How to Approach Your Physician About Providing Antibiotic Treatment
The Road Back Foundation's most frequently asked question is, "What doctor in my area is using antibiotic therapy for rheumatic disease?"
For many years, patients traveled long distances to be treated by the late Dr. Thomas McPherson Brown, the rheumatologist who pioneered the antibiotic treatment. Gradually, the success these patients experienced on the therapy convinced their local physicians of the efficacy of the treatment, and many of these physicians then took over the care of these patients. The antibiotics were not offered as standard conventional therapy, but if you knew about the treatment and requested it, the physician often agreed.
Patients who had seen success while using antibiotics for their rheumatic disease spent many years lobbying Congress to get the National Institutes of Health to do the clinical double blind studies that would validate this treatment and thereby make it available to millions of patients around the world. The first US study using minocycline for rheumatoid arthritis, called the "MIRA" study, was completed in April 1993, and the results were reported in the Jan. 15, 1995 issue of The Annals of Medicine. The study reported that minocycline is a safe and effective treatment for rheumatoid arthritis.
The results of this 48 week study have opened the door so now physicians can offer the treatment even though the Federal Drug Administration has not specifically approved tetracyclines for use in treating rheumatic diseases. Approval of the tetracycline family of drugs (minocycline, doxycycline, and the older version, tetracycline) was given long ago for treating infections; these are not new drugs.
If you are interested in receiving antibiotic therapy (often referred to as "AP" or antibiotic protocol), we offer the following suggestions:
1. READ THE LITERATURE:
The groundbreaking book, The New Arthritis Breakthrough by Henry Scammell with Thomas McPherson Brown, MD, M. Evans & Company of New York Publisher, is available through your local bookstore or through The Road Back Foundation"s web site, www.roadback.org which will link you to access (EDUCATION drop down menu area). The book will help you understand antibiotic therapy used in the context of rheumatic disease. Inside that book is the original book about the work of Thomas McPherson Brown, called The Road Back. Scammell had also written another book especially for scleroderma patients called, Scleroderma: The Proven Therapy That Can Save Your Life. There are other books now available that you may additionally wish to read that will inform you about antibiotic therapy used to treat rheumatic disease.
2. ASSEMBLE LITERATURE FOR YOUR PHYSICIAN
The Arthritis Foundation of America has listed minocycline as a DMARD (Disease Modifying Anti-Rheumatic Drug) and you can print their list to add to the literature for your physician. http://www.arthritis.org/conditions/DrugGuide/chart_dmards.html
The kind of information you chose might be determined by the specialty of the physician with whom you are consulting. More traditional practitioners may be enthusiastic to see that minocycline is mentioned in conventional literature where as less traditional providers may be interested in the more diverse applications of antibiotic therapy.
The Road Back Foundation web site (www.roadback.org) has also provided you with material to print and bring to your physician. You might consider printing some of the clinical trials and research papers listed under the STUDIES pulldown section of the main menu
3. BECOME INFORMED
A rheumatologist, experienced in using antibiotics for his rheumatic patients, commented that those patients who were not able to give him good information about their disease were usually failures in the treatment and would drop out before achieving success. A patient who takes responsibility, participates in his or her treatment, learns about the disease and provides good information to the doctor has a higher chance of success. Keeping a journal of changes noted in disease symptoms is a valuable tool for both you and your doctor. If you need help with this, read the brochure pages on Journaling in Education of our web site. Take note of physical influences (outside activities, extra housework), environmental/medical influences (weather, change in medication) or emotional forces (stress). There are many factors which will determine response to antibiotics. Dose, frequency of dose, antibiotic chosen, prior infections and treatments as well as stress, diet, allergies and the strength of your immune system can all play a part in the treatment and the way your physician interprets your response.
4. ASK YOUR PHYSICIAN IN PERSON
When you have read all of the material, feel confident you can talk to your physician about this treatment, and have noted your disease symptoms, make an appointment to meet with your physician and talk to him/her face-to face.
Tell the physician that this is a treatment you would prefer, and that you would like to discuss why. A physician does not have to be a rheumatologist to prescribe antibiotic therapy. If your rheumatologist won't consider this treatment for you, consult a family doctor (general practitioner), internist, or possibly an infectious disease specialist. Offer the physician the information packet. Some physicians have expressed interest in reading the book about the treatment, so take it along with you as well. Some people are very shy and timid, and feel uncomfortable talking with a physician in this manner. If you are one of those people, enlist the help of your spouse, a family member, or a friend that can support you during the visit.
It has been our experience that many physicians will prescribe AP (antibiotic protocol) when asked; however, a note of caution. Physicians may have trouble finding time to read the material you are going to give them so they may not be aware of the best protocol for each situation. This treatment uses antibiotics at a much lower dose than physicians are accustomed to prescribing. This is one situation where a higher dose is not faster or better. It is your responsibility, using the material available on this site/books and/or the research you have done, to work with your provider to be sure he/she is prescribing an appropriate beginning protocol for you, periodically adjusting the medication if necessary to accommodate the ups and downs of your disease.
SOME COMMON ARGUMENTS DOCTORS USE AGAINST ANTIBIOTICS
1. "It hasn't been tested"
That response is no longer valid.´ A federal research facility, the National Institutes of Health, has now tested and reported its efficacy for its use with RA. It has also been tested by Dr. F.C. Breedveld of the Netherlands and Dr. James O'Dell, University of Nebraska and Dr. Pnina Langevitz in Israel. Other countries including Mexico, Australia, England, France, Sri Lanka, and Sweden are also testing and using antibiotics for treatment of rheumatic diseases.
2. "Antibiotics are not FDA approved for this disease"
Interestingly, once a medication has been approved for a specific treatment, physicians are free to use the medicine in treating other forms of disease. In the preface to the Physicians Desk Reference, it states, "Once a product has been approved for marketing for a specific disease, a physician may prescribe it for use or in treatment regimens or patient populations that are not included in approved labeling." Thus, the FDA states also that accepted medical practice often includes drug use that is not reflected in approved drug labeling. However, even though physicians are willing to use the treatment, they are not used to prescribing antibiotics in low doses, for use long-term the way the protocols specify. Arthritis Today, a publication of The Arthritis Foundation, has listed minocycline as a DMARD (disease-modifying-antirheumatic-drug) over past years but states it is "not currently FDA-approved for arthritis." An FDA approval process can cost millions. There is no incentive for a pharmaceutical company to take on this challenge as the patent exclusivity for these antibiotics has expired.
3. "Antibiotics have bad side effects"
All traditional medications now being used have side effects. But, side effects from these low dose antibiotics are minimal and are not generally dangerous (unless an individual is allergic to them) as compared to the more powerful medications: methotrexate, gold, Plaquenil, penicillamine, prednisone, etc. Tetracycline antibiotics have been used safely for decades by dermatologists to treat acne.
4. "I am not familiar with prescribing antibiotics this way"
Our web site provides material for you to print and take to your physician. Please review the different areas of text and compile the information that you believe is important for your physician to read.
The doses in the sample protocol/s are only a general guideline to a useful starting point that many physicians have considered. If you are not seeing improvement on the starting dose or you find that you react too intensely, the dose probably needs to be adjusted up or down accordingly, or a change in antibiotic might be indicated. Scleroderma patients may need to explore the approach that was used in the clinical trials, referred to in the text as "The Harvard Protocol." There are many approaches that can be effective and your partnership with your physician for your health care will help to determine the best way to administer antibiotic therapy. Again there are many things which can affect your response to treatment (allergy, other infections, stress, a weak immune system, etc.) and modifications in life style and other healthy changes could enhance the therapy.
The Road Back Foundation does not engage in the practice of medicine. Consult with a physician to assess any medical treatment that is being considered. The Road Back Foundation encourages healthcare consumers to thoroughly investigate and understand all treatments and medications before proceeding. This material is for educational purposes only.
The Road Back Foundation
P.O. Box 410184
Cambridge, MA 02141