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Striking a Balance in CAP Treatment

Submitted by kitkat2 on Thu, 2007-05-03 20:55.
My hamstrings, left knee, and glute's are crying out for a Flagyli pulse, but I am afraid of the deficits in my left hand and parasthesias from the last one. I think this is the longest I have ever delayed a pulse and my knee is very sensitized and irritably swollen to show for it, often giving way beneath me whilst attempting to go about my daily business. I have been able to tolerate 600mg NACi daily now for about three weeks and about 1000iu's of D3/day as well. Lots of muscle tightness and pain, which makes me really wonder about the replicants/EB ratio model. It makes sense to me that the increase in aches and pains[which make ambulation nearly impossible]seem to correlate with the image of EB'si spiralling out of control due to many months of taking doxyi and azith. Hmmm.. About 16 days after the last pulse I had two really incredible days--little to no pain, ambulating better, sharper thinking, even my typing felt so precise; in a way that it has not for years! But like in the story of Cinderella, the coach soon turned back into a pumpkin. ugh... I would love to know what my next step should be. That's the issue...striking a balance between Flagyl doses/frequency and keeping further damage to a minimum. Ah, the eternal question. -kk2

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Began Wheldon Protocol for rrmsii October '05.  Currently OFF all abxii since June 26, '08 due to severe porphyriaii. Added LDN 4.5mg qhs October '07.  All supplementsii.

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 kk2- do remember that

Submitted by Jim K on Thu, 2007-05-03 22:49.

 kk2- do remember that you've upped the ante with the NACi and extra D, which may be adding to a more constant die off effect. I really can understand your trying to find the balance. You might factor in the possibility of doing a shorter pulse, or lower dose one, as the effect might be enhanced by these other measures anyway.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyli daily (Continuous protocol)

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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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Thanks Jim k! I agree with

Submitted by kitkat2 on Thu, 2007-05-03 22:59.
Thanks Jim k! I agree with you there...and I must say that the VitaminC flush certainly helps with all that. I try to fit in activated charcoal when I can...usually at around 5am.--lol! Right now the shorter pulse idea sounds best, it is sort of what I have been doing already. kk2 ;)

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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Began Wheldon Protocol for rrmsi October '05.  Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07.  All supplementsi.

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KK2, Ella and I were taken

Submitted by Michele on Fri, 2007-05-04 06:32.
KK2, Ella and I were taken by surprise by the effect of extra Vit D had on her ability to get around, in fact the one week's holiday in the sun which upped her daily dose of VitD from 4000iu to 14000iu caused the worse set back she has suffered since coming out of hospital and had us doubting the CAPi all over again.   She was practically bed ridden for a week again.   Very frightening, but she has recovered well from that.   We gradully increased the VitD to 6000iu and held off a pulse for 6 weeks, and now having restrated the pulses she is able to cope well, with only temporary balance problems.

Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 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

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KK2, yes, shorter pulses

Submitted by Sarah on Fri, 2007-05-04 13:20.
KK2, yes, shorter pulses must be he way: you should only ever do them for as long as you feel you can stand.  Its not like taking the bacteristatics, which you have to carry on with until the infection is banished, or else risk it developing resistance.
 
I don't think EBs do spiral out of control just by taking the two bacteristatics, since one can eventually clear the infection just by taking these.  It just takes a damned long time........Sarah
 
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.

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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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I was reading through your

Submitted by Annette on Fri, 2007-05-04 14:26.
I was reading through your post and seemed to recognise so much of what you described - poor ambulation, pain and spasticity (I think if my knee gets any tighter it will snap) but I never knew that those are signs 'crying out' for a flagyli pulse. Do those symptoms have something to do with the infection? I just assumed my MS was getting worse. I need to read up on so much. I hope at the end of this there is a glass slipper waiting for you and that more importantly, it fits! Began CAPi Oct/06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.

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Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.

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KK2, Gosh it is a hard

Submitted by mrhodes40 on Fri, 2007-05-04 15:58.

KK2,
Gosh it is a hard decision to know what to do. I am doing much more tinii nowadays myself
Michele was Ella's recovery quicker than it was for the big one the year before? Was the d induced pseudoexacerbation now seen in retrospect different than that terrible one and how? Will you make a nice blog about that? Pseudo exacerbations are important to talk about I think especially as they fade away and they can be seen in light of time. In the midst, yep, "It's not working!" is all you can think
Annette
Not everyone has such exact symptoms as a reminder that it is time for a pulse, that particular symptom is KK2's way of knowing she is ready. I do not have the same symptoms in that way but am probably pretty similar in terms of funciton/ spasticity as KK2. About pulse 11 or so for me personally I began to feel a kind of pattern and recognized that after a pulse I got a tiny bit better--just a smidge--and that when that faded for me it was time for a pulse again. I get that feeling about 10 days after a pulse now. BUT it took me to pulse 11 to get that and you'll get that after time as well. It may be that you find your poor ambulation, pain and spasticiy is the thing that returns and makes you feel ready for the next pulse, but only you will be able to answer that in time.
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) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines

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Annette and Marie,

Submitted by kitkat2 on Fri, 2007-05-04 18:24.
Annette and Marie, Interesting points made. Just to clarify even further, My knee became my 'achille's heel' several yrs before my msi dx. It was passed off at that time as a tennis injury, however, the toxic feeling that accompanied it[nausea, fatigue, hot swollen painful joint] was always allayed at least temporarily by a 14 day course of Ceftin for my recurrent sinusitis. Somehow I surmise these are inter-related. Annette, I suppose time will tell what your achille's area is. -kk2 :)

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

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Began Wheldon Protocol for rrmsi October '05.  Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07.  All supplementsi.

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KK2, You are amazing and

Submitted by katman on Fri, 2007-05-04 20:39.
KK2, You are amazing and tough! Please let us know in a couple of weeks if you have even a very few hours of feeling good. Not only do you deserve them but it seems to me that that is part of the pattern. A few pulses ago, 37, 38 or so, my hips were hit and were agonizing for days afterward. This went on for several times and this time just some mild achiness - and brand new - my left thumb which has been sprained several times in my life. Lighten up on the flagyli a little. I could never handle a full dose except the first one; after that I always have used 375 mg. 3xd 5d.

 

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. flagyl  total 42 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 52 pulses LDNi Rifampin 8/08 again NC USA

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KK2, I am with you. I had

Submitted by kcapozza on Mon, 2007-05-07 11:06.
KK2, I am with you. I had to wait 3 extra weeks before starting this pulse. I am peeing my pants all the time now and my vision issues go up and down. I had to stop my 1000ius of D3 in order to stop the vision disturbances but on Saturday I decided to lay out in the sun for 1 hour with only my arms and face exposed. Well that night I peed my pants and had major insomnia and a panicy like feeling. I am up to 600mg of Naci, and I am going to stay there. I don't even know when I will be able to start the D again. I just decided this morning to start my pulse. I am scared too. My husband asked me to shop for new cushions today and there is no way I can leave the house. On a positive note... at least we know this CAPi is doing something! Good luck and let us know if you do decide to do the pulse. kc

start doxyi/azith 10/05 Start tinii 1/06 switching to flagyli slowly since it seems to provide people with most physical improvement

dx ms

Now at full flagyl pulse. (1000mg x 5 days) Having trouble getting the Nac up from 500mg per day. Ldni si

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dx msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

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For KitKat, Kcapozza and

Submitted by Sarah on Mon, 2007-05-07 11:20.
For KitKat, Kcapozza and everyone who has trouble with taking both vitamin Di and NACi at the same time: while you are on full-time CAP, take the D in preference.  Leave NAC until you have moved onto intermittent protocol or you find you can tolerate both together.  I didn't take NAC at all until I was on intermittent, but now use it nearly every day to guard against reinfection, which isn't a possibility whilst taking doxycycline and the others........Sarah
 
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.

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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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