Unity Physiotherapy & Wellbeing

🌿 Post-Treatment Lyme Syndrome and The Role of Dysautonomia

I attended the Dysautonomia International Conference in July online, as I have a few times before.

I attended a little live & am slowly catching up on recordings.

Yesterday I listened to a talk on post-treatment lyme and dysautonomia with John Aucott.

This was really interesting, partly as I developed post-treatment Lyme disease after early Lyme disease had been ineffectively treated. I had a 6 month gap between antibiotic courses, which I later learnt was against the NICE guidelines, and during this time more symptoms developed & severity increased. I suspect it has been one of the contributors to developing ME/CFS, PoTS and MCAS (though I’ve likely had the latter for much longer).

There is still some non-acceptance & misunderstanding around Lyme disease. One important point from the talk was that antibody testing can be negative in the early stages because it takes time for the immune system to produce detectable antibodies. This is something I experienced with having had a classic rash and subsequent confirmation of Lyme by infectious diseases, yet some other medical professionals have still questioned this!

There were a number of interesting things in the talk including:
* The different stages of Lyme infection — from the early skin infection, to possible cardiac & neurological involvement, and later inflammatory arthritis if left untreated
* The rash doesn’t necessarily look like the classic ‘bullseye’ or target lesion & can vary in appearance; and can look different in females
* It is suggested that around 10-20% people treated for Lyme develop persistent symptoms, although the true figure may be higher
* There are significant overlaps with Long Covid & other infection-associated illnesses, particularly fatigue, brain fog & pain
* Fatigue is the most common & severe symptom
* There are several proposed biological mechanisms, including immune dysregulation, inflammation, changes within the nervous system & potentially autoimmunity
* Research has identified neuroinflammation on PET imaging
* Studies have found dysautonomia in people with post-treatment Lyme disease, with symptoms across a variety of autonomic domains
* Research also has shown an association with small fibre neuropathy
* An interesting study compared people with post-treatment Lyme & people with non-lyme PoTS. The overall pattern & severity of dysautonomia was similar, although some areas, including orthostatic intolerance, were more pronounced in the PoTS group

There was recognition that post treatment Lyme disease isn’t necessarily one single presentation. Different people can have different combinations of symptoms & underlying mechanisms. I think this is true of many chronic illnesses.

It was great to hear there are further studies underway and that at the Hopkins Centre they run an MDT clinic for people with post treatment Lyme.

Do you live with Long Covid or ME/CFS?

Are you not currently accessing an NHS specialist service and haven’t done so within the last 3 years?

You could take part in HERITAGE - a £1.4 million, UK-wide NIHR-funded study looking at how care and NHS services for Long Covid and ME/CFS can be improved.

The study aims to recruit 3,000 people to better understand:

• Experiences of accessing care
• Unmet healthcare needs
• The overlap between Long Covid and ME/CFS
• Different models of specialist care

The findings will help inform future NHS services and the development of a National Service Framework for Long Covid and ME/CFS.

If you’re eligible, consider taking part and helping shape the future of care.

🔗 Find out more: https://heritage.leeds.ac.uk/join/

🌿 Thoughts & Beliefs Aren’t Necessarily True

How often do you let your thoughts and beliefs get in the way of giving something a go?

“I can’t do that.”
“That’s not me.”
“I’m not good at…”

When we take these thoughts and beliefs as facts without questioning them, they can become limits. They can stop us making changes, trying something new, enjoying activities, playing freely or discovering that we’re capable of more than we thought.

Yesterday I was drawing with my youngest niece on an Etch A Sketch-type toy. She asked me to draw a monkey. I noticed the thought, “I can’t draw a monkey” and remembered that the last time I tried this, it looked like a bear. I noticed my reaction and was about to say I couldn’t do it and ask her to choose something else.

But I didn’t.

I said, “I don’t know if I can do that”, googled a cartoon monkey and gave it a go.

And I’m actually pretty impressed with my monkey. Everyone knew what it was! Her reaction was wonderful. In an excited and happy tone, she said,
“Wow, my monkey!”

My belief that I couldn’t draw a monkey turned out not to be true.

It’s often not possible to think our way out of beliefs. Cognitive reframing can help, yet it doesn’t always stick — we often need different experiences too.

When living with chronic illness, thoughts and beliefs can influence how we approach symptoms, pacing, activity, change and recovery.

Sometimes they can support us; sometimes they can become limiting.

They also influence workplace environments, including beliefs about what is possible and sticking to how things have always been done. They can be barriers to compassionate trauma-informed working too.

✨ Awareness gives us choices.

We don’t have to believe every thought that arises. We can notice it, be curious about it, and perhaps ask:
* Is this actually true?
* Is it true right now?

Sometimes we discover that the thought was protecting us. Sometimes it contains useful information. And sometimes through exploration we discover that what we believed wasn’t true after all.

What might be possible if we didn’t believe all of our thoughts and beliefs?

✨ Being curious about them can create more possibilities.

🌿 Pacing, Choice and What Matters

Yesterday I planted a rose, which involved moving another plant & digging a big hole.

I’m grateful that I can do this now. I couldn’t garden at all for much of 2022, and when I was eventually able to, it was initially just 5 minutes of light gardening.

It was only last year, or perhaps the latter part of 2024, that I became able to dig a deep hole for a plant without experiencing post-exertional malaise afterwards.

I still need to be mindful when I do something like this & consider what else is in my day.

Yesterday was quite demanding as the ground was very stony & there was a very thick old root in the way which was too large to dig out, so I had to saw through it.

I stopped after planting the rose, even though I had another plant waiting to go in. It can be frustrating to stop when something feels like it might still be manageable in that moment.

Part of me wanted to carry on, but I knew it wasn’t wise. The garden is a great teacher — slow & steady.

There was a little reaction to doing this, but no PEM. My awareness, heart rate & HRV variability this morning all suggested that things had settled.

That meant that today I could spend time with two of my nieces & nephew, and I also had enough capacity to plant the other plant this afternoon, as this morning was within my tolerance.

It was lovely to spend a little time gardening yesterday and today, especially after the rain. I love gardening when the air and earth feel fresh.

I don’t see pacing as having a fixed amount that I can or can’t do. Instead, it’s about understanding approximate baselines, noticing what my body is communicating, considering what matters to me, and making choices that allow me to do meaningful things within my capacity.

Sometimes that means stopping before I’d like to. Compassionate awareness and my wise compassionate self help me step back rather than push through.

Doing less sometimes can mean I have more capacity for something that matters tomorrow.

💚 Who else enjoys gardening after or during the rain?

💭 How do you see pacing, and how does it support you?

A wonderful friend and colleague Maggie Murray challenged herself to raise funds for Macmillan Cancer Support by walking 100 miles in August. I’ve enjoyed following and supporting her journey. If you can make a little donation there’s a link for that in the post below.