I feel like a reporter on the front line of long covid, only the ‘front line’ is in my body

Five major insights that I learnt this week…

I’m here to translate the madness of my recovery into language that’s understandable for anyone who’s not a scientist or specialist, which is pretty much all of us…

I’m at the point where I can no longer scour medical journals in the daunting attempt of trying to decipher medical science speak.

It’s overwhelming.

I’ve been desperate to understand what’s happening to me in layman’s terms & why.

My specialists are learning in real time through myself and others in the clinic.

I owe my LIFE to Dr Man, Dr Lyon and Dr Price at The Royal Brompton Hospital.

FINALLY, the pieces are starting to be put together as to why this happened…

In a nutshell, covid messed up my body hard. It left a wrath of destruction which created more destruction. My specialists are trying to treat the latter destruction but there’s no real way of finding out covid’s ‘wrath’ because the test doesn’t exist in the UK.

I was stunned to learn this from my specialist.

What I’ve been acutely reminded of this week is just how shockingly behind the UK is in biomed research compared to America.

If anyone comes across endothelial function private testing in the UK please let me know!

I find it helpful to read the brilliant blog ‘Rosecottagedoc’, written by a doctor with long covid, which condenses information that’s easier to digest.

This website sums up the causes of long covid in the most succinct and easiest way to understand. Ironically, I saw my diagnosis blog listed in the references above Dr Bruce Patterson which was crazy! It echoes what my specialists have told me too, which is why I find it a credible resource.

We’re all learning from each other across the world.

So what are the five major insights that I’ve learnt?

IMPORTANT: although colchicine is working really well for me, it may not for others.

Dr Lyon mentioned that it’s working well in long haulers, specifically from the first wave (March/April 2020).

Could certain anti-inflammatories work for inflammation caused by certain variants? Hmm!

I hope this post helps you to understand more about long covid, plus find answers of your own!

You can show this post to your doctor to help you in your own advocacy and to share this knowledge with them.

✔️To summarise, there’s three bits of good news *crowd cheers*:

1️⃣ T Cell Flow Cytometry private test available
2️⃣ Dr Patterson’s Cytokine test is available in mid-September.
3️⃣ Colchicine has made the biggest improvement in my sixteen month recovery.

Follow me on instagram for regular updates about my recovery.

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