Submitted by boadicea on Fri, 2014-09-12 16:47

I’m absolutely convinced that glimmers come along with one purpose in mind – to give us a taster of the possibilities, in order to keep us going.  I’ve had a rough time for the past 10 weeks, since the last pulse.  I was especially fed-up with it all last week, as I’d planned to go away for a few days, but it wasn’t looking hopeful, as I was feeling too poorly to even get out of bed.  I was starting to lose hope and couldn’t face the thought of ever pulsing again.  But then, by some miracle, I did manage to have my few days away.  And I’ve come back with so many glimmers, that I really feel I need to share them.The main die-off and inflammation from the last pulse was in my brain.  I’ve had what I’ve always described as ‘a pain inside my head’, on and off, for the past 25 years.  It’s a very specific pain, in a certain place, on the right side.  It’s been revisited from time to time since I started CAP, but this was the first time it’s been so constant and overwhelming.  That continued for about 4 weeks, along with trigeminal neuralgia and pain inside my right ear.  Weakness returned in my left side and walking wasn’t so good again.It overlapped slightly with revisiting of the Interstitial Cystitis symptoms.  I had that about 5 or 6 times a year, from the age of about 13.  It disappeared the moment I started CAP and this was the first time it had been revisited.Then I started to have night sweats – I’m used to this and I think it tends to be one of the ways my body uses to detox.  But this was far more extreme than usual, as I was waking several times every night, with both me and all the bedding completely drenched.  And next came the chest infection symptoms.  I’ve had some die-off in my lungs before, but this seemed to be a mass suicide of the bacteria.I wasn’t able to go away when I’d intended, but the minute I felt a bit better, I went off for my few days at the seaside.  I knew some sea air would work wonders, as it always cheers me – and knew that I would be miserable beyond words if it turned out to be another thing I had to miss, as there seem to have been too many of those this year.The crutch which I’d so much been relying on to walk hasn’t seen the light of day for the 3 months – condemned to a life in the car boot, just in case.  I don’t wish to tempt fate!  My walking has gradually been getting stronger and balance improving.  But even I’m surprised by the amount of walking I managed to do the last few days.  Miles!  Yes, it was flat and straight ground, and I still need to concentrate all the time on my walking and remembering to strike my heel on the ground properly.   And yes, it probably did help that I was by the sea and in the sunshine – but this is improvement beyond anything I would have ever imagined possible when I started CAP. I was visiting places I used to go to regularly, but haven’t had the chance to go to for the past 3 years.  I remember all the times I’ve been there, longing to go for a walk to the pier or along the promenade, but just couldn’t manage it.  I think it must be about 10 years since I’ve been able to do the walking I did this week.And another glimmer:  I was able to walk on the pebble beach.  My balance has always struggled with that.  And, after walking on the pebble beach and then on the ground, I realised something.  I could feel the ground under my feet.  I’ve not been able to do that since the neuropathy symptoms increased, about 7 or 8 years ago.And, not just a glimmer but perhaps more a bright shining light – I climbed the 169 steps to the top of this lighthouse:  http://www.dungenesslighthouse.com/index.php OK, it was probably more down to stubborn determination than anything else and I’m not sure there’ll be a repeat performance very soon.   I’ve struggled with stairs for years.   But it’s so rare for me to feel OK, I think I saw this as a special treat – a reward for the not so good bits of CAP.  I love lighthouses and this was the first time I’ve ever been able to go to the top of one.  It had to be done!  And it felt good!!!In many ways, I seem to have spent more time feeling more ill this past 12 months, than ever.  Every time I feel OK, it doesn’t seem to last more than a few days before I again become shivery, fatigued, and then more die-off, pain, inflammation, toxins and porphyria.  It would not look, to a casual observer, as though I’m making good progress, or any progress.  I think it’s generally expected that recovery will be a linear process, bit by bit feeling better and regaining function.  I’m finding CAP is the completely opposite.  Loads of feeling worse, lots of steps backwards for every few steps forward – but, whilst that’s going on, whilst you feel too ill to notice, amazing things happen.What was it I said about last week, feeling as though I couldn’t face the thought of ever pulsing again?  Well, a metronidazole tablet was swallowed a couple of hours ago!  

jam

A  positive email that some of us need at  the moment so thanks for that.  May the glimmers be more frequent.  Good luck.

 

Jam

Brilliant news! It really proves it's working. Well done!

Trent

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

That is such good news and you so deserve it, we are both so happy for you.

Best wishes

TandT

Optic Neuritis in teens. Diagnosed spms in 2001.

Started suppliments in Feb 2014 in readiness for ABX.

Started Doxy 17-04-14, Roxi 25-04-14, Full Doxy 02-05-14.

Started Tini 16-07-14

169 Steps...That's AMAZING and deserves a big WOO HOO!!Image removed.  Very inspirational!!  SO HAPPY FOR YOU!!

FM/CFS/IBS/Reynaud's/suspected Lupus and many neuro problems, disabling muscle & joint pain and weakness.Started CAP 4/10/13 - Doxy 100mg bid/Clarithromycin 500mg bid/NAC 1800MG per day/Flagyl pulse 500mg bid once per month,All supplements

I totally agree with Healthygirl: 169 steps!!  I love lighthouses as well, especially tall ones.  I'll bet you couldn't do it today, after starting another pulse, but you will be able to soo, and faster!............................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.

I've had a truly miserable couple of weeks (not MS/cpn, just life) and you have managed to cheer me immensely with this report.  I am beyond happy for you!!!!

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 ...

They say that grown men shouldn't cry!  There are so many times that I read post on here that make me well up and my eyes fill with tears.  When people are watching me I say it's hay fever or it's another bloody cold coming on - but I lie.

The world abounds with sadness, misery and hurt.  I, in common with most, have become almost immune to it.  The grief that bathes our planet should bring on enough tears to drown the cries of the Human Race ... but they don't.  We just get on with our lives.  So why, when looking at these pages, do my eyes fill with tears?  Am I sad?  No!  Not at all.  These are the tears of joy and relief.  When learning that Trent was turning the corner after being ill since 1974, out came the hankie.  When I learnt that Terri of T&T had started to turn the corner, I had that same feeling.

Bo, your journey along this rocky road called CAP has neither been kind nor understanding.  That you have been a rock to CAPers this side of the pond and way beyond,  hadn't seemed to bring you any special favours.  Things for you within the CAP protocol have been harder than most could take.  Things outside of the protocol could not have been harder - the power of The State and The Establishment flung against you.  All of that ... and you kept fighting!

So, you managed to get away for a little holiday by the sea-side. I am so glad.  I am glad that you caught the very best of English weather too.  I spent may happy childhood days in the area that you went to.  I used to ride the Romney, Hythe and Dymchurch Railway.  I took my kids there too.  I remember the windswept pebble beach at Dungeness but I've never climbed the light house.

When you describe your walking and the thing that you've done, it's amazing.  I clicked the link in your post and opend the picture of that tall lighthouse.  You climbed to the top of that and then down again?  This is the Bo that was stuck in bed?  This is the Bo that could barely make it up the road to the shop?  This is the Bo that would look in the mirror and could only see despair?  You walked all that way; you walked to the top of the lighthouse and back down again!  Now can you now understand why my eyes fill with tears?

Anyway, glad you got away ... and great to have you back!

Image removed.

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

I will go to bed happy now: goodnight!.............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.

Sounds like you are seeing results...

 

Kind of makes it worth all the hard times doesn't it?

Three steps forward... two back... two forward... two back... one forward two back... two forward one back....

My husband always had to remind me during the bad times on MP or just of my CFS how much fighting I've done already...  This bad time is only the current battle... the big fight is still happening and I need to endure to see the result down the road...

Started NAC Sept'14... 100mg Doxy Dec'14...  Roxi 13Dec '14 Supplements...

 

Wonderful news.

I needed to hear such good news as I feel as if i am not getting anywhere but now i know i justneed  MORE patients.

congratulations.

MS Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxy 13/10/12, started roxy 06/11/12, increased doxy 28/11/12. first metro pulse 01/01/13. Tini Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NAC,ALA,AcetylL-Carnitine,Fish oil,

CONGRATULATIONS Bo!  I am ecstatic to read this. It is hard to imagine having a Tini in your hand, knowing it is going to make you feel miserable and purposely putting it in your mouth anyway. You did it anyway, and have been doing it diligently with true grit and determination. You so deserve this reward. Thank you for sharing with all of us. I don't know what qualifications you need to meet to be included in the success stories, but I'm throwing your name in the hat. Maybe Mackintosh can make it official.  Either way I'm coming back to read this when I need a boost. Good on You Bo!!!!!

 

Julie

 

MS: First sx '93 dx '09 no obvious relapses just steady decline since '07. Crippling fatigue, too weak to sit up for extended periods of time. Cane/walkers/electric chair inside, helicopter outside. Started protocol 11/16/13.  1200mg N