my observations on Flagyli [1] pulses 7 (july) and 8 (August).  Pulse 7 I did 4 days, pulse 8 I did 3.

Well the patterns continue in their unmistakable way.  From Day 1 of the first tablet to usually 12 days later no major reactions.  Perhaps short-lived or occasionally wiped-outness, but nothing majorly tricky.  Then days 12 - 22 the REAL reaction.  DAY 18 in BOTH pulses were the worst nightmare; just pain, weakness, shock headaches, and overwhelming fatigue.  After around day 22 just feel fairly normal again ...  In all my pulses I have a period of about 3 - 5 days which are the worst, as i said around 2 weeks after day 1.  How strange!  I know we have commented on this delayed reaction many times, but mine is like clockwork now!

Pulse 8 was harder a little than pulse 7.  It may be because I stopped taking 6 g calcium pyvurate 1 hour before each antibitic dose.  In other words, there may have been quite a bit of road kill leading up to pulse 7 at RB (replicating) stage which made it easier at flagyl time for cryptic, yes?  Anyway, I'm just back on calcium pyvurate in the hope this makes the path easier for pulse 9 in september.

my hair is still falling out, but at a slower rate than before, so not that concerned about this anymore.  I am coughing up alot less phleglm generally at pulse time - as if some of the lung stuff is clearing out.  however, i do get a couple of days at the worst time where some blood comes up from my lungs.  i get it at no other time so i am not unduly worried, but it is a little odd no-one else ever seems to have this symptom.

I feel i have got a handle on things much better.  When I feel the poryphria coming, i now know what to do.  I seem to have a cycle on the flagyl pulses so i can time and plan things at least to some extent e.g. holidays.  I do have to try and keep a handle on my emotions at the worst flagyl times still.  it can be very difficult occasionally - i find myself screaming a swear word at full volume, which can be very difficult for my 5 year old.

One thing i would like to comment on is the PAIN I get at the worst reaction times.  For me, it is the strangest pain I've ever experienced.  It is not acute, but  is much more than a vague ache.  I feel as if it is in almost my whole body neurologically - either way i can't locate it for some reason, its as if its in my whole being.  luckily, i know it will go in a few days.  but it is quite something, along with the headache and the fatigue.

Been doing it for 9 months now.  I feel it is 4 more pulses to christmas and i will have an even clearer idea then!  I hope the worst to be over by then and 2009 to be an easier ride.  certainly the last few pulses have been easier than the first few, where i often felt sometimes felt quite bewildered at all the horrible reactions i was having plus other colds, illnesses, etc.

i am feeling better, when not experiencing flagyl reactions, and that is where i am now.  My legs are still weak and achey with exertion and my energy limited, but in other ways I have been improving.  I hope this is a continuing trajectory.

Adios.

Blackfoot, England

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M.E./CFSi [2]i [2] 20 years, intermittent.  Wheldon Protocol - Started NACi [3] and supplementsi [4]i [4] Sept 2007. Doxyi [5]i [5] and Roxy full dose by Dec '07.  First Flagyli [1] pulse January 2008.