I completed pulse 9 last thursday (5 days x 500). I did not increase because of the holidays. I indeed have a pattern. I quess my load is coming down a bit to be able to notice feeling better instead of bad bad bad. It included 2 days of extreme fatigue when that lifts the nuero and pain start. At 6 days post pulse I am out of it and noticing improvements.It was pretty well tolerated so it is time to increase. Unlike my first 3/4 pulses that left me unfunctional for weeks. I actually went all day yesterday and ENJOYED parts of it. We went downtown to watch the people ice skating I even wanted to try (wow).ahhhhh life again My husband just had a thin coat on and was cold so we chose to go out to dinner instead. I talked with the bossman about some concerns I had and this is what he said. easy bruising (common stick with it), platelets rising (common stick with it) menstrual disturbance (also common stick with it. The next pulse I am adding 1 or 2 days of 1000.
Minocin ,zithromax,naci, ,flaygl, supplementsi,charcoal for sjogren's.
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zero negative sjogren's diagnosed 2/03, 200mg minocin daily, biaxin,plaquinel mwf, flagylii every 3 weeks.
Lee, you are doing really
Lee, you are doing really well! Next year, you must do more than just merely think you would like to try ice skating, you must do it, so make sure your husband is properly dressed. You can go out for dinner afterwards.
........Sarah
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Great news Lee, its so
Great news Lee, its so encouraging when you start to notice the good days. Very sensible of you to ramp up the pulse slowly, but I know how hard that is. It is such a slow pocess we really want be better NOW, iceskating NOW, pain free NOW.
Roll on next winter... so we can all go skating!
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 CAPi 16th March 2006 for RRMSi
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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
 Lee, You have fought
Lee,
You have fought so, so hard. I can't tell you how happy I am for you to have some reward. Here I sit, unwilling to move and have this wonderful feeling of vicarious relief end. I recognize this - there is more to come!
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 35 pulses NC USA
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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
Hi Lee, Sounds like
Hi Lee, Sounds like you've turned that corner (pulse 7 to 9). Congratulations on this reward for your determination and tenacity. It's always heartening to hear that yet another CAPer is enjoying life again. Happy New Year to you and your husband.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyli pulses; antivirals; chelation; LDNi.
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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.
Oh good for you! I also
Oh good for you! I also noticed a pattern though it took me until pulse 11 before I could really count on it. Isn't that great? Like you, my first pulses were just lost in the general fog of feeling badly overall with no noticeable "now I'm on good days" thing but once you get it down to a schedule it makes life so much easier.
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"
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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
So happy to hear your good
So happy to hear your good news - and glad everything is getting easier.
Merry New Year!
On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma