This Is MS Multiple Sclerosis Community: Knowledge & Support

I've decided to post the subsequent 'chapters' (updates) in both the original post AND in the 'response' portion of the thread, as replies seem totally out of context, otherwise. Sorry for any confusion.

Chapter Two - 05 DECEMBER 2007

Did I mention this man is an accomplished musician? I have a twenty year old tape of Jimi Hendrix playing a guitar solo. At some point, it segues into my friend's hand, rather than Hendrix'. I caught the transition, but most people wouldn't. He's that good. And now it's two decades later and he's even better on that guitar. What's strange is, the playing doesn't seem to have suffered.

He does, however, complain of 'tennis elbow' with no recollection of an earlier injury. And he tells me the elbow has been borderline unbearable the past two weeks, now that he's upped NAC to a full dose of 2400mg daily. Oh, yes; the 'good' elbow is now hurting, too, when it never did before, so we talked about cpn infection lodging in places you can be totally unaware of and how the throbbing is likely an indication the infection is being addressed there.

While he says he now sleeps well again, through the night without waking, and he has more clarity and energy than he's had in many years, he groused at me last night that he's again got the same sore throat he had when starting NAC. He reminded me he 'has to be one hundred percent at work', so he hopes the abx don't take his knees out from under him when he starts. He's dragging his feet on seeing the doctor for the prescriptions, but promised to make the call this week. (A nudge about having to pay a new deductible in January got the ball rolling. Better to see the doctor THIS year than pay the deductible out-of-pocket right after the holidays!)

Our conversation turned to other things and he later asked, out of the blue, if I remembered a motorcycle accident he'd had in his early twenties. I did, because I clearly remember him refusing my offer to come to the hospital. He'd traveled a good distance on his hands and elbows (tennis elbow, anyone?) on a gravel road and had pockets of gravel under the palms of his hands, which had to be cut, like ACTUAL pockets, and cleaned out. Not the best thing for an extraordinary guitar player.

His point in bringing it up was a 'feeling' he's having. He says he can't place it physically on his body, but he is feeling like he's 'healing'. He said he feels exactly like he felt a couple of days after the bike crash, as his body got over the shock and he could feel the healing phase starting inside him. He says he's never felt that since the crash, but he feels it right now. I'd say we're on the right track here.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

The conspiracy of silence which surrounds the lethal aspect of MS really infuriates me. (Those of you that know me, understand that I am not easily infuriated). It is so cruel to sufferers and carers, it does not prepare us for the horror of incapacity, it does not motivate anyone to battle for better understanding and treatment of the disease, and because sufferers gradually disappear from site there are few high profile sufferers leading campaigns to highlight the ravages of the disease.

Unlike cancer (another often lethal disease) your social, emotional and physical life comes to a standstill. I have personal experience of it and would not wish it on any one, but my loved one suffering from cancer still has a partner, physical capacity to enjoy life and emotional and social support. My loved one suffering from MS lost everythin for a while and if we had not come upon this treatment, she would have lost everything full stop. No one would willingly have a relationship with someone who was slowlyg vanishing from the world...

Agreed. If it turns out money is the motivator for keeping antibiotic therapy under wraps, may big pharma rot in hell. SO many lives wasted unnecessarily and so much pain and heartache along the way.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I think that as well as money and pharma you have to think about neurologists not believing that since starting training they have been living a lie. Even the really big names won't have started training before the sixties so have grown up believing that MS is an auto immune disease that if you have it, you are stuck with it. A few are beginning to think that times are changing, but medicine is by and large a conservative profession, good in some ways but not in others. However one of David's colleagues, a haemotologist, recently attended a conference in which one of the younger generation put forward such a brilliant idea that the most brilliant person of the older generation, now in his seventies, gave an impromptu speech saying that he had been forced to admit that he had been wrong all these years.

Sarah

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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.

My little rant for today.

I work about 6 blocks from the Whitehouse, I've lived in DC metro my whole life. But I've never protested anything. Some where inside I've always wondered that it would be neat to go and protest on the mall. I've never felt an issue enough to protest.

While we don't have a march in mind, I feel very strongly about the state of MS treatment, I would stomp around the mall and rabblerouse for this cause. Though, I don’t thing this is where we want to go. While I don't believe we are deliberately deceived, I also don't believe we get anything close to full disclosure. Somewhere in that vast grey area is how I see the state of "modern neurology".

So where do we start? Sarah knows it took a good amount of head banging to get over my skepticism. I’m not really ready to start spreading the word until Kim and I see some results in her disability. Then, even if I help folks discover the way of CPn, it’s so frustratingly hard to find a doctor. How can we get this message out?

Death is number 10 on the EDSS, it’s not like it’s hidden. It’s pretty darn clearly stated in a most frighteningly clear way. But, yes, neurologists don’t tell folks about this. But then again, I don’t know that I would if I were a neuro either. It’s not really where I’d encourage a patient to be. Please don’t jump on me yet. All I’m trying to say is …….. back up – I coach my son’s baseball and basketball teams. We have limited time, about 2 hours a week to practice. In those few precious hours, I want to get the most benefit into the kids as possible. I want them to leave practice ready and fired up for the next game. As a coach I’m all about encouragement, mentoring and directing the mind toward an attitude of positive strength. There is no positive result to be obtained from telling a kid the negatives.

So all I’m getting at is that I’d want my neurologist to be hopeful, positive and encouraging. I’d want to leave his office feeling empowered with a reason to fight. If I were a neurologist, I’d likely not tell folks that MS can kill you. That’s my perspective and my reasoning. With this limited, tiny slice of “modern neurology”, I’m ok with it.

But, the inability to have openness for other ideas besides autoimmunity is frustratingly dumbfounding. The field has been chasing around autoimmunity for DECADES. I know because as you can well imagine I have STACKS of articles on my desk of stuff I’ve printed up and read from lots of medical journals. Stuff about B cells, T cells, Dendritic cells, NF-KB, Cytokines, and just about every other MS doctor word you can think of. I own my own copy of McAlpine’s MS 2006. I have more MS paperwork on my desk here at work than I do my actual accounting work.

Hey, maybe, just maybe it’s a bug.

So I’m all over taking MS away from the neurologists and giving it to someone else like immunologists or even dentists. I’m not opposed to the part about wanting the give the patient a good mental sense of hope, but I’m down right opposed to unwillingness to think. Now, I do understand that the insurance companies are the folks who did this to us. I fully comprehend that doctor developed science can’t be applied by doctors, until some insurance person who knows nothing about medicine has agreed that applying the knowledge won’t cut into next year’s raise. I also understand that doctors like the free Avonex pens and Rebif notepads they get, without which it would be nearly impossible to run a medical practice. I understand that David didn’t kill Goliath with his bare hands.

Ideas:

1) Lobby Oprah to have Sarah on as a guest.
2) Develop a pamphlet to hand out at MS events.
3) Get a super famous person with MS on the protocol.

So that’s my rant for today. If it didn’t feel like a rant find a Lewis Black video on the internet (homeland security is a good one) and then reread this post in a ranting way.

Have a Great Weekend, I’m gonna play in the snow!!! Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken, I've already put the Oprah package forward. You weren't on CPn Help or here when I asked people (already doing the protocol) for their stories and info, but we'll see how it goes.

I've also recently contacted a famous person with an MS relative who he works tirelessly for.

Relax. You sound like me two years ago, railing at the machine. First, work on getting Kim better. You'll have your hands quite full once she's on the protocol.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

If you folks are so sure that this is the biiggest travesty in the medical world do something about it. Sarah your husband must know how to change this. Here you are talking like you and others have found answer and people are suffering and being diagnosed every day. it's like knowing the cure for cancer and just sitting on it. Why WHY Why has it not been investigated?



These words are just to much when you think whats at stake.

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Had ms for over 19 years now.

Robbie, Read my post above yours. We ARE trying to get the word out. I am in touch with people who may be able to publicize it soon.

Considering many doctors still refuse to believe ulcers are caused by a bacteria, it isn't easy to change the minds of a whole profession, especially when they are heavily invested emotionally and financially in having 'been right' for the last forty years of their careers.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Robbie, David is working tirelessly at it, believe me. Things don't happen overnight.

Sarah.

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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.

Famous people healed with antibiotics
(who speak publicly about their medical ordeals-)

Keith Jarrett- jazz pianist/composer- for chronic fatigue
Amy Tan - American novelist- for advance Lyme disease

we're finishing up my husband's Igenex testing, and he may be starting the protocol in the new year. will keep all posted-
best,
AC

At the moment, David and others who are trying to change people's opinions on a Combined Antibiotic Protocol are voices in the desert. What we need is a sea change. Eventually, when enough experiential evidence can be shown doctors and patients will have to take this seriously. In the meantime, more cautious and sceptical people want proof, and proof in the form or research and double blind studies take much money and years of work. There is no will from any one with money to fund this research, because there is no money to be made from it. These drugs have been around for ages and don't bring much revenue, if any, for major pharmaceuticals.
One of the members of CPn Help, was interviewed on a major US TV network over a year ago about this kind of treatment, he told us that doctors were also interviewed, however this programme has not been aired yet....
Its up to us to provide the sea change in the best way we can, by talking to people and doctors, posting on sites like this, by writing to magazines and newspapers, by being knowledgeable, and of course putting our bodies where our mouth is and doing this for ourselves so that we become part of the evidence.
One newspaper, The Scotsman, because its readership is located in Scotland, the region most affected by MS in the whole world, is more likely to publish interesting reseach and people's experience about MS than others and it may be worth writing the occasional e-mail or letter to the editor.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Note: 06 January 2008

He's dragging his feet on going for the prescriptions. He's still on 2400mg of NAC daily, in addition to all the supps on the Wheldon protocol. Still sleeping 'better than he can recall in decades' and energy levels are much better than in many years. I'll let you know when he sees the good doctor.

(This note is also appended to the original post.)

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Have you gotten him motivated now? Did he put away money in the company cafeteria plan for 2008? Does he have a Dr. Appt? Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Ken, He had a family issue to deal with, which explains the delay. He's probably got a couple of weeks' delay in the process right now. Still motivated.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I think its great and I certainly know what it's like to take your time getting to the starting line. I don't know your friend so it's very hard to gauge the delay. If Kim and I lived in Chicago we'd have been on ABX more than a month ago.

So this thought might be out of context.

Everybody has to do their own disernment. Thinking, it's a life long process. Some of us call this judgment or common sense. However one arrives at decisions, the key is that we can't be making decisions for each other and despite how much I felt that Kim needed to be on ABX, I needed Kim to desire to be on ABX, not so much me. Kim needed to understand ABX. Kim needed to be ready to make sacrafices for it, not me.

In upcoming posts Kim and I will talk about the benefit we are just beginning to experience. I'm not ready to call it a miracle yet, but I am a slow and deliberate sort of guy, aren't I? Based on what Kim has experienced in just 5 days, we'd think everybody with MS needs to start ABX right now. But, the reality is that the world changes slowly, one person at at time and we are fortunate to be two of those persons this week.

We hope your friend decides to change the world too. Dr. Sriram was clear that not everyone gets the benefit. Your friend won't know until he tries.

Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />