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whyRwehere wrote:I love to read how people are getting on, even though some of the details are a bit too detailed for me...
Keep writing....

Thanks for posting. With this protocol the key lies within the details. Please let me know what you didn't understand and I will try to elaborate. I know that I'm not good at elaborating details, but I very much desire to make this clear for everyone and anyone. This is the purpose of this thread, please help make it successful. Thank you, Ken

We just got back from Kim’s first checkup appointment with Dr. Sriram. We had a family visit along the way and we also decided that we would not drive straight to Nashville in one day again. This trip we had the boys with us and we opted to try to make it as vacation-like as possible. I will get to the appointment soon, but first …..

Llama Love

If you have kids and you’re passing through Roanoke on I-81, you gotta visit the Virginia Safari Park. Having a llama stick its head all the way in your car is topped only by how it freaks out your kids. Buy four buckets of food and take a videorecorder. This was soooooooo totally fun. Car is now filthy.

Pancake Pantry

We waited in a line out the door and onto the sidewalk, 30 minutes on a Monday morning before our appointment with Dr. Sriram. It’s just a few blocks from the Vanderbilt MS Center. The Pancake Pantry’s line moved fast and was worth the wait. Next time we’ll get there a little earlier. We got lost on the way there and only had about 30 minutes to eat. But it was worth it.

Improvement

The appointment was faster this time. Kim had a record walk as measured by the nurse, 5.5 seconds! We got her time from their files of the December walk, 20.24 seconds. When we met with Dr. Sriram he appeared puzzled. He kept flipping back and forth through Kim’s file like he was searching for the one thing that Kim was doing different. I asked him how his study was going. He seemed apprehensive, maybe quizzical. I got the impression that he questions whether the study is going to yield defining results. He said something like, “it would be hard to believe if I had not seen it myself, and even then I don’t know that I believe it” (please note, I don’t have this as an exact quote – it’s more like the feeling I got that I remember). We were very clear that Kim was getting better and that we wanted to continue the treatment. I asked him if he thought “subset” was the key word. He said that it doesn’t seem to work for everyone. But then, he said that his trial was designed before folks were using pyruvate and he also said that the trial is weighted toward more progressive participants. I don’t remember him saying this, but I some how got the impression that he doesn’t use NAC in the protocol. I felt reminded of the burden he bears and the courage it takes to stand tall before those who would mock you.

Clearly there are others in his care getting results like Kim, but it doesn’t sound like it’s everyone. Maybe not even a majority. But as I see it anything greater then zero is an improvement.

He had seen the videos of Kim’s walks and we gave him a second disk of walks. He wanted to see the chart that I had made and I told him that, as best as I could, I compared Kim’s walks with the Fampridine results and showed that Kim was doing better than the average in the phase 3 trial. He found this interesting and he chuckled. It’s clear to me that Dr. Sriram knows he has something, but he’s having a heck of a time getting his hands around it. And then there’s the word “subset”. I think there might be something to this. I have to wonder if the ABX penetrates the blood brain barrier equally in everyone, but then again, that would seem to be an obvious question for an MS Researcher. Kim reported the improvements that I have reported in prior posts and in what I take to be a very positive sign, Dr. Sriram wrote Kim new scripts.

Changes

Kim is still taking Rifampin, Azithromycin and Flagyl as before. Her Pyruvate has been increased to 3.0 grams 30 minutes before Azithromycin, from 1.5 grams. Kim also asked about continuing Copaxone and Dr. Sriram said that it didn’t seem to be doing anything for her. Kim was thrilled, no more shots! He also asked about the vitamin D Kim takes and he wrote her a script for 50,000 IU vitamin D she can take once a week. I asked Dr. Sriram about how eating seems to improve Kim’s balance and coordination. He really didn’t have anything to say about that. He also couldn’t comment about N-acetyl Glucosamine. Kim has also posted about her 6-month check up with Dr. Sriram at CPn Help.org. Kim’s next appointment is in January and Dr. Sriram will order an MRI for that one.

Mr. Observant

You might think someone like me doesn’t miss details. But, I do and sometimes they are huge. This past Sunday Kim has had some difficulty walking. We visited the Flight 93 Memorial in Shanksville, PA and didn’t get home until late. But we knew we needed to video her walk over the weekend so we set up the video. Kim did the walk in just over 6 seconds! This didn’t square up with he wobbliness most of the day and I asked her about it, we even did the walk late at night when she is more tired. Kim said, “don’t you know I walk better without shoes?” OMG! I had no idea. How did I not know notice this?

Conversation

I realize that this post might seem like a report. Reports are designed to communicate information in one direction. I don’t want this thread to be a report. I understand that I lay information out like a report, but I have noticed that a lot of folks have clicked this thing open in the past month and I’d love to answer questions as best as I can. I’m also hoping for new ideas as Kim and I are starting to think more about exercise.

Exercise

So this brings us to the current dilemma. If Kim makes a greater effort to exercise during the day, it seems to “cost” her at the end of the day. It’s as if there is a certain deposit of energy each morning and when it’s gone, it’s gone. Kim doesn’t like how exercise seems to impact her ability to get things done in the evening. But then again, one would think that if she did more exercise over a few weeks, she would gain strength and have more energy and power following an investment. Does anyone have experience with this? What do you think? Ken

Good grief, you drove from DC to Nashville in one go? That's further than driving from here to Paris and back in one day, including going through the tunnel twice!

On Subsets

The word has to be used in published papers because what is being done is not yet accepted and not everyone with MS has been tested for CPn, never mind the fact that it is so damned hard to get accurate results.

Most neurologists must think that Sriram is barking mad because they will have been brought up to believe that MS is an auto-immune disease for which at present there is no cure. He will get loads of criticism about what he is doing, even from his own department.

You will have seen on both this site and CPn Help that this isn't an easy treatment, which is why one of the first things to be worked on when Stratton's new lab opens is to make the treatment easier and/or shorter. My guess is that Sriram will have seen many people giving up because they can't stand it, so he obviously has to say it doesn't work for them. In do remember him saying to me once, when I wrote to him about something, that he was sorry I was having such a rough time at the moment. I actually wasn't at all, but he must get many people who do and some of them are going to be called Sarah.

Like me, Kim is having a comparatively easy time and who knows, you might well be correct in your wondering if part of the answer is how easily the antibiotics can pass someone's blood brain barrier. After all, my progression seemed to grind to a halt straight away. This is why I continue to take NAC every day, although I didn't take it at all for about eighteen months. By cracking open the elementary bodies it will arrest any future CPn attack, reasoning that if it got there that easily when I was 24, it could easily do so again. After all, some people in the early work before the use of metronidazole, seemed to have got rid of the infection thoroughly, but it came back.

On food and exercise

If I am hungry, my low blood sugar means I can't do very much and am definitely more wobbly, therefore I eat little and often. The same with exercise: I have an ellipse in my studio and try to do several small bouts on it every day. I find this better than doing one big burst a few times a week and it makes me more useful in the evenings.

Sarah

Ken,
Thank you for being my wings when I have trouble taking flight. I know it to be true that you were sent to us all for a much greater purpose. Folks are now thinking I'm getting mushy! Keep reaching,we are on our way!
BBYU Kim

Kim, I love you and I'm so happy we can do this together!!!

Walking

Kim is sort of stable right now at about 6 seconds. But what is interesting to me is that she seems to walk better during those 6 seconds than she did the preceding hour or the following hour. I think part of it is in how Kim feels very focused when she does the timed walk.

The new exercise is the “Kitchen Lap”. I figure it’s about 50 feet to walk the oval of the kitchen, hallway and living room. So Kim’s now keeping a log of how many laps she does and she’s keeping track of whether she is wearing shoes or using her trekking poles. Kim’s doing about 10 consecutive laps a day and I think a really cool goal would be about 25 to 30 which would then put us on a quarter-mile track. This is new so we’ll see how it goes. No video for now.

Emotional Reversal

We eagerly await and look for reversals of symptoms. But, more subtle, I’ve noticed an emotional reversal. Before, I’d be alert for any sudden indication of an exacerbation. Is Kim having trouble walking today? There was a constant awareness of how Kim was doing, a concern that she might have an attack. Now, I don’t so much feel that sense of edginess. I’m moreso looking for improvements. I’m paying attention to how much Kim’s so much more in touch with her feelings and emotions. I’m paying attention to look for days when she is walking better. I’m paying attention to her improved level of energy. My disposition towards looking for progression has changed to looking for indicators of regression. How about that? Can’t measure it, but it’s clearly a change in my behavior. So rather than being happy that nothing bad happened today, we are happy when something good happens.

Pulse 6

So, I ask Kim around the 4th day, “do you feel any different this pulse? Kim said “no”. Trick question. Then I pointed out that during the first 2 days of the pulse she had decided to redecorate the boy’s bedrooms, moving their furniture all around to new places. If I go back through our history, I’ve previously described Kim as feeling sicker and sicker and drunker and drunker as the pulse continued each new day. So, here Kim is in Pulse 6 and she’s moving furniture. Kim also didn’t have any peeing issues this pulse and before the pulse was over, we were moving our bedroom furniture around too. Kim clearly had more energy this pulse. I should be clear that Kim was impacted with some tiredness and shortness, but not in a severe way.

Mr. Observant (see prior post) has also noticed that Kim didn’t get that “passively dazed” look at all during the pulse. In the past this was what happened to Kim when she got overheated. But she’s also had it towards the end of the pulse or following significant exertion during the pulse. During instances of “passively dazed” look, Kim would also stop talking and in a nutshell I’ve learned that the way to deal with it is to find a cool place for her to rest. This also is wonderful because we’ve been without air conditioning in the bedrooms for 2 months. We’ve been trying to get a geothermal system which requires a long process of study just to get a quote. We finally got the quote and its way outside of the box, so we’re going with a Maytag heat pump. So maybe Kim will do even better once we have nighttime coolness again.

Provigil

Kim ran out of Provigil and didn’t realize that she was completely out. Her Neurologist wants to see her, making an appointment was something of a condition for refilling the script. So I’m taking the day off next month and we will go to see Kim’s local Neurologist together. He doesn’t at all think ABX does anything. I want to handle this appointment in a very high-road professional way. I don’t want to shove ABX at him. We’ve made the appointment to give Kim about 10 days after her 7th pulse is over.

When you have visited your very conservative non-accepting neurologist, what did you find was of interest to him/her and what helped make the appointment less combative than it might have otherwise been?

Ken

Hey Ken!
I am glad you are continuing to see improvements in Kim! When we all met for lunch my impression was that she was very conversational, very "with it"! That's an outsider's observation, having never met her before. When someone is with you all the time that person sees many little things that have improved/changed. But when someone sees you less regularly I think the improvements are more dramatic. She is doing great and so are you!

The local neurologist who I see was definitely against antibiotics also. When I came back from Vanderbilt the first time she was dismissive and even a bit condescending. She stated that "antibiotics and MS" is nothing new and that there are no STUDIES that show effectiveness. I just saw her last week for my follow up appointment to discuss my second appointment at Vanderbilt. She was somewhat more open minded this time. Not a whole lot, but a little less dismissive about it. She still doesn't buy into it (I think because the FDA doesn't say it is ok) but I felt a little crack in her armor!

I think you should go in prepared for the neuro not to believe in this at all because I think that is how they are trained. But also make it clear in no uncertain terms that you two firmly believe in this and will continue. Show him the tape of Kim's walking progress. There is no disputing hard evidence! I told my neuro that there had been enough improvement to warrant continuing for another 6 months. I think because it is not such a long time she was ok with that. Plus when I told her that Dr. S wants an MRI done right before I go back she was into that. She wants to see any changes that have occurred also. Again, I think it is the hard evidence that makes them feel more comfortable.

Good luck with the appointment and good luck with pulse 7!

Lori

Ken -

Having been down this road, perhaps a good tactic to take would be to wait to do any selling/convincing of the conservative local neuro until you have MRI proof. I work in healthcare and have numerous science degrees and I couldn't budge ours with heavy data until he saw the clear MRI proof and then he further was stunned at the physical function improvements.

Kim wasn't doing well on Novantrone if I remember correctly. Remind the doctor of that and perhaps just tell him that since you were running out of options you decided to work with Vanderbilt on their experimental treatment especially since it is so much lower risk than even Novantrone. Perhaps stroke his ego but telling him you very much want to retain a relationship with him since what you are trying is experimental (nice stroke to his ego).

This doctor probably won't even much believe the videos but if he sees improvement in MRI and clear improvement in function upon exam, slowly but surely his brain will probably become a little more open.

Just some ideas...

So I'm not typing up a whole fully thought out post, I wanted to thank both of you for your thoughts. From time to time I need to be reminded to be PC. Funny, I work in WDC and you'd think I was all about being PC. I know how, it's just that I'm by nature....... I recall telling Lori, militant.

I like the genius in Daisy's idea, but ........ you want me to keep myself on a short leash? You are right, I don't want to be patronizing, argumentative or pushy. We want to keep Kim's long established neuro on the team. Honestly, I genuinely respect the guy. I mean, he's got to be exponentionally smarter than me to make it out of med-school as a neurologist. I don't see me going to med school so I can become the Patch Adams of neurology.

I promise to think and try.

The Perfect Storm - It's August Hot, It's August Humid, the boys are at day camp and we have a new puppy. All this means, Kim's mid week in flagyl, doing double pyruvate, walking the puppy every few hours outside in the heat and humidity. It's very tough. Just a few days ago she set a personal record for her 25-foot walk. More on that later.

The good news is we finally replaced the heat pump and we have AC again upstairs!!! I shopped this thing to death and If you need a heat pump I'll share what I came up with.

Ken

added note: Kim remined me that she started the pulse during her period and she is now 5 days without Provigil.

Neurologists of the old school - I agree with Daisy about the MRI even though my ex-neuro wouldn't even look at mine because he hadn't ordered it. He just ran out of the radiologist's room screaming "I can't look at this!" I think maybe some time after he did sneak a look though, because he actually started talking to David in the Medical Institute and for a while seemed quite interested. Well, until he spoke to his campath colleagues at Cambridge anyway. He never risked seeing me again, though. Maybe he had heard tell of my rubber mallet.

Ken, here it must be all-time cool for August, 68 degrees, grey and rainy. We don't need AC at all this year. I think people must grow acclimatised to where they live, though, because if someone has MS here they are still affected by the "heat." Fifteen years ago I wasn't at all, even in the south of France, five years ago I couldn't stand temperatures above ours today, now I crave a bit of heat. Nobody likes humidity, though.

Sarah

Ah, humidity. There's very little on this humidity thing, but this Russell Johnson guy had an interesting observation linking disability to dew point rather then heat. I think this explains why Kim did so well last summer in Arizonia. It was 110 - 115, but zero humidity. Kim does her 7 days pulse the first 7 days of each month. Today is day 5 and she's got puppy patrol again today.

So Sarah, is this why Professional Gardeners in England are so much better than landscapers in the US? I'd love for it to be 68 degrees outside right now. I call that Fall. I'm planning on taking the DVD, a chart and the data in a spreadsheet and giving it to him with as neutral an attitude as possible. Like maybe as if I were returning with a pee cup. I have to recognize that only he can alter his opinion and the best I can do is provide evidence in a noncondesending way. I'm now reading the Kenny Moore book and I need to approach this more like Kenny Moore. I need to ditch the agenda for just 30 or so minutes...........

Ken - You are a gem of a guy!

Wise words from the 7 habits by Stephen Covey, "Seek to Understand before Seeking to be Understood".

Good words for dealing with Kim's regular neuro.

I really feel like ranting like Lewis Black.

But, I also understand that if I'm to help our cause I need to be ........ helping. I've not made it to Stephen, but I like the quote. I stopped reading the Kenny Moore book today on the train home when I realized that it's actually a very insightful book and that I was glossing over genuinely important stuff. So I'm starting over with a pen this time. I write in the really good ones. I have a sense this one is good.

Thank you Daisy. I just need to hold myself together, then again, I have no idea what Kim's gonna do. She just might start slapping him until he agrees that she seems to be doing better. Kim had a good day 5 today. Lucy didn't pee anywhere indoors! Ken

Ken, today is August 7 and this is our five day weather forecast:

http://www.bbc.co.uk/weather/5day.shtml

This might give you an indication of why professional gardeners do better over here, although this is an unusually wet August, like July was last year. Its actually 72 degrees today, but down to 64 tomorrow. I think Russell Johnson is right about the dew point. 1995 was one of the hottest years on record over here. The heatwave started the very day we arrived in France for our honeymoon and lasted well into autumn. Cahors was hot and dry and I thrived, not being so much affected by heat then. Back home, a few weeks later, I was like a limp rag, due to the humidity of our small island.

Sarah

24 DEGREES!!!!
It's Freezing!!!!

I couldn't help it. lol. Ken

Ps: The people trainers come Sunday, Lucy will be soooooo much happier once we're taught to have better behavior.

One person in particular.

PS, what type of dog is Lucy?