Read all of my Infusio posts here.

Sharing how my symptoms have changed 100 days following stem cell therapy at Infusio, Frankfurt. #lymedisease #stemcells
Photo credit: Tim Wright via Unsplash.
This post contains an affiliate link where I may make a small commission at no cost to you. Click here to read my full disclosure policy.

Prior to heading back to Germany for my follow-up at Infusio last month, I spent a bit of time going through my journal and jotting down how my symptoms have changed since receiving stem cells. I appreciate that those who are looking into stem cell therapy at Infusio like to know how people do in the initial 100 days following treatment. So, I thought I’d share this here.

It’s important to say that stem cells are a year-long process and not everyone sees improvements quickly. Sometimes it can take months to truly feel the benefits (especially if you have lots of neurological symptoms). So, if you are reading this post and you’ve already had treatment at Infusio, please do not compare your progress to my own. We are all different.

How Recovery Tends to be Following Stem Cells

Following stem cell therapy at Infusio, there tends to be two groups of people observed. The first feel better when they leave the clinic and they continue on that upward trajectory. The second, go through periods of ups and downs; they feel better, then crash, then feel better again.

I am firmly in group 2. However, for me, the ups have been better than they were previously and the downs weren’t as bad as they used to be. I have journaled my progress over the first few months of stem cells, so if you would like to know how I’ve been doing in more detail you’ll find these updates here.

How my Symptoms Changed in the 100 Days After Stem Cells

Today, I am going to share an overview of how my symptoms have changed during the 100 days post stem cells. I won’t be going into detail of every single symptom. Rather, I’ll give an overview of the main ones. This was written prior to my follow-up at Infusio (I’ll be writing all about that very soon).

Physical Energy

Fatigue has always been my worst symptom by far and my energy has been up and down during the 100 days post-stem cells. I’ve had days where I’ve been overwhelmed with fatigue but, when this lifts, it tends to lead to improved functioning. I would say that, in general, I am functioning higher than I did prior to stem cells in that I am able to do more for myself.

On the better days, I am able to go out for a short walk and feel good doing it; something that would have previously left me feeling unwell and suffering from post-exertion malaise. Prior to Infusio, I used a mobility scooter if I wanted to get out and walk my dog. I haven’t used it since I’ve been to Infusio.

The fatigue feels different now too. Prior to stem cells, it was very much a horrible, all-consuming flu-like fatigue. It’s hard to describe in words. Some days it wouldn’t be so bad but others it felt truly awful. Following stems, this flu-like feeling has lifted. Some days it’s not there at all and I feel well in myself. Other times, it’s there but it’s much milder.

I’d say that in general, the fatigue has been more like complete exhaustion and a need to sleep when it hits badly. I do think a lot of this has to do with healing; my body is putting it’s limited resources into healing and repair, leaving me with little energy left over.

Mental Energy

I have seen some really positive changes with regards to mental energy. The fog has lifted and I am able to concentrate better. I can also concentrate for longer periods of time without any payback. I used to get post-exertion malaise from mental tasks as much as I did for physical activity.

My short-term memory can still be a bit rubbish but it’s nothing that is concerning me. It’s just been moments here and there when I have forgotten what I just did or can’t remember what I was about to do. It does come back to me eventually though.

I’ve also had moments where I’ve literally forgotten how to spell simple words. I found these funny more than anything.

Pain

My pain is much improved. This has been one of the biggest improvements for me and one that has significantly improved my quality of life. When I first went to Infusio, pain was one of the top symptoms I told Dr Bijan about.

The widespread, aching pain that I would refer to as my Fibromyalgia pain has greatly improved in particular. It’s either low (and doesn’t bother me) or it’s gone completely. I still have some lower back and pelvic pain. This is something that has long been there but I am more aware of it now that my Fibromyalgia pain has improved.

My muscles can also still ache but this has been from using them more! I do need to build up the strength in them. Interestingly, this feels completely different to Fibromyalgia pain. I’d say this is a normal pain that anyone would experience when they start to exercise again.

Mood

My mood has been up and down during the 100 days. I would take a mental dip each time I did physically. However, in general, I feel much happier and have felt a joy and motivation for life returning that has long been missing. It’s been missing for so long I didn’t even realise how I previously felt wasn’t ‘normal’.

It’s been such a relief in a way because I honestly felt like I was going through life and not enjoying things as much as other people. There was a level of satisfaction and enjoyment that was simply missing. It’s hard to put this into words but I hope you can understand what I mean.

I also feel as though more of my personality is coming back (again, I wasn’t aware of how much of me had been missing). I’m talking more, laughing more… it’s wonderful.

Orthostatic Intolerance

I had autonomic dysfunction and would struggle with sitting up and walking for any length of time. Doing so left me feeling really unwell. This improved pretty quickly following stem cells. I can now sit up for hours and have been blogging and gaming sitting up at my PC; something I simply could not do before.

I also feel fine when I go out for short walks. My heart no longer races and I don’t hit a wall where I suddenly feel the need to lie down anymore.

I am less aware of my heartbeat in general. I used to be so aware of it, pretty much all of the time. I used to also hear my heart beat pounding in my ears whenever I lay down. And, my heart would race a bit at night when I lay down to go to sleep.

One day, this just stopped. It wasn’t there anymore. It was so strange and I found myself constantly checking my pulse to make sure everything was okay, haha! I guess this has maybe been something to do with blood pressure and, whatever the heck my stem cells have done, seems to have fixed it.

Sleep

I did a lot to improve my sleep prior to going to Infusio and I felt as though I was sleeping well. However, since treatment with stem cells, my sleep has been even better. I am getting much deeper, restorative sleep and many nights I sleep right through until morning.

Eyes

I had very dry eyes and for years I used artificial tears around 4 times daily. This has greatly improved. I am using the artificial tears once or twice a day at most. Some days I don’t need to use them at all.

Altered Sensations in My Left Leg & foot

Many years ago, I developed neurological symptoms on the left side of my body. I had pins and needles, bouts of numbness and a change in sensation in my left leg and foot. Over the years that I took herbal therapies, this did improve. However, that altered sensation on the outside of my left leg and foot remained.

It’s hard to put into words what this felt like. I was just very aware that it was different and it felt horrible when touched. However, I’m pleased to say that normal sensation is returning in my leg and foot. It’s not quite 100% improved, but it’s getting there and it no longer bothers me.

Symptoms that still need to improve

There are still some symptoms that I would like to see improvement in over the coming months. The top 3 are:

  • Energy: although this has improved, I’d like lots more of it and I’d like it to be consistent.
  • Gut problems: I still have food intolerances and occasional bloating caused by leaky gut.
  • Histamine: Related to my gut, I am having histamine reactions to certain foods and I’d like this to improve (though I appreciate that histamine can be related to healing processes). It isn’t as bad as it was right after stem cells– and a low histamine diet helps– but ideally, I’d like to be able to eat what I want without having to worry about this issue.

I also haven’t seen any change in my tinnitus. Although I can live with this, if it improved that would be an added bonus.

Random Symptoms I Experienced During The 100 Days

I thought I would end this post by jotting down some of the random symptoms I experienced during the 100 days after stem cells. Some of these were fleeting, others lasted a few days or more, but they all eventually settled down and disappeared. Interestingly, many were symptoms I have previously suffered from; it was as though my body was revisiting old symptoms at times.

I thought I would include them in this post as it can be worrying when you go through it. I figured it might be helpful to know that you aren’t alone and that these symptoms were temporary for me. So, in case it is helpful for anyone, these are the symptoms I personally experienced:

  • Headaches
  • Neck & shoulder pain
  • Muscle twitching
  • Electric shock type feelings
  • Tingling, pins and needles
  • Skin breakouts (spots)
  • Rashes, redness, itching (histamine– isn’t as bad but still a work in progress)
  • Anxiety
  • Depression
  • Mood swings
  • Acid reflux
  • Nausea
  • Very vivid dreams and nightmares
  • Hot flushes
  • Night sweats
  • Muscle weakness

If you have been through stem cell therapy I’d love to hear how you are doing in your recovery. Or, if you are considering it, I hope that you found this post helpful.


Share on Pinterest:

Learn how my symptoms have changed 100 days after stem cell therapy for Lyme Disease. I had treatment at Infusio, Frankfurt. In this update, I share how treatment has changed my symptoms. #lymedisease

Read all of my Infusio posts here.

7 Comments

  1. So happy to hear these improvements Donna!! Thanks for sharing about this treatment. Some of your improvements mirrors what I have found after a year on low dose naltrexone 🙂

    • Hey, Melissa! Thank you. That’s interesting to hear that the improvements mirror the same you have found with LDN. I guess whatever LDN works on has been similar to what my stem cells have been fixing 🙂 Interesting to know!

  2. Hey Donna, due to reading your amazing blog I’ve just ordered a Lyme disease test from medichecks. I’m so sick of feeling awful, I turned 30 in November and I’m so fed up of watching e erryone else have a life around me! Thank you so much, without the blog I’d never know about infusio, Lyme or medichecks.

    • Hey, Erin! I’ve used Medichecks many times (mostly for thyroid-related things and also to get the tests I needed prior to my Infusio follow-up) and always find them great :). That’s interesting they offer Lyme testing too! Good luck and I hope it gives you some answers. I’d definitely recommend picking up a copy of a book called Unlocking Lyme and giving it a read regardless of what your test result comes back as. I think you’d find it a helpful and insightful read 🙂 Thank you for your kind comments about my blog. I can totally empathise with how you are feeling. I don’t know if you saw the post I wrote about turning 30 as it was back in 2016 (you can read it here). But, I share similar feelings in that post. That feeling was what ultimately led to me taking a leap of faith and having treatment at Infusio.

      • Ive got my medichecks test in the post today and I’m really impressed with it! So quick and efficient and I dont even have to leave my house! (Luckily my dad is my helper, he’ll go to the post office for me!) I felt exactly the same, my life is just drifting by me in the hope that one of the things I’m doing will help my energy levels, I’m currently doing the perrin technique with a practitioner every week, which is expensive and I’m not sure how much it’s helping! Hopefully I’ll get more answers with this test! Thank you I’ll have a look at the book too 🙂 Erin

  3. Thank you so much for your blog, it really helps, more than you can imagine, gives me great hope as i plan to go. Youve written it really well. Lots of love. Sarah xx

    • Hi, Sarah. Thank you for saying this, it really means a lot to me. That’s wonderful that you are planning to go to Infusio. Please do let me know how you get on when you do go. It’s a fantastic place and– though it’s still early days and I have lots of healing ahead– I can honestly say it’s been life-changing for me 🙂 x

Write A Comment