FMT and Me: Part One Why?

A few years ago my M.E. specialist started talking to me about gut bacteria. He said he was involved in clinical trials and needed to provide patients to take part. They would come to my house and take stool and blood samples from both me and a healthy control, preferably a blood relative and someone I lived with, that person being my mother (thanks mum, you are the best). The reason for the trials is there is more and more evidence that bad gut bacteria and toxins are possibly ruining the gut wall, aka leaky gut, of M.E. sufferers and then getting into their bloodstream, poisoning and inflaming the system. I quickly agreed to be involved in this research as it sounded very interesting, the theory was vastly more plausible than now the discredited PACE trials and I also have had a history of gut problems since birth so looking into the bacteria seemed like an exciting idea.


He then went on to tell me about a procedure called Faecal Microbiota Transplant which is more commonly referred to as FMT. The procedure effectively puts gut bacteria from a healthy person into an ill patient in an attempt for good bacteria to colonise and deplete levels of the so-called 'bad bacteria'. In simplistic terms, if a healthy gut microbiome is established, then the 'good bacteria' that maintains the gut wall, will be able to rebuild the intestines and stop any leakage. Also, the 'bad bacteria' will not be able to cause trouble as it should become outnumbered by the 'good bacteria', correcting any dysymbiosis.


FMT isn’t exactly new. It has been around a while and used for all sort of conditions, but it is not readily available in general medicine. Unfortunately, until recently, western medicine (and specifically UK medical thinking) has largely ignored gut bacteria as having any links to overall health or conditions that are not directly gut related (or in fact directly affecting the gut)! However, in relation to M.E. Dr Borody did a small trial many years ago in Australia among a small group of patients and found long term and short term improvement in some of the patients.


Research

My doctor said he would register me for the UK ME-Gut Bacteria trial but did not want me to think about FMT at this point in time until more information was collated on ME and Gut bacteria. So, what did I do? Sit back and relax? No. Alongside taking part in the trial, which I donated several times over the next year or so, I spent several months doing tons of research on re-establishing a healthy gut microbiome through FMT. At my next appointment with my ME specialist, he brought up FMT again and was really keen for me to try it at home, myself, and knowing so much about the treatment I said I would try it. But here's the thing, in order to do this, I would have to find a donor, of about 5 - 10 years old who was healthy and who would collect their faeces so I could then freeze them ready to be whizzed up with some saline solution. I would then give this to myself in an enema. Not only did this horrify me, but I couldn’t imagine having to ask someone for that. Also after further research, I was really unhappy that there was a strong possibility, without multiple tests on the person giving me their bacteria, that I could end up even more unwell or with more conditions. Was the risk worth it, I wasn’t so sure?


So I went back to research and found that there was ONE clinic in the whole of England that offered FMT. The clinic is called The Taymount Clinic and located in Hertfordshire, a couple of hours away from me. After much umming and ahhing, discussion with my parents, and a little bit more research, specifically into the credibility of the clinic and its history, I decided to take the plunge and have a phone consultation with them. It took a couple of months to get an appointment on the phone and I was incredibly nervous. Even though I had a lot of knowledge on the subject now, especially as I had already donated samples to the gut bacteria trials and talked extensively to the researchers when they came to my house, I had some questions about the treatment. Mainly had they treated anyone with ME before? Yes, they had and yes, some had seen improvements. However, due to laws and regulations surrounding non-medical treatments they could not really say they are able to treat specific conditions (apart from C.difficile) or really give too much detail specifically about my condition and FMT. Legally all they could really say was that the clinic could improve a patients gut bacteria, help them maintain it and that

'academic and medical research indicates that gut bacteria may play a significant part in alleviating the symptoms of…:

Inflammatory Bowel Diseases (Crohn's Disease & Ulcerative Colitis)
Constipation
Chronic Diarrhoea
Irritable Bowel Syndrome - IBS (Post-Infectious, Post-Antibiotic)
Neurological conditions such as:
ME (Myalgic Encephalopathy)
CFS (Chronic Fatigue Syndrome)
MS (Multiple Sclerosis)
Parkinson's Disease



Gut microbiota has been linked to a number of conditions and as such, it is an exciting time for this emerging new treatment'. (Taymount Clinic, 2018)


They also say they found a third of all patients saw changes almost immediately during the initial treatment, a third of patients saw a change in their condition several months after treatment and a third of the patients sadly saw no improvement. To me, that gave me 66.66% chance of making some improvement. They also thought I would probably fall into the second category of a longer period of time before I saw any benefit due to the complicated and long-term nature of my M.E., fibromyalgia and severe bladder and gut problems.


I agree that their information on how it might help people might sound underwhelming due to what they are allowed to say legally, but if this interests you I highly suggest you check their website for more detailed information about the treatment (and costings). I also recommend their youtube videos for patient success stories, experiences and further information from the clinic. They answer every question under the sun and do give a lot of information before you even have a phone consultation.



Decision Time
My phone consultation was interesting, it put my mind to rest about the legitimacy of the clinic- anywhere that doesn't tell me they have a miracle cure for ME but might be able to help in some way- is somewhere I feel safe. My consultation was about 30 minutes long and at the end they were able to say that because of my long-standing stomach problems and long-term chronic illness I was considered a suitable patient to come to the clinic.



The Start of Something
When I had my phone appointment I had much been ill for 10 years and my M.E. was pretty much at its worst, give or take. I have tried various small-scale things over the years and even tentatively looked into travelling to the states for intensive IV antibiotic treatment that is used on Lyme patients and costs tens of thousands of pounds. Nothing had really appealed to me or sounded like it might work and nothing I have tried made me any better overall. I needed to try something and this was it. What was the worse case scenario? That it may only help my stomach problems? Wouldn't help for one of my multiple conditions/symptoms improve my quality of life? After a couple of days to think it over, I booked myself in to have two weeks of treatment at the clinic. We had to stay locally in a hotel the week before Christmas and then the week after New Year. The whole experience was tough on my body, but the staff at the clinic were so kind, sympathetic, knowledgeable and I felt as soon as I arrived I was in safe hands!


As I am not a doctor or any kind of medical professional I would prefer not to detail my experience openly on here. However, please feel free to privately contact me on my blog or message me on social media accounts which I will link at the bottom, and I will endeavour to answer any questions. Also, as mentioned before please look at the clinic's website for their more detailed information on the clinic and FMT procedure.


I am planning to write another post on what happened after my treatment and how my body reacted So keep an eye out for the next instalment, I promise it is a really interesting account of the next 12 months after my initial treatment and will be ready as soon as my energy levels permit. I will say it is a bumpy ride with some positive results! 

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Other Posts in FMT and ME Series
FMT and ME: A Bit on the Side
FMT and ME: Part Two Trying To Fight Back
FMT and ME: Part Three Did It Work
FMT and M.E. Part Three: Where Do I Go From Here

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I am not a medical professional and nothing here can be taken as medical or health advice, so check with your doctor before following any information in my blog.

FMT and Me: A bit on the side Gut Bacteria

This blog post is a little tag on to my series about the recent treatment I have been having and research I have been involved in. I hope to explain the basics of gut bacteria as a reference for my other blog posts on the subject of FMT.

Over the past few years, there has been a lot in the UK press about gut bacteria and why a healthy balance is just so vital to everyone's health. I was also introduced to focusing even more on it in relation to my condition(s) when my M.E. specialist asked me to take part in a research trial linked to ‘leaky gut’ and M.E.

I have done lots of research into all aspects of bacteria in our bodies and as I have built up a wealth of knowledge it makes sense for me to write a little bit about it. However, I keep getting so bogged down in so much of the science I have written and then scrapped multiple blog posts about it. In an effort to actually produce something I decided to break it down into a smaller post and focus on what exactly is gut bacteria, that can be used as a general reference to my pieces on here about gut bacteria and M.E.


What is gut bacteria?

Our human bodies have bacteria both on the inside and outside. There are many different species of these bacteria and they all have different jobs to help maintain and protect our bodies. By far the largest source of this bacteria is located in our guts, in the large intestine. To try and give you some perspective on just how huge it is, there is about a ratio of 1:3 bacteria to every human cell. The numbers are in the trillions, so it is really hard to envisage. Sounds scary, especially when in the western world, there is an impression that all bacteria is bad, but don’t worry it’s not.

Most bacteria in a healthy body affects us in a positive way, for example, keeping the immune system strong, manufacturing and processing hormones, such as serotonin, to give us a healthy, balanced emotional state, digestion, detoxifying matter that enters the stomach and keeping the lining of the gut wall thick and strong.

In relation to this you may have heard people refer to a healthy gut microbiome and this is simply the collective term for all the different types of microorganisms that essentially create a mini-ecosystem in the gut. It is important to understand that this awesome ecosystem also includes fungi and viruses, but most of the time, with a healthy lifestyle and strong immune system we are not vulnerable to them, especially if the balance of bacteria is right!

Everyone's gut has its own unique microbiome and a healthy body lies in the diversity and number of bacteria present in the large intestine. When we are born, our microbiome is formed from the bacteria present in our mother's vaginal passage and it is a powerful asset in developing a strong immune system. This is why babies born via caesarean section are given a swab of bacteria, taken from the mother, to try and give them the same immunity as a naturally born baby. After this, it is up to us to nurture the gut bacteria. This is done mostly through diet. This diet needs to be varied, as natural as possible and highly nutritious, which is not the common diet in our culture anymore. Unfortunately, refined foods, processed foods and foods with added ‘chemicals’ are being proven to seriously damage the microbiota. Often these foods are eaten over and above natural, healthy foods and this combination can seriously deplete colonies of beneficial bacteria. Also, the high usage of antibiotics for any illness going (and antibiotic residues found in non-organic, intensively farmed meat, dairy and food grown with pesticides) can wipe out how species and colonies of bacteria.

Modern life seems to be quite quickly damaging a part of us that is so vital to good health. Much of our health is outlined in our genetics but gut bacteria is also responsible for modifying genetic activity, for example, it can turn genes and systems on, off, up or down. If beneficial bacteria cannot thrive and large amounts of the wrong kind of bacteria or beneficial bacteria are changed it can affect our genetics and bodily systems in really negative and disastrous ways. More and more research is being done that is identifying gut bacteria as playing a huge role in lifelong, serious chronic physical and mental health illnesses, as well as in general ill health.

As you can imagine this topic is vast and can get very technical. I hope that my short summary above has helped give you a basic insight into what people are referring to when they talk about gut bacteria. As mentioned at the top of this post, I have actually gone down the gut bacteria route in order to help my M.E. If you would like to know more about my experience, I have written a series of blog posts on my treatment, starting with 'FMT and ME: Part One Why?'.

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I am not a medical professional and nothing here can be taken as medical or health advice, so check with your doctor before following any information in my blog.

Macadamia Cream

This recipe is: Gluten Free, Dairy Free, Low Fodmap, Suitable for Interstitial Cystitis, Paleo, Vegan, Refined Sugar Free and Grain Free (can be No Added Sugar)

Scroll to the bottom of this post for ingredient tips

Ingredients

• 90g Macadamia Nuts (pre-soaked in boiling water and 1/2tsp salt for 3 to 4 hours)
• 180 ml Almond Milk
• 45g Coconut oil (melted) 
• You could sub coconut oil for cacao butter but this will set to a much thicker consistency
  
• 1.5 tsp Vanilla extract/seeds from 1 vanilla bean
• 0-4tbsp Maple Syrup (optional: depends if you have a sweet tooth)
  

Method

1. After you have soaked your macadamia nuts for 7-12 hours drain then and give them a quick rinse.
2. In a nutribullet (or food processor) add the macadamia nuts, almond milk, vanilla extract and melted coconut oil and blend until smooth and creamy. If you are using a small food processor or nutribullet you might have to keep stop and starting it so it does get too hot (as eventually that will break the machine)
3. Taste the filling. If you want it sweet add maple syrup a tablespoon at a time and process again until you read your desired sweetness. You can have a play around here depending on what you are using your filling for as you could add flavourings here such as rose water, frozen strawberries/raspberries/blueberries, raw cacao powder etc.
4. How to use:

• Store in the fridge for a lovely 'pouring cream or custard'

• Put in freezer for about an hour for a thicker, more stable cream and you may need to thaw it slightly then use to top or fill a cake (as I did here) or sometimes if using Cacao Butter then put in the fridge for a while. It really depends on the temperature of your kitchen, fridge and freezer!

• To makes a glorious alternative cheesecake topping for those who are dairy-free, low fodmap, just add your desired flavourings (e.g. frozen raspberries, cacao powder or liquid sweetener and whiz up) then pour over a cheesecake base and place in the freezer for 2-3 hours and bring out for at least 10minutes before serving for a creamy cheesecake consistency

INGREDIENT TIPS

- ALMOND MILK
Try and buy a brand with no preservatives or sweaters added such as Rude Health, Plenish or Provamel or make your own

Sprouted almonds, coconut sugar, chocolate (raw cacao butter, raw cacao paste, raw cacao powder), raw coconut oil, salt, revitalised water

- ACCESSING SPECIAL INGREDIENTS
All my ingredients were as pure, unrefined and organic as possible. They are all gluten free, dairy free and refined sugar free. It is much easier than it used to be get hold of these types of ingredients these days. You can get a version of all of these ingredients from Ocado, but also some good shops to also look at, which you can find online, are Holland and Barret, The Raw Chocolate Shop, The Raw Chocolate Company and Raw Ecstasy. Of course if you can get to your local independent health food shop they will probably be help you with these ingredients too.

- QUALITY
All my ingredients were suitable for Coeliacs and mostly organic. By the best quality ingredients you can afford but most importantly check the labels to make sure what you are buying is as natural as possible for a better tasting cake and, of course, good health.



(N.B. I love to bake but due to being house and bed bound most of the time it's not that easy so all the recipes are on here are a collaboration between my mum and I. Most of the time that means me wrapped up in a blanket and instructing her as she goes along, but it seems to work and is a lot of fun doing it together.)