Much ado about a small poll

Summary of our Cpni Treatment Poll:

The poll was out for two weeks, and represents a snapshot of protocol users at this point in time. We had slightly different numbers participating in each section of the poll, perhaps some questions did not have exclusive answers for those voters. Obviously, 25-28 people is not enough to draw scientifically valid results from, but I intend to speculate on some suggestive patterns in the data.

Gender:
Female: 61% (17 votes)
Male: 39% (11 votes)
Total votes: 28
This ratio is commonly reported in CFSi/FM, MSi and other "autoimmune" diseasesi, so is not surprising. We would expect that if more people with Cardiac diseases were searching out Cpn treatment, with a higher male to female ratio, this might change.

Age:
20-29 years = 7% (2 votes)
30-39 years = 14% (4 votes)
40-49 = 32% (9 votes)
50-59 years = 39% (11 votes)
60-69 years = 7% (2 votes)
Total votes: 28
Our largest group is between ages 40 to 59. I suspect that this age does not reflect the period when people are morel likely to be infected, but rather a range where long term persistent infectionsi are have accumulated enough damage to force us to seek out "desperate measures" such as the multi-antibiotic protocol recorded here.

Primary diagnosis:
Over half the total in the poll have a diagnosis of MS. The second largest group are those with a diagnosis of CFS/FMSi. This likely influences the treatment response reported later which suggest that improvements are noticed most after 5 or more pulses.
CFS/FM = 28% (8 votes)
MS = 55% (16 votes)
Asthmai = 3% (1 vote)
Cardiac disease = 3% (1 vote)
OTHER = 10% (3 votes)
Total votes: 29

Serologyi<
Positive blood test for Cpn
48% (12 votes)
Negative blood test for Cpn
16% (4 votes)
Not been tested for Cpn
36% (9 votes)
Total votes: 25
Well over half either have negative or no serologyi for Cpn, suggesting that they are engaging in a completely empirical (based on symptoms or theoretical connection between disease and Cpn) protocol.

Antibioticsi<
I take AT LEAST TWO of: doxycycline/azithromycin/roxithromycin/rifamcini/minocycline/INHi-: 73% (19 votes)
Single antibiotic only: 20% (5 votes)
I take only INH: 8% (2 votes)
Total votes: 26
This poll speaks for itself. 73% are already on the dual antibiotics, a small number appear to be early in treatment, confirmed by findings below that 40% have not yet done a pulse of bacteriacidal,  and have only added one agent. As INH is used as a single agent with the flagyl pulses in some versions of the Cpn protocol and, together with NACi for the EBi phase I have reported it separately.

Bacteriacidal Agent Used-
I take metronidazolei (Flagyl) for bacteriacidal pulses
81% (13 votes)
I take tinidazole (Tinactini) for bacteriacidal pulses
19% (3 votes)
Total votes: 16

Pulses of bacteriacidal
I've done NO pulses yet of metronidazole/tinidazole
40% (10 votes)
I've done some partial pulses of metronidazole/tinidazole
4% (1 vote)
I have had LESS than 5 full pulses (at least 5 days each) of metronidazole/tinidazole
24% (6 votes)
I have had MORE than 5 full pulses (at least 5 days each) of metronidazole/tinidazole
32% (8 votes)
Total votes: 25
Over half in this small pole have done at least a full pulse of bacteriacidal agent, with only 8 people reporting 5 full pulses or more. This shows that we are still, as a group, in earlier phases of treatment. As the results below suggest, more significant improvement starts to accrue beyond 5 pulses of the bacteriacidal.

Response to treatment-

1. On 1 0r 2 antibiotics ONLY My primary condition is the SAME or WORSE
13% (3 votes)
2. On 1 0r 2 antibiotics ONLY My primary condition is SOMEWHAT improved
13% (3 votes)
3. On 1 0r 2 antibiotics ONLY My primary condition is SIGNIFICANTLY improved
13% (3 votes)
4. Less than 5 full pulses: My primary condition is the SAME or WORSE
13% (3 votes)
5. Less than 5 full pulses: My primary condition SOMEWHAT improved
9% (2 votes)
6. Less than 5 full pulses: My primary condition SIGNIFICANTLY improved
4% (1 vote)
7. MORE than 5 full pulses: My primary condition is the SAME or WORSE
0% (0 votes)
8. MORE than 5 full pulses: My primary condition SOMEWHAT improved
13% (3 votes)
9. MORE than 5 full pulses: My primary condition SIGNIFICANTLY improved
22% (5 votes)
Total votes: 23

These results are more obvious when grouped.
If we collect together everyone in early phase of treatment (#1-6) and we see that 26% are the SAME or WORSE
28% are SOMEWHAT IMPROVED
17% are SIGNIFICANTLY IMPROVED
Actually, to have 35% already reporting any improvement in their condition this early in the protocol is striking to me. I expected less noticeable improvement at this stage, especially given the numbers being treated for otherwise "intractable" diagnoses such as MS and CFS/FM.

But it is when users of the protocol get to 5 pulses (#7-9) or more, in this small sample, that the number in SIGNIFICANTLY IMPROVED seems to begin to creep upwards. Perhaps when we get a better sample of longer term users we will be able to sort out the "magic number" of pulses where more significant improvements take place. From reports in blogs and forums on this site, somewhere around 7-9 pulses seems to be a period where people are feeling much better and more significant changes in their primary diagnosis are occurring.

Comments

Great poll thank you for oding it Jim. I agree that he numbers have more impact if they are divided out a bit as in your analysis.
This is important stuff we can really offer the treatment community at large.
Marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

I'm new to this community and would be interested to know how many registered members there are on here overall. It would be interesting to see what precentage of people managed to vote and I would encourage we repeat this poll every few months maybe (Quartely?).  People new to the community would be more encouraged if more people are seen to be using the Protocolsi and seeing benefit.  I am not yet doing the treatment as I need to convince my GP somehow but this should help I reckon.


On Wheldon Protocol for MSi since Feb 2006, West Sussex, U.K.

Welcome Hyder!

There are currently about 150 members of the website, at least 50 are quite recent, and are just finding out about it, a few others have been "lurking" for a time, like you waiting to see if the reports convince them. So, that means about 25% of our active (not new) members took the poll. It is my intention to repeat this poll every few months as you have also suggested, and to gather information over time.

We should add to this that I have seen data from Dr. Powell of 95 patients treated on this protocol for a variety of conditions, RAi, CFSi, FM, Lupus, all of whom have finished a full treatment program, and all of whom have had either significant or complete improvement. None of these people are members of this site, so we are missing their input. They are not looking for a treatment protocol which works, nor for a support community, because they are now well. The same holds true for David Wheldoni, who has treated a number of people for various Cpni related conditions with positive outcome. Perhaps we can get further anecdotal report from him as he reviews his case files.

We also have a large number of members who are treating MSi, a disease which is essentially "untreatable" and which one expects no improvements on. So any  improvements in the course of using the protocol (of which you have many reports here and on ThisIsMs.com) are "impossible." So, the small numbers in our poll are a bit belied by the fact that for a number of the voters, they should not be reporting any improvement at all. Even "Somewhat Improved" is a bloody miracle!

Also, please take a look at the Stratton/Mitchell patent materials referenced in our links and research sections. They have brief case presentations listed at the end, which gives another snapshot as to the effectiveness of the protocol.  

On Wheldon/Stratton protocol for Cpn in CFS/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

It is very impressive how fast we are growing. Occasionally, I noticed that there were 180 guests on line. On Christmas we had 122 members.

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

Lets hope the numbers continue to grow.  Thank you Jim for the info and I agree that the simple fact that MSi sufferers see any improvement at all is amazing in itself.  From what I had read everything looked pretty hopeless until I discovered Dr Wheldon's site and the recent photo of Sarah balancing on one leg is truly an inspiration to us all.


On Wheldon Protocol for MSi since Feb 2006, West Sussex, U.K.

When I was answering this small poll, I only hoped, that any antibiotic can help me.  Only after 5 - 6 weeks I could say, it works. Doxycyclin 200mg for 20 days and then 1 g azithromycin in a week. Now in total 7 weeks. The last week I added acetylcystein 600mg twice a day. My  stiff back are after all terrorless, my hands are without pain,  brain fog is away. I have still pain in both legs, I can not sit. But it seems, there is progress too. I think that repeating of he poll will be very useful. Maybe it will be useful to divide it according to diagnosis. If there is some mistake, I apologise. I am not the native speaker in English.

Jan

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i... 

Jan- I'm very happy for such quick improvements for you!  I will repeat the poll in a month or two, with improvements!

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

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