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Joined: Feb 12, 2009 Posts: 865 Location: London, UK
Posted: Sun Mar 22, 2009 4:21 pm Post subject: LR1234 ABX Log
I have started the Wheldon regime and plan to do it for one year.
I have RRMS (had it for 13 years, dx Jan 09) I am an EDSS of 1.5 (my guess)
Over the years I have had mainly loss of sensation/numbness which has progressively got worse plus fatigue.
Recently a new lesion on my cervical spine has left me with some weakness and pins and needles in feet and hands and L'hermittes and a few new lesions have formed on my brain which were not there a few months ago. I also get mini tremors and vibrating. I recently had a bad attack which caused me to lose a lot of sensation in feet and ankles but a healthy dose of steroids seems to have reversed most of that.
Over the years my relapses have been at a max of one a year, the last year however I had 4 relapses that were more severe suggesting a change in the disease (I blame going off diet, stress and the flu for the change).
I have taken my first dose of Doxycyline today 100mg. I have also been taking NAC for the past month 2000mg daily.
Other supps: Vitamin D 4000iu, Vitamin C 2g, Enzymes with meals, probiotics, zinc 30mg, Lifestream spirulina 12 tabs a day, L-tyrosine 500mg, Taurine 500mg, sublingual B12 1 multivitamin. I make sure I get my omega 3's and 6's etc
I follow the BBD (with some minor alterations, I occasionally eat legumes, not soya) plus I try to keep to 15grms of saturated fat according to Swank.
I plan to also take LDN when I find a dr willing to prescribe and plan to get my liver checked monthly or once every couple of months as I have liver enzymes already slightly elevated and high bilirubin levels.
I have tried to source antibiotics that are lactose free and have managed to get the doxy and metronidazole lactose free but the azithromycin contains some lactose in the capsule.
I have never been on a DMD before and want to see how the combo of LDN and ABX goes for 1 year. If lesions continue to form I plan to go on copaxone or LDN and try antivirals alongside one of them.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Mon Mar 23, 2009 9:02 am Post subject:
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 _________________ 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: Mon Mar 23, 2009 10:39 am Post subject:
Thanks Sarah:)
I have always been dairy and wheat free but have noticed when I do not stick to the dairy free part I get symptoms/relapses. I added the legumes and BBD just to be on the safe side (if there is a "safe side"!) but I don't think I really react to them apart from the soya. Dairy and chocolate are my main problem!
I have never had a remission from the sensory problems, everytime I had a strong attack of numbness ( an 8 on a scale of 1-10)and it subsided it has always left me with loss of sensation (2/3) which has never gone. I have loss of sensation in so many areas of my body.
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.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Tue Mar 24, 2009 8:09 am Post subject:
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.
Quote:
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. _________________ 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 Mar 25, 2009 1:18 pm Post subject:
Nothing to report so far with the abx. I have always found that I am able to digest abx without probs like sickness or stomach issues.
I have gone up to the 200mg of Doxy.
Am I supposed to separate the doses of 100mg? or can I have them at the same time?
I plan to start the Flagyl in 3 weeks time. When I take the 400mg 3 times a day do I stop the azithromycin and the Doxy or do I take the doxy and the azith still?
I plan to do one day only with the flagyl but if I don't have a reaction to it I might see if I can do 3 days....I suppose I will see how it goes.
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Thu Mar 26, 2009 9:39 am Post subject:
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 _________________ 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: Thu Mar 26, 2009 9:58 am Post subject:
Thanks Sarah, I will proceed with caution then. maybe one day at 400mg 3 times a day (I was only given a 400mg rx). Do you reckon 3 weeks is too early to take them then?
I seem to be ok with the doxy at 200mg in one dose but if its better to separate them then I will do that.
I might not take the azithromycin on the same day as the flagyl.
I want to be careful not too overload my stomach. The azithromycin has to be taken 1 hour before food (according to the directions) so that one is probably quite harsh on my tummy. The doxy I can take with food and I think the Flagyl is ok with food too. I will just have to eat lots of meals on the flagyl days!!!
I only plan to do the abx for a year then re-evaluate, so we will see what happens
Joined: Jun 18, 2004 Posts: 1707 Location: Bedfordshire UK
Posted: Thu Mar 26, 2009 12:07 pm Post subject:
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 _________________ 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.
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: 402 Location: Chicago area
Posted: Thu Mar 26, 2009 5:47 pm Post subject:
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!!!! _________________ 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: Sep 25, 2005 Posts: 402 Location: Chicago area
Posted: Fri Mar 27, 2009 2:00 pm Post subject:
And toes! _________________ 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: 865 Location: London, UK
Posted: Fri Mar 27, 2009 4:56 pm Post subject:
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
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