A few nagging symptoms. A vague feeling of plateau. A general dissatisfaction. All were creeping up the last couple of months and I realized I'd not done a flagyli pulse since Christmas week. My doctor understood and okayed my latest adventure.
Today is day ten of what is planned to be a thirty day flagyl pulse. Thirty days was an arbitrary number, but one I think 'do-able'. My longest thus far was something in the nineteen day range, maybe more; I don't keep meticulous track of my daily trek through antibiotic therapy.
This will be different. I'll try to keep a running journal of the 'pulse', as I plan to do it a second time before I then add rifampicin into my cocktail.
Days one and two were non-events. No change, no difference from my 'normal' life. Days three and four found me a bit testy, but only just enough to notice, nothing that couldn't be kept in check. Plus, I was off work and not inflicting myself on anyone. Days five and six were interesting; I woke to a surface numbness in my right thigh, though it felt 'crawly' under the surface. There was little to no sensation ON the skin when I ran my hand over it, so I made a mental note to be aware of my leg in case of exposure to heat or sharp objects. Both days, it resolved later in the day. Day nine, a little facial flushing on exertion throughout the day and a little 'burn' on the front of my left ankle, much like one of my first MSi symptoms. Day ten, nothing new to note. The front ankle 'burn' is minimal and the thigh numbness is slight.
I'm taking my usual pulse dose, which is three metronidazolei tablets, 500mg each. Normally, I split one and just take 750mg in the morning and 750mg at night, but this time I'm trying to space them out to every eight hours, when my schedule allows. (I'm trying to be a little bit gentler on my body, since this will be a long run, but I'm not inclined to fussing over pills, so may just slip back into the 750mg twice a day routine.)
Now the disclaimer: don't try this at home, newbies. I have been on the protocol for eight hundred and eighty-six days and am only now straying hugely. I take all of David Wheldoni's adjunct and vitamin list, except evening primrose oil. I am ninety-five to ninety-eight percent 'cured', as best as I can determine. What I'm doing now is covering my bets and trying to make sure I do a 'deep-cleaning' in preparation for a round of rifampicin before going to intermittent antibioticsi soon. I don't do any of this lightly, because a diagnosis of MS on 19 August 2005 devastated me and I won't go there willingly again.
We shall see how this plays out...
DAY ELEVEN / 887 days
Today was interesting for what did, and did not, happen. I had contractors in to set the Jacuzzi in place and all that entailed. A couple of electrical details had to be tied up in the pantry, as well, before new cabinets arrive, and a recent college grad picked up a few extra dollars doing clean-up and some landscaping editing. It was busy around here.
By eleven, I'd been up and down two flights of stairs at least a dozen times. By three, I'd done them at least two dozen, plus several more trips tonight to do laundry, retrieve stuff from the car, feed ten week old kittens (who did the stairs pretty often themselves today!), etc, etc. By three p.m. my calves were screaming no mas, no mas, but I didn't have time to rest.
Taking account tonight, I find I still have enough energy to make a run to the grocery store after I post here. Toes on my 'unaffected' foot have tingled a few times today. I had a bit of warm flushing once I sat down to recoup for an hour, around five tonight. No change in my tinnitusi, either way. Foot burn in the front of the left ankle has come and gone several times today and my feet have felt what I think David Wheldon described as fasciculationsi (sp?) on and off all day. (Really weird feeling and I can SEE the little twitches and snaps on the soles of my feet!)
The one thing of real note is that, around five, when I sat down to rest awhile, I noticed I felt really, really good. Good about what I'd accomplished today (two trips for hardware, carrying many heavy power tools and boxes of tile and lengths of cast iron pipe, cleaning, painting, sawing debris into pieces small enough for the trash guys to take... good about my health - no need for a nap or feeling of brutal exhaustion... and, lo, kind of a 'blue sky day' feeling, which I haven't had in a couple of months. The 'all's right with the world' feeling. Not euphoria, just peaceful. Fine drug, flagyl.
DAY 13 IS NEARLY DONE / 889 Days
Wish I had more to report. Yesterday I was just a little tired, no real ambition, though I had the 'use' of the recent college grad here to haul, clean and sort. He got off easy, since I just wasn't into it mentally. I sorted, then he tossed and hauled. Once he left, I spent two hours on the net hunting down plumbing supplies and ordering shower parts and replications of antique push-button light switches. And time was again spent on the floor, cultivating kittens and domesticating them, in contrast to their semi-feral parents who also reside here.
Went grocery shopping at eleven pm (yes, we have mostly 24/7 grocery stores around here, which I learned last night is not so common elsewhere in this fine country). Energy was good by then.
Today was more contractor-angst, with one of them needing to leave in the middle of the day for a building permit (for someone else's job!), so not too much got done here. I ran to the lighting shop twice to retrieve my refinished/rewired fixtures and get extra parts, to the hardware store for three brass screws at 52 cents each (spent more in gas than that, I'd bet) and now to Home Depot because my bargain antique light fixture ($35. when it should have been a few hundred) needs special sized bulbs. It's a beautiful sixty-degree day here and the birds are singing and I could be wrong, but my tinnitus may have backed off a bit in the left ear, though not the right. (Very hard to tell, since one is still doing its high-pitched tone...)
Last night, as I was dropping off to sleep, I did notice pain in my left eye. Felt like it was going straight back into my brain. It pulsed with my heart and went on until I fell asleep. I had that kind of pain with my initial MS diagnosis, during the optic neuritis episode, so I'm holding out hope that something is still being fixed in there. My 70% loss of vision in that eye recovered fully, but my depth perception is ever-so-slightly out of whack in that eye and I'm selfishly hoping it will recover, even now.
Left knee is a bit weak today (had surgery on it maybe fifteen years ago). I wouldn't trust it on a mountain trail or if I had to balance long on that leg; it suddenly doesn't feel dependable. Typing is good, spelling seems okay, though my vocabulary lapses here and there and I have to use not quite the right word because the 'rightest' one won't come to me. Mood and social interaction are quite normal. I am starting to hate taking the flagyl, though. I'm so pilled out, one more pill three times a day is an imposition. On the bright side, I don't even notice the taste anymore!
End of DAY 17 of flagyl (happy St. Patrick's Day, all!
This will, I hope, be brief. I was out of town a couple of days and then knocked on my tail by either day sixteen of flagyl or poorly timed doxyi. Yesterday, I was ready to quit: body temp up and down like a yo-yo every twenty minutes to an hour. First cold, then hot, then ice cold (not mental perception, but actual cold and heat). Then the nauseated feeling. Could it be too much St. Pattie's Day? No, not really my style. No unusual food. No unusual drink. No alcohol mixed with flagyl.
I decided against taking flagyl before heading out to work this morning, thinking I'd take one pill after work and one at bedtime, just to avoid yesterday's borderline gag- reflex thing. I felt amazing today. People at work were telling me they couldn't believe how perky and cheerful I was. Was it the two cups of coffee after five days without coffee? Was it the other, giddy side of porphyria? Was it my pure joy at going back to work (not)? Who knows? I was full of energy when I got home, ready to tackle the world. Hah!
I took flagyl pill number one with a handful of supps, plus the day's doxy. NOT a great idea. A wave of mild nausea hit twenty minutes later. Kept a wastebasket near the bed for the next hour and worked hard at not moving. Then, everything was fine again. I ate dinner and everything was still fine. I sort of dread taking the second flagyl tonight, but I'm determined to get at least 1000mg into me today. I'll be taking it with food, just to ensure my nausea isn't abxii-on-an-empty-stomach related.
So, an accounting: day fifteen brought a little weakness in the knees and a little disorientation when rising from a crouch and turning my head (only turning brought on the slight dizziness, not just rising), and days fifteen and sixteen brought a heightened awareness of smell and light and some sinus pressure. Kind of a migraine without the head pain, if you can comprehend the oddness of the idea.
Right now I'm fine. Truly fine. And if I can get more days like the one I had all day before the bubble burst, I'm in for the long haul. Day eighteen of flagyl tomorrow. I have always loved rollercoasters and I'm on the E ticket ride now.
Day 22 of flagyl,
I know I’m boring. I have nothing really to report. I feel ever so slightly ‘off’, like I’m missing half a beat or misfiring on one cylinder. Nothing I can’t compensate for, but I know it’s there. My one friend at work who knows about the MS and the protocol commented privately today that he noticed I’m not remembering names again (twice couldn’t recall the names of famous people we were talking about), so I guess that’s a flagyl-effect. When I told him I was on day 22, he was stunned. He remembers me at my foggiest, when I used to call him my ‘portable memory’ and had to lean on him to fill in the blanks in some conversations, until my brain caught up.
Worked all day, came home and did some construction on the money pit, now heading for the pet food store and then to the grocery store. A herd of kittens has just learned how to climb to my desk, so I’m off in a minute. They’re cute, but lethal to a laptop.
No exhaustion, no lethargy, no eye pain (for Michele and Ella), no nothin’. Mood is good and social skills seem fine. No barking at people, not even the twit who parked across my driveway last night. All good.
NINETEEN DAYS AFTER.... THIRTY-ONE DAYS OF FLAGYL Updated on 20 April 2008
My doctor advised me it might be time to stop. I didn't. I toughed it out the last three days, just to say I did flagyl the full month of March. Duh.
Okay, so I did a full thirty-one days of the stuff at full dose. Well, except for the couple of days I retched my doxy and flagyl in the last week of this 'pulse'. I found, if I went back to eating a little something with the abx, I had no troubles, then was able to take them normally again, with only water, after three days. (Might have been unrelated to the flagyl pulse and just a queasy stomach.)
I though I'd wait a few days after the pulse to see if there were any big side-effects. There isn't much to report. A little 'ghost' of a few MS symptoms for a few days, more short-term memory disturbance than usual, a lot of 'vibrations' in my feet, like standing on a little engine, a TON of new petechiae (tiny red dots) that disappeared in a week's time, continued reduction in the marble, then seed, now tiny spot, under the skin on my left hip, I had a little more hair loss than is normal, but it's already growing back in (I can feel a boatload of tiny little hairs about 1/3 inch long) and the half-moons on my fingernails are really trying hard to re-emerge full-time. They still wax and wane and only four are there consistently (thumbs and middle fingers).
Here's an excerpt from an email to my doctor:
"What has happened is all after stopping flagyl. A little foot burn, some involuntary twitching in my toes, some need for additional sleep, some pain in teeth on the right upper side, including a molar that needs a root canal, and some fluctuation in the perception in my 'bad' eye, the one with the optic neuritis that started me on this whole journey."
"The eye was brightening, dimming, brightening, dimming... and at night, when I just closed my eyes to go to sleep, I got flashes of brightness, like when the optic neuritis was at its worst. It was a little scary, but I've been doing the 'shiny red bottle cap' test on the eye every day since it happened and it seems like my color perception is a little improved in that eye now. Not identical to the good eye, but closer than it was."
"Tinnitus has been interesting; it's been varying in volume. Near the end of the flagyl pulse it was really annoying me, like turning up the volume a full notch. Then, it got less in one ear and stronger in the other. I really wish I knew what the issue was, but if flagyl can affect it, there's still hope it will go away altogether at some point. The buzzing in my feet came and went a little more than normal, too, so I'm hoping that will another of Rica's 'whispers of improvement' and it will go away for good soon."
All in all, I'd say there was still cpn to kill and this long pulse was beneficial. I'm going to take April off and sometime in May I'm going to begin another month-long pulse. I'm shooting for 01 July to add rifampicin into the mix for several months. Unless something unforeseen happens, I think I'll go to intermittent therapy on the anniversary of my starting antibiotics, 06 October 2005. Let's first see what tomorrow brings.
Meanwhile, my energy is good, the house is full of sixteen-week old kittens (two off to new homes this week and one left to adopt out), work has been demanding but not a problem at all for me and I made it through a night in the emergency room with my mom without too much backlash (no sleep that night, an earthquake at dawn and an eight a.m. start at work that day). I'd call this pulse a success. P.S. Mom's fine.
Thus ends DAY 926 of antibiotic protocol. >>> more
22 April 2008 - I forgot one odd thing. In recent weeks, I've recovered an ability I'd lost in the year before I was diagnosed with MS. I can once again tell the time without looking at a clock. I used to be able to tell the time, within a few minutes, accurately, no matter the weather or location. It gradually faded between 2001 and 2005, til I would be hours off the mark. In the last few weeks, I tested myself regularly, just because it's so cool to have it back again. I've been dead-on, to within three minutes, each time. I really do like getting my old life back again!!
Last edited by MacKintosh
on Tue Apr 22, 2008 6:50 pm, edited 8 times in total.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi