ABX Log

SarahLonglands · Post by **SarahLonglands** » Mon Mar 23, 2009 7:02 am

It seems to me that you are being very sensible in this: like you, my early relapses were few and far apart, but after about twelve years they started to come much more frequently, several a year with not such complete recovery as a new phase in the disease started. DMDs were by this time becoming available in the UK, but I was already too far gone to qualify.

In 2001 I had an enormous relapse which left me hardly able to walk at all: embarrassing when it came on in the central post office! I recovered somewhat after a few weeks but it was SPMS from then on until David unearthed the Vanderbilt research.

Don't worry about the azithromycin containing some soya: it will be negligible. If this is because of the BBD, you are already breaking it by eating the occasional legume. But then, I have seen people who are strict adherents!

Sarah

SarahLonglands · Post by **SarahLonglands** » Tue Mar 24, 2009 6:09 am

Small world: I live at present in Bedford, about 25 mins north of Luton. David might have taken early retirement from the NHS but he does still see MS patients. He wouldn't prescribe IV rocephin, though.

Out of interest how did your MRI scans look before and after treatment?
My MRI's were always negative even with the progressive numbness over the years but only recently (after the previous year) did the MRI's become positive (including the lesion on my cervical spine) I have about 8 lesions on the brain now too. I plan to have another scan in 6 months to see if anything has changed.

My MRI scans before treatment were frightening: lot of big, hyperintense white lesions surrounding a long dead mass in the periventricular region. This obviously has not changed but the hyperintense lesions have become less intense and a few of the smaller, more recent ones have disappeared.

SarahLonglands · Post by **SarahLonglands** » Thu Mar 26, 2009 7:39 am

If you can stand them both together you can take them like that. I at first was careful to separate everything, until I was told by DW that it wasn't necessary.

Do be careful with the flagyl, though. I actually took five days at full dose first time round and felt nothing. I did wait at least three months, though. Other people have had much more trouble. My worst pulse was my fifth or sixth, though. I was in tears because my bad arm hurt so much, but luckily as soon as I went to bed at night it diminished, only to come back the next morning before I had even got up. It lasted about two weeks.

Sarah

SarahLonglands · Post by **SarahLonglands** » Thu Mar 26, 2009 10:07 am

Oh, I won't say don't do it at three weeks because in the current Vanderbilt trial it is started straight away, but since you aren't in a trial it is probably better for you not to. David started his too early and regretted it.

If you are fine with the doxy in one dose, though, keep at that because it lessens the chance of forgetting to take the second dose.

Sarah

SarahLonglands · Post by **SarahLonglands** » Thu Mar 26, 2009 3:35 pm

I did! Read about it here, from both David's point of view and mine:
http://www.avenues-of-sight.com/Sarahlo ... pages.html

Sarah

MacKintosh · Post by **MacKintosh** » Thu Mar 26, 2009 3:47 pm

Excellent news!

For the record, I started full pulses of flagyl about seven weeks into the protocol. I began azith and doxy together on 06 Oct 2005, then started a full flagyl pulse the day after Thanksgiving. Never had a real problem with any of it. (See, it can be done!)

Three years, six months later, all good. I run and jump with the best of 'em and only have one numb toe and a little numb patch on my hip to recover til I count myself well. Go get 'em!!!!

LR1234 · Post by **LR1234** » Fri Mar 27, 2009 11:56 am

Fingers crossed it works for me.

MacKintosh · Post by **MacKintosh** » Fri Mar 27, 2009 12:00 pm

And toes!

LR1234 · Post by **LR1234** » Fri Mar 27, 2009 2:56 pm

I have noticed a lot of people mentioning taking charcoal whilst doing flagyl. Is this something I should consider taking? If so where do I get it from (I assume my local homebase is not the place to go

SarahLonglands · Post by **SarahLonglands** » Sat Mar 28, 2009 9:49 am

No, nor your local art shop!

Activated charcoal the thing to go for is obtainable from Holland and Barrett amongst other places. It is supposed to help you rid the body of toxins but I found it just made me feel uncomfortably heavy in the pelvic region.

An alternative is yaeyama chlorella. I noticed that you already take spirulina, so you might be able to purchase it from the same place.

Sarah