This Is MS Multiple Sclerosis Community: Knowledge & Support

[Katman]

Gibbledygook- congratulations. People seem to want precise and measurable marks of our progress but they aren't readily available. The most notable thing that I have noticed about the progress that some (at least 4) is that we all walked longer, farther, better, and less haltingly and are more clear-headed than we were whatever number of weeks or months ago. Untill my next MRI those vague but definite improvements will be all that I can do. To me there is no better proof than an MRI either way with the exception of an LP. Maybe it is the designation of your disease- RR or PP or SP- that will define progress when more evidence is in. We are all doing our very best to gather same! Incidentally, I am PP - VERY- in that I was accellerating downward and am now progressing in the other direction. You walked a looooong way!

If I am "beating a dead horse" please don't hesitate to tell me. I am a grown-up.

Rica

[mrhodes40]

Thank you very much Alex and Rica! I'm the one beating the horse, I am sorry about it but thank you so very much for your quantification of your progress. Being able to walk 900 meters in heat and still move normally is a BIG deal, when before you could walk "around 800 meters in an OKish style" I hope my asking for this does not seem faulty but instead protective..There has been a meltdown of sorts among the general discussion thread about abx. It helps others to see something that can be quantified.

I personally have read enough information about it to think it is a good approach scientifically and sound judgement to go ahead and do it empirically. The newest addition to the abx theory is here.

http://www.bostoncure.org:8080/article. ... 29/1140239

Yet another scientist saying bacteria are overlooked as a source of chronic illness. People who do not give credence to this possibility have not studied it thoroughly, IMHO. This is not one or two people, it's a bunch of them all over in various fields. Sarcoidosis, Rheumatoid, Alzheimers to name a few. It is fair though to wonder if a new treatment will cause an exacerbation, so what is written here will tell others about people's experiences with that.
Obviously Ram Sriram, Charles Stratton, David Sheldon, and various other researchers producing evidence of CPn in brains are believers in this approach. There are some in general practice that also findit compelling like my doctor.

But those doing this are pioneers. The first to go ahead into that territory and see how they do. People are anxious for things like numbers that mean something 900 meters means something. The edss scale uses distance to ambulate unaided as the main means of grading your MS. This is a very valid way of quantifying how you do. Interesting that you lost ground during the flagyl pulse to a pseudo flare and have recovered to beyond the normal level. SO during the flagyl flare, you could go 5 meters, much less than normal for you,but then afterwards you could go 900 meters and in a normal gait, much better than before.

Gosh, how many exacerbations of MS have you ever had in your life that after they were over you could go further? I've never had one like that, nor have I heard of it. A steroid can't even do that.
Alex, you just gave us the best anecdotal evidence of pseudo flares there could be.
Marie
p.s I am not offering medical advice. Everyone should talk it over with their doctor as this is a unproven therapy. I'm just making a point. I think I'll make this my signature...

[Melody]

Gosh, how many exacerbations of MS have you ever had in your life that after they were over you could go further? I've never had one be.
Marie
...

Well hubby has as his attack last August was the down side of a few years of me wondering who the old guy was that was now my hubby. You see we did not know he had MS but he couldn't seem to pull it together for a day in the park or a run on the beach or a bike ride or just about anything. We had come in the neighbor hood to tease him and say we would have to bury him in his recliner. Well since we have found out it was MS in Jan 2005 all has changed. We contribute it to diet and possible lipitor(statin) as it was prior to his starting copaxone that the changes took place. the anti biotic regime is possibly good for those that have Chlamydia pneumonia but it seems it shows up more in those attacked the worse. I think as many can be helped by proper nutrition and a good understanding of their own allergies as well as intolerances. What ever works. That's the whole point of this disease it is totally individual.

[gibbledygook]

Here are some other improvements that I hadn't logged in my diary but which seem sort of empirical 1) I can now bend the right big toe on my right leg without having to lift up my leg and flex the knee since I can bend the toe whilst lying down with my leg flat. I haven't done that for ages and ages (sorry no dates available) although I could manage if I bent the knee. 2) I can hop on my right leg using more of the toe area/ball of foot area and without supoort, previously I needed a support to hop and it wasn't using the ball of the foot area. In fact I'm not sure that I was technically hopping more defying gravity in some odd way! These may seem utterly daft measurements but I like 'em!

[mrhodes40]

Cool! You can plantar flex your foot and hop on it! Your doctor checks that whe he does his hands on neuro exam. Last time he checked you did he not have you pull up on his hands with your foot and push down with your toe? It is a good observation that you have some recovery there. My doctor even has me try to hop on my foot as part of the exam.

Also, having your toe come back is significant. Just ask an amputee who lost one as he tries ot learn to walk without it. As your leg comes forward in the swing a healthy normal toe pulls up inside the shoe to "clear" the ground so you do not trip. If your toe is able to move now, remember to use it like you use the toe on the other side...remember to pull it up as you bring your leg forward. Since the nerve woke up it won;t know wha tot do with itself and you are likely to have it stay "dumb" if you don;t reeducate it.

I saw the Congressional hearings on stem cells there were two young US women there who'd had stem cell transplants in other countries and were here rehabbing. One of the things they commented on was that there is not a good rehab program all laid out already to get people's new nerves functional again. They had to kind of make it up as they went. Well, a nerve that is gone for a long time and is now able to function again will take some work to get it to work well again. Are there any physical therapsits on here who'd care to comment?
Marie

[gibbledygook]

It is now 10 days since my 6th 5 day pulse of flagyl. I have noticed a slight flare up in stiffness and foot burn since starting and finishing this pulse. BUT I just walked a minimum of THREE kilometers in about 90% humidity. The length may have been closer to 4km but I am not one hundred per cent certain of the route I took and the accuracy of the scale (I was in Henley on Thames and walked from the Compleat Angler over the bridge and all the way up the high street and then walked all the way back). After the first leg of circa 1.5 km I did use my partner's arm for balance and reassurance but when I got back to the place we had started from I made it independently to the toilet with only a moderate limp.
It was an almost unbearably humid day in Henley on Thames. I was last able to do these sort of distances around a year ago or maybe longer.

[Katman]

Just had to say how wonderful it is that you can do so much more than before. Sometimes I suspect that only someone who has "been there" and is coming back can really appreciate this. Also I have a sneaking growing awareness that our energy level is rising right alongside our physical abilities
A lot of patience is required but we are getting there.

Rica

[LifeontheIce]

Gibbledygook, I think that it is probably a pseudo-exacerbation you are going through. Hopefully it will pass soon. I am impressed with your endurance and determination to get stronger. All the best wishes.

[Anecdote]

Alex, that is a GOOD three kilometres, so it probably is nearer four. You have to remember that what looks like 1 km on the map, if you are also going up and down, effectively is longer. And it certainly was jolly humid last week! (I know from my exploits on Dunstable Down)

Sarah

[mrhodes40]

Wow! This is very very cool.. A mere month ago you hoped you were not putting anyone off abx and specualted that your high lesions load in the spine was at fault. Goodness! And now look at this! Boy, I'm 10 months behind you . I can't wait until I get there.

Are you now doing all 5 day flagyl's? And the big pulse was scary, but did turn around and resulted in tremendous gain. Tell me are you now feeling less worried than you did earlier about using flagyl? There's been a temendous amount of concern on the board by others about the flare up of symptoms at the flagyl time, but I think your record here makes an extremely good case for David's pseudoexacerbation theory.

I say again, exacerbations (I do not mean remissions) do not cause an increase in capabilities and function after they are over. Ever. You have provided a good picture of how it feels to be on this treatment. Thank you so very much for your wonderful input
Marie

[gibbledygook]

Hi,

I am not nearly as scared as I was by flagyl now. My leg feels SO much stronger now. I see from my above entry that I meant to say I was in a place called Marlow not Henly upon Thames. Anyway I took the 3 km measurement from an online street map of Marlow and I'm hoping somebody would be able to corroborate the distance. Incidentally Marlow is a really charming place on the Thames. If I can walk (not very elegantly to be sure) 3 km in high humidity then something dramatic has occured despite the AWFUL "relapse" I had in July. So the fear of flagyl has metamorphosed into something more like fascination. Indeed I'm kind of half-wondering whether I should try another long 12 day pulse of flagyl just to see what happens!! mmmm

Here's some more empirical evidence for my improvement. Ahem, this is slighly embarrassing as it shows what an alcoholic culture I inhabit. In July on a hottish day I had 3 pints of stella (5%) and I then managed about 25 meters very badly and was given a piggy-back home! Yesterday and the day before at the Oval cricket ground in London I managed 4 pints of fosters (3%?) with NO discernible difficulty in walking!

[gibbledygook]

I was in Amsterdam on Friday and walked at least 6km throughout the course of the day, not including the time spent in the Rijksmuseum. The average length I managed independently before needing to sit down was just over a kilometer.
I'm going to try another long pulse of flagyl to see if the same worsening and subsequent improvement happens.

[mrhodes40]

Oh Lord! My goodness! Oh. I am SOOOO happy for you! And for me because I am doing it too. Oh my. I almost feel like crying! I am crying! Dare I hope? Ohh, I dare. Yes, I dare. Oh my I'm glad you shared this. This is a magical story. I am so glad for you! 6KM? Wow! that's like...4 miles?

I am sooo very happy for you Katman!

Marie

[Katman]

Marie, I, too, feel like crying. I might do it if I weren't so spacey on Flagyl. Gibblydegook, I feel like cheering. Our small group is growing very slowly. If we have to grit our teeth and claw our way through our 5 day sentence so be it. Actually, I had to skip my evening dose (3rd of the day) because I was so dizzy and weird. I would not have been able to get to the barn and feed our 4-legged family. R. (husband) always says he will do it and he will but that is too much. I simply can't tolerate 400mg.- can barely do 375. What the heck, I can be a zombie for a few days. Anyway, it is an unbelievable thrill to hear of others responding.

Marie, your postings were fervent and clear and very informative. Thank you!

We need a name for our group. All you creative, imaginative people out there can come up with something befitting our .....courageous tenacity. We are getting to be an impressive number. I think there are several in the wings who have seen the light or exhausted other avenues.

Rica

[gibbledygook]

I'm on day 9 of my 7th pulse of flagyl. Yesterday and today are the first days of renewed neurological deficit flares although the symptoms are much milder than when I last did a long session on flagyl (12 days in june or july). I have renewed but mild left foot burn and mild to moderate stiffness when first standing up. I continue to be able to walk around a kilometer before needing to sit down.

The nasty night spasms which have been with me consistently since December 2004 are beginning to seem rather weak and patchy. I no longer regularly take 8mg - 12mg of zanaflex a night but now more regularly take 4mg - 8mg. Sometimes I take none at all and that is without substituting zanaflex with alcohol. And still I don't get spasms. However the first night back on this course of flagyl I did need 12 mg.

I only needed 2 paracetemol last night on my Beta-interferon injection night. Usually I need 6 and wake up in the middle of the night to go to the toilet and take the paracetemol. I slept all the way through the night from midnight till 6:30, helped wake up my hard-working partner, and promptly went straight back to sleep with no toilet or paracetemol requirements until 10am.

I read somewhere that only 7% of people with MS with persistent neurological deficits of over 2 years' duration ever recover the lost function. I have now had persistent symptoms for well over 2 years. Nevertheless they do seem to be slowly getting back to something approaching normal. It feels a bit like I'm going 2 steps forward and 1 and a half steps back when I consume the flagyl. My partner is frankly astonished. We're talking about trying for children next year! In june or july when I couldn't walk more than a few meters my partner talked of stopping work to look after me and now I'm considering looking after small people! It's a complete reversal in fortune.