In Pursuit of ABX - May I have coffee with my milkshake?

A forum for the discussion of antibiotics as a potential therapy for MS

Postby daisy » Wed Apr 02, 2008 7:01 pm

Ken - You really do an excellent job of documenting your and Kim's journey!

Re the yeast : Step up the probiotics. 200billion a day in mixed strains is not too much. Most people don't take nearly enough in my opinion (when treating with antibiotics - for anything - much less in long term CAP). Probotics do considerable more for your immune system than just prevent yeast and diarrhea.

Re Nashvegas - Grand Old Opry theme park is educational and kid friendly. Not too far from Vandy out I-40 with many nice and reasonably priced hotels nearby.

Daisy
daisy
Family Member
 
Posts: 70
Joined: Wed Jan 24, 2007 4:00 pm
Location: Georgia, USA

Advertisement

Postby Kimscupoftea » Mon Apr 07, 2008 5:58 pm

200 billion a day


that's BILLION, with a "B"????
Just checking.
Ken
User avatar
Kimscupoftea
Newbie
 
Posts: 8
Joined: Fri Mar 11, 2005 4:00 pm

Postby SarahLonglands » Tue Apr 08, 2008 2:22 am

Read the small print, Ken: you don't have to take that many capsules to get up to that amount! 8O

Sarah
Last edited by SarahLonglands on Tue Apr 08, 2008 8:37 am, edited 1 time in total.
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.
SarahLonglands
Family Elder
 
Posts: 2106
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby daisy » Tue Apr 08, 2008 7:06 am

200 Billion is correct. B is correct.

My husband gets

NOW brand "8 Billion" which equals surprisingly 8 Billion probiotics in one capsule is a good one for basic probiotics.

Also - groovy but pricy product called Primadophilus Intensive by Nature's Way. It's a powder packet that contains 100 Billion in mixed flora. Stir it up in your active yogurt cup and consume.

Check out probiotic effects on the immune system ... :D
daisy
Family Member
 
Posts: 70
Joined: Wed Jan 24, 2007 4:00 pm
Location: Georgia, USA

Oh, my.

Postby notasperfectasyou » Tue Apr 08, 2008 11:56 am

Thank you. WOW! BILLION!!!!

The one we have is 100 Million. Maybe need to get a better one.

WOW, Billion with a B. Who knew? Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby g123 » Sun Apr 13, 2008 9:48 am

I'm not on abx (yet...) so i don't need such a large army of probiotics, but I "only" take 250 million, which seemed like a lot until now.

Also, I just read this entire thread. Very helpful, thanks for writing all of this down.
User avatar
g123
Family Member
 
Posts: 46
Joined: Wed Mar 26, 2008 4:00 pm

Getting to Go

Postby notasperfectasyou » Fri May 02, 2008 10:27 am

Getting to Go

Thanks to g123 for asking me about how we got started. This got me to backtrack through this thread and I feel that I could have done a better job of explaining what for us was the first giant hurdle, finding a doctor.

Don’t count on your Neurologist to help you get started on ABX. It’s not part of his/her medical training, experience or comfort zone. Don’t expect your Neurologist to be anything more than politely understanding. Here’s the best analogy I can come up with, which is entirely based on the fact that I’m an accountant. Your friend tells you that he can save you thousands of dollars on your income taxes by making huge donations of clothes to charity. He’s so proud of this that he tells you and other friends he’ll help you save big bucks on your taxes. Some friends try it and, sure enough they save money and the IRS doesn’t show up to ask them about it. This goes on for several years and finally you go into H&R Block and tell them you want to get your tax deduction too; everyone you know is saving thousands of dollars and you want your share. You’re frustrated because you’ve missed the boat for all these years.

Now, obviously, I’ve made this analogy to show the Neurologist’s perspective. Your tax preparer has spent years in school and maybe even a few years passing the CPA exam and then several years in the CPA firm sweatshops just to be able to call themselves an experienced taxpreparer. Now you want them to put all that on the line because you have anecdotal evidence that there’s big bucks to be had writing off charitable donations.

Your Neurologist went to school a very long time, invested time money, energy and long hours of studying to become a medical expert. It’s unreasonable to expect them to separate themselves from all they have done to stick their necks out on a block for something their experience says is unproven and more importantly, not covered by their malpractice insurance. I think it’s good to talk with your Neurologist; you’ll need his/her continued support. But, go in with a low expectation. Don’t expect a script. You want to go in 1) as a courtesy, 2) to find out how to get copies of your medical records, which you might need, 3) to make sure you continue your current meds (CRAB’s) until you’re clear to discontinue them, 4) because you’re still going to need scripts for MRI, 5) the health insurance and disability insurance folks will still need forms from him evey once in a while and 6) because there is no good to be gained in burning a bridge with someone who is there to help you despite the fact that they don’t want to help in the way you wish they would.

So now you can either start without a doctor (not recommended) or with a doctor (recommended). If you want to start without a doctor, I’d recommend rethinking the decision. Mainly because this is hard and you need to have a very strong will to do this. Kim’s very strong willed, but she also derives a lot of support from me and knowing that Dr. Sriram is overseeing her. Having partners, even the folks here at TIMS and at CPn Help is invaluable. Although, you can get the ABX on your own, I’d recommend having a doctor with you. Try your GP or an immunologist. I think it’s like networking for a job. Don’t expect folks to say yes, but ask them if they know at least 2 others who would be willing to talk with you. We considered flying to another city to see a doctor that someone on the protocol had been seeing. It is not easy for doctors to accept this therapy, you need to understand this when you go networking. I’d also highly recommend reading. Read everything you can get your hands on. Stop reading the newspaper. I printed up entire blogs from CPn Help and read them for weeks while riding the tubes to/from work. Stop reading books. Print up and learn to read medical journal articles. I know they are hard to read, but try to learn the language. When you start to panic because you’re having die-off symptoms, knowledge is the thing that’s going to bring you confidence that you’re going to pull through. Knowledge is critically important to have before you start, second only to having a doctor. Knowledge = Confidence when you need it most.

Ultimately, we got fed up with trying to find a doctor. We’d get close and then the process would stop. Then we’d get excited then the doctor would back off. Then someone would tell us they could help and then we wouldn’t hear back from them. I think we could have been more patient and continued to pursue this path, and we just might have ended up on a plane to see a known CPn/ABX friendly doctor, but we got lucky in pursuing an appointment at Vanderbilt, which settled everything. One key item of import is that we needed a referral from Kim’s Neurologist or GP for the appointment. A referral is different than a script and you’re more likely to get one from your doctor. Hopefully as time goes, this therapy will gain wider acceptance and more doctors will be on board with it. I think it’s going to be a great day when Montel Williams says he’s on ABX.

So in summary, this experience has its ups and downs and you get to start feeling them before you’ve even gotten to go. The toughness you need for this isn’t so much about physical endurance. Rather it’s the mental frustrations, uncertainties, and second guessing that make this process hard. Finding a doctor is just the first of many emotional challenges to come.

Chest Pain

On Kim’s third day of her third Flagyl pulse she was feeling a painful tightness in her chest. This was in the morning. She also said that her breathing seemed more labored. She felt better later in the day and was fine the next day. Others have reported that this is a die-off symptom and possibly related to porphyria. Since it’s gone away, we are less concerned. But we are watching it. This might be a good question for Dr. Sriram when we see him in June.

I suppose another good question is whether Kim’s cold was somehow the trigger for the following yeast infection. If so, then how could the yeast infection have been prevented? Should one take more probiotics if they have a cold?

Pseudo-Exacerbation

I had an “I didn’t know that” moment. I learned that the whole “overheating thing” is called Pseudo Exacerbation. But it’s not limited to taking a hot shower. It could be you got sick and your body temperature increased. It could be over exertion in the sun. And now we need to add that it could be caused by CPn die-off.

I realize that it’s still very early in the treatment for Kim. She’s just completed her third Flagyl pulse. Based on the very limited data I have on the first two pulses, Kim’s weekly 25-foot walk has been most impacted the week that follows pulse week. Then in the second week and third week, Kim’s walk gets better. Meaning, I have an expectation that the low point in physical ability is somewhere in the week following Flagyl week and then I expect improvement in the second week.

Following the third pulse, Kim had a tough week the following week. However, the second week was even tougher. This was much unexpected and concerned us. Kim started asking me questions about exacerbation and if it was possible to have an exacerbation while on ABX. Although I am very confident, I did not know the answer to this and I decided to post the question “ Is it possible to have an exacerbation while on the CPn protocol?” at CPn Help.

MacKintosh, Ruthless1, Katman, Michele, Sarah and Jadis, thank you for your replies. The symptoms Kim experienced were very much more like the past decades of exacerbations as opposed to the “overheated” thing. Kim had creeping numbness. This is when Kim can’t feel her legs and the lack of sensation starts working up to her hips. Kim also fell a few times, which has not happened in recent months. For Kim, these first 2 have historically been the primary indicators that it was time to call for Solumedrol. A secondary indicator I pay attention to is what I call (for lack of an official term) “bouncy walk”. Kim has had more bouncy walk recently. This is when she is having less control over her legs and she dips and extends her knees while holding on to walls in an effort to make the next step.

We ran out of time on the Saturday when Kim seemed to be having the hardest time walking and we did not video her 25-foot walk. We did however tape her the next day and she walked the 25-feet in 10.81 seconds. So despite a very hard week that ordinarily would have been a “I’m doing better week”, Kim had a decent walk and we’re feeling good about having wiped out lots of CPn bugs.

We are now starting on Pulse 4. I’ll post notes about it in a few weeks. Ciao, Ken

Ps – is anyone taking Tagamet?
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

post pulse 4

Postby notasperfectasyou » Mon May 12, 2008 12:56 pm

Contact!

Kim and I have been taking the boys to the golf range on occasion for about a year. Typically, Kim has had a lot of difficulty swinging the club in a controlled manner and hitting the ball. At times Kim would take 3 or more swings at the same ball before hitting it.

I told Kim that I wanted to see if we could work a bit more on getting to the golf range this year and see if we could more seriously get the boys introduced to the game. Kim thought this was a good idea and the first three times we went she had difficulty hitting the ball. However, this past weekend Kim had a phenominal time at the range hitting nearly every ball she swung at with the first stroke, CONTACT! Improved eye/hand coordination with ABX?

Our range time was cut short this last weekend so we didn’t get to finish hitting the bucket of balls, but we definitely hope to get out next weekend and see if the improved eye/hand coordination continues.


Supplements Update

I thought it would be a good idea to update this threads listing of Kim’s supplements, since we have made some small modifications.

We found a more compact Turmeric/Curcumin supplement. Kim was taking 8 capsules of the 300 mg Vitamin Shoppe brand each day. When we learned of the availability of a 1,000 mg tablet that gibbledygook was taking (see natural approach forum) we ordered them and transitioned from 8 capsules (2,280 mg total) to 4 tablets (4,000 mg total). Although I have been interested in curcumin for a long time, I’ve not really developed a strong sense of its benefit. But for now, Kim is taking 4,000 mg a day. We might reassess this later.

Kim finished off the industrial size bottle of Evening Primrose Oil and I didn’t get another one. One of the things Dr. Sriram said when we met with him was that Evening Primrose Oil has not been shown to provide any benefit. So we finished off the bottle and did not replace it. Kim initially started taking Evening Primrose Oil after reading Judy Graham’s book, “Multiple Sclerosis: A Self-Help Guide to Its Management”.

I’m also putting in numbers for Lactobacillus acidophilus and Activated Charcoal.

Supplement . . . . . . . . . . Wheldon Adjuncts . . . . . Porphyria Regimen . . . .. Kim’s Current

Vitamin C . . . . . . . . . . . . . . 1000 mg daily . . . . . . 1000 mg x2 daily . . .. . . 4950 mg daily
Vitamin E . . . . . . . . . . . . . . . 800 iu daily . . . . . . . . 400 iu x2 daily . . . . . . . 400 iu daily
Omega 3 Fish Oil . . . . . . . . 4000 mg daily . . . . . . . . . . . . . . . . . . . . . . . . . 1200 mg daily
Evening Primrose Oil . . . . . 1000 mg daily . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . .
Acetyl L-Carnitine . . . . . . . . 500 mg daily . . . . . . . . 500 mg x2 daily . . . . . 500 mg x2 daily
Alpha Lipoic Acid . . . . . . . . . 150 mg daily . . . . . . . 400 mg x2 daily . . . . . . . 345 mg daily
Coenzyme Q10 . . . . . . . . . . 200 mg daily . . . . . . . . 30 mg x2 daily . . . . . . . 72 mg daily
Selenium . . . . . . . . . . . . . . 200 mcg daily . . . . . .. 100 mcg x2 daily . . . . . . 200 mcg daily
N-acetyl cysteine . . . . . . . . 600 mg x2 daily . . . . . . . . . . . . . . . . . . . . . . . . 4900 mg daily
Vitamin D . . . . . . . . . . . . . . . 4000 iu daily . . . . . . . . . . . . . . . . . . . . . .. . . . 5000 iu daily
Vitamin B Complex (1) . . . . . . . . daily . . . . . . . . . . . .. see below . . . . . . . . . . . . . . . . . .
. . . Folic Acid -B9- . . . . . . . . . . . . . . . . . . . . . . . . . 400 mcg x2 daily . . .. . . 1000 mcg daily
. . . Thiamin -B1- . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 mg x2 daily . . . . . . .. 27 mg daily
. . . Riboflavin -B2- . . . . . . . . . . . . . . . . . . . . . .. . . . 10 mg x2 daily . . . . . . .. 27 mg daily
. . . Pantothenate -B5- . . . . . . . . . . . . . . . . . . . . . . 100 mg x2 daily . . . . . . . . . . . . . . . . .
. . . Pyridoxine -B6- . . . . . . . . . . . . . . . . . . . . . . . .. 100 mg x2 daily . . . . . . . 32 mg daily
. . . Biotin -B7- . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 mg x2 daily . . . . . . . 300 mcg daily
Magnesium (1) . . . . . . . . . . . 300 mg daily . . . . . . . . . . . . . . . . . . . . . . . .. . 700 mg daily
Calcium (1) . . . . . . . . . . . . . . 500 mg daily . . . . . . . . . . . . . . . . . . . . . . . . . 1070 mg daily
Sublingual B12 (2) . . . . . . 5000 mcg x3 daily . . .. 5000 mcg x3-6 daily . . 5000 mcg x2 daily
Ultimate Probiotic . . . . . . . . . . . daily . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Billion daily
Turmeric . . . . . . . . . . . . . . . . . optional . . . . . . . . . . . . . . . . . . . . . . . . . . .. 4,000 mg daily
Bioflavinoids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . daily . . . . . . . . . . .. 458 mg daily
L-Glutamine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2-4 g x2 daily . . . . . . . . . . . . . . . . . . .
Glucosamine . . . . . . . . . . . . . . . . . . . . . . . . . . . 750-1000 mg x2-3 daily . . 750 mg x2 daily
Chondroitin . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 250-500 mg x2 daily . . . 600 mg x2 daily
Activated Charcoal (3) . . . . . . . . . . . . . . . . . . . . . . . . . optional . . . . . . 2,500 mg middle of night

Calcium Pyruvate (this is really part of the protocal now) . . . . . . . . 3 gm 30 min before Azithromycin

(1) Kim takes most of this with her evening vitamins to create a time separation with her ABX. The protocol recomends not taking these at the same time as Doxycycline
(2) This is adjusted in the protocol – see protocol
(3) Kim takes her charcoal in the middle of the night. She has also added 400 mg of Cimetidine that she is taking with the charcoal.


Pulse 4

Day 2, Kim woke up with inability to use her left hand. This worked out after a few hours of being awake. This remined Kim of one of her first and earliest MS sysmptoms many years ago. I ran out to buy the Cimetidine this evening. Let’s call it what it is, worry. There’s a feeling of helplessness that overcomes me at times. It’s a good thing when it pushes me to move sooner rather then continuing to collect info. Kim started Tagamet the middle of the night on day 3.

Day 4, After reading an excerpt from the Vanderbilt patent on CPn Help, I got Kim some Tagamet to take at night with her charcoal. Kim’s been having a tough time with die-off reactions and I’ve been looking for a way outside of adding more charcoal to help. I get the impression that folks only use this durng Flagyl week. I’m also hoping to learn more about Chitosan, Glucose and Oregano Oil. Kim had a good 9 second 25-foot walk, though it was a bit wobbly today.

Day 6, maybe it’s the fact that it’s Kim’s 4th pulse, maybe it’s that she ran out of Copaxone and her Neurologist’s administrative staff didn’t get the refill in on time, maybe it’s the Cimetidine, maybe it’s the increased curcumin, maybe, maybe, maybe ……. Kim’s not so dazed this pulse. She has not cried, fallen or peed her pants. Kim also says she has a new ability. She can flip her head back to make her hair go back without losing her balance.

4-Days post-pulse, Kim has regained her ability to have an orgasm. She did her weekly 25-foot walk this weekend. This is the weekend in which the walk is typically “slower”. Kim had a great walk – 8 seconds!!!


Three Points about “Proof”
I’m amending this post to add this stuff I posted elsewhere.The original thread is here. There comes a time when you observe a “Doubting Thomas” and you realize that it’s just not going to be a productive engagement to go any further. Think about the Monty Python Argument Clinic. Here are my three points to make in the confrontation “Thomas v/s ABX’er”. This is my reflection on my time as a “Doubting Thomas” and how much I just wanted the ABX’ers to give me straight answers.

Point One
I was genuinely frustrated with my search for concrete info and proof about ABX. ABX won't work for an atheist. Why? you need to have a commited faith in what you are doing. You cannot sway in the wind - it's very, very, very easy to find yourself rethinking and doubting your decision. Many have said you get worse before you get better and we have had the very frightening experience of not being sure if we made a mistake. You WILL revisit past symptoms and in an environment that is so cutting edge, you must have resolve and faith in what you are doing. This is easier said than done. When Kim most recently lost the ability to move her left hand at all, it was a recurrence of one of her very first MS symptoms. Deep down inside, I was feeling panic. Herein is where the rubber meets the road ...... this won't work for anyone that is not FIRST resolved to doing it with a faith and understanding of what's involved and what might happen. So, while others may or may not agree with me on this, I feel that the biggest hurdle isn't finding a doctor, or getting the ABX. (I know that's easy to say in hindsight). No, the biggest hurdle is knowing what you're doing and bringing a confidence to it that will carry you through the tough times. In the flowchart of ABX, I think the question, "Are you confident and certain about ABX, even in the face of its side effects?" comes before, "Have you found a doctor who will prescribe ABX to you."

Point Two
I have a fairly well documented path here at TIMS and I can very easily relate to those who want proof. Here at my office this morning, I look over my desk and it's clear to me that I have 10-times more paper here on the desk (the one I allegedly do my job at) related to MS than I do actual work I’m paid to do. I have neatly organized folders with tabs labeled stuff like, “NF-KB”, “Macrophages”, “CD8” and “Cytokines”. That’s just a few of the dozens of folders I have neatly categorized some of my pre-ABX research. Then I have stacks of other articles, many I could not understand many I just never got to reading. I have spend hours that I should have been working doing searches at the Journal of Immunology website (a fav of mine). I also went out and bought my own copy of McAlpine’s Multiple Sclerosis, a 1000 page book of all that science has accepted about this illness. It’s the most expensive book I’ve ever bought.

I don’t say this to try and impress folks; I say this to describe the path. I think most everyone here at TIMS is looking for answers. Admittedly, I’m perhaps more obsessive compulsive than others and I’ve made this into a mission of sorts. But, I want those who are uncertain about ABX to know that I understand why you’re here, what you’re trying to do and why you find the folks here (including me) at times frustrating. When Kim and I met with Dr. Sriram, he told us, “it helps some people and it doesn’t help others and I haven’t figured out why. If it helped everyone, we wouldn’t be sitting here right now.” To me, his statement shows that he wanted to know if we were certain that ABX was what we wanted to do. Even Dr. Sriram wants to know that the patient has engaged in their own discernment. I think Dr. Sriram knows that ABX threapy is way harder than taking Copaxone shots. I have been where you are, but this doesn’t mean you have to follow the path I have left behind.

Point Three
There are a lot of points to make, but most are covered in other threads. So, I’ll make one more point about human behavior that I have not seen anywhere else on these boards. Several years ago I bought a Water-Pik teeth cleaner machine. If you don’t know what a Water-Pik is, it’s like a super miniature pressure washer for your teeth. I thought this was the coolest thing in the world. My teeth felt so clean. When I say “coolest thing in the world”, I mean, seriously, I thought I had found the one single thing that everyone in the world needed. You might have had this experience with something you have bought and just fallen in love with. Maybe you think I’m nuts for feeling so strongly about my Water-Pik. I gave one to my Dad for Christmas. Do you know where this story is going? He didn’t “get it”. Actually, I wonder if he thought I was trying to tell him that he needed to brush his teeth. Dad was gracious, but I learned something about my own excitement and strength of belief. No matter how good something is, you need to step back and see the perspective of others, others who might not be ready to see the greatness and usefulness of a Water-Pik. Others might find my well intended behavior insulting.

On the flip side, I once received a hot glue gun as a gift. I thought it was silly. Boy was I wrong! Of all the tools I own, I use the hot glue gun the most; more than the cordless drill. When I finally burned out the gun from over use, Kim bought me a super industrial size glue gun. I used it yesterday with the boys to make Kim’s Mother’s Day gift. I’d have never guessed how much I’d like the glue gun, but I sure am glad I was given the first one. Since then, I’ve given several to others as gifts and folks have found that it’s the greatest thing since sliced bread. So, the intensity of our views and feelings can mislead us, but they can also uncover genuine treasure. One of the gifts of life is that we get to spend it working to discern the difference.

Ken
Last edited by notasperfectasyou on Tue Jun 24, 2008 8:33 am, edited 2 times in total.
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Kimcredible!!!

Postby notasperfectasyou » Thu May 22, 2008 9:48 am

Super Powers Check In

I realize that I have not done such a good job of keeping track of this. So I’m going to type this up now, 2-weeks post pulse 4.

Walking: We did Kim’s 25-foot walk last night 5/19 and she set a record! 6.6 seconds! We did not get to the walk over the weekend because of parties and baseball games, so we did the walk at night on Monday – an Azithromycin day. Kim’s walk was very determined looking despite being a bit “clompy”. I also walked with Kim over the weekend as she circled the house in the yard. The ground is very uneven and I hope that Kim might be able to build more confidence on imperfect surfaces if we continue doing this. We are also talking about exercise. There is the motivation part and the payback part. I think the motivation part is about genuinely setting aside time for exercise. This is hard for Kim to do. We talk about her needing to put herself first. The payback is what happens the rest of the day after exercise. It’s tougher to get around the rest of the day after exercise which also makes it hard to get motivated.

Peeing: Kim needs to wear pads for baseball season. Games are a couple hours long and the restrooms are spread out, if any. Kim’s been downing cranberry juice for a suspected uti which seems to further trigger the urge to pee. Despite all this, Kim seems to be using fewer pads than she was a couple months ago. Like Sarah mentioned a few posts back, Flagyl seems to increase the need for pads.

Copaxone Sting: Kim’s not feeling the sting right now. I have been anticipating its return since other “Super Powers” reflect retracement. We continue our sabbatical from “Sting Reduction Technique”.

Orgasms: In the past months there seemed to be linkage between Copaxone sting and orgasms. Orgasms returned just a few days after the 4th pulse ended.

Body Heat: It’s been mostly in the 60’s outside during the day. Kim has been getting warm at night trying to use less covers, or maybe just a sheet. Kim has not made note of feeling unreasonably cold within immediate memory. I feel that it’s a little chilly around bedtime though I’ve not said anything to Kim about it.

Left Hand/Leg: No issues to report here. I will say that Kim’s been improving at the driving range and she scored 30 points at TopGolf this last weekend. A few months ago Kim would whiff at the golf ball 2 or more times before making contact. Now, it is more often the case that she makes contact on the first swing. Her balance is also improved. When she’d swing the club before and lose her balance a bit. Not “falldown” balance loss, just “whoa, I caught that” balance loss.

Brain Fog: Kim had one day, I think it was the 5th or 6th day of Flagyl that was somewhat foggy and that was it. She’s been dealing with overwhelming issues at home and somehow she’s keeping things coordinated with the boys, school, carpool and doctor appointments. I’m really impressed with how she’s kept up with things this week. Just for notational purposes, in my subjective view, serious brain fog is when Kim gets a blank stare or sorts, doesn’t talk much, seems almost dazed and still. When Kim is somewhat fogged, she is short and more easily frustrated. Meaning, the outside stimuli (often non-conforming boy behavior) reaches a point of overload and Kim might shout something like, “Fine, don’t come running to me later”. It’s these times that I feel she needs a timeout to “catch up”.

Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Weekly Walking

Postby notasperfectasyou » Tue Jun 10, 2008 12:25 pm

Pulse 5

It’s hard to believe Kim’s only 5 pulses into ABX. We realize that this is a process, with emphasis on “process”. At work, I’m the guy that introduces bureaucratic administrative rules to “the process”. It drives people nuts that they can’t get stuff done because there’s a form missing. “Process” can have a sluggishly slow negative connotation and I see how Kim feels that she just wants to get it done faster. Yes, she experiences improvements, and yes, she feels all the side effects that dig deeply into the improved feeling.

I think a huge key to being on ABX is being able to distinguish between things you feel because of MS and things you feel because of ABX. It’s important to be able to keep these separate. It would be a very bad thing to interpret evidence that the ABX is killing bacteria to mean that your MS is worsening.

Day 1 – We went to TopGolf and played 2 games with the boys. Kim had good ball hitting coordination. Diminishing libido later in the day.
Day 2 – Kim’s voice became raspier. She started feeling the Flagyl tiredness and she took a nap. Kim also reported that she felt cold from day 2 to the end of the pulse.
Day 3 – Kim was tired all day, but she did not fall into serious fog and disorientation.
Day 4 – We had bad storms and lost power up to day 6. Despite lack of air conditioning, Kim didn’t get foggy.
Day 5 – Kim’s getting edgy. Definitely not so tired. Not a good time to have an argument, you’ll lose. Boys are listening better.
Day 6 – Kim’s complaining about bumps on her chest. She feels itchy under her skin and her teeth feel sensitive.
Day 7 – Kim didn’t cry the entire pulse.

Kim really was on a tear the second half of this pulse. She even said that she didn’t like her behavior and felt bad about it. Part of me wonders if this is a signal of regained health. Much of this stuff is about feeling as opposed to numbness. There was a spiritedness about Kim during this pulse that I find very positive.

Post-pulse has been noteable too. On day 1 of “no more pulse” Kim completed her 25-foot walk in record time! Less than 6 seconds. I got it on video. On day 2 Kim’s libido returned. This seems to be forming a pattern with Flagyl week. I’ll present more details of the walk below.


A Battle

We live in Virginia and you can’t ignore the fact that there’s a lot of civil war history here. We spent some time in Gettysburg a few summers ago and we learned all about the batttle. If you ever get the chance, spend a day playing tourist in Gettysburg. Please see the movie with Martin Sheen before you go, it will make your visit way more better. I see the method of battle in the civil war much like the battle against CPn. You start out with two armies and the CPn army is engaged in a slow process of picking off your myelin without engaging in direct warfare. But if you wait long enough, the CPn army will make a huge dent in your forces, albeit in small losses that might not be so noticable. So you engage in battle with ABX and now you have a real fight. Now there’s a lot of inflamation and die-off. It’s unpleasent at times. But what happens if you stop the battle or take a break? Don’t let the enemy regroup. Don’t let up for one minute. You need to finish what you started. I see ABX as a commitment to the end this way.


Better Than Fampridine

There’s a drug that’s in phase III called Fampridine. It’s supposed to improve conduction in damaged myelin. The sole outcome that this trial is measuring is walking speed. In the recent trial, 42.9% of the folks taking Fampridine had improved walking speed. Within that group of walkers, walking speed was 24.7% faster.

I realize that it’s not directly comparable, however, I’ve been videorecording and timing Kim doing a 25-foot walk for several months now (very special thanks to Sarah for recommending this several posts ago!!!!) and of our sample, 100% of the study participants have improved walking speed!

Ok, but more seriously, I’m going to do the best I can to impartially compare Kim’s walking improvemnts to the Fampridine trial.

Here are the dates and times:

Walk Date ______ Seconds ____ 8-Week Change

02/17/08 ________ 10.53 ________
02/25/08 _________ 9.63 ________
03/03/08 ________ 10.91 ________
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 ________
04/11/08 _________ 7.81 _________ 25.8%
04/20/08 ________ 10.81 ________ -12.3%
04/27/08 ________ 12.28 ________ -12.6%
05/04/08 _________ 8.97 _________ 46.4%
05/11/08 _________ 7.81 _________ 17.4%
05/19/08 _________ 6.60 _________ 23.2%
05/31/08 _________ 6.50 _________ 30.4%
06/08/08 _________ 5.78 _________ 26.0%

First of all, we skipped a week in May because we went to Atlantic City and didn’t do the timed walk. To Kim’s credit, we also walked the boardwalk and casino, which worked out to be a good bit of exercise. I’ve adjusted the 8-week computations to account for the missing week to try and keep the measured variance as close to 56 days as possible.

I’ve calculated the 8-week change to try and make the data more like the data I expect the Fampridine results to be like. In doing this I have eight separate 8-week trials to compare with the Fampridine results.

Of the eight tests, Kim improved her speed in six of them. In this test 75.0% of the walks had improved walking speed which compares favorably to the the 42.9% reported in the Fampridine trial. Within the group of walks that had improvement, average walking speed increased by 28.2%. This also compares favorably with Fampridine.

One detail I noted with Kim is that I’m not sure how much more she can improve without starting to jog. Kim doesn’t think she can jog. If you think about it, there would have to be a leveling off since walking can only go so fast. We also have some element of speculative accuracy in the guy working the stop watch. You won’t see me working the Olympics, but there is no doubt that Kim’s getting faster. Just to help you with perspective of how accurate we try to be, I measure out two door mats with a tape measure. They are exactly 25 feet apart.

Kim really didn’t feel like her improvement was so significant until I took the time to make a chart in Microsoft Excel. The chart clearly shows a downward trend. If you trade the stock market you’d also see what we call “lower highs” in the chart, meaning the recent upward spike is lower than the prior upward spike. I think this is significant too. I hope to be able to post the chart here at TIMS.

Spring can Sting

It’s been 63 days since Kim’s last Copaxone sting. That’s 63 shots without any sensation of stinging and now on the second day following the completion of pulse 5, Kim’s got feelin’ in her ass again. It’s too early to tell if this is the beginning of a new trend. I hope that Kim feels some stinging in the next week of shots, this would of course be an indication of improved nervous system.

This up coming week we are on a road trip to Vanderbilt with the boys. We’ll be at the clinic Monday after visiting the boy’s cousin in Norfolk. I’m sure I’ll have a post after our appointment. I’ve already sent Dr. Sriram a DVD of the first 12 walks. Ken

Photobucket

It was free to sign up!

Image
Last edited by notasperfectasyou on Tue Jun 10, 2008 5:51 pm, edited 1 time in total.
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby Loriyas » Tue Jun 10, 2008 5:48 pm

Ken
I am so anxious to hear about your appointment at Vanderbilt. My appointment is the following week.

It is so great that Kim is seeing the improvements that she is. I know in talking with her on the phone she feels positive about this. Congratulations!
Lori
Loriyas
Family Elder
 
Posts: 589
Joined: Sun Apr 02, 2006 3:00 pm
Location: Naples, FL

coming soon

Postby notasperfectasyou » Wed Jun 18, 2008 7:03 pm

Lori,
I will have a post soon. We just got back from Vanderbilt. I'm also wondering if this thread is getting boring. Is it to closed ended that folks don't want to post?
Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby SarahLonglands » Thu Jun 19, 2008 5:00 am

Ken your post isn't boring at all but most of the antibiotic people seem to do most of their gassing over at CPn Help. I've read all your posts, but my latest two posts here nobody seemed to notice either, but they were both virtually the same as on the other site, so most people had already replied there. I'll certainly reply when you post about your latest visit to Vanderbilt, though!

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.
SarahLonglands
Family Elder
 
Posts: 2106
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby daisy » Thu Jun 19, 2008 8:33 am

Ken - I read each of your excellent posts here carefully. Appreciate your taking the time to provide such detailed information - it's important for those that follow behind !

Don't usually respond to your excellent posts unless you have a question or I have a suggestion. Want to keep your thread clean so it's easy for others to read and learn without reading the chitter chatter :)
daisy
Family Member
 
Posts: 70
Joined: Wed Jan 24, 2007 4:00 pm
Location: Georgia, USA

Postby whyRwehere » Fri Jun 20, 2008 2:45 pm

I love to read how people are getting on, even though some of the details are a bit too detailed for me... 8O
Keep writing....
User avatar
whyRwehere
Family Elder
 
Posts: 908
Joined: Mon Oct 03, 2005 3:00 pm

PreviousNext

Return to Antibiotics

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service