my observations on Flagyli [4] 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!

Getting near 8 month mark of CAPi [6].  I am doing this blog mid-pulse for a change, perhaps for some balance.  I usually only blog when I feel awful.

So, where was I?  Not feeling so bad is about what I can come up with.  Sleep (generally) well now at night, not needing naps during day since my last-but-one flagyli [4] pulse.  Still need my sleep desperately - often manage 9 hours straight through.  Occasionally nap in day but usually short, sometimes only 20 mins.  Though I still often wake in a slightly paralysed state, which feels weird.

I look kinda well ATM, I get very depressed when I look sick.

you could add achey, tired ones too. 

I have been doing CAPi [6] (Wheldon Protocol) now for well over 6 months.   I have found the whole CPNorg website immensely illuminating on so many subjects, but it is inevitable around this point that I question how I am progressing, especially in light of some continued difficulties.

i was wondering if anyone else got this.  usually several days after my short 'flagyli [4] pulse' finishes, i get the 'sore throat, glands up' scenario - which I am sure some people will be very familiar with here.  It really is part of the 'feeling awful' thing. 

My conjecture - on what i've read on this site is that - its a re-emergence of my HHV6 infection when my immunei [9] system is low (i used to get it after my period too) - which I still have to deal with - and for which I am still waiting to hear from my GP with the OK for prescribing drugs for this.

did people who are longer on the protocol see this particular symptom go, and cheer gladly, madly at the sideline?

or is it still stumbling .....? had one of those days ... at the moment got tea tree oil everywhere somehow .... ick.

anyway, short report on mini pulse 4 (2 days ) and pulse 5 (3 days).  Took quite close together, for holiday timing reasons.

As usual the actual days on flagyli [4] and for a few days after really quite fine and dandy, with the odd wobble. 

Been more committed with anti-porphyriai [11] measures e.g. charcoal or cholestyrime each evening etc. as soon as I get a sore throat or headache.

So, secondary porphyriai [12] much more under control it seems.  Or perhaps there is just a little less of it.

hi there,

this time round (4th and 5th flagle pulse) have felt that anti-poryphoria measures have worked better - since I am now doing them properly!!!!!

I take the cholestyramine sometimes, charcoal others.  I take lots of B12 (so delicious!) and I try to remember the Emergen C/glucose drink!

What I am unsure about is when I should do the Vitamin C flush.  Is it just a feeling of being weighed down despite above measures?  Does it tend to be last on people's list?  Just wondering.

I still feel weak and fatigued after my last pulses - but the anti-porphoria measures I am using at least seem to help deal with the sudden angry impulses and vile headaches.

Suffering here with porphoria it seems.  Its really just making me feel generally weak and sick to the point where i can't do anything.  Plus headache, panda eyes, and (last night) hot and sweaty. 

Its been dragging on for days now, and I started taking cholestyramine about 5 days ago: I thought it would help.  I am now taking Emergen C on top of this as I am not really getting the relief I want and am getting constipation into the bargain.

I feel it may be porphyriai [11] caused by Doxyi [15] and Roxyi [16] and (possibly) Vitamin Di [17] as I started taking supplments again after a few weeks break (I felt they were making me sicker).

My hair falling out at an unusal rate - when I started CAPi [6], this continued and even increased with flagyli [4] doses.  I accept this must be CPNi [19] die-off of infected hair follicles, as I can see no other explanation. 

However, this 3rd flagyl pulse, I am getting a little worried.  My hair just seems to be getting so thin!!! 

On the positive side, it may mean 'healthier' hair in the long run (one hopes) but it is alarming just now.  I've been on CAP antibiotics for about 4 months now.  I know others have experienced this, but how did it pan out in the end, and did it take a long time on the way ....?

But first the honeymoon ... !

I reduced flagyli [4] slightly from Pulse 2 :

Day 1 : 3 tabs

Day 2 : 2 tabs

Day 3 : 2 tabs

well the first 3 days and the following 5 -  were really a dream.  that meant 8 lovely days -  high-on-life, peaceful.   I didn't experience that except momentarily on Pulse 1 and 2.  Occasional edginess to euphoria - could it tip over to something darker - but it never did.  Also energy was more mental than physical, which lagged behind.  Still the mental energy seemed to make up for it - a passing thought in a taxi - I could go clubbing if only I had the right lycra.... .

Maybe an obvious question - but do people here believe that 'classic' die-off reactions to Flagyli [4] are proof positive of CPNi [19] infection?

(had a difficult part of second pulse and want to reassure myself that i am struggling for a reason).

Thanks.

here follows an account of pulse 2.  i did it for full 3 days. 

day 1 - nothing

day 2 - a.m. woke up with sinking feeling, a dramatic enveloping gloom - the world literally went dark for a few hours.  By afternoon it subsided and i think i went a bit high, well certainly lively. first few days slightly 'tranquillised' feeling, not altogether unpleasant.

day 3 - day 6.  OKish, but patchy headaches, tiredness.  day 4 was bad and did the charcoal/emergen C.

day 7- 13,  Awful.  Heavy-metal feeling, vile headaches, nausea, exhaustion, weakness and achey-pain in whole body.  did vit C flushes and felt better for a while.

day 14 - woke up feeling fairly fine.

today - OKish.

i vowed not to blog till well after my next flagyli [4], given my premature conclusions last time! - but here goes.  now i am more or less getting back to some equilibrium, i am wondering about supplementsi [24].  i take doxyi [15] first thing a.m. (no reaction) and roxyi [16] in evening (no reaction), and i don't think i have ever had anything majorly obvious there. 

However, I do take all my supplementsi [25] together in one go at some point when i eat and sometimes feel really quite sick an hour or so after, and this can last longer.  i think it may even increase my weakness and fatigue.

By this I mean NACi [26], Vit D, all the other standard vitamins and supplements listed on the Wheldon protocol.  I just wondered why this might be? any theories ....

blackfooty

Some people may remember I started finished my first pulse 10 days ago. 

I did full 3 days flagyli [4] and felt fine.  Then unfortunately as I already chronicled on this site, I got suddenly tearful a few days later – followed the next day by a nasty cold – which has typically for me dragged on, getting worse and worse.

after pretty OK first flagyli [4] (a bit wakeful, a bit high even).... the tears came a couple of days later.

also combined with swollen neck glands - a common feature of my ME.  perhaps a revisit to a CPNi [19] site, i don't know.

but the crying thing.  is that a sign of CPN?  if you didn't have CPN and took flagyl would you get more emotional and cry?  it seems a bit odd.  i know ME/CFSi [29] can affect you that way anyway - but i really have been very tearful this morning and yesterday.

x