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not happy

Got word yesterday the my gp refused to do the treatment. He says it is too experimental andwould not even  call dr. stratton. Now what do I do. I have minocin and will continue to up it. Any suggestions appreciated. Pretty depressed.

looking for a dr.

Before I decide to travel out of state for treatment. Does anyone know of a dr. in the new york area. I am a little uncomfortable with my gp administering a protocol.

Hi introducing myself


I am new to this site and thankful to you all.I was diagnosed with sjogren's (dry eyes mouth). I have no positive blood work  and no family history of autoimmune but mom had severe cardiac and father had emphysema. My husband had rai in remission and dog has lupus(dry eye) dr. put dog on tetracycling and he is symptom free.I have a postive iggi and igm for cpni. I have been sick 3 years.Maybe longer but purchase of a new house was very stressfull and I got sick. Started with a swollen lymph node in neck and every spring and fall I flare. I get better in the evening and when I told the dr. this he said it was because I knew I was going to sleep.ugh. I also had severe night sweats and insomnia depression and panic that slowly resolved with treatment. Only to flare again aug 24 same day as last year.

Evidence of chronic Chlamydia pneumoniae infection in patients with Behcet's disease.

Scand J Infect Dis. 2004;36(6-7):428-30. Evidence of chronic Chlamydia pneumoniae infection in patients with Behcet's disease.

Ayaslioglu E, Duzgun N, Erkek E, Inal A.

Department of Infectious Diseasesi and Clinical Microbiology, Kirikkale University Faculty of Medicine, Kirikkale, Turkey.

Behcet's disease is a chronic vasculitisi of unknown aetiology. Particular viral and bacterial pathogens have long been suspected of playing a role in the pathogenesis of the disease. Chlamydia pneumoniae is an intracellulari bacterium capable of causing chronic infections. Some reports have suggested that the microorganism might be involved in the pathogenesis of vasculitis. The purpose of the present study was to investigate a possible correlation between C. pneumoniae infection and Behcet's disease. For this purpose, 90 consecutive patients with Behcet's disease and 50 healthy controls were enrolled. Immunoglobulin A (IgA) and IgG antibodies to C. pneumoniae were determined by 2 different techniques, namely indirect fluorescent antibody assay (IFA) and enzyme linked immunosorbent assay (ELISA). IgA antibodies to C. pneumoniae were detected in 17 (18.9%) patients with Behcet's disease and in 1 (2%) healthy control by IFA. By ELISA 27 patients (30.0%) and 6 controls (12.0%) had C. pneumoniae IgA. A significant difference was observed for IgA seropositivity between the 2 groups. Although IgG seropositivity between the 2 groups did not differ significantly, the number of individuals with IgG titres of > or = 1:1000 was significantly higher in the patient group (43.1%) compared with the control group (13.9%). These finding provide serological evidence of chronic C. pneumoniae infection in association with Behcet's disease.

Dr. Michael Powell: A Rheumatologist Treating Cpn in CFIDS, FM, Lupus and other "auto immune" disorders

I spoke with a rheumatologist in California, Dr. Michael Powell, who is cautiously using a combination of antibioticsi in conjunction with standard therapeutics for the treatment of nanobacterium (including Cpni) in patients suffering from FM, CFSi 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 serologyi for Cpn when other clinical signs lead him to suspect some involvement. Serologic assays for IgGi, IgM and IgA are sent to confirm infection prior to treatment. He would like to see a positive serologyi 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 intracellulari 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

INHi and supplementsi for endotoxinsi-
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 NACi 600 mg twice daily, INH 300 mg once daily before breakfast, and metronidazolei 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 infectionsi 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.

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