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Wednesday 29th November 2017

I am now 4 weeks post stem cells. I had my stem cell procedure (SVF) on the 1st of November 2017 at Infusio, Frankfurt. The first three to four months of healing following stem cells can be a roller coaster. Both physically and emotionally.

It’s a process that is completely individual because what the stem cells are working on and what is healing will be different for each person. For me, I have seen some really positive changes and I’m happy with how I am progressing. But, it hasn’t been without its challenges.

Week 1

When I returned home from Frankfurt, I spent a lot of my time resting and sleeping. I did need to sleep more than normal. I went to bed really early in the evenings and I also had to nap during the day.

However, during that first week, I had a small window each day where I suddenly had more energy. It was almost like hyperactivity and I felt able to go out for short 5-10 minute walks.

I noticed that it felt good to be up and about. Prior to Infusio, I had problems with orthostatic intolerance. Standing or being upright for any length of time would leave me feeling ill. It was, therefore, strange to feel good when out walking— even if I was only capable of 5-10 minutes.

This is my 4 week post stem cell update. I had treatment at Infusio, Frankfurt.
A photo taken during week 1 that I shared on my Instagram.

I Need To Exercise When I Feel Able

Infusio has encouraged me to exercise when I feel able to. Stem cells like exercise and exercise also helps to boost the number of mitochondria (the energy powerhouse of cells). As CFS is my main issue, this is really important for me. This is because increasing the number of mitochondria will help to improve my body’s ability to produce energy.

This is something I struggled with previously. I had exercise intolerance and no matter how hard I tried, I wasn’t able to increase my exercise without making myself ill. This time, things feel different. Like I said, getting out walking is making me feel good– something completely alien to me!

In addition to walking, I have been doing 5 minutes of restorative yoga most mornings. I have been sleeping consistently well since returning home from Frankfurt. So much so, I hardly move in my sleep. My body is therefore stiff in the mornings when I wake up.

I find yoga really helps to loosen up my muscles and it’s a nice, positive start to the day. At the end of the session, I always set an intention for my day. Affirmations are really helpful for me.

It’s Important To Not Overdo It

Of course, it goes without saying that we are encouraged to do only what we feel capable of. There is no point in pushing too much as this puts stress on the body and risks a crash. Stress is not good for stem cells and rest is incredibly important for healing too. I need to strike a balance between the two.

Problems With Histamine

The main issue I experienced during the first-week post stem cells was histamine reactions. This actually started the day I got my stem cells. I’ve been itchy and coming out in rashes and hives. Infusio recommended that I follow a low histamine, anti-inflammatory diet to help with this.

Week 2

In week 2, I started waking up naturally in the mornings about an hour or so earlier than I was before I went to Infusio. In general, mornings have felt easier. I have had a few mornings where I have woken up with that ‘hungover’ feeling, though. However, this has subsided once I am up.

Energy Felt More Sustained

During my second-week post stem cells, I felt that my energy became more sustained. In a way, it felt lower because I was no longer experiencing that ‘hyperactive’ feeling. But, I began going to bed at a time that was more normal for me and I didn’t need to sleep as often during the day.

I also noticed that I wasn’t experiencing a dip in energy in the afternoons. In fact, some days I was going out for a walk after lunchtime (I’d go out for a walk whenever I felt most up to it— some days that was in the morning, others it was in the afternoon). This was amazing to me as I’d always experience a dip in energy in the afternoons prior to Infusio.

I actually feel like I’m maybe getting more out of my food as I feel energised after eating (eating used to be draining for me). And, I guess, this would be a big reason to explain why I’m  no longer experiencing energy dips in the afternoon.

I sLOWLY bUILT uP mY wALKING

I continued to be able to go out for walks most days in week 2 (if I didn’t feel up to it, I didn’t do it). I was able to do walks of 10-15 minutes and it was nice to feel like I had made progress. I tired out after walking but, again, it wasn’t the horrible flu-like fatigue I used to experience. It felt more like a normal kind of tiredness.

I also noticed that my heart rate was lower when out walking, which I checked using my Fitbit. Previously,  my orthostatic intolerance symptoms would kick in when walking; my heart would race and I’d feel the need to lie down. It’s really positive that this hasn’t been an issue for me following treatment at Infusio.

It was great to be out walking but rest was still important during week 2 and I continued to spend a lot of my day resting in bed or on the sofa.

Rest is important following stem cell therapy.
A photo taken during week 2 that I shared on my Instagram.

Histamine Issues Began To Subside

I continued to have histamine problems in the second week of being home. However, it wasn’t as bad as the first week and things did seem to be settling down. I definitely wasn’t as itchy but I did have some rashes/redness. It’s taken a bit of time to learn which foods I react to and which are okay.

Things are headed in the right direction though. Plus, it’s a part of healing and things will naturally settle down anyway.

I did have some other issues and I wasn’t sure if this was histamine-related or if I was perhaps coming down with a head cold. It was hard to tell. I had headaches most days (including a migraine one day), sinus pain and my head felt full and foggy.

I began drinking nettle tea in case it was histamine-related. This was recommended to me by one of my stem cell buddies as nettle is a natural antihistamine. It definitely helps and I continue to drink it most days (it’s really nice!).

A Little Adventure

I had one little adventure during the weekend of week 2. My husband Ross and I popped in to see my brother and his fiancée for a quick catch-up and then we went out for lunch. I was able to sit in the restaurant and did not feel bothered by the lights or noise.

I was a little tired afterwards but felt okay in myself. I was happy because doing something like this previously would have left me feeling completely wiped out and ill. So, this felt like a huge step forward.

Week 3

The week started out well. I managed to spend a couple of nights being social with friends and I also managed to do a couple of 20 minute walks at the beginning of the week, which was fantastic. Building up from 5 to 20 minutes is a big achievement for me.

Ross and I also went on another little adventure. This time we drove to a beautiful little coastal village where we stopped at a cafe and then went for a walk. It was so nice to be out for a couple of hours and not feel tired out after. It felt like I was taking the first steps towards a more ‘normal’ life.

hEADACHES

I continued to experience headaches during week 3. However, I began to understand and realise what the triggers were. Light is definitely a big one. Spending too long concentrating (writing a blog post for example) is another. So I am learning to avoid those triggers and minimise the headaches.

Things Got A Little Challenging

Unfortunately, I started to feel unwell towards the end of week 3. I was initially worried that I had overdone it and was about to experience a flare-up. To my relief, I actually got sick with a head cold. So perhaps the symptoms I had experienced earlier in the week were due to the cold after all (rather than being histamine related).

It sucked to be sick. It’s always rubbish to go from doing well to being in bed ill.

Week 4

Learn how I have been getting on 4 weeks after stem cell treatment for Lyme Disease.
A photo taken during week 4 that I shared on my Instagram.

Thankfully, I surprisingly got over my cold in a few days, which was amazing. Usually, I’d never have typical cold symptoms  ( I’d never be able to tell if it was a cold or a flare-up) and I’d be wiped out for at least a couple of weeks.

Unfortunately for me, I just got over my cold and then a few days later came down with something else. This time, it’s more in my chest; I have a sore throat and chesty cough.

I’m not sure if this is the same infection or if I’ve picked up something different. Perhaps, it’s even my immune system kicking into gear and throwing up viruses that have been dormant in my system. Who knows? Fingers crossed I get over it soon.

A Note On A Few Other Symptoms

So, that’s been a summary of my first four weeks post stem cells. Here are a few other things I want to note:

PAIN

My pain has generally been low. I have had some days where I’ve experienced all over muscle pain (I think this has mostly been related to the viruses, though). I’ve also had some lower back pain and one day my left hip and knee were painful. But, the pain was bearable and subsided.

Neurological symptoms

I have had some muscle twitching, electric shock type feelings and some tingling latterly. I like to think this is due to neurological repair starting to happen.

Mood

My mood has been a bit up and down. For the most part, I’ve been feeling upbeat and positive. And, I’ve even experienced some really strong feelings of joy. It’s made me wonder if I’ve gone years without feeling emotions properly because they feel so intense. Either that or my hormones may be a bit all over the place at the moment (due to healing processes) and I’m feeling emotions more strongly as a result.

However, I have had days where I’ve felt grumpy and irritable (sorry Ross and Mum!). And a couple where I’ve felt a bit low. Some days I’ve also been apathetic. I reckon these are tied into how I physically feel though.

Skin

I did break out in spots across my forehead following stem cells. This took a little bit of time to go away (thankfully it wasn’t very obvious as there wasn’t much redness). However, overall, my skin has been brighter and I am looking a lot healthier. It’s not just me who thinks this, my family have been commenting on this too.


Final Thoughts…

I hope you have enjoyed reading my update and following my progress. It feels quite daunting to share this with you as it is happening (often I blog about things after the fact so that I have had time to process it myself). However, it feels right to share this as I know there are people following me who are interested in this treatment.

Having said that, please remember that I am healing. My focus right now needs to be on me and my self-care. This means that I am not in a place to answer questions you have about this treatment. These are better sent to Infusio directly either via email or via one of their Facebook groups (Infusio Exchange and Ask Infusio).

I don’t have more to say than what I am sharing in my posts. So, be sure to check them all out here. You can also follow me on Instagram for updates.

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I had stem cell treatment (SVF) for Lyme Disease at Infusio, Frankfurt. Click to read my 4 week post stem cells update. #lymedisease #stemcells #stemcelltherapy

11 Comments

  1. I’m glad the treatment seems to be working for you. Out of curiosity, is a histamine reaction the same as an allergic reaction?

    I’ve considered using stem cells for an injury. That said, it seems to be so expensive, I’m not sure I can afford it.

    I really hope that you’re right and that your immune system is kicking into gear.

    That’s really interesting that stem cell helps (along with exercise) boost mitochondria.

    Thank you for this post!

    • Hey Crys,

      Thank you. I’m not entirely sure but I believe it is different from a true allergy. I’ll try and explain what Infusio told me but I apologise if I don’t get this completely right as I found it quite complicated to understand. Mast cells are closely linked with nervous system. As stem cells trigger and help with neurological repair, mast cells are activated. I believe mast cells release histamine as part of this process. It will, therefore, settle down with time but for now I’ve been recommended to follow a low histamine diet and this seems to be helping. Hope this makes sense!

  2. What an observant update! I am glad to hear that generally it’s been going well. Looking forward to seeing how this works in your health for a longer term! ????

    • Thank you Sheryl 🙂 I’ve been journaling my progress, which makes it easier when it comes to sharing on my blog. Fingers crossed I get over this cold and back on track soon.

      • Sorry not sure where the question marks came from…was typing on my phone lol. Yes! I do check out your Instagram for the updates too 🙂 Take good care! xx

  3. Thank you for sharing your stem cell and healing journey with us. You have such a lovely and organized way of writing. I love this, and love your blog. My writing style is a blathering mess – ha!

    Please do take the necessary time for self-care and allow your stems to do their healing work. Hoping you are able to continue your walks and gentle restorative yoga, as your body allows. Blessings and healing hugs to you Donna. ????????????

    • Thank you, Terry. I have the advantage of having a written journal 🙂 I’ve been writing each day and then writing a weekly summary. So, it makes writing posts like this much easier. Aw, don’t say that. I love your blog 🙂

  4. Across the pond here, I found your stem cell story intriguing and inspiring, and I am hoping to hear more of your positive recovery. Wishing you well!

  5. I have been looking into the best treatment. I too am housebound and my worst symptoms are neurological, and function and cognitive. I thought about stem cell treatment but was put off when a friend of a friend developed pots from it and also some other people having not had some good experience with it so I feel kinda torn at what approach to now take. I really hope it works for you and will follow your journey.

    • Hi Sarah, I hope that you find my posts about Infusio helpful. Do you know what kind of stem cell treatments your friends had? There are a few different types that clinics offer. Infusio uses SVF, which I chose due to the level of safety. Infusio also does 2 weeks of pre-treatments to prepare your body for SVF, which I believe increases the chances of it being successful. Like anything, though, it doesn’t have a 100% success rate but they do have good success with Lyme patients. It’s all about what is right for you. I’ve actually found my orthostatic intolerance has greatly improved following SVF but everyone is different. Neurological repair can take 6-9 months to begin healing so that is something to keep in mind as you research this treatment. It involves a lot of waiting and patience, which is really difficult at times.

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