For those new to my blog, my diagnoses are Fibromyalgia and Lyme Disease. I went through the Integrative Lyme Disease treatment program at Infusio, Frankfurt in Autumn of 2017, which included receiving stem cell therapy. I had my follow-up appointment in February 2018 where I received a new treatment called ACT. I am sharing my experiences of the program and my recovery on this blog. Please keep in mind that this is my personal experience.
During my follow-up appointment at Infusio in February, I received a treatment called autologous cyto-immunotherapy (ACT). This is is an extract made from a patient’s own blood and contains beneficial cells such as macrophages and stem cells. You can read more about my experience of receiving ACT here.
Today, I thought I’d share an update on how I’ve been doing in the first month after ACT treatment at Infusio. If you read the post I wrote about my follow-up at Infusio, you will have seen that ACT had a positive impact on my wellbeing. Thankfully, this continued once I was home.
Weeks 1-4 FOllowing ACT
ACT Has Given Me More Energy
The biggest change I have experienced following ACT has been in regards to my energy. Following my treatment in February, I suddenly felt as though I had a reserve of energy that simply wasn’t there before. It felt so strange but absolutely wonderful.
The goalposts shifted and I no longer had the same energy limitations that I did prior to ACT. I was tentative about this initially. I was almost scared to test the boundaries and do more because past experience has shown me that this never ends well. However, this time it’s been different.
I began to gain more confidence in my body and my abilities and I tested the boundaries a little more each day. Now, don’t get me wrong, I don’t have an endless amount of energy. However, I’ve been able to sustain a level of activity that simply wasn’t possible before ACT.
For example, I’ve been getting out for walks with my dog pretty much every day. Usually for around half an hour but occasionally it’s been for longer. There’s even been a couple of days where I’ve done two walks in the one day! And, the strangest thing about it (which will only make sense to those of you living with chronic fatigue) is that these walks have made me feel better.
This has blown my mind. My brain almost can’t believe it. For years, any form of exercise (or just doing too much generally) has left me feeling very ill. To go out for a walk and feel energised and well afterwards is mind-boggling to me.
My Pain Has Not Been a Problem
Not only has my energy been better, my pain hasn’t been a problem for me either. I mentioned in my 100-days update that one of the symptoms that improved the most following stem cells was my pain.
This improved even further after the ACT and most days I haven’t been in pain at all. I haven’t had to think about pain and that’s incredibly freeing.
I have experienced some muscle aches here and there. However, this has been a normal pain that has been caused by doing more and building up muscle. It is completely different to Fibromyalgia pain and it’s only temporary. So no complaints from me.
Concentration has Improved Further
I’ve also been able to concentrate for longer periods of time following ACT treatment at Infusio. Most days, I have gone out for a walk in the morning and worked on blogging-related tasks for a couple of hours on my PC in the afternoon. This would have been impossible before (mental tasks affected me just as much as physical).
Even after stem cells, I usually wouldn’t have done both on the same day. I’d either use my energy to go for a short walk or spend it working on my blog. I had to balance the two. Recently, I’ve been able to do both without having to worry about payback.
Sleep & Mornings
I have continued to sleep well after ACT. My sleep had improved after stem cells, so there’s no real change there. What has changed is that I have been finding mornings much easier. If you have been following my updates, you will have seen me write that, at times, mornings could be a challenge for me.
I’m happy to say that I’ve been waking up naturally at around 8am and I’ve been finding mornings much easier.
CHanging How I Think
In addition to seeing physical symptoms change, mental changes have been happening for me too.
For years, I have had to adapt and change to live as well as possible with the limitations my body placed on me. This meant that I developed coping strategies that helped to minimise my symptoms.
For example, I spent the majority of my days resting to avoid post-exertion malaise and I had to pace every activity I did (even the simple everyday stuff).
And, whenever I did something out of the ordinary I had to almost micro-manage every aspect of it. How was I going to get there? How could I minimise how much walking I had to do? Would it be best to take a wheelchair? Will I manage the whole thing or should I come home early? How long will I need to rest afterwards to recover?
As much as I want to say my illness didn’t define me, it certainly defined how I lived my life. Now, that the goalposts have shifted and I am not experiencing the same limitations, my thought processes are slowly changing.
A New Adjustment
It’s an adjustment once again. I am learning a new normal and my brain is taking some time to process that and get used to it. I am having to learn to let go of long-held beliefs and accept that things are different.
It’s odd and it’s taking some time to get used to the “new rules” of my life. And, this doesn’t just apply to me but also to those around me too. Because for years they’ve been used to helping me out and giving me gentle reminders to slow down and even stop at times.
I’m also having to change how I think about any symptoms that do crop up. Because the symptoms I experience may actually be caused by healing processes that are happening in the body, rather than being caused by my chronic illnesses.
How I Have Been Doing in Week 5 After ACT
Hitting Neurological healing
Which ties in nicely with what I’m about to write, which is going to sound like it contradicts all that I’ve said above. That’s because things have changed a bit for me in week 5 following ACT. I’ve hit my first bump in the road, as it were. I believe that bump is being caused by neurological healing.
This is like a healing crisis where symptoms temporarily get worse as the cells in the ACT work on fixing problem areas. Dr Bijan explains this better than I can in this Facebook video. It seems that for me it has hit a few weeks following ACT rather than immediately after (everyone is different).
I’ve been experiencing an increase in pain (particularly around my neck, upper back and spine), tiredness, nausea, pins and needles in my hands and brain fog for the past few days. I’ve also been feeling unwell in myself and I’ve been a little off balance. The symptoms tend to fluctuate throughout the day.
I’ve been following Dr Bijan’s advice and taking some ibuprofen (which has helped, especially with the pain) and I’m being patient and hoping things get better again soon. If the symptoms continue into next week, I plan to get in touch with Infusio to see if there is anything else I can to do help support myself as I go through this.
However long this last, I know that I will come out the other side stronger. I will keep you posted on how I am getting on and if you would like updates in the meantime, be sure to follow me on Instagram.
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Read all of my Infusio posts here.