For some reason I cannot post an update to my Fundrazr Can you support my journey to physical recovery? So I emailed everyone who donated, and am going to post a version of what I emailed, as so many lovely people have reached to see how I am doing. (If you are stumbling across this blog and don’t know the ‘story’ (and want to!) have a look at The Art of Illness.)

I just had my first consultation with Dr. Ben Sinclair, which is what the fundraiser was for, two consultations with him. Oh I wish all Doctors were like Dr. Sinclair. Prior to the session I had completed several pages of questions regarding my health history and so on, which he had read through prior to the meeting (Google Meets). Dr. Sinclair was very thorough, and my take was he had an excellent, intelligent and multi-disciplinary approach, taking in all the complicated aspects of my story. As I also suspect, I most likely have both viral and bacterial issues, plus damaged autonomic nervous system / dysregulated immune system, from both trauma and pathogens (including EBV, HSV, mycoplasma pneumonia, tick-borne disease etc). He listened really well, was articulate and positive, and I felt had a clear understanding of the many issues I have/have had. He himself had Long Covid and had such poor treatment on the NHS, which is why he started his own private practice with a small team behind him including Dr Carsten Nicolaus who specialises in Lyme, tick-borne diseases and associated health conditions.

Dr. Sinclair came up with a plan for me:

First off I need to do some blood tests on immune function, vector borne diseases and so on. Some of these I might be able to have paid for on the NHS, others will have to be done privately. I won’t know for a week or so as I’ll be filling out further forms and discussing with my own NHS GP what she can get done. I am hoping I have enough from what was raised to at least cover the blood tests, but I’m not sure at this point.

Once the tests are done, I will go on a trial of a month of the antiviral drug, Valacyclovir (which I know my NHS GP will be willing to prescribe, thankfully). This is something I’ve been thinking of doing for a while. Dr. Sinclair talked about ‘clearing the decks’ so to speak, before bringing out the big guns (my words!) – as it will help him decide more specifically what to use – antibiotics or alternative approaches or both. 

Dr. Sinclair said a lot of very encouraging things, including how it’s possible my activated sciatic nerve issues could be connected not so much to the prolapsed disk but to all else that is going on. I do know there are people walking around with exactly my diagnosis (pinched nerve from prolapsed disk) who have NO pain, so…. It would be miraculous if this was one of the many things that eased with his treatment programme. And, he thinks my restless leg syndrome could also be an aspect of the whole situation. It would be so amazing if this also cleared up! And, it will take time. I think we are talking about at least 6 months or more of treatment.

My health has been bad lately, including a week of such profound physical weakness I could barely open my eyelids. This is very unusual for me, it might occur for about an hour in the evening but not for a full week. I was so despairing I thought if I had the funds I’d check myself into a respite care or something similar (mostly respite care is for carers, but as I am my own carer for the most part some respite would be lovely…). Thankfully the weakness eased.

Anyway, I am eager to get started on this journey!

I’m sure most of you aren’t interested in all these details but I did want to update once I had the first consultation. 

Again, thank you all so much for reading, and for your generosity.

Previous blogs of mine on my physical situation:
The Art of Illness
Finding Home
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible