Frequently Asked Questions (FAQs)

1. What are the abbreviations commonly used on the Bulletin Board/Chat Room?
   AS = Ankylosing Spondylitis
   AP = Antibiotic Protocol
   CFIDS = Chronic Fatigue Immune Deficiency Syndrome
   CNS = Central nervous System
   CREST = Calcinosis, Raynaud's Phenomenon, Esophageal Motility Disorders, Sclerodactyly, Telangiectasia
   DIL = Drug Induced Lupus
   FMS = Fibromyalgia Syndrome
   JRA = Juvenile Rheumatoid Arthritis
   MCTD = Mixed Connective Tissue Disease
   MTX = methotrexate
   PA = Psoriatic Arthritis
   pred = prednisone
   RA = Rheumatoid Arthritis
   RS = Reiter's Syndrome
   SD = Scleroderma
   SLE = Systemic Lupus Erythematosus
   SS = Sjogren's Syndrome

2. Are Minocin and minocycline the same thing?
   Minocycline is the generic name for the brand name Minocin -- previously made by Lederle, then Wyeth and recently sold to Triax Pharmaceuticals (and Steifel in Canada). Different versions of minocycline are available in other countries and are effective for many of the patients who post on the RBF and other bulletin boards. Some practitioners/patients opt for the pelletized, sustained release brand name (Minocin) and not the powdered generic to be assured of consistent dosing and efficacy but patients report that some generics work well. Specific generics are often mentioned on the buleltin board as being effective. Newcomers can ask other patients who are on the generics which generic versions work for them as a starting point. We have no way to establish the amount of active ingredient in the various generics and it can make this therapy ineffective if you take the wrong concentration since the dose is low. Also, the fillers and artificial additives can create problems for sensitive patients. You can consult your pharmacist or search the internet to determine which ingredients are in the medications you take. If the capsule you have contains little balls (pelletized) of the substance-- then you have the brand name Minocin which contains the active ingredient and a form of cellulose as the filler.

3. What is the brand name of the doxycycline?
   Many patients say they have good results with the brand made by Doryx but others say they do well with some generics and other brand names. Again, it is up to the patient and physician to determine which drug is one that works. Sometimes it is a matter of trial and error.

4. How do I begin?
   The place to start is with becoming informed. The more you read, the more questions you ask and the greater the support systems you enlist, the better equipped you will be to find the right physician and determine an appropriate protocol to begin the therapy.

   DO NOT go off your present medications unless there is a good reason as medically indicated. You can wean off other medications once you are feeling well and your physician can better monitor your progress. Begin slowly on the therapy if you are likely to have greater sensitivity. Have some "herx" down time available in the event you do respond with a microbial die-off reaction. Drink more water and take additional rest periods if you can. Journal about your ups and downs to keep track and use for a reference later. This could give you perspective of where you began health wise in case you forget and get impatient when improvements do not show up quickly enough.

5. What if I run into challenges?
   You can consult with experienced "AP" physicians, post on The Road Back Foundation bulletin board, email with others on the therapy and reread the inspirational stories, books and literature. Learn to trouble shoot: is your ASO (strep titer) normal, have you developed candida issues (yeast), do you have food sensitivities or digestive tract imbalances? Any of those issues can compromise the effectiveness of the therapy. You may have to consult other practitioners to help you sort it out.

6. What else should I be doing to enhance the protocol?
   The adjunctive therapies often can be looked into once you have begun the antibiotics and have been taking them for a while. Patients write about dietary changes, supplements as prescribed by knowledgeable practitioners, anti infective measures in addition to the antibiotics (often mentioned on the bulletin board), stress management and many other supportive measures. Do not do everything at once but introduce new approaches slowly, one at a time. Consult your physician first, before you add anything to your regimen.