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 antibioticsⁱ 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!

Ok, so to most people it was probably just be a meal out at a restaurant with friends – but, for me, it was a huge adventure which I want to share with you all, as I know everyone here will understand how huge this adventure was.  And I hope it will help anyone who might be struggling and wondering whether all this will be worth the effort in the end.

I sent my 23andMe sample back about 6 weeks ago.  I received an email this morning telling me that the analysis was unsuccessful - seemingly, not enough DNA in the saliva.  I do get the chance of a second try though.

I’m so disappointed!  In fact, I’m surprised at how disappointed I am!  I suppose I’m doubtful about the second attempt – I did everything exactly as instructed the first time, because I tend to be a bit obsessive about such things.  It says that the majority of the cell analysis is from white blood cells found naturally in saliva, not by epithelial cells.  Perhaps I’m lacking white blood cells?

I’m always a bit reluctant to shout too loudly about the good bits, as they so often have a tendency to disappear again the next day, seemingly shy at being spoken about.  And I’m always a bit reluctant to mention the not so good bits, because I prefer, instead, to keep telling myself that surely all of this will become a whole lot easier any time now – as I still wait patiently for that to happen! 

I’ve always known that most of my problems with CAPⁱ are down to the fact that my body is not good at detoxing.  Well, that’s a bit of an understatement really – truth is, my body doesn’t seem to know how.  I have lots of long-standing B12 and methylation issues, and so have been taking all the various methylation supplementsⁱ (in accordance with my Yasko Methylation Panel results) for over three years.  I take methylcobalamin, hydroxocobalamin, adenosylcobalamin, Methylfolate (5-Methyltetrahydrofolic Acid), SAMe, lithium orotate – and a bucket load of other stuff too. 

All this has definitely helped - but not enough to get me through pulsing.  Herx and die-off still overwhelmed my body completely and was taking many months to resolve each time.

I don’t generally tend to post when I’m feeling a bit fed-up – I suppose I’m another whose Mum always taught me that if you can’t say something good, don’t say anything at all.  And I hate to seem like a miserable one.  But it feels as though it’s time for an update – you might wish to get a cup of tea or something nice and herbal before starting to read though!

I’m absolutely convinced that glimmers come along with one purpose in mind – to give us a taster of the possibilities, in order to keep us going.  I’ve had a rough time for the past 10 weeks, since the last pulse.  I was especially fed-up with it all last week, as I’d planned to go away for a few days, but it wasn’t looking hopeful, as I was feeling too poorly to even get out of bed.  I was starting to lose hope and couldn’t face the thought of ever pulsing again.  But then, by some miracle, I did manage to have my few days away.  And I’ve come back with so many glimmers, that I really feel I need to share them.

I tend to be a bit reluctant to shout out about improvements too loudly, because, whenever I do, those improvements seem to become shy and bashful and then disappear again the next day – but I feel as though it’s time for an update.

It might be a good idea if you get yourself a cup of tea before trying to read this one!!!

After the last glimmer and the few days of feeling so much more well, I decided the time had come to try again and see if I could add the missing antibiotic.  Just for a change, I decided it would be metronidazoleⁱ this time, instead of tinidazole.  My experiences with tini (one tablet would flatten me completely for about 3 month) had put me off for ever.  I was optimistic that perhaps metronidazole would be the one for me.  I felt I had to give it a try, or I’d never know.

The usual pattern continues – I’m starting to get used to the way it works now.  I seem to spend a lot of time with die-off symptoms, inflammationⁱ, pain, nausea, overwhelming fatigue and generally feeling very poorly.  Then I gradually improve, to the point where glimmers appear, usually more glimmery than the time before.  They don’t tend to hang around for more than a few days, before it’s right down to the bottom again – which, for me, seems to happen in the matter of minutes, where I go from feeling the best ever to feeling a bit odd and shivery, have to lie down, and then can’t move again for many hours.

I’ve noticed, on Facebook, that some have been posting a ‘2013 Year in Review’.  Mine would probably make really slim reading on there, but it made me think that it’s about time for my 2013 CAPⁱ Year in Review.  And it just so happens that I’m having a good day and feeling a lot better today, after 3 months of feeling really poorly, so I’m a happy – and hopeful – one.

It feels as though it’s time for an update, as I’m finally feeling that I may have turned the corner with all of this.  I really don’t want to tempt fate by speaking too soon, but I’ve had glimpses of being more OK than I’ve been in ages.  And that seems like something good to share here!

I’ve not updated for a while, mainly because I’ve been too ill most of the time.  I really can’t believe I’ve been doing this for nearly 20 months now.  It’s not been easy - slow and steady definitely seems to be the only way I can do it.  I’m quite conscious of having to go at a slower rate than many others here, but I’m getting used to that now.  I think we all just have to find our own way through, as it doesn’t seem to be the same for any two people. 

I had a really successful appointment with my neurologist yesterday.  I’m so pleased!

I was able to explain why some things (especially motor function and strength) are so much worse at the moment, as a result of taking tinidazole, and that all seemed to make sense to him.  It would have been difficult to hide, as my walking is so much worse.  But he continues to be impressed by the improvements since I started CAPⁱ, mainly the increase in sensation all over, which had completely disappeared before.  So much so, that he said that he feels the improvements definitely justify the use of abxⁱ.  I’m thrilled to bits with that!  Given the way things work here, I think that’s probably more than I’d ever hoped for.

Time for a 16-month update.  I had intended doing a 12 month update – but things were not too good at that point, and it might have all been a bit too miserable.