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Treating Herx Reactions or Die-Off - Helping Your Body to Detox
This post, Managing a Herx Reaction, provides more detailed information about Herx reactions and summarizes our own experiences in treating my son's Herx reactions (mine with both Lyme and antivirals were short-lived and not too severe). That post includes a long list of recommendations from many sources, including our Lyme doctor and our brilliant dietician/biochemist, that have worked well for our son. I just updated it today.
Last week, I read this blog post at Recovering Kids blog called DETOX the die-off and feel amazing again! (our roadmap to success), which includes even more information about Herx reactions, some of which I had never heard before. So, I can't vouch for everything listed there, but I wanted to share the post because it provides a lot of detailed suggestions. We will definitely be trying some of them.
Treating Underlying Infections
Finally, if you have no idea what I am talking about and have not yet looked into treating underlying infections yourself, I highly encourage you to do that because it often results in significant improvements for those with ME/CFS and sometimes even complete recovery. In fact, for patients who have tried other treatments and nothing seems to help, there are almost always infections behind the scenes preventing them from improving. Treat the infections, and everything gets much better!
The immune dysfunction in ME/CFS causes old viral infections to become reactivated and makes us especially prone to bacterial infections, so treating underlying infections often yields dramatic improvements. For many with ME/CFS, that means reactivated viruses that remain dormant in healthy people - things like Epstein-Barr virus that causes mono or another herpes-family virus called HHV-6 or CMV or various types of enteroviruses (that cause stomach symptoms in healthy people but can linger and remain activated in ME/CFS). This is a treatment pathway that often requires going to see one of the few ME/CFS experts, but is well worth the trouble because it can lead to significant improvement and sometimes even recovery. This blog post summarizes my own improvement after taking antivirals - my virus levels were fairly low (but positive) so my gains were correspondingly small-ish but still important, most critically, an increase in activity level and in mental clarity.
The other kind of infections that ME/CFS patients should look for and treat are the various types of tick infections (Lyme disease is one of those). Tick infections are very widespread now, occurring in every US state and on every continent except Antarctica. Our immune dysfunction puts us at even greater risk than everyone else. Blood tests are not very helpful in diagnosing Lyme and other tick infections - the very best tests for Lyme only detect it about 60% of the time and doctors rarely test for any other tick infections. So, if you have had a negative test for Lyme before, that tells you nothing, since it is so prone to false negatives (you can believe a positive result). We learned all of this the hard way. Our son got sicker and sicker over the course of 3+ years while we chalked it up to "just" ME/CFS. We finally took him to a Lyme specialist (the only way to find out for sure) and found that he had 3 different tick infections! With treatment, he has gone from mostly bedridden to attending college, working part-time, and living on his own. So, this blog post explains all the details of Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections (including how to find a Lyme specialist near you).
Another common outcome of our immune dysfunction is Yeast Overgrowth. This is both due to the specific type of immune dysfunction common in ME/CFS and the fact that many of us need frequent antibiotics (due to recurrent bacterial infections). Yeast overgrowth is often a silent and stealthy factor in our illness - many people (myself included) don't realize it is an issue until they start to treat it and see how much better they feel. Keeping yeast overgrowth under control (that blog post lists many different approaches) helps my son and I both to feel less fatigued, less achy, and have significantly improved mental clarity (i.e. less brain fog).
So, now when you pursue treatment for your underlying infections, you will also know how to deal with any resultant Herx or die-off reaction!
What has worked best for you and your family for Herx reactions/detox?