MacKintosh wrote:I recall Ken's extreme frustration at not being able to get that 'guarantee' from all of us. He researched (read his MS 101 and it will put you weeks ahead in your homework on antibiotics), he investigated, he shopped for promises and begged for pointers to that guarantee we all wish for and he finally said what most of us said. The science of this is sound. It makes far more sense than thinking your immune system woke up one morning, bored, and decided to chew on its own body. Since the antibiotics are fairly benign compared to what else is offered to MS patients and they don't necessarily keep you from taking other meds in addition, why the heck not do a trial?
Point One
I was genuinely frustrated. This won't work for an atheist. Why? If you read my milkshake/coffee thread, you'll see that 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 Xenu. 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 you; I say this to describe the path. I think most everyone, like yourself, who comes here looking for answers is on much the same path. Admittedly, I’m perhaps more obsessive compulsive than others and I’ve made this into a mission of sorts. But, I want you to know that I understand why you’re here, what you’re trying to do and why you find the folks here (including me) somewhat frustrating if not obnoxious. 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.” 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 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