Cpnhelp.org

My thoughts and experience are all in line, too. Many of us are simply too foggy, especially for the first year or more, to do much of our own thinking, even should we arrogantly believe that we could do better than those who have made this their life's work.

  By following the protocol and supplementsi very rigidly, NEVER missing abxi and only missing supplementsi a very few times, I have most of my life back. I am now on Day 5 (YAY!) of pulse 55, so it will be six or seven weeks before I gain the full benefits of the surprisingly grueling five days just passed. The rewards of patience are enormous. Rica

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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

> If so, then what should we do when someone posts about "the protocol" and it turns out they meant some other procedure entirely?

Post a strongly worded reply and leave it at that. IMHOi its not worth making a big deal out of.

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Hunter: Don't think - experiment

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all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

FarAndWide, I agree that censoring is drastic, and not entirely in the spirit that we cultivate here. On the other hand, there are a number of us who have noticed the problem.

 Maybe a flag like they use on Wikipedia -- "This article doesn't meet our standards" or "This needs clean-up", especially in those areas that we mean to be definitive: The Handbook, Getting Started, Research Articles.

It's less important in the forums, I guess. That's what makes them a forum.

Of course a beginner might not know who is authoritative in this arena when they post a strongly-worded reply. So, they're reading this long list of posts about the protocol not working, and they see one strongly-worded response --  how do they know which to believe? 

I'll offer here my idea of a minimal description of the Wheldon/Stratton Protocol --

 It uses two macrolide antibioticsi simultaneously to block both protein synthesis pathways, and a bactericide to damage the CPni. This may be followed when tolerated by use of rifampin to eliminate the last traces of the bacteria.

If you haven't done that, you haven't done the protocol.

Now, if I messed up that definition, please jump in. I don't want to make things worse!

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

If someone were to take it upon them self to police this site, it will lose all value imoi.

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Malcolm

Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.

Censorship is not the answer, but we do self-police here pretty effectively. I'm for a combination of the last couple of suggestions.

When we see a questionable reference to use of the capi, how about any one of us posting a standard disclaimer, asking, "Are you sure you used two of this and one of that for a period of however long, including NACi and Vitamin Di..."  Now we need to agree on the standard disclaimer!

I've frequently thought it would be nice to limit newbies from pontificating, as if they were veteran cap patients. (Asking questions yes, and relating their experiences, yes, just not pontificating.)  Of course, it's not possible, but it would keep those perusing the site from being totally confused by posters who are still totally confused themselves!  But life is imperfect and that's what keeps it interesting.

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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

Mack -- censorship is abhorrent to me. I guess it's better to put the forums out there "warts and all" than to edit them into something more flattering for the CAPi -- even if it would also improve the accuracy.

I hate to see people turned away from a valuable tool because of misinformation posted by people who:

• didn't actually use a CAP
• gave up because they didn't take the necessary precautions to minimize the discomforts, or
• don't know that they don't know.

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

IMOi it would be entirely wrong for someone"to take it upon them self to police this site".   We have become a considerate community where not one single person takes reponsibility for anything.  

I agree that we should apply gentle pressure on people who are not used to the way we do things here to make sure that others are not mislead in any way, and we should make every attempt to prevent misinformation or strongly biased opinion not backed up by experiential or researched evidence.

But we do all this already....

It's maybe an idea for us to agree on a statement of what an acceptable protocol can be called a CAPi, should we need to remind people of it.

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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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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

Paron wrote:

"I'll offer here my idea of a minimal description of the Wheldon/Stratton Protocol --

It uses two macrolide antibioticsi simultaneously to block both protein synthesis pathways, and a bactericide to damage the CPni. This may be followed when tolerated by use of rifampin to eliminate the last traces of the bacteria."

Just a small clarification: we use one of the tetracyclines (doksycycline), one of the macrolides (azithromycin, clarithromycin, or roxithromycin) and do pulses with nitroimidazoles (metroi, or tinii). Some people on the Polish equivalent of the Cpnhelp organization are using two different macrolides together, and it works, but it is not exactly what we would call the Wheldon's, or the Stratton's protocol.

I run into the problems of adherence, or "modification" done by a patient quite often.

A good "signature" at a bottom of a post is very important.

Barbara

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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.

Barbara, Paron, Jim...

...Mac, Michele, et. al.  I am in agreement about censorship.  I think a combination of things would be a good approach.

Here is what I picture as an approach that may address all issues...

1. New people are sent a message explaining how to add a signature and what to put into it.  In addition, the need to keep it up to date over time.
2. There are multiple combinations of antibioticsi which may be used within a CAPi.  Some used less often, some more.  We need a section that spells these possible combinations out and illustrates the use of a tetracycline with a macrolie with a, etc., etc.  This is not to say what a CAP must be but to say the overall guidelines of what consitutes a valid anti-Cpni CAP.
3. We need a way to flag a forum topic, much as Paron suggested.  I propose a flag based on usefulness or controversy, maybe both.  I think Paron mentioned that Wikipedia does this sort of thing.

The only thing I see with any of it is that treating Cpn is a moving target.  We're involved in exploratory treatment for a number of different conditions related to Cpn.  We do not want to speak in absolutes because as this evolves, things change, new things are uncovered/discovered.  The point of what we do is to ultimately get to the bottom of things but I believe we have a way to go still, so taking the position of guide is better I think.

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all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

John,

1 is already being done.   I send a message to all new members explaining a few things to them including how to compose a signature etc. and how to post a blog.  

2. There is a chart on this site that gives possible alternatives to ABXi. But frankly there are so many variables that could constitute a viable CAPi that it becomes increasingly complex and dependent on people's different reaction to various agents.

3. I agree that a flag may be a way of alerting other members that there is something going on that needs their attention...  At least as long as it does not monopolise people's attention at the expense of other people needing help or attention.

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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

Michele      

I was pretty sure that 1 was being done, I just didn't know to what extent.  I think from your response that you may have been involved with it and if so, many thanks!

I do know about the chart.  The one problem is that it's just a chart, not examples of how different things can be combined.  Maybe examples go too far?  Maybe that bridges into medical recommendations too much?  I guess I'm of the mind that those of us here are largely here because we know about the possibility of using a CAPi so I'm not sure that it would constitute more then just education about alternative medicinal combinations.  For example, minocycline and biaxin instead of doxycycline and azithromycin.  Just something that says combinations of A with B are valid combinations.  Do we have that already?

I do think the flag is a good thing to consider.  I have no idea if Drupal already has that sort of functionality?

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all my best

John

RRMSi/EDSSi was 4.5, 5, now 6 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi 300mg/daily 03/17/2008 stopped 05/08

Thanks for the correction, Barbara. I think your definition is abstract enough to include many combinations of drugs, but exclusive enough to prevent misuse of the term.

All -- My motivation for starting this discussion is to prevent people from presenting "straw man" arguments against the protocol -- using the term for some unproven, simplistic approach, then panning the entire concept when their implementation doesn't work. As Barbara says, "I run into the problems of adherence, or 'modification' done by a patient quite often." I know that it is nearly impossible for people to be totally consistent -- it's not in our natures.

I have no objection whatever to people presenting alternate therapies, but I don't think it is helpful for them to present them as a CAPi-equivalent when they fail to meet even as broad a definition as the one Barbara corrected. Some of the therapies posted here demonstrate that the poster has no concept why the protocol is structured as it is. They have made "minor" modifications (in their uninformed eyes) that render their efforts futile. If they acknowleged that they didn't try a CAP, then fine, but often that's not the case.

I don't believe in redacting posts, but flagging them as "suspect" or "non-compliant" or "experimental" or "not a CAP" seems like a sensible precaution to take. 

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

For an example of a forum that offers a rating system that seems to work: http://ubuntuforums.org/showthread.php?t=988483

Notice the left hand "signature block" -- readers can assess the poster's experience and helpfulness at a glance.

 I don't know if that would work here, but it's an example of what can be done.

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

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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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Hunter: Don't think - experiment

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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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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

garcia -- in a system like the Linux Forum uses, we are all watchers, and we are all watched.

Michele -- my bad French is fairly current, but my bad Latin is even deader now than when I originally achieved a "gentleman's C" in it. What's that say in English?

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

Sorry Mac, yes "who watches the watchers" or "who guards the guardians", or "who polices the police" is a modern translation (and don't say internal affairs because we know how well they work (not) from numerous hollywood movies).

Michele's reply translates as "We all do of course" (Had to use a latin translator for that one!)

Seriously though, I think the emphasis here should be on Cpni and help. CAPi is merely a tool to get us towards a cure, I don't think it should be the be-all and end-all. If someone is confused about what constitutes the CAP we should educate them, not flag them.

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Hunter: Don't think - experiment

Garcia translated that right.   I did not even get a Lady's C or D in latin, but having been brought up speaking a latin based language and being in love with my dictionary (as a child) I've picked up a few things along the way.

I do feel that a flag of some sort might be useful to indicate to other members that this thread is something to look into, it would not have to be a negative thing...  It could be a heads up for scientists, or organisers, or nutritionists, or health 'freaks' amongst us for example.

I know that if I have not been on for a couple of says (it does happen some times) I can't read all the messages and might miss something important.

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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

Michelle, Rifampicin is more difficult to tolerate than doxycycline or Azithromycin that we recommend you start with.   There are some people who went to see Dr Sriram at Vanderbilt who were prescribed it from the very beginning but not all of them were able to continue with it.  We also recommend that you take your time when adding the next antibiotic, and that you don't start the metronidazolei pulses until you feel comfortable with the other antibioticsi.   Some people have also taken some time to get to the full dosage on the pulse, for example you might start with a one day pulse.

But when all is said and done, this treatment can be unpleasant because the Cpni dumps toxins into the body as it dies.   Which is why you need to take your time...

The thing about this site is that there are very few rules, but we try to be positive and convey a hopeful image.   Many people post here when they are really feeling bad, and the people who are getting better don't usually post too many questions or observations, so it is  easy for people to get a negative impression from this site, and us oldies take it upon ourselves to try and balance the situation.   We don't want to make small of the whole treatment it is not without its difficulties, but for many there are no alternatives.   My daughter for instance is doomed to a worsening physical and mental condition without this treatment.   So I am eager to make sure that there is lots of encouragement here, and try to minimize the negative impression that people get from the often painful cries for help.

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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

Michelle and Michele: Michelle's experience highlights what I see as a need to provide guidance and feedback on the information here.

I am sorry that you were treated that way, Michelle. You probably wiped out a lot of CPni, but it sounds like it about wiped you out, too. The information you took to your doctor was all right. But, as Barbara noted, patients modify the protocol, and certainly doctors do, too. Then add all the possible mis-communication between a doctor (who does lots of things beside treating CPn) and a brain-fogged patient, and it is no surprise this complicated protocol gets modified.

Michele, I have to say "Thank You" again for your involvement here. I do really try to be positive and convey a hopeful image. I look at Sarah's experience and I think about how mild the side effects of treatment may be, but then I look at some others' experiences and I know we have to be ready to counsel people whose side effects are more distressing.

OK, garcia, you have a point. If someone does find a way to get rid of CPn quickly without half-killing the patient, of course we want to know. Hey, I'll be the first to post it here if I can! OTOH, I don't see that happening in the near term, and I have read a lot of stories here from people who suffered unduly with little benefit because the proven protocol was modified.

Just theoretically, since I don't know Drupal, how about these two ideas

1. anyone could flag a post with any descriptor. Anyone whose post gets flagged gets that flag on their personal page, like:
   • garcia -- helpful (10), experienced (7)
   • paron -- dry(7), wordy(8), helpful (7), baloney (2)
2. I really believe we should shut off the discussions on the Handbook, CPn simple, and other pages that are supposed to be canonical. If anyone wants to discuss them, they can post in the forum with a link to the page. The discussions there just confuse things.

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

I also think we are doing pretty well!!

I think this forum is great and that anyone can post and we all try to help and answer the best way we can. And the ongoing discussion helps a lot.

It is all the answers together that is helpfull!

It would not be the same with flags and so on.

Then I think many will feel stupid to post.

I think everyone here make cpnhelp so great.

Best Wishes to all,Maria

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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat