This may be a long read – so probably best to settle down with a nice cup of herbal tea first!
I think it must be true that time really does fly when you’re having fun, as I really can’t believe I’ve been taking antibiotics for 5 years and 5 months now. Not exactly sure I can describe the whole adventure as ‘fun’, but it certainly continues to be both fascinating and bewildering.
I had a really positive appointment with my neurologist yesterday – he’s been supportive all along and, whilst I’m quite happy to ‘go it alone’ with all of this, which I have to do most of the time, it’s still great to have the chance to impress a doctor with the improvements so far!
So – those improvements I mention - in my good moments, I am about 90% improved. On bad days, I am about 30% improved. About equal number of good days and bad days, with the rest somewhere in between. I’d say that 5½ years of treatment have put me back to where I was about 10 years ago. I’ve been ill for over 27 years though – with hindsight, probably a lot longer than that – so there’s still a way to go, but I’m happy to be heading in the right direction. I appreciate every moment of feeling OK, just in case – nothing is taken for granted, as the line between OK and not seems to be such a fine and fragile one.
I’m still finding that the more recent symptoms are being addressed first, and gradually working back to longer standing symptoms. I still have a really difficult time tolerating the abx and the die-off/ toxins/inflammation, but I love the good moments so much that I want more, so I’m determined to stick with it. I still struggle a fair bit day to day, and the improvements are really most obvious if looking year on year.
I moved from doxycycline to minocycline nearly a year ago. After so many years of doxy, I’d assumed it wouldn’t be a difficult swap. I never learn! I found the minocycline hit very hard, especially with brain symptoms and head pressure. I had to divide my 100mg capsules into 50mg and gradually build up to full dose over many weeks. I love sunshine, so it was great to be able to enjoy every moment of the summer sunshine, without instantly turning bright red, this year.
I still take roxithromycin – I’ve pondered on trying azithromycin, but not got around to that yet.
I found it impossible at first to tolerate tinidazole and it took a very long time before I could manage even one metronidazole tablet. Too many detox/methylation issues – toxins built up quickly and made me very ill. Years of methylation supplements (in accordance with my genetic testing) never helped enough for me to tolerate it. The thing which finally made enough difference for me to continue with treatment is Liposomal Glutathione. It’s like magic juice – but very expensive. I can’t say how many pulses I’ve done, because I’ve never managed more than 1 or 2 days at a time, and it seems a bit unfair to count those as whole pulses, but I know that I’ve taken a total of 200 metronidazole tablets. Those who know how much I struggled with it at first will understand how pleased I am with this!
I moved from metronidazole to tinidazole about 3 months ago. Again, it hit hard – especially with brain symptoms and head pressure. Sometimes I manage 1 day – and sometimes 2 days. It tends to be either 1 day a week or 2 days everyone 2 weeks. I know I’m still a long way from 5 day pulses, but I just do the best I can.
I’ve also taken several long courses of amoxicillin (100omg x3) – along with bucket loads of supplements.
I’m a bit crazy keen on detoxing – as it really does make a difference for me and helps with those herx symptoms. I wish I’d known more about detoxing early on – I don’t think I’d ever imagined I’d need to work so hard at it, but it really has made the difference between being able to stick with CAP and not. Along with the liposomal glutathione, my strategies include Nutramedix burbur and pinella, chlorella, diatomaceous earth, lemon water, Alka Selzer Gold (has to be the US version), Epsom Salt baths, dry body brushing, oil pulling and l’ornithine (this helps remove ammonia from the brain). I also go to reflexology, which I love.
The only thing I stick with 100% is gluten-free. I never cheat on that. I do aim to for low-ish carb and low-ish sugar, but with variable success. I have as much organic as possible and love bone broth, kefir and sauerkraut.
In terms of general functioning, many of the tasks I could manage are gradually becoming easier – no longer a huge effort. And I can now do more tasks too. Dressing is less effort. The joy of being able to lift my legs up to put my knickers on! I no longer have to rest before drying myself after a shower. I can put away food shopping when getting home instead of having to rest for hours first. And I’ve been able to do more tasks around house and garden – such as wash-up the dishes once a day instead of a couple of times a week. I’m gradually being able to do some proper cooking, which I was never able to do. In general, quality of life is 1000 times improved – the starting point was very low, so every tiny improvement seems huge and is greatly appreciated.
Strength is gradually increasing – especially arms and legs. Walking has improved the most. That 5 mile walk around the reservoir has become a bit of a regular habit! I’m definitely better over long distances when walking in a straight line, than when needing to manoeuvre around things such as in shops/town. On a bad day, fatigue (in brain, not legs) seems to be the limiting factor. Herx can still cause loss of function (slight panic a few weeks ago that I might need that crutch again!) and so things are still variable, as I sometimes struggle to walk any distance on bad days.
Cognitive issues are gradually improving, but still room for more improvement. I’m working hard with sudoku and puzzles to improve things. I can now drive to places I know without having to rely on the sat nav (I found this impossible before, as I would get to a junction and have no idea where I was going).
My problem with numbers is gradually improving – I had become unable to recognise or deal with numbers at all. For, example, I couldn’t read out my credit card number. I just seemed unable to reconcile the shape with what number it was and would say a totally different number. I could only work out whether two sets of number were the same by comparing the shape of them, rather than using meaning.
I still frequently forget what I did 2 minutes before and sometimes struggle with names of everyday objects. Trying to put thoughts into words is still often a huge and difficult task, but with glimmers of improvement.
A very weird one is that I’m often searching for something without being to recognise that it is there in front of me. When typing – I can now get the words in the right order, but tend to transpose letters within a word.
In an attempt to explain some of the cognitive problems, I’ll give the traffic light example: I have no problem recognising the colours red and green. I also understand the meaning – that red indicates stop and green indicates go. But the link between recognising the colour and associating it with the correct meaning is missing. It’s no longer instinctive, in the way it is with a ‘well’ person and has to be fathomed some other way. This is just an example – loads of other things are like this as well. Such as – I understand that something straight out of the oven is hot, and I understand that touching hot will burn – but the thing which links the two, which stops you trying to pick up hot things, is also lacking.
A great deal of the pain I had has gradually diminished – but I still get random pains, usually associated with herx, but sometimes for no apparent reason. Episodes of neuropathy/tingling/ pins and needles – but this seems to be caused either by herx or by nerves gradually coming to life again rather than anything negative (it’s similar to the sensations I got as sensation was disappearing, until there was only nothingness).
Even when I’m OK, there’s still a tendency to run out of steam quicker than I’d like. I’m much better at pacing myself these days – but really notice the difference when I am with other ‘well’ people. The fatigue is in my brain – I just become unable to think. It feels as though new pathways tend to tire more quickly than old ones did.
I’ve struggled for years to fathom why I have serum B12 high off the scale (yes, I do realise serum B12 isn’t a useful measurement) but with all symptoms of B12 deficiency. I felt that supplementing sublingually (methylcobalamin, hydroxocobalamin and adenosylcobalamin) did help to some extent, but I was never sure I’d found the whole answer. This year I was able to obtain an active B12 test (this measures Holotranscobalamin which is the only form of Vitamin B12 that is taken up and used by cells of the body) and that showed levels were high - which is good, as it proves the sublingual supplementation is effective. I found out, though, that my lithium level was undetectable – so I suspect that the low lithium level might have been causing the B12 problems, as lithium is needed to transport B12 to the cells. Supplementing lithium orotate does seem to be helping.
I also finally had the chance to do some testing last year through ArminLabs in Germany. I tested positive for Cpn – I’d never for a moment doubted it, but it was still wonderful to finally have a piece of paper as evidence! I don’t seem to do things by halves though, as I also tested positive for Borrelia, Yersinia, Ehrlichia, EBV, CMV and coxsackie. Not so thrilled by that news and it’s been a bit of a steep learning curve.
In those good moments...
I was able to spend a week exploring Northumberland – my first visit there and I loved it, especially the amazing beaches. I drove up on my Birthday on what has to have been the coldest Birthday weather I’ve ever had, with sleet and snow enroute, but I was then treated to blue skies all week – and walked about 8 miles each day! Oh, and yes, I did find another lighthouse to climb!
I’ve spent a week exploring Cornwall (for those not in the UK, Northumberland and Cornwall are at the opposite ends of the country and I live in the middle) ever since I started abx and it’s served well to show progress. Last year I visited St Michael’s Mount early in the week, before I got tired, and it was only stubborn determination which enabled me to tackle the steep cobbled path up to the Castle. This year I went to St Michael’s Mount on the last day of my holiday (in the past I’ve been too tired to do much by then) and I managed that walk up to the Castle relatively effortlessly!
I was able to go to a church music conference in Norfolk for the first time in 8 years. In the past, I’ve been involved with the organisation of it, but never actually been able to go for so many years. Last year I’d hoped to go for a couple of days, but only managed a few hours in the end. So I was thrilled to be there this year, especially as one of the things I still struggle with most is being with people – concentrating to chat and to seem to be OK takes so much effort. I wasn’t OK all the time (felt too ill to get out of bed one day) but I coped.
The most amazing achievement of this year is definitely attending an international conference in Italy. No longer content with just reaching the heights of lighthouses, I took to the skies and flew to Milan!!! I’d already decided not to go, as the cost was too much to risk with things still being variable. But spurred on by being at the conference in Norfolk, I booked just a couple of days before I needed to travel. Again, it’s the first time in 8 years I’ve been able to go. I wasn’t well all the time– and really struggled with the journey there (I’d forgotten what airports are like!) but I feel immensely cheered that I was able to go, as it’s more than I ever expected to be possible. It gave me an opportunity to be my proper self, doing what I used to do. The whole experience definitely made all those years of struggle with CAP worthwhile!
Oh, and I’ve been slowly and steadily decorating the bathroom (not managed anything like that for over 10 years). It has taken 4 months so far, so I’m not exactly speeding through the task, but the ceiling has been painted and wallpapering has been done.
It’s these good moments – when I am able to feel more well than I can remember ever feeling before and have a glimpse of doing ‘normal’ things, which keeps me going, no matter how tough treatment is. I want more of those good moments!
I’m almost starting to feel it might be time to head towards intermittent now. Before that though, I’m hoping to start rifampicin, as, if I don’t do it now, there won’t be the chance once I move to intermittent. Fingers crossed and hoping... x