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Diagnosed with Chronic Fatigue Syndrome or Fibromyalgia? It Could Be Lyme Disease

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Lyme disease is often called The Great Imitator because it mimics a variety of health conditions, including chronic fatigue syndrome (myalgic encephalomyelitis), fibromyalgia, and other illnesses that involve the central nervous system. It is also the fastest-growing infectious disease in the United States and possibly worldwide, with at least 300,000 new cases every year in the US alone. Some experts believe the numbers are even much higher than that.

If you think that you don’t have Lyme disease because you don’t recall ever having been bitten by a tick, think again. Most people with chronic Lyme disease actually don’t ever remember a tick bite; even fewer get the characteristic “bulls’-eye” rash that is supposed to characterize Lyme disease, and ticks aren’t the only means by which Lyme disease infections get transmitted. Research is finding that fleas, mosquitoes, biting flies, and other insects carry Lyme disease. It can also be transmitted person-to-person via sexual contact, mother’s breast milk, saliva, and blood transfusions.

When I wrote my doctor interview book, Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies, a few of the Lyme disease experts that I interviewed, such as nurse practitioner Ginger Savely, DNP, shared with me that their practices were once comprised primarily of chronic fatigue syndrome patients. But the focus of their work shifted to Lyme disease when they realized that many of their patients actually had Lyme disease as the primary cause of their symptoms! For instance, Dr. Savely discovered that nearly 80% of all of her chronic fatigue patients had Lyme disease, and this revelation changed the scope of her practice — it’s possible to have Lyme disease misdiagnosed as chronic fatigue syndrome. I have since heard similar stories from many other doctors who treat Lyme disease.

Can Lyme Disease be Mistaken for Fibromyalgia or Chronic Fatigue Syndrome?

People with chronic fatigue syndrome or fibromyalgia can have symptoms that present a clinical picture that is identical to that of a person with Lyme disease. Symptoms of all three conditions can be similar and overlap with one another. For example, people with Lyme, chronic fatigue syndrome and fibromyalgia can all battle fatigue, joint, nerve and muscle pain, cognitive dysfunction, mood disorders, digestive problems, autonomic nervous system disturbances and disordered sleep—among other symptoms. The same goes for the underlying systemic problems that these conditions cause, such as pituitary insufficiency, adrenal fatigue, thyroid problems, leaky gut, compromised detoxification mechanisms, nutritional imbalances, environmental toxicity, inflammation, and gastrointestinal and mitochondrial dysfunction—just to name a few. Can Lyme disease be mistaken for fibromyalgia or chronic fatigue syndrome? In short, the answer is yes.

Of course, everyone is unique and no two people have exactly the same symptom picture or set of underlying biochemical problems, but many people with chronic fatigue syndrome and fibromyalgia can, unbeknownst to them, have chronic Lyme disease infections as a primary cause of symptoms. At the same time, many people with Lyme disease aren’t just sick due to infections.

Challenges with Lyme Testing

In my case, I discovered a year after I became sick, in 2005, that I had Lyme disease, and the diagnosis gave me great comfort because finally—finally! I knew what was wrong with me. Or so I thought…but over time, as years of antimicrobial remedies failed to heal me, I began to look more at other causes of illness, and discovered that I had other problems, such as severe neuroendocrine dysfunction, that weren’t just caused by Lyme. My symptoms only dissipated after I began taking nutrients to support my brain and nervous system, along with my adrenals and thyroid. Conversely, I have seen people who were diagnosed with chronic fatigue syndrome, fibromyalgia or other conditions that Lyme disease mimics (such as ALS, MS and Parkinson’s) significantly or completely recover when given antibiotics, herbal remedies, ozone or other powerful antimicrobial remedies.

If you have chronic fatigue syndrome or fibromyalgia and are saying to yourself, “I was tested for Lyme disease and my results came out negative” or “I took some antimicrobials for six months or a year and I didn’t improve, so I must not have Lyme disease…” I urge you to consider how you were tested and treated, because most tests for Lyme disease are inadequate for identifying the multiple infections involved in Lyme, and Lyme disease treatment can take many months or even years. People will often do treatments for many months before they witness any improvement in their symptoms, even if the right protocol is followed.

Learn More about Lyme

It is beyond the scope of this article to describe proper methods for diagnosing and treating Lyme disease, but I encourage you to learn more by visiting ProHealth’s Lyme disease diagnosis and treatment sections. I also encourage you to check out one of the many books that are out there on Lyme disease. For instance, many people have found my doctor interview book, Insights into Lyme Disease Treatment which describes the treatment protocols of 13 Lyme-literate doctors to be helpful to them, as well as Beyond Lyme Disease, which describes some of the other factors that make people with chronic Lyme disease sick.

I’ve been interviewing integrative and holistic doctors and researching medicine for over a decade, and if there is one thing that I’ve learned about complex chronic illness, it is that diagnoses can also be confining. While they help us to understand what’s going on in the body, they can limit our perspective by keeping us from looking outside the realm of typical treatments for that diagnosis. Most doctors tend to treat according to diagnoses, rather than looking at the whole person. That means that any Lyme, chronic fatigue syndrome, or fibromyalgia symptoms or dysfunction in the body that are outside the realm of what is expected for a particular disease, condition or diagnosis, are often excluded or minimized and therefore, improperly treated. In some people, Lyme disease causes chronic fatigue syndrome or fibromyalgia. Ultimately, this means that many cases of Lyme are overlooked because doctors and patients may be looking at tests and treatments commonly used to diagnose and treat fibromyalgia and chronic fatigue syndrome, but not Lyme, and vice versa.

Labels Can be Limiting

But chronic illness is complex, and it’s prudent for all of us to be careful with labels  because labels are limiting. In today’s toxic world, people are basically sick for four reasons: infections, environmental toxins, poor nutrition, and stress (whether physical, mental, or emotional). Whatever name we give to the cocktail of stressors in the body and the problems that these cause matters less than being able to accurately identify each stressor and treat it with the right remedies and therapies.

So rather than treating according to a diagnosis, perhaps it’s more useful for us and our doctors to be looking at the inner terrain of our bodies and asking such questions as, “What needs to be removed here?” (Such as toxins and infections) “What needs to be added?” (Such as nutrients or love). “What needs to be balanced?” (Such as hormones or energy chakras). And let the diagnosis be a compass, but not the only factor upon which treatment decisions are based.

To find healing from Lyme disease, I’ve had to go beyond treating Lyme disease. If you are battling chronic fatigue syndrome or fibromyalgia symptoms, I encourage you to do the same and look into Lyme disease infections as a potential cause of symptoms, because once those infections are removed, you might be surprised at how much your symptoms improve.

The Bottom Line?

As I mentioned, Lyme disease isn’t a rare condition; it is the fastest-growing infectious disease in the United States and perhaps even worldwide. Some renowned integrative doctors believe that most people are now carriers for Lyme disease. We are all susceptible to it; not all of us will become sick from it, but some of us will. However, this doesn’t need to be a source of discouragement. Rather, it can be a source of empowerment and encouragement, especially if you battle chronic fatigue syndrome and/or fibromyalgia, because it can provide you with new answers, hope and ultimately, healing, if you happen to find that Lyme is a major part of your overall symptom picture.

This article was first published on ProHealth.com on February 21, 2016 and was updated on April 16, 2019.

Connie Strasheim is the author of multiple wellness books, including three on Lyme disease. She is also a medical copywriter, editor and healing prayer minister. Her passion is to help people with complex chronic illnesses find freedom from disease and soul-spirit sickness using whole body medicine and prayer, and she collaborates with some of the world’s best integrative doctors to do this. In addition to Lyme disease, Connie’s books focus on cancer, nutrition, detoxification and spiritual healing. You can learn more about her work at: http://conniestrasheim.org/

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3 thoughts on “Diagnosed with Chronic Fatigue Syndrome or Fibromyalgia? It Could Be Lyme Disease”

  1. LifeIsSweet says:

    It Could Be Chronic Fatigue Syndrome or Fibromyalgia.

  2. LifeIsSweet says:

    Diagnosed with Lyme Disease? It Could Be Chronic Fatigue Syndrome or Fibromyalgia.

  3. bettyg says:

    YES, i was diagnosed with both fibro/chronic fatigue and the list goes on forever for 35 years!

    but my blood was sent to a LYME DIAGNOSTIC SPECIALTY LAB, IGENEX, CALIF., who tested it and it came out CDC POSITIVE so i am counted in IOWA’S 2004 lyme statistics!!

    my late husband, jack g, was tested there too with igenex. he had MANY + but not meeting cdc/idsa’s strict criteria. so he was NOT COUNTED in iowa’s cdc lyme statistics.

    i’m trying to get that changed NOW!

    11.22.15 my late husband’s brain autopsy made WORLDWIDE HISTORY! it was the 1st to have these 2 diseases found together!!

    BORRELIA/LYME DISEASE & LEWY BODY DEMENTIA causing violent hallucinations like actor/comedian robin williams had!

    since jack was the 1st worldwide, we have written him up for 1 of the scientific medical journals reporting this find.

    I’M 1ST CO-AUTHOR, a non-medical person/spouse, over 3 medical folks involved in their blood staining found by DURAY RESEARCH ENDOWMENT FOUNDATION’s Dr. Alan MacDonald, Florida, and Paula Pierce, Norman, Okla. having her small lab, EXCALIBUR.

    it’s it its final editing by Tom Grier, Minn. to be sent to alan for his final look see before he submits it to an UNKNOWN NAMED journal to me.

    look for it in the future. a 2nd case with same diagnosis was found 1 week later from cape cod, mass!! so both will be published somewhere in future.

    i’m also trying to get his DEATH CERTIFICATE amended showing BB/lyme and lewy body dementia, and chronic kidney failure contributed to his death 2 nights are being diagnosed with cancer of r. lung/liver areas! i’m meeting resistenance so far!

    so when you have your blood tested, make sure it’s sent to a LYME DIAGNOSTIC BLOOD LAB who tests for ALL PROTEIN BANDS not just a regular blood lab. thank you all!

    thnks connie for great article!

    bettyg, iowa lyme activist

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