Submitted by Jim K on Tue, 2007-01-09 07:25

To all of you who took the survey in October, my thanks... and apologies. In looking at the data analysis it appears that some questions were misunderstood, leading to possible skewed data... as in "all skewed up!" With a rather small N=53, that leaves little margin for error. Rather than try and smooth out the data I have decided that better science requires a complete redux. Again, my apologies, but the work you all did on the last one helped us refine and expand to this present offering. It still ain't perfect, but getting better!So, I'm going to rely on your fundamental good natures (at least I believe most of you have one when not undergoing a pulse!) and ask you all to do the CAP Treatment Survey over again.

This version is considerably expanded in the symptom questions, and so will take a longer time to complete.

Pay particular attention to the symptom rating scale, making sure you respond for pulses as according to your most recent pulse.

Please take only once, and please do not start it if you don't believe you can complete it in one sitting.

I suspect it will take between 25-40 minutes for most of us, and requires mostly mouse clicking with little typing. I will leave the survey available for a longer period to make sure members see it. Although leaving your email is not required, it would help us to double check any apparent errors, as well as to followup with more specific questions. This is particularly important for those with an MS diagnosis, as Marie has some future questionnaires she would like to correlate with the reporting from this one.Please use the link below to start the survey when you are ready.

Link for the CAP Treatment Survey Redux

 PS-Thanks to Norman Yarvin whose programing expertise helped make many things easier for me on this survey, and whose cogent editing and science-mindedness helped make it a better survey.

Hi Jim,I've done it... I'd like to make a couple of suggestions...Would it be possible for us to know the way in which this information might be used in the future and also possible for us to be able to make suggestions about future questions? I know this is an area close to my scalp, but hair does not get a mention, although quite a few people have commented on hair regrowth.   I know this might involve more work, but I would be prepared to record people's comments and group them to make it easier.   I would also be willing to do that for any other feedback people would like to make.PS What does REDUX stand for? Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Michele- Suggestions are invited, absolutely. This survey is already a expanded from the first one, in part a result of suggestions from members. I hope to refine the instrument over time so critique is always welcome.What will happen to the data is it will be compiled and given in a report as the first survey was. The results of the first survey have been available under the Surveys link and can be found at this link. I did not do so with the survey given in October, although I spent hours and hours working the data, as it appeared there were some problems in the responses as the patterns emerged. So I spent more hours trying to improve the way questions were presented to help avoid those problems, the current offering being the result. REDUX is a Hollywood reference to a Re-Do of something such as when a director re-edits a previously released movie, as in "Apocalypse Now: Redux," one of my favorite examples of the genre.In the next version I will probably drop out many questions which did not seem to be useful, and add some others which we have hypotheses or experience about.CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60

 Jim, please eliminate my two attempts to complete the survey this morning. I couldn't pass the first page, because of the "server error". Sorry, maybe my computer will behave in the evening. Barbara.  RRMS, entering SPMS when diagnosed in Nov,2002. On CAP since Feb,2005, intermittently every two months for two weeks since April,2006. EDSS 5.5 at the beginning, zero since April 2003.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

Hi JimK,

I just took the survey and have a couple of suggestions. One is that you add a category of "n/a" to questions that don't pertain to everyone, such as the questions about menstrual issues. The other is that you give the opportunity to read and edit the answers at the end. I realized, for example, when I finished that I had been thinking of restless legs when the question of restlessness came up, but there was a later question about restless legs which was more appropriate for me to answer. Maybe I could have gone back through before I clicked finish but I didn't want to risk screwing the whole thing up. Otherwise, great survey!!

  Started CAP in June 2006 for treatment of brain fog and memory issues, allergies.

On CAP from June 2006 to July 2008 for high blood pressure, nasal allergies, restless legs, memory and cognitive problems. On intermittent CAP from July 2008 to August 2009. Currently: using RIFE Machine and under treatment with a Naturopath, symptom free

BlackeyedsusanI will note the suggestions you make and record them for future use. Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

 Yes, Basil- Got it!CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

Don't forget to do the survey! I'd like to do some initial colating of results by the end of February, so please fill out the survey before then if you can. CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

How is the survey tabulation coming along? Some data to support the protocol may be helpful for the fund raising efforts.

 CFS-2004

CFS-2005 CPN 2500mg NAC daily

Material is ready to tabulate and analyze, but I haven't had a spare moment when I've also had the spare energy-- a lot of work right now and the continuous treatment takes a little getting used to. Hopefully I can rope in Ron to help out, as I need some spreadsheet expertise I don't have. CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

Sure, send me what you have, Jim.

Ron
On CAP for CFS starting 01/06 (NE Ohio, USA) Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

I just took the survey and wondered what to do on questions that I didn't know the answers to or didn't apply to me yet.  For instance, I just started a CAP a couple weeks ago, so it just hasn't been long enough for me to be able to answer some questions (like menstruation or pulsing) and my only choice was to answer NOT AT ALL, but this may not be true and may skrew up your survey.  Just thought you might want to have an N/A box and an "unsure" box for people who just can't answer certain questions yet or for questions that they just don't know how to answer. Also, I meant to leave my email, but accidently hit enter too soon, and didn't know how to get back to leave it.   It then asked me for my log in to edit the survey, but when I typed it, I was told it was incorrect, but when I used the same log in on the home page, it worked.  I'm not sure what happened.Reve' 

Memphis,TN - FMS, IBS, rhinitis, depres (~20 yrs) CFS, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPn titer 1:256.  CAP 6-07 Current NAC 2400mg; doxy 100mg x2, Biaxin 500mg x2, supplements, 1st pulse Flagy

Hi Jim,As I haven't officially had my first pulse, I will fill it in right after I have in August.  That is, unless of course, you advise me otherwise.Thanks again for all your hard work behind the scenes!Grace & PeaceRuthCFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<