If you are new to my blog, my name is Donna and I have lived with Lyme Disease, Fibromyalgia and CFS for a number of years. I had stem cells for Lyme Disease at Infusio, Frankfurt in 2017 and have been documenting my progress on this blog. Find all of my posts about Infusio here.
I have to say I’m glad to see the back of May! Which is a shame because it was such a nice month here in Scotland. We have had some lovely weather and it’s just unfortunate that I spent a lot of the month feeling unwell.
If you read my 6-month update, you will have seen that I was dealing with a nasty virus last month. My viral symptoms seemed to subside by the middle of the month but I was left with awful fatigue. Some days all I wanted to do was sleep.
Healing is Challenging Mentally
At this point, I was also struggling mentally (which I think comes across in my last update!). I felt low and was experiencing a lot of anxiety about my health. I had to make a conscious effort to do things each day to help with my mental health.
Being ill with a virus was causing much of the mental stress I was experiencing but I also believe that neurological healing was playing a role too.
Neurological Healing Flared Up Some Symptoms
Neurological healing is a healing phase that happens a few months after stromal vascular fraction (SVF) treatment, which is the type of stem cell treatment I had. This is when nerve repair happens in the body and it’s a process that can take a few months.
During this time, patients can experience a whole range of symptoms flaring up. For me, the symptoms of neurological healing have included:
- Mood swings
- Pins & needles
- Muscle twitching
- Feeling off-balance
- Brain fog
- Localised pain
- Headaches (and even a couple of migraines)
- Increase in histamine issues (histamine is produced as part of the process of nerve repair).
Neurological Healing Is A Challenging Time
Needless to say, it is not fun! It’s challenging mentally and physically. I believe many people can struggle at this point as it can be quite scary. Especially since many of the symptoms are similar to how it feels to be sick with Lyme Disease.
It’s important to remind yourself that you are healing and that it’s all part of the process. The symptoms of neurological healing are not because your disease is coming back. Quite the opposite.
The really unfortunate part for me is that I’ve not only had neurological healing to deal with, I’ve also had that nasty virus on top of it! Talk about being miserable. My poor body was hit with a double whammy.
My Viral Symptoms Re-appeared
Although I thought I was past the virus by mid-May, my viral symptoms re-appeared at the end of the month. My immune system was clearly in a tug-of-war battle with this virus all month.
In a way, I was relieved about this because it explained why I had been struggling so much. But, it also sucked that I was having to deal with something my body really could have done without. That’s life though!
I contacted Infusio for help with my neurological healing symptoms and I got some really helpful advice from Nadine. It’s always great to know that help and reassurance is only an email away.
Thankfully, I seem to have turned a corner and I’ve been getting some relief.
Always Reach Out For Help If You Can
My advice to anyone who is struggling in the months after treatment at Infusio is to reach out and let them know. Don’t suffer in silence because there might be something else you can do or take that will help.
How I am Doing at 7 Months Post Stem Cells for Lyme Disease
My virus seems to finally have left *madly touches wood* and my neuro symptoms are settling down for now. I still don’t feel as well as I could but my energy is returning slowly and my mind is much clearer. I’ve been able to get out for walks and spend more time out of bed.
I’ve also spent a little bit of time sitting out in my garden enjoying the nice weather. Which has been especially nice considering I haven’t had to worry about light or heat sensitivities. That in itself is a big improvement.
The only annoying thing for me is that, because I spent most of last month doing very little, I seem to have lost the fitness I managed to build up prior to May. That said, I don’t think it’ll take me too long to build it back up again. I just need to make sure I go slowly and don’t overdo it.
One observation I have made is that the more I can exercise and build myself up, the less I have problems with lower back pain (which I’ve had trouble with on and off ever since I pulled my back as a teenager). I believe building up muscle and strengthening my back is key to managing this pain for me.
Right Now, My Fibromyalgia Pain is Gone
Speaking of pain, a huge positive right now is that my Fibromyalgia pain is gone. In fact, at this moment in time, I don’t feel like I would fit the diagnostic criteria for Fibromyalgia at all. Which is nothing short of amazing.
That said, I still use my Oska Pulse a couple of times a week as I feel it’s important to keep up with all the things that have helped me to reach this point (plus, it also helps with my lower back pain and with muscle recovery after exercise).
I know that aches and pains may still crop up as part of healing moving forward. However, I do feel like I’m at a point where I can safely say that I am moving on from the years of suffering with Fibromyalgia.
Addressing Gut Issues
The main issue that is still giving me bother (aside from all the healing stuff) is my GI symptoms. I mentioned last month that I was having problems with stomach cramps, bloating and food sensitivities. Some of this can be related to neurological healing (which can cause some gut problems due to the increase in histamine).
However, I’ve long had gut issues and I decided that I need to be more proactive about it. I, therefore, purchased the Vital Plan Gut Revival Kit*.
This is a program designed by Dr Bill Rawls to help support gut health. It includes supplements, a diet plan, an e-mail series and support from the Vital Plan team. I will be writing all about it soon.
What I Expect Over the Coming Months
Over the next few months, I may continue to experience dips here and there. Neurological healing is a lengthy process and the symptoms of it tend to wax and wane.
I’m okay with that though as I can appreciate that healing is happening at a deep level. It will all be worth it in the end!
My mum made a very good point to me this week too. With each dip I take, I always seem to come out the other side stronger for it. And, that’s something I need to remember when the difficult times hit.
READ MORE: Find all of my blog posts about my treatment at Infusio here.
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* I participated in a campaign on RawlsMD.com called #MeAgain. As a thank you, I received a voucher for VitalPlan.com, which I put towards my first month of the Gut Revival Kit.