Chronic Fatigue Syndrome
Syndrome characterized by viral or chemical onset, unrelenting fatigue, unrefreshing sleep, sleep disorder, immune abnormalities.
One of the best sites on Chronic Fatigue is http://www.phoenix-cfs.org run by Cort Johnson. It is this site that Astrodiana's story of recovery from CFS via treatment in 1998 with Dr. Stratton. Our site was given nice mention in this month's newsletter and research report:
"HOT LINK OF THE MONTH– If you were intrigued by Diana’s rather amazing recovery after suffering from CFS for several decades then check out this beautiful site on Chlamydia pneumoniae http://cpnhelp.org/. There lots of information you can't get anywhere else and there is a link to Diana’s story on it."
Diana was one of the last people tested at Vanderbilt before the Cpn lab closed and was evaluated and treated by Dr. Stratton with the help of her local physicians. Her full story is fascinating as it charts a course many of us with CFS and FM are all too familiar with. She also provides so glimpses into the bigger studies Dr. Stratton participated in suggesting up to 50% of CFS patients may be Cpn related.
Astrodiana has her full story at this link:
Diana will be condensing this story for this site, but in the mean time I thought you'd like seeing the original missive.
These findings from a Stanford researcher using a new antiviral drug may be of help to CFS sufferers here, and keep us reminded that Cpn isn't the only bug out there. Dr. Stratton has commented that in CFS and other diseases we simply don't know if killing the Cpn will resolve symptoms in all cases. It's prudent to keep aware of emerging possibliities and even supplements to CAP's in appropriate cases.
I have culled from Mitchell & Stratton patent #6,884,784 an exhaustive list of diseases where Cpn has been implicated as a possible cause or co-factor (reference: Mitchell & Stratton patent #6,884,784):
Diseases where an association has been discovered between chronic Chlamydia infection of body fluids and/or tissues with several disease syndromes of previously unknown etiology in humans which respond to unique antichlamydial regimens include:
Editorial comment: Strong findings from their research. If you have any of these it suggests to me that at least an empirical course of the combination antibiotic therapy is strongly indicated, with or without serology.
Multiple Sclerosis (MS)
Rheumatoid Arthritis (RA)
Inflammatory Bowel Disease (IBD)
Interstitial Cystitis (IC)
Autonomic nervous dysfunction (AND neural-mediated hypotension);
Pyoderma Gangrenosum (PG)
Chronic Fatigue (CF) and Chronic Fatigue Syndrome (CFS).
Does it work?
It has been noted that most users of the combination antibiotic protocols commenting here have not been on the treatment long enough to give a big enough pool of reports to feel assured of the efficacy of this approach. I had asked Drs. Stratton, Wheldon, and Powell to perhaps tally up at least some basic numbers from their case experience to help us out with this problem, but this would involve problems of confidentiality and use of private data, etc.
Then, I suddenly realized that we already have a good list of anecdotal reports of response to treatment reported data available to us... right in the Stratton/Mitchell patent materials! (Sheepish, embarrassed grin). So I took it as a project to summarize this data by disease treated. Occasionally I have used the exact wording from the patent materials as they were brief and descriptive. We have the full text referenced in our treatment and links if you want to see more detail.
All reported had with positive serology for Cpn using the highly sensitive tests developed by Stratton/Mitchell. I left out a few whose diagnosis was not clear to me, you can see them in the patent materials #6,884,784
All on some form of the combination antibiotic therapy protocol.
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.
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.
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.
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
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.
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.
I spoke with a rheumatologist in California, Dr. Michael Powell, who is cautiously using a combination of antibiotics in conjunction with standard therapeutics for the treatment of nanobacterium (including Cpn) in patients suffering from FM, CFS and autoimmune disorders. His results with this treatment program have been encouraging. He faxed me some examples of patient feedback forms, excerpts from which you can see below. Recovery is not instantaneous, but tends to occur over a 6 to 12 month period. The graphs of subjective improvement are drawn from visual analogue scores compiled during each visit. When summarized in this manner these data give a time-lapsed impression of the response to treatment.
One of the interesting things he mentioned was in relation to negative patient serology for Cpn when other clinical signs lead him to suspect some involvement. Serologic assays for IgG, IgM and IgA are sent to confirm infection prior to treatment. He would like to see a positive serology in patients before engaging them in a combination antibiotic protocol, but recognizes that patients may not have antibody reactions. This may be due to the ability of intracellular organisms like Cpn to evade a humoral response (antibody production), immunoglobulin depletion, or other factors. In these cases, when there is a high index of suspicion for the infection without a humoral response, he tests the spouse of the partner for Cpn. He sees the "non-symptomatic" partner as a good indicator of Cpn in the patient, given the infectious nature of Cpn. Thus far, most spouses are positive when an ill family member is non-reactive.
In our discussion Dr. Powell pointed out the many similarities between TB and Cpn. Both organisms can evade our immune system. Both organisms can be carried from the lungs, the original site of infection, and infect other tissues. Both require prolonged treatment with multiple drugs to eradicate the infection. Both are sensitive to stress levels. Optimal therapy is being evaluated at various research centers and new medications for Cpn are on the horizon (see activbiotics.com).
INH and supplements for endotoxins-
Dr. Powell finds most patients improve on a standard combination antibiotic protocol for Cpn. Rheumatologist have apparently been using doxycycline for many years with success for inflammatory arthritis but there is evidence that using doyxcycline in combination with rifampin is even more effective. Some patients plateau after about 8 months of treatment he has found variations in the treatment protocol have made a difference. One protocol he uses involves the use of NAC 600 mg twice daily, INH 300 mg once daily before breakfast, and metronidazole 500 mg twice daily pulsed with 5 days on and two weeks off. It is essential to start each agent separately and gradually increase the dose over weeks or months as tolerated. The use of Vitamin C 500 - 1000 mg four times daily (the half life of vitamin C is 30 minutes and little remains after 3 hours) to offset the release of toxins during therapy. B6 is important to control INH related peripheral neuropathy. Monthly laboratory evaluation of AST, ALT, Cr, and CBC are recommended for all who engage in this protocol. It is not uncommon for liver enzymes to show a mild elevation during the initial stages of treatment. Antibiotic therapy should be temporarily discontinued during periods of toxicity, should it arise. He emphasized the importance of insuring that yeast and fungal infections do not overgrow during protracted antibiotic use. He recommends the use of acidophillus, nystatin, diflucan, oregano oil, and/or grapefruit seed extract as needed to prevent secondary opportunistic infection during treatment.
Covering for the possibility of yeast and fungal overgrowth during antibiotic therapy is essential. If diarrhea develops, stool must be evaluated for antibiotic associated diarrhea (C. difficile). This is not a simple protocol and it is best if it is guided by an experienced clinician who is familiar with the medications and methods of minimizing toxicity related to killing the nanobacterium.
A link to Dr. Powells clinic may be found on our links page. Dr. Powell does do telephone consultations by arrangement and may be a resource for those who have had difficulty finding a Cpn knowledgeable doctor in their area. He requires an initial visit with a physical examination before initiating therapy (lab work can be performed prior to the initial visit to facilitate diagnosis and treatment), and monthly laboratory testing with monthly phone consults are then the norm. Treatment of related hormone imbalances in the thyroid system and nutritional support, temporary antidepressant support as needed, and sleeping medications are useful adjuncts to the antibiotic protocol. It is necessary for patients to have a primary care physician to monitor health matters that are unrelated to FM, CFS and autoimmune disease.
The links below will take you to pages with specific information involved in the treatment of Cpn.Diagnostic Testing For Cpn
Information on serological testing and the problems of this in Cpn.
Combination Antibiotic Treatment Protocols for Cpn
Links to pages on the current versions of Vanderbilt/Stratton and Wheldon Protocols for treating Cpn infections in various diseases.
Commentary and interviews with various experts in treating Cpn which help guide and inform about various facets of treatment.
Information on some of the kinds and sources of treatment reactions one can expect on combination antibiotic protocols in treating Cpn, including cytokine reactions, endotoxin reactions, secondary porphyria and other reactions. These are often lumped under the term "herx," an inaccurate term and not as useful as really understanding what's going on.
Fibromyalgia (FM) is a commonly misunderstood, sometimes misdiagnosed rheumatic disease. The main symptoms are achiness, pain (more in the muscles than in the joints), stiffness, fatigue, accompanied by headaches, depression, sleep disorders, Raynaud's and irritable bowel syndrome. The sites of pain are located in specific areas call-ed tender or trigger points.
The painful tender points are located where the ligament attaches the muscle to the bone. There are 18 tender point locations. Sensitivity at 11 points defines a diagnosis of fibromyalgia. FM is not life threatening nor does it cause physical deformities. Many lab tests are within normal range. In fact, most patients look extremely well and fit, making it difficult to account for the degree of clinical suffering they are experiencing, yet 10-30% of fibromyalgia patients are disabled to some degree because of their disease symptoms.