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Pulse Milestone: #20

Submitted by kitkat2 on Fri, 2008-02-15 01:01.
Finishing up pulse 20 this week. One pill each day X five days. I can manage it. Pulse 19 in Nov '07 was a whopper[3X/day, 5 days]. The burning myalgia, strep-throatish aches, mild fever and spasticity sent me searching for my dusty old bottle of Baclofen....and ibuprofen. It easily took two months to recover to baseline and during that time I lost huge clumps of hair on a daily basis. Sarah will want to know that I had to clean the shower drain for the first time in two yrs. In other words it was clear that there was a lot of die-off. A. Lot. Following my capi doctor's advice I really hit the supp's, adding oil of oregano in Oct. '07. I take it along with alpha-lipoic acid,acetyl-L-carnitine, healthy trinity[probiotic], bromelain/quercitin, co-Q10, evening primrose oil, b12, 2:1 Cal/Mag, vit C, B-complex, cranberry caps, L-glutamine, and vit E w/ selenium. Hope I didn't omit anything. I have avoided the NACi flu long enough and try to get one 600mg cap at least every other day which is a start. My extreme reaction to it feels like strep with mild fever and the whole bit--really run down feeling and so tired that I feel drugged. My BP gets really low too which only adds to the agony. I hope I will eventually be able to take the recommended 1200-2400mg per day. More proof to me that I will need to stay the course for years to come. -kk2 :)

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Wheldon Protocol for rrmsii since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGii's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

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I'm so happy to hear this!

Submitted by MacKintosh on Fri, 2008-02-15 02:09.
I'm so happy to hear this! You're tougher than you know. And, Sarah, I've seen this hair she's talking about; she has a lot of it! Had. Will have again... Is it growing back in? Put your fingers in near the scalp before you wash it and check for a lot of short hairs all of the same length. I noticed it by accident, two to four months after the fallout. Once it really gets going, it's too long to find the 'new growth' with your fingertips.

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

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 kk2- your persistance is

Submitted by Jim K on Fri, 2008-02-15 07:54.

 kk2- your persistance is paying off in such clear reactions. I can really identify with the impact of dealing with a heavy load. Glad to see you made it through this milestone!

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 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

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KK2, Way to go - it must

Submitted by wiggy on Fri, 2008-02-15 07:59.
KK2, Way to go - it must feel good to get to #20! Maybe the swallowing of tons of supplementsi will help with all that die off. Is your dad back home? Can you reschedule your walkaide appointment? 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

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Hi kitkat, I can relate to

Submitted by garcia on Fri, 2008-02-15 09:08.

Hi kitkat,
I can relate to the long pulse. My first took me almost 2 months to recover from too. Since then I've been too chicken to really ramp it up, but I know that those pulses are the most productive.

I love oregano oil - really soothes my digestive tract. Presumably you are taking it for yeast?

Like you I've been avoiding the NACi flu. Your reaction to it pretty much matches mine. Guess I'm running out of excuses not to take it.

CFSi. Started CAPi 03-07.
Currently: Azithro+Roxi+Doxyi. 7 Pulses done. Welchol 4xday. Sauna every other day. D 7200IU

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Hunter: Don't think - experiment

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KK2, It is so good to see

Submitted by katman on Fri, 2008-02-15 09:58.
KK2, It is so good to see you back on the site more! You are a veteran with long experience which benefits those who are just putting a toe in the water. I am wondering if you will have a day or two of glorious improvement, which sometimes is hard to see when we have such a long road ahead. We have to pay in advance, sometimes a very stiff and brutal price, for a very small return - a little like hoeing all day on your neighbors farm in the corn field for a bucket of ears of corn to take home, clean, cook, and have for dinner - the corn is sure good, though. Did your dad make it to where he was going?

 

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 49 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

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Hi KK2, great to see you

Submitted by Michèle on Fri, 2008-02-15 10:07.

Hi KK2, great to see you have to staying power... It is so hard at times to continue this treatment when all you get is grief.   But hopefully, little by little the grief will get less and less...

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 6.5 Wheldon CAP 16th March 2006

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  KK2, you certainly are

Submitted by Sarah on Fri, 2008-02-15 10:23.
 

KK2, you certainly are tougher than you know.   Also I remember seeing a picture of you and your hair: I'm sure it will grow back as luxuriant as then and cleaning out the shower drain will again be a rare event.

I'm very glad you have taken the NACi plunge at last and hopefully you will be able to build up to 1200-2400mg a day.  With all the other things you are taking though, it isn't really essential to do that until you get around to doing intermittent treatment.  I had never even heard of the stuff until nearly 18 months after starting abxi and when I started it, a few days of a very runny nose was all I got, then nothing, so  most of the EBs cleared without either it or amoxicillini.........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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KK2,  A very forthright "I

Submitted by cypriane on Fri, 2008-02-15 13:04.

KK2,  A very forthright "I can manage it."  Fantastic!  Somehow I missed that you got a CAPi doc?  When did that happen?

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAP 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. 

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Congrats KK2 It has a nice

Submitted by ruthless1 on Fri, 2008-02-15 13:44.

Congrats KK2

It has a nice ring - #20!!

weeeeeeeeeeeee

So glad you are taking it a little easier on your pulses now.  I am in AZ at the moment.  AS the weather here agrees with me more I getting up the nerve to do a bigger pulse for lucky #7.  I really want to build up my walking as well without crashing so....wish me luck.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, 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, 2-6-08 6th pulse 1 X 375 mg 5day

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

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The difference between what

Submitted by MacKintosh on Fri, 2008-02-15 18:07.

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

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KK - Congrats on being able

Submitted by Daisy on Sat, 2008-02-16 13:24.

KK - Congrats on being able to persist with therapy!  20 pulses WOW!

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/07.  Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxyi, Azith

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

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