Recurrence Rollercoaster – #3 The GcMAF route – the Good and the Bad

I’ve had mixed response to my previous post Recurrence Rollercoaster – #2 The GcMAF route with readers posting comments about their experiences with GcMAF, and their opinions on Goleic, Ruggiero and Noakes.

I’m going to keep this as succinct as possible so I can get on with the rest of my saga, so that you can make your own mind up.

The Good

  • We got the (theoretical) full doses of Goleic every day – that was one vial per day.  RRP was £400 per vial
  • Some people received an additional delivery method of suppositories
  • The Goleic injection was administered into the veins feeding the tumours, by guided-ultrasound by a very good radiologist and the creator of Goleic (Prof Ruggiero)
  • We were shown on ultrasound, the instantaneous effect an injection of Goleic had on the creation of nitric oxide by the body.   They scanned the spleen to see monitor the activity and increase in blood supply which was caused by the creation of nitric oxide by the Goleic.  An increase in blood supply was a good response for the macrophages.
  • We were shown another way of administering Goleic, via a nebulizer.
  • As there was no response after my first week, I stayed another week, and managed to negotiate this second week free.
  • We all went back with a goody bag of some Goleic
  • It was a chance to meet other people who were using GcMAF.  There were some very tragic stories of Stage 4 cancer.
  • Prof Ruggiero was charming and professional.  He was a master of the ultrasound.
  • Everyone got scans of their bodies via ultrasound.
  • Switzerland is very beautiful

The Bad

  •  All patients were made to sign a non-disclosure agreement, forbidding us from discussing GcMAF, the clinic etc. including social media and e-mails.  We were told not to discuss our treatments with each other.  All of us found it over-the-top but we signed because we were too afraid not to, afraid that this amazing breakthrough treatment would be withheld from us.  Not even Hallwang Clinic or any other cancer clinic placed such an onerous condition on us.
  • What was more ridiculous is that we were not allowed to keep a copy of the NDA – what were they trying to hide?  Yes, I should have insisted, but I felt very much at the mercy of the clinic.
  • The same research findings were trotted out over and over again during the lectures given to the patients.  It was a very small sample of patients, understandably so, as it was such a new product.  I began to get the impression that we were there, not to be cured, but as guinea pigs, part of a trial, so that they could increase their sample size and get more proof of whether it worked
  • The clinic weren’t interested in the supplements that we were taking.  They had a set list of supplements (Vitamin D, BCAA, MAP, GcMAF yoghurt, and a few others) that they used, and anything else didn’t matter.  This allowed them a get-out clause in the event the Goleic didn’t work: they would claim that our supplements stopped the Goleic from working.
  • There were 3 people who were ex-cancer patients who had been cured using GcMAF.  And that was the crux of the issue:  they were using the old form GcMAF, and not Goleic.
  • There were a few lectures on how Goleic worked, and a lecture on nutrition. That was the extent of the education.
  • The Paleo diet was prescribed.  To give the staff credit, one of the meals was prepared Paleo style and it was very tasty.  There was no interest from the staff in other diets, e.g. the ketogenic diet.  Any attempt to introduce other topics was met with a frosty reception by the staff.
  • I may or may not have got shrinkage.  Prof Ruggerio maintains I did, but my own radiologist and surgeon could find no difference.
  • It wasn’t a proper cancer clinic.  If you had a medical emergency, you would have to go to the nearest Swiss hospital.  It wasn’t a residential clinic either, so we were responsible for finding our own accommodation, and getting to the clinic.
  • At the end of 5 days, I asked for ultrasound measurement and was told I had to wait a full 7 days (i.e. the following Monday) before having another ultrasound.  I was taken aback – it felt like they weren’t interested in my results, and wanted me out just in case it hadn’t worked.  As I’d booked to leave at the weekend, I decided to stay another week just to give Goleic the best chance to work.  This meant cancelling my non-refundable flight.  I was also annoyed because this had not been stated in the website which just said that it was a minimum of one weeks’ treatment, but three weeks was best.  Nowhere did they state that we would only be measured the following week.  Another friend of mine, Claire Grant, got caught out by this, and decided not to stay a second week.
  • They weren’t interested in nagalase test results
  • They weren’t interested in the VDR test for response to GcMAF
  • There were no treatments at the weekend, apart from the yoghurt (or suppositories)

Bear in mind there are many different versions of GcMAF.  Goleic is just one variant.  There are many different manufacturers of GcMAF.

And that there are cancer clinics or integrative doctors who do use GcMAF, but always in conjunction with other treatments (for example the Paracelsus in Switzerland).  My friend, Donna Lockyear, used Goleic, then GcMAF as a monotherapy based on the recommendations of ImmuneBiotech.  She suffered a recurrence.

Finally, I’ll leave you with a review of the clinic and Goleic by Claire Grant, in her outstanding blog:  triplenegative.co.uk:

https://www.triplenegative.co.uk/gcmaf-unfairly-interviewed-or-a-fair-synopsis/

 

 

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Recurrence Rollercoaster – #2 The GcMAF route (and why you should always kick the tyres of any cure)

A quick re-cap for newcomers to this blog:  I was diagnosed with breast cancer (Stage 1) and spent approximately 1.5 years doing alternative treatments, but the tumour kept growing so I had a mastectomy.  I woke up from the mastectomy to find my left arm paralysed and numb due to  nerve damage (to the brachial plexus) caused by tractioning of the arm during the mastectomy.  I had to have further surgery to release the nerve and because of that, I had no conventional adjuvant treatment.  Nine months after the mastectomy, I finally regained use of my arm.  Nine months after the mastectomy, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

I’m going to try to update my blog more often.  I regularly check the other cancer blogs I follow and start getting antsy when I don’t see any recent updates.  I’ve also had readers e-mail me with a polite: “How are you?” which reading between the lines, seem to me to also be asking: “are you still alive?”

It must feel as if I am dragging out the whole recurrence and cancer journey story.  But I find it painful sometimes, relieving what happened and the humps and bumps along the way that have derailed me.  Early on I made a choice to write in retrospect so that I would have the wisdom and perspective of distance to give me objectivity.  But doing so has meant that I’ve lost a lot of the immediacy of the moment and have to rely on medical reports on e-mails.  Fortunately I kept very detailed e-mails.

This post is about my visit to a clinic which used a form of GcMAF called Goleic.  The clinic has since been shut down and I do not think that the company who was running the clinic, ImmuneBiotech, is running any more clinics (thank god).  It’s also a post about smoke-and-mirrors, and needing to kick the tyres of any cancer treatment that purports to be a cure.

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Fulda conference #9: Amygdalin (Vitamin B17/Laetrile) – advantages and risks (Dr Martin Stoppler)

FuldaMarket1

The Christmas market at Fulda. image credit: http://www.germany.travel/

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Dr Martin Stoppler studied medicine from 1980-86, and specialised in general medicine in 1992 and naturopathic treatments in 1996.  He has been practising in his own complementary therapy clinic since 1992.  He is a founding member of the registered society Forum of Orthomolecular Medicine.

He talks about his experience with amygdalin together with other therapies, for example, GcMAF for 2 years in combination:  “From my experience GcMAF also has an excellent effect in depressed patients. However, since the possibly existing interference must be suppressed before. I use GcMAF in acute and chronic inflammation, such as rheumatoid arthritis successfully. In addition, I inject directly into GcMAF malignant tumors and involved lymph nodes.”

Also of interest is how he has used B17 in the face of opposition from the German authorities as B17 is on the list of dangerous substances in Germany.  His house has been broken into several times by the police, he has been threatened, and his dog almost killed.  He has persisted because he has seen B17 work for his patients.

He came across as very passionate and caring for his patients, and willing to go the extra mile for his patients.

Dr med. Martin Stoppler

http://www.aprikosenkerne-gegen-krebs.de/

practice- your-doctor-in-internet.de, praxisihr-arzt-im-internet.de

********

Brief background

Dr Stoppler was inspired by a book by Phillip Day “Cancer”.

Dr Hans Nieper was the pioneer of B17 use in Germany (1928-98)

Dr Kanematsu Sugiura

In Germany, B17 is on the list of dangerous substances.

In 2006, 2009 and 5 weeks’ pre-conference, the police visited Dr Stoppler.  Went to his practice and his home and threatened to kill his dog.

He went through 1.5 years of court proceedings, Euro8,000 fine.  He gets around it by ordering the drugs on behalf of the patient.

What is B17?

B17 is not really a vitamin.  It is a substance found in 1,200 plants.

LD50 Mouse 443mg/kg – lethal dose

LD50 Rat = 405mg/kg – lethal dose

Recommended 9g to 12-15g/kg – human dose

Side-effects of B17:

Results in high concentration of beta-glucosidase.

Oral version – diarrhoea, GI symptoms, constipation.

Herxeimher’s reaction – toxins or tumour cells degrading.  Chills, shaking and fever.  Ozone first – non-activated MMS – liver detox and support.  Bicarbonate – IV C 20-42g

Why has a patient become ill?

– Activation or excess of free radicals.  Toxins e.g. aluminium and lead, UV.

Main factors

Stress, that the patient sees as negative.  Psycho-oncology

Also – teeth – deficits in micro-nutrient field.

Digestive system.

Other treatments

102mg sodium selnite

Germanium sesquioxide – works through oxygen pathway

DCA – bodyweight dependent – IV 15mg/kg of bodyweight

DMSO – IV – saline – transports B17.  Not in a glucose solution.  5ml didn’t work – nausea and vomiting.  05-1ml/250ml.

Dr Pachmann’s lab in Bayreuth – Maintrac

Use of magnetic mats and cortisol for allergies

GcMAF protocol

GcMAF – injects into tumour and ascites.

uPAR – Urokinase-type plasminogen activator receptor – 400ng

Vitamin D level – 200-300 or 400-500 if using GcMAF.

3,000 IU orally

Decristol – 10 capsules 200,000/day [this is Vitamin D in Germany]

Doesn’t use nagalase test because of fluctuations during the day

GcMAF – IV twice weekly – 400ng

B17 protocol

B17 – phasing in 3g-6-9g.  1st week Monday, Wed, Fri.  2nd week, twice weekly.  6th week – oral administration

Dr Stoppler starts with 9g.  Causes Herxheimer’s depending on patient.

Kinofsky index of 60-70 drink a lot.

4 hours of treatment – exhausting for patient.

B17 supplier in Hamburg – 3g/5ml solution

Would like more research – is there an upper limit?

400ml/kg (bei 70kg = 31.5g)

B17 is not a monotherapy

uses DMSO as a transport molecule = 0.5ml

Brachial plexus injury #11 – treatments and supplements for nerve injury

After my left arm was paralysed from nerve damage caused by the mastectomy, I went into over-drive on the research front on treatments and supplements that could help.  Here are some I tried.

My nerve surgeon didn’t quite sneer, but he raised eloquent eyebrows and told me in his beautiful Italian accent that in his experience, the only thing that would restore nerve function in my case was surgery.  I thought it was a pity that he wasn’t more open to supplements that could improve the rate of healing in his patients, but there you go.

SUPPLEMENTS

LionsMane

Lion’s Mane Mushroom. Image credit: “Igelstachelbart Nov 06” by Lebrac – eigene arbeit von Lebrac. Licensed under CC BY-SA 3.0 via Commons – from Wikipaedia

1.  Hericium Erinaceus or Lion’s Mane Mushroom

I’ve already covered this in my post MEDICINAL MUSHROOMS #3 – LION’S MANE (HERICIUM ERINACEUS) FOR NERVE REPAIR but I thought I’d briefly mention this again.  This mushroom has been scientifically-tested and in laboratory tests, shown to help stimulate nerve regeneration, including nerves in brains.

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Where to get your supplements

Updated 13 June 2016

Update March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

See also update on Probiotics for Bio-Live Fermented Probiotic Liquid

Here’s a list of where to get supplements from if you live in the UK.  It is a work-in-progress, so if the supplement you’re looking for isn’t on this list, keep checking back.

vitamins-supplements

image credit: Optimumh.co.uk

The suppliers I have selected are the distillation of my personal research. They are the best value source of specific brands of supplements to date, but this is just my personal opinion.

Please do not take this list as set-in-stone, or the best of breed.   New studies and new supplements and suppliers are always emerging, so please do your own research and shop around.  If you would like to share your findings, please leave a comment below.  You will be helping many cancer patients who are trying to make their money go further!

Most of my sources are UK- or EU-based.  That’s because shipping is usually faster, and you will not incur customs or VAT for EU shipping.

If you live in the US, then lucky you – you’ve got iHerb and e-Vitamins who sell discounted supplements.  The problem with supplements in the UK is that most of them have to be imported, and so prices are higher.  If you have friends visiting from the US, order your supplements from iHerb and e-Vitamins, have them shipped to your friends and get them to bring them over.

Ordering from the US and shipping to the UK:  If you do order from the US, please be aware that shipping sometimes takes weeks, and anything over £17 (I think) will incur customs duty and VAT – I’ve been stung by this before.  This usually takes the cost of the supplement well over what you would pay from a UK company.  Also, please be aware that a number of retailers on Amazon.co.uk are based in the US and you will be hit by the same customs duty and VAT charges (on top of shipping!).

If you want your supplements delivered quickly, order from a UK retailer.

Discounts for bulk orders:  If you are ordering in bulk, it is worth asking for a discount.  Play the cancer card if necessary – supplements are expensive!  Send the retailers a nice e-mail setting out your health issue and ask for a discount. Most will give you a discount.  I have only been refused by a few who claim that they already offer discounts on their products (Healthmonthly.co.uk is one of them).  Detoxpeople.eu have loyalty schemes and discounts – I have found dealing with them a pleasure.  They are professional and knowledgeable, even if their prices aren’t always the lowest (!).  BTW, Detoxpeople.eu is the same company as Yourhealthbasket.co.uk.

Another company I have found who exceed expectations is Oriveda.nl – they are one of the best for mushroom extracts.  Their response time to e-mails is fantastic and they are experts in mushroom extracts.

Please do not feel you have to take every supplement on this list.  If you did, you would be jiggling around like a piggy-bank.  It is just not healthy to overload your liver with too many supplements.

You will also want to vary your supplements on a regular basis (e.g. on a 3-week to 6-week cycle).  Use your tumour markers as a guide to whether the supplements are working.  You may also want to increase the dosage week by week, and then switch to another supplement.  This way the cancer cells don’t get a chance to build up resistance to the supplement.

1.  AHCC (Active Hexose Correlated Compound) – Shiitake mushroom extract:  Healthmonthly.co.uk – Quality of Life Labs AHCC Rx (500mg).  This is a very expensive extract, so shop around.  Another Shiitake variant is Lentinex which is a liquid extract.  Currently under trial and not available commercially.  Lentinex is manufactured by Glyconova.  Contact:  info@glycanova.com

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GcMAF/Goleic/Bravo Probiotic – a few tips

Yogurt

For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

GcMAF:
GcMAF Cancer:

1.  Method of administration

What’s in this post can be found on the gcmaf.eu website, but I wanted to share a few tips on how to use GcMAF/Goleic:

1.  Goleic can be administered the following ways:

– by injection, intramuscularly into the underarm (see gcmaf.eu website for method).  Another site to consider is near the spleen – check with gcmaf.eu.

– intravenously – you will need to find a sympathetic integrative practitioner who’s willing to do this for you

– by nebuliser.  This is a gizmo that’s used to vaporise medication and is usually used by asthmatics.  Yes, there are macrophages in the alveoli of the lungs, and goleic has the right molecular size to be used in a nebuliser.  The dose is 0.5ml of goleic in 5ml of sterile saline.  You cannot administer GcMAF (the old style) via nebuliser.  You can only do it with goleic.

– by suppository.  This is especially good for people with liver or pelvic mets.  I don’t know how you can get GcMAF/goleic suppositories though – contact gcmaf.eu

2.  Do NOT:

– inject goleic/GcMAF into tumours – you can seed the tumour.

3.  How much?

– GcMAF/goleic may be dose-dependent.  The minimum dose is 0.25ml.  The maximum daily dose is 2.2ml (the whole vial).

4. How often?

– the ideal is daily but not everyone can afford the expense.  Once every 3 to 4 days is acceptable.

2.  GcMAF may not work

I met two people at the Immune Biotech clinic in Lausanne, Switzerland, for whom GcMAF worked.  One had stage 4 ovarian cancer, and the other stage 4 prostate cancer.

These are the only two people whom I know of that it’s worked.  I know that Immune Biotech has published a study on the efficacy of GcMAF, but I’ve heard rumours that these people may have come to the clinic from German cancer clinics, so that it was the German cancer clinic treatments that were working.

I know of more people for whom GcMAF did not work, even though they were injecting 0.5ml every 3 days.

There are a number of reasons why GcMAF may not work:

– Vitamin D Receptor not compatible with GcMAF

– immune system status not able to support optimal macrophage activity, and inhibiting any GcMAF activity.  The only way you can find out your immune status is to get blood tests for it.  And then you have to correct the immune-system imbalance in order to get your macrophages up-and-running.  These tests are not done at the GcMAF clinic.  By immune system tests, I refer to the interleukins, the NK cells, the histamine level, the nitrosamine level.

– GcMAF used as a monotherapy.  Despite what the website states, I do not personally believe that GcMAF can be used on its own as a single therapy.

So if you’re thinking of going to the GcMAF clinic, I suggest you get some references, and speak to these references personally.

Please also check out the Facebook site:  https://www.facebook.com/groups/439553602725764/?fref=ts

3.  Other types of GcMAF

There’s the European version of GcMAF sold by ImmuneBiotech, and the version by Sansei-Mirei in Japan.  A number of people have told me that they use the Japanese version because they believe it’s more stable and more powerful.

4.  Bravo Probiotic

Bravo Probiotic now comes in an Easykit.  It is definitely easier to culture than the old form.

However, there are some disadvantages to this EasyKit:

(i) with the old kit, you could re-culture both compounds and stretch the cultures for longer.  This was not recommended by Bravo Probiotic, but I know people who did this, especially for those who got the old Maf314 cultures.  With the new kit, you cannot re-culture from an existing culture.  This pretty much ties you into buying replacements, whereas with the old kit, you could stretch out the cultures.  So in one fell swoop, Bravo Probiotic have managed to stop people from re-culturing (and sharing cultures) as well as tying you into their programme.

(ii) we don’t know how much colostrum is in the EasyKit.  With the old kit, colostrum had to be added in separately so we knew the exact amount in it.

(iii) the old kit had a third compound of probiotic powder that had to be sprinkled on the final mix.  The EasyKit does not have this third compound – does that mean it’s not as effective?

The cost of Bravo Probiotic — GcMAF Yoghurt — Maf314 — someone find me a camel!

For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 21 June 2014 – there is a new version of Bravo Probiotic called EasyKit – like it says on the can it is easier to prepare and is also slightly-cheaper because it comes with colostrum already included.

Updated 21 March re. daily cost of Bravo Probiotic, with adjustments for interest rates and also addition of US$ cost.

I’ve previously posted about Maf314 (which is the original version of Bravo Probiotic).

Now thanks to the generosity of friends and family who donated to my cancer-fighting fund, I’ve been able to afford a new set of Bravo Probiotic cultures.

GcMAF Success

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GcMAF at work — Bravo Probiotic — myths of the dangers of dairy products for cancer patients (a talk by Prof. Marco Ruggiero)

For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Please note:  The opinions expressed in this talk are academic considerations only and they are not intended to represent medical advice to anyone. If you need medical advice, please refer to your healthcare professional.

To listen to the talk:  https://soundcloud.com/bisforbananascisforcancer/02-12-ruggiero-gcmaf-in-action

PaperCamera2014-02-13-11-21-04

The GcMAF clinic in Switzeland

What is GcMAF and what is its role in cancer?

GcMAF is like a hormone, a neurotransmitter, a messenger that our body uses to promote wound repair, immunity and improve immune surveillance.

The concept of being cancer-free does not exist.  We always have cancer cells in our body, even from the moment we are born.  This is different from having a cancer that has a mass and infiltrates in our body.  The reason we do not have cancer of this sort is due to a mechanism called immuno-surveillance – the immune system is able to recognise cancer cells and destroy them.  This is called the induction of apoptosis provoked by the immune system.  But sometimes the immune system is no longer able to recognise and destroy the cancer cells and the cancer cells form a mass that we define as a tumour.

GcMAF was discovered by Prof Yamamoto in 1994.  Professor Ruggiero collaborated with him in 2010.

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Fulda 2013 conference #6: Leaky-Gut: Dietary regimen with MAP and GcMAF (Dr Florian Schilling) – also warning re. glutathione and cancer cells

ChristmasMarket6

The Christmas market at Fulda

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 21 September 2014 – a reader, Yulia Dolgopolova ND Sc.D, left a comment:  apparently Vitamin D dosage depends on metabolic type.  The Sun is the best source, but it is safe to take 2000-6000 UI daily for the special health conditions (D3 solution must be organic virgin olive oil or high quality cod liver oil with low vitamin A); days ON & days OFF are essential to maintain the balance (for example, D3 for 20-25 days, then rest for 5-7 days).  An interesting book to read: Vitamin D by David Feldman et. al., 3rd edition (Amazon.com)

Florian Schilling studied pre-clinical medicine at the Ludwig-Maximillian-Universitat Munchen (LMU), and then trained as an alternative practitioner, with his own clinic since 2006, specialising in integrated and complementary tumour therapy, CFS/ME, general regulatory medicine and detoxification.  He has been a lecturer at the Paracelsus College in Munich since 2007, and lectures both in Germany and internationally.

http://www.nhz-buchloe.de/

GcMAF can be obtained from Sansei-Mirai or ImmuneBiotech.

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Leaky gut is not something I’ve considered part of my anti-cancer protocol. I’m not sure why – perhaps it’s because I’ve always had a cast iron stomach, able to eat most foods, and enjoy good digestion.  But after Florian Schilling’s talk (and a later presentation by Dr ) I’ve come to realise that just because I can digest food doesn’t mean I have a good gut – there are things happening at a molecular level that I may not be aware of, that is contributing to the environment that helped nurture the cancer.

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GcMAF (Maf314, Bravo Probiotic) ice-cream

Updated March 2016 – For more information on GcMAF, please join the GcMAF and GcMAF Cancer forums on Facebook – they are closed groups, so you have to wait for your membership to be confirmed.  They contain up-to-date information on sources of GcMAF, and also feedback and contributions  by people who are using GcMAF.

Updated 20 Feb 2014 – please note, freezing Maf314/Bravo Probiotic kills the GcMAF so this is more of a dessert, then a live culture.

For more information on GcMAF and the GcMAF clinic in Switzerland:  http://www.gcmaf.eu/

As mentioned in my last post on GcMAF, I had a glut of Maf314 over the festive season (because each batch makes enough for two people for a week).

Rather than pour it down the drain, I turned some of it into a soft strained yoghurt/cheese which I mixed with chopped chives and garlic.

It was so good that someone in the household finished the whole bowl in one sitting (and then proceeded to get the squits – that’s how potent it is).

This week I cover how to make Maf314 ice-cream.  When I say ice-cream, it’s not exactly ice-cream.  Real ice-cream is made from a custard that’s made with egg yolks and cream.

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