Read all of my Infusio posts here.

Wednesday 27th December

I am now 8 weeks post stem cells. I had my stem cell procedure (SVF) on the 1st of November at Infusio, Frankfurt. As I briefly mentioned in my week 4 update, things got a little challenging for me towards the end of the first month. And, challenging has definitely been the theme for month two.

Week 5

Week 5 was a difficult week. I caught a cold in week 3 and– though I initially thought I had overcome it– I was floored again with symptoms in week 4.  I continued to suffer from symptoms of the cold in week 5. My head felt full, foggy and sore; I had muscle aches and pains; my throat was swollen and sore; I had a chesty cough and I was exhausted.

My activity levels were, therefore, low in week 5. I spent one day completely bedbound and the rest were spent going between my bed and the sofa.

Despite feeling pretty terrible, my mood was mostly okay. I had a couple of days where I felt sorry for myself. But, other than that, I managed to stay positive.

I started to feel better… only to have to deal with something else

By the Saturday of week 5, I was beginning to improve. I felt able to do a little bit of blogging and was feeling much better in myself. Unfortunately for me, I woke up on the Sunday with a sickness bug. I was beginning to feel like the unluckiest person ever where winter bugs were concerned.

Sunday morning was horrible. I had intense stomach pain and felt incredibly nauseous. I couldn’t even face drinking water so I became dehydrated too. I didn’t actually vomit but I constantly felt like I needed to. It was awful.

Thankfully, I have been taking detox pills for my gut. I found they really helped to reduce my symptoms. I was able to drink and eat something a little later on in the day.

My symptoms of nausea and stomach pain continued for a couple of days, though they were much less severe than they were on the Sunday morning. I did, however, continue to have cold-like symptoms this week too. This was a bit frustrating as I felt like it was dragging on and I was never getting over it.

Fatigue was a problem

Fatigue continued a big problem for me. I was tiring out incredibly easily and finding even the smallest thing challenging. This was starting to get me down as it honestly felt like I had taken a huge step backwards.

What’s helpful, though, is that I have been getting weekly support calls from Infusio. It was reassuring to speak with Nadine. Her phone call came at a good time at the end of week 5. On that particular day, I felt really ill. I was completely exhausted, had a sore throat and had generalised muscle pain.

It helped to speak with Nadine as she reminded me that my symptoms could all be related to the viruses my body has been fighting. I joked that I was just getting all the winter bugs out of the way so I could be better for Christmas. She suggested that I start some support for my immune system and recommended that I take some vitamin C.

Week 6

Week 6 was hard. Week 6 was the first week where I really struggled mentally. My brain was my worst enemy this week and I had a lot of intrusive thoughts. It was strange because it honestly felt like I was revisiting old emotional stuff. It’s hard to put into words.

It was like I was reliving some of the emotions and feelings that I had worked through a long time ago. This time, I had the mental capacity to know that the thoughts in my head were not true. But, they still affected me emotionally.

I felt really isolated and lonely this week. Which is hard to understand since I am surrounded by the most amazing family. But, I am sure those of you out there who have chronic illness will totally get where I’m coming from. When you are spending the majority of your day in bed or on the sofa because you are so fatigued, it’s hard.

I did push myself to go out with Ross to pick our Christmas tree this week, though. I was in full sloth mode but it did help to cheer me up. It was nice to get out of the house, even if it was only for a short while.

Making it out of the house to go and get our Christmas tree. 8 week post stem cells update.

Trying to reintroduce foods

In week 6, I decided to try and reintroduce some foods back into my diet. You may recall that I had problems with histamine following my SVF procedure. To reduce this issue, I began following a low histamine diet in the first week following stem cells.

As it had been a few weeks, and histamine hadn’t been a problem, I thought I’d try and reintroduce foods. I decided to start with tomatoes. Unfortunately, it didn’t go so well and I came out in a rash and was itchy pretty soon after eating them. I guess I’ll benefit from continuing the low histamine diet!

I might try again with something else in a few weeks time.

Week 7

Thankfully, in week 7 I started to feel a positive shift; both physically and mentally. My cold symptoms were finally resolving, though I did continue to feel absolutely exhausted. I spent the majority of week 7 in my bed, completely resting. I did what I had struggled to do previously and I shut off and rested mentally too.

I think it’s what my body needed. Towards the end of the week, I felt like my fatigue had changed. I was exhausted still but it wasn’t the ill, horrible, Lyme-like fatigue. It was more like a “normal” exhaustion… for want of a better word.

Even though I still felt exhausted, this shift definitely helped me mentally. It’s hard to put into words but, underneath all the physical symptoms, I felt calm. I knew that the negatives would pass and that I was in the right place and doing the right things.

My pain was low this week

This week, as I overcame the winter bugs, my pain reduced. Overall, I had a low pain week. I feel like I’ll jinx myself by writing this but I had no fibromyalgia pain once my cold symptoms disappeared. That is huge.

I count my fibromyalgia pain as the widespread, generalised muscle pains. They weren’t there and it felt so weird but so wonderful. I had some lower back pain and that was it.

Digestion problems

In week 7 I did get a new symptom though; acid reflux. More specifically, acid reflux at night when I am sleeping. I’ve never had this before and I have absolutely no idea why it has begun. I think I have identified a couple of foods that may be potential triggers but, other than that, I’m clueless.

To help alleviate it, I have been making sure I sit upright after meals. I’ve also been ensuring that there are a few hours before dinner and bedtime. And, I’ve been propping myself up in bed with an extra pillow so that I am not lying flat when I sleep.

I’ll be chatting with Infusio about this following their Christmas break to see if they can help me too.

fINDING MORNINGS DIFFICULT

Although I feel like I have been sleeping well, I’ve been finding mornings difficult this week. I struggle to wake up and feel really drained until the afternoon. I don’t think the reflux will be helping but I think what also hasn’t helped is that I’ve been having really vivid dreams.

Some of these dreams have been good but others have been nightmares… which has been a bit strange as I don’t usually have these. I’ve been dreaming a lot and I’ve struggled to wake up naturally. My alarm has been startling me awake.

I have been aware that I am suddenly awoken out of these dreams. I, therefore, don’t think I’m properly finishing a sleep cycle. But, rather I am being woken up in the middle of one. That’s my theory anyway!

Week 8

In week 8, I started to use a light alarm clock. I used to use this years ago and I thought it might help. It starts to gradually light up the room half-an-hour before the alarm goes off. I found this to be really helpful. I began to wake up naturally before my alarm. And, I felt much better for it; mornings were much easier and I was less fatigued.

I was a little up and down this week, though. At the start of the week, I had some flu-like symptoms and muscle aches. However, I think this was payback from pushing myself to do too much. It was nothing like the payback I had pre-stem cells though and it improved after a few hours of rest. So, that’s something positive.

My mood was a little low at the beginning of the week (probably tying in with the increase in physical symptoms). Though, I always feel a bit low in the run-up to Christmas. I think it’s because it makes me reflect back on the year and realise it’s another year I’ve spent being ill.

However, I reminded myself that I’ve had an amazing treatment opportunity and that 2018 has the potential to be great.

In general, it’s been another low pain week. I’ve had some lower back and pelvic pain. But, again, my fibro pain hasn’t been an issue for me *madly touches wood*.

My Christmas tree

I had a good Christmas

I was, thankfully, feeling good on Christmas and had a great day. I had to lie down at points when I felt tired but I did manage to sit up for hours too and felt okay in myself. That, in itself, is a huge achievement for me. Comparing 2017 to last year, I have definitely seen improvements in my health.

Looking forward to month 3

I’m still having problems with acid reflux on-and-off. I’m hoping Infusio might have some suggestions for me when I chat with them next week. But, I feel like things are starting to pick up again for me.

Despite the fact the past 4 weeks have been challenging, there are positives to find too. The fact my pain has improved so much is really amazing and is probably the biggest positive to take away. Though I’m more than aware I’ll probably have many ups and downs to come, I’m hoping that month 3 will see even more positives.

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Stem cells for Lyme Disease. My 8 week treatment update. Click to read or pin to save for later. #lymedisease #stemcells #stemcelltherapy #lymediseasetreatment

Read all of my Infusio posts here.

4 Comments

  1. Thomas Meyer Reply

    Hi Donna

    Thank you for the update. Itös about the same journey for me the last weeks, but with minor flu like symptoms. The fibromyalgie things are better too, no more of these bad, deep muscle pain. Only some more normal muscle pain like aching after sports.

    The reflux sucks… I have this since 2 years and I have to take 40mg Pantoprazole because I had the problem that the acid went up the esophagus and got into the lungs. That was terrible… cough for 6-7 hours. and luck that I got no pneumonia … hope Infusio can help you with this! I think in my case the problem is the Sphincter of the esophagus that will not close proper due to muscle weekness (due to fibromyalgie)… but I‘m still not shure about it… To sit and sleep in higher position is very good! Especially after meals! You are so smart!

    My mood is also depending on how much energy I have and how much pain I have. We have to go through this…

    I have a question about the D-Rebose: Do you still take it? And does it replace completley the Q10? I never tried it, but I have to make an order for other supplements and I‘m thinking about to order some D-Rebose as well…

    So, keep on fighting and resting! A big lymlie hug from me. And give Ross a big hug too!

    Wish you both a good start into 2018!
    ????????✨✨✨

    • Hey Thomas!

      That’s really great that your fibromyalgia pain is better too. It’s reassuring to know that you’re going through similar and it’s all part of the process.

      Sorry that you have had reflux for so long. That sounds awful. It’s not something I’ve had to deal with before so I’m not too sure why it’s happening. Hopefully, Infusio will be able to shed some insight. I’m glad I’m doing the right things, I figured gravity would help 🙂

      I haven’t taken d-ribose in a while. I found it and the other mitochondrial supplements all helpful. The only thing I would say is, because it’s a sugar, if you have GI issues it perhaps isn’t the best to take as it can cause problems. It would be best to ask Infusio about it. The only mitochondrial supplement I’ve been taking is the Q10 too.

      Sending hugs right back and 2018 will be our year! 🙂

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