Thursday, February 08, 2018

Throwback Thursday: Lyme Disease & Other Tick Infections

Dozens of times each week, I get asked about Lyme disease and whether people with ME/CFS should get tested for it, so it seemed like a good topic for Throwback Thursday.

Just the title of this post I wrote in 2014 answers that question:

Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections.

The reasons why everyone with our diseases should also be evaluated for tick infections (including Lyme disease) are explained in detail in that post, but the bottom line is that these infections are often behind the scenes in ME/CFS or fibromyalgia, and it can be almost impossible for a patient or an inexperienced doctor to tell them apart. What makes getting evaluated for tick infections urgent is that when they are left untreated, they can cause permanent neurological damage. This essay by best-selling author Amy Tan tells about her horrible experiences with Lyme disease that have left her with lingering epilepsy, even after years of treatments. If you have joint pain, headaches, light sensitivity, nausea, or any neurological symptoms at all, it is even more urgent that you get evaluated immediately.

That post also explains why there are no reliable blood tests for Lyme, due to the nature of the Lyme bacteria (it doesn’t stay in the bloodstream) & the fact that many people – especially those with immune disorders like ME/CFS – don’t make the antibodies. The best blood tests only catch about 65% of cases. So, if you get a positive blood test result, you definitely have Lyme, but a negative blood test result doesn’t tell you anything. In addition, Lyme is only one of a dozen common tick infections, and most doctors only test for Lyme. The only way to know for sure if you have tick infections (including Lyme) is to see a Lyme specialist or LLMD who will run the best tests available but will also look at symptoms, history, and physical exam to determine if tick infections are present and which ones – any single positive test result for ANY of the tick infections means you were definitely bit by an infected tick (most people don't remember a bite), then the doctor can figure out which ones based on his or her experience (that’s why you need to see an LLMD). Use the tips and resources at this link to find an LLMD near you.

One you find out that you DO have Lyme or other tick infections, you again need a Lyme specialist or LLMD to get proper treatment. Do not rely on a non-LLMD because it can do more harm than good. We found that out the hard way. Our pediatrician diagnosed our son's Lyme disease (he was one of the lucky 65% to have a positive blood test) and treated him with one month of antibiotics. The problem was that he also had two other tick infections that she didn't know to look for. In fact, no one even mentioned the possibility of other tick infections to us, until more than 3 years later when I learned about them from other patients. By then, our son was almost bed-ridden. We took him to an LLMD and found out that he also had bartonella and babesia, two other tick infections, and still had Lyme because you can't get rid of it without also treating the co-infections.
Treating tick infections, especially in the presence of an immune disorder like ME/CFS, is very complicated, so you need an expert to guide you. The various tick infections all require different kinds of treatment - some are not even bacteria!

During treatment, you will likely get worse. This is actually a good thing, a sign that the treatment is working and killing off the culprits. Those dead bugs then flood into your bloodstream, causing a worsening of all symptoms that is known as a Herx reaction. Too many people stop treatment when they get worse, but then those infections are still in your system, doing damage. Instead, there are many, many ways to manage a Herx reaction - the key is to find a balance where you can tolerate the treatment and still function, but you are continuing to make progress against the infections. This blog post explains more about Herx reactions (they also occur when treating viruses with antivirals) and lots of ways to manage them.

Very often, treatment of tick infections includes antibiotics which can then cause yeast overgrowth, a problem that those with ME/CFS are even more susceptible to because of our immune problems. Yeast overgrowth by itself can cause severe symptoms, including sore throat, exhaustion, flu-like aches, and severe cognitive dysfunction/brain fog. This post explains how to treat yeast overgrowth.

Don't let the possibility of yeast overgrowth scare you off from treating tick infections. Antibiotics are not the only treatments used against Lyme, bartonella, and other bacterial tick infections. There are several all-herbal protocols available (your LLMD can tell you more about them). My son switched to the Byron White herbal protocol four years ago, and it has been surprisingly potent and very effective.

Finally, most of the treatments that can help those with ME/CFS will also help those fighting tick infections - things like improving methylation (crucial for those with infections), improving immune function, treating Orthostatic Intolerance, and correcting sleep dysfunction. All of these topics and more are covered in this post on Effective Treatments for ME/CFS.

Don't let the complexities of diagnosing and treating tick infections scare you off. If you have these infections behind the scenes in your body, you will continue to worsen over time, possibly ending up with permanent neurological damage. With treatment, you will see significant improvements over time. My son was almost bed-ridden in high school. Now, 7 years into treatment for his 3 tick infections, he is living on his own, finishing college this semester, working part-time, in the sailing club, and even plays sports. He still has ME/CFS, but treating those infections has provided significant improvement, little by little. He is living an almost-normal life now and hopes to work full-time after graduation. It's been a long and difficult process, but seeing him so much improved makes it all worthwhile.

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