Improved 25-Foot Walks on Antibiotics

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Is the sustained increase in walk speed meaningful in assessing how the Combined Antibiotic Protocol has benefited Kim?

Yes
6
67%
No
2
22%
Maybe, I will post why I feel this way
0
No votes
None of the Above, I will post my thoughts on this
1
11%
 
Total votes : 9

Improved 25-Foot Walks on Antibiotics

Postby notasperfectasyou » Tue Aug 11, 2009 7:59 pm

Improved 25-Foot Walks on Antibiotics

Chart of Kim's 25-Foot Walk Times

Here is a most recent chart of Kim's 25-Foot Walks. The chart is clickable. So if you click on it, a new window should open that has a larger version of the chart that you can actually read.

Image

While the chart reflects significant improvements over the first 6-months of ABX protocol, it is notable how Kim's walks are still improving as we go and that she is closing in on 4 seconds. For those of you who don't have MS, I'd invite you to measure out a 25-Foot course and see how much moving is actually involved in a 4.5 second walk.

Where, When and WOW!

We videorecord nearly all the walks in our kitchen, unless we were traveling. We have measured out the 25-Foot course with a tape that's on the floor between two floor mats. Below are the dates and times of the walks. One very cool idea that was suggested to me; open two windows and watch comparative walks together.

Links to video are blue.

Walk Date ______ Seconds

12/20/07 ________ 20.24 (1st appt. at Vanderbilt. Received Scripts for ABX)
02/17/08 ________ 10.53
02/25/08 _________ 9.63
03/03/08 ________ 10.91 (1st video of Kim walking on YouTube)
03/09/08 ________ 16.75
03/16/08 _________ 9.46
03/22/08 _________ 8.59
03/30/08 _________ 8.06
04/06/08 _________ 9.34 (2nd video of Kim walking on YouTube)
04/11/08 _________ 7.81
04/20/08 ________ 10.81
04/27/08 ________ 12.28
05/04/08 _________ 8.97
05/11/08 _________ 7.81 (3rd video of Kim walking on YouTube)
05/19/08 _________ 6.60
05/31/08 _________ 6.50
06/08/08 _________ 5.78
06/15/08 _________ 6.03
06/22/08 _________ 6.16 (4th video of Kim walking on YouTube)
06/30/08 _________ 6.06
07/13/08 _________ 7.72
07/19/08 _________ 5.19
07/26/08 _________ 5.53
08/03/08 _________ 4.72
08/10/08 _________ 5.35
08/17/08 _________ 5.50 (5th video of Kim walking on YouTube)
08/24/08 _________ 4.91
08/31/08 _________ 4.84
09/07/08 _________ 4.62
09/14/08 _________ 5.06
09/28/08 _________ 4.78
10/07/08 _________ 6.03
10/12/08 _________ 4.88
10/22/08 _________ 5.13
10/26/08 _________ 5.10
11/02/08 _________ 5.16 (6th video of Kim walking on YouTube)
11/09/08 _________ 5.08
11/16/08 _________ 5.25
11/23/08 _________ 5.40
12/07/08 _________ 5.03
12/22/08 _________ 5.09
12/29/08 _________ 4.97
01/04/09 _________ 4.50
01/11/09 _________ 5.00
01/19/09 _________ 5.53
02/08/09 _________ 4.91
02/22/09 _________ 4.75
02/27/09 _________ 5.00 (7th video of Kim walking on YouTube)
03/29/09 _________ 5.22
04/05/09 _________ 5.03
04/25/09 _________ 4.69
05/03/09 _________ 4.66
05/18/09 _________ 4.28
05/25/09 _________ 4.72
06/07/09 _________ 4.36
06/14/09 _________ 4.41
07/13/09 _________ 4.57 (8th video of Kim walking on YouTube)
07/27/09 _________ 4.31
08/16/09 _________ 4.81
08/21/09 _________ 4.34
08/28/09 _________ 4.94
09/11/09 _________ 4.63
09/27/09 _________ 4.84
10/08/09 _________ 4.31
11/01/09 _________ 4.44 (9th video of Kim walking on YouTube) NEW
12/12/09 _________ 4.64
01/09/10 _________ 4.31

I do not have video of the very first walk in December 2007. The idea of doing a regular video of a 25-Foot Walk was suggested to me during February 2008. I will update this post as new videos are added.

Observations

Someone is going to want to know why the first walk is 18 months ago and I'm only getting around to posting it now. We did not know what was going to happen when Kim started ABX and we certainly didn't set out with the intention of posting video on the internet. I think folks ought to have some support for the arguments they make about off-label MS therapies. In my thinking, feeling better the next day is great, but that's not sustained improvement. We have a ways to go, but I think that 18 months of data is a good indicator.

Combined Antibiotic Protocol is working for Kim. It doesn't work for everyone. If it did, everyone would be doing it. But, it's inexpensive, needle-free and has helped some reverse the progression of their disability.

Yes, 25-Foot Walks Matter. What's Fampridine?

It is a big deal to increase your 25-Foot Walk speed. There is a company, Acorda that is in Phase III trails with an oral drug called Fampridine. When this pill is approved it's widely expected that a lot of folks with MS will be taking it. Here's a pretty good article about how Fampridine improves walking ability for some with Multiple Sclerosis.

Acorda's Fampridine trial has two significant outcomes:

35% of Fampridine recipients had improved walk speed.
8% of placebo recipients had improved walk speed.

25.2% average increase in speed in the Fampridine responsive group.
4.7% average increase in speed in the placebo responsive group.

These results are based on a 14 week trial period. I think it is great that 35% of the participants could walk about 25.2% faster. I also think it's interesting that someone in the placebo group was able to walk almost 9% faster. I think that's important, because if ABX was doing nothing, and Kim was trying really, really hard, we'd expect that she might be able to walk about 9% faster after 14 weeks.

After 14 weeks on Combined Antibiotic Protocol Kim's 25-Foot Walk time went from 20.24 seconds to 8.06 seconds. That's a 150% improvement in speed (1.24 ft/sec to 3.10 ft/sec). The kicker is that she's still improving. I'm not saying this to disparage Fampridine. Kim may very well end up taking Fampridine, but I am trying to show that the Combined Antibiotic Protocol has had an impact on Kim's walking that more than rivals the effect of an important MS drug that is being trialled entirely on it's impact on the 25-Foot Walk.

It's Not Just About Walking

We all know that it's not just about walking faster, but it's a component of the issue. We've kept track of other improvements Kim has experienced too and I'd be happy to discuss them if you are interested in knowing more about the Combined Antibiotic Protocol. Ken
Last edited by notasperfectasyou on Fri Jan 15, 2010 3:55 pm, edited 15 times in total.
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Re: Improved 25-Foot Walks on Antibiotics

Postby Bubba » Wed Aug 12, 2009 6:32 pm

notasperfectasyou wrote: We all know that it's not just about walking faster, but it's a component of the issue.


Thats AWESOME Bro! Your right. It's not about the walk time, it's about the positive news! I am one of those whacky peeps who believe.... I've said it before, I'll say it again... Positive thoughts and affirmations draw positive energy. That is definately a positive moment in time for her. I look at it like a football game, youu can tell whos gonna win by wich team has the momentum; and that can change in any quarter. Right now she has awesome momentum going based on her results, and that means alot! Just encourage her to keep "Pushing"!!!! That is VERY GOOD news!! :D
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Postby Cleremond2000 » Thu Aug 13, 2009 9:56 am

If you are improving on Antibiotics, its a good bet that all of your MS related issues have a systemic bacterial infection at their root, such as Lyme Disease and its co-infections.
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Postby robbie » Thu Aug 13, 2009 11:18 am

If you are improving on Antibiotics, its a good bet that all of your MS related issues have a systemic bacterial infection at their root, such as Lyme Disease and its co-infections.
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Re: Improved 25-Foot Walks on Antibiotics

Postby notasperfectasyou » Thu Aug 13, 2009 12:34 pm

Bubba wrote:
notasperfectasyou wrote: We all know that it's not just about walking faster, but it's a component of the issue.


Thats AWESOME Bro! Your right. It's not about the walk time, it's about the positive news! I am one of those whacky peeps who believe.... I've said it before, I'll say it again... Positive thoughts and affirmations draw positive energy. That is definately a positive moment in time for her. I look at it like a football game, youu can tell whos gonna win by wich team has the momentum; and that can change in any quarter. Right now she has awesome momentum going based on her results, and that means alot! Just encourage her to keep "Pushing"!!!! That is VERY GOOD news!! :D


Thanks Bubba. It is partially about walk time, but yes, it's much more than that. I wanted to make it clear with the close about Fampridine - that this is important enough, should be as important as Fampridine. I don't know that folks have a good frame of reference for that the 25-foot walk since it's not an MRI or an EDSS score. But, yet we all know what it is. I also realize that it will be clearer next week when I get a second video up. Ken
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Second Walk Video Has Been Posted

Postby notasperfectasyou » Tue Aug 18, 2009 8:50 am

I have linked in a second comparative video! Ken
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Postby SarahLonglands » Tue Aug 18, 2009 11:37 am

Cleremond, of course Kim's MS has an infectious cause. Everyone's does, look at Lyon's Faroe Island post, although he might disagree and look at any info you can find on Faroe and MS.

Kim is treating her MS as a chlamydia pneumoniae infection, as did I. She went to Vanderbilt University to see Ram Sriram, professor in experimental neurology, and I was treated in England by Dr David Wheldon, a microbiologist and my husband.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby notasperfectasyou » Tue Aug 25, 2009 7:51 am

I have linked the 3rd video.

Kim is about 38% faster in the 3rd video than in the 1st video.

So, Here's my Huge Question (are you out there Lyon 8O ).....

If antibiotics had nothing to do with Kim's walk imrprovements and we know that the best anyone on placebo in the Fampridine trial could do was about 10% faster, what's improving Kim's walking?

Ken
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Postby Lyon » Tue Aug 25, 2009 12:25 pm

.
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Postby notasperfectasyou » Fri Aug 28, 2009 9:21 am

Lyon,
I've taken a few days to try and see if my brain can get get a handle on this and I can only speculate that you've made some sort of decision to only pursue things that have made it to the trial stage. Do I have that right?
Ken
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Postby robbie » Fri Aug 28, 2009 9:43 am

what's improving Kim's walking?

Ken i truly hope it's the antibiotics as i am going to give them a try but anywhere in your mind do you think that it's just ms behaving the way it does good, better ,bad,worse and so on and so on
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Postby notasperfectasyou » Fri Aug 28, 2009 10:18 am

Robbie,
We've been here at TIMS a good while, I have thought about this and a lot of other things. I could have posted these walks a year ago. I've waited and wanted to build a solid history.

Here's how I see it. Learn about Fampridine. This is no small blip. They are in phase III and it looks like the stuff is going to get approved. In the trail they compared placebo to Fampridine. The very, very best someone on Placebo improved was 10%. The very, very best someone on Fampridine improved was about 50%. So that's taking the very best outcomes from a large trial. I take it to mean, this was as far as the rubber band could be stretched.

Now, Kim's first 14 weeks (the same period use in the trial) on abx brought her 150% increase in speed. The important comparison to me is with the placebo. Because, if the abx were doing nothing, someone has to explain to me how Kim's walking sped up so much more than the very, very best walk someone on placebo could muster. The effect Kim got and has retained does not coorelate in anyway with placebo.

Robbie, I hope and pray this works for you. You need to know that it doesn't work for eveyone. It is not easy to do and we had some scary momments in the early going. Belief was way more important than we could have imagined. Kim had a brand new exaserbation every year or two for 2 decades and now she's gone 27 months without an attack. Are you on NAC yet? Ken
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Postby Lyon » Fri Aug 28, 2009 3:49 pm

oo
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Postby robbie » Sat Aug 29, 2009 1:46 pm

Robbie, I hope and pray this works for you.

thanks Ken, i hope the antibiotics help some how maybe i will be one of those who they work for. i want out of this chair so bad it hurts.
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Postby Sharon » Sat Aug 29, 2009 2:48 pm

Robbie - here's hoping the antibiotics work for you. It is about time for your MS to give you a break.

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