Submitted by Jim K on Sat, 2006-04-29 17:47

Below are reports of what a pulse is like from users of a CAP. I'll clean up and edit when submissions stabilize.   date: Sat, 2006-04-29 08:32 Months on CAP: 2 years; now on intermittent My diagnosed condition(s):: cardiac abnormalities, hypertension, myalgia Number of pulses to date:: in the region of 12 My encouraging statement about pulses:: No reactions now. My initial pulse experiences:: First pulse, nothing except a presentiment that something was going to happen. My experience after initial pulses:: 2nd pulse very unpleasant, with reactions which continued long after. Third pulse slightly unpleasant; no noticeable reactions subsequently. My experience with pulses over time and recently:: No reactions now. My post-pulse experienceover time and recently:: Nearly recovered. What has helped me the most managing pulse reactions:: Plenty of water. date: Sat, 2006-04-29 09:34 Months on CAP: 3 My diagnosed condition(s):: None -- suspect CFS Number of pulses to date:: 5 partial (3 day) My encouraging statement about pulses:: I am basically a little self-indulgent during a pulse:

  • eat more Smarties and drink more malts (soy milk with malt syrup mixed in),
  • put off what I don't feel up to doing, that sort of thing
  • I go to work, but I don't expect too much.

Not a great big deal like dialysis or something, more like working through the end of a cold. Really, it's less unpleasant than, say, preparing for a colonscopy, or having a hangover.The nice parts: Well, beside the Smarties? I find that relief from brain fog is so wonderful that I kind of look forward to a pulse -- kind of cleansing, like, mentally. I estimate that I read/comprehend about 30% faster after a pulse, which then tapers down and down until my next one. My initial pulse experiences:: I tried to take Zith 3x week to start, without doing any of the supplement/diet work in advance. Whooo, boy, don't recommend that! Held off for about 3 days worth of supplements, then went back. Every time I took it, it was like a little pulse -- increased symptoms. After a month, I went on doxy; no real change that I noticed.Two weeks after I started doxy, I started NAC (it was added to the supplement regimen about then.) Symptoms increased, but the reaction basically faded over a couple weeks.Then after 2 months of  Zith and 1 month of Zith/doxy (with NAC the last two weeks of that) I started pulsing 3 days @ 1000 mg Flagyl/day, followed by 7 days off. That's where I am now. My experience after initial pulses:: I get relief from brain fog sometimes during the third day of a pulse -- I may feel kinda crummy and not want to think, but at least I can if I try.Blood pressure dropped after the first 3 day, and has stayed right down there. The skin tags around my eyes/neck are shrinking/disappearing.My xiphoid process had calcified, but now is steadily growing more flexible. Wierd. My experience with pulses over time and recently:: I think I am reacting a little less (although the 4th was less comfortable than the third); the trend has been that I have less discomfort with each pulse.  My post-pulse experienceover time and recently:: I find that the pulse doesn't end when I take the last Flagyl -- I'm still 'pulsing' to some extent for a day or two after.  What has helped me the most managing pulse reactions:: Careful charcoal discipline -- water-only 2hrs before/after the charcoal.B-12Extra vitamin C -- at least a gram with every meal during a pulse.Don't push physically until the last pill is two days in the past -- then, as tolerated.NO red meat; very little protein, no fructose or sucrose.Extra Smarties -- 4 rolls at every meal. date: Sat, 2006-04-29 10:43 Months on CAP: 8 My diagnosed condition(s):: MS RA Number of pulses to date:: 7 My encouraging statement about pulses:: These are tolerable. You react after the medicine is done for the next week or so, but if we call my usual function, challenged though it is, "100%" then after the pulse I am at 75% for about a week or so. My initial pulse experiences:: No reaction to a single pill. the first two day pulse I notied I was falling more often about a week later, but they seemed unconnected My experience after initial pulses:: I recognize the subtle gradual losses of function which sneak in and slowly resolve over the following week or so as being casued by the pulse earlier. My experience with pulses over time and recently:: I am comfortable now recognizing the pulse as causing reactions AFTER the pulse for about a week to 10 days. My post-pulse experienceover time and recently:: Recently I changed to tini much better in terms of psych symptoms What has helped me the most managing pulse reactions:: water, rest, assuring the Wheldon recommended supplements are taken. date: Sat, 2006-04-29 11:35 Months on CAP: 6 My diagnosed condition(s):: Probable MS Number of pulses to date:: 5 full-dose flagyl pulses My encouraging statement about pulses:: I have virtually no reaction to pulses.  I notice a tiny loss of strenth and a tiny bit of tiredness, which may or may not be flagyl-related.  Basically, it's just another pill to add in somewhere a couple of times a day! My initial pulse experiences:: Always the same.  No real reactions. My experience after initial pulses:: My improvement on abx was almost immediate, and i didn't notice any real 'pulse' related improvement once I added flagyl in. My experience with pulses over time and recently:: Pulses have been pretty much the same, from the first one to the most recent, fifth, one. My post-pulse experienceover time and recently:: Nothing to make note of, honestly. What has helped me the most managing pulse reactions:: I just do what I do every day.  I do coat the flagyl with jam to avoid gagging on the foul taste, though! date: Sat, 2006-04-29 12:33 Months on CAP: 19 My diagnosed condition(s):: MS Number of pulses to date:: 1/21 My encouraging statement about pulses:: I take the fifth about mental attitude during, but about two weeks after each pulse comes a higher level of function. My initial pulse experiences:: This is not a thing you do for fun, but if you would like to make plans for your future that are better than your recent past,  assume Sarah's heroic stance and  do flagyl as many times as it takes.   My experience after initial pulses:: First pulse I attempted the recommended 500 mg 3xd.  This was late March 2005. "Too much," cried my body!  I don't remember too much until  around the end of April, when the third pulse ended.  That being said, I must have been improving because at the end of May came very dramtically a moment when I realized I had been working for several hours without my usual exhaustion.  I noted dosages of that pulse.  I was still trying to get back to 500 - day 5 was 375. 400, and 375.  Subsequent pulses until #22 were  all 375 mg3xd, until the latest when I tried 500mg d1, d3, and d5, 1 dose each., the other two of the day 375mg.  It hit very hard and my usual recovery has been slower than usual - unless, of course, I am reaching some kind of maximum recovery.  So, for me, this cannot be hurried.  Next pulse, #23, I will take tini.   My experience with pulses over time and recently:: Less  ennui, less fog, less slow-motion with each pulse, but still much more than between pulses. My post-pulse experienceover time and recently:: With each pulse, a higher recovery of every part of my well-being.   I have not reached the end of my treatment and have a hope of being only half-way there but if my improvement stopped now - I could live with this.  Rica What has helped me the most managing pulse reactions:: My first pul;ses were very foggy, both during and after.  I am not at all certain I noticed any change at all until at least 8 months after beginning abx.  after that, I was off and running.  Beyond that, my attitude was very much that I have to do this to get from here to there, so DO IT.  I was rewarded in some way at varying times after the pulse ended (say 7 -10 days) by a return of something, from tiny to very big.  I had no way to predict what would come next.  The time after the pulse ended could be fairly dismal at times but it was always better than the worst I ever was (which was very bad indeed).  date: Sat, 2006-04-29 16:43 Months on CAP: 17 My diagnosed condition(s):: CFS/FM/MCS Number of pulses to date:: 10 My encouraging statement about pulses:: They make the biggest difference over time in how I feel of anything in the protocol.After the 5th or 6th they got significantly easier and resulted in more improvement of brainfog, pain, and fatigue. Hang in there. They get better, and so do you.  My initial pulse experiences:: It took me a couple of one dose a day for 2-3 days before I could tolerate two flagyl a day for three days. Then that was my limit by end of day three I was quite nauseated. Switching to Tinidazole was a godsend: more energy, little nausea (some appetite suppression), and just as effective. Was able to build up to a full 5 day pulse rather rapidly with Tinidazole.I experienced a lot of inflammation and pain from die-off, especially in knees, ankles, sacroilliac joints, upper back and shoulders. Clumsly coordination, bumpting into things, and poor typing coordination as well. I had a big wave of worsened brain fog along with burning and red eyes for the first day especially. By day two I had noticeable increase in energy, clearer thinking and felt better. Day three I tended to bog down in feeling toxic and loggy, but learned this could be cleared readily with a Vitamin C flush, and the remaining 2 days I felt much better. My experience after initial pulses:: I didn't notice a lot after initial pulses, as I was still pretty sick generally. Improvements seemed like a blip on the screen against the general fog of fatigue, malaise and pain. My experience with pulses over time and recently:: There seems to be a corner turned around pulse 6, both in the pulses feeling more manageable, being able to notice post pulse patterns, and feeling better generally after each subsequent pulse.Places that were exquisitely painful on early pulses in joints especially, now barely ache. Some pains I thought would never go away are lessening more and more with each pulse. I'm less fatigued over all as well.   My post-pulse experienceover time and recently:: I notice clear waves of reaction in the week after a pulse, with periods of pain and inflammation and fatigue for a couple hours here and there through the week. These occur after the medication is likely out of my system, so I expect it is my own immune system clearing the debris and bringing in repair. What has helped me the most managing pulse reactions:: Doing a vitamin C flush on the morning of the 3rd day.B12 injections daily during a pulse. Sometimes charcoal (hard to get myself to use it consistently). date: Sat, 2006-04-29 18:08 Months on CAP: Nine My diagnosed condition(s):: MS and/or Chronic Fatigue ( I have several conflicting opinions) Number of pulses to date:: 10 full 5 day and 1 partial 2 days My encouraging statement about pulses:: The first pulse, I misunderstood the directions and took Flagyl for seven days. Not much reaction but feeling chills and feverish. The worst pulse was the third month when I had the most side effects. They seem to get easier as time goes by. I find B12 injections every other day lessens the secondary porphryia during and after the pulse. My initial pulse experiences:: The first one, not much in the way of side effects but the second one caused a big reaction. I had to stop after day 2. It's OK to back off for a few days if you feel too toxic. The reactions sem to be diminishing with time on the treatment. My experience after initial pulses:: I had a worsening of all symptoms and some new ones, too. It takes about ten days for me to feel better afterward. My experience with pulses over time and recently:: Energy and cognitive improvements were the first changes noticed. Diminished pain and absence of strange sensations in muscles were later improvements. Eye pain was evident in the beginning and is gone now. It was difficult to discern a regular pattern over the months. In Jan and Feb, I had a lot of joint pain that is now gone. My post-pulse experienceover time and recently:: My energy is increasing as the months go by. My ability to work is strong. My sleep patterns are now normal. Typing and cognitive skills have greatly improved. Balance and stamina for exercise are greatly improved. My last pulse was fairly mild but the most recent one ended 3 days ago and I feel a little tired and dodgey. (But my work schedule this week was a real marathon.) What has helped me the most managing pulse reactions:: I would have to say the B12 injections have helped the most. I begin them every other day (3ccs)in the middle of the pulse and continue for about 5 days. Also, eating lots of good food, taking the supplements and getting enough sleep. date: Sat, 2006-04-29 20:09 Months on CAP: 5 My diagnosed condition(s):: CFS, FM, lumbosacral meningoradiculitis, bronchial hyperactivity Number of pulses to date:: 5 full pulses, one one-shot pulse of 1 g metronidazol My encouraging statement about pulses:: Every subsequent pulse I have felt improvement though during second half of every pulse and several days after last day of any pulse it seemed to be worse. My initial pulse experiences:: First day of a first pulse I felt like by starting NAC and then fatigue; tingling, numbness and myoclonus in limbs and back,  pain all around the body - muscles, joints, loin like kidneys...Third day dark urine. Rhinitis. 1. pulse two month after beginning of CAP - 7 days 3x500mg2. pulse - 9 days 3x500mg daily 3. pulse - one-shot pulse 1g4. pulse -  6 days 3x500mg daily5. pulse - 5 days 3x500mg daily6. pulse - 6 days 3x500mg daily  My experience after initial pulses:: After many years I felt better as regards my back. The horrific long-lasting rigidity alleviated, at least partly. My experience with pulses over time and recently:: Every next pulse I felt fatigue, tingling, numbness, fasciculation, pain all around the body - muscles, joints, loin, feet, calves, hands and shoulders. Recently mainly fatigue, only few myoclonus. At the beginning I couldn't stay sitting because of big pains in my back, legs and mainly calves. I had to use pills against bronchial hyperactivity (like asthma), now I need not use any pill! My post-pulse experienceover time and recently:: During second half of every pulse and several days after last day of any pulse it seemed to be worse. Now it is first day after last pulse - I am tired, unable anything to do. But at the beginning, after the first pulse, I wouldn't be able to write even any letter! What has helped me the most managing pulse reactions:: Maybe charcoal and C vitamin. The nearly full list of recommended supplements I have only added by penultimate pulse. But I think it seems to be very useful taking allrecommended supplements. And to drik plenty of water. I have drunk plenty of green tea and various fruity tea.    

Comments

Jim,  a great idea and logically put together.  Please, on editing, remove my name (just habit) and fix my typos - (at least 2).Rica Ignorance is voluntary bad luck.  Lauritz S.   A true Viking If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am