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 metronidazolei [1] 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.
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Michèle (UK) GFAi [2]: Wheldon CAPi [3]i [3] 1st May 2006. Daily Doxyi [4]i [4], Azi MWF, metroi [1] pulse. Zoo keeper for Ella, RRMSi [5]i [5], At worse EDSSi [6]i [6] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Links:
[1] http://www.cpnhelp.org/taxonomy/term/44
[2] http://www.cpnhelp.org/glossary/term/162
[3] http://www.cpnhelp.org/glossary/term/168
[4] http://www.cpnhelp.org/taxonomy/term/39
[5] http://www.cpnhelp.org/glossary/term/184
[6] http://www.cpnhelp.org/glossary/term/171
[7] http://www.cpnhelp.org/chlamydia_pneumoniae/an_0
[8] http://www.cpnhelp.org/glossary/term/175
[9] http://www.cpnhelp.org/glossary/term/163
[10] http://www.cpnhelp.org/taxonomy/term/24
[11] http://www.cpnhelp.org/chlamydia_pneumoniae/anti
[12] http://www.cpnhelp.org/glossary/term/167
[13] http://www.cpnhelp.org/print/2324#comment-14642
[14] http://www.cpnhelp.org/print/2324#comment-14644
[15] http://www.cpnhelp.org/chlamydia_pneumoniae/ca_0
[16] http://www.cpnhelp.org/taxonomy/term/19
Michele- I had my own
Michele- I had my own version of this: continuous tinii [7] then flagyli [1] 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 porphyriai [8] 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.
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.
CAPi [3] for Chlamydia pneumonia since 11/04. 25yrs CFSi [9] & FMSi [10]- Currently: 150mg INHi [11], 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)
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CAPi [3] for Cpni [12] 11/04. Dx: 25yrs CFSi [9] & FMSi [10]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [7] 1000mg/day pulses; Vit D2000 units, T4 & T3
Well said, Jim.. Prague, [13]
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Prague, The Czech Republic, On Wheldon protocol since 02/18/2006, CFSi [9] and many problems 30 years (cpni [12] and mycoplasma), 3rd year on protocol- doxyi [4], azi, tinii [7] pulses
Jim, "....but the body's [14]
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Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi [9],IBSi [16], fibromyalgiai [10]; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni [15]. August 08 - still improving