Submitted by boadicea on Sun, 2015-05-17 17:21

I’m always a bit reluctant to shout too loudly about the good bits, as they so often have a tendency to disappear again the next day, seemingly shy at being spoken about.  And I’m always a bit reluctant to mention the not so good bits, because I prefer, instead, to keep telling myself that surely all of this will become a whole lot easier any time now – as I still wait patiently for that to happen! It is 4 years this week, since I started taking the antibiotics – and I still find it the most baffling, bewildering and amazing process, mainly because progress does not happen in a straight-forward linear way, as we would tend to expect and hope for, but with ever increasing ups and downs, with most improvement happening whilst other things seem to be worsening, causing us to look the other way.On a day to day basis, it’s still a struggle, especially as I never know from one day to the next how I’m going to be, and herxes are never far away, waiting to pounce the moment I start to enjoy feeling well.  But, if I look at things year on year, well, there can be no doubting that good things have happened.I had a lot of die-off in my brain a few months ago, which does seem to have caused my brain turn to jelly.  There are lots of cognitive problems and I especially struggle to put thoughts into words – so apologies for being quiet so much of the time!But the good things which I want to report, for which I thank all who contribute to this wonderful forum, without which this progress would not have happened:My walking was very poor when I started abx and continued to get worse during the first three years.  It was around this time last year that things started to improve enough for me to start walking very short distances without using the crutch.  I love going for walks and my walking has gradually been improving over the past year.  I find that every moment of going for a walk is especially appreciated now that I know what it’s like not to be able to do that – it definitely makes all the struggles worthwhile and is so cheering.  By the end of last year I was, on a good day, able to go for a walk at the park which is about 2 miles.A few weeks ago there was the greatest glimmer so far – when I went for a walk around a local reservoir, which is a circular walk of 5 miles.  I didn’t allow myself to get too excited though, just in case it was a one-off, never to be repeated, moment of madness.  But, having done the same walk again today, perhaps it’s time to share this improvement!  I can’t remember ever being able to walk that far, even when I was ‘well’!  OK, so I can only walk that distance when it’s in a straight line and I don’t have to think – but walking straight lines at the reservoir beats negotiating around the shops any day!And another positive – all the weight which I put on, during the first 2 years of abx (about 28lb), has magically disappeared this year, so I am now back to where I was when I started 4 years ago.  Happy with that!

This is an incredibly wonderful thing to read.  I believe I will dream about you and your "hike" tonight.  FIVE MILES!  You are obviously doing many things right, and have again reinforced my belief in this long, long undertaking.  I applaude you and wish you enormous rewards for your diligence.

For me, the story is also long, almost eleven years now, but it is so worth it, something I repeat over and over.  The rewards are, as you say, small and fleeting, but then some stay, and then they get better, and then they go away again, and come back.

Rica

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

5 miles, amazing! Congrats on making it this far along the marathon of recovery too.

--Positive Lyme test via IGeneX Western Blot, Cpn probable but unconfirmed by ELISA testing, Babesia also likely.Buhner and Cowden herbal protocols, NAC, Artemisinin, Xylitol, Lactoferrin, other supps, essential oils, sauna

Well, isn’t that fantastic news, Bo?  A couple of weeks ago you mentioned that you had done a long walk.  I urged you to post then, but I fully realise why you didn’t.  I am so glad to learn that your previous 5 mile walk was not a one-off or a fluke.

For me, I am coming up to the 2 year mark in just over a week’s time.  Many people say things like “Oh, I’ll give it a go for a year … or maybe even 18 months.”  That “How long will it take?” question will pop up in everybody’s mind after a while.   https://youtu.be/9BlsQKCN0qA

Everyday pleasures, like walking around the shops or winding your way through the market, gradually become less and less of an everyday thing and gradually fade to no more than one of those memories of things that you used to do.

It is easy to imagine that anyone that can do a five mile walk, will find the lighthouse at Dungeness a piece of cake to climb.  And this is the girl that could barely get out of bed at one time!  Hey, don’t forget that there’s You, Me & Trent due to ride that train there (I’ll get a piggy-back off of Trent when it comes to all those stairs).

Yeah, when I look back at the things that I am missing out on, I should shed a litre of tear … but I have none left.  I shall find one for you – a tear of joy – to celebrate your new-found mobility; mobility that you used to dream of but nearly gave up hope of.

Well Done Bo!

Image removed.

G.

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

―    Abraham Lincoln

It takes as long as it takes.  One day, when more is known about this disease, it won't take so long and won't be so inelegant.  But now - well, it takes however long it takes and we have to accept that.

As Katman says, it can be a long haul.  And often (as Supaguy is experiencing) it feels like you're not exactly winning the war.  But, until someone finds the magic bullet, this is the only medical option we have and we have to stubbornly stay the course.

Boadicea, I could not be happier for you!  As the 'good days' become more frequent, they'll begin to run together and become 'good weeks', then 'good months', and your life will be something to LIVE again, instead of slogging through a haze of medications and doctor visits.  I can't wait to hear THAT report!!

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

jam

Congrats to You.  

I need some inspiration at the moment and that is what u have given me.

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I am so pleased to read your news.  I am 17 months behind you and hope I will be where you are one day too.  I am so very pleased for you Bo Image removed.  Good luck that it continues more quickly from now on.

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,

Well done... More proof if that's needed that killing Cpn works!

patience and perseverance wins out always..

Mini marathon next(-:

regards

D

The Greatest Risk of all is Not taking the Risk...

Hi Bo, so happy to read of your progress after all the struggles of the last few years.  Keep going until you find your entire healing as you so deserve this.  Irene

Good grief: I am envious!............................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.

That is wonderful! Tomorrow is my birthday and I needed to here something hopeful. I lost my balance a year before I started the Cap. My leggs have gotton weaker since I started the Cap, so I'm dependent on a wheel chair, but your post gave me hope. I'm on my 3rd year of Abx.

Enjoy your walking, I hope to be enjoying walking as well in the near future.

Great news.

We are so happy for you.


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