Lingering Questions About Lyme Disease

Lingering Questions About Lyme Disease
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I felt vindicated last year when researchers reported Lyme disease could potentially trigger sarcoidosis. I’ve been trying to get physicians to see a link between the two for years. I used to expect some dramatic “aha” moment when I reported that my sarcoidosis arrived a year after my Lyme disease. Instead, it’s just dutifully recorded into their notes and dismissed as being irrelevant. 

May is National Lyme Disease Awareness Month in the U.S. The physicians I’ve encountered consider my Lyme disease a closed chapter, but I still have questions. I hope researchers further explore the connections between the two diseases that changed my life.  

Many of the problems I experienced with Lyme disease re-emerged with sarcoidosis, such as debilitating fatigue, achy joints, and brain fog. Numerous other symptoms arrived later, such as numbness, tingling, and postural orthostatic tachycardia syndrome — all of which can result from either sarcoidosis or Lyme disease. That makes me question whether Lyme disease is more than just a trigger for sarcoidosis and what role, if any, it continues to play in my ongoing symptoms. 

Merging health battles

I never had the telltale bullseye rash associated with Lyme disease infection, so it took weeks to find a physician who thought the stiffness spreading through my joints, after canoeing in New Jersey, warranted testing. After receiving positive results and other causes were ruled out, I was prescribed antibiotics. It took three courses of doxycycline and two months of sick leave before I rebounded.

I thought that was the end of it, but a year later many symptoms continued popping up (migraines, fatigue, and joint pain). A nagging cough led me to my sarcoidosis diagnosis. That was the beginning of what would become a very convoluted health battle that has left me with more questions than answers. 

I’ve been unable to get physicians to consider any connection to my 2001 tick infection and my health problems today. The study “Controversies in Persistent (Chronic) Lyme Disease,” published in the Journal of Infusion Nursing in 2016, highlights the many reasons why. But, pain and fatigue persist in many with sarcoidosis, even in clinical remission. In my case, I wonder if my past Lyme disease is the reason.

Borrelia burgdorferi is the bacterium that causes Lyme disease. In 1992, a study of 33 people with confirmed sarcoidosis concluded Borrelia burgdorferi infection can cause sarcoidosis and that sarcoidosis might be a type of Lyme disease. A 2018 paper also theorizes that Borrelia burgdorferi could act as a trigger for sarcoidosis. I hope this is explored on a much wider scale in the future, if it hasn’t been already.

I’ve had to accept a lot of new normals with sarcoidosis. For me, the nagging question remains whether doctors should be focusing on my history of Lyme disease, too. Is it possible it wasn’t fully eradicated? Could the antibodies from it be fueling my sarcoidosis? Could my many symptoms, which persist despite rounds of steroids, be banished by a course of intravenous antibiotics?

Physicians could be right. Maybe Lyme disease has no bearing on my current health. But, there are a lot of unknowns when it comes to sarcoidosis. I hope research will one day settle the many questions in the back of my mind about connections between the two diseases. 

Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.

  • Sarcoidosis/COVID-19 impact: A questionnaire aimed at gauging the impact of COVID-19 in the sarcoidosis community has already received more than 1,600 responses from those with the rare disease. So far, 31 reported having COVID-19. None of those 31 needed mechanical ventilation and most were treated at home.  The Foundation for Sarcoidosis Research and University of Cincinnati study is ongoing. To learn more or to participate click here.
  • Good karma: Native American relief to the Irish during the great potato famine in 1847 has not been forgotten according to Time Magazine, which reported the Irish are donating heavily to a GoFundMe campaign to help the Navajo community now severely affected by COVID-19. 
  • Guilt-free binge: The Verge reported this month on eight sites for online courses, many of which are free. Binge away!

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.

Athena, a former journalist and Pennsylvania native, was diagnosed with sarcoidosis in 2002. She’s admittedly addicted to books, Marvel, and football. She tackles life with humor, passion and curiosity, and hopes to reach others through her writing.
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Athena, a former journalist and Pennsylvania native, was diagnosed with sarcoidosis in 2002. She’s admittedly addicted to books, Marvel, and football. She tackles life with humor, passion and curiosity, and hopes to reach others through her writing.
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4 comments

  1. Lon Hale says:

    I too was diagnosed with Lymes then later found elevated ACE levels leading to diagnosis of Sarcoidosis. Neurologist also ordered spinal tap to check for Neurolymes and again found elevated ACE levels but no Lymes positive in spinal fluid.
    Diagnosis Lymes positive and Sarcoidosis with no further testing or answers.

    • Athena Merritt says:

      Thank you for reaching out! It’s great to hear from someone else that went through the same. Hopefully this connection gets explored more thoroughly in the future.

  2. Stef says:

    Yes, 100% if you’ve had Lyme in the past it can rear its ugly head again! All of these mystery diseases with no known cause or cure (Sarcoidosis, ALS, MS, Parkinson’s, Fibromyalgia, Rheumatoid Arthritis, Lupus, Sjogrens, etc.) are rooted in infection! The conventional medical community simply gives one of the above names based on the particular set of symptoms (amongst which there is a lot of overlap.) The culprit is usually Lyme, but there are others or often co-infections. For proper testing and treatment you need an LLMD (Lyme Literate Medical Doctor.) Go to ILADS.org, register for free and do a provider search in your area. Whatever you have to pay… it’s worth it! Prayers, Stef

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