Anatomy of a Pulse

After about five pulses or partial pulses, I developed a mental model of how I respond to them, which has held up fairly well through the succeeding pulses (of which there have been nine, for a total of fourteen). The overall strength of my responses has diminished with each successive pulse, but the pattern has remained the same, and is as follows.

About three hours after taking a pill of metronidazole, I start feeling a bit tired. If I stop the pulse there, then the next day I continue to feel fairly tired. (Often, in response, I take a nap, which helps.) Also, during the first few pulses, another effect would start that day: an unpleasant feeling which was nonspecific, and very hard to describe; if it got stronger, it would resolve itself into anxiety. This unpleasant feeling I blame on secondary porphyria -- partly because anxiety is a typical symptom of porphyria, and partly because that unpleasant feeling always seemed to go along with a very mild abdominal pain, which is another typical symptom.

If I stopped the pulse after the first day, then on the third day I'd feel about the same as I did before the pulse, except still with a bit of the vaguely unpleasant feeling. The fourth day, I'd feel even better -- that is to say, very unusually good. On one occasion, when I was first starting out, I woke up on that day, stretched, and couldn't feel any of my usual mild back pain. In addition found that I was thinking so rapidly and clearly that the thought sprung to my mind: "It will take some time for me to learn how to use my new superpowers wisely." Of course what that really indicated was how low I'd sunk, for how long; in the long term, that thought changed to "It's nice to be back." But on that occasion, the good feeling and the mental ability didn't last long: after another day or two, a delayed reaction set in. It was much milder than the immediate reactions to the pulse, but it lasted much longer: about two weeks. I suppose that the cause of this temporary good feeling is that cells that have been cleared of Cpn function better for a couple of days, then commit apoptosis; there is then some inflammation as the apoptotic cells are cleaned up, after which the body does as well as it can without those cells, until replacement cells regrow (which takes quite a while).

Graphed, my mental model of my reactions looks like this, for a single-day pulse:

A five-day pulse is like five of those shifted and added together (mathematically, a convolution with the sequence 1,1,1,1,1):

One limitation of the above graphs is that the delayed reaction is a lot less predictable and uniform tham the graphs show. It comes in waves: one day I'll be feeling quite good, then the next tired and a bit anxious (but not vice versa; as in the stock market, improvements are more gradual than declines). Exercise, in particular, seems to prompt a decline, which makes itself felt the next day. (But if I wait until the delayed reaction is over, then exercise no longer does this. I suppose that it's speeding up apoptosis, not causing it where it would otherwise not have occurred). In any case, the delayed-reaction section of the graphs should be regarded as showing not how I feel on any given day, but rather the average of what I might be feeling.

As can be seen on the graph, the improvement that occurs on the fourth day of a one-day pulse is overwhelmed, in a five-day pulse, by the fact that I'm still taking metronidazole on that day. But the two effects don't truly cancel out. What I feel on that fourth day is a strange sort of unquiet energy, amidst a general bad feeling. I have a tendency to break stuff accidentally on that day, and the next. (I normally almost never break things accidentally.)

Another thing the above graphs doesn't show is that the delayed reaction really lasts more than a month: even beyond that point, there is still some of what I suppose is apoptosis and rebuilding, although of a much lower intensity. (Most of the time I've started another pulse on day 25; but I've stretched that interval enough times to know that I continue getting better after that day.) And, as I mentioned, another thing the graphs don't show is that the overall intensity of the reactions has been decreasing with each successive pulse (which I've counterbalanced by taking increasing amounts of medication). The part of the reaction that seems like porphyria has decreased even faster than the general tiredness and ill-feeling.

All this is, of course, just a report of my own experiences. I have made no attempt to incorporate anything anyone else have reported; and some have reported very different experiences.

Thanks for your insight Norman, it might explain the time it take Ella to recover from some of the set backs brought on by Flagyl.  

Michele: Wheldon CAP1st May 2006 for ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS. Sussex UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Norman- As usual, your keen observation and your associations to the sequencing of cellular impact generates a very useful model. Your graphs help visualize a phenomenon spoken of frequently here so that it really comes across. I like how you are distinguishing between ill feeling and functioning from porphyrins vs apoptosis. Sounds like you don't have much of the endotoxin reaction at the front end: chills, cold, fever, body temp drop, etc, yes? 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!


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

Endotoxin sorts of effects are what I've lumped under "Ill feeling". That includes, at its worst, a bit of feverish feeling. I haven't taken my temperature much, but the feeling is mild enough that I doubt it means more than a degree (F) or so of rise. I haven't observed temperature fall below normal, but then I haven't been looking for them.

One other thing I should mention is that it seems as if my reactions have been shifting more to the delayed side, as treatment goes on. It's hard to tell, though.

Interestingly, although more severe endotoxinb reactions can be fever, in chronic infection the endotoxin actually lowers body temp. Dr. Powell uses temp drop as a rough indicator of endotoxin dump after a detox treatment like sauna sessions: if you raise body temp, especially for those of us with chronically low temp (mine's 96.7) and it ramps up your immune system (artificial fever) you get bacterial kill and even lower temp next morning than average. I don't have the references handy, but it might be interesting to track your body temp for correlation to the "Ill Feeling."

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl 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


What Jim says is true for me. My temp for years was in the 96 range. Now I am always 99 or above. It is interesting to know Dr. Powells comment on that. I also have the same experience with pulses. I have never taken tini always flagyl. My reactions are getting less. The first days fatigue then that lifts and I think nothing is happening then the pain sets in, also the brain fog and all the other fun things.

sjogren's diagnosed 2/03, 200mg minocin daily, mwf zithromax, flagyl every 3 weeks.

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily


sjogren's diagnosed 2/03, 200mg minocin daily, mwf zithromax, flagyl every 3 weeks.

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

The times when I measured my temperature were all in the early stages, when I was first getting on to antibiotics. It was always close to normal (normal meaning the standard 98.6 F), even when I felt a bit feverish. Eventually I stopped measuring, because it seemed like a waste of time. But I wasn't very sick to begin with; others are likely to see more body temperature variations.

Control exhaustion using temperature measurement. By measure temperature first thing each morning at 6-6.15. Walking for same distance (30 minutes). Breakfast at 7. Resting after 8 when family had left the house. I have learned to normalize my body's reactions. To get a more predicted behavior of the reactions and be able to change them. One goal for me is to have my energy and neurological functions functioning for 24 hours, both during awake and sleep. Without the need to feel or think to much. To much usage during day affects the night. For me there are a correlation between altered morning temperature combined with the performance test(walking) and how much energy and sensory input I have to me disposal for daily activity. I had temperature below 36 C when I where in a bad shape. My Temperature ranges 36.8 C means normal and morning walk performance confirms. 36.4-38.6 means be careful let morning walk performance decide. < 36.4 C Be careful, consider skip morning walk. Rest more than normal. > 37 C Be careful and rest as needed. Walk performance is judged by behavior in walking speed, pulse and breathing. I have achieved for my sickness a speedometer, accelerator and brake, and this is essential for creating a change. There are other measurements can be done within low budget. To measure temperature you need to use a thermometer that measure actual temperature under tung it takes 2-3 minutes for reading to stabilize. Some models are faster but they do not measure actual temperature accurate. It's the regulation of temperature that are of interest not the absolute value. Therefor the need for accuracy and to measure under tung. After some time you will new your status without the need to measure. You only need occasional measurements to confirm. /Per
/Per ----- Chronic Neuroborrliose,abx+E-vimin+selen+Q10+B12 antrophsofic medicin and therapy. First I was afraid, I was petrified Kept thinking I could never live,Oh no, not I
I will survive

Having been trained as an engineer, I found the graphs really informative.  I'm just starting out on the CAP and was wondering about the effect of the Flagyl pulses and the resulting bacterial death.   With one glance, I got the answers to most of my questions.  Thanks.

CAP for M.S. since 8/2007.  Currently: 200 mg Dox.  Waiting to start Zith & Flagyl.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

NormanI think the "unpleasant" feeling you experience is the same thing I do.  It is difficult to describe and seems to occur around the same time as yours.  I have a "jumping out of my skin" feeling, hard to feel settled, need to move constantly.  We need to come up with a name for it!  That way when someone experiences it we will know what they are talking about.Lori Started Vanderbilt protocol 1/9/08  Rifampin twice a day, azithromycin MWF, flagyl 7 days/month,  b12 injection monthly NAC daily, DHA, calcium pyruvate, prilosec
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly

"We need to come up with a name for it!"

How about Eebeejeebies. Or EBGBs for short. Image removed.

Berkshire, UK. Diagnosed MS Feb 4th 2008.

NAC first dose 600mg Feb 9th 2008. Increased to 2400mg Feb 19th.
No GP/Neuro support. Self medicating with assistance from D W.
Starting Doxy April 2008

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April