Why should people with ME/CFS, fibromyalgia, and other chronic illnesses care about Lyme disease and other tick infections? Because these infections are often behind the scenes in a wide variety of diseases and often go undiagnosed. In fact, Lyme disease is one of a dozen or so infections that have been identified as a trigger for ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), meaning that 10% of the people who get Lyme disease will develop ME/CFS (and their underlying infection(s) may never even be diagnosed). And Lyme disease is often called The Great Pretender because it is often misdiagnosed as so many other disease--and there are over a dozen other tick infections that can cause even worse issues. It's important--and urgent--to find out whether you have tick infections behind the scenes because when left untreated, they can cause permanent neurological damage. This is even more urgent (and likely) if you have any kind of joint pain or any sort of neurological symptoms.
Information for Those with ME/CFS, Fibro, and Other Similar Illnesses
It's not just that people are often misdiagnosed with MS, Parkinson's, fibromyalgia, and ME/CFS when they really have tick infections, but also that tick infections can be behind the scenes of any of these diseases (and more), making things worse. And, as I explained in the introduction, Lyme disease is a known trigger for ME/CFS, though the underlying infection may have never been accurately diagnosed (and that's like true for other tick infections, as well). Many, many people--including my son and I--have ME/CFS and also have tick infections (and same for fibro). In our cases, we had ME/CFS first and later got the tick infections, but the immune dysfunction of ME/CFS prevents us from fully getting rid of the infections (that's not necessarily true for everyone).
In my blog post, Why Everyone With ME/CFS Should Be Evaluated for Tick Infections, I explain the many connections between tick infections and ME/CFS or fibromyalgia, plus details on symptoms, other tick infections, testing (and why it's not 100% reliable), treatments, and how to find a doctor near you. That post also include lots of links to additional information (and there are more resources and recent articles linked below). It also explains why a negative Lyme test doesn't mean you don't have Lyme.
If there are undiagnosed infections of any kind behind the scenes (which is very common), ME/CFS and/or fibromyalgia will continue to worsen and other treatments may not work until you address those infections. So, if you have tried various ME/CFS treatments, like correcting sleep dysfunction, treating OI, or improving immune dysfunction, and nothing seems to help you, you almost certainly have some sort of infections behind the scenes, and tick infections are one possibility to explore.
This post, Lyme Disease News: Testing and Treatment includes some newer developments in the field of testing for and treating Lyme disease that have improved things for me.
For those going through treatment of tick infections and experiencing a Herx reaction (i.e. characteristic worsening), my blog post Managing Herx Reactions explains what a Herx reaction is (it can also happen when treating other underlying infections like reactivated EBV and other herpes-family viruses), and lots of treatment options and other ways to help manage it and get through to the other side, when things start improving.
For more on our own experiences (I have Lyme and my son has/had three tick infections), check out my video, Our Chronic Illness Story: ME/CFS and Lyme (watch on YouTube at the link or I'll include it below):
In this video from 2021, ME/CFS and Lyme: Tests, Treatments, and Improvement!, I review a recent relapse and what helped me to recover. Renewed treatment for my underlying Lyme disease was a part of that. You can watch on YouTube at the link or I'll include it below:
I also wrote a blog post about the same information, if you prefer to read rather than watch.
General Information on Lyme Disease and Other Tick Infections
Just last week, I read this article in the New York Times, The Tick Situation Is Getting Worse. Here's How to Protect Yourself. It features surprisingly accurate and up-to-date details (that's not always the case in mainstream media) on how fast various types of ticks and tick infections are spreading to new places where they didn't exist before. The old ideas that Lyme disease only occurs in certain states and countries is no longer true (if it ever was). Ticks and tick infections are present--and growing--in every state and on every continent in the world (except Antarctica). The article focuses on prevention and avoiding tick bites and infections and some symptoms to watch for.
Back in 2017, I wrote an article for the ThirdAge website, 7 Things You Probably Don't Know About Lyme Disease. This article is still accurate, and it covers many common myths about Lyme disease and other tick infections with respect to symptoms, diagnosis, treatment, and the effects of these infections.
Two excellent expert resources that I linked to in that article include:
- Igenex, the top testing laboratory for the latest and best tests, provides a lot of great information on their website, including Frequently Asked Questions about various tick infections and a Symptom Checker. They also have a great set of resources for Finding a Tick Infection Specialist Near You.
- Lyme Disease.org - This patient-powered website has loads of helpful information, like their Symptom Checklist that takes you step by step through a series of questions. Or click on Lyme Basics from the homepage for a long list of options for more information. They also offer detailed information on Lyme co-infections (all the other tick infections that the NYT article said are becoming more prevalent).
I hope you find this information helpful.
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