paron's blog

Down the home stretch on my pins -- KlonoPIN and RifamPIN

Submitted by paron on Sat, 2009-01-31 19:55

It has been an embarrassingly long time since I posted. Things were just progressing so slowly that there was little to report.

Take "air hunger," for example. In 2006, it was a weekly occurrence. Typically on a weekend evening, I'd just gasp for air for a few hours. Very embarrassing, so I'd go off by myself. By mid-2007, I'd found that getting really warm cut the episode short, and by then the episodes had dropped off to maybe one or two per month.

Sleeping wellness

Submitted by paron on Sun, 2008-02-17 07:53

Just a note to hearten those who have trouble sleeping, especially during a pulse.

During a pulse and for most of the recovery period, I typically sleep for a while, then I need to get up and rest for a while, then I can sleep some more. For my last two pulses, though, I have noticed that I sleep straight through the night for the last day or two of my recovery period. If that trend continues, there's some hope of a return to a normal sleep pattern.

Hang tough, everyone -- better times are coming.



What kind of fool am I?

Submitted by paron on Thu, 2007-10-18 03:17

Charcoal. It's annoying to schedule the two-hour NPO gap around taking it. The capsules tend to float up and get stuck in my esophagus. If the charcoal hasn't had time to wet down, a small cloud of it comes up if I burp -- and it makes me burp. Good thing I don't smoke!

All this is to say that there are perfectly understandable reasons why I stopped taking it a few months ago. I was pushing way too hard; so hard that I quite literally didn't have the energy to eat enough at mealtimes. I had to eat what I could tolerate, then wait a while until I had enough energy to eat some more. Needless to say, this made scheduling around charcoal nearly impossible.

Skin Tag Wierdness

Submitted by paron on Thu, 2007-10-18 02:55

Sometime between 14 to 7 days ago, virtually all the skin tags around my neck and shoulders turned into flat brownish patches. Now there's just pink, new skin like a small sore is healed where many of them were. I think they're gone!

I noticed it a week ago. I had just removed a particularly annoying one the week before that. I was checking how it was healing, and here I was covered with these dry, brownish patches where all the others had been. I showed Dianna, and she confirmed it.

I suppose my immune system is recovering enough to keep the HPV suppressed again. I'm going to take it as a sign of my improving health. I've never heard of this, so thought I'd better record it. If they come back, I'll post here again and let everyone know.

Year and a half update.

Submitted by paron on Sun, 2007-09-30 16:16
I haven't posted in a while, not because there's no progress, but because it is so uneventful. Let's see: I can now putter around the workshop for 2 hours, dig a big hole in the back yard for an hour, and go to the library in one day without being hammered the next, if I take two naps in between the activities. Or, I might work at my computer all day, vacuum the house, then go to the grocery store.

Best labs in years, 18-month update

Submitted by paron on Sat, 2007-06-23 05:55
As a part of my annual physical, my blood work came back the best it has in years. My fasting glucose was in the normal range for the first time since '00 or so, and my cholesterol was low enough that the doctor said that even if I were high-risk, he'd be happy with that number. So, this is very, very good news -- I'd hate to give up using glucose to stop porphyria. No significant weight loss, sadly, although my doctor cited that as the reason for my improved labs (this with a puzzled look, since he could see that the loss was only 5-10 pounds.) Overall improvement remains slow, but mostly positive. We are 3/4 of the way through moving houses, which muddies the water a lot. Stress and exertion galore!

One year breakthrough!

Submitted by paron on Tue, 2007-01-02 17:06

It took a year, but I did it: pulse 26, I went 5 days on metronidazole. The first day after was a two-napper, but it was also the day after a holiday weekend and I had no nap the day before.

In fact, on Saturday (day 3), I painted the bathroom, which was a bit of a stretch, but I was recovered by Monday morning. I surely couldn't have done that a year ago.

 I'm still not sure that a week between pulses is sufficient recovery time, but it sure runs up the count. 10 days might be a better minimum, even for non-CNS loci of infection.







P23, P24, Niacin, and Circumin

Submitted by paron on Sat, 2006-12-02 16:01

I am finishing pulse 24-- one more Flagyl to go. Niacin and turmeric (herb containing circumin) are definitely kicking it up a notch. No, make that several notches. No real improvement in the gray skin around my eyes and on the backs of my hands; it still reflects my overall energy supply.

I know that I blogged my last pulse as relatively uneventful, but I am getting a longer view now. I have had to lie down twice today because of panted breathing, I can't get warm, the fasciculation is nearly continuous in my thighs, and I am paying the price for my extravagant energy use this morning. (I clipped our Corgi's toenails.)

I am trying to decide whether to back down on the niacin, the turmeric, or the Flagyl. Opinions?


Pulse 23

Submitted by paron on Sat, 2006-11-18 05:57

This will be pulse #23, and I haven't blogged one in a while. I added niacin and turmeric caps to my regimen, and they seemingly caused some exacerbation. At least, I'm not feeling as well as I normally do at the end of my inter-pulse "recovery week."

When I added the niacin and turmeric (3 days ago), I went back to sleeping an hour or more when I came home from work. I'd been resting, or dozing, for 1/2 hour. So far, there's been no real impact on the dark patches around my eyes. They look much the same as ever, perhaps worse. My belly acts like it used to toward the end of a pulse -- lots of gurgling and gas.

All of us here know that you have to wait a while to judge the long term effects of any change, because of die-off and porphyria. So, I'll give the niacin and turmeric a chance -- it seems unlikely that they'd cause any long-term harm.

Pulse 15

Submitted by paron on Tue, 2006-08-22 02:07

Pulses are growing more tolerable. This is my 3rd four-on/seven-off cycle, and it wasn't too bad. I suspect the doctor will add the fifth day at our next contact.

One thing does concern me, though. Those sooty patches are spreading! I had a longish day on the last day of the pulse -- church in the morning and family activities until 8 pm. (Just a lunch and talk that went on and on: nothing unusual for us.)

We got home and I set the table for dinner, sat down to eat, and had to get right back up -- I thought my hands were dirty. After I washed them again, I looked more carefully, and they had patches the color of the skin around my eyes. It cleared up somewhat as I sat and ate and had a quiet evening.

Then today, two days post-pulse, Dianna noticed a patch on my right shoulder. My hands and face were sooty, too. Just as an experiment, I tried hyperventilating for about 30 seconds, and it worked! I pinked right up! Dianna said my lips pinked up as well. 30 seconds later, I was sooty again. Did it twice, just to be sure.