Gibbledygook's antibiotic log

[gibbledygook]

It's nearly 38 days since my last big dose of flagyl, it's 11 days since starting N acetyl cysteine (NAC) and 8 days since my last 5 day dose of flagyl. I'm feeling a little disappointed that the burning in my left foot seems to have become a permanent feature for the last month or so. Equally the stiffness in my right leg seems to be fairly persistent. However I haven't given myself a really decent rest from the flagyl so maybe that's why. Fingers crossed. I walked 900 meters unassisted 2 days ago so my walking isn't so bad though it still doesn't feel at all right BUT better than the worst it's felt. I still have had no funny kidney l'hermitte signal since May 2005. I have rare movement induced phosphenes, occassional stabbing pains in fingers and yesterday in my head somewhere. My bladder is still, um, very regular and my bowel still keeps acitivity to a minimum! Where's the autumn relapse?!

I've had a low level cold since starting the NAC but this could be because it is finally getting moderately chilly in London. Apparently the Thames is going to freeze over this winter. But so far this prediction looks way off.

I just received from the Freedom Pharmacy a largeish packet of Rifampicin and I'm awaiting Amoxicillin. I am very keen to start these but I think I ought to start with the Amoxicillin. Has anyone any views? Also is there any harm in taking the amoxicillin and rifampicin with the doxicyline and roxithromycin and metronidazole?

[SarahLonglands]

The low level cold is what David refers to as NAC flu. Most people seem to get it when they are still getting rid of the organism.

I should start the amoxicillin before the rifampicin because what you will probably experience from that won't be much different from what you are already experiencing from the NAC. When you start on the rifampicin you will have to stick with it for a while. You can't just stop and start it because it will lead to resistance. I took it for six months when I was six months into the treatment, in place of doxycycline. Then, when I went onto intermittent therapy I restarted the doxycycline because rifampicin would not have been suitable. It is not at all immunomodulatory so you will probably feel it!

Sarah

[yguner]

I took rifampicin in combination with various antibiotics(doxycycline,flagyl,INH) for one year with no problems.But amoxicillin and NAC are giving me more spasms and pain so i am thinking to pulse them as well.

[gibbledygook]

My mean red blood cell volume is coming down!!!

On the 27th February 2004 it was 96.9, ref 80-99, this is the day I went to see the physiotherapist regarding a weird kidney area l'hermitte type symptom.

I was then diagnosed in March 2004 when the symptoms had multiplied and my walking was suddenly hit.

My blood cell volume then got really high...

On the 15th July 2004 it was 99.5, ref 80-99
On the 11th August 2004 it was 99.2, ref 80-99

Today, 11/11/05 it was 98, ref 80-100

This may well be statistically insignificant but I'm hoping it's a trend which will go in tandem with an improving all round health!

[mrhodes40]

This may well be statistically insignificant but I'm hoping it's a trend which will go in tandem with an improving all round health!

That would be great! It is small, but small and steady wins the race to health it appears here huh? Why not small changes in bloodwork too? It certainly is not going up then.

I hope that foot burn is going now. I think about you often and hope for your health. Those long pulses worry me and I'm glad to hear you report that you're better than ever. I check for such a post first. It's good to hear the news you could go 900 meters again. I can't wait for you to suddenly turn the corner again and do something like run down the street or zoom off on a bike or something.
blessings
Marie

[gibbledygook]

It's interesting that the NAC is being a problem for some of us (see yguner above). I've been taking NAC for 18 days and have been sneezing and snuffling quite a bit since around the time I started taking it. I've had a very slowly moderating foot burn for the last month. It has been slightly better over the last week. The movement induced phosphenes seem to have vanished. The numb right hand is the same. The night spasms sometimes seem a bit weaker but then the following night renew their onslaught. The bladder seems possibly a little less demanding. The right leg weakness/malcoordination/stiffness has levelled off and I can manage unassisted a maximum of 900 meters but I'm still sometimes very stiff after being sat down for a while. I'm rather disappointed that no more profound improvements have been noticed. There's still no way I could run anywhere and my dreams of going skiing again one day are still firmly in the realm of fantasy.

At least it is now properly cold in London!

[Jimk]

I am very keen to start these but I think I ought to start with the Amoxicillin. Has anyone any views? Also is there any harm in taking the amoxicillin and rifampicin with the doxicyline and roxithromycin and metronidazole?

There is no harm in taking all of these from Stratton's point of view, as he sees each as addressing a different phase of Cpn and is the "get everything in every way" kind of thing. (See interview with Dr. A, and Cpn Simple on the CPn Help site). However, so many people have also done fine on David's version where you might switch out the doxy for the rifampin as Sarah describes.

I would not personally start the amoxi and the rifamcin at the same time, simply because you don't know what reactions you'll get to them. Best to start one for a couple of weeks then add in the other as you get a sense of reactivity. Dr. A referred to introducing Rifamcin and seeing if patients "get hammered." If you are British, acccording to David you might get a "brisk" reaction, or, I suppose if you are an American given to understatement (this last clinical difficulty can be treated by watching more TV, especially Fox News).

I found the amoxi, as did Ygunnar, very difficult, inducing a lot of inflammation. NAC is much milder, which makes me concerned it isn't doing the trick as well with killing EB's. I'll try a pulse of amoxi in a week or two and see, and report back. It may be that NAC will help winnow down the EB level and make the amoxi more tolerable.

[SarahLonglands]

Ah, but Jim, if you are worried that NAC isn't dong the job as well because the responses are milder, you are taking tinidazole in preference to flagyl precisely for that reason!

[mrhodes40]

I've been taking NAC for 18 days and have been sneezing and snuffling quite a bit since around the time I started taking it.

Gosh Alex, me too. Wierd isn't it? Let's you know it's getting to something for certain. I really have been taking it easy. I just feel bad. And sad too. But that might be in good time. Cytokines mediate depression: in other words the cytokines that are active in inflammation also dock at depression sites triggering that feeling. That's why people feel blue when they are sick. It's the same physiological chemical. When we have inflammation we have cytokines. it's natural to feel down when you are reacting such a way to something. I have to keep telling myself this. As the inflammation wanes and our bodies use up the cytokines, we will be happy and joyous and upbeat again. Especially when we can do more again.

The right leg weakness/malcoordination/stiffness has levelled off and I can manage unassisted a maximum of 900 meters but I'm still sometimes very stiff after being sat down for a while

Well crumb! I hate stiff after being sat down for a while. It's so bizaar. I get these sudden spasms and I do not like them at all. But Hey! 900 meters is a long ways! That's good! and levelling off comes just before the big upturn. It has to. It's about 44 days since your last big pulse, but this time with you taking both more medicine in general and NAC. Lots for your body to do! Are you good about taking all your other supplements? They are designed to be protective of your nerves as they are accidentally molested by the macrophages cleaning up the debris from the dead CPn.

Well I used to like to ski also. I live in Washington State, so water and mountains everywhere. up until a few years ago I would get a lump in my throat every year when the first snow reports came out (I've had MS for 15 years) I still have my last cute snow suit. Worn once! And what a fine day that was. I asked my husband if we could at least go to the mountains and see the snow and throw snow balls and eat hot chili and wine and cheese once. He said maybe. He knows that'd be some work! I don't walk worth a darn -YET- so it'd be hard to get me in to where snow is unless it was like 2 inches.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference.
(Last verse The Road not Taken Robert Frost)

Here we are on this road less traveled, us few. A rocky path it is, but we will see that difference eh?
Blessings
Marie

[gibbledygook]

Ooh! I like the poem.

I just did my weekly exercise. Normally I can just manage 10 minutes on the x-trainer and then I have to sit down as my leg is quite wobbly by then. Well today my right leg felt good enough to do 15 minutes non-stop (1.5km), thereafter I was pretty wobbly but no wobblier than after my 10 minute sessions. This IS an improvement for sure. In the summer I was struggling at 8 minutes, same level, same x-trainer but it was very hot then and I felt a lot wobblier in general back then.

Oh for the mountains!

[mrhodes40]

HEHE! I'll meet you there. Don't you love the cold tightness in your nostrils on a bright snowy day in the mountains? You can smell the cold.
I can almost feel the cold stinging my cheeks but my legs warm and liquid as I wait at the top to swish down, planning my route so to hit the second steeper hill on the right for a better attack. Strategy! So it goes and we plan to go down this MS mountain with the same strategies. Amox, NAC etc. A good run for us all! And hot toddies at the bottom!

And you know what? Here it is at 45 day. It took about that long for the last big pulse too didn't it? It just takes time. Another week or wo and we'll hear new news from Miss Alex! Can't wait
Blessings
Marie

[kitkat2]

Great news again, Gibble!! An increase from 10 up to 15 mins on the X-trainer is noteworthy. This is very motivating for you, no doubt, and for all is as well. Keep it up.
And Marie, thank you for your wonderfully positive attitude. It is contagious, you know. I hope to 'catch' it!

[gibbledygook]

Marie, you are absolutely right regarding the time lag between long pulses and improvements; yesterday was, I think, day 44 post long 10 day pulse.

Feeling more and more confident that this slow almost imperceptible increase in neurological function is the MS reversing.

[mrhodes40]

That IS good news! I will check every day for your next thrilling advancement. Surely soon now...
Blessings
marie

[gibbledygook]

I just spent a week in France where I added an extra 600mg of NAC to my existing regime of 1,200mg NAC per day. I started sneezing a lot and my eyes went quite red but that could have been the freezing cold Mistral wind. My walking was also very poor but I didn't have a scaled map of anywhere so can't give precise lengths. Today I started my 9th pulse of flagyl. For the previous week i've had a pleasant respite from left foot burn but that was back in moderate play from this morning.

I've just read that sulphur containing pills may interfere with the absorption of antibiotics. As the NAC contains sulphur I was wondering whether I should take it 2 hours away from the antibiotics. Does anyone know about this?