1st followup since dx

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

Re: 1st followup since dx

Postby Anunymouse » Tue May 05, 2015 7:41 pm

To be honest. I realize I'm being incredibly petty and self centered In this and I'm going to knock it off.

It depends on the day really. I don't feel as just run down since i stopped the antibiotics. I slept badly last night so I'm exhausted today. When I'm tired i feel a little screwy. I feel better and pretty normal at night and .when I'm at the gym. Usually after the kids and wife are asleep, which leads me to believe a good chunk of that is stress and mild depression.

I think it boils down to this.

For the first time in my life, im scared.
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Re: 1st followup since dx

Postby Anunymouse » Thu May 07, 2015 11:17 am

Going over the most recent scans, this is I believe what she's talking about. I need to go through the old ones myself and compare. The next go round is of the spine as well, the damage there is what sent me to the ER thinking I was having a stroke and is more of an immediate concern to me overall.
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Re: 1st followup since dx

Postby ElliotB » Thu May 07, 2015 11:25 am

You may be putting too much emphasis on what the MRI tells us. Ultimately a MRI is of limited usefulness as you can have symptoms without lesions and you can have lesions appearing on a MRI and no symptoms.

I had an excellent MRI a year ago (no new lesions) yet shortly after I had a minor relapse. Needless to say, I have decided not to have any more MRIs.
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Re: 1st followup since dx

Postby ElliotB » Thu May 07, 2015 12:48 pm

Someone posted this link here recently. I don't know if you saw it but it certainly helped changed the way I feel about MRIs.

http://www.msdiscovery.org/news/news_sy ... -meets-eye
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Re: 1st followup since dx

Postby Anunymouse » Mon May 18, 2015 10:36 pm

On the upside my pc has a ton of pictures scarier than anything hollywood can put out:)
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Re: 1st followup since dx

Postby Anunymouse » Wed Aug 26, 2015 2:20 pm

Back to my personal log. I went cold turkey from the antibiotics a few months ago as noted earlier. As dumb as it sounds the psychological beating from the daily regimen was getting to me, the monthly pulse had gotten to me as well. I was basically feeling ok until the pulse and then I would feel like garbage from about day 3-4 to 5-7. And summer was approaching, I spent last year hiding from the sun because of the reactions I was getting from the Doxy. For the most part I went through the summer with nothing new except being able to be outside. We get very little summer here in the first place, most of the year is either winter or going into/out of it. So not being trapped inside for a few months is a good thing. I did pretty much stay on the NAC, missed a day here and there but in general 2 in the morning and 2 at night.

Unfortunately, several weeks ago I started just feeling uncoordinated mainly in my left leg and my right hand was getting slow mainly in my pinky and ring finger. Both are old symptoms that were flaring up. Walking uneven ground was irritating, it felt like I kept dragging my heel and stomping around instead of walking. It didn't seem to be improving on its own and I couldn't directly attribute it to overall fatigue throwing me out of whack. So about 2-3 weeks ago I went back into my stash and started on the anti's again. And because I am who I am, no easing into it just back on full course and dosage. Day 3, felt like I'd lost a fight. I was just all around miserable but it started easing and by day 6 it had passed. Since then I'm moving back towards 'normal'. My leg isn't back to where it was yet but noticeably better than a few weeks ago, except when I'm just in the dirt tired. Even then it's still better. So things are trending in the right direction I guess. I haven't decided if I will go another full year or just do 6 months and then do a taper/maintenance routine for another 6 instead of just pulling the plug again.

My current life plan, we're relocating to Florida by next summer. I'd dearly love to be able to be outside without turning into a giant rash by then! But I'll see how things go. My next neuro appointment is in November, so the next set of scans I'll have been back under the protocol for a few months. I'm curious how things will look.
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Re: 1st followup since dx

Postby MacKintosh » Wed Aug 26, 2015 3:14 pm

Instead of (once again) setting an arbitrary end-date, why not simply take the antibiotics until you're sure you're done? I'd planned on 'at least a year, then let's see how it goes'. I still felt I was getting additional benefit til around five years, which I was fine with. Better to keep improving than to get a temporary respite, backslide and have to repeatedly start over.

Do it once, do it right and never have to do it again, is one of my beliefs. I usually apply it to construction, but I also apply it to my life.
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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Re: 1st followup since dx

Postby Anunymouse » Sun Aug 30, 2015 11:52 pm

Mainly to have a goal i guess. Run a marathon and youll find yourself saying only 2 miles to go, only 1 and a half mile to go... i can do this, only 1 mile... but take the finish line away and you're trapped in a stephen king novel. (The long walk, its a good read :) )

I started with the goal of no matter what staying on until my next mri and evaluating, after that i moved the goal another 6 months. By then i hasn't really felt or seen a difference for some time. So after that the popular "when am i done?" question starts creeping in. So my next appt is in a few months, hoping to one again irritate my neoro :)
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Re: 1st followup since dx

Postby SarahLonglands » Mon Aug 31, 2015 1:00 pm

If you changed to intermittent protocol which I did after a year, most of the time you won't be taking doxycycline so won't have to worry about turning into a giant rash in the Florida sun!

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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Re: 1st followup since dx

Postby Anunymouse » Wed Sep 02, 2015 11:06 am

That would be nice. Even without the doxy reaction the sun at my elevation hurts, not just me, it's a common complaint. We have people that spend all day every day in the sun down low, come here and complain after 15 minutes. It's pretty harsh is what I'm saying, it stings even through sunscreen when I'm on the pills. I was in Barbado's during the height of my antibiotics regimen, on the beach all day every day and never had an issue and was pretty lax on sunscreen.

What's the general intermittent schedule? Since I bypassed it last time, besides knowing its suggested I didn't look further into it.

FWIW, fingers in my right hand are pretty close to normal, left leg is getting there. Feels kind of funky but in that somethings going wrong level. But since it's coming back, more of the something's going right level I guess.
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Re: 1st followup since dx

Postby Anunymouse » Thu Sep 03, 2015 12:59 pm

Aaaaaa! First flagyll this morning. I completely spaced out the taste I have to look forward to 24/7 for the next week, until it touched my tongue...
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Re: 1st followup since dx

Postby SarahLonglands » Fri Sep 04, 2015 4:16 am

Haha, difficult to down it and avoid your tongue!
Look up David's site for information about intermittent but after a while you can space it to suit you, if you are sure your reactions when taking flagyl have finished. apart from the taste of course: that never goes!
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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Re: 1st followup since dx

Postby Anunymouse » Thu Oct 01, 2015 3:27 pm

Nothing new to add, just logging for myself. Started pulse 2 this am with the loud announcement "A week of suck, begins today!" And I switched from doxy to mino about 10 days ago. A little intestinal distress but otherwise uneventful. Taking 1 small pill vs 2 larger every night isn't a bad thing in itself. Leg is a little hit/miss, similar to a year ago, still trending in the right direction. Except when I'm at the gym, feel pretty darn good when I'm working out.

Arm/hand is pretty much normal. I have another round of MRI's scheduled for next week. I broke them into 2 appointments so I'm not stuck in the machine for so long. Another Bday approaching, that's mildly depressing. Throwing the neuro visit on top of that, I'll probably need a drink :)

Unrelated, actually watched my first eclipse the other night. The rare combo of the moon being closest to the earth, full eclipse, and blood moon all at once. Pretty cool. Every regular one I mean to watch but always get sidetracked.
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Re: 1st followup since dx

Postby SarahLonglands » Sat Oct 03, 2015 4:07 am

I've got some good pictures of the eclipse on my Facebook page if you would like to look?
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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Re: 1st followup since dx

Postby Anunymouse » Wed Oct 07, 2015 9:56 am

I would but I don't do facebook. I tried it a couple years ago and it just didn't work well with me, too much farmville :)

2 MRI's yesterday, thoracic and Cspine. Brain is friday. Looking at the spine, I don't see anything that jumps out at me. But then again I never do :laugh: Off the pulse for the 2nd day, looking forward to not feeling quite so bad and this taste leaving my mouth.
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