Report on 1^st Cpn Combination Antibiotic Protocol (CAP’s) Survey

Jim K

Copyright www.cpnhelp.org April, 2006

Our first survey was started soon after the website was put up. It answers some broad questions and sets the stage for more refined future surveys. It is a small sample of folks, 23 in all, but all have been on a CAP’s for at least three months, and many much longer. But we have enough to have actual graphs, and I’ve even tried looking at some subgroups!

First the basics, who took the survey:

Average age = 44

Average age symptoms appeared = 33

Female = 13

Males =10

Formal Diagnoses: persons may have more than one diagnosis

7 MS Continuous

6 MS Relapsing/Remitting

2 Interstitial cystitis;

2 Prostititis

2 Sinusitis, chronic

1 Relapsing pneumonia

2 Other respiratory

6 Fibromyalgia

5 Chronic Fatigue Syndrome

Serology for Cpn:

13 Not Tested

6 Positive

4 Negative

Months before started bacteriacidal

Average 3

Min 0

Max 12

Months on protocol?

Average = 9.86

(8.8 eliminating one 32 month entry)

Min 3

Bacteriacidal currently used

18 Flagyl (metronidazole) 4 Tinactin (tinidazole)

List all symptoms you which significantly effect you.

Figure 1

Comments: Note the sharp improvements in fatigue, allergies, anxiety, memory difficulties, tremors (down to zero), urinary problems, cough, sinusitis and respiratory problems. Repeated infections dropped down to zero, arguably a result of the antibiotics alone, but the concomitant huge drop in repeated colds/flu which are viral in nature suggests that there is also important immune system improvement, perhaps as immune cells are rid of Cpn.

Modest improvements are seen in coordination problems and exercise tolerance while no differences reported in inflammation and paralysis.

Some worsening of pain, depression, numbness and tingling (a variable which may have confounded two different symptoms together), along with the inflammation reported as the same suggests that these are a result of the treatment itself, ie Porphyric and cytokine results of the protocol. The finding on paralysis is consitent with reports that, in MS, long term damage to nerves may not recover past a certain point.

Negative reactions starting/adding second ANTIBIOTICS

The chart below illustrates that the reactions in this group to starting antibiotics range across the board, but that the most 61% report no to moderate reactions. This should make people considering starting the protocol a bit less anxious about facing initial treatment reactions. Of course, your individual results may vary from this.

Figure 2

Negative reactions to starting bactericide

A similar story is shown here to starting bacteriacide (Flagyl or Tinidazole). Again, 68% report reactions ranging from zero to moderate, with only 32% reporting strong or severe responses.

Figure 3

Improvement since starting protocol

These preliminary results are encouraging, with only 17% reporting symptoms have stayed the same on the protocol. The gap between “somewhat improved” and “significantly improved” may be due to some confusion about the middle choice “improved” so people chose a category on either side. In any case, 74% report improvements split equally between somewhat and significantly improved, a great finding for all of us.

Figure 4

Level of impairment:

Level of impairment was defined on the survey as below-

Mild impairment- symptoms noticeable to you but do not

affect day-to-day capacity to function in most areas of your life.

Moderate impairment- symptoms affect your day-to-day capacity

to function in a number of areas of your life.

Severe impairment- symptoms affect your day-to-day capacity to

function in a most of areas of your life.

We can note that there has been a big shift downward in severe and moderate categories, showing larger groupings in the mild and moderate impairment as a result of CAP’s treatment. Whether the moderate impairment group will shift further to mild may be a function of more time. It also may be related to the particular diseases being treated for.

Figure 5

Comparing MS & CFS/FM Subgroups:

Although these compare very unequal groups (13 MS, 6 CFS/FM) I thought it might give us some useful preliminary data to look at how different diagnoses compare in treatment response. Note that one person was co-diagnosed with MS and CFS, and was put into the MS category.

We note that the CFS/FM group reports more severe impairment before the protocol, and an apparent shift of 2 people from severe to moderate, and 1 person from mild to moderate, not surprising given the initial effects of the protocol. The MS group shows a more consistent shift in improvement across the board, encouraging news!

Level of impairment

Figure 6

MS	CFS/FM

This finding is of note in that the CFS/FM group clearly had stronger reactions to antibiotics (starting or adding) than the MS group. The numbers are still too small for any firm conclusions, but it does seem as if the more focal nature of MS infection may lend itself to less bacterial load overall, and thus less secondary porphyria and other die-off reactions than CFS/FM.Negative reactions starting/adding second antibiotic

Figure 7

MS	CFS/FM

We find similar reports to the reactions to Flagyl/Tinidazole (again, watch the small numbers in the CFS/FM group in terms of making firm conclusions) with the CFS/FM reporting a higher range of reaction (severe) and a greater proportion in the strong and above level of reaction. MS subgroup by comparison has most reporting mild to moderate reactions with only a few in strong or severe reactions.

Negative reactions to starting bactericide

Figure 7

MS	CFS

Improvements are a bit more suggestive, in that the MS group shows slightly more modest improvement levels than the CFS group. We would expect slower improvement in MS, and this may be also a sign that some base level impairment may be less recoverable: the earlier started on the CAP’s, the better. For all the severity of reaction to treatment, the CFS/FM group reports more “significant improvement” from treatment. Again caution in comparing with such small numbers.

Improvement since starting protocol

Figure 8

MS	CFS/FM