Another one on board, vicariously

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

Another one on board, vicariously

Postby MacKintosh » Thu Nov 15, 2007 4:41 pm

So, I won't use his real name, but let me tell you an abx story. We'll do this as it unfolds, since he's just started the protocol... slowly.

We're talking about my former boyfriend. High school. A long, long time ago, in a galaxy far, far away. I sent him a note when I got my MS diagnosis, thinking it might be the last time I could coherently convey the information (I was sliding so fast). We've stayed in touch via email and phone for the past two years and, eventually, conversation turned to the likelihood of his having a cpn infection, too.

My rationale? We were thisclose for several years, those being the years I went through major lung infections, walking pneumonia, phantom chest pains and what was obviously the beginnings of this lousy infection of mine. I told him some of the things he was describing about his current life sounded exactly like the way my MS began. He had major leg cramping in his sleep, fuzzy brain, short-term memory lapses, a lack of certainty in holding items in his left hand... He also threw a couple of new ones at me: fingers feeling frozen (in his head, though they were warm to the touch) every morning upon waking, passing out in the kitchen and not remembering how he got there, an inability to read upside-down words anymore.

I sent him a birthday package in mid-September. The vitamins and supplements on David Wheldon's protocol, including NAC. He started out with one NAC daily. About a week later, I checked in on him and he said he felt fine. No reactions. He seemed disappointed, so we upped the NAC to two a day and upped his vitamin D to 2000 units a day. He called me and said he was really worried, as the frozen feeling in his fingers, causing him to put his (not really cold at all) fingers in front of the car's heater vent on the drive to work each morning, had worsened dramatically, and the fingers felt cold most of the time now. Other than that, though, he thought nothing else was going on. Except he was coughing and clearing his throat and sounded congested. I mentioned it to him and he said, "Well, I'm coming down with a cold. Like a real chest cold. It's weird, 'cause I haven't been sick in about ten years." I reminded him I'd warned him about 'NAC flu'. He was floored! Here was the confirmation of likely cpn infection!!!

And, in that conversation, he also mentioned something I'd never known before. His dad died in a nursing home. From MS.

_________________________________________________________
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.
__________________________________________________________

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.
Last edited by MacKintosh on Sun Jan 06, 2008 5:36 pm, edited 2 times in total.
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Postby CureOrBust » Fri Nov 16, 2007 2:29 am

dont you mean, "with" MS? not "From"
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Postby SarahLonglands » Fri Nov 16, 2007 3:30 am

Good work, Mac. Looks like he should start the whole thing soon.

Is that a touch of irony cureo? The MS society might not like to admit it, but if you die in a nursing home, totally useless and fed by a tube, at not yet even fifty, after having contracted MS twenty years previously, you die FROM MS, even if it was because you ended up getting a septicaemia as the result of an infected tube. I'm talking of my likely demise here, nobody else.

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.
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Postby Rudi » Fri Nov 16, 2007 10:33 am

Indeed Sarah,

Studies indicate that likely lifespan of a person with MS is 35 years after contracting the disease. MS is a killer, however it is seldom referred to as the cause of death on a postmortem.
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Postby gwa » Fri Nov 16, 2007 12:22 pm

Rudi,

I have never seen the figure that people with MS will live about 35 years after diagnosis. Usually it is written that we will die about 5 years prematurely.

The 35 year figure sounds wrong to me because people are diagnosed at various ages in their lives. I have had it for well over 35 years now and am doing well enough to not think that I am on my way out by any stretch.

gwa 8O 8O
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Postby Rudi » Fri Nov 16, 2007 12:50 pm

Gwa,

I am very glad to hear you are doing well!

An average is an average :)

However as Sarah states the potential of the disease to cause death is often understated.

MacKintosh well done on giving your friend a push. Prevention really is the key.

Rudi
1st traceable symptoms July 2006 - realized I had MS November 2006
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Postby SarahLonglands » Fri Nov 16, 2007 2:43 pm

Well, speaking of averages, 42 isn't 35 but is near enough:
http://www.jns-journal.com/article/PIIS0022510X0700130X/abstract
I wouldn't have lasted twenty five years, from the age of 24.

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.
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Postby Rudi » Fri Nov 16, 2007 2:56 pm

A slightly darker outlook here:

http://www.geocities.com/HotSprings/3468/mortality.html#2

Though the majority of patients in this study would not have benefited from medication or nutritional / supplement advice that can be easily gathered over the Internet these days.
1st traceable symptoms July 2006 - realized I had MS November 2006
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Postby MacKintosh » Fri Nov 16, 2007 3:27 pm

Cure or Bust, No, I said what I meant. He didn't die because he had leukemia, or diabetes, or AIDS, or lung cancer. He died of MS.

Had he not had MS, he would not have been locked into a fetal position, wasting away, unable to function on most levels, including his mind. His son, at least, won't share that fate.

I'm sorry that I sound bitter, but this infection murders people and it doesn't have to be that way. It frustrates me. Hugely.
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
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Postby gwa » Sat Nov 17, 2007 8:24 am

I am going to live it up for the next 7 years! Never know when the grim reaper will come.

One thing about the figures is that most people who are adults will be dead of something after 42 years whether it is MS or cancer or heart disease, etc. etc...

Seriously, I am constantly amazed that so few MS'ers are aware that this disease kills people. Too many think it is not lethal, but it often is the cause of death.

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Postby SarahLonglands » Sat Nov 17, 2007 9:30 am

This is what the UK MS Society says and since here it is most people's first port of call upon diagnosis, it isn't surprising that so many people think it is not lethal. Of course, for many people it isn't, but I thought that when I was in my twenties.

MS is not a terminal illness. However, it is a lifelong condition, so once you have it, you have it for life. Like everyone else, you are most likely to die from natural causes and can expect to have a relatively normal life span.

MS is complex and it is impossible to predict how you may be affected over time. As a result, it is as difficult to determine the life expectancy of someone with MS as it is for someone who does not have MS.

Research suggests that:
the overall life expectancy of people with MS is only slightly lower than that of the general population.
since the 1960s, increase in life expectancy for people with MS has grown more rapidly than in the general population.
improved healthcare for people with severe MS has been effective in reducing premature deaths.

http://www.mssociety.org.uk/about_ms/first_questions/life_expectancy.html

I hate it when someone says "research suggests that................." but then give no evidence, just expect you to believe them. I wouldn't wanyt to die locked in the foetal position in a nursing home, no matter how well I was cared for.

Sarah
Last edited by SarahLonglands on Sat Nov 17, 2007 9:35 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.
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Postby MacKintosh » Sat Nov 17, 2007 9:33 am

And notice, they make no claims as to the QUALITY of that extended life expectancy. I don't want to be kept alive by feeding tubes if my brain has ceased to function.
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Postby SarahLonglands » Sat Nov 17, 2007 9:40 am

Overlap with my edit there, no quality of life matters greatly to me: I have seen someone in a nursing home due to a massive stroke. She couldn't do anything herself but cry. She used to be a concert pianist.

Sarah
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Postby MacKintosh » Wed Dec 05, 2007 9:43 pm

Okay, Chapter Two of the story is now added into the original post. If you already read the original post, you want to start reading at 'Chapter Two 05 Dec 2007'.
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
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Postby SarahLonglands » Thu Dec 06, 2007 3:46 am

With regards to the bike accident and feeling healing, when he actually starts abx properly, try to him to photograph/have photographed, the most badly affected areas when starting and then every eight weeks or so. DW should have done that.

But first, make sure he gets the prescription!

Sarah :wink:
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.
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