This is the third instalment detailing my FMT journey. It follows on from my blog post Trying To Fight Back. It spans the second six months of my FMT treatment plan. It has its ups and downs but it is a little less of a rollercoaster ride physically and mentally than documented in my previous two posts. I hope what I have written continues to be helpful to anyone considering or experiencing FMT, as there is still precious little information available about what happens to M.E. patients and their symptoms when they embark on Faecal Microbiota Transplant.
July - August 2017: So, did it really work?
BINGO! After a rocky six months, I finally felt like things had settled down. Mum continued administering my FMT at home. I could now go three weeks between implants before my improvement started to dip. I needed one week to get over each implant and had to deal with multiple symptoms including low mood, dyspepsia, sickness, even more inflammation of the gut and weakness but then generally I experienced two weeks of feeling a bit better. By FMT 10 (the amount I had done at home) and at the end of July I felt I had increased my energy levels by another 1%. So a total of 2% energy increase since December 2016, a reduction in light sensitivity, lower pain levels generally and a decrease in the severity of my headaches. I cannot describe how pleased with the progress I was. After 10 to 11 years of going downhill, with no cure on the horizon, this was akin to a miracle for me and my family.
By August these improvements in my energy, reduction in headaches and general muscle pains were fully cemented and I was less scared that it was just a fluke. I was convinced the FMT was working.
I had noticed a difference in how my body was feeling since the very start of my illness in 2006, even compared to the better times in previous years, when I had felt like my body was fighting to stay on a level playing field, holding itself up by a tiny thread. I had constantly felt like my body was fighting a losing battle against the deterioration that had been slowly occurring and had led my specialist putting me into the severe bracket of M.E. rather than the moderate-to-severe. In August I realised I no longer felt like I was trying to climb a nearly vertical slope. Perhaps this is the feeling of recovery? I don't know. All I know is my body felt different from how it ever had done since I first got struck down by glandular fever.
September/October 2017
We decided to try a holiday abroad at the end of August as my body had stabilised. I was not well enough to fly so we opted to take the overnight ferry to St Malo in France, and drive down to Concarneau to try and catch some hotter weather.
It was lovely to be away but sadly the 10-day break, the long drives and ferry trips left me feeling worse then I had accounted for. I did not recover well, in fact, I felt like I was deteriorating again rather than just needing extra long rest periods. I tried to go out a few weeks later but I had to cancel as all my symptoms were sadly worse than they were pre-holiday, even with doing 2FMTs during this time. I could feel my progress slipping between my fingers. It took me over a month to recover from my trip and I had experienced no positive results from an implant since July. I stubbornly tried another implant in mid-October determined not to let the last year be a waste of time and money.
Luckily for me felt like all my birthdays had come at once, as after the initial side-effects had died down, I felt an increase in energy and my body had the ability to recover from its post-holiday dip. My next treatment at the end of October gave me another boost just in time for a very special event!
November 2017 coping
Wow! I could not quite believe it at the time but I was well enough to attend a large evening party with a light, sound and lots of people for my dad's 60th birthday. I was very strict of course and scheduled extra rest for the weeks before and after the party. I was taking every precaution possible to not only protect my precious progress but also make it to the party.
I had a wonderful time and even did a speech. I was feeling up to continuing tradition, since about the age of five, that I am often the member of the family called upon to make speeches at all sorts of family events.
Much to my shock, apart from the expected immediate fallout, I coped very well at the event and it did not cause a full-blown relapse after the initial few weeks of recovery. I certainly would have struggled downhill if I had attended an event like this prior to going to the Taymount clinic. Things seemed to be continuing on the upward trajectory again!
31st December 2017 - An Excerpt from my FMT Diary
‘So, last week I did my final FMT of 2017. I cannot believe that it is just over a year to the day from when I headed on up to the Taymount Clinic, freezing cold, tired and overwrought from nerves to have my first implant. I am so grateful that the FMT I have just had has given me enough of a boost that celebrating Christmas has not affected me as much as it has done in the past. I am worn out but I do not feel like someone’s about to push me down a dark tunnel of a dreaded relapse.
I am off to Center Parts with Mum in a few days for a mini-break and although there is always a risk of it being the final straw, I really feel strong enough that I do not think it will cause a relapse. I hope in mid-January when I am writing in this little book I will confirm this belief. Most people can’t see my improvement over the last year. It is small in the scheme of things. It is hard to explain how I feel, and most people still don't really get that just sitting up in bed a little more often to watch TV, rather than lying down is a big deal for me. But it doesn't really matter what they think or the look of disappointment on their faces that I'm not cured or not out of my wheelchair- that is their issue, not mine, and I am so proud of how far I have come in the last year. It has not been easy and I have wanted to give up a lot, especially during the relapse periods in the first six months. My bank account has also seen much happier days but its worth every single penny I have scraped together to pay for it and so much more. So, year twenty-seventeen you have been an interesting one for sure and I am so glad that I have ended you better than I started, I hope the new year continues as well as this one has ended.’
View of the lake from Center Parcs apartment
(Number of FMTs December 2016 - January 2018: clinic + at home FMTs = 25 / at home FMTs = 16)
2018: Looking Forward and Looking Back
If you have made it to the end of this blog post I commend you as it is the third part of my FMT treatment plan. It has taken me many months to write but I really wanted to continue to document my journey publically as to just how Faecal Microbiota Treatment has affected my M.E. Initially I told very few people I was having this treatment when I went to the clinic because I was so nervous about it that I didn't want to answer questions, or have everyone waiting with baited breath when I got back to see if it had cured me. Frustratingly, I did have to deal with the surprise from people that knew I was doing it that I only had negative side effects straight away. There were some comments thrown around by some people about my attitude after the first few days at the clinic. They thought I was being negative in explaining how awful it all made me feel and, from others, confusion further down the line as to why I was carrying on when I had only experienced, in their eyes, no visible improvement. I think that the first year of treatment has shown that my body isn’t going to bounce back quickly. I have got a devastating long term chronic illness, no treatment currently available is going to fix all the problems it will of caused in my body overnight, no matter how much I want it too. Before I went to the clinic I decided that I was going to commit to trying FMT for the whole of 2017 and then I would choose my next steps based on that. It has been an easy choice. I have continued on with my treatment for the whole of 2018 and now when this will be published in 2019, with a little input from my M.E. specialist, I have found a balance that where possible having at home implants every 5 weeks is the way to continue. However, it is sometimes longer due to health flares, commitments, and financial pressure. This seems to feel right for my continued improvement or stopping me from relapsing depending on what has been going on that month. I think from documenting this journey it is clear that I suffer from side-effects straight after for a few days and then usually see improvements in my energy levels, but there are bad times too and it is safe to say these continued over 2018 and 2019. As I said in part one of this blog it was ‘a bumpy ride with some positive results’!
Thank you so much for taking the time to read this. I hope if you are thinking of embarking on an FMT protocol at the Taymount Clinic (or elsewhere) for M.E. it has given you some and hope and insight into what you might expect to happen.
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 endeavor to answer any questions. Keep a lookout for the next installment where I discuss milestone moments and symptoms in particular that have improved from my FMT treatment over the last two or so years.
@creating_rebeccah
Other Posts in FMT and ME Series:
FMT and ME: A Bit on the Side
FMT and M.E. Part One: Why
FMT and M.E. Part Two: Trying to Fight Back
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.
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