stephbg | This *is* that post–Dr NF update (Reply)

OK, a smidgen late, but here's the roundup of my latest visit to Dr NF on Monday 23rd September for medication tweaks, with bonus 2 week progress report. Unlikely to be of general interest.

The bones of it are just tweaks to some dosages, as it was theoretically too soon to see any effects. That said I reported increased sleepiness which I thought might have been related to improved serotonin production (i.e. what the Pyroluria treatment was supposed to do). I said that I planned to start cutting my fluoxetine in response, which was one of the aims of the exercise. Two weeks later and I've gone from 100 mg to 90mg and then down to 80 mg with no apparent ill effects, although I'm still more sleepy than I'd like. I'm calling that a small victory, done against the official advice of both doctor and psychiatrist. Off the record, Dr NF was pleased and will no doubt be more so when I report the success I've had so far.

We started very conservatively with B6 dosage at 200 mg, and I'm to try to build that up to 400 mg. At present I seem to be tolerating 300mg without any nausea so I'll attempt 400mg soon, perhaps tomorrow. I have had some bad reflux and vomiting, but I'm not sure where I can attribute that. It's possible that's more associated with the Endep I've been taking for nerve pain relief, and/or codeine for sundry kinds of strong pain. Pain's been very bad in recent weeks and months, much of which I blame on the weather. I've not been able to walk much at all or get things done. I am praying for some warmer drier weather soon. Have had only the odd day of it here and there but it makes a big difference to the pain.

Dr NF was surprised that I got headaches from P5P when I tried 40mg, because it's a B6 precursor and really should have affected me in exactly the same was as more B6. For now we're leaving it at 20mg and he remains convinced of my special snowflakiness.

I'd run out of Manganese a week before the appointment and it took a whole week to get more, so we'll need to give that some time to build up again. Stuff's hard to get.

Had a Vitamin D blood test which came out still low, so I've gone up from 4000IU to 5000IU, but split over morning/night.

Told him that I'd modified his prescription for the AM/PM custom mix to replace 75mg Zinc Piccolinate with 75mg Zinc Citrate because I thought I'd had absorption issues with the piccolinate. He was mild unimpressed, said that the two were not equivalent (usually – I might be different), and had me add a further 30mg Zinc Piccolinate on top.

I think that's about it. He gave me scripts to top up supplies of a few things until the next appointment where it will be time to revisit the mast mix with some of the dosages we've been working out separately. He suggested a compounding pharmacy in Baldivis as being a bit closer to home, so we went there after the appointment and dropped off the scripts, arranging for them to be posted home. They were compounded off site and would have been couriered anyway so we were just saving them (and us) an extra trip. Instead of a couple of days it took another week to get most (but not all) of the stuff. Still waiting on the final 40x Mn capsules.

I take a vast number of pills and capsules every day, and it's no fun. Some days and nights it's very hard to face them all. Some days my swallow reflex doesn't want to work all the way down, and if I miscalculate and push on regardless I end up losing some of them when they just bounce right back. It's fortunate that I'm in no rush in the mornings, because the routine can take a very long time to get through.

How many? OK, including standard prescription meds, baseline painkillers, and the digestives I'd usually take for a standard breakfast, morning currently involves 23 pills or capsules, and night time is 15 pills or capsules for sub-total daily of 38, plus however many painkillers and mealtime digestive enzymes I need throughout the day. Let's call it 48.

48 little (and not-so-little) things to swallow, every day. I'd really rather not.

That's it really. I see him again in about a month.