It was pointed out to me yesterday that my last update here was in 2016 – that was my 5 year and 5 month update – so, as we are now able to post here again, it seems like time for another update. This site tells me I have been a member here for 11 years and 3 months, so that must make this my 11 year and 2 month update.
To recap slightly – ill since 1989, though, with hindsight, I was probably never completely well a long time before that. Misdiagnosed with ME/CFS, then, as a result of neurological symptoms, with probable MS – though lucky, in a way, to have a Consultant who never likes to label things. Found out about Cpn and CAP through the friend of a friend, and, on the basis that I really had nothing to lose at that point, started combined abx back in 2011. I will always be thankful to Sarah and David for making that possible.
I always had difficulty tolerating the abx and had to go slowly, due to die-off/herx/toxins. Always struggled with pulses and mostly only managed a day or two of those. But glimmers of hope did eventually start to shine through, so I kept at it. As with the tortoise and the hare, I always believed slowly can get there in the end.
After my last update, I continued with the abx and did eventually manage pulses of 3 days. By October 2017 I was enjoying being able to live life without the huge struggles I had known for so many years and, whilst I was still responding to the abx and didn’t feel I was finished with treatment, I decided to take a break. I wanted to see where I was without taking the abx and just wanted freedom from relentlessly keeping up with it all for a while. I did continue with all supplements though. I then spent a few years just making the most of living life a little and feeling more OK than I could ever remember feeling.
Before I stopped abx, I did try to introduce rifampicin into the protocol, but I did not have any luck with that one. After 6 weeks at half dose it was causing kidney problems, so I had to stop.
Just over 4 years ago I moved from oral B12 supplements to injections. I had always had a problem with high serum B12 along with symptoms of B12 deficiency (mainly neuropathy), suggesting a problem metabolising B12. I’ve continued with the B12 injections every other day, in accordance with the UK NICE guideline for those with neurological symptoms. I do feel this is continuing to help.
By the end of 2019 there were a few signs that things were starting to go in the wrong direction again – I started to notice a gradual return of the left side weakness and various other symptoms, including problems with joints. I was still functioning well at that point though and walking was still unaffected.
I started abx again early 2020. Then the world fell apart with the global pandemic of Covid-19. For various reasons, including the logistics of things, I found it impossible to continue with the abx. There was no choice at the time but to stop. I was still well enough at that point for go out for a good long walk every day, so I was coping well with it all.
Early in 2021 I suddenly went from being able to go for my walk, to not being able to manage it. The tipping point seemed to have been reached with that weakness in the left side. Other than the walking, I was still fairly OK and I started abx again some time that summer.
In September 2021 something completely unrelated to any of this triggered a Guillain-Barré-like illness, causing loss of sensation and weakness in arms and legs and a whole load more neurological symptoms besides. A difficult 11 months of being very debilitated and not knowing whether I would be able to find a way through all of this and survive it.
I’ve continued with CAP during that time, just recently starting to add tinidazole pulses to minocycline and roxithromycin. I didn’t want Cpn to take advantage whilst I was distracted by other things. So far, so good, and, as ever, I’m staying hopeful about all of this…