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