A photograph of me with Dunnottar Castle in the background. Find out how I am doing at six months post stem cells for Lyme Disease, Fibromyalgia and CFS.
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Can you believe that it has been six months since I received my stem cells at Infusio? I thought now would be a good time to write an update on how I am doing. My last update was a few weeks after my ACT treatment that I had back in February.

My Crash Following ACT & WHat I DId to Overcome it

To recap, after doing well following ACT, I experienced a crash due to neurological healing (which is a process related to healing with the type of stem cells I received). It took a couple of weeks, but my symptoms did subside and my energy improved.

I was left with a few lingering symptoms, such as brain fog and a ‘hungover’ feeling. From past experience, I’m aware that certain IVs can help with this. I, therefore, decided to visit an IV drip spa for a nice, feel-good IV.

The doctor at the clinic was great and, after I gave him a brief overview of my health situation, he made up an IV that he felt would best help me. It was packed full of goodness and, thankfully, it was just what I needed!

My Symptoms

After my IV, I felt like I got back to where I was before my crash post-ACT. I’d actually go as far to say that my energy was the best it had been in years! Which was fantastic.

My pain was also very low and even non-existent at times. As were most of my other symptoms. The only thing that was a problem (and continues to give me some issues) was my gut. I experience GI symptoms such as bloating and occasional pain.

A big part of this is that my food sensitivities have become more apparent. It would be easy to say that they are worse than before but I don’t actually think that’s the case. My belief is that my body can now actually produce a reaction it couldn’t before.

Problems with Histamine

Previously, I would feel unwell with an increase in pain and fatigue if I ate foods that didn’t agree with me. Now, I get pain, bloating and my skin can also break out in a rash. Post stem-cells, I seem to have an issue with high histamine foods that I wasn’t aware of before.

Histamine is produced as a part of healing processes related to stem cells. And, I think my body simply isn’t very good at breaking it down. Therefore, if I add high histamine foods into the mix, I have problems.

However, I have started on supplements that Infusio has developed as part of their new home program. These are helping me and have reduced my histamine symptoms. Though I still continue to be careful of what I eat (and I’m not sure if I have identified all of my problem foods).

I do think my gut will continue to be a work in progress and that it will take some time to heal. My health issues actually started with digestive problems so, who knows, maybe they will be the last to go. I’m actually considering trying Vital Plan’s Gut Revival Kit to see if it helps (I relied a lot on  Vital Plan products previously and highly recommend them).

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How I was Doing at 5 Months Post-Stem Cells

This takes us up to around 5 and-a-half months post-stem cells. Overall, if you were to take how I was before stem cells and compare it to this point, it’s like night and day. I essentially reached a place where I felt like I was getting back to living a ‘normal’ life (for want of better words!).

A typical day looked like this. I’d get up, washed and dressed. Make my breakfast, unload/reload the dishwasher or do a little bit of housework, then go out for a walk with my dog. Sometimes I’d go for a second walk in the afternoon, other times I worked on my PC for 2-3 hours.

I Still Had to Plan Rest

I did still have to plan rest into my day but it was less frequent than before. I typically chilled out on the sofa for a while after my morning walk (though I could chat with my Mum while doing this). Then, I’d have a lie down in bed at around 4 o’clock until dinner time.

And, though I got tired by the evenings, it wasn’t an ill Lyme/CFS kind of tired. It was a ‘normal’ kind of tired. I can’t stress enough that there is a massive difference between being tired and the fatigue you feel with chronic illness.

Oh, and I have to mention that there have even been a few times where I have cooked dinner, which is something I was never able to do before stem cells. Previously, my energy was gone by that point in the day.

I Stopped Experiencing PEM

The most impressive thing for me was that I stopped experiencing post-exertion malaise (PEM). PEM had been a defining feature of my illness for years. It stopped me from doing the things I wanted to do and left me feeling awful whenever I did decide to push myself to do something.

To be able to get to the end of the day feeling tired, but go to sleep and wake up feeling okay the next day felt incredible.

I was managing to do things I never thought I would be able to do again. I had so much energy at times, I honestly felt like a Duracell bunny! I was filled with so much gratitude for my stem cells and the treatment I had.

I Was Managing to do More than I Thought Possible

One Sunday, I even managed to go out for a run! A run! Even as I write this I struggle to believe it. I had been powerwalking around the park (I’d gone back to walking as I normally would have prior to falling sick) and I decided to try and test the boundaries given how much energy I had.

I downloaded a couch to 5k plan and decided to do the first day of training (or as much as I could manage anyway). To my surprise, I managed 2x 30second runs and 4x 1 min runs. The best bit about it: I felt fine afterwards.

It might seem crazy to be doing this but I wanted to try and build up my body as much as possible. In my head, I figured the stronger my body was, the better I would be able to cope with any dips or flare-ups of symptoms.

I was feeling well and I was doing well. This was the first point where I honestly felt like I was leaving my illness behind me. I couldn’t have been happier.

Healing Is A ROller COaster

Unfortunately, as always seems to be the case for me, this didn’t last. Perhaps you could argue that I got carried away. However, the main reason why was that I caught a cold. It always sucks to be ill and usually I’d get frustrated at acute illness interrupting my recovery.

However, this time I actually didn’t mind too much. My immune system did a great job and it was nice to know it was working as it should be. I was over my cold in five days. Wow.

You might be wondering why I’m astounded by that. Well, at one point a simple cold would flare up my chronic illness symptoms (particularly fatigue) and it could take a month to get over. Even as my health improved, a cold would knock me down for a couple of weeks.

One Thing After Another

My husband and I dressed up for a family wedding.

I was thankful to be over my cold as I had a family wedding at the beginning of May that I was looking forward to attending. If I was forced to miss out, I would have been gutted.

I made it to the wedding but, as much as it was great to attend, I found myself struggling by the evening. I was feeling very fatigued and I was in a lot of pain. I did the usual grin and bear it that I’ve become so accustomed to (when maybe I should have been more sensible about it).

Although these symptoms would previously have been a given for me, it had been a long time since I had felt this way. I knew something was up but I wasn’t sure what.

Picking Up ANother Virus

The next day I was utterly exhausted. By the Monday, I realised there was more going on. I do think I maybe pushed myself too much but, on top of that, I’ve definitely picked up another virus. Just my luck.

Unfortunately, this one has had a bigger impact. It’s the first time since stem cells that I have felt a Lyme/CFS kind of fatigue. And, that has been a bit scary. My mind got lost in worry for a few days, which I think is only natural but it won’t have helped me.

I think the biggest fear for anyone recovering from chronic illness is the fear of falling backwards. But, fear does not heal and I need to try and move away from this mindset.

I’ve found myself wanting to withdraw, rest and do very little. This is probably for the best and is undoubtedly my body’s way of telling me I need to go slow.

This WIll Pass

Unsurprisingly, I’m feeling low at the moment and I’m trying to remember to be kind to myself. I am telling myself that this will pass. That it’s a virus causing my fatigue and that it will just take time and patience to improve.

The positive to take away is that– a week later– my viral symptoms are mostly gone. It’s the fatigue that remains.

I do wonder if I perhaps have some neuro healing stuff going on too alongside the virus. Just because I’ve had some symptoms like headaches, pins and needles and tingling. It’s hard to know, though.

For those that don’t know, neurological healing starts at around 5-7 months post stem cells and can continue on and off for a few months.

I am really hoping that things improve over the coming week. There are a couple of things I have planned and I would hate to have to cancel. I’m trying to take each day as it comes, though, and not stress myself by overthinking things.

I WIsh I DIdn’t Have To Deal WIth THis

It sucks to have ended this post negatively. I wish I could rewind the clock by a month but it is what it is. One thing I’ll always be is honest. It feels vulnerable but there’s no point in sharing my journey but omitting the difficult parts.

Recovery is not easy and there will always be ups and downs. It’s difficult as you navigate your way through it but I hope that I’ll be looking back in a couple of weeks from a better place.

Avoiding Illness

All I know for sure is that I’ll be doing my best to avoid people who are ill for the time being. Though my immune system is clearly working a heck of a lot better than it was before stem cells, I’m not at a point where my body can fight off viruses etc without producing symptoms and making me miserable.

Every ounce of energy seems to be going into fighting off this current virus and it’s left me feeling drained.

I think I’ll do best to avoid being in this situation. Not just for my physical health but also for my mental wellbeing too.

Read next: How I’m doing 7 months post stem cells for Lyme Disease

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Sharing how I am doing six months post stem cells. I chose to have stem cells to treat my Lyme Disease and it has also helped my Fibromyalgia and CFS symptoms.

4 Comments

  1. Thanks for your honesty. Your blog is really refreshing as you focus on getting better and not just on the difficulties we face being ill. Keep going you’re amazing:)

    • Thank you so much for the encouragement and support Anji. I really appreciate it 🙂

  2. Now that I’m looking more closely at it, it could be a suppression of stem cells that are involved in my illness too. I need to research it more, but what you say about histamine makes sense to me.. I’ve had this instinct that antihistamines were not good for me. And they are definitely not recommended for the elderly (can bring on attacks of worsening dementia because they’re anticholinergic). There’s a mechanism there we don’t fully understand.

    I’m guessing but maybe it’s due to a low choline level? I had to do a lot of work to recover my liver after years of too many prescriptions… none of which helped very much. One thing I learned is that choline really should be a vitamin, but somehow keeps getting missed.

    There are some places in the USA that use stem cells, but the seem to be limited to spine and joint purposes. It’s interesting what you said also about 5-7 months later, the neuro healing occurs. I’m struggling right now, and it’s about 6 months after I started a gluten free eating plan.

    Congratulations on your improvement!

    • Research this but I’m sure the body’s ability to mobilise stem cells becomes impaired when chronically ill. I say this as I’ve seen Phil from Infusio mention that one of the first things that happens after SVF treatment is that it repairs your body’s ability to mobilise stem cells.

      It’s interesting you mention choline too. I had choline IVs when I was going through treatment at Infusio.

      I’m sorry you are struggling at the moment and I hope things improve for you. Infusio have a clinic in Beverly Hills so in case that was something you were interested in. But yes, there are many stem cell clinics around and it does pay to do research before choosing a clinic 🙂

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