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Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Sun Mar 23, 2008 10:38 am Post subject:
Mackintosh asked:
Quote:
Sarah, When you say you lost spatial awareness, when was that? And how would you describe it? Sorry - this stuff fascinates me.
Well, it was like this: in my work as a fine-artist I have to be able to translate what I see in real life onto the canvas. Not being inclined to abstraction, this requires some accuracy. By the time I started on the Queen Mary 2 commission I had lost the ability to do this. Looking at real flowers, I just had no idea how to start translating the image to the canvas. Even looking at preparatory sketches done maybe six months prior to this was extremely hard going. The sketches were, I remember, 1/6 th the size of the finished canvas so it should have bee easy but I found it so hard and frustrating. Of course, to enlarge something that much needs more than just duplication of the correct size: several years before that I was working on a large image of a violin to use s a shop front sign. To do an accurate enlargement just didn't work and subtle things needed to be changed. Then I could work out what to do but by 2002, forget it!
Now I can do it again and my various metre rules and so on have been largely stored away in the cupboard where I found my lost oil paints.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Sat Mar 29, 2008 9:07 pm Post subject:
Day 29
Still at it; will report in on 01 April. Hmmm, how apropos. _________________ 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
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Sun Mar 30, 2008 7:01 am Post subject:
Admitting defeat, I've got the Seraphs ready and waiting!
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Sun Mar 30, 2008 7:18 am Post subject:
Sarah, Had you not posted, I might have forgotten to take the flagyl today. Ironic. Hang onto those - I'm not sure if I'm stopping the flagyl just yet. More later ... _________________ 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
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Sun Apr 20, 2008 6:37 pm Post subject:
Okay, everyone, here's the final chapter in the saga. (I've also added it to the original post.)
NINETEEN DAYS AFTER.... THIRTY-ONE DAYS OF FLAGYL
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. _________________ 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
Joined: Feb 10, 2006 Posts: 350 Location: Northern Virginia
Posted: Mon Apr 21, 2008 8:43 am Post subject: wow
Mac WOW!
Do you mean to say you've not been on Rifampin? This was the first drug we started. I thought Flagyl was the last one to introduce.
I'm not sure I understand the fingernail scratching thing. I need to go back an re-read your thread here. Congratulations on finishing a month of Flagyl. Amazing!
Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Mon Apr 21, 2008 9:02 am Post subject:
Yes, congratulations Mac! Very wise to wait a few days in case there was any big fall-out, which luckily there wasn't. You're a glutton for punishment, though, starting again in a month. I do understand your reasoning for doing it, though: I would be exactly the same in your boots.
Ken, I didn't start rifampicin until six months of treatment, therefore three months of metronidazole. I never liked it because it made me walk funny, being lacking in immunomodulation.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Mon Apr 21, 2008 11:14 am Post subject:
Ken, No scratching of fingernails! Those little white half-moons, at the cuticles, seem to disappear in a lot of us with cpn. As treatment progresses, they reappear over time. Mine have tried several times to 'come back', but they haven't quite made it and retreat again and again. Oddly, I count this as a measure of my recovery. I want them back permanently.
Thank you both for your congratulations. I still can't believe it myself. I remember being relieved to end five days of flagyl and thirty-one was a real push.
Sarah, taste is recovering. Not back to the pre-flagyl month, but it's returning. Individual ingredients are more noticeable and texture is taking a back seat to flavor.
I think thirty days off is a minimum, for me. I'll just do normal abx and sometime in May will dive in again. The only way to describe it is feeling toxic, which I guess is no surprise. Not so much feeling bad as just feeling not quite a hundred percent. I'm drinking more water and taking more C0Q10. _________________ 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
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Mon Apr 21, 2008 11:53 am Post subject:
Try a bit more alpha lipoic acid as well. And don't try what Roger the neighbour's cat nearly did this afternoon!
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Mon Apr 21, 2008 1:10 pm Post subject:
Lori, I can't wait til you're in the same place I am. It's coming for you, I'm sure.
Sarah, If the cat went into the drink again, no, thank you.
I'm officially on vacation at the moment and contemplating raking the yard or clearing room #1 (of five) in preparation for floor-sanding here in two weeks. So, of course, I'm dawdling on the internet and avoiding starting either one! _________________ 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
Joined: Sep 11, 2007 Posts: 665 Location: southern California
Posted: Mon Apr 21, 2008 2:21 pm Post subject:
Hey Mack-
Glad to see you doing so well. We're still CAP bystanders, but I'm a believer. May be in our future.
Quick question...haven't seen petechiae mentioned much on the boards. My hubby's had them since MS dx, up and down shins and top of feet. Has anyone ever explained how/why you have them? His docs remain mystified. Do you attribute them to the flagyl? Cpn die off? Wondering how this might be related to your MS.
thanks!
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
wow, a month... that does sound like a lot. i've taken flagyl for just 5 days with one other antibiotic (for other reasons) and that was even tough.
is this part of the CAP protocol or are you going beyond the recommendations? also... i noticed your day count was in the 900's. i thought the CAP protocol was 2 years?
i apologize if these are questions that are answered in the literature. i'm still absorbing
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Tue Apr 22, 2008 1:05 am Post subject:
Keep reading! After two and a half years, I'm still reading and still learning, even from Dr. Wheldon's protocol paper. And things have changed so much, just since I started; there is much more known about cpn now than then and more studies are implicating cpn infection in a myriad of diseases.
The protocol has no set time frame. I think everyone agrees a year would be the absolute minimum, but some of the heavier cpn loads will take years. Somebody correct me if I'm wrong, but I believe the pioneer doctors have revised their projections to up to five years of treatment.
One of the purposes of Vanderbilt's newly reopened lab is to seek a more efficient treatment, rather than this long, drawn-out affair we undergo. (Um, no complaints here; it still beats the alternative.)
Basically, right now, it's a case of treating until you see no more improvement or reactions to treatment. That's actually why you see someone like me doing thirty-one fun-filled days of flagyl; I've been on a plateau and have never really had big reactions to treatment, anyway. It was time to see if there's any need for me to continue. (Considering I did have some reaction to it, I've decided to lay back for a month, then do it again. I'm also still seeing improvement, so I'd rather 'overkill' the cpn than underkill them.) _________________ 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
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Tue Apr 22, 2008 1:13 am Post subject:
Petechiae. I had to give that some thought, since I recall it being addressed a lot, but that's over on cpn help, so I have to dredge it from my feeble memory.
I've noticed petechiae on adding new abx or doing flagyl. It hadn't been much of an issue for at least a year, so seeing dozens of them after a few weeks of flagyl was a surprise. I've read they are blood vessels erupting and I've read they are due to toxins surfacing. Perhaps someone with serious knowledge, not hearsay, could answer to this. I'm quite jealous of those who comment their petechiae and skin tags disappear on the protocol. I'm still waiting for two tiny skin tags to fall off and not holding out much hope for it. (But since that hard pearl or marble under my skin didn't start to dissipate until I'd been on abx for a year and a half, I suppose anything could still happen...) _________________ 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
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