Friday, December 21, 2018
Lyme Update & Lyme Book Review
Since I believe a recurrence of my Lyme Disease triggered this particular crash (it was a mystery at first because I almost never crash for any reason anymore!), I have been focused on tick infections and recently read an excellent book on Lyme that I wanted to share with you. And if you think tick infections don't apply to you, then start with this blog post on why everyone with ME/CFS or FM should at least look into tick infections (and why testing is not reliable). First a quick family update.
Lyme Update - Our Story (Briefly)
So, for those of you new to my blog, here's a quick recap. I got ME/CFS almost 17 years ago, on March 2, 2002. Both of my sons also got ME/CFS about two years after that. We began the long process of trying treatments and found some that helped (see my Effective Treatments for ME/CFS post), but then I had sudden-onset knee pain and nausea. Since we live where tick infections are rampant (though that is almost everywhere now), I knew immediately I had Lyme disease. Long story short: I started on a 3+ year marathon of treatment. The immune dysfunction of my ME/CFS made it more difficult to get rid of, but I was finally Lyme symptom-free. A few years later, the knee pain started up again, and I thought I had a new Lyme infection, so treated it again. A few years later, it popped up again, and I finally realized it was never gone, just in remission. It recurred about every 3-4 years, including about mid-October this year, when this severe crash began. It took me a while to realize it was Lyme that triggered the crash because this time, the knee pain didn't start right away, though my right eyelid was twitching - weird, I know, but neurological symptoms are common with Lyme.
My older son's story is far more complex. He became ill with ME/CFS, with symptoms almost identical to my own, in summer 2004. Again, treatments (especially treating OI) were helping him & he was doing well, back to school, back in band, and even playing a little soccer again, when he suddenly got worse. Again, knee pain was a clue, and - luckily for him - he tested positive to Lyme (only about 65% who have it test positive). So, we treated his Lyme, but he never quite returned to that good baseline he'd been at before it. Over the next three years, he got worse and worse until he was almost completely incapacitated. We were chalking it up to "just" ME/CFS. At that point, some unique symptoms finally made us realize he had bartonella, another tick infection, so we took him to our Lyme doctor, who confirmed he had bartonella, Lyme, and babesia (another common infection carried by ticks) - he'd probably had all three infections for 3+ years, but our pediatrician only knew to test for Lyme. To make a very long and complicated story short, that was about 8 years ago, and our son has been undergoing treatment for the 3 tick infections since then, first with antibiotics and other meds (babesia isn't a bacteria) and later with an herbal protocol, as well as treating his ME/CFS. He has made very slow progress but has improved, bit by bit. He just graduated from college this summer!
New Lyme Book
So, fast-forward to this fall. I bought a new book on Lyme Disease, The Lyme Solution: A 5-Part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme Disease by Darin Ingels, ND, FAAEM, and my long crash gave me plenty of time to read it. You can read my full and detailed review of the book on my book blog. Despite over 10+ years of experience with Lyme, I still learned some new things from this book. Most importantly, the author compares various herbal protocols and says that the one we have used for years is often too potent for many people and has the tendency to cause severe Herx reactions (a characteristic worsening that occurs when you treat tick infections or other underlying infections like viruses). That has been my son's experience exactly! A normal dose of the formula he takes is 30 drops a day. After 4 years on it, he can still only tolerate 1 drop a day. So, I was very interested to read that another protocol tends to be gentler and less likely to cause such a severe response.
As a result, we talked to our Lyme doctor (LLMD) and got the OK to try this other protocol, the Zhang protocol, which is based on Chinese herbs. It's only been 3-4 weeks so far for both of us, and we are still Herxing, so we are taking it much more slowly than the author of the book recommends, but I am hopeful. Our son was kind of "stuck" and seemed to not be improving as much anymore and couldn't seem to increase his tiny dose. As for me, well, my Lyme does go into remission, but then it keeps popping up again to wreak havoc every 3-4 years. So, I am hoping this new protocol will help to get rid of my Lyme and help our son to get to the next level of functioning so that he can manage a job and adult life. I'll let you know how it goes!
Bottom line is that this book, while not perfect, was informative, and I do recommend it for anyone dealing with tick infections (or who even thinks there is a possibility of tick infections - it covers the challenges of getting diagnosed, too).
And if you are thinking that none of this applies to you, then I urge you to at least read my blog post, Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections. We knew all about Lyme disease, yet we still missed 3 tick infections in our son for more than 3 years. Testing is not reliable, and the urgency in at least ruling out tick infections is that they can cause permanent neurological damage when left untreated. This is serious stuff, and the consequences of missing it can be serious and permanent. And, if you, too - like us - are struggling with Herx reactions while treating tick infections or other underlying infections in ME/CFS, then check out my post on Managing Herx Reactions (more of our hard-won experience!).
So, that's us these days - trying something new for tick infections while keeping up all our usual treatments for ME/CFS. I am still nowhere close to my normal baseline for the past few years (which was pretty good!), but I am at least sitting up more now & getting out of the house a bit.
Here's to a healthier 2019 for all of us!
You can purchase The Lyme Solution from Amazon in print, e-book, or audio: