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Will the third time be the charm?
By hdwhit
Created 06/02/2008 - 12:25pm

  • Azithromycin
  • Doxycycline
  • Flagyl
  • Multiple Sclerosis

Well, metronidazolei [1] pulses seven and eight produced no noticable reaction.  I start pulse number nine today (I leave for Houston tomorrow; hopefully I won't end up in Hermann Hospital's ER - lately I've managed to break that annoying habit I had developed of touring the nation's Emergency Rooms).   Maybe this pulse will bring the return of Dame Endotoxini [2], Mistress of Pain.   It's not that I want to suffer as a consequence of a pulse, but the reaction was at least confirmation that the CAPi [3] was killing something other than a whole bunch of intestinal flora. 

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazole started 6/2/2008.

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CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week).  Sixteenth pulse metronidazolei [1] + INHi [5]i [5] completed 12/20/2008.

You're about to visit my

Submitted by Jadis on Mon, 2008-06-02 22:40.

You're about to visit my city! Warning though, summer is here in full force and it is hot and humid. I'm impressed that you can travel and pulse. I have to plan around my schedule because my inflammationi [6] personality is too much.

 Maybe your decreasing reactions to Flagyli [1] are a sign that you've significantly decreased your bacterial loadi [7]? Have good trip!

 

Houston, TX. RRMSi [8] since 12/05. Started antibioticsi [9] 12/06.

Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi [10], slowly pulsing with Flagyl

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Houston, TX. RRMSi [8] since 12/05. Started antibioticsi [9] 12/06.

Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi [10], slowly pulsing with Flagyli [1]

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HD, if you are not noticing

Submitted by Michèle on Tue, 2008-06-03 03:06.

HD, if you are not noticing any reactions to flagyl, have you thought of maybe increasing the number of days you are doing a pulse.   A reaction is not necessarily what you would call pain though, some fuziness, lethargy, darker urine, itchyness etc... All these could be reactions.   The fact that you are not touring ERs any longer is a testament to the effectiveness of Flagyl in your past experience, but not a criteria for its effectiveness now.

Another alternative would be to test yourself with Rifampicin, if you can get your doctor to prescribe it for you. 

Take care on your travels...

Michèle (UK) GFAi [11]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [12], Azi MWF, metroi [1] pulse. Zoo keeper for Ella, RRMSi [8], At worse EDSSi [13] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

___________________________________________________________

Michèle (UK) GFAi [11]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [12], Azi MWF, metroi [1] pulse. Zoo keeper for Ella, RRMSi [8], At worse EDSSi [13] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

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Can't get a scrip, but I

Submitted by hdwhit on Tue, 2008-06-03 12:52.

Can't get a scrip, but I have heard about this internet pharmacy in Thailand... 

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Eighth pulse metronidazolei [1] completed 5/10/2008.

___________________________________________________________

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week).  Sixteenth pulse metronidazolei [1] + INHi [5] completed 12/20/2008.

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Hi HD, I am glad you are [14]

Submitted by ruthless1 on Tue, 2008-06-03 14:43.

Hi HD,

I am glad you are doing well.  Perhaps your lack of "reaction" is because you are handling the die off with your supplementsi [15] & Moppers.  Are you on a full dose of NACi [10] & are your pulses full strength already?

As others have said though, these pulses are up & down!  Take care travelling, this additional stress may exacerbate the pulse.

CFIDSi [16]/ME 26yrs, FMSi [17], IBSi [18], EBVi [19], CMV, Cpni [20], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi [16]/ME 32 yrs, FMSi [17], IBSi [18], EBVi [19], CMV, Cpni [20], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [15] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [1]/day-3 days

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HD Pollyanna here. Have you

Submitted by Louise on Tue, 2008-06-03 17:49.

HD Pollyanna here. Have you noticed any vage and sundry improvements in any aspect of your life since you are approaching the 1st year marker this summer?

This is not a criticism of you but a question I perhaps should be asking somewhere else in a thread of it's own.  Why do some of us feel that they must experience negative reaction to confirm that the CAPi [3] is working?  This is a slow and steady process and cannot really be rushed as I understand. 

For me just feeling stonger, clearer and more motivated is huge and I am loving it for now.  I make incrimental improvements and have done less pulses than yourself.  I am enjoying full 5 day pulses that are not earth shakingly awful.   Sometimes I wonder about the effects of flagyl metronidazolei [1], vs tinidiazole (tinidamax, fasigyn), do I really need to feel worse to know it is working better?

Sarah talks about improvement over time and not much talk about how bad pulses were yet she improved neurologically.  I have no obvious neuro impairment so I can hardly full appreciate the situation for those that do.  Except for fallimg off the second to bottom step twice the first I broke my foot.  The second my husband watched it happen from behind and well from his description it could have been neuro. 

So I remind myself that I am in for the long term, another 2 - 4 years at least and if this is what it takes to feel at least more lucid much of the time then that in itself is worth it. 

I expect that this comment should bring on a mutitude of varying views!  Thanks for leading me to this reply and this question HD.  I enjoy your posts. 

Louise USA.CFSi [21].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [10],Doxyi [12],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [22]. 

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Louise  CFSi [21],CPNi [20]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [23] +fattyEndotoxins HS PRN, Wheldon CAPi [3] 6/07,all supps, Doxyi [12] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

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Yes, previous pulses have

Submitted by hdwhit on Fri, 2008-06-06 10:29.

Yes, previous pulses have been a total of 1,500 mg metronidazolei [1] (six 250 mg tablets, taken two at a time, three times a day) for five days. 

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Eighth pulse metronidazole completed 5/10/2008.

___________________________________________________________

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week).  Sixteenth pulse metronidazolei [1] + INHi [5] completed 12/20/2008.

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I certainly don't consider

Submitted by hdwhit on Fri, 2008-06-06 10:47.

I certainly don't consider your question to be criticism.  

Yes, I have had some modest neurological improvements and I do attribute them to the CAPi [3]. 

I can only speak for myself on this, but the reason I expect an adverse reaction as confirmation that the CAP is working is 1) I had significant adverse reactions early on, 2) the near-sudden disappearance of those reactions was/is unexpected, 3) in the protocol, Dr. Wheldon acknowledges that some cases of MSi [24] may not have a bacterial cause, 4) although I have been highly compliant with the treatment schedule, the possibility of treatment failure must be acknowledged, and 5) as an engineer and accountant, I want confirmation; I want a receipt.  The adverse reaction serves as confirmation that something is happening.

Gee, that last line sounds like it could be something from a C. S. Lewis book.  Still, I didn't start this post to discuss religion.  If someone wants to talk about religion or philosophy, they can send me a private message. 

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Eighth pulse metronidazolei [1] completed 5/10/2008.

___________________________________________________________

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week).  Sixteenth pulse metronidazolei [1] + INHi [5] completed 12/20/2008.

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  HD said "In the [25]

Submitted by Sarah on Fri, 2008-06-06 13:12.
 

HD said "In the protocol, Dr. Wheldon acknowledges that some cases of MSi [24] [24] may not have a bacterial cause."  Does he? He hasn't told me.  I do know he says that MS is multifactorial but has CPn as the precipitating cause.  Louise is right in the way that I reacted and I might not be able to climb the north face of the Eiger, but so what?  I might slip fall off.............Sarah

An Itinerary in Light and Shadow...........

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi [13] was 7, now 2, less on a good day.

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [24] in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi [13] was 7, now 2, less on a good day.

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I was referring to the

Submitted by hdwhit on Sat, 2008-06-07 11:29.

I was referring to the comment about autoimmunityi [26] persisting autonomously.  Unfortunately, I based my comment on memory rather than going back to the original reference.  My comment was wrong.  

If halting disease progression is all I can get from the CAPi [3], then I will take it (and praise Drs. Wheldon, Stratton, Sriram and their colleagues), but I am concerned that the absence of reaction to the flagyl pulses this soon means  I may not have gotten that.    

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Eighth pulse metronidazolei [1] completed 5/10/2008.

___________________________________________________________

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week).  Sixteenth pulse metronidazolei [1] + INHi [5] completed 12/20/2008.

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  HD, I hope I didn't [27]

Submitted by Sarah on Sat, 2008-06-07 12:18.
 

HD, I hope I didn't sound too abrupt.  I stopped getting any reactions at all before you did, never mind flagyli [1], but everyone is different.  I am still improving slowly even now, a year since I  completed the protocol.  Its too soon just to stop, but you could either just carry on like me or try something stronger, which ever you prefer.

My latest improvement which I will have to ad to my blog soon, is that yesterday I asked DW to dismantle a system he put on my easel to allow me to rest my arms while painting upright: a sort of multidimensional mahl stick. It was very helpful four years ago but now was becoming an encumbrance.  To replace it, I have found a perfect mahl stick in an old trekking pole with a derby handle: much better than the real thing, useless as a trekking pole.................Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi [13] was 7, now 2, less on a good day.

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [24] in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi [13] was 7, now 2, less on a good day.

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Not at all.  My statement

Submitted by hdwhit on Sat, 2008-06-07 18:46.

Not at all.  My statement was incorrect and you had to make sure it didn't get accepted and picked up by other readers.     

I have written many posts urging people to select one of the protocolsi [28] and follow it until they had enough experience with it to have a "baseline" before they started to "tweak" it.  In my case, I don't feel that 10 months experience is enough so I will carry on.  If don't carry on, what am I going to do with 300 Doxycycline capsules that have a June 2010 expiration date - feed them to someone's ailing pet bird? 

I had to do a yahoo search to find out what a mahl stick is and what it is used for, but now that I know, the fact that you found the multi-dimensional one to be a bother is a really inspiring testimony to the degree of improvement.       

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazolei [1] completed 6/7/2008.

___________________________________________________________

CAPi [3] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [4] (3 x week).  Sixteenth pulse metronidazolei [1] + INHi [5] completed 12/20/2008.

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