My sustained flagylation leads to porfyric vicious circle

Submitted by Michèle on Wed, 2007-05-23 05:10

Maximouse, with her pink ear tag indicative of sustained flagyl, has had to switch places with Minimouse wearing a blue one indicative of fall back to less flagylation.

I'm feeling a bit sheepish (or maybe mouseish) after high hopes of improving the rate of die off and speed the recovery a bit along the way, but after taking 400mg of metronidazole daily for 6 weeks (with a 5 day pulse of 1200mg in the middle) I have had to give my poor liver a break for the past week.

Pulse 17 brought quite strong reactions, but abated quickly and I was able to continue taking the metronidazole with minimum side effects, pulse 18 escalated the die off and I was feeling the full effect of the extra metro within 12 hours of starting the higher dose, and felt quite ill for the duration of the pulse.

Post pulse 18 porphiric symptom abated somewhat, but the irritated oesophagus, skin flare ups, the loose bowel movements and the copper coloured urine stayed with me, in spite of the charcoal and careful eating and drinking.

In the light of the recent discussion between Basil, Red and Jim, the explanation that there might be a vicious porpyric circle, makes sense to me. I was thinking that I seemed to be stuck in a situation that was not improving and that I needed to give my liver a rest. The explanation that Basil and Jim provided fits with my experience. A couple of days after stopping the flagyl, my oesophagitis abated dramatically and the urine has returned to a more normal colour, my gut feels healthier and my skin lumps and bumps have lost their angry look.

So maybe it was a bit too soon for me to go down the continuous flagyl even at the lower doses that I was taking. For the time being I will go back to: 5 day pulse of 1200mg, 9 days off flagyl, 7 days on 400mg, before starting another pulse. This seemed to work before and maybe I can start doing continuous flagyl in a couple of months time.

My increased Flagylation has had results in terms of improvement though: I have definitely felt some changes in places that had not been addressed before, especially in my lower abdomen and my legs and feet, and I have felt well enough since stopping the continuous flagyl to go back to my exercise programme at the gym and take a daily stroll in the spring sunshine.

 Michele- I had my own version of this: continuous tini then flagyl for two months and an eventual build up of severe brain fog, depression and flattening of affect. 8 or 9 days break allowed recovery and I'm carefully restarting with 500mg tini thinking that not only porphyria but flagyl itself was having a build up effect. So far okay 5 days in except for muscle and joint aches. As some of us are working towards trials of continuous therapy, I think these reports are crucial for us to share the data.

  • I'm thinking that moving to "continuous" therapy may be more like longer "pulses" with breaks in between, the length and break time subject to the dosage you are using for continuous as well as the amount of time needed for clearance of symptom build up.  For example:
  • Gradually shortening the time between pulses.
  • Gradually increasing number of days of pulse.
  • A combo of the two above. 
  • Single dose for as long as can be sustained with a week or so off for clearance of symptom build up. Remain on this until two doses a day can be tolerated, etc. I'm going to move to this approach for now.
  • Maintaining a single dose in between pulses if you are tolerating pulses well with few reactions.

There are probably other variations. The main thing here is not to underestimate that continous treatment with the bacteriocides (flagyl/tini) really does appear to get at tissue layers not gotten at by shorter pulsing, and that there can be a build-up of reactions over time even for those of us who seemed to no longer be reacting much to pulses. It can take you by surprise, particularly if you are cussed stubborn (read a bit stupid) and tend to push through even though it would be smarter to stop! I was frustrated thinking I was "failing" continuous therapy, but the reality is that movement to this requires breaks when and as needed to allow for recovery time. We can call it "extended pulse" or a variety of other names, but the body's need is what should determine the rythm of treatment, not some intellectual goal.


CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)


CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Well said, Jim.. Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

Jim, "....but the body's need is what should determine the rythm of treatment, not some intellectual goal..." This colossal reality could not have been expressed better. Jan CR /Prague; On CAPs:12/01/2005; 20 years CFS, then fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension. May 07 - big improvement Currently: 300 mg Rifampin, 200 Doxycycline, 500mg MWF Azithromycin, 1 500 mg Metronidazol (5 days in a month)

On CAPs:12/01/2005 till March 2013; 20 years CFS,IBS, fibromyalgia; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension...