Submitted by Nessabear on Sun, 2007-07-08 16:27

Monday 9 July 2007One year on CAPIt's been a year since I started the CAP, beginning with NAC at the start of July 2006. I just read over my 'baseline' entry and some of the early parts of my blog and overall I think I am exactly the same as I was when I started with regard to the ms symptoms. I had been getting a little disillusioned about this over the past week, but yesterday I was thinking that I should be grateful I am exactly the same as a year ago. If conventional wisdom is right and the ms is now progressive for me, then no obvious progession in disability over a year has to be a good thing and the antibiotics may be responsible for that.Despite my initial assertions that I was only hopeful the CAP would help, I have been disappointed that I haven't had any miraculous results. Human nature I suppose. I am certainly not in a position to give away any of my mobility aids as others have been able to do; I guess that was some sort of magical goal I had floating around in the back of my mind. For now, I will try to enjoy the fact that I seem quite stable.Going forward, I am considering reducing the antibiotics to an intermittent schedule for a while just to see what happens. I also may have to stop them altogether if the Tysabri becomes available and I decide to try that. I don't need to make a decision right now, so will defer that for the moment.Sunday 22 July 2007Flagyl pulse 11 completeFinished pulse 11 on Friday. Fairly uneventful two weeks since my last entry. Annie and Vic were here for the second week of the school holidays which really helped, then Kai went back to preschool this week. I've been quite tired with a lot of stiffness in my body, though at my massage on Friday Advaita said my muscles didn't feel too bad. I still feel as though I am slower getting around but I know it's hard to be objective about that. I think I'm looking forward to warmer weather (crazy for a pwms!) but I feel I'll be more motivated to do yoga and get in the spa.Tuesday 31 July 2007So much for being exactly the same as a year ago! My left leg (the 'good' one) is deteriorating rapidly. It now feels the same as the right one and is getting heavier by the day. I am having much more trouble walking and even standing still without losing my balance is an effort. It is now dangerous for me to try to walk even short distances with only the stick; I nearly fell over while picking Kai up at preschool last week. I now feel that I must have constant support on both sides while walking (i.e. the wheelie walker).I spoke to my neurologist today to ask about another course of prednisone but he said I should wait until September. The application for Tysabri will go back to the Pharmaceutical Advisory Board (PABC) very soon. I have written a letter that I will give to my local MP when she visits our community this Friday. In the letter I ask her to do what she can to get Tysabri included on the PBS. At this stage, I am getting desperate and feel it is my last option before the final descent into a chair.Tuesday 14 August 2007Flagyl Pulse 12Started Flagyl pulse 12 yesterday, which will be my last one. I am going to use up the antibiotics I have left but I won't be continuing after that. My left leg is now worse than my right and I am dragging my body around the place leaning very heavily on with the wheelie walker. I've been in contact with the MS Society who are putting me in contact with a local OT and physiotherapist to get advice on a wheelchair.I guess as I won't be on the antibiotics anymore I won't be adding to this blog so I will say thank you to everyone here for their knowledge and support while I've been here.Best wishes and good health to all.

Venessa, a year on this treatment is not a long time, some people have been lucky to recover in that time, but there are as many and maybe more who have not; yet a year on, they too are stable, or making gradual progress.   My daughter is one of them, so don't give up you may be just coming up to a turning point...  Look at Rica and Willow...

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.

Thanks Michele,

I'm not giving up yet!

Vanessa :o) 

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa,
I am with Michele, do not give up as you are about with me - just a little ahead on pulses. It is my understanding if we were to follow the protocol exactly (every 3 weeks flagyl) we would be at pulse 18 or so (have not really done the math) at the end of a year. I will be lucky if I have done 12 pulses at the end of one year on all 3 meds - doxy, zith and flagyl. I will also have to sell my MD on this as she is going by the calender as well and thinks I should be done in Sept.
When I started treatment, I thought I would be done in a year but I am ok to keep at it. I also have not given up any mobility aids but hope some will go away and if not - at least I do not have to buy more. We were talking about buying one of those swing lifts to get me around house before I started treatment and I was dreading the thought of that.

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

I am reminded of the old chestnut, "Slow and steady wins the race". If the antibiotics aren't hurting, if the antibiotics may be helping, why stop or go intermittent on the antibiotics? March on! (Don't I sound like Sousa music should be playing in the background?!)

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

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

Wiggy and Mackintosh: thanks for the encouragement. I intend to keep going with the CAP at this stage.

Vanessa :o) 

On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

Vanessa :o) On Wheldon protocol since July 2006 for SPMS (EDSS=6 to 6.5).

That little breeze is my sigh of relief!

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

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

Hear, hear...

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.

Vanessa, two questions:

1. apart from your legs has any other part of your body shown improvements or deficits since last year.

2. Have you considered what may be going on in your gut.   See Cypriane's latest blog on Steve's difficulties...

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.

Vanessa, I am really sorry to see you go, I hope things will improve for you with other treatment.   Is there any chance you could get a new MRI, to see what the situation is.   It is so difficult to tell what our status is in this treatment.

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.

Oh Vanessa, I am so sorry this did not seem to work for you. We all wish you well.
marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Keep in touch and let us know how you are doing!

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.