Good to hear from you jeannie!  All HAIL the Trooll Princess

I think there has been a little confusion.  I have been noticing many of the newbies have been jumping in, way toooo fast, no supplementsi [4], no toxin helpers & then BAMMM!  They are wondering why they are sobbing, suicidal, &paranoid etc, hurting units!

I am glad the word is getting out for sure.  I just wish newbies would have all their ducks in a row before they plow into the protocol without regard for their bodies & the seriousness of the CPni [3].

I looked back at my timeline, here one year in April.  I had the abxi [2] in June & did my first one day, one 250 mg flagyli [12] pulse in August 07.  Ramping up slowly is what has been going on in this house!

Newbies, the CPn is ruthless, make no mistake about it.  Before it dies & leaves your temple, it kicks up some serious whoop ash in the form of toxins & causes porphria on its way out the door.  Respect your body & go at a pace that won't land you in the hospital wait room.

Also, expect the unexpected.  There is no clear line to follow from person to person.  We are all one of a kind, praise God, each of us different & this makes any treatment "interesting" to say the least.

That is my little rant!  I ran out of NACi [13] for 2 weeks & thought, no biggy, just get back into the full dose, then my allergies started kicking up & I was pulsing at the same time!  I am very tired to say the least.

peace

 

CFIDSi [7]/ME 26yrs, FMSi [14], IBSi [15], EBVi [6], CMV, Cpn, 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#9 750mg 5.5 day, 4-25-8

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CFIDSi [7]/ME 32 yrs, FMSi [14], IBSi [15], EBVi [6], CMV, Cpni [3], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [4] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [12]/day-3 days

Well said Jeannie and Ruthie, I too have been concerned with the "tweaking" that seems to be going on with this protocol and the lack of understanding of the basics with it. A lot of very hard work has gone into the development of this treatment by Stratton et al to get to what we have now and for many of us with MS it is a lifeline. For those of us with the "progressive" label there is nothing else so it is vital that the waters should not be muddied. By tinkering with what has already been established in the patent then having unsuccessful outcomes we run the risk of discrediting the whole experiment.

I realise that by being aware of and discussing the current refinements being considered by Stratton is an exiting pastime for old hands, but new people should not be distracted from going straight to the Getting Started section and absorbing all the information there in order to learn and get their doctors on board.

For my own part after experimenting with Ca Pyruvate for one day of this pulse, I know that I cannot handle any further ramping up of the established Wheldon version of the CAPi [16] yet. Neither do I want to give my doctor any reason to suspect that I am acting in an irresponsible manner - or that the CAP is only snake oil.

New Forest, UK. Progressive MSi dx 12/06 LDNi [17] 3/07 CAP 6/07: Wheldon version. Pulses so far #10

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Progressive MSi [18] dx2006. LDNi [17] & CAPi [16]: Wheldon version. All supps. Doxyi [8] 200mg. Zithi [19] 250mg. Metroi [12] 400mg.Pulses #17...I can because I think I can.

Speedbird, 

"By tinkering with what has already been established in the patent then having unsuccessful outcomes we run the risk of discrediting the whole experiment.

yes.. my concern as well.... especially when the treating doctor's are presented with this information and THEY don't take the time to truly understand the bacteria, the protocol and all the implications; or, their unwillingness to prescribe what is proven (i.e., wanting to treat "their" way).

I would hate to see The Protocol "badmouthed" in the medical arena (more than it probably already is... due to lack of knowledge of the bacteria)  Nothing we can really control... but a concern because of their unwillingness to understand. 

Would it be safe to say  if a doctor isn't willing to treat you with the proven combination ABXi [2]...... find another -- it's not going to work?!

(sorry, getting a bit adament, LOL)

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi [6].  CFIDSi [7]/FM diagnosed: 6/07; Protocol:  200 mg/doxyi [8] daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi [4]

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JeanneRoz~CPNi [3] diagnosed & started protocol 4/2007, also HHV6, EBVi [6]. CFIDSi [7]/FM diagnosed: 6/07; 100mg/doxyi [8]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [9] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Thanks  for your post.  I appreciate your message.

So, far, one or another of us has been pretty religious about getting notes into every post about pyruvate and the 'new, experimental' protocol, to make certain newbies don't decide that's the place to start. I've said, 'newbies, don't try this at home' more times than I'd like to count. Joyce, Michele, Sarah, Daisy and Jim have done so several times. In a couple of weeks' time, it's become a big concern.

I've begun to think Michele's "Getting Started" or "Start Here" tab (whatever it ends up being called) at the top of the page should be mandatory reading for anyone signing on to the site. It could be like one of those 'do you agree to our site regulations' tabs they have for contests and some other forums. One would hope (there's that optimistic word again) that people just coming here would read "Getting Started" when they were first getting started.

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

There are all kinds of considerations to be mindful of here. Some people might argue that there is not enough evidence to say that any protocol is proven, (no double blind/long term studies)  and the situtation is probably different in vivo to what it is in vitro.   However, when starting treatment especially with doctors unfamiliar with Cpni [3], the simpler, the less obscure, the easier to administer the protocol is the better.

Drs Stratton, Sriram and Wheldon themselves are constantly reviewing and making changes to the medication and supplementsi [4] we take, but as mentioned in the Getting Started module, on this site we recommend you start with the Wheldon ABXi [2] protocol that has remained constant for the longest time and has enabled people to make enough progress and to understand their reactions to the CAPi [16].   Once they have reached that point of stability and understanding then maybe it might be time to think of how to make faster progress by switching to one or the other of the more potent antibiotics, or to increase the dosage or to vary the number of days a patient would take a certain drug.

The other benefit of using the Wheldon protocol is that reactions to it are well documented on this site and we the 'oldies' are better able to spot problems for people and offer helpful suggestions.   We also know that what are often described as ALLERGIES by people just starting on the standard protocol ABXi [21] are not allergies at all but a Cpn die-off reaction.   Once people start taking other antibiotics which we are not familiar with then it is more difficult for us to speak from experience about possible reactions. 

Michèle (UK) GFAi [22]: Wheldon CAP 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [12] pulse. Zoo keeper for Ella, RRMSi [23], At worse EDSSi [24] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [22]: Wheldon CAPi [16] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [12] pulse. Zoo keeper for Ella, RRMSi [23], At worse EDSSi [24] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

I am not entirely convinced that some new people are rushing in to do 'their own thing' (which is the wrong thing) because some old hands are tweaking their protocol.  It occurs to me that they are not reading the important stuff on the site which explains things i.e. the CPNi [3] handbook, Getting Started. 

M.E./CFSi [25] 20 years, intermittent.  Wheldon Protocol - Started NACi [13] and supplementsi [4] Sept 2007. Doxyi [8] and Roxy full dose by Dec '07.  First Flagyli [12] pulse January 2008.

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M.E./CFSi [25] 20 years, intermittent.  Wheldon Protocol - Started NACi [13] and supplementsi [4] Sept 2007. Doxyi [8] and Roxy full dose by Dec '07.  First Flagyli [12] pulse January 2008.

Yes but this leads us back to the confusing site issue. People are starting from different places. I've said before, the links across the top are not always the first place people look. I went for the links in the sidebar under Recent posts. Those are not categorised, people see the post title but miss the breadcrumb trail of which category the thread is in, often it's not even a forum post but in somebody's blog.

A standard forum takes you to the forum main page with all the categories, you then make a choice as to which category you want to read in.

I like the idea of forcing new people to read the getting started information as part of sign up but it also needs to be very prominent on the site as I suspect there are many lurkers, trying this before signing up. I've noticed a number of new people coming on who are already taking part of the Protocol.

I also like the idea of posting Jean's original message up top as part of getting started as a warning to people to follow the whole thing, not just do bits.

Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supplementsi [4]. Doxyi [8] 200mg. Zithi [19] 250mg M/W/F.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supps. Doxyi [8] 200mg. Zithi [19] 250mg. Metroi [12] 400mg.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008. First pulse June 2008

I agree, were all 'NEW'.

Have we all forgotten we once had no chance, witgh it being replaced with some kind of hope. None or at least most of us would not begin something like this without a minimum degree of groundwork, but also time is not on our side and the clock is ticking.

I weighed up as much as I could of pertinent points, what I could afford (not much) as I am on my own on this (saw my GP again this morning, & he still can't go with me on this). I started the CAPi [16] with David's help and several years of quantifying hundreds of different reasons for similar approaches.

I still have much of all the other options still in my mind, as I suspect many other 'NEWbies' also may have.

Anyway back to the main issue. The question is to CAP or not to CAP.

I have decided that evidence gleaned over several years is too strong to ignore, and that I must do so (Even in part, and disjointedly to begin).

This is a long road, which it seems is slightly forgiving for minor or even major deviations, as long as they don't disrupt the main course, as we know it. Almost every 'CAPper' will probably do so with their 'flavour', and unless we are all experts on CPni [3] (and we are all becoming so) we can only have a growing knowledge of what we are dealing with and add to it.

LONG LIVE ALL CAPPERS, AND OF COURSE D.WHELDON et al;!

I can see a slight but definite improvement after only 5 weeks of CAP. 

Started 16/04/08. Doxyi [8].100mgx2 Daily, Azith.250mg M/W/F, No Pulse yet. Also

 NAC 2g, Selenium 200mcg Daily/ Folic 400mcg, Vit.E 400iU, Q10 30mg, Eve.Prim. 300mgx2, Vit.C 1g twice daily, Pro.Bio, HBOT Oxygen Therapy weekly (The Oxygen therapy may be important).

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SPMSi [28]-2003 & told that's it. Much research - I Don't Believe Them.

I researched my own beliefs of probable causes and all the viable (of hundreds) suggested an infectious cause? There were quite a few but the strongest, backed up by other res

Teteris, I'm glad you're seeing improvement only five weeks into the protocol!! That's great!! I don't think any of us here have forgotten we once had 'no hope', but what the veterans here are saying is (and it is valid; I read every post on the site) there's a standard protocol and many new posters are jumping 'to the head of the line' so to speak, and, in hopes of hurrying the process, may do themselves (and the tenuous public relations for this protocol) damage. The question is not whether 'to CAPi [16] or not to CAP'. That was not the purpose of this post. The question was, in an attempt to be as responsible as we can to the newcomers who may not do adequate homework on the subject, how do we make it clear that the EXPERIMENTAL protocol is not THE ACTUAL protocol. I have already asked in one thread if people could please use exactly those terms, so as not to confuse new people who think they can just start out using meds we aren't familiar with and at doses that might be intolerable at the beginning of treatment. Yes, of course, everyone is going to tweak their treatment ultimately. Either a doctor will add to it, or the patient will note personal reactions which require adjustment, or other maladies will require medications unrelated to cpni [3]. VETERANS here tend to get all aquiver when they hear of something 'new', but they have already been there and done that. They know their body's reaction to protocol after a year or two. They know the pace they can maintain, both medically and physically, as they proceed on treatment. It's a very real fear for the veterans that this protocol will be attacked as it becomes more widely known, since bad press is like a virus, especially in the internet age. It's not just important to us that each person who tries CAP gets better, but it's important that people who say they did a CAP and it failed actually did a CAP, did it properly, gave it a long enough period of time to be effective and didn't TINKER with it then announce it hogwash. We're a self-regulating site, for the most part, so these issues do come up for discussion out of a keen sense of responsibility to those who come behind us.

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

Spot on there MacK

Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supplementsi [4]. Doxyi [8] 200mg. Zithi [19] 250mg M/W/F.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supps. Doxyi [8] 200mg. Zithi [19] 250mg. Metroi [12] 400mg.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008. First pulse June 2008

Teteris, Ahhh sugar, he still wouldn't run with it? Typical.

Pointless either of us going back to the Neuroi [26] given we both have the same one and he's ignored both of us. If I can find out who the Neuro of our 3rd local member is, we might be able to mount an assault on his office between us.

Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supplementsi [4]. Doxyi [8] 200mg. Zithi [19] 250mg M/W/F.
No GP/Neuro support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supps. Doxyi [8] 200mg. Zithi [19] 250mg. Metroi [12] 400mg.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008. First pulse June 2008

My neuroi [26] doesn't know (to my knowledge anyway) because I thought that he was a waste of space and money from the start. My GP however, is a star and I will protect him as much as possible. 

New Forest, UK. Progressive MSi dx 12/06 LDNi [17] 3/07 CAPi [16] 6/07: Wheldon version. Pulses so far #10

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Progressive MSi [18] dx2006. LDNi [17] & CAPi [16]: Wheldon version. All supps. Doxyi [8] 200mg. Zithi [19] 250mg. Metroi [12] 400mg.Pulses #17...I can because I think I can.

I'm going to pay mine a visit as soon as I start Pulses. Anyone got a spare baseball bat?

Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supplementsi [4]. Doxyi [8] 200mg. Zithi [19] 250mg M/W/F.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [23] Feb 4th 2008.

NACi [13] 2400mg. All supps. Doxyi [8] 200mg. Zithi [19] 250mg. Metroi [12] 400mg.
No GP/Neuroi [26] support. Self medicating with help from David Wheldoni [27].
Started CAPi [16] 20th April 2008. First pulse June 2008

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Yeah...but what is THE protocol? At its simplest, THE protocol is one or more meds to kill each of three Cpni [3] forms, added in the most expedient way that balances kill rate with patient tolerance. Pyruvate is not part of the protocol in any more than an adjunctive role, no more than porphyriai [31] management is really part of THE protocol, but certainly takes up a significant amount of bandwidth here.

Folks like checklists. Put another way: they don't want to know why, just what. That is at the core of the issue here. As more and more discussion regarding adjunctives happens...often critical components to the cure...it becomes more and more difficult for the drive-bys to get their head around it. The challenge becomes communicating the basic truth of Three Forms and the Three Meds to Rule Them All.

Tennessee, USA - Bb positive w/neuroi [26] involvement, suspected CPn
Doxyi [8]/Samento for Bb 2005-2007
Started CAPi [16] 4/19/08 - NACi [13] 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi [12] pulses @ 2x500mg

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Tennessee, USA - Bb positive w/neuroi [26] involvement, suspected CPni [3]
Doxyi [8]/Samento for Bb 2005-2007
Started CAPi [16] 4/19/08 - NACi [13] 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi [12] pulses @ 3x500mg

BobO, But just what you've remarked on can be found in the new Getting Started or Start Here (whatever it's ultimately called) tab at the top of the page. That's why new folks should HAVE to read it before entering the site. A nice clean little 'checklist'. A nice, short little explanation of the disease and its three life phases. A few comments on management of reactions. Once eveyone wraps their head around that very basic stuff, then they can tentatively wade into the rest of the pool of information. UNTIL they read it, however, they don't know (from reading the forums) what is tweaking and tinkering and what is the true basis of the protocol.

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

Oh I'm not saying it isn't here, or isn't properly presented...I personally had no problem arriving at a reasonably comprehensive understanding very quickly. I'm pointing out that when people wade in without a good understanding of what is, and is not, THE protocol....vs what is adjunctive to THE protocol....they end up thinking that every little bit of tweaking we talk about here represents a different or modified protocol. In that the challenge is sorting the critical from the merely interesting, and clearly some folks have a bit of a time with that.

A classic case of that is the addition of pyruvate. Is that a new protocol? Nah. It really is just another supplement that has the potential to improve the results, much like Vit D. Given that NACi [13] has been found to play a crucial role in the direct killing of EBs, I would consider it to be part of THE protocol, if used for that purpose....but....I think Stratton has historically used abxi [2] for EBs...in which case NAC would be considered adjunctive.

I truly am not trying to quibble over semantics, but I think we do live or die (maybe literally) by our definitions. When people walk in cold without a good understanding of what does and does not matter as driven by the most fundamental definition of THE protocol, they get rapidly distracted by the adjunctive noise. To best combat that tendency, it becomes necessary to repeatedly state....PLEASE READ THE GETTING STARTED!!!! When you have a good understanding of the three forms of Cpni [3] and why it takes multiple meds to kill them all, it becomes pretty clear what constitutes THE protocol vs adjunctives.

Tennessee, USA - Bb positive w/neuroi [26] involvement, suspected CPn
Doxyi [8]/Samento for Bb 2005-2007
Started CAPi [16] 4/19/08 - NAC 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F

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Tennessee, USA - Bb positive w/neuroi [26] involvement, suspected CPni [3]
Doxyi [8]/Samento for Bb 2005-2007
Started CAPi [16] 4/19/08 - NACi [13] 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi [12] pulses @ 3x500mg

Can you explain what "HBOT Oxygen Therapy" is?  And how it is obtained and used.  I have always thought that oxygen could be an excellent part of the treatment of Cpni [3].  Thanks.

 

63 year old woman feels like 80!  CFSi [25] since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped.  Started 100mg Doxyi [8] 2X/day 1/11/08.  Also t

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63 year old woman feels like 80!  CFSi [25] since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

 I think I just answered my own question as to what HBOT Oxygen Therapy is -- it's a Hyperbaric Oxygen Tent -- maybe?   But how do you obtain it -- order it from some catalogue.  How do you know how much to use and for how long?   Sorry for all the questions.  Thanks again.

 

63 year old woman feels like 80!  CFSi [25] since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped.  Started 100mg Doxyi [8] 2X/day 1/11/08.  Also t

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63 year old woman feels like 80!  CFSi [25] since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

HBOT means HyperBaric Oxygen  Therapy and is also referred to as HDOT or High Dosage Oxygen Treatment. There are more than 60 facilities available in the United Kingdom. Availability and cost vary around the world but in the UK is reasonabley acceptable. Patients are treated within purpose built chambers, (they are usually quite large and heavy). It's effects can best be visualised by imagining a fizzy bottle of lemonade, when it is first opened, the pressure in the bottle is released, accompanied by a 'HISS', and then bubbles appearing in the lemonade in the bottle. This is the Carbon Dioxide gas which has 'come out of solution' due to the 'pressure drop'.

HBOT is the reverse of this process. Patients are within a specially built chamber which is large enough for either one person (Monospace) or for several people to sit comfortably inside (multispace). Instead of carbon dioxide as with the lemonade, the patients breath pure oxygen and as the pressure is increased, so more oxygen than usual is absorbed into the blood stream, the process is in fact far more complex than this and also affects the size of blood cappillaries delivering MUCH larger amounts of oxygen throughout the body with many different benefits which should be investigated by extensive research, BUT the benefit I found within a few weeks was MUCH improved bladder control (NEAT). Also IF and infection is involved, any bacteria HATES Oxygen which there is now much more of.

The MSi [18] society mentions HBOT but it's use is controversial. I personally found a great deal of benefit (enough to warrant sitting in a box for an hour once a week). Failing anything else, the Berkshire MS Therapy Centre 01189016000 operates a HBOT facility. There are strict guidlines for this therapy, and it must be operated and supervised by trained personnel.

I wish I could go on a bit more but it's a subject to be researched fully.

Happy Hunting!

Started 16/04/08. Doxyi [8].100mgx2 Daily, Azith.250mg M/W/F, No Pulse yet. Also

 NAC 2g, Selenium 200mcg Daily/ Folic 400mcg, Vit.E 400iU, Q10 30mg, Eve.Prim. 300mgx2, Vit.C 1g twice daily, Pro.Bio, HBOT Oxygen Therapy weekly.

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SPMSi [28]-2003 & told that's it. Much research - I Don't Believe Them.

I researched my own beliefs of probable causes and all the viable (of hundreds) suggested an infectious cause? There were quite a few but the strongest, backed up by other res

zero negative sjogren's diagnosed 2/03, 200mg doryx daily, mwf zithromax, flagyli [12] every 3 weeks.

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zero negative sjogren's diagnosed 2/03, 200mg minocin daily, biaxin,plaquinel mwf, flagyli [12] every 3 weeks.

Let's not forget naci [13] is not tested clinically in a lab either. Yet it is recommended over penicillin. Is recommending calcium pyruvate any different? zero negative sjogren's diagnosed 2/03, 200mg doryx daily, mwf zithromax, flagyli [12] every 3 weeks.

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zero negative sjogren's diagnosed 2/03, 200mg minocin daily, biaxin,plaquinel mwf, flagyli [12] every 3 weeks.

Thanks so much Teteris for all the details about HBOT.  I was curious about pure oxygen therapy as I am always short of breath (due, I believe, to the cpni [3]) and also as I know pure oxygen can destroy bacteria.  I will certainly explore this further.  I have CFSi [25] along with the Cpn.  I live in the US, so will look into what we have here, coverage, etc.

I appreciate your giving such a full explanation.  Thanks again.

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped.  Started 100mg Doxyi [8] 2X/day 1/11/08.  Also t

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63 year old woman feels like 80!  CFSi [25] since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

I hope when the website is upgraded that the forum won't be perhaps the first thing new people go to. I too am concerned that new people and visitors do not understand that the combination of antibioticsi [2] is required, or what that combination is. I lump pyruvate and HBOT in with the supplement list that isn't the CAPi [16]. But this seems to be confusing to new people. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [12] for muscle pain, insomnia, interstitial cystitisi [32], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [12] for muscle pain, insomnia, interstitial cystitisi [32], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

According to my neurologist, hyperbaric oxygen was once 'the next big thing' for MSi [18], with researchers looking into it as a possible treatment; but it didn't pan out, except that it does seem to be helpful when started in the middle of a relapse.

It's not true, by the way, that all bacteria hate oxygen. Some require it, and like it; the tuberculosis bacterium is an example. Before antibioticsi [2], one treatment for TB was to collapse the infected lung, starving the bacteria of oxygen. Hyperbaric oxygen generally does help with infectionsi [5], but it's not an absolute rule.

deleted

M.E./CFSi [25] 20 years, intermittent.  Wheldon Protocol - Started NACi [13] and supplementsi [4] Sept 2007. Doxyi [8] and Roxy full dose by Dec '07.  First Flagyli [12] pulse January 2008.

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M.E./CFSi [25] 20 years, intermittent.  Wheldon Protocol - Started NACi [13] and supplementsi [4] Sept 2007. Doxyi [8] and Roxy full dose by Dec '07.  First Flagyli [12] pulse January 2008.

Lee, I don't have time at the moment to determine whether NACi [13] is or isn't 'tested in a lab', so can't answer to that. I do know that it's on David Wheldoni [27]'s protocol and was on it when I began CAPi [16] in October of 2005. Calcium pyruvate has been pronounced 'experimental' and is being recommended to SOME patients by their cpni [3] doctors. While you can consider it an adjunct you personally choose to add, it's not on the standard protocol and that's precisely how newbies get confused as to what is and what is not the basic protocol. That was precisely the point of this post. If we aren't clear, newbies haven't got a clue what's standard and what's tinkering.

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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Getting fed up with the wrong headedness of these discussions.

For accuracy, NACi [13] has never been "tested in the lab" against Cpni [3] elementary bodies. It's mentioned in the patent along with a group of similar cysteine-reducers, of which amoxicillan was the "preferred" one and among those tested in the lab. NAC was independantly used clinically against EBi [43]'s in preference to amoxi, for the reasons Sarah mentions, by both Drs Wheldon and Powell. Dr. Stratton put his official blessing on it's use instead of amoxi.

I have to say that I'm at the point of fed up with the anxiety about "experimental" vs "standard" CAPi [16]. There is no "standard" CAP! There are versions of CAP's for Cpn. It is not accurate to say that Dr. Wheldon's CAP version is "standard" it is simply the most commonly used. The only CAP that has been "lab tested" was that in the original Mitchell/Stratton patent, and in it they used various combination of continuous antibioticsi [2] rather than pulsed, including mixes that used rifampin and INHi [44]. If you want to give newbies the "proven" protocol, that's the one, in truth.

I understand the concern that newbies not be confused about what's what, but the protocol updated by Dr. Stratton as his "standard" current protocol, including the use of pyruvate and low dose prednisone, should not, repeat, should not be called "experimental" unless we also call Dr. Wheldon's and Dr. Powell's protocolsi [1] "experimental." It is inaccurate language, and I believe fundamentally deceptive even if well intended.

We have been careful here at Cpnhelp from day-one to be as scientifically honest and forthcoming about the experimental nature of any CAP treatment for Cpn listed on these pages. Marie Rhodes and I, who have a modicum of scientific training between us, both were very concerned that this be represented accurately.

I personally hate the use of the word "proven" in the title of this thread. It is scientifically inaccurate and, I believe, misleading. The various CAP's are scientifically investigated and based on sound research, but not proven in gold standard double blind studies, which is the accepted scientific medical standard currently for "proof."

I also believe it is a mistake to relegate Dr. Stratton's current protocol revision in some "experimental" corner. It has as much scientific legitimacy if not more than any other CAP version represented here. We can't control newbie confusion by artificially rigidifying our stance. This is no different to me than the doctors who won't prescribe a CAP for us because it is not standard treatment! Now we have an artificial "standard treatment" here at Cpnhelp? NO, NO, NO! Not on my watch.

CAP for Cpn 11/04. Dx: 25yrs CFSi [25] & FMSi [14]. Protocol: 200mg Doxyi [8], 300mg Roxithromycin, Tinii [9] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [16] for Cpni [3] 11/04. Dx: 25yrs CFSi [25] & FMSi [14]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [9] 1000mg/day pulses; Vit D2000 units, T4 & T3