Cpnhelp.org

John,Good luck with your pulse!

Hope everything goes well and you continiue to feel better.

Best Wishes from Maria

___________________________________________________________

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat

Keeping my fingers crossed for you John.

___________________________________________________________

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Maria, Michele         

Thank you both for the well wishes.  I'm half way through day two and things are going fairly well so far.  It does slow me down some, enough so that I need to be careful walking and moving around but not so much as it did on the last pulse, yet.  As I recall, the first couple of days of that pulse weren't much different then this one.  I didn't see coming what happened, it was completely unexpected and a surprise.  I'm not looking forward to what tomorrow may hold, it will be nerve racking to say the least but I'll get through it, either way.  I've already recieved permission to work from home if I need to so I won't be completely out of touch with the world.

As a friend of mine pointed out, what I'm going through is to be expected, particularly for someone with MSi.  Up until August, I had it easy and I know it.  I think the increase in dosage triggered this reaction.  I went from 3x375/day to 3x500/day.  I think that must have pushed me over a saturation hurdle with Flagyli that I wasn't getting past before.  Not pleasant but if it gets me where I want to be, so be it.  I will do what I have to do.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

John, It was proably the increase in dosage that finally pushed you into reaction. Have you always done 375 x 3 or the full 500? I did 1500 x 5 only on my first pulse and said "never again!". But my weight is 111 pounds, whereas yours is a bit more. So this may be the answer to my wondering why you haven't had a reaction even on Rifampin. I understand concrete legs, now gone forever, I hope.

___________________________________________________________

 

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 55 pulses LDNi Rifampin 8/08 again NC USA

Katman    

Yes, before July, I had always done 3x375 per the Wheldon protocol every time.  It was only after increasing the dosage that I got the sort of reaction in August that  had never had before.  Much more intense and difficult to handle.  Previous pulses had been difficult but not to this degree, not by any stretch of the imagination.

Yep, concrete legs are always there during a pulse; however, on 1500mg, we're talking some hi density concrete, hurricane tolerant, lol!  Maybe Cheyenne Mountain concrete....not sure how to make the distinction but there definitely is a difference.

So far, I've managed to function on this pulse.  I'm only half way through day 2 though.  In pulse 26, the real problems began on the third day.  I ended up leaving work and taking the week off.  I'm hoping that I'll be more ready and able to endure this one and subsequent pulses.  My fingers are crossed.  I've taken the steps of starting the use of chlorella, vitamin C drops to supplement my normal C dosage in the morninging throughout the day, intense B12 via Dibenocozide, cyanocobalamin, and meythlcobalamin.  Probably upwards of 10 - 15 grams a day.  D-Ribose and glucose before lunch (largest meal).  I'm sure I'm leaving something out but needless to say, I'm doing what I can to mitigate things through this pulse more so than I did with pulse 26.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

John, You have survived the worst this thing can throw at you, I think - your version, anyway. If you can continue to survive, and follow the pattern, you may well begin to see some real improvement. Darn thing takes so long... Please keep us posted.

___________________________________________________________

 

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 55 pulses LDNi Rifampin 8/08 again NC USA

Rica, I'll definitely keep you up to date on how things are going for me.  So far, it hasn't gone the way I have been hoping it would but I know from your advice and others who have gone through this that it's just part of the process.  There are no easy lunches here.  I miss easy lunches, lol, but alas they ran out! 

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

I did leave something out.  I've started taking calcium pyruvate between 30 & 60 minutes before Flagyli in the hopes of teasing the CBs back into RB form.  My hope is to mitigate he impact from Flagyl but theres no way to tell or know.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Day 3 of the pulse and I'm past half way through it!  I'm at work this morning, having managed to shower, eat breakfast, dress, and make it down to my car on my own this morning.  I took flagyli first thing along with 1 gram of vitamin C and NACi so that I might mitigate its impact.  It did enough and got me out the door and in to work today.  I'm hoping that will prove to be the same throughout the day and through the next two days too.  A walker has been a very helpful thing to have right now!

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Great John!
Our paths are similar in that we as individuals really have had equivocal responses to the CAPi. We were also alike in that our initial regimen evoked little in the way of any kind of reaction or difficulty. For both of us I hope a more obvious response to therapy means obvious improvements later! I apprediate you noting that your tolerance of pulses is improving...that is good news! I also am getting to tolerance when it comes to treatment; all week this week I have been taking full doses of clarithromycin, when I started in May I was taking 1/4 a day!

Since this is a developing protocol, we are, I keep reminding myself, pioneers who have decided to go forward and FIND the way. It sounds like we are both getting somewhere now. Thanks for taking time to document your path. I always look for your posts, John
marie

___________________________________________________________
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

___________________________________________________________

Thanks Marie        

I just got back from lunch.  Mexican, 3 chicken enchiladas.  MMMMMMMmmmmmm.  My typical Monday fair for lunch.  Lots of green salsa!

Yeah, I'm making it okay today.  It hasn't been easy but I'm able to struggle along well enough with the help of the walker which I was loaned.  Hopefully, I'll be able to pass it along in a few months when I will no longer need it.  That's the hope anyway, it may take longer than that.

What I find myself wondering is how bad is the infection?  Apparently much worse then I thought!  I still have porphyriai after lunch despite taking a gram of glucose and close to 4 grams of D-Ribose beforehand.  I can only conclude that I must have a much broader infection then I imagined.  I wonder what the 2 years of nearly painless pulses actually did, if anything.  Maybe the buggers weathered that and it simply wasn't enough.  I have no idea.  But on I go, little choice but to continue.

It wasn't until August that I had a substantial reaction to a pulse.  Pulses before that meant heavy legs and a sensation of heat.  I never lost the ability to get around like I did in August.  It wasn't pretty.  A lot has changed over the last year.  Unfortunately, not all for the better, at least in the short term.

A year ago I was going to the gym daily for 2 hours.  I was doing things that I couldn't do now if my life depended on it.  If everything goes as planned, I'll be back there again in another year, two at most.

For now, onward!

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Day four has commenced.  I took my first dose at daybreak (roughly).   I seem to be weathering this pulse better then the last one back in August.  Seem to be so far.  Hopefully, that trend will continue.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Day 4, dose 2 down the hatch!  I'm weathering this pulse much better then the last.  Not sure what is making the difference but there is a difference.  I have been doing some things on this pulse that I didn't do on the last.  Specifically - priming myself with calcium pyruvate 30 - 60 minutes before taking Flagyli.  Also taking 1 gram of calcium ascorbate (a form of vitamin C) with the flagyl and NACi.  Finally, have been taking Halls Defense Vitamin C drops (ascorbic acid 60mg) after taking Flagyl.  It could be one or the cumulative effect of everything that's enabling to get through this.  So far, so good, one day or so left.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

John, We know that Forrest Gump knew all about chocolate and its effect on life, but sure knew nothing about flagyli! Maybe this is your magic dance and combination - did it involve touching your nose three times and your purple socks, too?

___________________________________________________________

 

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 55 pulses LDNi Rifampin 8/08 again NC USA

Hah! I'll give that a shot, Rica!

I'm a major choco-holic so I'd best steer clear of that for now, lol, otherwise risk causing a further economic downturn with the shortage of chocolate supplies here in the USA.

Also, forgot to include Yaeyama Chlorella earlier.  I've taken it 1 time per day while on this pulse.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Day 5 of pulse 27 underway.  I've already taken the morning dose of Flagyli and the other abxi I'm on.  Now for the afternoon Flagyl and evening doses of everything.  Then I'm done with this, this month, thank God.

Thankfully, the pulse hasn't been as hard as pulse 26; however, this morning I woke up with a new suprise.  I had very heavy legs when I first got up which is an indication of toxins in my system.  Thankfully, they cleared out enough after a while and I was able to get going and get to work.  Life continues.

So, onward and upward.  Pulse 27 is winding down, thankfully without too many problems this time.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

John - Great news on surviving this pulse so far ! 

___________________________________________________________

Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

John, I believe it was Dr. Stratton (Jim, correct me if I'm wrong) who mentioned it made sense that the bacteria are affected by gravity, like all things, so an accumulation in the legs and feet is to be expected. It's logical, though maybe not much of a comfort at the moment!

___________________________________________________________

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hey Mac    

Yep, I've been aware of the tendency of gravity to pull the infection downwards since starting to pulse about 2.5 years ago.  I'm pretty sure you, Jim, Sarah, or someone told me about that likelihood a long time ago.  Just more evidence of the same thing going on

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Pulse 27 is officially history!!  Yay!  I got through this one with about the same challenges I was having before starting the pulse, albeit with a little more diffulty with moving around.  But I got through it easier than Pulse 26.  Still using the walker though, still not recovered from pulse 26 entirely, but I'm making it.  Everything comes in time.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Fantastic, John! Maybe now as the post-pulse aftermath days pass, some real recovery of function will begin to peer through the concrete curtain. Of course, about then, it will be time for another pulse. But, after putting in all that effort, we get our reward - and a sweet one it is, even if, at first, it is only whispers.

___________________________________________________________

 

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 55 pulses LDNi Rifampin 8/08 again NC USA

Rica           

It's been fortunate that this pulse went better then the last.  I'm thinking and hoping that the last was as bad as it will ever be, the worst, and the turning point.  I hope so anyway.

I've been getting around using the walker better then I expected.  It's really come in handy but each time I walk with it, I reflect on myself to see if I feel well enough to go without it.  I know I have to be patient and I am but getting off the walker and fully mobile again is a stage I need to get to in order to progress with other things in my life.  I know it may never come but I hope it does and I'll do whatever it takes to get there.

___________________________________________________________

all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08