stephbg | A visit to Dr NF (Reply)

It seemed to take forever but on Thursday last I finally went to see Dr NF about my Pyroluria diagnosis and hopefully general improvement.

It's been several years (2009) since I last had a concentrated effort at testing and consultation with new doctors and specialists. It was exhausting and ultimately fruitless. I've tried many things in the period since but haven't scared up the will to see someone new. It's hard to argue with the weight of evidence that says such efforts are enormous and never ever rewarded, so as someone who has few spoons to work with, avoidance seemed only sensible. But sometimes you have to do things that don't seem sensible.

So, after a week or so of prep, a month or so to get a Pyroluria diagnosis, and a further three week wait for an appointment I saw GP (but nutritional/alternative/holistic friendly) Dr NF. I needed the three weeks to complete the medical history paperwork provided. (Providing a complete history to a new doctor was one of the chief hurdles I'd been avoiding.) Even then I didn't attempt to chase down exact dates and my entire medication history. I did check that the whole thing was required, as some sections dealt with apparently irrelevant hormone replacement therapy and weight loss topics, but this doctor is a holistic type so complete it I did as instructed, plus attachments.

I was with the doctor for about an hour, plus two hours worth of travel and hanging-about. The SoR location required a long stretch of freeway, and although the trip there wasn't too badly affected by the roadworks, the trip home at peak hour looked so monstrous that Husband decided to go the longer coastal route and keep moving rather than join the carpark for an hour of stop-start. It made for a long afternoon.

Dr NF had a very professional attitude, which I appreciated. We didn't bond at all, but I was impressed at his unwillingness to make promises that he could improve my situation. Sounds weird, but I found it reassuring. He's not going to attempt to deal with any of my major health issues, but will focus only on the pyroluria diagnosis and attempt to treat mineral and vitamin imbalances related to just that condition. Even then he made no promises of improvement, but if I'm able to reduce some of my medication as a result, I'll call that a win. My expectations have been well and truely minimised.

As expected he did give me a hair mineral analysis kit, but acknowledged that it was "a bit of a blunt instrument" and "not rocket science" and he understood why mainstream medicine was wary of it. He said it was useful as an indicator for further investigation, and I'm happy with that assessment. Gotta start somewhere. Even though the DIY hair collection process on the following day proved traumatic (may post separately), I'm hopeful the test will reveal some useful data.

I've also to get some bloods done: standard ones such as homocysteine, B12, folate, iron study; and slightly fringy ones caeruloplasmin, plasma zinc, serum copper, and blood histamine. Again these can only be done at Clinipath West Perth so I'm waiting until Monday for Husband's driving services. I was in agony just sitting in the car as a passenger (and am paying for it still three days later), so driving would be much worse. Damned weather.

When I told him about my reactions to the B3 and B6 supplements he was most annoyed that I'd been given such doses without some of the blood tests he had just ordered, and took the whole breathing difficulties thing quite seriously. Looks like Dr Nigel the psychologist is on the nose with more than just conservative GPs.

He asked many many questions, some of which I recognised from the pyroluria symptom lists I'd seen, some of which seemed to be personality test questions. Naturally I found it difficult to answer almost all of them with either a straight yes/no. Later I recalled that I'd seen "argumentative" in some of the personality trait lists in pyroluria literature, and realised that I probably ticked that box too. He wanted rather more family history details than I had to hand, but I was able to paint a broad brush.

As I was leaving he asked if I was cold, and did I have a jumper in the car (I was in a t-shirt). "Oh no," I responded, "I'm boiling" (the surgery was well heated). "But I've got these," I added, pulling out my arm warmers. "If I put on a coat my torso will boil and my wrists will freeze, but these are about right." He then said the word I've heard many doctors say and dread to hear: "Fascinating." He also cracked his first smile of the hour. Nice to know I can still entertain :/

So, we'll investigate things pyroluria-relevant to start with, and if we seem to get on I'll ask if we can perhaps look at tackling potential (treatable) sources of fatigue because he's bound to have more ideas than my idea-free regular GP. I think some of the bloods are already in that direction. Also while I think it highly unlikely that Lyme disease is involved, he's got a Lyme disease poster in the waiting room so would probably give me that test if I asked for one. (Mum, really, I don't think I've got Lyme disease!)

Will see him next in 2-3 weeks after test results come in, and look at feeding me teeny tiny doses of supplements then.