Submitted by Jim K on Sun, 2005-11-06 16:33

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.  65 year old patient52 year old patient 39 year old patient 

Comments

Please note: the examples in the charts are intentionally selected to illustrate what is possible with proper treatment, and not intended as an indication of how all patients respond to treatment. On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.

Wonderful resource Jim! Thank you for interviewing Dr Powell and for posting this.  Thanks to Dr Powell for making himself available for this and for exploring this emerging field.  How interesting that he confirms what our collective experience has been-that CPn serology is not necessarily positive in the symptomatic person.  This is reassuring for those going through treatment without this kind of laboratory data but who are symptomatic.  It is outside the traditional medical box!  But if you are slowly dying of MS and have RA as well and asthma, while it might be traditional to be told there is nothing any one can do, it is not good medicine.  Thank you to all the physicians bravely stepping into the gap and helping people in need.Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

These graphs are inspiring anecdotes and Dr. Powell should be commended for taking the time to participate here. As many of you know I'm a patient of his and admire him greatly. He's truly a scientist-practitioner, rare in today's generally dogmatic and unquestioning medical practice climate.

This is quite exciting, Daunted!  Is he treating you for ms?[sorry, brainfog today]It would be very exciting to see how the ms patient's graphs compare.  Every day my faith in this regime is renewed!:)

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

INH is Isoniazid. From: http://www.atdn.org/access/drugs/ison.html "Isoniazid is used as a first-line treatment for tuberculosis (TB) in combination with other drugs for the treatment of active disease. Isoniazid is also used for prevention of TB in people who have been exposed to active disease but have no symptoms. Side effects Peripheral neuropathy is the most common side effect. Signs and symptoms of peripheral neuropathy are numbness, tingling, or an unusual sensation such as burning or prickling on the skin. Hepatitis is the most dangerous. Hepatitis is an inflammation of the liver. Signs and symptoms of hepatitis are yellow eyes and skin, nausea, vomiting, anorexia, dark urine, unusual tiredness, or weakness. Severe reactions may occur if you eat foods containing high concentrations of tyramine such as aged cheeses, avocados, bananas, beer, caffeinated beverages, chocolate, sausages, liver, overripe fruit, red wine, smoked or pickled fish, yeasts, and yogurt. Dosage Isoniazid comes in tablet, syrup and injectable forms. Isoniazid must be used cautiously if you have a history of liver damage or chronic alcoholism. While safety is not established, isoniazid has been used with ethambutol to treat TB in pregnant women without harm to the fetus. Dosage is 5-10 mg/kg/day (usually 300 mg) or 15 mg/kg 2-3 times per week. Take the drug on an empty stomach, at least 1-2 hours before meals. How long it may take to work Resolution of symptoms indicates treatment is effective. TB drugs may have to be taken for as long as 2 years. Managing side effects Isoniazid must be taken with vitamin B6 to reduce the incidence of peripheral neuropathy. Take 40-50 mg of vitamin B6 per day. If GI irritation becomes a problem, drug may be administered with food, although food decreases absorption of isoniazid. Antacids may also be taken 1 hour before administration. If you are being treated by injection, you may experience discomfort at the injection site. Massage site after administration and rotate injection sites. Notify your doctor if any signs or symptoms of peripheral neuropathy or hepatitis occur. Changes in visual clarity, eye pain, or blurred vision should be reported. Avoid the foods listed above. These can cause redness or itching of the skin, hot feeling, rapid or pounding heartbeat, sweating, chills, cold clammy feeling, headache, or lightheadedness. Notify your doctor if any of these reactions occur." On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.

Jim K- The first day I went to see Dr. Powell was the day you posted these graphs.  Dr. Powell in fact showed me the same graphs that very day.  Dr. Powell also believes stress holds a huge part in getting well in this whole process. Dr. Powell said that the last person you put on there the 39 year old sick for 8 years started doing more things stressful again because she started to feel better.  If you notice that she went up and was progressively going upward and then at six months fell again.  Dr. Powell said how important it is in recovery of Cpn to not go 100 miles an hour when you start to feel better or you could cause damage to recovery process. 

Has Dr Powell applied recent studies regarding the use of Mycobacterium Vaccae in treatment of TB and could this benefit in restoring Seratonin levels and bringing balance to the th1/ th2 immune dynamic?

Wife with CFS/FM/REYNAULD'S 15YRS Lab positive for CPn/HHV7&11/EBV. Son 17yo with FM 3yrs- both on all supplements since 8/08 Started CAPs per Strattons modification (clindy/pyruvate/doxy) started 11/17/08