MacKintosh's blog

Big Win

Hi, everyone.  Since there's nothing much going on here (though there's lots of work going on behind the scenes to update our site), I thought I'd tell you a little story.

After a lifetime of fighting what I thought was chronic fatigue, a bout of optic neuritis got me an MSi diagnosis in 2005.  As most of you know, I did the protocol for six or seven years.  Within months, I knew it was helping, when NOTHING had helped up til then. 

Today's the day! Fall back!

I owe somebody doctor info in Chicago

I've lost a few private messages while experimenting with organizing them.  I owed two people information on doctors in the Chicago area.  I've sent one off tonight, but there's somebody else and I can't remember who! 

If you're my 'who', please send me a pm and I'll send the info immediately.  Apologies. 

Anybody in or near Sarasota, Florida? (NOT a doctor request)

Hi, everyone - This is the good thing about having a network of people all over the country/world.  If anyone here is in or near Sarasota, Florida, could you send me a private message please?  Thanks in advance! Cool

There, but for the grace of God, go I...<

I'm often reminded this is not the MSi site, though many of us migrated here from ThisIsMS and a couple of other MS-centered sites.  Although this post is about MS, it's also about cpni infectionsi and how they steal our lives.

I'm sure, had I not learned of cpn and its treatment, I'd have become Debbie Purdy, in my own way.  I'm so grateful I didn't have to. 

'Twas the night before...

'Twas the night before (insert holiday of choice here)Innocent  and all through the house...

Whatever your holiday, whatever your beliefs, however you celebrate (or don't), may you have a season of peace and kindness.  And may we all have good health to look forward to in the New Year.

Live curious

Lately, I've noticed people in and around my life commenting 'because he said so'.  Today, it was a doctor who 'said so'.  Yesterday, it was a soccer coach who 'said so'.  Come to think of it, yesterday it was also an attorney who 'said so'. 

I was raised by two intelligent parents who treated children more as short adults than as difficult goats (apologies, Katman).  My parents encouraged questions, research, learrning, improving.  They rarely, if ever, said 'because I said so'.  As a result, I have always functioned better when someone explained 'why' to me, rather than 'because that's how it is'.

Which brings me to my point, if musings have a point. 

Spam and Missing Responses

Everyone, we have one tenacious and very prolific spammer coming here on an almost nightly basis, posting advertising links EVERYWHERE on the site.  Sometimes one of us will spot it immediately. (This is the benefit of having editors all over the world, in different time zones.)  Sometimes, it takes up to twelve hours for somebody to spot them, block the spammer and start deleting the dozens of posts.  Each post has to be deleted individually, which takes up to twenty minutes per spammer-slam sometimes.

I've been hijacked / spammed

This is just a blanket warning to anyone here who I've corresponded personally (off this site) with -

This morning, between 0759 and 0808 CST, my personal email account was hit by a thief and hundreds of spam emails were sent out FROM MY ACCOUNT. It has nothing to do with cpnhelp, except if you and I had a personal correspondence in the past, away from this site.

DO NOT OPEN email from me and do not open attachments. Several of my friends thought it was 'odd' that I'd send a viagra ad (really, like I'd ever do that), but they opened the attachment, anyway, and now their personal email accounts are sending out hundreds of ads to other people, and the stuff is spreading like wildfire.

Cold Turkey

Well, the good doctor and I have decided I should take a Lyme test, due to my recollection of a round, reddish circle on the back of my left calf some fifteen years ago. I'm off all antibiotics for the two weeks until the test is done. Just as when I started abxi without hesitating, I stopped them without another thought; I trust my doctor implicitly.

So, from being in the middle of a flagyli pulse thirty-six hours ago, I went to no abxi at all.  NACi and all vitaminsi and supps are still a go. 

This is so weird.  I feel like I'm waiting for the other shoe to drop.

Tuesday, 07 April 09 

Day Ten - Day Eight Hundred Eighty Six

A few nagging symptoms. A vague feeling of plateau. A general dissatisfaction. All were creeping up the last couple of months and I realized I'd not done a flagyli pulse since Christmas week. My doctor understood and okayed my latest adventure. Today is day ten of what is planned to be a thirty day flagyl pulse. Thirty days was an arbitrary number, but one I think 'do-able'. My longest thus far was something in the nineteen day range, maybe more; I don't keep meticulous track of my daily trek through antibiotic therapy. This will be different. I'll try to keep a running journal of the 'pulse', as I plan to do it a second time before I then add rifampicin into my cocktail.

Rock and Roll, with Some Blues Thrown In

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

Chapter One - 15 Nov 07

We're talking about my former boyfriend. High school.  (A long time ago, in a galaxy far, far away.)  I sent him a note when I got my MSi 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 cpni infection, too.

Not really MacKintosh's blog

Friday, 02 June 2006

Hi, all.  This is a test blog, also known as 'web log'.  I am writing this to show how a 'running' blog under one person's name can be done.  I will be adding to it for a few days to see if this is a viable way of handling blog entries, rather than creating a new one each time we have something to say about our day/life/protocol/habits/pet peeves/hair falling out.  Mine is growing back, by the bye...

Friday, 02 June 2006  (1545hrs CST)

Nothing really new to add to the imaginary blog.  Day five of a flagyli pulse.  Nothing but a mild headache on day one and some spongey foot feeling on day four for about an hour.  Michele, hair fell out in droves for about six weeks, now growing back at about half an inch every three weeks.

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