The Name Matters:Lyme, Fibromyalgia, or Chronic Fatigue Syndrome

Is It Lyme Disease, Fibromyalgia, or Chronic Fatigue Syndrome Image


Many people with Lyme disease are incorrectly diagnosed as having fibromyalgia or chronic fatigue syndrome. In my Seattle practice, before I became a Lyme disease physician, my main focus was treating fibromyalgia and chronic fatigue syndrome. In 2004 one of my patients asked for Lyme disease testing. Her pcr test for Lyme came back positive. This got me thinking that others in my practice could have Lyme disease too. So I tested everyone in my practice for Lyme that had a diagnosis of fibromyalgia and/or chronic fatigue syndrome. I discovered that 30 percent of my patients actually had Lyme disease causing their problems.

Video Thumbnail

To listen to video https://www.treatlyme.net/guide/lyme-fibromyalgia-chronic-fatigue-syndrome

Disease Semantics and Naming

Chronic fatigue syndrome and fibromyalgia are diagnosed when no other cause of fatigue or muscle achiness can be found. They are both a diagnosis of exclusion. This means we exclude any other causes of these problems.

If someone actually has Lyme disease causing muscle pains or fatigue, then it is no longer correct to say they have fibromyalgia or chronic fatigue syndrome. They actually have Lyme disease causing muscle aches or severe fatigue and all the other symptoms associated with these two diagnoses.

Patient Beware

Be aware the current trend in medicine is to label fibromyalgia or chronic fatigue associated with an infection as post-infection chronic fatigue syndrome or post-infection fibromyalgia. Physicians use this term to imply that an initial infection triggered the health problem – but the infection is no longer active and causing the problem.

While this can be true with many infections, Lyme disease infection can persist and lead to ongoing health problems. Thus, it is wrong to call people with active Lyme infection as having post-infection chronic fatigue or fibromyalgia. They actually may have an active infection leading to health problems. These patients actually have chronic Lyme disease.

How to Tell You Have Chronic Lyme Disease

First, you should know 50 percent of people with chronic Lyme do not remember a tick bite. And at least 30 percent of people do not remember the classic bullseye rash. So it is very important to get proper testing.

But testing is extremely complicated. The standard way most physicians test for Lyme is to perform a two-step test method involving an elisa test. If the elisa is positive, then another test called a western blot is performed to determine if the elisa is correct. But here is the problem, studies show that nearly 50 percent of elisa testing will miss Lyme disease when someone has it.

In my practice, I use a test by IGenex called the Immunoblot. This test looks to see if a person has antibodies against eight kinds of Lyme bacteria. According to IGenex validation studies, this method can find Lyme when it is present 95 percent of the time. For more information about Lyme testing and this specific method read A Review of Lyme Infection Tests: Pass or Fail.

Making a diagnosis of Lyme disease is complicated. It is possible to diagnose Lyme disease, even when testing is negative. For more information about how to diagnose Lyme disease especially when testing is negative see How to Diagnose Chronic Lyme Disease, More Than A Test.

A Few Words About Lyme Disease Treatment

If you discover you have Lyme instead of fibromyalgia or chronic fatigue syndrome this means you have a great chance to improve your health. As you consider your treatment options, be aware recovering from Lyme requires more than antibiotics. To recover most people have to address additional imbalances and health assaults that contribute to the illness. For a list of possible things you should address see What is Lyme Disease? A Mess of Things. In The Ross Lyme Support Protocol, I lay out a full treatment approach that addresses the most important issues to improve your health.

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9 comments

  1. I was once a candidate for Lyme testing because I have a chronic pain issue… like basically arthritic but all my bloodwork for arthritis issues came back clean and I backed out of the Lyme test cause I was uninsured then.
    Not sure that’s my issue and my doctor has not brought it up

    Liked by 2 people

    1. Most doctor don’t think to consider Lyme. If you’re still having problems I would ask to get tested. One thing to keep in mind about testing is doctors only test for a few strains not all strains and there is a high false negative on the test. I was almost dying from Lyme and I didn’t once test positive for Lyme. I have since tested positive for one strain. If your very sick or in a great deal of pain, try a Rheumatologist. There could be many other illnesses going on that cause pain that a general doctor is not the right person to diagnose. Have a great day.

      Liked by 1 person

      1. I was thinking the same thing with the Rheumatologist… but if you show no traces of rheumatoid markers in your blood they won’t prioritize you as an incoming patient down here, and it can take months to get in. My doctor wants me to see a chiropractor, which I’m mixed on

        Liked by 1 person

        1. I would get in line to see a Rheumatologist and go see a Chiro now if you can. I love Chiro’s and they do a great job for some types of pain. Until they see you they don’t know if your pain is something they can work out. But I would press on with the specialist even without markers because you could have another immune disorder that a Rheumatologist would diagnose.

          Liked by 1 person

  2. I think lime is more common in the US, is it? Or am I mistaken? Its not really spoken of here, but we do have woods and stuff where ticks are, I’m a city girl though so I’m not often out in the woods. i’d hate to get lime!

    Liked by 1 person

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