Information for people new to using antibiotic therapy in the context of rheumatic disease

Arriving at this site without having read anything about "AP" (Antibiotic Protocol) can be overwhelming. So, these are suggestions newcomers might consider:

1. Include in your reading, the book/books The New Arthritis Breakthrough and/or Scleroderma, The Proven Therapy That Can Save Your Life by Henry Scammell. They will inform you of the history, mechanism and successes of AP. The books can be ordered at Amazon.com right through this site. (Click on "Recommended Reading" under "Education" in menu).

2. Read over the material on this site. Many of your general questions will be answered here. Reading through this site is going to take a long time but you will be glad you did. Print the studies and other literature that you think are important to share with your physician. More will be added to the web site as the information is provided.

3. Finding an experienced physician who can prescribe and monitor AP is often a great challenge. We strongly suggest that you read the literature and learn as much as you can about antibiotic treatment before you see a physician specializing in AP. To locate physicians who treat with AP, send an email to apdoctors@roadback.org, and a volunteer resource person will email you directly with suggestions of physicians for you to explore in your geographical area -- to see if they match your needs. Some chose to travel greater distances to AP practitioners who have used antibiotic therapy regularly over many years and if that is what you wish, be sure to mention that you are willing to travel. Include information regarding your diagnosis in the email. Also, to contact volunteers in your region who are part of an AP resource network who can provide additional support, look under the COMMUNITY drop down menu and click CONTACT US. Then, click the peer-to-peer link on that page (Antibiotic Protocol Network Contacts).

4. Read all the tips for getting started under NEWCOMERS in the EDUCATION area. It can really make a difference in the success of these protocols. Understand why patients tell us that some generics of minocycline do not work as well and why the brand name is often suggested. Learn about other antibiotic options within the tetracycline family or in other drug families if that is necessary. That info is on this site and in the books. Consider learning if you have a positive strep titre ( by having an ASO blood test) because that can affect your progress. You may need another antibiotic until it goes down to normal. An experienced AP doctor will help you with that, or your local physician can be consulted for guidance.

5. Once you understand the process, you really need a lot of patience. Read our posts, reread the books and just keep learning along the way. Please post on our bulletin board, too. We want to welcome you to our Road Back community. Click on the BULLETIN BOARD discussion forum (Community) or thumb tack icon on left of page for access.

This therapy is not a cure; it is, however, a highly effective treatment. Response varies and is affected by many factors: the strength of your immune system, what your previous medications have been, what medications you might still be using, how long you have had your disease, how severe it is, etc. Some people see almost instant improvement, others get worse before they get better (a response called a Jarisch-Herxheimer reaction). Usually improvement is slow and gradual, often even subtle, but eventual remissions are not uncommon with antibiotic therapy.

6. There are complementary steps to consider once you have gotten into the AP regimen. These measures can increase the effectiveness of the AP. They are sometimes mentioned on the bulletin board discussion forum and some are posted on this web site. But-- don't try to do everything at once and be sure you have your physician's approval for any new modality or changes. This is a commitment to better health and you have to do it in increments. You did not get sick overnight.

7. We have included the HISTORICAL PROTOCOL and a CURRENT PROTOCOL REVIEW (based on NIH clinical trials using Minocycline in Rheumatoid Arthritis -- MIRA) on this site for educational purposes. They are in the STUDIES dropdown of the main menu. The protocol is an example of an approach to antibiotic therapy that has been widely used over time.

8. Follow through on other links that are listed at the left and below this text on this page and elsewhere on this site. You will see the common thread of information and the success stories of others (TESTIMONIALS link on left of page). You will begin to understand that this therapy is a real option that works! If your present practitioner disagrees and AP is a choice that seems right for you, there are physicians available to contact who do administer antibiotic therapy.

9. If you would like to receive RBF's periodic e-bulletin with Foundation updates and issues of interest regarding antibiotic therapy, sign up on the e-mailing list on our home page. RBF will not share your email address and you can unsuscribe whenever you wish by clicking the link provided on every e-bulletin.