Hoping for a Higher Level

Submitted by katman on Mon, 2007-08-06 11:18

It seems much longer than the 20 days that have elapsed since my adventure in Wyoming. After returning only 3 weeks ago tomorrow, we (Richard and I) began flagyl 2 days later on Thursday night. My own response was the usual short hour until loss of function - a little less than usual - and mental confusion - much more than usual and the lethargy lasting for days. I still have the emotional flatness and great amounts of slow, fuzzy thinking. And the vertigo, something always present, this time in huge waves requiring me to hold on and wait till it passed every time I changed position. Even now, 13 days after ending the pulse, if I move suddenly, I must stop and wait, but briefly now. I look at this pulse in wonder. My walking deteriorated but less than in the past and for the first time I had a slight shortness of breath, now gone. It was very different from all the ones proceding it. My hope is that I am reaching a dividing line between the physical repair and beginning a much deeper burrowing into the brain. I have tried several times to extend my pulses with limited success and am almost looking forward (crazy!) to the next flagyl to see what the rewards will be.

 

Rica, I hope you are reaching that dividing line as well - as I am pretty sure I will be in this as long as you have been :). I can't extend my pulses either, I think I skip out on that last pill as I just can't swallow one more. However, I am not at the point that I look forward to my next flagyl. I fell behind schedule this summer and will plan my next one the week before school starts. 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.

Well done Rica... spiralling up to the higher levels.  Though I'm only up to number 15 I have the same feeling now about looking forward to pulses even when the latest one has slammed into me leaving me wiped out, useless and in a panic for a weekend.........only you lot would understand the madness! 

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Higher levels, eh?  So you aren't content with repairing the roof of your barn any more?  There's no stopping you!.......Sarah       An Itinerary in Light and Shadow    Stratton/Wheldon regime since August 2003, for aggressive secondary progressive MS.  Intermittent therapy after one year. 2007 still take this two weeks every three months. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Rica,  Go, go, go!  Now, you climbing up the ladder and repairing the barn roof was exactly what I thought of also...when you mentioned having vertigo all the time.  So you do it now because it needs doing and you are newly capable of doing it.  Aren't you also terrified at the same time by the vertigo?  Mmmmmmm......

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

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Determined yes, pragmatic yes, stupid yes - but not all the time! I do not climb ladders when on flagyl and in its' aftermath. My vertigo was really bad this time but I had no joint aches. My main reason for this blog, as so many of them, is to keep track of progress - one example of the many we are following. If I climbed during flagyl and fell, I would probably put my arms out and try to fly; that is the extent of my common sense during pulses!

 

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 44 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

Sensible to the utmost, unlike Icharus, you know when not to fly...  I appreciate your experience with flagyl pulses.   They seem to change their effect time after time.

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.

VERY good. Very, very good. This lot is proof of what one can 'know' if only one pays attention! There may be no tangible reason for believing something has changed, we just 'know' on some level and I trust that more than the guy with a laundry list of reasons why. SO happy for you, Rica. We ARE a bit weird, looking forward to the next debilitating punch, aren't we?

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

Yeah Rica,

I hope the roof is repaired & you don't venture up the ladder to fly!

Please keep your feet on the ground for the time being "Crazy Goat Lady" Image removed.

Blessings

Ruth

CFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<