froggy 1965's blog

54 I think -

50 done,srill not beter

So done 50 now using rampherin..not noticed much differemde but will continue for the moment.  So hoping ro be better= this has become a long and difficult journey . The abitics definateliy helped which motivates me to continue with this nitemare.  I'm sure my father has cpni, wihich he goet from his mothers I've got ms and just wish the medical connunity  would take a bit ot notice of this.  Anyway too tirrd to wright more - Beat tp all, love Suzanne

49 done changed to ramphin

ok so started raferpin - not a whole lot of difference so far but seem to have regained apperite which has to be be good, still not walking,pain in feet as gefore sill living in hope.   I hope for more improvements,  especially walking and brains seem tolive in confision - not good anyway still convin yced that I will recover its a very slow process for me  anyway best wishes to all on this marathon, love Suzannne

48 nearly over - still living in hope1

Nothing major to rport this time, however things in genaral have improved.  Still not walking but bladder control is still ok.  Cam now get up off the foor, am sure that this protocol is working - just v slow which I know now is connected to chamo I had bacl in 2003.  Have seen several posts recently connecting alheminers with cpni, am sure this connection exists,  My granmother suffered from it  now faher is loaing his imind and I have MSi.  Anyway continue living in hope,  best regards to all. love Suzanne

47 finished now, bladder still under control - walking still rubbish

so 47 over have to go back UK tonight, bladder still ok, which is great but no other improvements to report  yet.  Will keep u all updated - best to all, love Suzanne

starting 47 Mon, wish I could recover more!

Ok, do not seying or thinking that this totally hasn't worked, but stil cant walk, and t of patience,  I'm going to go back to UK by Sept where it'll be a whole  lot harder to get anti b's but on with this I have to go, no other choice- as superguy encourages me Ihave had some improvements - bladder  can see out of both eyes again so its all been worth it so far, just wish I had started sooner after diagniosis, and not had the chemo in the meantime - hey ho I'll just have to concentrate on going back etc and at least weather is good in summer.not that I can get out to enjoy it,    How many people are there who this has taken longer for? If anyone knows I'd really apperciated hearing about it.

recovrering from 46 - bladder still ok

very glad it is over for now, nothing to report apart from bladder still being better,   Of course hoping for more but know I have to be patient.  best wishes to all on this journey love S

recovering from 45 and a bit of good news!

Ok so some good news - and can control my bladder again which is great - no more nappies !  I can leave the flat now and drink coke light with vodka again.  The walking,balance still to return but this has given me some hope.  Of course I will post as soon as I have any more good news, love Sxi<

so 45 in process

so on day 2 of pulse now, feeling v bad - can report a little progress, - bladder a bit better can drink coke again which is great - used to go staight through me.  carer got me some adult pampers, that has certainly encouraged me to get a grip!  Anyway still living in hope and getting some positive signs.  Keep on with the battle!  Love S

ok, so done 44 now still in progress!

Hi seems like this is going to go on forever , however I will just have to keep on it for yet longer.  I saw neuroi in UK and naturallu he could offer me nothing and told me that another visit to chemo would best case give me temporary relief . worst case kill me. He reckoned abxi is ok and doesn't know if its working or not but as on as I am stable and there is no quicker altermative then I will continue.  Anyway hope u r all ok. love S

Just started pulse 43, hoping for some big improvements now!

Ok, been speaking to Superguy on skype quite a lot recently an must say he has helped me to see things more positively.  Ok not better yet but there are major things I can do now - ie see out of both eyes and get myself up off the floor, which is pretty major as I live alone now.  I've also got rid of the pain in my feet which is major as they were killing me, thats with the help of gabbapentin, solphadine just couldn't do it.  Anyway thats the good news, just hoping for more after this pulse.

so done 40 pulses now feet really painful, still living in hope.

Wish I had glimmers to report, only foot pain, not good.  Anyway just have to keep going and living in hope.  Best to all, love Suzanne

just fnished pulse 39

still feeling decidely ropy - now starting to understand why this is taking so long- chemo is the answ er in my case, how wish there was a quicker way.  Anyway open fo any suggessonsi   Good luck all love Suzanne

my theory

ok sodone 38 pulses and still got msi why reckon its because  I got diagnosed with breast cancer in 2003, had chemo etc and termporarly got rid of ms - however it returned with avengence = the ms I mean, so now here I am hoping to get rid once and for all.

Living in hope, so totally negative comments not appreciated Bat Girl, pulse starting again Mon - best to all love     S

finished 38 now. getting ;reactoms still and hoping for all this to end soon.

Getting worried now that this will go on forever - I have had to come to acceot that this is going tp tale me a long time, but would love some reassurance that I am on the right path.  How I wish there was an anser for how long out there, I'm v glad that the protocol is on the net.  I have super sore feet now and am v tired as usual.  Anyway best wishes to all, love Suzanne

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