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Hey Alex day three for me no med, so it's looking good. Oh man those spasms ar so terrible and yucky, I am thrilled! have you ever injured your muscles just because your spasms were so strong? I have. Sometimes they grab and you are just there hanging "ahhh!!!!ahh!!!!" and you are thinking ot yourself good grief how strong am I- I'm going to break something. It's a big big deal to not need the antispasmodic. I hope the best for us both

I want to say also that a nice warm bath with a good bit of epsom salts I use about 1-3 cups is really nice for that unbearable cold. I like to add bubbles too. ANd a jacuzzi (homedics portable type). It makes me weak for a bit because it's warm, but that's temporary and the warm lasts a long time. I like to think as I am in there with my heart pounding away that it's pushing the abx into the deepest tissues and getting every last bug! I remember that LeGac felt this was crucial to his treatment of MS with abx in the 60's; balneotherapy.
Blessings
Marie

Oooh, who is LeGac? I've not heard of him/her. Balneotherapy sounds great although I assume that does mean having a bath...whenever that happens I turn up the temperature which is bad bad news for the walking!

I'm afraid I've now had mild spasms in the right leg for the last 2 nights. Still, I only ended up taking 1mg of zanaflex on each night so they can't have been those awful muscle-wrenching ones which kept me awake for most of last year.

Hello Alex, you can find out more about LeGac here:

http://thisisms.com/modules.php?name=Fo ... pic&t=1784

He started treating MS as caused by an infection, with early tetracyclines, way before CPn had been discovered. Unfortunately because the organism wasn't even known about, he didn't treat for long enough or use metronidizole to get rid of it completely, so it fell into disuse.

Great news about your spasms, by the way.

Sarah

I'm feeling quite a lot of pain from my left foot burn and my right leg coordination has totally gone to pieces. I've been on the isoniazid, rifampicin and amoxicillin for about 2 weeks now. Has anyone else noticed that their symptoms got worse on this combination?

Alex

Gibbledy-
I just started adding the INH to my doxy/zith/NAC combo. Just half a tablet (about 150mg), but 12 hours later I hurt EVERYWHERE! This stuff is really potent for Cpn... and I've been on the protocol over a year now. So if you are hurting after two weeks of adding the INH, I'm betting that's the cause.

Hi!

Thanks for the reassurance! Sometimes it panics me when symptoms seem dramatically worse. This morning I awoke after a second night in a row of no spasms and no anti-spam medication and my right leg feels MUCH better. But boy, it felt weird yesterday, with a pronounced malcoordination from the start. Interestingly this malcoordination was a very loud echo of my very first right leg symptom back in December 2002 when I would notice a funny timing for my right foot tread after walking the 2.5km to the gym. ah those were the days! Up with the lark at 5am to walk 2.5km in the gym, 40 minutes cross-training, weights, punchbag, then a stroll to the Tube to Oxford Street to try to rent apartments to actors and actresses, to bewildered students, to international accountants and opera singers and always walking them to the flats. I loved walking!!

This isoniazid, rifampicin and amoxicillin combination seems to have had a totally AWFUL effect on my walking. Now I limp pretty much from the word go, there is no stamina at all and I have to get along very slowly. The left foot burn is also back pretty much permanently. Mmmm. If this treatment does work it certainly raises doubts along the way.

They have had a totally awful effect on your walking because of the lack of immunomodulation. When I changed from doxycycline to rifampicin for six months it had the same effect. It didn't last forever, though. I know rifampicin lacks the immunomodulation of doxycycline and I guess that isoniazid does as well:

http://www.emedicine.com/emerg/topic287.htm

This is why you should only take it under medical supervision.

Sarah

It's been about a week since my last posting when I had taken fright from my woeful walking ability. Since then I have come down with a nasty sore throat and today snotty nose syndrome, strange flu-like symptoms of the brain and general malaise from a good old cold which my partner saved for me.

Despite this cold which started last Thursday my spasms have continued to be absent or very mild. In the last week I have used only 1mg of zanaflex (last night). In fact for the whole month of January I have so far only used 10mg of zanaflex which was my usual nightly dose for all of last year. So that's something very positive.

I managed 900meters of slow steady walking today.

The painful left foot burn has lessened over the last 4 days and is now more of a bubbling sensation. This has often happened before so I'm not exactly holding my breath on that.

The movement induced phosphenes which seemed to increase massively at the same time as starting isoniazid, rifampicin and amoxicillin have dramatically abated.

My numb right hand is slightly number or something odd is happening to it.

My right leg is still quite stiff in the mornings and after sitting down for some time but isn't as bad as in the summer.

My bowel function is great.

My bladder function has become more hesitant.

I have a sore throat and nasty snotty nose and slight fever. I have been cancelling lots of outings due to this cold so it was nice to be able to manage however inelegantly the 900 meters to Coffee Republic.

Darn it, I meant to add that I have for the last 4 nights added 5mg of melatonin at night which have really helped with the sleeping. In fact, apart from last night when owing to several pints of hot toddy (hot lemon and shot of brandy for appalling cold) I needed the toilet, I have been sleeping right through the night. The absence of spasms and melatonin is a great thing for sleep.

So my regime now is amoxicillin (1,000mg), isoniazid (300mg), rifampicin (600mg), quercetin (1,000mg), NAC (1,200mg) and melatonin(5mg).

Hey Gibble! Sounds like things are going along nicely with the spasm med at least, goshi hope the foot burn gets better, but great news on the walk! It makes sense that the lack of immune modulation would cause this kind of worsening along the way. Can I ask, did you platueu on the "old"regime of doxy/azith and then go to the rifampin/INH to step up the heat? And I remember you were the bold girl to go 12 days at a stint of flagyl then be "down " for a long time with less walking ability and all and after the big pulse in july or so when you got better you said then you felt good about the going down because you knoew then it was just part of the improvement. So this too must be part of getting better, does it feel the same as a big pulse of flagyl? Are you keeping up on your probiotics also?
I am very interested in your tale
marie

Hi Marie,

I've been on the isoniazid, rifampicin and amoxicillin for 3 weeks now and the last week has been a LOT better than the first 2 weeks. It doesn't feel quite like a flagyl pulse. It doesn't seem to make me depressed very much like flagyl. However it has made the bladder more hesitant which is like flagyl. My right hand has become more numb or stiff or something which didn't really happen on flagyl and my bad walking happened instantly on this combination whereas my walking once went really haywire about 10 days after a very long pulse of flagyl. However my right leg is now feeling a bit like it's on the road to recovery.

I started this combination of abx because after 8 or 10 months on the doxicycline, roxithromycin, pulsed flagyl I thought that I was plateauing but that was BEFORE I noticed that the spasms had nearly disappeared and by the time I had noticed I already had the prescription for isoniazid etc. So in retrospect I see I may not have been plateauing however I'm glad to try the isoniazid/rifampicin/amoxi combination because Dr Powell on the CPn Help.org website suggests that these antibiotics are really very effective too and it's probably good to have a change of treatment after 8 months just to keep the bugs under different forms of attack.

I'm also taking 2 pills of Solgar multi-billion acidophilus a day and that has dramatically changed the bowel movement story from once every 4 days to once a day.

Hope this helps.
Alex

Thanks Alex. I t feels different. This is interesting, I wonder why? And the leg went bad right away, but has recovered somewhat by week three beginning. Cool! Most of us can handle three weeks of something.

I am wayyy behind you so not at this time thinking about the INH type regimen since I'm only at flagyl 3 and not yet much better in terms of walking (I think of you every day walking to the starbucks and imagine I will do something similar too sometime soon...), but it's good to know there's more to do and tackle at a later date.
Thank you for the extra info!
Blessings
Marie

It is now four weeks since starting the isoniazid, rifampicin and amoxicillin. During the last week I did a 5 day pulse of metronidazole. I also started taking 5mg of melatonin 2 weeks ago. Unusually I only had short sharp moments of painful foot burn last week on two days on the pulse. Usually I have constant foot burn practically the moment I take my first pill of metronidazole. In fact I really enjoyed this pulse of metronidazole because I have a feeling the stiffness in my bad right leg is going. Usually in the mornings when I take my shower my right leg is really quite stiff during walking and under the first drops of water but this last week it hasn't been nearly as bad. In fact this morning my right leg felt almost normal. Yesterday we went for lunch with my partner's parents and at the end of the meal when I stood up the right leg wasn't nearly as stiff as it can be after a long period sitting down. The same applies for the day before when I took my sister for a 4 hour birthday lunch. At the end I stood up and walked away from the table with only mild stiffness. The night spasms continue to be absent or mild and I have only taken 1mg of zanaflex last week.
Movement induced phophenes are noticeable only at most twice a day. My right hand feels numb and sometimes colder than my left hand although my left hand occasionally feels colder than my right hand which is all rather confusing.
My bladder control seems okay. My bowel last week has stopped being so regular but I suspect the metronidazole was wiping out the acidophilus from Solgar.
My cousin bought me this miraculous piece of gym equipment, called a power plate, which basically shakes you. This has given the most pleasant tingling sensation in my right leg after a few minutes use. It says in the blurb that Russian astronauts used/use this to prevent osteoporosis developing and to strengthen muscle. My cousing is a great one for helping the sick and she must have read somewhere that this powerplate machine is good for MSers. Anyway it feels fantastic although I can't say whether it's helped much.
Am looking forward to my next pulse of metronidazole!

Good for you, Gibbledygook. Wish you more success with the next pulse.