Much ado about a small poll

Submitted by Jim K on Mon, 2006-01-16 21:09

Summary of our Cpn 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 CFS/FM, MS and other "autoimmune" diseases, 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 infections 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/FMS. 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)
Asthma = 3% (1 vote)
Cardiac disease = 3% (1 vote)
OTHER = 10% (3 votes)
Total votes: 29

Serology
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 serology for Cpn, suggesting that they are engaging in a completely empirical (based on symptoms or theoretical connection between disease and Cpn) protocol.

Antibiotics
I take AT LEAST TWO of: doxycycline/azithromycin/roxithromycin/rifamcin/minocycline/INH-: 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 NAC for the EB phase I have reported it separately.

Bacteriacidal Agent Used-
I take metronidazole (Flagyl) for bacteriacidal pulses
81% (13 votes)
I take tinidazole (Tinactin) 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.