Thursday, 26 May 2016

Sunbathing- Heliotherapy and grounding

To the people laughing at me sunbathing practically naked in the park- my health is worth more than your opinions. 

Vitamin D and light is king, don't waste this precious sunlight. Supplemental vitamin D does not compare, it is not a vitamin, it's a hormone that is synthesised from UV light onto the skin and we need the full spectrum. 

In the UK we don't get much sun so you have to take every opportunity to get it while you can. I occasionally use special sunbeds (during a week of bad weather) that have the right ratio of UVA and UVB for my skin- it's personalised and actually protects against many cancers, contrary to popular belief. If you use a standard sunbed this is not the same and can be very harmful, especially if used frequently. I only go once a week and only when the weather is terrible. 

I also now never wear sunglasses as I understand UV light going into the retina is very important for not just eye health but overall health. I won't look directly at the sun, but make efforts to look in the direction of it. You can actually become more photosensitive if you wear sunglasses and may end up like Bono. This is why I will never wear sunglasses, and only blue blockers in artificial light at appropriate times. 

My first choice will always be to lie in the sun, on the ground and with my skin in contact with the ground. In future I'm looking to move to somewhere with more sun, less population, and less nnEMF, preferably none or next to nothing! Studies on constantly being exposed to EMF are inconclusive but it's something that is very difficult to prove either way. It makes sense to me to have breaks from it though because it clearly has some effect on the brain and epilepsy. It also made me think of this glioblastoma study using electromagnetic radiation, slowing down cell division of tumour cells but what is it doing to the healthy cells? It really makes you think, or at least it makes me think!! I'll stick with the good old sunshine thanks. 

I'm pretty sure humans are the only mammals that create our own artificial environments. Get out in nature as much as you can and expose as much of yourself to UV light as possible. Heliotherapy is huge, it's healing by light and it's nothing new. Artificial light damages health and messes up our natural circadian rhythms. If you think healing is all about food you are fooling yourself. Chronobiology, optogenetics, and heliotherapy is how we heal. Food is just one part of this, and is dictated by Chronotherapy. 

This is a pretty nice resource I like to use for information about chronobiology:

'Grounding' or 'earthing' and the science behind it...

'Mounting evidence suggests that the Earth’s negative potential can create a stable internal bioelectrical environment for the normal functioning of all body systems. Moreover, oscillations of the intensity of the Earth’s potential may be important for setting the biological clocks regulating diurnal body rhythms, such as cortisol secretion.'

I would say eat plenty of oily fish and get sun, fish oil supplements are probably oxidised anyway due to the process it takes to make them so best to eat the fish themselves. Generally the quality fish oils can't hurt (could be wrong), but if they smell fishy or are stored incorrectly they probably can. This is often why the companies that produce them add flavourings to disguise the rancid, fishy taste, especially with the cheaper brands. 

Wednesday, 18 May 2016

Visit to the holistic dentist- its been a long time coming...

I just had an interesting meeting at the dentist, The news I received wasn’t surprising considering I had been meaning to remove two fillings in my mouth for a while. The whole situation left me quite upset, knowing that this situation is not unusual. I have 2 amalgam fillings that I have had for years and I know that mercury toxicity can be a causative factor for ‘brain fog’ and a contributory factor for several neurological conditions and diseases. 

Some background research showing why this visit is so important for my long term health:

'Unpolymerized resin (co)monomers or mercury (Hg) can be released from restorative dental materials (e.g. composites and amalgam). They can diffuse into the tooth pulp or the gingiva. They can also reach the gingiva and organs by the circulating blood after the uptake from swallowed saliva.'

'Mercury exerts a variety of toxic effects on both neurons and glia and also may play a role in patho- physiological mechanisms of Alzheimer’ s disease in neuroblastoma cells.

Studies in vivo and in vitro have shown that mer- cury generates reactive oxygen species (ROS) and lipid peroxidation in brain tissues, suggesting that the cell injury induced by ROS, including super- oxide anion, hydrogen peroxide, hydroxyl radical, and peroxynitrite, may contribute to the development of neurodegenerative disorders caused by mercury intox- ication.

I was deeply concerned with how I wasn’t able to have this removal much earlier after my cancer diagnosis. I had experienced significant apprehension over a period of time about the thought of seeing a ’normal’ dentist. I had actually given in and saw one eventually, but they were adamant that it would be best to leave the fillings, informing me that it would actually be more of a risk to remove them, exposing myself to more of the mercury. I knew then that in time I would have to save up and get a second opinion from someone who was less stubborn and better qualified to offer me careful, safe removal of the fillings.

It is remarkable to me looking back that I have had the positive response of complete remission of my cancer considering what I was about to hear. Normally throughout the day I feel incredibly alert and well, however my suspicions to what might be the cause of my residual, transient spells of brain fog and spontaneous fatigue appeared to be confirmed.

More about the meeting:

Oral health is essential for overall health, especially the gut and brain. My meeting today was with a fantastic holistic dentist in London, David Cook.

It is always a relief to find any kind of medical professional who understands my condition and metabolic approach to it. I also continually find this quite impressive and comforting, being such a rarity. He advocates a functional approach for all of his patients and carefully examines diet and lifestyle before even looking at the patient’s teeth. A thorough assessment of the teeth, gums, jaw, and throat are then performed as pictures are taken of the internal structures (not x-rays, he only uses these as a last resort).  

The dentist explained to me how I have these 2 amalgam fillings and one other one (a type of resin). The one on the left was damaged and visibly leeching mercury into my saliva. I explained to him that although my epilepsy is completely controlled through dietary intervention, I continue to experience seizure-like events daily with a battery like taste on the left side of my tongue (the filling leeching mercury is on the left I discovered). This happens at random periods daily but resolves itself spontaneously. The accompanying fatigue and brain fog is quite debilitating and sudden, but gradually I ‘snap out of it’ and its like nothing happened. It comes and goes in spells, always with the same taste. If it were general seizure activity I would suggest that it would take much longer to recover so perhaps my diet is acting as a plaster to lessen the damage. It also validates my recent use of chlollerra as a chelating agent and ensuring I have plenty of selenium in my diet. The damage to this toxicity however remains accumulative as I know so next week I will be having these fillings carefully and safely removed.

Situations like this make me incredibly disappointed as it will cost me a lot of money to fix something that isn’t my fault but is the fault of modern, western ‘civilisation’. It makes me slightly paranoid, not sure what medical professionals to trust. The ones you can trust cost a lot of money which is hard to find. It can be a double edged sword living in London in that respect. The system is flawed and although we have the NHS, which is great for many ailments, I won’t knock it for that, we need to leave the system and go private for these things to get the care that will save us rather than suffer the maladies of modern western care that is supposed to help us to stave off disease rather than contribute to it. Money Money Money?

The great news that this is a huge step forward for my long term health and despite the expected undesirable result of these investigations, I have already experienced how incredible the human body can be at re-adjusting, maintaining healthy homeostatic mechanisms once an assault to it has been removed. This makes me very happy and positive.

This procedure awaits me next week, wish me luck...

Amalgam replacement protocol

On day of treatment- high dose Vitamin C ideally 3g of slow release Vit C taken in 3 spaced doses
1. Pre-treatment ingestion of charcoal (belt and braces - in case any amalgam slips past protection) 2. Use of rubber dam - (isolates tooth from mouth and airway so debris not ingested or inhaled.
3. Copious water and high volume evacuation - (lowers atomisation and gaseous release of mercury) 4. Clean nasal air supply during removal - (reduces inhalation of mercury vapour) 
5. Supplement advice on clearing body mercury –  Chelation to clear as much free mercury residue from tissues/bloodstream - Selenium (best form is Selenomethionine) 20mg per day and continue for a minimum of 30 days. Chlorella 1000mg per day and again continue for 30 days
John Bell and Croydon Wigmore Street carry good stock and is a good online source 

This protocol eliminates the risk of increased exposure to potential toxins during removal.

Saturday, 14 May 2016

I'm afraid of heights but I did it!

It was challenging but well worth it. Thank you so much for all of your support and donations, I'm in awe of how much has been raised in such a short space of time. This money will go directly into research and if you would like more specific details I'm sure Brain Tumour Research would be more than happy to explain where the money is going. 

This is no ordinary cancer charity, they are quickly becoming like a family to me in how they are supporting both me as an individual and my metabolic approach to my individual situation. The work they are doing makes me so excited about the future because I believe that this way of treating cancer is the future and should be the present.

I know they are working very hard to make this a reality as soon as possible so I found my experience today incredibly satisfying with that in mind despite my fear of heights. It personified my journey in a way, a mini triumph over adversity and tough challenges, but there is a long way to go (its not just about me) and people who support me have played a huge part in that journey. Thank you once again, the support is overwhelming and I am incredibly grateful. I know the many patients and their families who are currently suffering from this disease or who have had loved ones taken away too soon will also be thankful. I believe we are taking steps closer to making this a thing of the past and for changing how we treat not only brain cancer but all cancers.

Friday, 13 May 2016

Very short notice- 3 year Cancerversary celebrations!

Very short notice but as part of my 3 year Cancerversary celebrations and to celebrate my last scan showing no disease and further improvement of scar tissue on MR spectroscopy I will be doing an abseil down the iconic Spinnaker Tower in Portsmouth in aid of Brain Tumour Research. I am incredibly passionate about the work they do and 100% of the money received by the charity goes directly into vital research. I have over 1,000 friends on Facebook, if everybody gives just £1 Brain Tumour Research will receive £1,000. I also nearly have 50,000 viewers of this blog which blows my mind but also thinks I can make a real difference to getting this promising research out there so it can eventually replace the standard treatment for brain cancer in time. This is what I firmly believe.

I guarantee that no money will be wasted and it is for a worthwhile cause. In addition I will be organising my own events to raise funds and celebrate my 3 year Cancerversary over the next few weeks in various locations.

It has been 3 years since my diagnosis. They couldn't remove the whole tumour but I have recently achieved my most promising scan yet showing no disease on MR Spectroscopy.

It is also worth noting that many other cancers become terminal once they spread to the brain so this work is of great importance to how we treat all cancers to improve prognosis and in future find a cure. We need money to fund clinical trials for these non toxic approaches that show so much promise so that patients don't have to use themselves as human guinea pigs without knowing what they are doing.

Please give what you can, I'll try not to kill myself leaping off the edge of the Spinnaker Tower. ;)

The iconic Spinnaker Tower in Portsmouth

Meeting my heroes and learning about exciting developments- clomipramine and the ketogenic diet.

Brain Tumour Research is one of the few charities I know that supports the metabolic approach to managing cancer through the use of novel agents and dietary intervention. Ever since I moved from The Royal Marsden to Charing Cross Hospital I have had continued support and encouragement which was previously lacking. This is the type of resistance I continually experienced 3 years ago but I soldiered on regardless, believing in what I was doing from the countless hours of research I had undertaken. I showed them all my research but they didn't want to change their opinion. I saw 5 different neurologists who all gave me the same responses. I've been off medication for a long time now despite being told I would need to be on it for life.

The move was truly liberating for me and I have worked incredibly hard to achieve the success that I have had over the last 3 years. It makes me emotional at times and on the verge of tears as I recall the resistance I initially experienced from various health professionals and then think about the incredible successes I experienced over the last 3 years both on scans and symptomatically. Experimenting and researching on your own when you are experiencing horrible seizures and debilitating symptoms daily tested my resolve and my conviction several times over this period.

After my mother was diagnosed with oesophageal cancer not long after my diagnosis as a consequence of her osteoperosis medication (we were actually able to prove this!) my resolve was tested further. She never smoked and seldomly drank alcohol, when she did it was simply a small glass of red wine. She has always been a picture of health and has followed a healthy lifestyle. Upon diagnosis of her cancer we asked about the pathology and the findings from the diagnostic endoscopy and found the following to be true in my mother's case:

'Oral bisphosphonates are known to cause serious esophagitis in some users. Crystalline material that resembles ground alendronate tablets has been found on biopsy in patients with bisphosphonate-related esophagitis, and follow-up endoscopies have shown that abnormalities remain after the esophagitis heals. Reflux esophagitis is an established risk factor for esophageal cancer through the Barrett pathway. It is not known whether bisphosphonate-related esophagitis can also increase esophogeal cancer risk. However, the US Food and Drug Administration recently reported 23 cases of esophogeal cancer (between 1995 and 2008) in patients using bisphosphonate alendronate and a further 31 cases in patients using bisphosphonates in Europe and Japan, possibly indicating risk of malignancy associated with bisphosphonate use.'

We noticed that time of use exponentially increases risk of oesophageal cancer from this treatment. This is never explained to patients as a risk factor despite a clear correlation and my mother was having this treatment over many months before stopping it after severe discomfort from damage to her oesophageal lining. After diagnosis we contacted the researchers of several studies showing this correlation and they confirmed our hypothesis for my mother's individual case following the biopsy results and presentation. We considered legal action and heard from patients in the U.S. who successfully sued the company but the cost was too much and the process too complicated to pursue things further. Another problem with osteoporosis diagnosis is that if you have East African bone structure (small bones with a slight frame) as my mother does, you will always be diagnosed with osteoporosis because you are compared with an average, younger white European woman. She is doing well now and we applied a metabolic approach to manage the disease.

I digress, back to Brain Tumour Research...

Yesterday I had the immense pleasure of meeting some of my heroes at the Brain Tumour Research centre in Portsmouth. It was incredibly exciting to meet pioneers in this field who are researching novel methods to treat brain cancer, away from the standard of care which has been a dismal failure for so many years.

I had so many questions in my mind that I wanted to ask the researchers I had admired for so long on my journey of managing my cancer as a metabolic disease. I was not disappointed and learned so much useful information for even the most devastating situations anyone could experience with this disease. It blew my mind how much these researchers are swimming against a tide of resistance and little funding yet achieving such remarkable things through tireless hard work, persistence, determination, and compassion.

As I arrived at the centre I was met by Tim Green who is an affable representative of Brain Tumour Research whom I had met before through volunteering at the London Marathon recently. I was then introduced to Professor Geoff Pilkington and Professor Helen Filmore which made me quite nervous as I admire their work so much and had so many questions in my head to ask.

A small group of us (6 people in total) then attended an introductory talk by Professor Pilkington, who went into detail about the incredible work Brain Tumour Research is funding. I have always been skeptical about where money goes for other charities, but never Brain Tumour Research as all of the money goes into work I support and every penny goes into the research, nothing else! The talk was primarily about re-purposing drugs using the right combination and the correct therapeutic doses for individual patients and different types of brain tumours. This is very similar to the famous Ben Williams approach, a drug cocktail of cost effective, non toxic drugs with a high safety profile. I try to copy the effects of this approach with a restricted ketogenic diet, fasting, supplements, and lifestyle adaptations.
Ben Williams is on record as the longest term survivor of glioblastoma multiforme, a uniformly fatal type of brain cancer. He devised his own treatment protocol in 1995 and after achieving complete remission he remains disease free to this day.
When I asked Professor Pilkington about other long term survivors he reeled off a few names who had astounding results and they all appeared to be doing the same kind of thing. One question I had was about metformin and the conclusion is that it is very difficult to get this to the brain and for it to be therapeutic even though it may help to lower blood glucose which can be desirable of course. It may be useful for other cancers, but perhaps not brain cancer directly. Treatments must always be personalised, considered, and at the correct therapeutic doses with the right combination of approaches. This can be a challenge!

The ketogenic diet, as I had suspected, is most likely more efficacious for brain cancer. The main benefit is that is mimics a fasted state, people are quick to forget this sometimes. He was also interested to hear about my use and timing of exogenous ketones (we know the ketones themselves have anti-cancer benefits irrespective of blood glucose readings- though obviously not too high!). I explained my entire approach, my type of ketogenic diet, use of hyperbaric oxygen therapy, fasting, and curcumin. I was applauded on my dedication and my ability to be proactive with this metabolic approach. I stated that I am continually trying to push myself and wanted to add more things to it but I was informed that you can of course do too much and sometimes, as I agreed, less is more.

What you don't do can be more powerful than you do and I narrow this down to a restricted personalised ketogenic diet, high DHA, curcumin, exogenous ketones at strategic time periods, hyperbaric oxygen therapy, vitamin D from the sun and natural light cycles, and fasting.

During the talk I was struck by how effective clomipramine + a ketogenic diet can have in a short space of time on recurrent glioblastoma, probably the worst situation you could imagine with this disease (horrific prognosis). Very useful information if you are only given a few months to live.

Clomipramine is a tricyclic antidepressant used for the treatment of obsessive compulsive disorder, panic disorder, and chronic pain.

'Prof Pilkington has been researching drugs called tricyclic antidepressants at the University of Portsmouth since 2003.'

'In the lab, clomipramine attacks the mitochondria of cancerous cells - the parts of cells that release energy from glucose, and power the growth of a tumour.'

The image below shows a patient who contacted Professor Pilkington after his astonishing results, this is not a one-off as many other patients have had similar results. There is continuing frustration with the clinical trial system, we need to be able to document all these success stories as a group as opposed to many individuals who are mostly self-treating themselves. It is very difficult to get trials for these low cost drugs with high safety profiles.

Results from right to left- patient had GBM treated with standard of care, tumour became more aggressive and highly vascular, then the tumour undergoes apoptosis (cell death) after intervention with the ketogenic diet + chlomipramine.
'Following your advice we started my dad on the ketogenic diet and after some persuatsion the GP prescribed clomipramine. It was an incredibly slow build up to the required dose, taking just short of 2 months to reach 200mg. To summarise briefly, my dad's oncologist asked to see him a couple of months ago and to say she was shocked to see him looking so well is an understatement. She requested a scan for him and we received the results from the scan last week and alongside the oncologist we were utterly astonished to see the tumour imploding! The tumour is less than half the size it was following his scan in July! In fact, it must have shrunk more than that because my dad wasn't on the full treatment of clomipramine until November, so presumably the tumour would have still been growing.

The oncologist calls him the 'miracle man' and she's astounded at these results. She has never seen anything like it in her whole career! She has requested that we put our treatment regime on the web, 'tell everybody' she advises, parting words were this could be the 'new gold standard'.'

The main challenge with clomipramine for brain cancer treatment is the side effects, particularly for brain tumour related epilepsy as it makes you more prone to having seizures. I proposed to Professor Pilkington that this could maybe be mitigated through high dose magnesium supplementation to mitigate this effect. He found this proposal very interesting after I had explained how magnesium chloride acts as a major application that I implement routinely to manage my own seizure activity. I also shared my experience with hyperbaric oxygen therapy, explaining that my experiences of seizure activity in the chamber was actually a positive thing to have as it showed the treatment was working, validating my approach despite being uncomfortable. As I reached a high level of blood ketones and adapted to the treatment my seizure threshold had increased. I suspected that similar adaptations could be made for improving tolerance to clomipramine for patients with brain tumour related epilepsy.

We then went on the discuss the anti-tumour benefits of sodium valporate and levetiracetam (two anti epileptic medications that have anti-tumour benefits- which is why they are prescribed for brain cancer patients), however I went on to explain how these drugs would be more effective in liquid form keeping in mind that the fillers of these drugs in tablet form make them anti-ketogenic (maize starch for one). I also personally believe that a quality magnesium supplement complements a ketogenic diet nicely as it doesn't give you any micronutrient deficiencies compared to anti-epileptic drugs, it keeps blood glucose low, and it acts as a central nervous system depressant to better control seizure activity.

After a lab tour we had the chance to ask Professor Pilkington and Professor Filmore questions about their work and I could write a book about that alone! There are so many promising treatments they are looking and it is remarkable what they can do with such little funding. These are my heroes and I really enjoyed my experiences being shown around the lab, seeing all the different ways to look at brain tumours, and gaining a better understanding of metabolomics, drug interactions, therapeutic dosages and applications of re-purposed drugs, challenges of treatment for different types of tumours, and personalised medicine. I am thankful for the opportunity to discuss these things with such inspirational individuals. The families who have funded so much of this research through the loss of loved ones are equally inspirational and I must express how grateful I am for their support in such difficult times.


Monday, 2 May 2016

Clock genes, chronotherapy, exogenous ketones, MRI scans

I filmed this last week, taking some time out of my pharmacology revision to talk about chronotherapy. I still have a lot to learn but I'm really trying to get to grips with this approach in order to apply all of the theories appropriately.

I described some of the adaptations I have made over the last couple of weeks to an important aspect of my metabolic approach, using myself as a reluctant human guinea pig as always. I will do anything to achieve the best result possible, however that represents itself.

If all this sounds confusing I would thoroughly suggest giving this consice article a good read!

Clock genes in the brain can be powerful therapeutic tools we can exploit with chronotherapy.

Some methods described:

The main thing I do is to supplement with exogenous ketones through habitual junctures consistent with theories I have predicted would present a chronotherapeutic benefit- ordinarily this is when the stress hormone cortisol rises to wake me up in the morning and then subsequently adrenaline rises (between 10am and 2pm for me as an individual- this is variable of course, biochemical individuality). Fig 1 provides an example we could use to display this idea for my type of epilepsy, 'reflex epilepsy'. Fig 2 displays hormonal fluctuations in a typical sleep-wake cycle with natural light cycles.

Fig 1: IMG-


I also use exogenous ketones with food when I am re-feeding after a therapeutic fast to mitigate the upsurge of growth factors that may occur as the body begins to metabolise food once more.

I will often combine use of exogenous ketones with apple cider vinegar, high dose DHA fish oil gel tabs, and curcumin as I believe they could have a symbiotic benefit. DHA complements ketogenesis and curcumin improved uptake of DHA to the brain and vice versa. I have written about this previously, backing these statements up with the relevant research.


I then described what chronotherapy is and how we may exploit the potential benefits to derive the most benefit. Carrying on, clock genes were introduced along with the role they play for cancer in general and for me specifically- The master circadian oscillator (the suprachiasmatic nuclei-SCN) of the hypothalamus.


I explained how this relates to me specifically-

Astrocytes exert several immune functions in the central nervous system (CNS), and there is growing evidence that points toward a role of these cells in the regulation of circadian rythms.