Sunday, 15 April 2018

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.

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)
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! 




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

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.

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