Submitted by mswillow on Sun, 2006-01-15 20:04

It seems my all-body aches have gone away, and even my achey right arm is calming down. I'm now able to wash my face and brush my teeth by myself. I can stand, for a while, and transfer into and out of my power chair on my own, tho it takes some time. My typing is vastly improved over last August, and I'm on track to get back to cutting gems again by April. I'll keep on improving from there.

I'll re-start Flagyl in February. I'll also switch to azithromyecin then, too. Flagyl wasn't too bad for me, but it might get bad now that I'm really hammering at CPn in all stages of life.

Just thought I'd post about the progress I'm seeing, for those who only see the bad side of the treatment. It works. Slowly, but it works.

Willow,

Thank you for an optimistic update, a while down the road from Lee, who will be along in a bit, I think.  You are certainly more upbeat than a few weeks agp.  Are you doing maintenance physical therapy?  So important.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hey Willow, good news! Thanks for posting it for everyone else. Washing your own face and transferring and brushing teeth. That feels good I bet. How long has it been since you cut gems? Are you a gemologist or is it a hobby for you?

These kinds of improvements are important for us to document for others. Maybe Dr R is coming on this site wondering should I prescribe for other patients if they ask me? If so he needs to see these kinds of objective signs of improvement so he can have some grasp of the kinds of improvements we are talking about. I know my doc is here though anonymous and she reads this stuff. She knows about me of course but you others are an interesting story.

just so we all know;
Objective means somehting others can see for themselves "patient can walk 50feet without a cane"
subjective means what the patient thinks is true "patient says she walks better"
The subjective is often belied by objective findings for example "patient says she walks better. On treadmill she walked for 1/4 mile. One year ago she walked 1/2 mile on the treadmill."
Obviously if you read the above, it's hard to know what the patient means when she says she walks "better" In fact it appears she's lost ground. If this is a clinical tril her input about how she thinks she walks is interesting but irrelevant really. The fact she objectively lost ground is notable and important though. Since trials are few and far between for this treatment keeping our posts clear and measurable and objective when we can is a wonderful gift.

Thanks willow for the great post! Can't wait to hear you are cutting gems again!
Blessings
Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

For me, gem cutting is a hobby / obsession :) I stopped in July, when I could no longer hold the stone-on-a-stick. About early August, my dexterity vanished, and my typing was done with one finger and my whole arm to control it - about 1 wpm, tops, with many mistakes. Now, I can type with all my fingers on my left hand, at over 12 wpm with mistakes corrected. In August, I couldn't hold a toothbrush. Since then, I used a foam holder to do a lousy job, and have now returned to using the toothbrush bare, and doing a good job of brushing my teeth. I've gone from not shaving, to a foam-grip razor and a lousy job, to now using a normal razor and doing a passable job. I can now even use a normal spoon and fork to feed myself, and can probably even prepare a simple meal.

Not getting any PT currently, but I am doing what I was told to do, stretching, bending, wriggling toes and fingers. It seems to be helping.

Aggressive SPMS, EDSS 9, on CAP since 2005. Doxy 100mg 2x/day, Azithro 250mg MWF, NAC 2400mg/day, Metro 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

MSWillow--Hey, great news!  I have been reading everyone's posts, including yours--they keep me keeping-on....especially your most recent.  Makes me realize that I have gotten better also[started Wheldon Oct. '05]

Just tonight, I had enough energy to go to the pharmacy for a few things.  Two months ago, I would've sent my son instead, so I know things are getting better.  Sometimes I think the recovery is so insidious that many days of improvement pass before I realize it.

 

Regaining our independence is right up there with getting our health back-So glad to hear your news!

:)

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Willow, I am so happy for you!  I was so worried when I saw your "taking a break" posting because I knew what might happen.  Thank goodness you headed all our cajoling.  It is a difficult thing to be getting better so publicly.  I just kept myself to myself at first until I realised that other people could be helped, so I was over the worst before I said anything.  Everyone now either has to come out or lurk.  You are doing a wonderful job which should encourage others to follow on.  Thank you and thank you to Marie as well......Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

MsWillow!  Congratulation! Keep posting.This is really a wonderful place for all these unhappy souls coming here to see that this disease is not untreatable. Everybody should try the antibiotics before any other therapy.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.