Pulse 3

Finished pulse number 3 yesterday, it wasn't a walk in the park, but nor was it too difficult. Yesterday I was more awake than for ages, but, slept dreadfully last night, so i'm tired today and our long dog walk, on the beach, exhausted me, i ached (strangely, n my arms,hands and and elbows) but, again,not too much. I haven't had the CPni test, and won't, for the same reason haven't asked for an updated MS dxi ... suggestion!  I don't think many of us here are 'victims', just people carrying their crosses with as much grace and humour as possible. And i'm looking forward to a drink tomorrow night!

Jane

Comments

You are doing fine.

Congratulations, Janet on finishing your pulse. How many days did you say? If it had been a "Walk in the park" I might have suspected that there wasn't much there for the antibioticsi to kill. I think that a bit of herx is like a big neon sign telling you that you're on the right road. I hope that road leads you to returned health and fitness.


You are doing fine.


G.

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

―    Abraham Lincoln<

Thanks Supaguy,your comment

Thanks Supaguy,

your comment makes it feel so much more worthwhile!  I've done 5 days for all 3 pulses. I know i could do less, but giving in to MSi seems defeatist.

hope you're doing OK?

jane

MSi symptoms began in 2001 DXi RRMSi in 2008, following an MRI, precipitated by some sight loss, Interferons, on and off, until 2012. New consultant prescribed chemo infusions, to slow progression.

Well done Jane: you must be

Well done Jane: you must be one of the few people these days to start doing five day, full pulses, rather than building up to it.

I did have a c pn test, but only after having started the treatment.  It was only 1:64, which was so minimal that most doctors would not have bothered treating, however, David had seen how I responded to the first couple of packs of doxycycline: a real herxheimer reaction!  1:64 is just indicative of how much c pn there is in the bloodstream, but this is an intracellulari pathogen.

I am waiting to see how the aches and pains in your arms, hands and elbows develop.........................Sarah

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

Hi SarahRreally? Do most

Hi Sarah

Rreally? Do most people need to build up to the full dose? I'm not brave enough for that! It seems, to me, that if I can tolerate the pulse, i should, although i realise i am lucky.

I've had achy shoulders, ever since I began ABXi, and my strongest arm has become my weakest!

Today, i've ached a little and, despite taking 1.5 gm thiamine, i am exhausted! I worry that i didn't have such extreme reactions o Doxyi or the additions of Roxyi abd Metroi, but know we're all different and i did (and still do) get occasional shiveriness.  I'm,very, heat intolerant, but now cannot gauge the real temperature at all and have to ask Paul if it's hot or cold!

Jane

PS i've just realised that, although my right hand knuckles  ache, just a little, the tennis elbow i started with about four years ago, ha swpped sides! It isn't dreadfully painful, but,uncomfortable, and surprising, in that i can't think why i have it, eems it,  probably  has a bacterial cause!

MSi symptoms began in 2001 DXi RRMSi in 2008, following an MRI, precipitated by some sight loss, Interferons, on and off, until 2012. New consultant prescribed chemo infusions, to slow progression.

I find that the greatest

I find that the greatest bacterial die-off often occurs between the second and fourth metronidazolei pulses, often with feelings of ’flu. It characteristically keeps on between pulses, suggesting that the released endotoxinsi are arousing the immunei system.

 

Reflex Sympathetic Dystrophy is common during treatment. It manifests itself as a flitting pain which shifts along a limb; one moment it can be in the hand, the next the shoulder. I once treated a young man with serologically proven C. pneumoniae pericarditis; three weeks into treatment he had very unpleasant RSD. Fortunately, it soon goes. RSD is caused by damage to main mixed trunk nerves; it was originally described in firearm wounds during the American Civil War. (Charles Strattoni and I speculated that “nests” of C. pneumoniae occur within these nerves, and that RSD is caused by released endotoxins when the bacteria are killed.) Both Sarah and I had RSD, Sarah worse than me. Some persons experience a change of colour and temperature in the affected limb. As I say, RSD eventually clears.

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Jane, if you look in the

Jane, if you look in the Treatment Handbook n this site or in David's MS pages<, you will find how most people now go about pulsing.  Pulsing started in 2004 and the majority of us early pulsers took a full dose for five days, no matter how bad we felt, but later it was decided that it would be better to give the option of starting more gradually: better that than just giving up too soon!  Metronidazolei is a notoriously awful antibiotic to take and Vanderbilt had to stop the only trial for C pn ever done that included it, because too many people just dropped out.

My MS must have started in the early eighties, so ever since finishing at The Slade School, I had it.  It never included any pain though, and never really affected my eyesight, apart from a loss of strength of colour in one eye for a few weeks.  Pain only started when I started  taking these antibioticsi, firstly a sudden pain when slamming closed a car door, but then much, much worse during and immediately after my third or fourth pulse.  Then nothing since!  It seems that for me, the pain was the infection being upooted.......................Sarah

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

Thank you David, now i know

Thank you David, now i know why I've had some chest pains, no worse than i've had before, but good to know it's normal.

Jane

MSi symptoms began in 2001 DXi RRMSi in 2008, following an MRI, precipitated by some sight loss, Interferons, on and off, until 2012. New consultant prescribed chemo infusions, to slow progression.

Hi Sarah,Don't worry! I did

Hi Sarah,

Don't worry! I did read everything on this site, David's own site and beyond, then i re-read everything and Paul also read it all twice, i'm simply surprised that so many people would choose the one day pulse, at first. I am very aware that some people have appallingly bad reactions, and that it would be horrendous to suffer , month after mont, feeling the disease would be less onerous! But, as i've said before, i could tolerate the pulse so felt I should! Although i was glad when it was over! 

Jane

MSi symptoms began in 2001 DXi RRMSi in 2008, following an MRI, precipitated by some sight loss, Interferons, on and off, until 2012. New consultant prescribed chemo infusions, to slow progression.