This Is MS Multiple Sclerosis Community: Knowledge & Support

My goodness, you have been unwell and due to something that is supposed to alleviate you MS symptoms! I have heard of this happening time and time again when people try something like baclofen: if you don't get the dose right, it stops the spacticity, yes, but makes you so weak you can 't do anything.

But then I don't need to tell you this: you are the doctor!

So, with sunny days coming, now is the time to stop feeling sorry for yourself and get on with the job in hand.

Sarah

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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.

Mas YUCK! You deserve a break! You just confirmed my reasoning for not doing IV antibiotics. Slow and steady beats this bug. Over-kill of cpn results in, well, overkill.

Feels good to be back in your own bed, doesn't it? May your next few days be a distinct improvement over the last batch.

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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, take awhile to recover from my recent hospital experience. Walking is poor despite foot up splints. These unfortunately exacerbate my restless legs and may need reviewing. Finally found the energy to start another pulse yesterday- immediately warmed up my feet last night and sweating. Interesting n'est pas? WIll keep in touch

WW

Have you tried upping your magnesium intake for RLS? I find that it does help me - but then so does the CAP and the LDN, so who knows? The downside of magnesium supplementation of course is that it can give you the trots.

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Progressive MS dx. 12/06. Currently on CAP for CPN: Wheldon protocol. LDN 4.5ml.

Ha, you've found this as well! It certanly does help with RLS though......................Sarah

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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.

Had a terrific 2 days, standing upright, showered, shaved etc in almost "normal" time. (walking not great but happy to strengthen my core initially). Aching today and back to square 1 which is ok...... ish
Question for the "elders". Had no problems with this pulse- on my 5th day. Should I stop as planned or continue for a while longer?

Regards Wallwalker

I vote for stopping. Don't push, don't overdo it; delayed reaction could still hit a few days later.

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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

I also vote for stopping if only because going for more than five days might make you seriously depressed: it did me!

Sarah

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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.

Thanks. Metronidazole stopped. My bowel flora thanks you. WW

Just an update. Just started my 3rd pulse. A little stiff but no great difference. One has to remember that metronidazole can make anyone- CPN or not- unwell. Notice my hands and feet get warm which is nice.

Don't want to be negative (God knows I want this to work) but the purpose of this log is to inform people of whats happening to me. I continue in freefall, gradual deterioration. I now have difficulty walking short distances with elbow crutches and increasingly use my electric buggy. This is affecting my self esteem and whilst not clinically depressed I am a little flat.

We are around 5 months in, with a short 2 week break when hospitalised. I will continue- what else is there and hope change will come.

Wallwalker

There is someone with PPMS called Katman who occasionally comes here but more often can be found on CPn Help, who was in freefall for nearly a year before she stopped progressing so there is certainly hope for you yet.

I'm glad you mentioned that metronidazole can make anyone feel unwell. Even when I took my final pulse before finishing treatment, tinidazole had this effect on me so I was so glad to be able to finish. Nearly three years on now and I am still showing gradual improvements.

Sarah

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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.

OK update.
Just finished- I think 5th pulse. No side effects/reactions, is this a bad sign? Could it be I have no CPn on board causing my symptoms. Still in freefall which was exacerbated by UTI 3 weeks ago. So still wallwalking- but only just. Stuck in the shower last week which was a major event at the time!

Be well

WW

What do you mean? Nearly able to forget the wall or nearly not able tom walk at all? Whichever, the heat and humidity at the moment has probably exacerbated your symptoms as much as the UTI: even I, nearly six years on from starting abx, have felt it.

I also stopped having reactions to pulses after, my sixth one, I think, but I still carried on improving. Apparently other people don't even stop going downhill until nearly a year or even longer. Ask Katman.

Sarah

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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.

Thanks Sarah, absolutely, heat has been a nightmare. Walking is difficult. Have had chat with Katman- inspired to continue and have just received another 3/12 supply of antibiotics. Be well WW

Have been reading Lori antibiotic log and the "great fogettery" was mentioned. Lori also mentioned headaches. I realised I haven't had a migraine for sometime- long time, and it was relatively mild. Its the only thing I've noticed (consciously) thats improved but I can hold onto that! I also realise that my symptoms were a lot worse than Lori's when I started. BW WW