I know that the reason for a blog is so when things are getting a bit better, you can look back to how bad things were.

Or, when things are going bad, you can look back to how worse things used to be.

This is my reason for this post.

Paula doesn't like me "airing my dirty laundry in public", but when she is better that's when she can tell me off for doing it.

The way I see it, this blog is for both of us.

One new symptom that Paula has had since starting the abxi that is pretty noticable, is a change in her taste buds.

Many foods that she used to like, she now cannot stand and make her feel sick.

Anyone else have this happen to them?

Mark

Paula has had a pretty bad week where hockle is concerned.  Her mucal discharge seems to be never ending.  She doesn't seem to have had a break from it for about a week now.  When I say a break, I mean even an hour or so!

Most of this week, it has been constant hockling up into a tissue every few seconds.  At best, she may get a break for about a minute, then it starts again every few seconds.  As the day goes on, it may subside to a hockle per minute.

To re-iterate, this mucas seems to come down the back of her throat from either her left ear, or from her nose - we are unsure of this.

Paula has been on the full dose of Roxyi for nearly 2 months now.

Her "hockling" continues - some days not so much and some days quite a bit, but I feel and hope that in general it has slowed these past couple of weeks - here's hoping!

She continues to build up on the D-ribose - still 3/4 teaspoon of the stuff in a 75cl bottle of water.

She does seem to "crash" a lot more lately.  She would only crash when not pacing enough, but she is pacing as well as she used to, but still crashing - meaning that the time that I see her and can talk to her these past couple of weeks has reduced a lot - I hope that this is die-off, as there doesn't seem to be any other reason why her fatigue would increase so much lately.

Paula has been on the CAPi for about 6 months now.

She started on the NACi November 28th 2007, added Doxyi in Jan and has been on the full 300mg daily dose of Roxyi for 5 weeks now.

Not many improvements in her condition to speak of as yet, but as she is so severely effected we are taking this protocol very slowly.

As she is tollerating the Doxy, Roxy and NAC so well, we plan to start the next stage of the protocol  (Tinidazole) towards the end of July as it is said to give the Roxy 2-3 months before adding Tini.

Paula has been on Roxyi for 2 or 3 weeks now.  These last few days have been as Ruthless1 would call Troll Queen days.  I realise for the people who are suffering from secondary porphyriai that it is a horrible thing to go through.  It is nearly as bad for the carers sometimes.

Until the night before last, Paula was only on 12 caps of charcoal once per day.  We have recently increased it to 12 caps twice per day, and last night Paula plucked up the courage to take some D-Ribose and she didn't have any bad reactions from it.  She plans to take the recommended D-ribose dose and we hope that as well as giving her some extra energy, it may help the porphyria symptoms to abate a bit saying as she can't take Glucose because of glyceimic reactions.

Just a quick blog entry.  For most of Paula's life, she hasn't produced very much sweat at all - virtually unnoticeable in fact.  She always complains about mine though! :-)

Since starting on the Roxi, she is sweating again, much to her disgust, but to my delight, as I know that this means she is getting rid of more toxins in her body than she used to.

She calls it skin poo!

:-)

Mark

1st Roxi -  Sunday afternoon.

It's now Tuesday night and so many of the reactions talked about on this site Paula has had since Sunday, including strange pains in her muscles from many a year back when she had injuries when she was a kid.

She is in quite a lot of muscle pain at the min, which started these past couple of days - She is normally free of pain as her main symptom is massive fatigue which still continues.

Her muscle pain is manageable though.

All her symptoms do seem to have upped quite a notch since starting on the Roxi which she will slowly increase the dosage of when she is able - It's not the Great North Run, but the London Marathon, never mind a race where this protocol is concerned -  we both understand this.

I wasn't gonna do a blog.  Was gonna wait until Paula was able to do it instead, but, I thought - what the hell!

Anyway, Paula took her 1st Roxi earlier today - 75mg.  She didn't have that much of a reaction, so we decided to increase her 2nd dose of the day tonight to 150mg.

Within a few minutes, she had what I can only describe as "air hunger" as said on this site.  This lasted for about 30 minutes.  She now has increased fatigue and tingling sensation in her skin including her tongue - all major symptoms she had just after becoming bedridden back in Feb 06.

Now, 90 minutes later, she is just very fatigued, but surviving.

We have decided to change Monday's dose of Roxi to 75mg twice per day and build the dose up.

Mark