I was cured with GCMAF

[Jesse2233]

@Jonathan Edwards

Let's set aside the controversy, marketing tactics, and lack of RCTs for a minute.

Do you believe sequential deglycosylation of the vitamin D-binding protein could theoretically create macrophage activating factors that enhance the immune system's ability to eliminate aberrant T / B cells and chronic viruses / bacteria?

 

[Hip]

I also note that the original poster is going to be 'out of town' for a bit!

Are some people having their legs a teeny bit pulled here?

Looking at @carlystar13's post here, she seems quite motivated to help the ME/CFS community, even though now herself in remission. I don't sense any leg pulling.

 

[Jesse2233]

Looking at @carlystar13's post here, she seems quite motivated to help the ME/CFS community, even though now herself in remission. I don't sense any leg pulling.

I agree

 

[Jonathan Edwards]

Looking at @carlystar13's post here, she seems quite motivated to help the ME/CFS community, even though now herself in remission. I don't sense any leg pulling.

You may be right but the alternative seems to be motivation for writing a book about oneself, or maybe getting other people to write it, that is likely to make PWME look really dumb if it claims to involve having Lyme disease cured by a 'drug' the inventor of which has said he no longer thinks the main ingredient is necessary. I cannot see how this is going to help the ME/CFS community. This sort of thing is exactly what causes the 'stigma' or people not taking the illness seriously.

 

[CFSTheBear]

You may be right but the alternative seems to be motivation for writing a book about oneself, or maybe getting other people to write it, that is likely to make PWME look really dumb if it claims to involve having Lyme disease cured by a 'drug' the inventor of which has said he no longer thinks the main ingredient is necessary. I cannot see how this is going to help the ME/CFS community. This sort of thing is exactly what causes the 'stigma' or people not taking the illness seriously.

I feel like the community on the whole (not singling out anyone) can sometimes be guilty of not applying the same stringent criteria we use to criticise say, the PACE trial, to other therapies, simply because it appears to have worked for someone else, or because we've found a doctor who listens and suggests treatment.

 

[Hip]

cured by a 'drug' the inventor of which has said he no longer thinks the main ingredient is necessary.

From what I can make out in this article, the Goleic inventor Dr Marco Ruggiero seems to be saying that the anti-cancer effect of Goleic does not come from its GcMAF component, but from the oleic acid, which the article says is a known anti-tumor factor.

However, that's for cancer, but in conditions such as ME/CFS it may still be the GcMAF that provides the benefit.

The article incidentally also says that the idea GcMAF is inhibited by nagalase has now been debunked. So that would seem to make the blood test for high nagalase unnecessary before experimenting with GcMAF for ME/CFS.


If I remember rightly, GcMAF became a treatment fad for ME/CFS around 7 years ago, with several ME/CFS specialist doctors using it experimentally. However, judging by the small number of respondents to this forum poll on GcMAF, not that many patients on this forum actually tried it; although for those that did, the poll results look reasonable, with around one third of patients reporting feeling either "significantly better" or "incredible".

I am not sure if any ME/CFS specialists are still using GcMAF; if they are not, that would suggest that GcMAF did not live up to its promise.

I feel like the community on the whole (not singling out anyone) can sometimes be guilty of not applying the same stringent criteria we use to criticise say, the PACE trial, to other therapies, simply because it appears to have worked for someone else, or because we've found a doctor who listens and suggests treatment.

We need to make a distinction between ME/CFS patients (and their doctors) speculatively and experimentally trying out treatments, and major studies like GET and CBT which end up informing opinion and treatment protocols in health services around the world. GET and CBT should be very stringently scrutinized, simply because of their global influence on medical thinking and medical treatment (which as we know has been a very negative influence).

Whereas you don't need the same kind of scrutiny when an ME/CFS patient online says: "hey I found treatment X led to major improvements in my ME/CFS".

Although I do usually try to scrutinize any stories posted on this forum reporting major benefits from a treatment, by asking the poster lots of questions.

 

[JeanneD]

I feel like the community on the whole (not singling out anyone) can sometimes be guilty of not applying the same stringent criteria we use to criticise say, the PACE trial, to other therapies, simply because it appears to have worked for someone else, or because we've found a doctor who listens and suggests treatment.

I think you may be mistaking a willingness to consider the possible merits of a therapy with a logical physiological basis with mindless jumping on any bandwagon that comes by.

This is just discussion. There is nothing inappropriate or unscientific about listening to what people have to say, gathering information, thinking, and sharing those thoughts. Refusing to listen and think would be unscientific.

The foundational theory of PACE has no reasonable physiological basis. The research was not only flawed, but falsified. It is the research study that was very rightly strongly criticized.

Show me an incredibly poor research study showing GcMAF is highly successful, and I will happily use the same stringent criteria for criticizing that particular research study.

In the meantime, I will continue to casually discuss any number to theories and therapies, which is not at all the same thing.

 

[Sushi]

I am not sure if any ME/CFS specialists are still using GcMAF; if they are not, that would suggest that GcMAF did not live up to its promise.

The reason that not many doctors are presrcibing and patients using injected GcMAF is that one of the companies that supplied it made unsubstantiated claims for it in an irresponsible and unscientific manner and it was then banned in many countries. Many of us would continue to use injected GcMAF if we could get it. Like most protocols that ME/CFS patients try, only a certain percent respond well. I responded very well and am sorry that I can no longer use it.

 

[FinRinTin]

Well..at the beginning of my CFS journey four years ago I've tried GcMAF: a lot of hopes, a lot of money and no effect except of the not unpleasant taste of the yoghurt

 

[IThinkImTurningJapanese]

I see that one of the links goes to Saisei Mirai--I have been in contact with them in the past and was not impressed with their inability to give critical information about their products.

That may have been due to limited English ability. If you still want info from them I can call them and discuss this with them in Japanese.

They will close in two weeks for the Holidays though,

Saisei Mirai Clinics (Inui Clinic, Keihan Clinic, Kobe Clinic and R Science Clinic) will be closed from Saturday 30th December 2017 until Thursday 4th January 2018. We will reopen again in the new year on Friday 5th January 2018.
Best wishes from all of us for the Holiday Season.

 

[Sushi]

That may have been due to limited English ability. If you still want info from them I can call them and discuss this with them in Japanese.

Thanks! Here was the problem I had with their injectable GcMAF: ME/CFS patients are usually very sensitive to the dosing of GcMAF. I knew from experience that I needed pretty much exactly, a dose of 25 ng. They said that they couldn't guarantee the potency and that it could be in a range from something like (forget the exact numbers) 1000 - 2500 ng per dose. That would be dangerous for me and many others. Maybe they have found a way to control the potency now as this was a few years ago.

If you could call them I'd be very grateful!

 

[IThinkImTurningJapanese]

Here was the problem I had with their injectable GcMAF。。。。

They said that they could prepare that for you, but it would require coming to the clinic for a blood test.

Their recommendation for you was the GcMAF spray.

If you could call them I'd be very grateful!

I hope that helps.

 

[TreePerson]

You may be right but the alternative seems to be motivation for writing a book about oneself, or maybe getting other people to write it, that is likely to make PWME look really dumb if it claims to involve having Lyme disease cured by a 'drug' the inventor of which has said he no longer thinks the main ingredient is necessary. I cannot see how this is going to help the ME/CFS community. This sort of thing is exactly what causes the 'stigma' or people not taking the illness seriously.

I don’t think the stigma and the historical failure for this illness to be taken seriously is in anyway the fault of patients. All patient groups whether they have MS or breast cancer or eczema will on occasion resort to untested, outlandish and possibly unwise alternative treatments.
I think pwme are entitled to the same respect as every other ill person. They should not have to tiptoe around in fear that their every action will be scrutinised for signs that they are unhinged. This attitude is to do with deep-seated arrogance prejudice and possible misogyny and is not remotely the fault of pwme.

 

[Mary]

You may be right but the alternative seems to be motivation for writing a book about oneself, or maybe getting other people to write it, that is likely to make PWME look really dumb if it claims to involve having Lyme disease cured by a 'drug' the inventor of which has said he no longer thinks the main ingredient is necessary. I cannot see how this is going to help the ME/CFS community. This sort of thing is exactly what causes the 'stigma' or people not taking the illness seriously.

PWME have not been taken seriously from the get go. When the CDC went to Incline Village in the early 1980's, they didn't even examine any patients. Dr. Reeves declared ME/CFS to be a disease of depressed menopausal women. We've been ridiculed and insulted from the very beginning and still are in very many quarters. (I know Incline Village was not the "beginning" of ME/CFS but I think it's when it first burst into public awareness in the U.S. at least)

As @TreePerson said, others with severe illnesses try all sorts of untested treatments, most notably cancer. But that doesn't cause anyone to doubt the reality of cancer or to treat cancer patients in general with contempt.

And actually their very willingness to try untested treatments is considered evidence of how serious their illness is and how badly they want to recover.

 

[TreePerson]

Precisely. There is a wilful ignorance in some parts of the medical profession. You see the same thing in politics. There is no homelessness there is no poverty, the disabled aren’t being hounded to the deaths by government departments. Dreadful people who just believe what they choose regardless.
I don’t think any of us should be intimidated.

 

[Sushi]

Their recommendation for you was the GcMAF spray.

Thanks, looks like I'll have to register with the website to be able to click on "Description" which hopefully has dosing information, though I'm not convinced that transdermal would work in the same way as an injection. Anyway, something to investigate!

 

[carlystar13]

did you test your nagalase levels prior to or during/after treatment?

No I hadn't unfortunately.

 

[carlystar13]

That really is quite some story!

I had not heard of Goleic GcMAF before. Is Immune Biotech where you bought your Goleic? Looks like the cost is $225 per month if you take one dose of Goleic per week. Goleic also seems to be available at GcMAF Asia.

Are you fully cured in the sense that you no longer need to take Goleic, or are you still taking this supplement in order to keep the ME/CFS symptoms at bay?



It looks like Goleic (which is also called OA-GcMAF) is a molecular complex of GcMAF with oleic acid (from olive oil). There is a paper here on an apparent anti-cancer effect of Goleic.

I got the Goleic from the first link you supplied. I don't know if its true but they said that the product isn't as good from Asia. I am fully cured and no longer need to be on Goleic. I was on it for just over a years. No symptoms have come back.

 

[carlystar13]

@carlystar13

It would be great if you could list all the symptoms you used to have and that you are now cured of. Since there are a number of different symptom patterns, it will help the rest of us figure out if this treatment might work well with our particular symptom set.

Thanks for anything you can tell us.

My Lengthy Symptom List:

(In order of most to least distressing)

· General malaise – A constant feeling of not being well or ‘viral malaise’ (how a person feels when they come down with the flu).

· Post-exertional malaise – Extreme energy loss and heightening of symptoms upon light exertion. Exertion can be physical or mental. Loss of stamina. Constant need to recharge flat battery. Can take hours, days, weeks, months, or even years depending on the level of exertion. Pushing past symptom warnings causes lengthening of time that it takes to recover.

· Fatigue – Constant feelings of extreme exhaustion. Effects energy and strength. Wheelchair bound. Confined to the house.

· Muscle fatigue – Weakness. Effects every muscle including eye muscles.

· Cognitive disturbances –Concentration, focus, word recall, problem solving, and storing and processing and recalling new information are all affected.

· Brain fatigue – Made worse by physical or mental exertion. Can’t do anything requiring a continued period of concentration or physical activity. Includes reading, TV, talking, and other light activities. Results in brain fog (head is unclear, thick, heavy).

· Headaches – Vice like, pressure, full, heavy, tight, swollen feeling. Feels as though head will explode from overstimulation.

· Breathing issues – Breathlessness. Air hunger. Worsens with physical and mental activity.

· Sensitivity to noise, light and movement, touch, and other senses – Exhausts me.

· Racing thoughts

· Stomach problems – Food sensitivities. Stomach aches. Frequent diarrhoea. Constipation. Leaky gut syndrome. Low stomach acid.

· Postural hypotension (POTS) – Lightheaded, woozy, unavoidable need to lie down.

· Sleep – Unable to fall asleep for hours due to racing thoughts. Never feel sleepy at night. Wake constantly. Very light and unrefreshing sleep. Night sweats. Wake in night with severe nausea. Groggy upon waking, can last all day. Hypersomnia (difficult to wake in morning).

· Extreme thirst – Especially when overexerted.

· Hypoglycaemia – Need to eat foods high in protein and fat. Even following this diet feel weak and light headed between meals.

· Joint pain – In elbows and hips. Came on after many years.

· Erythromelalgia – Upon a change in temperature feet heat up, swell, turn red, burn, have sharp tingles. Freezing during the rest of the day.

· Heart palpitations.

· Low blood pressure.

· Mood changes – Annoyed and irritated when symptoms become severe.

· Sensitivity to chemicals.

· Body temperature imbalances – When cold cant warm up. When overexerted mentally or physically get overheated. Cold hands and feet.

· Ear popping when fatigued or too much noise.

· Swollen glands in neck.
I'd be very interested in how GcMAF (actually Goleic) affected your PEM. What was your PEM like, how did the improvements progress? Was is rapid or slow? Did your PEM threshold gradually increase or did you find you just went longer and longer without PEM. What was your PEM like -- how long to onset and recovery, what were the symptoms?
my PEM was always extreme but so extreme by the last 3 years that I was bedbound, had to lay completely still at all times, with absolutely no touch, or sound and very little sight. I wore ear protectors and earplugs and an eye mask and stayed in one room with no light. I couldnt speak except for about 5 words a day and couldnt be spoken to. My story is a bit confusing but basically the supplement took away all of my symptoms extremely quickly, some very severe ones like breathlessness, but it didnt take away the PEM until I started to ignore it and do things again. A doctor said my body had become so used to being ill that it hadnt recognised when it was able to function normally again. I had to wake it up. it took me about 6 months of doing this before I was fully well. It was obvious that the drugs had worked because I had tried soooooo many different treatments during the 8 years I had been ill up until that point and none of them had helped at all. this one within a week i was seeing huge changes. things were just disappearing like joint pain, the breathlessness that was so severe by that point that i could no longer manage to speak, my stomach issues that were so severe that I had just been in hospital and almost died from lack of nutrition, the list could go on and on. The improvement in these areas was rapid. Throughout my entire illness I had the highest levels of EBV test results that many doctors had ever seen. I was tested again after about 6 months on Goleic and the results were negative! I suppose my threshold gradually increased and i also went longer and longer without it. each month I could look back and think, 'I wouldnt have been able to do this last month'. My symptoms when I had it were mainly head, cognition related and energy related. I would have to lay down in a quiet room until they passed. I couldnt focus or concentrate on anything and my head would feel thick, swollen, heavy, pressure filled. my energy would go so flat. I couldnt take much interaction with others. My onset was sudden with what I thought was the flu. I was ill for 9 years and only got worse each year. I would relapse often.

 

[carlystar13]

I tried the bravo yogurt (same reaction) a lot of inflammation. I wants to try the real thing but the factory closed. I shied away from anything MAF due to my particular situation, but again I wanted to try Because it worked so well for Marco. If I were to try again, I would do the shots. Note: I am very over reactive to things, why they have me on immune modulators, so don't use me as a sample.

I super duper over reacted to everything, highly sensitive. But they gave me a program in which i built up my dose extremely slowly. it took about 6 months to get on the full dose. and i never had any reactions. and the improvements still began after only 4 doses at a very low amount!