Thursday, 2 May 2019

FMT and ME: Part Two Trying to fight back

This post is the second instalment of my FMT journey. It follows on from my initial blog post-FMT and Me: Part One Why?. It spans quite a turbulent period in my health physically and mentally which has been tricky to write about without re-opening too many old wounds. I hope what I have written below is informative and helpful, as I could not really find any information online about what happened to their M.E. symptoms during and after FMT treatment.

Immediate and ongoing side-effects

I will start by explaining a bit about the immediate and longer-term side effects from each time I did/do an FMT.

Some people experience an immediate boost in energy and a lessening of symptoms a couple of hours after their FMT implants, sadly I did not. I suffered quite badly after each of the initial implants at the clinic and continued to experience unwelcome side effects after each at-home treatment too. I have listed a lot of the severe and immediate symptoms I suffered below:

I had 9 implants at the clinic and at the time of starting to write this blog post 19 at-home treatments administered by my mum. However most of the worst side effects (as above) have now lessened, and now I only really suffer straight away from excessive bloating, a small amount of cramping, fatigue with a bit of shivering thrown in and 5 to 7 days of exacerbated nausea, extra bloating and very low mood.

December 2016: At the clinic
My initial treatment plan was as follows:
Colon Hydrotherapy/Irrigation
5 transplants over 5 days
10 days rest
4 transplants over 4 days

I did experience a lot of side effects which only worsened after every day of treatment. I was required to stay away from home in a hotel during both sets of transplants for a while which naturally made my M.E. worse. I am also not used to having to leave my bed, get dressed and go out every day, so my pain and fatigue increased massively as well as my other symptoms. I am sure this contributed to the overall severity of my reaction to the FMT treatment. The symptoms that were exacerbated the most were as follows:

  • Longer periods of excessive bloating
  • increased dyspepsia
  • painful trapped gas up into my chest and shoulders
  • dizziness increased
  • nausea exacerbated
  • extra weakness
  • disorientation
  • faintness, weakness and dizziness increasing in the evening
  • inner ear symptoms making me feel like I was on a ferry on a very rocky seas
  • extreme agitation, distress, depression: resulting in random outbreaks of increased crying. I was well aware of the gut-brain axis and how the microbiome directly affect mood but nothing could have prepared me for just how badly a disruption in my gut, with the new bacteria trying to populate it and fight off any unwanted bacteria, would leave me completely mentally out of whack (mindfulness does not cut it in these instances)

January - February 2018: Initial Reactions
I never expected the first few weeks after the initial treatment to be easy and it was not. My body needed time to recover after the strain of going to the clinic and my gut felt like it was in shock whilst an epic war of different bacterial species raged within me.

A few weeks after my treatment, the twenty-third day into January to be precise, I had pushed myself to go downstairs and watch 15 minutes of TV on the sofa and I had the strangest feeling. It is hard to describe as it was a mixture of many different emotions. I felt at peace, ecstatic, clear-headed, pain-free and light all at once. It felt like I was having an out of body experience for about five minutes. Then suddenly I felt extremely odd, and not in a good way, and all my M.E. symptoms came crashing down over me like a wave followed by a swell of hysterical, desperate crying. I now know that the almost indescribable first five minutes is what people with M.E. describe as the ’moment’. It is something I have heard about it on the grapevine and directly from people have experienced it. It was very brief, but just for a moment, it felt like all the wires in a circuit were connected perfectly. Unfortunately, and rather too quickly, it felt like someone came along and tangled up all the wires up again putting me back into my normal state. It was utterly exhausting as it had zapped any little energy I had before it had happened. At the time I was confused and distraught. However, the next day, I was hopeful that this moment I experienced might be a signal that maybe my body was ready to start recovering? Was it too soon to hope that something was changing after all these years?

As the weeks went by I was still experiencing side-effects from my initial treatment and my extremely sensitive stomach was becoming more unresponsive to my usual medication and even my safe foods were irritating my stomach more than usual. Alongside this, my initial low mood and feelings of agitation became even worse. To the point where I would describe my feelings as a deep gut-wrenching loneliness and despair. The only way I fought my way through these feelings was being able to reason it out and hang it on my gut microbiome still being up in the air. I hoped that when it settled down my mood would change for the better.
There was a little ray of sunshine poking through the bleakness though. Both my mum and I noticed that my headaches had decreased in occurrence and sometimes were not quite as bad. Not only has having less pain come as a relief, but it also meant that I have been able to tolerate little bits of extra light better over my whole body and eyes.

When you have a chronic illness though nothing is straight forward and my body began a backlash. I started to spiral into a relapse. I noticed the warning signs from multiple other past relapses and I knew what to do to try to ward it off. Thankfully my headaches stayed at their improved level but I became even more fatigued. I could not even tolerate my usual weekly massages, my bladder pain seriously increased and my glands swelled up more than usual. At this point I cleared everything in my diary, trips out, visitors, things I wanted to do at home, any admin, anything, even limited my tv time down even further. I was doing everything I could to avoid my illness becoming even worse.

March and April 2017: Experimenting

Despite my precautions I just kept deteriorating. Then my body clock flipped and I couldn’t get more than a couple of hours sleep at night, at best, and I was in too much pain to sleep in the day. That is when my mum took charge. I had bought several FMTs back from the clinic, stored in the freezer, ready to use, so mum said what have we got to lose by trying one now? I had hoped to have my first one in about April when I felt strong and stable. I did not feel strong or stable. I was reluctant. But mum went based on the evidence that before I started to relapse my headaches had improved and I had the ’moment’. It was worth a try… and I needed to do something to stop my spiralling symptoms.
So on 4th March 2017, we did my first FMT at home. For several days afterwards I had all the side-effects I had at the clinic, and it drained my energy even further. I was worried that the downturn in symptoms had turned into a long term relapse. However after a few days, I woke up and I hadn’t gone downhill any further, another day passed and I felt the same as I had the day before. So one week after my first at-home treatment we did another one. Yes, I had side-effects from the actual implant and incredible weakness for 24 hours after but my overall state of health had not got worse. Finally, months after going to the Taymount Clinic I felt my body had stabilised itself. The roller coaster ride and paused. I could catch my breath. I was relieved but still suffering in a deteriorated state of health. I could not cope with much stimulation and still struggled to leave the house. I then decided to do three more implants spread over the rest of March and April as I felt that too long in between would lead to my body going downhill again.

May 2017: My Treatment Plan
Then, after number 6, both my mum and I noticed that I seemed to have an increase in my stamina. It was very minute. If I had to put a figure on it I would say perhaps a 1% increase. I know this sounds negligible but when you have spent the best part of a decade getting more and more unwell this really feels like a huge improvement to my quality of life. I observed that I was able to sit up in bed for slightly longer periods of time and lying on the sofa occasionally was a tiny bit less exhausting. Although some days were still as bad as they had been before I had gone to the Taymount clinic, I was very quietly pleased with the progress I was experiencing some days and it gave me the courage to continue with my treatment plan. I was so confident in my progress I could start to structure my day again. I could start to add in slow gentle stretches lying in bed after I woke up and several periods of planned mindful meditation throughout the day. Or so I thought. This increase in activity caused muscular strain. I developed extreme pain in my QL muscles on my right side causing me to only be able to lie on my right side day and night for three weeks barely leaving the bed (only to use the bathroom). Sound and light sensitivity got worse again because my body was using all its energy and resources to cope with the pain. Eventually, when I had regained some strength, I made it to see my chiropractor for several sessions and thank goodness he sorted out the pain for me. May had started off well but ended in a bit of a mess and the most frustrating thing was I could not have my FMT during this time so I felt my newly stabilised body and 1% energy increase slipping away from me.

June 2017: Hanging-on
I refused to let the end of May and beginning of June stop me from making the most of my FMT treatment. I said that no matter what I would try and use it to get better for the whole of 2017 before I assessed whether it had helped and if it was worth continuing. So by mid-June I was up to 10 at home transplants and my increased 1% energy was less sporadic. Most days I felt I had extra energy and a slight decrease in pain levels in my body allowing me to start lying on the sofa regularly once a week and occasionally sitting in a comfortable chair for a little bit. The best bit was after I had done these things I did not feel like death afterwards.
Physically I had improved. But mentally things had taken a turn for the worse. If anyone needed living proof that gut bacteria affects mental health, I am your girl. Not only after every implant so far had I experienced a huge dip in mood for a week and heightened anxiety, in June it got a lot of worse. I started to cry for most of the day, for days on end. It would not be long after I would wake up that the distress and tears would start and pretty much carry on for most of the day. I felt so strange. On the one hand, my body felt better than it had in years but at the same time, I had the continual feeling of gut-wrenching loneliness and depression. It was horrendous. After a couple of weeks or so my mum took control (AGAIN!) and said if it carries on too much longer we would go to the GP. I had an appointment booked but before I could get there my mood lifted. I stopped crying and my feelings levelled out.

What next
Had things really changed in the long term? Was this going to be a case of one step forward and then one hundred steps backwards? It is safe to say the first six months of my FMT were intense and interesting. If you would like to find out if these small improvements stayed in the longer term and if I felt any further benefits I will be posting Part Three soon and I promise it is a less bumpy ride.

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 in Part One please look at the clinic's website for their more detailed information on the clinic and FMT procedure.

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 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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