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Posted: Tue Apr 14, 2009 2:05 pm
by SarahLonglands
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
Posted: Mon Apr 27, 2009 7:01 am
by SarahLonglands
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

Posted: Mon Apr 27, 2009 7:10 am
by mrhodes40
Yeah good for you!
Posted: Sat May 09, 2009 9:25 am
by SarahLonglands
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
Posted: Wed May 13, 2009 3:11 am
by SarahLonglands
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
Posted: Wed May 13, 2009 10:09 am
by MacKintosh
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.
Posted: Wed May 13, 2009 10:26 am
by SarahLonglands
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
Posted: Tue May 19, 2009 6:59 am
by notasperfectasyou
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.
Ken
Posted: Tue May 19, 2009 10:49 am
by SarahLonglands
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:
http://www.davidwheldon.co.uk/chl_vasc.html
Sarah
Posted: Wed Jun 03, 2009 5:38 am
by SarahLonglands
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
Posted: Fri Jun 26, 2009 3:17 pm
by LR1234
.......
Posted: Sun Jun 28, 2009 9:42 am
by SarahLonglands
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
Posted: Tue Jul 07, 2009 12:31 pm
by LR1234
.......
Posted: Thu Jul 09, 2009 6:25 am
by SarahLonglands
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
Posted: Sat Jul 18, 2009 4:14 am
by SarahLonglands
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