When the Road Back Gets Bumpy

We don't all find ourselves on the same road back. Some of us take the scenic route and we do well with an antibiotic protocol (AP) almost right away. After mild (or possibly no) discomfort, our disease begins to respond. There may be some bumps and problem-solving needed along the way-- but basically we see early and continued improvement and feel optimistic.

Then, there are those who end up on another road back-- the one with the detours and rough terrain. The antibiotic begins its work within a few hours or days and a difficult ride ensues. Our body is responding to the dying microbes and their toxins that are being released from tissue. This is what is recognized as the "Jarisch Herxheimer reaction," or what roadbackers have come to call the "herx." And the "herx" makes it rough for some rheumatic patients to stay on the therapy in the beginning of treatment.

We may see many of the symptoms of our disease presenting along the way...the proverbial peeling-the-onion phenomenon. Some travel territory they never saw before. "I have pain in places I never knew I had places," stated one patient on antibiotic protocol. These are often the patients with intense inflammatory symptoms and/or long-term disease and a history of many failed medical therapies. So, they have to tighten their seatbelt and find a way to get through the rough spots. Some are on that road for only a few months while others find themselves meandering in and out of difficult situations for a year or two. It requires real determination to address the obstacles they encounter. And, it requires faith in one's decision to go on the therapy.

So-- how do you get through it?

First, you have to do your homework and understand the process. It would be prudent to read the books and literature recommended, as well as visit the website (www.roadback.org) which has many helpful articles and tips for newcomers to AP. Then, communicate with other patients on the therapy (at chats, via the bulletin board, email or with a phone call) and finally make up your mind regarding which direction you want to take. If you are having a particularly difficult time when beginning the protocol, do a little trouble shooting with your physician. Once the appropriate antibiotic for your situation is determined, you may consider asking these questions:

1. Is the starting dose too high or too frequent?

2. Do I need to give my body a short rest from the antibiotic (a "washout") for a few days so the Jarisch Herxheimer reaction lessens?

3. Do I have another infection that has surfaced (such as strep, or systemic yeast)?

After you and your physician have explored the ways to "tweak" the therapy so it is tailored for you, look at the other facets of your life that you can adjust to make the early stages of AP easier. With professional guidance, you could perhaps begin a healthier diet (use fewer processed foods and determine food sensitivities) or you might need to drink more water to flush your system of toxins. Be sure your GI tract has been kept in balance by consuming "healthy bacteria" such as acidophilus in active yogurt or in good quality supplements. You may have to pare down your commitments for a while so you decrease stress and give your body time to rest. You need to take care of yourself during the time that you wait for the antibiotic to "kick in" and for your body to stabilize. That could be months or in some cases much longer-- such as a year or more. But -- you will be seeing some positive changes along the way once the early stages of the therapy and the intense "herx" have passed.

When the journey has become difficult, reflect on what you have learned, heard and embraced when you began. "We have to believe it before we can achieve it! This applies to anything in life," writes one roadbacker. Work with informed practitioners to make the therapy more easily tolerated, getting the medical and psychological support you need. No one guaranteed it was going to be easy, but all say it is worth it. One patient wrote: "I feel like I went 'from rags to riches." Now, that is one trip you don't want to miss!