Even if you’re not a fan I’m betting you’ve heard, that Justin Bieber has canceled his upcoming tour due to facial paralysis. The pop star recently released a live video sharing his symptoms and his latest diagnosis of Ramsay Hunt Syndrome associated with an active varicella-zoster (VZV) infection. VZV causes shingles and chickenpox but in rare cases causes more severe illness, especially in those with a compromised immune system.

Back in January 2021, Biebs shared he’s had “a rough couple of years” in his struggles getting a diagnosis of late-stage Lyme disease and Epstein-Barr virus. JB is not alone, because according to independent studies like MyLymeData, the average Lyme disease patient takes becoming severely ill and two to five years of doctor visits before receiving a diagnosis.

Seasoned Lyme patients also commonly experience a snowball of syndrome diagnoses thrown on after a little Lyme treatment. This is super common because the CDC-sanctioned treatment protocols state that if a Lyme patient is still experiencing symptoms past the prescribed 1 to 28 days of antibiotics, then they are suffering from Post-Treatment Lyme disease syndrome (PTLDS). Interestingly, there are no studies proving that a protocol of 28 days of antibiotics is effective. This protocol also fails to consider the length of infection, any co-infections, or complications unique to each individual case of Lyme disease. (btw Lyme is the only bacterial infection I’ve ever heard of where they tell you to stop taking antibiotics before you feel better!)

After I received my arbitrary number of antibiotics for Lyme disease, doctors wanted to scan, test, poke, and prod at me weekly! Even though Lyme disease could have explained every one of my symptoms I allowed myself to be referred from one specialist to another over a long traumatic year.

Looking back, I think the only thing I was searching for was a doctor to say there’s no permanent damage, you’re going to heal from this thing! What I got instead was 15 new syndrome diagnosed with acronyms and no known cause or cure. (I was actually so frustrated at the time, it was the topic for one of my very early YouTube videos! You can watch it here.)

Like Biebs, on top of Lyme disease, I was also struggling with active viral infections which were causing severe neurological symptoms. I experienced debilitating nerve pain in my face, visual problems, memory problems, stiff neck, and a constant headache for 8 months straight. Surprisingly, more than 95% of Americans have been infected with a form of herpes virus (HHV), Epstein-Barr (EBV), and cytomegalovirus (CMV). These viruses can lay dormant and cause no symptoms at all in someone with a healthy immune system. If the immune system becomes compromised, with something like Lyme disease, then viral infections may become active and overwhelm the body.

Most conventional doctors and even many Lyme specialists overlook these common viruses. If you’ve tried every Lyme disease treatment under the sun and they haven’t eased symptoms, then it’s worth looking into antiviral testing and treatments. My case is particularly frustrating because I showed roughly a dozen doctors my off-the-charts EBV and CMV test results for 2 YEARS before someone finally prescribed antivirals!

While antiviral treatments really helped me they did have some tough side effects. I had a hard time sleeping on them and started clenching my jaw at night, to the point where I had to get a mouth guard. I was exhausted and knew I’d never heal if I couldn’t sleep! Another problem is they were only effective if I took them daily. Every time my prescription ran out all my symptoms would come flooding back in a matter of days. I incorporated antiviral herbs and foods which helped a bit, but it wasn’t until I got Lyme disease in remission that I was able to come off the antivirals completely.

Justin Bieber’s story inspired me to write this because even with all his resources he’s still struggling for proper treatment of Lyme and complications! If I could give some advice to him, and to anyone struggling now, I strongly encourage you to stay focused on supporting the immune system and healing from Lyme and co-infections. Do not accept new syndrome diagnoses with no known cause as some chronic and incurable label. You must take radical responsibility for your health. Look at every single test result yourself, and ask your doctor specific questions. Like why is this value so high/low, could this be causing some of my symptoms? (Don’t even get me started on how long it took for a doctor to figure out I was anemic!)

Lyme affects each person differently, everyone reacts differently to each treatment and heals in their own time. For me, recovering from Lyme has taken tenacity, learning to follow my intuition, and a ton of patience. I am not a medical doctor, and I do not claim to treat, cure, or prevent any illness. There is no one-size-fits-all protocol for healing from Lyme disease. But what I have learned from my own journey, and from mentoring others I crammed into a well-researched book, The Lyme Ease Survival Guidebook. Much of the information for this post comes directly from my book, along with the sources linked throughout.

Keep healing, and remember to stay focused!

*edited for clarity 06/29/22

Lyme & A Side of Syndromes: What Justin Bieber and I have in common

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