Anecdote's continuing itinerary through light and shadow

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

Postby MacKintosh » Wed Mar 05, 2008 6:25 pm

Sarah, Baiting me, are you? The longest I've done til now is something over two weeks, but that was last Fall. I remember feeling very relieved to take that last pill, too.

So, having said that, you know I'll take the challenge. I've noticed the flagyl has caused me to be rather short again, which I thought had gone for good, but apparently not. I don't know if I can avoid social intercourse for a whole month, but ... only twenty-five days to go.

The hardest part, so far has been 'un'-ordering a drink I ordered before dinner with my mother last night. Being in Boston for St. Patrick's day might be hard, too, and I'd thought to take a breather for a couple of days then, but I can be tough and watch instead of partaking. (I'm not a green beer sort of girl, anyway.)

So, Ken, shall I run for president, or no? :wink:
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 Mar 06, 2008 6:20 am

Of course I'm baiting you Mac, but I'll tell you what, flagyl always can make you short: nothing to do with any germs and I only meant "more than fifteen days."

After the first couple of times, I continued to drink as normal, which isn't very much, though. I thought, if DW can do it, so can I, and he drinks more. Some people can, but you can't put that sort of thing on the instructions. Whatever you might drink on St. Patrick's night is no loss, though.

Further bait: I might get Redcliffe to print some larger ones for me, but that means the full month!

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 SarahLonglands » Thu Mar 06, 2008 12:40 pm

By the way, welcome, one and all to "Cult Corner."

I have spent my life avoiding cults, but I seem to have inadvertently started one by the fact of taking antibiotics to halt my MS. Weird or what?

Sarah 8)
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 » Thu Mar 06, 2008 2:47 pm

Indeed we are weird. I came to that conclusion about a year ago. The difference between me a few years ago and me now is that I simply don't care if I'm weird. Everyone else will have to adapt.

As long as there's no purple Kool-Aid involved, I'm in this cult to stay.
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 Mar 06, 2008 4:35 pm

You obviously haven't seen what I have 8O

I'd never force purple Kool-Aid on my worst enemy, though!

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 MacKintosh » Thu Mar 06, 2008 6:33 pm

Yuck under the best of circumstances, but the KoolAid thing belonged to Jim Jones' cult. Probably a bigger splash in the American press when it happened...

Day six of flagyl and I finessed a bad situation at work today. Running for president again, Ken!

Sarah, if I make thirty days, I may just celebrate by hopping a flight to London. One never knows; flagyl does make us a bit goofy... :wink:
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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Mac For President!!!

Postby notasperfectasyou » Fri Mar 07, 2008 8:03 am

VOTE FOR MAC!!!!

I'm not sure how we start your campaign or what the name of our party will be, but I'm certain we can start off by accusing the other candidates of being infavor of CPN bacteria - let's see if they can defend themselves agaisnt that charge!

I will politely ignore the koolaid discussion since I have given up sugar for Lent which is a lot harder than you think.

One of my observatons about this therapy is that much of the side effects are just like having an exacerbation. I think this is a problem for our cause. Not that folks won't know the difference, but ABX is not a user friendly therapy or one that you can just get a script and run with.

What I'm trying to say is that folks spend a lot of time preparing for the therapy and learning about it and without that learning, many would think that the ABX caused an exaserbation. There is an ironic hurdle here and I'm just now really observing it. Kim is strong and she knows that this is necessary, BUT, it feels so mucdh like an exaserbation that it's very frustrating for her to re-live those kinds of symptoms. Am I making sense? Ken
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Postby SarahLonglands » Fri Mar 07, 2008 9:09 am

Well, I'd vote for her if we were in the same country!!!!

The other parties could be accused of being in favour of CPn by not taking the ridding of it seriously: 10 days of doxycycline and all that.

You are making sense about exacerbations, because although being SPMS by the time I started, I did still get relapses as well, just to spice up the mixture. Its a difficult thing to address and I'm sure that some people only doing it half heartedly give up because they just think it isn't working. However, when the new Vanderbilt lab is properly up and running one of the things they will be looking into is how the treatment might be made shorter but I hope easier as well.

Actually, just having thought about this, it is quite useful still having relapses thrown into the progression, because I can say that I have now been for four and a half years without one, whereas before, in the early days I could go for two years without one, but this narrowed down to much less than a year.

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 SarahLonglands » Fri Mar 07, 2008 9:14 am

Mac, leave it until next year and I'll meet you and hopefully Nancy in Paris :)

Its just one train connection away now.

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 Loriyas » Fri Mar 07, 2008 1:22 pm

I have posted a reply to the "cult" comment 3 times and then deleted them. I couldn't decide how best to address this, as I found it annoying and offensive. As many know, I researched this protocol to death before deciding to proceed. I learned as much as I could and appreciate the help I received from those who have done the protocol before me. After all of that, I made a trip to Nashville to see the doc at Vanderbilt who prescribes this therapy. So my decision was not because I wanted to follow a "cult" but because I found solid evidence that this was a viable therapy. I decided to go ahead a post this reply because I don't want anyone who may be looking for alternatives to the standard therapies to shy away from this therapy because of negative comments. As we have discussed over and over again, what works for one person may not work for another. All you can do is try to see what will work for you. This site is for education and support. It is not helpful to belittle what others choose to do. Sorry for venting but this got on my nerves!
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Postby SarahLonglands » Fri Mar 07, 2008 4:56 pm

Lori, it happens from time to time, but to my knowledge we have never been called a "cult" before. It's sad, really, because cults are out to use people, rather than help them. In the same way that "snake oil salesmen" are out to make money: never the case with the docs involved here! You, after all, know how sweet and caring is the Professor in Experimental Neurology at Vanderbilt.

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 MacKintosh » Mon Mar 10, 2008 7:23 pm

Sarah, I agree on the pseudo-exacerbations. I am on day ten of the proposed flagyl pulse and am experiencing a few things I experienced when first diagnosed with MS. Someone without experience (or perhaps without faith in the protocol) might be frightened by this, and if the symptom was particularly scary, they might even back off the abx.

I know, however, that we will occasionally have these MS 'memories', especially when on flagyl. The killing of cpn results in inflammation and the inflammation hits those spots where the disease used to slam us. My visits to the forgotten MS symptoms are so rare now and so mild, that I know the bug is nearly gone, even from the spots it apparently had hit hardest.

Ken, your observations are incisive, as always. Your sense of humour is a welcome noise, as well. We knew you'd be back to being yourself once Kim got the help she needed! This disease takes a toll on more than just the victim, hmmm?
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 » Tue Mar 11, 2008 6:29 am

Mac, I think some people have been frightened off by this very thing. My left leg once went numb right up to my knee, first noticed on kneeling down when assembling a stretcher. This only lasted a few hours then proceeded to move around my leg for a few days. My first recorded MS symptom was a numb left thigh. This leg is my best one and is now perfectly fine. It could run again if my right leg would let it.

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 SarahLonglands » Sat Mar 15, 2008 12:11 pm

In response to Ken's (Notasperfectasyou's) comment:

What’s interesting to me is that much of the side effects of CPN die-off could easily be confused with an exacerbation. Weird crap can happen in an exacerbation and die-off isn’t to terribly different. It seems to me that both are grounded in inflammation brought about by one thing attacking another thing in the CNS. Along this line of reasoning, I think this is a problem for folks in the “learning” stage.


Robbie asked:

In people with rr ms is there a difference in an mri that is taken during a relapse as opposed to one taken during a remission and if so could this be used in a case like this to determine weather it’s die off from abx or it’s ms causing these conditions.


My experience here is relevant: I had progressive disease with relapses and became an open-ended add-hoc trial of one, performed by the radiologist and my husband, the microbiologist. To this end I was given four MRIs over a two year period, charting improvements or otherwise. The second MRI in this sequence was done somewhat after six months, and at very short notice. This was because they wanted to use the same machine and the same radiographers each time and this had to be fitted in around all the other hospital business. The result was that I was nearly at the end of a flagyl pulse when told I could have the MRI the next day, so I stopped the pulse immediately and was incredibly worried because I was experiencing the only real reaction to the drug that I had gone through. I was experiencing pains in my still coming back to life right arm of bone breaking intensity. It was reflex sympathetic dystrophy, a neuropathic pain with its roots in the central nervous system, not the peripheral nervous system. Of course I was worried what of this might show up on the new MRI.

I needn't have worried because nothing new showed up at all, only the fading of intensity of the newer lesions which had still been active at the time of the previous scan. This was repeated six months later, with even more improvements. The same six months on again, although this time I had more reason to worry because I had been kneeling on the floor of my studio and discovered that my left knee was complete numb. I was due for the scan two days hence and having become somewhat blasé by this time, I was halfway through a flagyl pulse, despite being on intermittent therapy by that time. The numbness in the knee had stopped by the time of the scan but it was reappearing in various parts of that leg and this continued for another week. All that was found new this time though was that some of the most recent lesions had actually vanished.

So twice I had what many people might have taken to be a relapse, both times I was taking flagyl, but it didn't show up at all on the scan.

So from this all I can say that what I thought was a relapse wasn't, so when you suddenly deterioate during a flagyl pulse and only then, you can be pretty sure that its the flagyl, not the MS.

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 SarahLonglands » Mon Jun 02, 2008 9:31 am

When I first started painting with oils again I had forgotten quite how long it took before something was ready to put on-line. Not a matter of just finishing the painting, but then waiting to be able at least to put retouching varnish on, because a completely unvarnished painting can look so streaky, some colours drying much more mat than others.
So I decided to post this work in progress, whilst incidentally wearing my colour matched sweater and colour matched jeans as well judging by what I have streaked across one pocket.. The angle of the painting and the total lack of sunshine today hides the uneven-ness of the finish so this does show that I am doing something. It also shows an unintentional result of the treatment, having lost about 18 lbs in weight since January without even dieting. I'll buy some better fitting jeans when I have evened out, but meanwhile, these are only old painting things.

I am so glad that I am able to paint with oils again and I have so many ideas waiting to burst out. I am also going to do some adjustments to the big acrylics I started with in 2006, by glazing over some of the less satisfactory colours with oil glaze. Don't worry, I won't spoil anything: I've done one already. I just hate acrylic greens and blues and reds and.....................


Image
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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