13 underway

Submitted by farandwide on Sat, 2007-06-09 20:48

Here I am, day 1 of pulse 13.  I'm really surprised at how fast this has really gone by.  It's not just the CAP, it's my life, just swinging on by, day by day, one after the next.  It may be that I'm just eager to get through this, eager to get to the other side and some dramatic improvement.  13 pulses, afterall, isn't a minor effort.  I've been doing this for a while now.

Yes, I know, I'm sounding impatient again.  Really, can anyone blame me.  Don't we all want it to happen sooner than later?  It's just part of the reality of it that it takes the time that it takes, that it can't be expedited.  I'm okay with that, just flailing at it but by no means going to stop.  This is a mission, a goal I won't give up on if there is any chance that it may come through at some point.

Okay, that was my two paragraphs of reflection on the path that's gotten me here.  Onward, looking around, looking forward.

There are couple of things that have popped up lately which I thought I would mention.  First, a symptom I've had with MS is a complete lack of tolerance for heat and cold.  Over the winter, I felt like I was tolerating the cold better.  Now, I think I may be tolerating the heat better too.

In the past, temperatures above 80F have given me trouble causing all of my systems to worsen progressively, the warmer the temperature became.  Where I live, there have been a number of days and weeks where the temperature has been in a range that would have given me trouble but this time it doesn't seem to be doing that. 

Now granted, I'm still paranoid, so I don't push my luck and stay out in it any longer than I have to...but...I have walked around in it, traveling from a parking garage up a street and into a building, and nothing seemed awry.  Even driving around, I've opened the windows and it's felt comfortable where in the past it hasn't.  So I'm likely to take it easy through the summer, but maybe this fall I'll give it more time out in it to see whether or not this is as much of an improvement as I think it might be, hope it might be.

Another thing that's been going on is that I've started taking vitamin K again after running out and not taking it for about 8 weeks.  Bruising disappeared.  I went from obvious bruising to non-existent bruising.  The vitamin K is clearly helping in that regard, no question about it.  As such, I think it might be a supplement that should be part of the CAP supplements.

Now with respect to bruising, I should mention that I've had bruises come and go since being on the CAP, many times, but they don't entirely go.  I seem to have some remaining dark area under the skin...darker than the skin but no dark like a bruise.  It's like the bruise healed and went away, but left a scar under the skin.  This something that's only happened to me, visably, since being on the CAP.  I can only speculate that it's some kind of scar tissue, but....that's not entirely reasonable since the bruise area is always much larger than the point of contact that results in the bruise.  The mysteries continue I guess.

I continue my evangelizing the Cpn studies to people I meet with MS or MS like illnesses.  I met another person about two weeks ago that I shared it with.  She had been working with several doctors who have not been able to help identify the cause of the problem.  I told her about Cpn and pointed her at DW's site and Cpnhelp.org for info and answers.

Plus, a friend with MS that I told about Cpn last winter told me just today that her hair is falling out.  I sent her a link to Michele's blog about hair loss and recovery on the CAP.  We'll see what she thinks about it.

So, on through pulse 13 I go.  I'll keep you posted if I have anything different happen on this one.


John, the temperature tolerance is not the first but an early thing that I noticed, too. Now, 2 1/2 years later, I am sure of it - it was slight as first, but now I'm just cold or hot if the weather is, instead of feeling as though I were freezing from the inside out or dissolving inside AND out from the heat. I believe they are improvements. Keep watching - there will be more.


Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 43 pulses NC USA

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

John, What you describe happens to your bruises, is something that both Ella and I have noticed. We have had bruises on our bodies, particularly upper legs for months. Additionally Ella seems to develop bruises, particularly around her knee joints without actually hitting herself.

I think that David described something of the sort happened to him. He had a motorcycle accident that left him with a bruised ankle? for years. This eventually cleared up when he did the CAP.

I'll consider Vitamin K for Ella.

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

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

Thank you for a very interesting update. The part on bruises was especially interesting as I have been getting them recently round the back of my knees without (as far as I remember) having bumped myself - it's a pretty hard location to bump oneself anyway. I hope you continue to see improvements. Good luck with the rest of the pulse. Began CAP Oct.06 for SPMS. Currently on Doxy/Roxy. No pulses as yet.
Began CAP Oct.06 for SPMS. Currently on Doxy/Roxy. No pulses as yet.

Hey John, excellent point about the CAP and Vitamin K. I'm having some blood work done right now because I have had two episodes of eye bleeding and blood spots under my skin from bumping into something. This indicates capillary fragility that I never had before (although I did bruise easily). Here's what I have been able to find out: Vitamin K requires certain intestinal bacteria to metabolize it or to synthesize it. I wasn't clear on the mechanism--have to do more searching. Antibiotics can kill those friendly organisms.Even though I was taking acidophilous, it may not be the right organism that interacts with Vitamin K. So taking extra K might be a REALLY good idea for all of us on the CAP. I have been trying to eat more green leafy veggies as they have a good amount of K but it is perhaps not enough. Keep in mind that V. K helps blood clotting so if you have a problem with that it might not be a good thing to consider. As usual, ask your doctor to look into it with you. Most of us are taking many supplements that are blood thinners so it seems that extra K might be a good balance. Maybe Mark will chime in here with his expert advice. If my tests come back normal, I think it may be that I need more Vitamin K. I'm also upping citrus bioflavinoids and berries. Glad to hear you are tolerating the heat better. I began to get more heat tolerance at 8 months into the CAP. Now I can sit in a 120 degree sauna for 30 minutes and feel great. Raven CAP since 8-5 for Cpn and Mycoplasma P. for MS and/or CFS

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath