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Sounds like you are beginning to beat the beast at last.   Pleased to hear that the PT is having a good effect.   The pulse do get easier the longer you do them, or at least that is my experience.   But every so often another one comes along which hits you without warning.

Great news 'Wiggy...

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 5.5 Wheldon CAP 16th March 2006

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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 5.5 Wheldon CAP 16th March 2006

Michele said it all so I an just being repetitious here, but I am  thrilled to hear your improvements.   I do remember the first "easier" pulse - it was a ray of sunshine - and I agree that they can come from nowhere and whack you.  But so what! - you've seen some light.  Hi to Mr. Wiggy. 

 

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 48 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

Yay! 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

great news wiggy!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

EVERY pulse is a lucky pulse! (Beats the alternative.)   I'm so glad this one went easily for you! You even SOUND better!

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

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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,  I don't know what an AFO is, but I'm thrilled to read what you wrote, "everything I gain back I keep - I am on my feet more and more but still need to build stamina and work on my gait."  You're up, you're movin', you have a gait---amazing!  Could Wiggy of 2 years ago have imagined this?  Couldn't happen to a better person.  You're kind and warm, yet brave and enduring.  Bless you.

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. 

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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. 

Wiggy - I am so excited and thrilled for you and your improvements!  Great job of persisting with the therapy!

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/10/07.  Minoi 100 BID 9-1,  Roxy 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Diflucan 100mg BID 11-30, Novantrone, Doxyi, Azith

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

Thanks everyone, Michele yes, it appears the pulses are getting easier finally but I will still plan them out as I know they can't all be easy. Mack - Lucky is true - I am glad I am able to do these pulses. Rica - "a ray of sunshine" that is it, I am ready to be slammed by flagyli and it didn't really get me this time. Mr Wiggy says hello, by the way. Joyce, my PT is surprised I am keeping everything I gain - not typical MSi pattern. She just asked me the other day of the name of the med. I am taking. I am up more now and thrilled that everything is getting easier. Its not much of a gait at this time as I am really dragging my left foot. The APO is a foot brace that helps my foot clear the floor. So hopefully with some shoes that fit with my new brace and more PT - the foot will work. Soon I will be able to kick that soccer ball with my left foot :). Daisy, So happy your husband is doing so well - love reading your latest updates! Hi Jim & Ruth! On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl 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.

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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

Wiggy -- it does sound very promising. I am curious about two things you mentioned. The first is pt. When I went to pt before diagnosis they were unable to help me at all. And when my neurologist finally diagnosed me he said I could go to pt but it wouldn't help. So when I have the energy  I go to a trainer at my gym. Also, what is AFO?

 

 

Nancy

 

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.

Nancy - While I don't have them ready to post - there seem to be a fair number of well done clinical studies that indicate that MSi patients who undergo physical/occupational/speech therapy do better recovering function (more in shorter amount of time) than MS patients who do not under go therapy.

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/10/07.  Minoi 100 BID 9-1,  Roxy 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Diflucan 100mg BID 11-30, Novantrone, Doxyi, Azith

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

But Daisy, that's for rrmsi. I suppose my md. said that because I have ppmsi and he never expected me to recover anything?

 

PPMS-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.

You are correct, Nancy. My "brilliant" MSi specialist neurologist told me that he expected me to be much worse - just before he told me to go away. Now when I take my half to mile hikes around our pastures, I frequently kick one of our animal shelter milk bottles-in-waiting that our puppy appropriated ahead of me just because I can. Good exercise, 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 48 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

Nancy - True !   -  but I consider all the CAPi MSi'er's here as remitting MS - - permanently remitting that is! 

To me this means you need new neural pathways to reap whatever improvement if any you get from CAP.  You have to work those areas to get the dendrites, neuron buds and neurons to come up to scratch.  Apparently some dendrite pruning is necessary too for optimal function.

My husband is currently receiving some fairly intense PT (home grown by Daisy) and it's amazing day over day how much higher, further, faster, etc... he can go.  I hmmm the tune to Rocky while he works!  Goodness I hope this improvement holds!

 

 Daisy-Caregiver- Balo's Concentric Sclerosis.  CAP 5/10/07.  Minoi 100 BID 9-1,  Roxy 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Diflucan 100mg BID 11-30, Novantrone, Doxyi, Azith

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

Nancy, PT has always helped me over the years. My neuroi had diagnosed me as RR years ago and refuses to change my category even though I am clearly not RR. He feels the medical establishment gets too caught up in categories. Some things recover and some do not has been my experience with PT. My right side is more responsive than left. What is different this time with repetition I get it. For example, my left arm doesn't straighten out - pt shows me and I can straigten it and keep it straight - it doesn't go back to previous form. It is almost like she is reprogramming me. AFO is a foot brace that they had made for me that is suppose to help left foot drop so I can walk better - correctly. I will be trying to use it now and let you know if it works for me. You need to find the right PT. I actually went out and interviewed places before I started as this is my current full time job. I always have picked a new place over the years to get new opinions. I would fire your neuro if you haven't already and find someone who believes in rehab. as it has been important for me over the years. 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.

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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