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Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Wed May 13, 2009 12:26 pm Post subject:
Oh yes, I forgot to mention about the speed of growth: I have decided to grow out my fringe because of it since I needed to either go to the hairdressers too often or attempt to cut it myself!
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.
Last edited by Anecdote on Tue May 19, 2009 5:18 am; edited 1 time in total
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Tue May 19, 2009 8:59 am Post subject:
LR1234 wrote:
Well I have taken the 2 doses so far of 400mg of metronidazole. Wow it has absolutely floored me!
It's great to see Sarah here, HI Sarah!
While I am on ABX vacation for a little while, I did want to share my thoughts about this. These are just thoughts, Sarah and others here are way smarter than me.
1) If you are getting Flagyl "beatdown", it's killing something. Maybe not CPn, but maybe it is CPn. But, it's killing something that don't belong in your body and, isn't that a great thing?
2) You can help your self feel better with Ibuprofen (take with meals a few hours away from vitamin D3), Tums, Glucose, Nori (really helps the stomach, get the flavored olive oil one if you can find it)
3) Take charcoal at night, at least 2 hours apart from all the other stuff you're taking. Kim takes 10 caps when she's on Flagyl and 6-8 when she isn't. Caps range from 250 to 280 depending on the brand.
4) Use Pyruvate. Tacking on to thought #1 above, You can make the bacteria killing power of the Azith better if you take 3gm of Pyruvate (OTC sup you can get at the vitamin shop) 30 minutes before you take the Azith.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Tue May 19, 2009 12:49 pm Post subject:
Quote:
It's great to see Sarah here, HI Sarah!
Hi Ken, its good to see you and old Alistair as well!
The problem with number one is that tinidazole would make me weepy even on my last pulse before completing treatment: I don't think I had anything left to kill. You are basically right, though: there is a difference between crying within half an hour of taking the stuff and feeling absolutely dead.
Since both you ad L have been lurking on the new forum, you ought to read this from time to time:
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: 865 Location: London, UK
Posted: Wed Jun 03, 2009 7:26 am Post subject:
Ok tried my 3rd pulse last week...again only managed 1 day...that stuff really effects me. The addition of LDN with the abx actually made me quite sick and vomited all day (even though I had actually only added 0.75ml) I have stuck with it and am feeling much better.
Overal I seem to improving still in terms f how I feel. The hollowness I had in legs hs completely gone and the weakness in arms has gone.
My eyes are also feeling a lot better. (they were quite blurred for a while).
I am still having an issue with hairloss so I got my bloods checked and my liver enzymes are quite high. I have discussed this with my dr and we have decided that I can continue on the regime but maybe just leave the flagyl for a month (I had taken it a couple of days prior to the blood test)
The interesting this is my other abnormal tests (which had been abnormal ever since I got ill 13 years ago) Thyroid antibodies, Billirubin, albumin, inflammatory markers, IGg and IgM levels have all gone back to normal.
My platelet levels have also decreased but I am still within normal levels.
So my update is, I feel much better and even though I have only managed 1 day with the flagyl (2 days on one occasions I react so strongly to it) i always improve afterwards and feel better than I had prior to taking it.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Wed Jun 03, 2009 7:38 am Post subject:
All in all very good, especially about the other tests, but a suggestion: why not try tinidazole in place of metronidzole. It is equally good at its job whilst being a lot gentler on the stomach. I'm not sure if it is available on an NHS prescription, but even if you have to pay privately, it is only five days every three weeks or so.
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: 865 Location: London, UK
Posted: Fri Jun 26, 2009 5:17 pm Post subject:
thanks for the suggestion Sarah, I might try that.
I have only done 3 pulses and I think only for one day properly (I think I managed to do a second day on one of the pulses) I am due to do another pulse soon but I get such a strong reaction with symptoms (not so much the stomach ones but more of the flu and feeling more MS symptoms) that I am dreading it a bit! I hope I can get passed day two with them.
I am doing well though, I still seem to be stable although today I have had some extra numbness issues hopefully they won't turn into anything.
Overal though still doing ok. (I am still on the LDn 1mg as well) Sometimes I only manage 100mg of Doxy I hope that won't mess things up. I will try and make sure I get both doses!
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Sun Jun 28, 2009 11:42 am Post subject:
No, you won't mess things up by only managing 100 mg of doxy some days. Now, if it was below 50 mg, tat might be a different matter, because you would be getting into subclinical areas. Better to take 100 mg than to forget to take anything!
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: 865 Location: London, UK
Posted: Tue Jul 07, 2009 2:31 pm Post subject:
Well, on second day of flagyl and ended up vomiting again! I think I will have to change to the milder abx or lower the dose. I am attempting the 400mg tabs which are abviously too strong for me.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Thu Jul 09, 2009 8:25 am Post subject:
Oh dear, that is the trouble with the stuff. I only vomited a couple of times but never did when I changed to tinidazole. Its a newer generation nitroimidazole so I guess they have ironed out a few creases in the original.
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: 865 Location: London, UK
Posted: Tue Jul 14, 2009 5:29 am Post subject:
Hi,
I am stopping the abx for a couple of weeks as my liver enzymes are very raised (I did have raised liver enzymes before stating the abx but now they are very very high).
I do feel better on the abx and am nervous about having to stop them for a while. If/when my liver enzymes return to normal I may just go back on the abx 100mg doxy as opposed to 200 to see if that relieves some of the stress on my liver.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Sat Jul 18, 2009 6:14 am Post subject:
When my GP half heartedly agreed to prescribe, she wanted regular liver enzyme tests. David said he would take care of that, it being the lab next door. So he gave me the option: have them tested regularly and risk having to stop abx or leave it and start worrying if you look jaundiced. I opted for the latter. The enzymes might at some point been slightly raised but I never turned yellow and now my liver couldn't be healthier and neither could I part from a few remaining MS deficits from years back.
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: 865 Location: London, UK
Posted: Wed Jul 22, 2009 9:15 am Post subject:
symptoms are starting to creep back...getting stiffness and some weakness issues again. Feel like I need to get back on the abx but waiting for liver enzymes to lower.....hope they won't take too long.
Sarah could you ask David if mycoplasma can be treated by the Wheldon protocol? I have tested positive twice for that bacteria.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Wed Jul 22, 2009 10:57 am Post subject:
Yes, I know that without asking! _________________ 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.
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