New Forms Of GcMAF (MAFX5, GOleic, etc.)?

[GcMAF Australia]

Thank you. I am too, to say the least. Obviously, it's still a battle. I really wanted to reiterate Why I posted this. 1.) Because doctors are using it for Lyme and on Lyme patients. (and several CF patients are undiagnosed with Lyme disease). 2.) GcMAF.eu did post that it was being used for Lyme disease. (back when I purchased it). If and Because we are extremely sensitive to it, and it advertises as "high potency than all others" and still advises the standard shot amount, double "Beware". Because what happened to me, was probably worse than any herx reaction I have ever had...even flagyl. I did have very elevated inflammatory markers though.
p.s. ironically, a lot who are on it or have been, have told me they are testing + for /lyme and co-infections.

Thanks Lerae,
I think that some US doctors are finding around 95% 0f their CFS/ME patients have Lyme infections.
The US govt has just updated their numbers to 300,000 Lyme infections but

 

[lerae]

Can I ask you if you took it? And did you have any adverse reactions?
Mr. Noakes responded with "GcMAF is made in our bodies, therefore cannot cause any reaction, but possibly fatigue". However, can't it react adversely in lieu of inflammatory markers, vit d levels, all those things? He also stated the new Lyme protocol dosage. That was not the case when I ordered it.
Basically he is claiming it cannot cause any bad or uncomfortable symptoms. Again, there were many patients I knew who had increased inflammation, and very severe. One was also a Dr. Klinghardt's patient.
I believe Sushi stated she did as well? Sushi...if I'm wrong, please correct me. I know you counceled me on taking low dosages.

 

[Sushi]

Can I ask you if you took it? And did you have any adverse reactions?
Mr. Noakes responded with "GcMAF is made in our bodies, therefore cannot cause any reaction, but possibly fatigue". However, can't it react adversely in lieu of inflammatory markers, vit d levels, all those things? He also stated the new Lyme protocol dosage. That was not the case when I ordered it.
Basically he is claiming it cannot cause any bad or uncomfortable symptoms. Again, there were many patients I knew who had increased inflammation, and very severe. One was also a Dr. Klinghardt's patient.
I believe Sushi stated she did as well? Sushi...if I'm wrong, please correct me. I know you counceled me on taking low dosages.

I'd say Mr. Noakes is ill informed as to the possible reactions to GcMAF (actually to increased macrophage activity) in Lyme and ME/CFS patients.

ME/CFS patients using GcMAF from GcMAF.eu, BGLI and those getting it from KDM or one of the doctors he supplies have all had increased inflammation if they took too high a dose, and/or had high lab markers for inflammation and some other factors.

Some have also had other difficult responses including IRIS. This is why extensive testing should be done before taking GcMAF and that testing should (in my opinion) include testing for Lyme and co-infections.

Generally patients with ME/CFS do not tolerate high doses (except for a few I know, including Cindy who posts here). Perhaps patients who tolerate higher doses have not been sick as long and haven't accumulated as many other viruses and infections?

Sushi

 

[GcMAF Australia]

Can I ask you if you took it? And did you have any adverse reactions?
Mr. Noakes responded with "GcMAF is made in our bodies, therefore cannot cause any reaction, but possibly fatigue". However, can't it react adversely in lieu of inflammatory markers, vit d levels, all those things? He also stated the new Lyme protocol dosage. That was not the case when I ordered it.
Basically he is claiming it cannot cause any bad or uncomfortable symptoms. Again, there were many patients I knew who had increased inflammation, and very severe. One was also a Dr. Klinghardt's patient.
I believe Sushi stated she did as well? Sushi...if I'm wrong, please correct me. I know you counceled me on taking low dosages.

... The Lyme Doctors are saying that the true values of Lyme infections in the US is around 3-4 million!!.

Dr Noakes is not a scientist, but the GcMAF was originally produced for cancer, in which there are probably minimal side effects. lyme people are different and can be very sensitive to it, and it looks like Lyme interferes with vitamin D metabolism.
GcMAF is also naturally produced in the body.
No I have not used it but I communicate with 3 or 4 doctors who have, i would like to do the nagalase test.
With GcMAF the motto is START LOW & START SLOW.
best regards

 

[GcMAF Australia]

 

[lerae]

Australia, so sad abt Lyme isn't it! Hopefully the ILADS conference has some more new info.

I thought I would include the emails I received when letting them know of the reactions. I guess I was banned? Which doesn't surprise me post dealing with him. Very disheartening. So sad. I don't know how someone could be so awful to such sick patients...we are just trying to keep are heads afloat.

I did write a few emails Before I received the product, because funds were sent to the wrong paypal account & my address information was wrong on their end, even though I changed it. (ugh, brain encephalitis mixed with poor information. 50% my fault. However, I was never refunded for a product purchased). After the doctor (because I was apparently banned??? which my friend was too, after her dealings & some tears shed from him) purchased the GcMAF (several months later) & I used some, I did try to sell it, as many as you know. After Huge adverse reactions and poor follow-up care. With very very small dosages... like .010 - .025 ml.
I didn't want to take a chance when someone could use it for cancer. The original purpose.

Ok, I think this is all. Basically, he believes there are no side affects. However, now has decreased the original dosage to .05 ml for Lyme for an unidentified cause. huh?

Sorry you all. Again, it obviously helps many! This was my truth. Bye and lots of hugs.



"Dear Barbara,
GcMAF rebuilds the immune system. After the first injection, inside two hours GCMAF will start to affect your immune system. A shot of 0.1ml or more may cause tiredness which usually lasts 3-4 hours. For Lyme disease we recommend to start with 0.05ml dose.
When you contacted us with endless e-mails in October 2011, we refunded you your money and banned you.
Please do not contact us again.
Beate
PA to David Noakes
CEO to Immuno Biotech Ltd
0044 7781 411 737
"We have over 5,000 participants and you are the only one to report side effects.
GcMAF has no side effects on it's own. You would not expect it to as all healthy people have GcMAF inside them."
The reaction you had was not caused by GcMAF."

 

[ukxmrv]

I've met other people who have said that David Noakes is brusque or hard to get on with. However, I have several friends on GC-MAF through him and the majority are doing very well. Others have done terribly and had awful reactions or in one case no effect at all.

Maybe David Noakes was not prepared to admit in an email to you that there were side effects or severe reactions in some patients. He may not be willing to put it into writing as he may be worried about being sued or similar.

I've had horrendous reactions to ordinary prescription drugs from my GP and can really sympathise on what it is like to have a disease and then be made worse by a drug that is supposed to treat symptoms.

 

[GcMAF Australia]

this bad reaction (Herxing) is so badly felt by Lyme patients. I would not wish it on any one. In 1 way it is telling the body that the treatment is having some effect. Dr lewis in melbourne thinks that where the reaction happens is where the infection is.
cheers

 

[Valentijn]

this bad reaction (Herxing) is so badly felt by Lyme patients. I would not wish it on any one. In 1 way it is telling the body that the treatment is having some effect.

I'd be extremely wary of attributing any adverse reaction to herxing, unless it's well-proven to happen and there is a clear way to differentiate between herxing and adverse reactions.

To put it in another context, we could assume that the bad reaction to Graded Exercise Therapy (GET) is actually just herxing, which means it's helpful and we should keep doing it. Which is obviously very bad and harmful reasoning.

 

[lerae]

And I agree, "herxing" is such an overrated term. Especially knowing how detox pathways and genetics play a role.
We could just be Plugged, not killing , hut creating toxins in our bodies unable to get out!. Adverse reactions usually mean something bad... Hence doing the gently approach. ozone, oils, herbals. some abx injections.
Again, in saying that. GcMAF needs to be monitored in people with genetic issues.

 

[GcMAF Australia]

Ceratinly this question of herxing is a vexing one,
I realise that, From what others in the Australian Lyme sites tell me it is very frequent in Lyme cases, it is taken by many, many of these people that the treatment is working.
I think that they have ways of telling if it is making one worse.
If you google Lyme Australia or look at the Australian face book sites then they have more information, These are sites of about of up to about 300-400 Lyme sufferers and they have association with some Lyme doctors.
Adverse exercise reactions is not a true herx
I hope this helps.

 

[ukxmrv]

The Herx argument came up a lot on both CFS and Lyme groups over the years. Personally I gave up using the term after adverse reactions to drug and treatments when other patients were encouraging me to keep going through the very severe reactions but I just got worse and worse.

I've not seen any evidence that in CFS patients have a true Herx (as per the original Herxheimer work). It was always just a guess and for me, it never felt like the whole story.

When I started on MAF314 and started reading about IRIS as a possible mechanism to explain the severe reactions some people were having to the MAF's it seemed to make more sense to me given that my immune system is so out of wack when tested and the symptoms I had felt like immune ones.

I've noticed that some of the Lyme groups and discussions have moved away over the years from the original info that they used to give about Herx's to more of an immune activation one as well. Personally I'd not go for information there (unless something has changed recently).

 

[GcMAF Australia]

I would not wish Lyme disease on my worst enemy
(maybe a few politicians though)

 

[ukxmrv]

I would not wish Lyme disease on my worst enemy
(maybe a few politicians though)

Absolutely agree, GcMAF Australia

People with Lyme have had an incredibly raw deal and they still face huge barriers to getting the recognition and treatment they richly deserve.

We are all trying to get back to better health. We are all learning here.

 

[lobba123]

good news it looks like stabilized vitamin d made a big hit on my hbv infection, just for comparison and for you to understand the sharp decline of the virus...a normal immune system at the stage of acute infection takes 6 to 12 months to clear hbsag, so hbsag are normally very slow even at acute infections.a very low titer is less than 1000iu/ml, at that stage the virus usually can t replicate anymore on my genotype which is D and immune system has the control

27th started stabilized vitamin d injections, started with 0.1ml and since no sides at all i ve got to full dose 0.26ml next day
the 4th of october i also took high dose vit d3 60.000iu daily to make vitd25oh from 71ng/ml to 128ng/ml but i think this is not the main reason because i often take these doses when vitd25oh goes less than 80ng/ml
stab vit d taken IM every 5 days

27 sep 2013 3822iu/ml vitd25oh 71ng/ml
07 oct 2013 1957iu/ml
09 oct 2013 vitd25oh 128ng/ml

 

[Seven7]

If anybody wants to sell some, I would love to try the Goleic or any form. I am hesitant to invest all that money without trying first. @lerae

 

[bykerchic]

Australia, so sad abt Lyme isn't it! Hopefully the ILADS conference has some more new info.

I thought I would include the emails I received when letting them know of the reactions. I guess I was banned? Which doesn't surprise me post dealing with him. Very disheartening. So sad. I don't know how someone could be so awful to such sick patients...we are just trying to keep are heads afloat.

I did write a few emails Before I received the product, because funds were sent to the wrong paypal account & my address information was wrong on their end, even though I changed it. (ugh, brain encephalitis mixed with poor information. 50% my fault. However, I was never refunded for a product purchased). After the doctor (because I was apparently banned??? which my friend was too, after her dealings & some tears shed from him) purchased the GcMAF (several months later) & I used some, I did try to sell it, as many as you know. After Huge adverse reactions and poor follow-up care. With very very small dosages... like .010 - .025 ml.
I didn't want to take a chance when someone could use it for cancer. The original purpose.

Ok, I think this is all. Basically, he believes there are no side affects. However, now has decreased the original dosage to .05 ml for Lyme for an unidentified cause. huh?

Sorry you all. Again, it obviously helps many! This was my truth. Bye and lots of hugs.



"Dear Barbara,
GcMAF rebuilds the immune system. After the first injection, inside two hours GCMAF will start to affect your immune system. A shot of 0.1ml or more may cause tiredness which usually lasts 3-4 hours. For Lyme disease we recommend to start with 0.05ml dose.
When you contacted us with endless e-mails in October 2011, we refunded you your money and banned you.
Please do not contact us again.
Beate
PA to David Noakes
CEO to Immuno Biotech Ltd
0044 7781 411 737
"We have over 5,000 participants and you are the only one to report side effects.
GcMAF has no side effects on it's own. You would not expect it to as all healthy people have GcMAF inside them."
The reaction you had was not caused by GcMAF."

 

[GcMAF Australia]

good news it looks like stabilized vitamin d made a big hit on my hbv infection, just for comparison and for you to understand the sharp decline of the virus...a normal immune system at the stage of acute infection takes 6 to 12 months to clear hbsag, so hbsag are normally very slow even at acute infections.a very low titer is less than 1000iu/ml, at that stage the virus usually can t replicate anymore on my genotype which is D and immune system has the control

27th started stabilized vitamin d injections, started with 0.1ml and since no sides at all i ve got to full dose 0.26ml next day
the 4th of october i also took high dose vit d3 60.000iu daily to make vitd25oh from 71ng/ml to 128ng/ml but i think this is not the main reason because i often take these doses when vitd25oh goes less than 80ng/ml
stab vit d taken IM every 5 days

27 sep 2013 3822iu/ml vitd25oh 71ng/ml
07 oct 2013 1957iu/ml
09 oct 2013 vitd25oh 128ng/ml

Hi andy update on this improvement

 

[JalapenoLuv]

I've been on Goelic for four months. It is powerful and definitely works. Being sublingual it has the huge advantage of not needing injections. They classify patients into responders and nonresponders. Research is ongoing and you have to promise to report progress to purchase product.

 

[Lou]

I've been on Goelic for four months. It is powerful and definitely works. Being sublingual it has the huge advantage of not needing injections. They classify patients into responders and nonresponders. Research is ongoing and you have to promise to report progress to purchase product.

That's good news. Do you have ME/cfs? If so, how long?