Ramping up

When I left off my last big report (in May 2006), I'd done three pulses, with one, two, and four pills of metronidazolei (500mg), respectively. After that, I continued working up the dose in the same manner -- that is, doubling it each time, until reaching the full dose. Subsequent pulses were:
  • A pulse with a total of nine pills. (500 mg metronidazole, two a day for five days, except I wimped out on the last pill, as my heart rhythm became somewhat irregular, with quite a few missing beats and extra beats, and I had some minor chest pain. The irregular rhythm was a recurrence of something I'd had a few years before; I'd gone to the doctor, then, worn a heart monitor for 24 hours, and been told that it wasn't anything worth worrying about. Soon after that, it mostly went away; but a residual irregularity -- occasional missed beats or extra beats -- had remained, which then went away after a few months on the bacteriostatic antibioticsi. On this pulse, it came back as strongly as at its worst; but after the pulse it quickly went away.)
  • A pulse with a total of fifteen pills (three a day for five days). This felt about the same as the nine-pill pulse, except that it didn't affect my heart as much.
  • Another 15-pill pulse. This one hit harder. Toward the end of it, I developed a revolting sour smell (and taste in my mouth) which I normally associate with old people in bad health.
  • Another 15-pill pulse, which hit about half as hard as the previous one.
  • Another 15-pill pulse, with added niacini: besides taking 500 mg slow-release niacin twice a day, on three occasions I took 500 mg non-time-release niacin together with a metronidazole pill. Each time it walloped me. Again, toward the end, I was smelling like an old person.
  • After this pulse, I had the followup MRI. From here on, I stayed on the slow-release niacin (500 mg bidi), as I found it vastly improved my acne.
  • Another 15-pill pulse, this time with lots of niacin: I took a 500mg non-time-release niacin pill together with each of the first two metronidazole pills of each day. Again it was pretty brutal, but this time my heartbeat didn't become irregular; the beats just became a little more abrupt, but they remained regular.
  • After that pulse, I had an appointment with my neurologist, to go over the MRI results. The lack of any new lesions seems to have made an impression; he is now seriously interested in Cpn. It didn't take any persuasion at all to get a prescription for rifampin. After starting rifampin (which I've since been on continuously, at 600 mg once a day), I waited a couple of weeks before the next pulse, since I reacted strongly to the rifampin. But it was perhaps not enough, as the next pulse was:
  • A 7-pill pulse, with a total of something like three pills non-time-release niacin. I aborted this one after the first pill of the third day. The taste/smell had become so strong that I was almost involuntarily shaking my head as if to get rid of it. Also, I was nauseated to the point of vomiting; and the nausea didn't quickly go away after vomiting, but rather lingered into the evening.
  • A 6-pill pulse, with four pills non-time-release niacin: Again, I aborted this one, due to vomiting and overpowering bad taste. I went for blood work the day after aborting it; I later learned that my white blood cell count was decreased at that point (although still within the normal range).
  • At this point I decided to lay off the niacin (except for the time-release stuff), and (after a long break for Christmas) did another pulse, which turned out to be:
  • A 15-pill pulse. Despite the strong bad taste, I managed to get through this pulse. Prior to this pulse, I'd thought my cardiovascular system had been pretty well cleaned out, since even the previous two abortive pulses hadn't changed its now-regular rhythm (although the beat had gotten a bit sharper, each time); and indeed even at the end of this pulse my heartbeat was still regular; but afterwards, for a week, a bit of irregularity came back (although nowhere near as much as in the first nine-pill pulse). Another thing that came back was the odd little random muscle twitches, every now and then. These were renewed with
  • the following 15-pill pulse, which on the whole was about the same as the previous one. At the end of each, I was generally feeling quite lousy; it seemed as if it wouldn't take much more to push me into vomiting territory, where I'd have been aborting the pulse again. This time the cardiac manifestations came on earlier in the pulse; I suppose the system hadn't fully healed; or maybe cells cleared of Cpn during the last pulse were still committing apoptosisi.
As per the protocol, I started each of the above pulses at least three weeks after starting the previous one. Often, for reasons of convenience, it was more than that.

The main trend in this has been that my reaction to the pulses has generally been decreasing, so that I have to pile on more and more to get the same amount of suffering (and, presumably, bacteria-killing). But also, as I've learned what I can tolerate, and as the amount I can tolerate has increased with improving health, I've been increasing the level of killing still further.

Although I started this treatment because of central nervous system infection, it now seems as if perhaps only a tenth of the Cpn in my body was actually in my CNSi. There was a fair bit in my cardiovascular system, in my joints, and elsewhere. Or if not Cpn, it was some other bacterium that this regimen is effective against.

Norman, I too have been having increased irregular heartbeats (only on bacteriostatics so far) and some minor chest pain. Cardiac tests are clear so far, and always have been. I am also wondering if you reacted to the niacini which can cause irregular rates in sensitive individuals. Wish you well, Chris CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Zithi 500 mg Tues, Thurs/Doxyi 200mg MWF. All supplementsi.
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.

Norman thank you for relating your treatment and reactions to us.   I think that the moral of your story applies to the rest of us whatever we are suffering from, which is: we don't really know how we are affected by Cpni until we start to treat it.

Often we have visited the doctors offices with symptoms which are frightening and could be serious but dismissed as nothing, possibly because most doctors are unaware of the existence of Cpn and its possible consequences.   When you are young these events are scary enough and often go unexplained but when you get older and you get more of them, both in terms of variety and frequency, they are then usually associated with heart diseasei, arthritis, hypertensioni, which we are told is part of getting old or alternatively due to our poor diet or irresponsible lifestyle.  

Cpn is a parasite, it could not live without you and therefore does not want to kill you quickly.   But quietly without making too much of a fuss it gradually takes over different parts of your body.   Then when we start on the CAPi, it gets found out and starts to protest...And the harder we hit it the louder the protest, at least that is my experience. 

Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

I'm Norman's mom. He's been in obviously better health over the past year, and his experience and knowledge convinced me to start on CAPi a month ago. He's been guiding my protocol, and so far I'm just on minocycline 100 twice a day, along with the Wheldon supplementsi. As Michele points out, it's interesting to see just where CAP will show Cpni-caused disease. I believe I've had a preview of sorts by taking prednisone. In January, before I started CAP, my gastroenterologist prescribed 40 mg of prednisone to kick my inflammatory bowel diseasei into remission. While prednisone is not something anyone would want to take for long, it gave me a sense of how much I'd been putting up with: rather suddenly, my nasal passages cleared, my arthritis disappeared, and my gut became so normal that I realized what I'd been missing for decades. Now that I'm ramping down the prednisone (now at 10 mg) these conditions are returning as the prednisone's anti-inflammatory effects abate. I'm hoping that CAP will eventually get me back to what I experienced with prednisone. Reading the CPN handbook, I'm now connecting my rosaceai and the "walking pneumonia" I contracted in my late teens with Cpn. For the last few days, the minocycline seems to be provoking flu-like effects, with congestion in my lungs and sinuses. Time will tell, and Norman advises me to go slowly with CAP. It's reassuring to have the support this site offers. Sue: started CAP Feb 3 2007 for arthritis and inflammatory bowel disease, with minocycline 100 mg twice daily.
Ulcerative colitis diagnosed 11/05, arthritis, rosaceai; CAPi starting 02/07: minocyline 200mg x 2, azithromycin 250 mg MWF, NACi 1200 mg x 2, pulses of metronidazolei 500 mg x 2 five days starting 04/07. Cured of colitis 11/07.
I can't say that I've noticed much effect of the niacini on my heart, but I sort of presume it has had some. The time when I started playing around with niacin was after the time when I had most of the heart irregularities.
I got a call today from my neurologist: my last liver function test came out elevated. That was a test done on blood drawn a week after the last pulse mentioned above. I'll be backing off a bit on the intensity of this regimen. It certainly has felt a bit excessive.

 As they say, Norman, "Nothing exceeds like excess!" It certainly sounded like a rather challenging protocol this early in the game. I'm glad you have good monitoring so you know when your system is overloaded. Great report.

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

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

That was great reading, Norman, and nice to meet your mom! How delightful that some have the good sense and intelligence to see what is before their eyes and do something about it.

 

Rica PPMSi  EDSSi 6.7 at beginning - now 2.  Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyli  total 43 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Michelle, Great analogy! Cpni gets "found out", then the fussing and protesting. Kind of a Cpn-tantrum as it were. -kk2 :)

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

Yea KK2 I like that, it explains all the problems we have really, a Cpni tantrum, I can just visualise it like a two year old thrashing about on the floor because s/he can't have a cookie...

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Hi van buren, and welcome.  It's amazing that feeling normal opened your eyes to how bad you had been feeling.  How long did it take you to be convinced that what Norman was doing (the CAPi) was something that could help you as well?  I'm struggling with that situation in my own family, but sadly, as they wait to see the long term results for my husband and me, their health will continue to deteriorate. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAP since August 06, antivirals, heavy metals chelation, LDNi, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGi/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce (self)~generally falling aparti (cardiovascular, diabetic, arthritic & a variety of other health issues). CAP since May 07, antivirals, heavy metals chelation, 7-keto, Lauricidin, astaxanthin.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

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