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Posted: Fri Jan 02, 2009 4:32 pm Post subject: Wallwalker's antibiotic log
Hey! I've just commenced antibiotics for SPMS and thought it might be beneficial to me, and possibly those in search of a path, to document the process. Have followed Anecdote and Loryias? stories but have found the Grail of progress difficult to follow in others. This is not a criticism simply highlighting my particular needs.
This may then help others choose and will be in point form- professional habit.
I am a 45 year old physician- semi retired
MS 25 years ago in med school- brainstem, then RRMS for 10 years- minimal changes
Broke leg skiing in 2000 along with divorce and developed footdrop- first motor manifestation. Up to then visual, tingling, fatigue etc
NOW: Weak legs, walk short distances with sticks, buggy to shops. Beginning to have weakness in hands. BAD restless legs, tingling all over, fatigue and foggy days.
Live alone (ladies) and get by.
Tried Avonex, diets, LDN and Aimspro- big on mind body generally happy but not a "MS gave me.... " type.
Read about David Wheldon, assured by a friend who used to work with him that he is not clinically insane, and here we are.
Regime:
K-PAX vitamins- expensive but seem to have most of whats needed (take extra NAC)
Doxy and Azithro (private prescription)- 3 weeks
Simvastatin
Plan first short flagyl pulse tomorrow- happy days!
I plan to update fortnightly unless there are big changes- feel yuch or I change my name to wall jogger, wall gymnast or heaven forbid carpet muncher!
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Fri Jan 02, 2009 11:29 pm Post subject:
Oh, I like you already! Read my posts, if you want another success story. Three years and three months of abx and I'd call myself 98% cured.
DW isn't clinically insane, but I understand your reticence. I thought Sarah's story was too good to be true and I researched both of them to reassure myself I wasn't grasping at straws.
Will send you a private message, as well. Best of luck as you begin the trek. You'll be 'former' wallwalker one day and we'll celebrate. _________________ 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
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Fri Jan 02, 2009 11:38 pm Post subject:
P.S. Don't go overboard on the first flagyl pulse. Start small, in case you really kick some cpn tail and, consequently, knock yourself on YOURS. You're ramping up awfully fast and the cumulative die-off effects can come on very swiftly and heavily. _________________ 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
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Sat Jan 03, 2009 9:29 am Post subject:
Goodness what a start to the new year! Since you have been assured by your friend that David is not clinically insane, something that I think some of the managers at his hospital might differ with, have you written to him? He will willingly give you advice on any questions you may have. You can find his address on this page, near the bottom:
As Mac said, though, do go easy on the flagyl at first. I did five days at full dose from the start, but only after three months. Even then I got aches that I never knew I had, so best of luck!
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
Wallwaker
I started the protocol in January of last year. January is a great time to get started as it is a new year with a new plan! I wish you all the best in beginning this journey!
Lori
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Mon Jan 05, 2009 4:04 pm Post subject:
Congratulations on finding the ABX protocol!
Kim has been on it for nearly a year and I'll have a post soon regarding her first followup MRI. I'd also appreciate any advice on making my thread more helpful - the purpose of the thread is to be helpful. A fresh set of eyes is always helpful. Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Ken
I guess what would look for is what actual improvements have occured-physical as well has psychological. What benefits have you seen? These things get buried in these strings- as my original idea has already been swamped. Best to keep journal maybe. Be well
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Tue Jan 06, 2009 3:37 pm Post subject:
Thanks Wallwalker,
I actually posted a one-year summary today. I agree with your observation. There is static there. I'm also trying to capture the small things we run into in an effort to be complete.
Thank you.
Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Nothing major to report and feel over analysing symptoms every day is rather counter productive. On the down side spasticity has become significantly worse- this was deteriorating before Abx..... Bladder a tad twitchy despite anticholenergics. Still wall walking but no carpet munching!
On the up: went to funeral and was told "how well I looked," and "they didn't expect to see me out." Cheeky b@$£^%* hasn't held a job down for years but still.... Generally sleeping better but this is cyclical.
Took flagyl for one day, carefully as recommended by my family elders, restless legs went crazy. Cpn know my weak points! David kindly suggested I hold off but am keen to get involved with a little genocide
Did feel rather well 2 days later but could have been cyclical. Needed to do it to validate the procedure.
Patience....
Is it me or are there a significant number of people leaving the programme because it hasn't worked (Frank et al). Kind of disconcerting and could make me stroppy Mac!
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Thu Jan 15, 2009 9:06 am Post subject:
Flagyl already!
Sounds like you're doing ok. It's not that folks are dropping out, but many have moved their "threads" to the CPn site. Sometimes I feel like an outpost here at TIMS, but I feel very connected here and Cpn is moreso where Kim blogs.
I think it's fair to say that ABX is a commitment and sticking with the plan is key. It really is a rollercoaster, like stockmarket highs and lows. People react emotionally to stock market plumets and begin to question their judgment. This can happen with ABX too. Ciao, Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Joined: Jun 18, 2004 Posts: 1725 Location: Bedfordshire UK
Posted: Thu Jan 15, 2009 9:24 am Post subject:
I would agree with you that overanalysing symptoms every day is rather counter productive, especially since one day you can feel wonderful, the next day crap. As far as spasticity goes, though, you can expect it to be worse for a while and this, I think, is why some people give up. They expect to experience nothing but a steady stream of improvements from the word go. I'm not including Frank here, by the way. He decided to try abx because of the tysabri debacle. When it was reintroduced he started it again but found he was doing better on it this time round. The antibiotic interval might have something to do with this.
Other people give up when the toxic clouds clear and they prefer to be foggy: the cold light of day isn't pretty. There are many people doing well on abx who no longer post here. They can be found over at www.CPn Help.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
I am still posting on both sites, usually duplicate when it comes to the protocol. And I am definitely doing better, not worse. This is the site where I learned about antibiotics so I would never leave it. I don't post real often because when you are in the middle of this battle there is not much to say. You just go through the process. I try to post updates after every tindamax pulse (am currently doing one now) so that I can give a recap of how the month has gone. But I think many many people stop posting because either 1) they are in the middle of it so don't have a lot to say or 2) are recovering and so are getting on with their lives. That part is too bad because their experiences would be so helpful. But it is totally understandable and natural to move on once you feel well.
Be sure to ask any questions you may have as that may get some people to respond.
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Fri Jan 16, 2009 7:34 pm Post subject:
Hey, I'm still here! Three years, three months on abx and about 98% recovered, I'd say.
I agree about not chronicling daily. It's like dieting. If you get on the scale every day, you'll depress yourself. It's the accumulation of benefit that counts, not the up/down push/pull. You'll make yourself crazy, doing that.
Basically, I decided to do the protocol and put it out of my mind. One foot in front of the other, never mind the scenery, just push forward. It's worked fine. If I have a 'bad' day, I remind myself of my own advice to everyone here and on CPn Help; it's die-off and it will pass. _________________ 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
Hey, I think we're 6 weeks in- azithromycin, doxycycline and K-PAX supplements. All I have to report is an increase in spasticity ++ Had a brief window for 2 days when I dared to dream, but again crashed and burned. Not gonna stop the antibiotics, this is the last chance saloon after all but frustrating despite being able to apply a science to the symptoms. Its difficult to determine whether this spasticity is a result of herxing, working on Powerplate or whether am in a natural freefall. On it goes, brush myself down etc.
Question to Elders, how about starting flagyl at 2 months, whats to lose?
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You're ramping up awfully fast and the cumulative die-off effects can come on very swiftly and heavily.
