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Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Thu Apr 09, 2009 5:26 pm Post subject:
If l'hermitte's is the feeling a rubber band has snapped inside your neck/shoulder, with a little electric shock added in, I had that just before I started abx. It happened maybe twenty times, whenever I dropped my head forward, toward my chest. It went away within the first ten days of abx and, thankfully, hasn't come back.
Wow, it sounds like everything is going well, so far! Pulse this week? _________________ 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 12, 2009 Posts: 1148 Location: London, UK
Posted: Sat Apr 11, 2009 5:47 pm Post subject:
I have realised that azithromycin is an abx that makes me feel better.
As I don't think I have CPn I wonder what azithromycin particuarly works on and if I can take it everyday...??? (I have taken it 3 days in a row and feel a lot better)
I don't want to cause abx resistance by taking it daily but if the azithromycin is working on something different I wonder what other abx might work with it??? Maybe the flagyl will kill off whatever the azithromycin is dealing with.
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Sun Apr 12, 2009 7:06 am Post subject:
No harm to take it every day if you can stomach it, but why don't you think you have Cpn? After all, you do have multiple sclerosis.
If you are getting rid of something else, though, you will only need flagyl if the organism has an anaerobic phase. Cpn is forced into this phase by taking the two antireplicatives and as far as I know this doesn't apply to anything else.
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 12, 2009 Posts: 1148 Location: London, UK
Posted: Mon Apr 13, 2009 11:11 am Post subject:
Hi Sarah,
I have been tested for CPn and it has come back negative. (I got it tested in Brussels in a special blood lab and then again in the UK).
I will still do the flagyl as well (just in case)
I am starting to feel better now...I feel I have turned a corner. I can't attribute it all to the abx alone (as I have really worked hard on the supplements and diet) but I def think they are part of the improvement and I daren't stop taking them!!)
Fingers crossed it continues:))
L'hermittes gone, weakness in arms is improving (today they felt more normal) left leg still a bit stiff and I do wake with mild tremors every morning and my feet are still pins and needly (but much milder)
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Mon Apr 13, 2009 11:51 am Post subject:
Testing for Cpn is not a very accurate procedure in any case! I registered as 1:64 so negative as far as many GPs are concerned, yet I reacted straight away to the antibiotics.
Since you are working to a timescale, you might as well do it all!
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 12, 2009 Posts: 1148 Location: London, UK
Posted: Tue Apr 14, 2009 12:34 pm Post subject:
Well I have taken the 2 doses so far of 400mg of metronidazole. Wow it has absolutely floored me! I feel ok just so exhausted, I also have a sore throat (mild) and a bit of a cold like thing and mild muscle pain.
I think one day will be enough with the flagyl for another 3 weeks then I will attempt a couple of days.
My issue is I want to continue to take my other supps and it is so hard to fit them in when you have to do 3 antibiotics in the day.
Did anyone else manage to do the supps alongside the flagyl?
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Tue Apr 14, 2009 4:05 pm Post subject:
Yes, it does have that effect on most people doing this regime!
I did take all the supplements on flagyl days but but I did forego the charcoal which I was at first trying. As you say, no time in the day, but it was only for five days a month.
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 12, 2009 Posts: 1148 Location: London, UK
Posted: Sun Apr 26, 2009 12:52 am Post subject:
Hi All,
Just to give you an update. I am feeling a lot better (more like myself) I still have numbness in the areas previously affected by relapses but my L'hermittes has gone and I no longer get major tingling when I walk (It is still there mildly but definately is not as prominent)
I am still getting good and bad days/hours but overall I do feel an improvement.
I have only done the Flagyl for one day so far about 2 weeks ago and I did have a very flu/cold like strong reaction to it. In about a week/2 weeks time I will attempt 2 days.
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Mon Apr 27, 2009 9:01 am Post subject:
Having good and bad days/hours is realism and I wish a few more people knew of its existence. No major tingling when you walk, though, is good!......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 12, 2009 Posts: 1148 Location: London, UK
Posted: Sat May 09, 2009 10:29 am Post subject:
Hi all,
I have just done 2 days of flagyl (I was feeling not so great just before starting it, weakness issues and more visual probs)
For those 2 days I felt much worse but am starting to feel slightly better now. Day one I did 3 x 400mg and day 2 I only managed 2 x 400mg tabs (obviously separated throughout day)
Nothing else to report really....I am still having up and down days but seem to be stable.
I read that antibiotics lower vitamin K levels and vit K clots the blood so it seems abx also act as blood thinners...
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Sat May 09, 2009 11:25 am Post subject:
Well done!
You're right about antibiotics and vitamin K. I have naturally thin blood so I take a bit of vitamin K even now but when I was taking abx, nearly every day. Strangely enough though, before starting this I used to have lots of nosebleeds, but not any more. If I cut myself, though, I bleed profusely: I always have done, even as a child.
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 12, 2009 Posts: 1148 Location: London, UK
Posted: Wed May 13, 2009 3:01 am Post subject: Update
I have been feeling a lot better over the past 2 days.
My L'hermittes is non-existant now and the pins and needles/vibrations in feet and legs are now only slightly there. When I am walking I am not getting the tingling now that I was experiencing before when I stopped walking.
My fatigue also seems to have diminshed.
Now I could be in a natural remission....and the vitamins/minerals I am taking could be helping but I was in a bad way when I started the abx and don't feel like I am on that downward slope at the moment.
I have noticed one side affect from the abx that I might need to address soon and that is hairloss, I am losing my hair more then I would normally but as yet it is not noticable. I am taking azithromycin and the doxy daily as I seem to feel better on the azithromycin. If this continues I may go back to the prescribed azithro 3 times a week.
I am having my liver and kidney levels checked this week so we will see if anything shows up. (my liver enzymes have always been raised in the past before starting abx) I am also going to get my D and zinc levels checked.
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Wed May 13, 2009 5:11 am Post subject:
Ah, hairloss! It happened to us all at first but soon rights itself and more. Wait and see, but I'm sure that Mack will come along and say the same thing. Both she and I have long hair that we seemed to be losing at an alarming rate but now it is full and healthy. When it starts growing back you will find lots of short hairs trying to catch up.
I never had my liver and kidney levels checked for the reason that it would be obvious to DW that I had liver trouble just by looking at my skin, but slightly high enzyme levels don't matter and will again right themselves. In my rather severe disease case it was better to carry on with the abx.
All in all you seem to be doing very well!
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: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Wed May 13, 2009 12:09 pm Post subject:
Oh, my gosh! Hair loss! It was really the scariest period of doing the protocol (for me, at least). My hair was midway down my back and suddenly people were 'preening' me, pulling all this hair off my shoulders and coat, peeling my hair off their car seats, finding my hair on bathroom floors... The hairbrush was always full of hair and I was clearing the drain strainer every other day. I know I panicked, and actually it was Sarah who calmed me, telling me about her hair loss experiences.
For me, it went on for some three to four months and I felt lucky I have such a great volume of hair that the loss wasn't noticeable. It began to grow back all at once and I could stick my fingers into my hair, near the scalp, and feel this whole new crop of half-inch long hair bristling out of my head. Weird, but very cool, all at the same time. The loss stopped all at once and my hair grew in stronger and more elastic, plus it grows about half an inch every three weeks now, rather than half an inch a month, as it used to.
It'll pass. We figure there must be a lot of cpn infection in hair follicles. _________________ 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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