If you are new to my blog, my name is Donna and I have lived with Fibromyalgia, CFS and Lyme Disease for a number of years. In October/November of 2017, I received stem cell treatment at Infusio in Frankfurt. I’ve been documenting my treatment and progress on this blog.
Find all of my Infusio posts here.
I have written an update post but, I thought it would also be interesting to answer your questions.
On my social media, I asked if you had any questions about my stem cell treatment, recovery afterwards or how I am doing now.
Now, it goes without saying that I am simply a patient. I have no medical experience so what I share here are my views and opinions that are based on my personal experience.
I always encourage people to do their own research because everyone will respond differently to treatment. Stem cell treatment won’t be right for everyone and any medical questions are best directed to the Infusio doctors.
With that disclaimer out of the way, thank you to everyone who responded. Below are the questions I received and my answers, which I hope you find helpful.
Stem Cell Therapy Q&A
Q: Did you feel better while in treatment?
The short answer is I definitely wasn’t someone who went and immediately felt better. I had ups and downs through my initial treatment at Infusio (and those continued after too).
Some days, the IVs would make me feel really good. But, other days I’d feel really nauseous and ill.
The one that sticks in my mind is ozone.
On the day of my ten-pass ozone treatment, I felt amazing afterwards. The next day, however, was a different story and I feel so, so unwell!
It was all a normal response, though, and we were prepared for how we may react to treatment. Everything was explained well to me by the Infusio staff.
Mind you, I was sometimes a bit back-to-front!
I remember Dr Bijan explaining the detox IVs can be hard going and make you feel really unwell. But, my body loved them.
And, I’d sometimes feel crap after the IVs that were meant to make me feel good!
Q: How many bags of stem cells did you get?
I had Stromal Vascular Fraction (SVF), which is fat stem cells. My fat was taken, processed and I then received one IV bag with my stem cells.
At my follow-up appointment, I received a therapy developed by Infusio called ACT. This isn’t technically a stem cell treatment (it contains mainly immune cells I believe) but it does contain blood stem cells.
Q: Were the first few months of healing scary?
At times it definitely was. I’ll be honest, it has taken a lot of trust in the doctors at Infusio to get me through this.
There have been points where I’ve experienced new symptoms, revisited old symptoms and at times I was genuinely worried that it hadn’t worked because I felt so terrible. Healing is not easy and being patient and riding things out isn’t either.
This is where having a strong support system is so helpful. Having people tell me I was healing and that everything was okay helped massively.
My family wouldn’t let me believe it might not be working. Not even for a second.
I think it would have been very easy to believe things had gone wrong at points (especially through the neurological healing phase). Healing challenges you both mentally and physically.
Q: How long did it take for you to feel a difference? Did you notice a big turn around or was it gradual? What month did you start seeing more improvement and know the cells were working?
I’ve put these questions together as they are all similar and it makes sense to answer them in one response.
I noticed an immediate difference after my stem cell procedure. I felt less inflamed, my pain went and I had some energy.
It didn’t stay that way of course. When I got home from Germany I slept and slept and slept!
Then I went through many ups and downs as I healed. But, I’d say I noticed little changes and positive glimmers of hope from the start.
Those little changes added up over time and it was a gradual change. I’d say I noticed the biggest difference at four months after my follow-up appointment and ACT treatment.
However, it really took until month 8 that I really thought to myself, “wow this has worked“. Though my health still wasn’t consistent, by that stage, I was beginning to do things I never thought would be possible!
Q: Did you get any new symptoms from Stem Cells?
My stem cell treatment for sure made my histamine intolerance worse. It wasn’t a new symptom for me but I definitely struggled with it for a long time after stem cells.
I had to go on a low-histamine diet for months and I continue to use supplements to help with this issue.
I also experienced acid reflux for the first time in my life about 8 weeks after stem cells. I have no idea what that was about as it just settled down again on its own accord.
One thing I didn’t chat about (because it was worrying for me and I didn’t want to scare anyone else either) was my eyesight changed. This was particularly evident after my ACT treatment.
I am short-sighted and wear glasses. I noticed that I couldn’t see right at all and felt that my glasses were not the right prescription anymore.
I went to my opticians and– to my shock– my eyesight had gotten much worse! By almost a whole unit in each eye.
Immediately, I got in touch with Dr Bijan and he reassured me that it was because of the strong anti-inflammatory properties of the ACT. He said to give it a couple of months and it should resolve.
I trusted him and it turned out he was right. A few weeks later my eyesight changed again.
I returned to my optician and one of my eyes had returned to how it was before treatment. To my surprise, the other eye actually improved and I became less short-sighted in that eye and needed a weaker lens in my glasses.
Q: How is your tinnitus doing now?
To be honest, my tinnitus is something that hasn’t changed following treatment. It’s still the same from what I can tell.
I’m okay with that, though, because it’s mild and I only hear it when it’s quiet. It doesn’t affect my ability to hear and I’m so used to it doesn’t bother me.
It was also a symptom that wasn’t guaranteed to improve, I was only told it may.
Q: Are you still improving after 1 year?
I still feel like I am. I think the great thing about stem cells is that they trigger healing processes in your body and that can continue on for some time, I believe.
The human body is an incredible thing and has an innate ability to want to heal. That’s not always possible obviously but, in my case, my body been given the helping hand it needed for that to happen.
I’ll be interested to see how and if I continue to improve past the one year point. The good thing is that, because I am now able to exercise, I can keep working on building myself up and making my body stronger.
In my mind, that can only help me to become more resilient.
Q: Did you start getting more viruses after stem cells? When did you start getting “normal” colds?
I felt like I got more than my fair share of colds and viruses after stems. Or at least it felt that way!
A common thread throughout my stem cell treatment updates was getting sick with a virus. However, with hindsight, I’m not sure if all of those were true colds.
I do wonder if sometimes the symptoms I felt were due to immune activation occurring as part of healing processes.
If the biggest outcome of treatment is modulating and repairing the immune system, it makes sense that it would kick in to fight the infections already present in your body (that it couldn’t deal with before). This might feel like a new infection when really it’s just your body doing something it hasn’t been able to do before.
At least that’s my view, anyway! I don’t know if that’s medically correct, it’s just what makes sense to me.
I also think that I sometimes felt I was getting the cold when actually I was having issues with histamine. For me, the histamine issues were more than getting itchy or sneezy.
I would get muscle aches, headaches, sinus pain and nausea as symptoms too. It took me a while to figure this out.
Though I do feel I had a cold prior to this, I had my first proper, choked up and full on snotty cold at 11 months.
Before stem cells, I never really got the cold. I would think I did but I couldn’t really tell as it just felt like a flare-up of my usual crappy symptoms.
Q: What can be improved By the treatment?
I can only speak for my experience of stem cell treatment at Infusio (as not all stem cell treatments are the same). I think it’s important to start by saying that stem cell therapy does not treat Lyme Disease.
The concept of treatment is that the stem cells repair and modulate the immune system to enable it to deal with the infections itself. Mesenchymal stem cells can also differentiate into bone cells, cartilage cells, muscle cells and have the potential to repair nerve damage.
I can only speak for myself but below are the main improvements I’ve seen:
- Improved energy and reduction in fatigue: I am functioning at a much higher level than prior to stem cells
- Reduced light and sound sensitivity (doesn’t bother me anymore)
- I can socialise without issue and follow along with conversations
- I now have the ability to exercise, so I have improved muscle strength and stamina
- I do not get post-exertion malaise as I did prior to stem cells
- Quality of sleep has improved and rest is actually restful!
- Reduction in chronic pain
- Autonomic dysfunction symptoms have resolved– I struggled with even sitting up prior to stem cells
- My balance is much better
- Improved cognitive abilities and memory– I can concentrate for long periods of time
- I feel more like myself and my personality returned
- My immune system works!
- Reduction in inflammation in my body and I have lost weight
I look healthy: good skin, strong nails, shiny hair and no big dark circles under my eyes
I hope this post has been helpful and I’d love to hear your thoughts in the comments.
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