Serg......I hope you improve 100% whatever he gives you. Truest Wishes for the BEST LUCK!!!!!
sheba
GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
- Thread starter Sushi
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Serg......I hope you improve 100% whatever he gives you. Truest Wishes for the BEST LUCK!!!!!
sheba
Does anyone know anything about how to store GcMAF? I was told to freeze it but im a bit worried they made a translation mistake. When they gave it to me in Belgium it was in a liquid form with a ice bag to keep it cool. She said it should be frozen and taken out 10 mins before injecting it. Now that i have it in the freezer it is frozen solid, so i'm just wondering she may have meant to keep it in the fridge? Anyone know for sure what i should be doing with it?
Sushi
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I just looked at the genetic test results done by Yasko on 47 patients (Testing the VDR). Assuming her tests correlate with what RedLabs are doing, the results of this small sampling is interesting. I am brain fogged, so it is likely I made some mistakes 
--I'll check it later--but here are the percentages that showed up for the different Genetic combos:
bb/FF = 6% -- the best
BB/ff = 4% -- the worst
bb/ff = 6% -- mixed
BB/FF = 15% --mixed
Bb/Ff = 26% -- mixed
Bb/FF =17% -- mixed
Bb/ff = 4% -- mixed
BB/Ff = 15% --mixed
bb/Ff = 4% -- mixed
I know this only comes to a total of 97%, but I had to round some of the decimals--plus I am brain fogged! Also, do we know whether Bsm & Fok have an equal weight in predicting the GcMAF outcome?
But if this should happen to correlate with the general CFS population, it might give some ideas of at least the percentages of the best and worst responders to GcMAF--provided that VDR results really are predictive.
Hope I was able to count accurately!
Sushi
--I'll check it later--but here are the percentages that showed up for the different Genetic combos:bb/FF = 6% -- the best
BB/ff = 4% -- the worst
bb/ff = 6% -- mixed
BB/FF = 15% --mixed
Bb/Ff = 26% -- mixed
Bb/FF =17% -- mixed
Bb/ff = 4% -- mixed
BB/Ff = 15% --mixed
bb/Ff = 4% -- mixed
I know this only comes to a total of 97%, but I had to round some of the decimals--plus I am brain fogged!
Also, do we know whether Bsm & Fok have an equal weight in predicting the GcMAF outcome? But if this should happen to correlate with the general CFS population, it might give some ideas of at least the percentages of the best and worst responders to GcMAF--provided that VDR results really are predictive.
Hope I was able to count accurately!
Sushi
Sushi
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Hi Ronan,
You might ask the same question on the Dutch forum--some patients there are getting it shipped to them. (http://www.mecvs.net/Forum.html) This is a really good question!
Anyone out there know?
Sushi
RivkaRivka
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Hi,
Can you tell us what the reported side effects were/are, and what percentage of the patients on GcMAF experience them?
Thanks!
Wow Sushi! fantastic work! THANK YOU very much! Buff...Very few people are bb/FF then, provided Yasko's test is reliable and the same...The question arising, of course, is, which one of the "mixed" results work good enough...So far we only know about Bb/Ff...Time will tell!
Saluditos,
Sergio
Saluditos,
Sergio
Ronan I would think its like most injections without preservatives you keep them in the freezer, the ten minutes is to defrost, use and then back in the freezer for a multi use phial. Just e-mail the nurses if you are unsure though they are very helpful.
The main reported side effect is headache. And on and after the day of the injection: more tiredness. The side effect don't seem as bad but there are side effects.. I experience more brainfog at some times but it is still hard to tell. I will try to get some raw numbers from the nurse and will get back to you when I have the info.
guest
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Sushi, thanks for the listing. The best combination doesn't seem to be very common.
Regarding KDM I think he cannot do wonders although he somewhat claims to. Moreover he often exaggerates about the good results he gets. GcMAF probably won't work for many of us and even if it does, it will not cure XMRV. It could enable someone to live a normal life again, of course till better treatment options are available. The point however is that there is no alternative to KDM. He is up to date with diagnostics and treatment and this is where most other doctors fail.
In Germany for example 95% of doctors don't know what CFS is or see it as pure psychologic disease that needs to be treated with CBT, antidepressants and exercise. They deny all the immunological abnormalities of PWCs and don't know anything about HHV6/7 or XMRV. The remaining 5% are quacks who also don't know what HHV6/7 or XMRV are but would like to earn some money from you. They run useless tests and will treat you with vitamins/minerals/certain diets etc.. This of course won't cure the patient but as long as he gets treated and believes in it and the quack gets the money, both are happy.
We have very few normal CFS doctors in Germany. They know about XMRV and will run tests but these tests for example were used in the zero-zero-studies so there is a high chance that this is a waste of money as well. It takes time till they have better tests. Moreover even if you are XMRV+, you won't get antivirals because these doctors are to frightened to prescribe them.
Back to Brussels, KDM has the best tests, knows perfectly what CFS is and will treat you with medication that based on the scientific knowledge we have, should have a positive impact on you other than the placebo effect. Even if KDM would believe in Santa or would claim that the earth is flat, I wouldn't care and make an appointment next week because diagnostics and treatment count! PWCs won't get cured by warm words, that's for sure.
Regarding KDM I think he cannot do wonders although he somewhat claims to. Moreover he often exaggerates about the good results he gets. GcMAF probably won't work for many of us and even if it does, it will not cure XMRV. It could enable someone to live a normal life again, of course till better treatment options are available. The point however is that there is no alternative to KDM. He is up to date with diagnostics and treatment and this is where most other doctors fail.
In Germany for example 95% of doctors don't know what CFS is or see it as pure psychologic disease that needs to be treated with CBT, antidepressants and exercise. They deny all the immunological abnormalities of PWCs and don't know anything about HHV6/7 or XMRV. The remaining 5% are quacks who also don't know what HHV6/7 or XMRV are but would like to earn some money from you. They run useless tests and will treat you with vitamins/minerals/certain diets etc.. This of course won't cure the patient but as long as he gets treated and believes in it and the quack gets the money, both are happy.
We have very few normal CFS doctors in Germany. They know about XMRV and will run tests but these tests for example were used in the zero-zero-studies so there is a high chance that this is a waste of money as well. It takes time till they have better tests. Moreover even if you are XMRV+, you won't get antivirals because these doctors are to frightened to prescribe them.
Back to Brussels, KDM has the best tests, knows perfectly what CFS is and will treat you with medication that based on the scientific knowledge we have, should have a positive impact on you other than the placebo effect. Even if KDM would believe in Santa or would claim that the earth is flat, I wouldn't care and make an appointment next week because diagnostics and treatment count! PWCs won't get cured by warm words, that's for sure.
RivkaRivka
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does anyone know the email or phone number for making a first appt with KDM?
George
waitin' fer rabbits
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Dr. Deckoff-Jones is in the house folks over on the thread about her recent blog. So come on over and ask her a question before she get's wise and runs away. (big grins)
Click me to go there now!
Click me to go there now!
Hi Rivka,
In this blog a patient of him (I believe) posted his information:
http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/
I would add that if you want to fly there, there are two airports:
CRL Airport
(CRL) Charleroi Brussels South Airport, BE
1-Charleroi Brussels South Airport
Chausse de Courcelles 115
6041 Charleroi, Belgique
2- Brussels Airport (BRU)
De Kleetlaan 14, 1831 Machelen, Belgi (National Airport)
To fly to the first one is MUCH cheaper, but it is 1 hour drive from the clinic, and the taxi will be about 180 euros.
To fly to the second airport is MUCH expensive, but it is 20 mins drive from the clinic. The taxi is about 25-30 euros.
Un abrazo,
Sergio
In this blog a patient of him (I believe) posted his information:
http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/
I would add that if you want to fly there, there are two airports:
CRL Airport
(CRL) Charleroi Brussels South Airport, BE
1-Charleroi Brussels South Airport
Chausse de Courcelles 115
6041 Charleroi, Belgique
2- Brussels Airport (BRU)
De Kleetlaan 14, 1831 Machelen, Belgi (National Airport)
To fly to the first one is MUCH cheaper, but it is 1 hour drive from the clinic, and the taxi will be about 180 euros.
To fly to the second airport is MUCH expensive, but it is 20 mins drive from the clinic. The taxi is about 25-30 euros.
Un abrazo,
Sergio
Serg, sorry i forgot to reply to you. I havent seen my exact result yet, he just told me it wasnt a great match but he didnt show it to me. I sent an email yesterday asking for a copy to be sent to me so hopefully i'll get it next week sometime.
When i go to KDM i stay in the http://www.eurovolleycenter.be/ hotel which is very close to him. They do a minibus service to Brussels Airport for €15 euro and €65 to Charleoi airport. The hotel is a sports center so not a tradition hotel but the rooms are comfortable and a night is about €65. They will drive you to KDM office for €4 as well so no need to do the 15 min walk!
When i go to KDM i stay in the http://www.eurovolleycenter.be/ hotel which is very close to him. They do a minibus service to Brussels Airport for €15 euro and €65 to Charleoi airport. The hotel is a sports center so not a tradition hotel but the rooms are comfortable and a night is about €65. They will drive you to KDM office for €4 as well so no need to do the 15 min walk!
filfla4
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Thanks for this Cansado. How often do you take this? Thanks!!
I appreciate you all, the information for those of us sick is invaluable.
I posted this question on Dr. Yasko's Forum:
"I would like to know my Bsm (not given on my test).
My VDR Taq is ++; and my VDR Fok is --.
Is Bsm correlated with either of these? or would it require a separate test?"
They posted this reply:
"In answer to your BSM question, Dr. Amy used to test for VDR- TAQ and VDR-BSM and found that they usually tracked together. So she eliminated the BSM snp so she could add in another without increasing the price."
Reading Sushi's post it appears most people are moderate responders.
I understand Dr. Cheney is disseminating information to other Drs. Although, it sounds his diagnostics and treatment are not as detailed. Dr. Cheney may not be as focussed on the "gut" as Dr. Meirleir.
I posted this question on Dr. Yasko's Forum:
"I would like to know my Bsm (not given on my test).
My VDR Taq is ++; and my VDR Fok is --.
Is Bsm correlated with either of these? or would it require a separate test?"
They posted this reply:
"In answer to your BSM question, Dr. Amy used to test for VDR- TAQ and VDR-BSM and found that they usually tracked together. So she eliminated the BSM snp so she could add in another without increasing the price."
Reading Sushi's post it appears most people are moderate responders.
I understand Dr. Cheney is disseminating information to other Drs. Although, it sounds his diagnostics and treatment are not as detailed. Dr. Cheney may not be as focussed on the "gut" as Dr. Meirleir.
RivkaRivka
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hi crappy,
thanks for all yr info.
also, you wrote: "I understand Dr. Cheney is disseminating information to other Drs. Although, it sounds his diagnostics and treatment are not as detailed."
can you tell us more regarding what you mean by the fact that cheney is disseminating info to other doctors? do you mean re: GcMAF or do you mean in general about everything he is doing? if you are talking about GcMAF, can you tell us what you know? is cheney telling other doctors that they can get the GcMAF from him (cheney)? is he sharing his GcMAF protocol? any more hints you can give us are appreciated. thanks!