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.
At the end of my last Infusio update post, I mentioned that I had hit my first bump in the road following my ACT treatment. To recap, I did very well in the first four weeks after ACT. Unfortunately, in week 5 following ACT I had a whole bunch of symptoms crop up.
At its worst, I honestly felt as though I had been thrown back into the depths of illness. I had gone from feeling well to struggling to even get out of bed. Understandably, this was challenging both physically and mentally.
Today, I thought I’d chat more about my experience and how long it lasted. I hope that this will be helpful for anyone else who is going through treatment at Infusio or for anyone who is considering treatment.
What Were My Symptoms?
My symptoms felt like they started suddenly but, on looking back through my journal, I’ve realised they actually started more gradually.
I had been experiencing an increase in histamine reactions. Namely, I had itchy skin and was coming out in rashes/redness. One day my neck even randomly broke out in hives.
However, I didn’t think too much of this at the time since it was nothing new for me. I simply decided to start taking a Quercetin product called Neuroprotek. This is a histamine scavenger that can help to reduce reactions (more on this later).
There were also a couple of mornings where I woke up feeling a little heavy, tired and groggy. I didn’t think much of this either, though. Especially since I felt better once I was up and had eaten breakfast.
With hindsight, I think these were signs that something was going on with my body.
Pain & Exhaustion
The first symptom that really made me stop and take notice came a couple of days later. It was a Friday and I had gone about my day as usual. Then late in the afternoon, all of a sudden, I was in a lot of pain. And, I had no idea why.
It started on the left side of my ribcage and was a sharp, intense pain. The type of pain that meant it hurt to breathe. By nighttime, I was feeling absolutely exhausted and unwell too.
Then, the following morning, I woke up with intense pain in my neck and shoulders that radiated down my spine. It was so bad I actually couldn’t turn my head without being in agony. It was the worst pain I had experienced in a long time.
Randomly, I also had pain as well as pins and needles in my fingers.
Additionally, I found a yoga routine for neck and shoulder relief, which helped to improve the mobility of my neck. As I wasn’t feeling up to doing much, it also helped me to be a bit active.
None of these things took the pain away but they definitely helped to make it more manageable.
In addition to the pain, I felt as though there was a lot of inflammation in my body. My muscles started to ache and my brain became so incredibly foggy; I couldn’t remember anything and struggled to concentrate for any length of time.
As the pain finally lessened after a few days, I found my energy got worse and I felt more unwell. To add to the fun, GI symptoms cropped up too. I felt super nauseous and had pains in my stomach. My sleep also went a bit haywire (which of course wouldn’t have helped the fatigue). I’d have insomnia and then, come morning, I’d struggle to wake up.
Sleep aside, in general, my symptoms seemed to fluctuate a bit. They were always worse in the morning and then there would be a couple of periods during the day where they were less intense… before getting worse again in the evenings. But, I’m not going to lie, it didn’t feel like much of a relief and I was pretty damn miserable the whole time.
In short, I wasn’t having a very good time of it! I was spending most of my time on the sofa or in bed feeling garbage. To go from walking at least 5000 steps a day to this was not fun.
Questioning What was Causing My Symptoms
Initially, when the symptoms started I wondered if I might have picked up a virus but the more I thought about it, the more I felt it didn’t fit with what I was experiencing. I also realised my pain was located in areas where I previously had a lot of Fibromyalgia pain.
I, therefore, started to question if all of this could be healing related? Had I hit the “dreaded” neuro healing phase? I say dreaded as there’s a lot of negative chat about neurological healing in the Infusio Exchange Facebook group. And, for good reason I guess. It is not a nice process to go through!
If you’re interested, you can learn more about what neurological healing is by watching this webinar hosted by Infusio founder Philip Battiade. He explains it much better than I could here.
How Long Did the Symptoms Last?
When you are stuck in the depths of healing it can be so hard to see how you are going to find your way back out. It can be such a challenge mentally, so I thought it might be helpful to share how long my symptoms lasted. Though, bear in mind that everyone is different and some may go through this for longer.
Feeling a Positive Shift
Personally, I started to feel a positive shift after just over two weeks, which takes us up to present. My energy is better, my pain is lower and I am finding things easier again. I feel like I have a way to go before I am back to where I was before all of this hit. However, things are looking up again.
It always amazes me how quick symptoms can hit. And, subsequently, how quickly they can improve. Just the other day, I felt as though I was never going to get past this (yes, I know, I’m a bit dramatic at times!). I have to say, when that positive shift hits, it is such a relief.
I still Have Some Symptoms
I still have some brain fog (writing this post has been a bit of a challenge so I hope it all makes sense!), my sleep remains a bit disruptive and my muscles are a little achy still. I also still have a bit of a ‘hungover’ feeling hanging over me.
However, it’s nothing compared to how I was feeling and in the last couple of days, I’ve managed to go out for walks again. I actually overdid it yesterday as the weather was good and it was so enjoyable being back out again (lesson learned!). I’m sure with time and patience I’ll get back to where I was previously.
Just as a side note, I decided to stop the Neuroprotek supplement that I recently introduced. Although it helped with my histamine issues, I did question whether it was really agreeing with me (I started it shortly before all of this hit after all).
I actually found I felt better without it. I don’t believe it caused my symptoms but I do think it was making me feel worse than I needed to. I guess I’m sensitive to Quercetin.
Though I am now back to having more problems with histamine and being itchy etc. The joys of healing!
Infusio Home Program
Thankfully, Infusio has recently released a home program to help their patients with the issues related to healing after SVF, such as histamine. I’ve mentioned before that one of the reasons I really like Infusio is that they are always researching and looking for ways to improve their programs.
The home program is the latest addition. I’ve placed an order for the supplements and I hope to receive them soon. I am sure these will help me as I progress forward in my healing.
I may well have more dips along the way (this healing malarkey sure is challenging!). But, I’m feeling more relaxed and positive about things again.
To anyone who is going through a difficult time in their healing, hang in there and know that things will get better again.
Read next: An exciting milestone in my recovery
Read all of my Infusio posts here.