errnds and bed bound for half the day.Before taking gcmaf my nagaese levels were 3.3 I have been on half dose injections weekly of gcmaf with nexavir and the results have been astounding!!

Positive effects of gcmaf were immediately experienced. After 2 weeks i expereinced an IRIS reaction which lasted for about 2 weeks with many neurological and physical reactions which left me debilitated. Since then..

For the first time in 10 years i went on vacation. I no longer need to rest for a few hours every day. I am able to run errands and go shopping independently. I have for the first time in many years, gone to movies, social activities and even hosted a barbecue this weekend!!

Gcmaf therapy has completely changed my life. Dr. Enlander has seen similar changes in some of his other patients who also are participating in his trial.

iu am hoping posting my experiences with Gcmaf will be helpful to others who are interested in learning about other patients expereinces.
Wow! That's so great to hear that you are doing so well now. You must feel like you are born again. Are you still on the trial or did you finish the 18 shots?
I was going to go on it too but, my Nagalese level came back as 1,0. Dr. Enlander sad that this result is inconclusive.
I'm happy for you and thanks for reporting. Please keep us posted on your progress.
Thanks,
Nielk
 
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Good to hear that you are doing so much better!!! Would be iteresting to know what kind of symtpoms you experienced from Gcmaf during IRIS. Have the treatment been symptom free after this? If understand you correctly you started to improve app. after 5 shots or so?

Enjoy the new activities:)

Samina
 

Dan_USAAZ

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Hi Jeanne,
I am very happy to hear about your improvement. That is great news!
Could you tell us what type of injection Dr. Enlander uses for GcMAF; intravenous, subcutaneous or intramuscular?

Thanks and best wishes for continued recovery.
Dan
 
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GcMaf

The injection is intramuscular with a very fine needle.
We are seeing patients of David Bell who has retired, David will attest as to the severity of the ME/CFS prior to treatment, and his astonishment to their improvement. My Friend Charles Lapp has not as yet tested the GcMaf treatment method. Both Charles and I are involved in the FDA Ampligen study.
We initially performed nagalase tests prior to GcMaf but had problems with the lab quality control. So we have suspended for the moment nagalase assays. If patients have nagalase tests performed, ask for actual results of quality control tests
Derek Enlander MD
New York
 

lobba123

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since we have only redlabs and europeanlaboratory.nl making the nagalase test what do you suggest?

use both labs to double check?
i was suggested to do this by one of the main researcher involved, he didnt like the way results are reported, no clear name of person responsible for the test, just a sign tht can be whoever, no method used for the test.....

The injection is intramuscular with a very fine needle.
We are seeing patients of David Bell who has retired, David will attest as to the severity of the ME/CFS prior to treatment, and his astonishment to their improvement. My Friend Charles Lapp has not as yet tested the GcMaf treatment method. Both Charles and I are involved in the FDA Ampligen study.
We initially performed nagalase tests prior to GcMaf but had problems with the lab quality control. So we have suspended for the moment nagalase assays. If patients have nagalase tests performed, ask for actual results of quality control tests
Derek Enlander MD
New York