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Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Thu Feb 05, 2009 6:06 am Post subject:
Younger Elder here! Some people start flagyl nearly straight away, but three months is gauged as a time when you should find it easier. I started at three months an at full dose. I got few reactions until the third pulse when I ended up sitting with my back to the Aga, crying with the movable pain in my right arm. This was only the one time, though, and lasted a couple of weeks.
Other people find taking it a whole more difficult matter, but I would say that if you are aware what might happen, jump straight in, but maybe keep off the Powerplate for the duration!
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Thu Feb 05, 2009 9:22 am Post subject:
It's not crash and burn.
I know it feels that way and Kim gets that way sometimes. But it's not crash and burn. In the world of investing it's called retracement. Kim was flying the first week or two on ABX until she took Azith and got serious die-off. It can be scary and make you quesiton what you're doing. It's one thing to read about it, but all together different to experience it. What would be really helpful for all is if there was a way to easily measure dead bacteria so you could know that you're having trouble walking today because of huge die-off. Someone like me would find a way to make a chart of this and look for patterns each month. Yes, I am obsessed with this effort, but everyone here knows that already.
Joined: Sep 25, 2005 Posts: 402 Location: Chicago area
Posted: Thu Feb 05, 2009 9:38 am Post subject:
I started flagyl at six or seven weeks, so I'm all for starting at two months. Remember, I started abx immediately after being diagnosed, so your mileage may vary.
Start gingerly and work your way up slowly. No need to do what I did and begin with a full five-day pulse. You'll have time enough to work up to full dosages.
As for the spasticity, you have to remember that abx therapy doesn't stop the MS/cpn infection in its tracks. First, the abx have to get in there, then they attack the bacteria while its still conducting its business of multiplying and entrenching itself, then the abx kills more and more of the bacteria until you get to the point where you're no longer generating more bacteria than you're killing. Depending on your bacterial load, this could take a while.
Add in the fact that you will now experience die-off and the resulting toxins will be floating free inside you, making you feel like dog food. And die-off causes inflammation, which means areas of infection will be inflamed (just like in a real MS attack) and those 'pseudo-exacerbations' will scare the heck out of you. THey're no longer the result of your body chewing on itself, but they will FEEL real. This bacteria will not go quietly; it's going to try to convince you in any possible way that killing it is not a good thing. Remember, if you quit abx, the bacteria gets just what it wants - a docile host for it to use, abuse and eventually kill. _________________ 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
I also started flagyl during the second month. Everyone is different so don't get scared if you find you don't feel so great. It is definitely when the "feel worse before you feel better" part began for me. As MacK said, go slowly so you don't get discouraged if you have side effects. But keep in mind that this is supposed to go this way. And you may be a lucky one and have very little problems-you won't know until you try!
Thanks for the advice. For the record: Took flagyl 3X daily for 3 days. Weak as kitten at times, no aching. So stopped because of busy week at work. Had my easiest/quickest shower entry this morning for some time.... ? relevence Be well WW
Joined: Sep 25, 2005 Posts: 402 Location: Chicago area
Posted: Tue Feb 10, 2009 2:09 am Post subject:
Well, that's encouraging!
I tested myself today, just to be sure, and found I am fine showering with my eyes closed, while washing my hair. At the beginning, that's what scared me most; not being able to balance in the shower, much less being able to close my eyes and stand in the shower! _________________ 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
Da ddiwrnod Wallwalker. I too have found that I can now take a hot shower, not lukewarm and like MacK can close my eyes to shampoo and rinse my hair - without touching the walls of the cubicle.
I have completed 19 pulses so far and took it uber slow at the beginning and I am glad that I did because I was wiped out with pulse reactions for quite some time at the beginning. But it was worth it because I can now stand on either leg with or without eyes closed, touch the tip of my nose with eyes closed...you know all those silly little tests that GP's do? I used to wall walk a lot but it doesn't often happen now. You will find that you get some improvements, but they won't last and you will think that it's not working for you, but that's the nature of the beast. Two steps forward then one back, but with patience you will get there in a roundabout way.
PS. Having met Dr Wheldon I can confirm that he is sane. _________________ Progressive MS dx. 12/06. Currently on CAP for CPN: Wheldon protocol. LDN 4.5ml.
Diolch Speedbird. Completed 5 day pulse on Wednesday (2 days ago). Could have tolerated pain but legs and core became very bendy- and not improving much as I'd hoped since stopping. Scary. Can now understand why people space pulses out- came very close to carpetmunching! Realised that if I did go down I wouldn't get up on my own. On it goes....
On another note I have been offered Intrathecal Baclofen Therapy. Any experience out there?
WW
Glad you are feeling better!
Are you keeping a log of how you feel? I find that to be very beneficial as it allows me to look back over the months to see how 1) I am improving (sometimes little things get missed if they are now written down) and 2) I can track side effects to which antibiotics-very helpful.
As you probably know this is not a "quick fix" for anyone. You have to just keep on keeping on, as you are doing. Thanks for posting here about your experiences.
Hey, had gradual improvement after pulse but spasticity has increased significantly and is quite worrying. Fall last week led to extensive carpet munching which is depressing. Had difficulty bending my legs to get scooter in boot (trunk) last week. So initial optimism has mellowed but received next 3 months antibiotics yesterday and plan pulse during vacation in 1 week. So you're up to date. On it goes
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Sat Mar 07, 2009 5:51 pm Post subject:
You will find that this journey is full of ups and downs, but gradually the ups will become predominant.
In the early days, I fell often, more painful in a house with mainly polished floorboards, but the good side of that was that I never broke any ones, because of the vitamin D intake.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Mon Mar 09, 2009 9:08 am Post subject:
WallWalker,
I wish I could draw in a post. I'd draw you my impression of how the pulse looks via a how does it make us feel measure. But I see Kim has only a few days a month that are actually improved over the prior periods and most of the month is below the last peake. Not to say that she feels worse most of the time .... she feels better most of the time. But, in a subjective judgment, I see it like a series of connected U's that slopes upwards. showing just a tad of new benefit on each new sweep upwards. I think that's one reason so many of us post how we feel each day, week, month - it is reassuring to know that others have the same experience and it helps once the rollercoaster takes of to be able to look back and know that what's happening is part of a normal recurring pattern.
Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Had a rather traumatic 3 weeks. Admitted to hospital for trial of intrathecal baclofen. Became very weak- unable to stand or lift head above 10 degrees. Consequently became dehydrated, very low blood pressure, drip much fluid, catheterised and he standard high temp, confusion and UTI. Been in 3 hospitals and finally returned to my own home last night after almost 3 weeks. Still weak but just about able to look after myself- just. Continued only the doxycycline (been on ciprofloxacin for UTI). So we restarted supplements etc today and hope for a fairly rapid return to what was a lousy position to start with. Fed up trying to beat this- almost always get worse as a result. I know, I know but been really unwell- a tad worse than man flu....... BW Wallwalker
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