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Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Mon May 19, 2008 9:48 pm Post subject:
Well, it's day two of another monthlong flagyl pulse. Carrots always welcome, Sarah. I might really need it this time.
Once I get this 'pulse' out of the way, I'm going to add rifampin to the protocol for a few months. Disclaimer: I've been doing the protocol for two years and seven months, so I'm not tweaking or jumping around on different meds without serious thought, everyone. I'm just at that point where I want to make sure I've killed the bug before I back off and move to intermittent therapy. _________________ 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: Tue May 20, 2008 4:55 am Post subject:
Careful now, it made me walk in circles due to the lack of immunomodulation, but I was taking it instead of doxycycline, not as well as.
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: Tue May 20, 2008 11:32 pm Post subject:
Well, I'll gear up for the rifampin while I recover from the month of flagyl. I expect to do flagyl through 19 june, take a month to regroup, then add rifampin to the normal protocol until October, then assess my situation along with my doctor. If she's okay with my pulling back to intermittent treatment, I'll probably join you select few and begin the ratcheting down phase.
I never thought I'd be able to say this and I'm soooooooo grateful to be able to. But we'll cross that bridge then. For now, I head back into fulltime flagyl-land. _________________ 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: Sat Jun 07, 2008 7:12 am Post subject:
Two weeks of flagyl down, two to go. Had to take a two-day break in order to celebrate properly with someone from the board who's come to Chicago to consult with my doctor for abx. Dinner and a toast to both of them tonight, then back on flagyl tomorrow.
Not much to report on the reaction end of things. It's really hot and humid here and I feel tired when not in air conditioning, but I was able to haul a forty pound air conditioner from the attic yesterday without killing myself on the steep attic stairs or passing out from the hundred degree temps in the attic. I think I'm doing well. _________________ 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 Jun 08, 2008 7:24 am Post subject:
Wiggy, I had a couple of bruises from resting it on my thigh as I opened the basement door and I noticed they weren't awful ones, like I used to have pre-abx, so that's a plus, too. I used to bruise if you touched me and plenty of people left finger marks on my arms when they touched me. Not any more.
By the way, we celebrated last night as planned and never knew a tornado had touched down a couple of miles from our restaurant!!! _________________ 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 Jun 08, 2008 10:45 am Post subject:
So you used to get awful bruises as well? I used to only have to look at myself in the mirror to bruise, but no longer. I also once ran up the road when I was 15, dripping blood behind me but not realising until someone pointed it out. Then, of course, it hurt.
Funnily enough, your weather seems to be coinciding with ours at the moment, hot and humid all at once, but not quite so hot. So far as I know, we have had no tornadoes though!
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 Jun 08, 2008 4:45 pm Post subject:
Sarah, My mother used to say my bruising was a sign of anemia, which she had on and off as long as I can remember. Between the abx and the iron supplement I now take, it seems to have normalized. I still get bruises, as I lead an active and sometimes reckless life, but they disappear in hours or a couple of days, rather than the huge, weeks-long messes of my youth.
Um, you may have a few of our tornados, if you like. They're coming fast and furious this season and LifeontheIce, Arttile and I were far too close to last night's little visit. _________________ 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
Hey, now thinking about it - I do not get as many bruises either- I was always running borderline anemic and now am doing better too. We had storms and tornado watches all night here.
Joined: Aug 02, 2006 Posts: 119 Location: S. California
Posted: Fri Jul 18, 2008 12:59 pm Post subject:
Mak, you are the Mac-Daddy when it comes to the abx pulses. A month on Flagyl? Why so long? It is really encouraging to hear when someone is able to do so well with activity despite the heat and MS. I look forward to the days of surfing and snowboarding again. As you know my last few months have been pretty dark with the head injury and then the BPPV crap. I am refreshed by the no new lesions and no enhancing lesions on the latest scans. That does not discourage my neuro from keeping his eyes wide shut when it comes to the possibilty that this protocol I am going alone on may actually have some merit. Oh well he probably graduated at the bottom of his class. My vertigo issues have toned down a bit and I remain on the abx, but the flagylation will have to wait until at least the vertigo subsides.
I see that you have been on abx a LONG TIME. I thought that the protocol wsa a bit shorter in duration. It is hard to believe it has been 8 months for me and only 2 flagyl pulses. I think of you when i look towards the future and the end of the abx therapy.
Are you on any special diet? I am going to give the SWANK a try. It is not too restrictive and basically is an anti-inflammation diet. If nothing else it will help cardio health.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Fri Jul 18, 2008 4:22 pm Post subject:
Grump, Drat! I nearly made the two month mark, but not quite. I took flagyl this time from 19 May through 17 July.
I found I was feeling a little too stressed at work and felt a bit toxic, so I thought maybe I'd killed whatever I could for the moment and needed a break. (I cheated and took no flagyl for two days when Arttile came into town, so I didn't have to worry if we had a drink or two at dinner.)
Again, my only reactions were many petechiae on my torso, forearms and thighs, a couple of moments of wobbly balance on turning my head quickly, one day of a little eyestrain in the eye that had the optic neuritis back in August 2005 and some noticeable change in my tinnitus, to the point it was sort of annoying in its constant change in 'volume' the last two days of flagyl. I tried to ride it out, figuring the flagyl was doing some good in that arena (finally), but it was too distracting to continue. I still have to work, after all. I've grown accustomed to having a paycheck for a few decades and would be loathe to give it up.
So, I think it's time to hit the rifampin. Soon, soon.
I know you're going to get to this point one day, too. The time goes way faster than you think, and once you acclimate to downing all the pills and organizing your meds, you don't really think in terms of 'how soon can I end the treatment', but more like 'I'm going to do this til I think I've done all I can to kill this'. I was thinking I'd try it for a year, yet at the 33 month mark, I realize I'll have to give the rifampin a shot, then taper off with intermittent therapy and it'll be 2009 around the time I'm feeling ready to end the abx entirely.
I've got nothing but time now, so I don't mind. It sure beats the feeling of inexorable decline I had in August/September of 2005. I'd do whatever it took to never feel that way again. _________________ 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: Fri Jul 18, 2008 4:33 pm Post subject:
Oh, heck; forgot the diet question! The single 'food' change I've made in my life since the optic neuritis attack in August 2005 is I've eliminated nutrasweet/aspartame from my life. It just seemed to make my body 'buzz' once the cpn invaded my brain. Even now, if I'm stuck with diet soda at a function, or someone mistakenly puts it in my coffee, I notice a slight fuzzy feeling. (Nowhere near as bad as what it was, but disconcerting nonetheless.)
Otherwise, I still eat my junk food, my fast food, chocolate, pretty much whatever I did before. When I started on abx, I made a conscious effort to change nothing, so I'd know if it really was the antibiotics that cured me and not have it muddied up by making a lot of other changes.
Because of Raven, I've added blueberries when I can, and I do have to admit I doubt I'll ever go back to the days when I thought vitamins were a waste of money. CoQ10 is one of my very best friends and NAC will never be eliminated, for the rest of my life. _________________ 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: Sat Jul 19, 2008 11:12 am Post subject:
19th May to 17th July is more than two lunar months, so you did make it, then added on three days just to make sure! (I suppose that makes up for the two days you took off.) This means I definitely owe you a seraph, so I'll get working on it.
Don't be aghast, Grumpy: the most number of days I ever did was five.
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: Wed Jul 23, 2008 4:05 pm Post subject:
Sarah, You are too kind. As I lie here on my fainting couch, fanning myself, unable to lift my head due to the after-effects of two LUNAR months on flagyl.... oh, wait, someone else's daydream, not mine.
I honestly had very little reaction to the flagyl this time. I noticed a couple of days of short-temper, but that could have been due to anything, in retrospect. I did seem to have some brain fog at the end of the pulse, but nothing like I had three years ago and very short-lived. Petechiae and a little eyestrain in the optic neuritis eye was pretty much it, so I've no excuses to nap and lounge about. Darn, I think I'm healed.
I'll have to call the good doctor and discuss adding rifampicin. In the meantime, I plan to take a couple of weeks to clear any toxins, then go back on full time flagyl. I had to take a pass on the blood drive at work yesterday and, due to my rare blood type, I was hounded quite a bit about it. I really want to be able to donate again someday, so I must, must, must, clear this infection for once and for all. _________________ 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: Wed Jul 23, 2008 4:53 pm Post subject:
Oh, you've got a rare blood type as well! Trouble is, until all the medics know for sure what causes MS, we are both stuck with nobody accepting our blood. They won't just take our word for what causes it.
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.
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I might really need it this time.
