Cpnhelp.org

Ron  You're right, of course.  It's easy to forget the intended purposes of the two categories of threads, and the more comfortable and familiar we become with each other, the easier it is to forget.  I'm reminding myself right now that Cpnhelp.org is not just for support, but serves as a valuable reference source for medical treatment.  Also, every user on the site is a pioneer, and each treatment experience story holds value for those to follow.  Some overlapping of non-related discussion with threads concerning treatment information and experience is probably unavoidable, but with gentle reminders amongst ourselves (like yours), our collective interest in the advancement of this site should help us to police ourselves sufficiently.  Gentle reminders are welcomed by this site user.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Mpn, EBV, CMV, elevated heavy metals; strong indications of Cpn, gluten+casein sensitive / Wheldon CAP since Aug. '06 - 200mg doxycyline/day + 250mg azithromycin every other day; antivirals; chelation; LDN.

Ron, What you say seems very wise. Off-topic posts are often amongst the most interesting, though. One of the qualities I like about this site is the quirky humour; sometimes it is very pleasant to re-read over it. I wouldn't want to lose the link to Clifton Bridge which you put up, say, or the thought of Altesa wearing a green Victorian dress. And this particular thread, for some reason, seems to have touched on a number of salient points such as phase-changes in chronic illnesses. 'Spooliness' is a problem, though. One remedy might be, if anyone wishes to add more material on the forum topic, to start another thread with the same or similar title and to suffix it (2) or (3) etc. So: "Borrelia: a possible co-pathogen? (2)"  Incidentally, I have found the 'search' facility as useful as the index. I did a search for 'niacin' the other day, and found references to it on many threads. (Sarah's just trying niacin for the first time. She looks like a character in Poe's 'Masque of the Red Death' just at the moment.) 

D W - Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding pulsed metronidazole. Improved; normotensive

I agree that it would be great if there were some easy way of telling if a post should stay  for the sake of others who might come along and gain some insight from it or if it is expendable.  To ask some of us who are afflicted with a severe case of cPn to "rate" what they just posted might be more of a decison that they might be able to handle if the brain fog is severe.  Brain fog works both ways...posters and readers may both have it...posters and readers may both benefit from things being edited out or left.  Maybe one of three boxes to check saying - (1) sure, feel free to delete this, OR  (2) no - there is valuable info in here, OR - I will leave it to you to decide - and then there would be a time frame, as was suggested to make the decison as to what is or isn't permanent for posterity. 

I have no idea what is or isn't feasible where computer or site related possibilites are concerned...so I have no real ideas, here, other than,  Ron - you are making a very good point and I hope someone can take it and run with it!

Diana

As far as I see it is that there are certain places, especially the handbook, where you can find the most relevant information easily and quickly.  You can also put in a search term to see what comes up.  Lots of information about whatever subject does, but along the way you discover all these different personalities, so you can get to know everyone without even posting yourself.  There are some sights too dull for words, others too full of {{{{HUGS}}}} and not much in the way of information, but this place is carving out a rather unique personality of its own.........Sarah

An Itinerary in Light and Shadow

Started the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.

All: In A Pattern Language, Alexander et al. make a great point about the gradations from "public" to "family" to "private" in successful architecture.  Perhaps this site mirrors that structure:

• the Handbook is the porch: made for visitors' use.
• the Forums are the dining room: visitors are expected, but a certain familiarity with "house rules" is expected of them.
• the Blogs are the kitchen: visitors are welcome, but it's a work area -- expect a certain amount of clutter, references to long-running family jokes that you aren't "familiar" with, a jargon that you need explained, works-in-progress sitting around, etc.

So, perhaps the structure we already have addresses the needs of our visitors. If someone is in a desperate, brain-fogged hurry, there's the handbook.

Speaking of search: I went back to reread one of David's poems, In the public bar of the Mariner's Arms,
Bridgwater: storm outside in http://www.cpnhelp.org/?q=medicine_is_ruled_by_fash

I ended up rereading all the posts there. I'd hate to lose any of it, even if the author isn't sure of the contribution's enduring value.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Hello to all- I've not been contributing as much lately due to low energy and Astrodiana's noted and brain fog dilemma, but have been following discussions as much as I can. By the way, it's notable too that there is so much going on here that I can't keep up as easily as I once was able, and it's not the current fatigue and brain fog.

I like Ron's architecture analogy. It does define something of the differences in these things, although note that the Handbook also consists of some forum threads on more specific topics--0 e.g. Basil's comments on porphyria were keyed into the Handbook as they are a much better explanation by a resident patient-expert than what we had there before.

Overall, despite the spooliness of threads such as the Borrelia thread, like David I find the quirky humor and the engaging relational mode of communication part of the charm of this community and our discussions. God, this disease and these topics can be so deadly and deadly serious. To have a little leavening of discussion with personal free-association and humor is a blessing for me. We do tend to self-correct at some point, such as David asking to have his thread closed.

It is easier to follow these diverging threads if one has been tracking a thread over time. I can imagine some frustration for a newcomer or researcher looking for succinct information. It's not really possible to have a "delete after a time" option to check. It is possible to "prune" comments, but that takes editorial time-- and I certainly don't have it! What might be an alternative solution is to have members scan for important discussion that have accumulated and shown the test of time, then cull the more useful parts of the post and enter them into the Handbook. I also suspect that David will digest the results of his discussion thread and end up editing in a succinct commentary on the subject on his site as a result. We can point to the mess here as the dining table after a Thanksgiving meal, and David's pithy post on his site as the beautifully served nouveau cuisine plate, ready for tasting!

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, 300mg Rifampin, Tinidazole pulses. Northern Ohio, USA

I like the ambience here too,  as well as the treasure trove of medical information. I also like knowing that on days (all too many) when I'm feeling too tired or too brain fogged or just too damn cranky to put my thoughts down clearly if I wait a little while someone else will come along and do it for me.   On this occasion..............thank you Sarah ........and DW and Diana and Joyce and Jim (not that I could have put it half so well!)

Elinor from England, UK..... on Wheldon protocol for ME/lyme borreliosis , positive for borrelia and Cpn.  Started  Aug 05, stopped Jan06, started again Sept 06.

Oh yes.......... and thank you Ron as well.

Elinor from England, UK..... on Wheldon protocol for ME/lyme borreliosis , positive for borrelia and Cpn.  Started  Aug 05, stopped Jan06, started again Sept 06.

Like Jim I said to self as reading this thread "well crumb, I do not have time to edit forums too..." It occurs to me that Jim's mention of a succinct final note by the poster of the original thread at some point to both close it and sum it up might be a good idea as a suggestion for everyone? We could tell newbies that if they want to read the whole thread go ahead but that they can also read the subject matter opening it and the closing note as a more on topic option. think so? We could spool away without fear....and this habit would close some of those ancient threads that get reopened sometimes due to a newbie posting something new on an old, old topic and as some of htose threads are fairly long it takes time to load them and a person often reads all of to to catch up. It might be better if new, fresh posts were opened we could keep up with.
marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplements.
"Color out side the lines!"

 Hi all (as in DW, Jim, Sarah, Marie, Joyce, and on a clear day - Elinor)  - This is an edit a few hours later - I simply cannot beieve that I FORGOT to credit our own talented creative and charming Ron - thank you, Ron!

I am here to 'fess up.  Being one of the worst offenders, I hereby take an oath that I will try to respect others' poetic, gentle, and wise thoughts.  If I am not successful, may I be banned to the upper balconies to sit on my hands.  But first I have to say that we both had a wonderful laugh over Elinor's very funny remarks. 

Rica    EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 34 pulses MS

This website has everything: on Ron's architectural paradigm it has a porch, reception rooms and a cosy parlour at the back where the regulars (and anyone else) can converse: after all that's what you do in a parlour. And now it has a balcony. No - I stand corrected: plural - balconies. But no, Rica, you mustn't retire to one - we need you on the ground floor.

I like Ron's architectural paradigm; it fits very well.

D W - Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding pulsed metronidazole. Improved; normotensive

I like the option of adding a summary to a closed or tired thread. We could put it under a line of ">>>>" or something in the original post. Nothing compulsory, but if the originator thinks it will add in some way, then that's available without altering our programming at all.

I recently attended a class on another new programming language. It was especially valuable because it was the first time the instructors had taught it. They programmed in the language, right in front of us, including getting "stuck" and unstuck. I wouldn't have learned so much about programming "as practiced" if they'd been too smooth to get stuck.

So, our old posts would remain if anyone wants to see how we get from an original post to a . . . well, to an end point, if not to a definitive conclusion. 

I'd like to thank everyone for their thoughtful contributions to this thread, and for their kind words, too. (That's not a sign-off, but I felt the need to acknowledge the quality of the discussion to this point.)

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Jim,  I hope you don't mind my little "Experimental Back Porch Thread."  It might work or it might bomb.  I figured a little experimentation couldn't hurt.  Joyce

Experiment on! I am continually fascinated by how this on-going social experiment evolves-- our  culture, our community, and now an architecture! We are self correcting, which means we must have excesses to find the boundaries from time to time, so I have no worries about experimenting.

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, 300mg Rifampin, Tinidazole pulses. Northern Ohio, USA

Doldrums are as bad in their way as high seas. May I return to this thread?

Thanks, Ron, for remembering 'The Mariners' Arms, Bridgwater: storm outside.' We lived in Bridgwater for a few years from 1963. It was an inland port, at one time of considerable importance, but much decayed by the 60's. I loved it. The docks were still active with timber and coal traffic; there were grain silos and a provender mill which made cattle-cake night and day, sawmills, railyards, maltings and a brewery. Even the street-names were memorable, like Penel Orlieu. As you walked down Penel Orlieu towards the docks you entered North Gate and there stood the Mariners' Arms, a plain early Victorian building, very much a working man's pub, a floor of bare boards. As I recall it was tall, with a number of upper windows, so it probably took lodgers associated with work on the cargo ships. It was demolished about 40 years ago. I thought of it immediately I read James Joyce's Ulysses:

"We come up this morning eleven o'clock. The threemaster Rosevean from Bridgwater with bricks. I shipped to get over. Paid off this afternoon. There's my discharge. See? W. B. Murphy, A.B.S."

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Improved; normotensive.]

David, I don't know if you've heard Don Henry's song "Into a Mall," ( http://www.donhenry.com/IMAGES/Lyrics/Into%20a%20Mall.pdf ), but you might like it. I can't reproduce the music of it, but the chorus has a deliberate dumbness that's just perfect for the lyrics.

When Dianna and I spent some time touring around Europe a few years ago, we went to places that had very few American tourists -- very few tourists of any sort, actually. One was Koblenz, Germany. I chose it because it seemed to be very much like Akron, Ohio. It's a middle-size, industrial town, with a story to tell that's not been heard all that often and that has neither been smoothed off nor sterilized.

In England, I would have chosen Doncaster, perhaps, for similar reasons, but there just wasn't time. Besides, we can get Pontefract cakes here, now.

The point is, I'd rather wrestle down the toughest old steak than eat the finest baby food. I think I'd have liked Bridgwater.

Ron 

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

Thanks for the link, Ron; the lyrics are good and not without humour. I've never been back to Bridgwater docks since we left, so I have a pristine memory of what they were like, gaslit, with the drone of the mills and the clank of loose-coupled railway wagons being shunted and the chuntering of the quayside steam-crane. All gone, now, but I gather it's all pleasure-boats, bijou residences and bad public art. Somehow it's the bad public art which really rubs it in. Babbysnap, indeed.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Improved; normotensive.]