Is It Lyme, Fibromyalgia, or Chronic Fatigue Syndrome?

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

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

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.

 
 
 
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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 Physicians use this term to imply that an initial infection triggered the health problem - but the infection is no longer active and causing the problem.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.

Disclaimer

The ideas and recommendations on this website and in this article are for informational purposes only. For more information about this, see the sitewide Terms & Conditions.

References

View Citations

  1. Buskila D, Atzeni F, Sarzi-Puttini P. Etiology of fibromyalgia: the possible role of infection and vaccination. Autoimmun Rev. 2008;8(1):41-43. doi:10.1016/j.autrev.2008.07.023 (View)
  2. Horowitz RI, Freeman PR. Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2. Healthcare (Basel). 2018;6(4):129. Published 2018 Nov 5. doi:10.3390/healthcare6040129 (View)
  3. Horowitz R.I., Freeman P.R. The use of dapsone as a novel “persister” drug in the treatment of chronic Lyme disease/post treatment Lyme disease syndrome. J. Clin. Exp. Dermatol. Res. 2016;7:345. doi: 10.4172/2155-9554.1000345.
  4. Horowitz RI, Freeman PR. Precision medicine: retrospective chart review and data analysis of 200 patients on dapsone combination therapy for chronic Lyme disease/post-treatment Lyme disease syndrome: part 1. Int J Gen Med. 2019;12:101-119. Published 2019 Feb 18. doi:10.2147/IJGM.S193608 (View)
  5. Melenotte C, Drancourt M, Gorvel JP, Mège JL, Raoult D. Post-bacterial infection chronic fatigue syndrome is not a latent infection. Med Mal Infect. 2019;49(2):140-149. doi:10.1016/j.medmal.2019.01.006 (View)
  6. Ranque-Garnier S, Eldin C, Sault C, Raoult D, Donnet A. Management of patients presenting with generalized musculoskeletal pain and a suspicion of Lyme disease. Med Mal Infect. 2019;49(2):157-166. doi:10.1016/j.medmal.2019.01.008 (View)

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About the Author

Marty Ross, MD is a passionate Lyme disease educator and clinical expert. He helps Lyme sufferers and their physicians see what really works based on his review of the science and extensive real-world experience. Dr. Ross is licensed to practice medicine in Washington State where he has treated thousands of Lyme disease patients in his Seattle practice. 

Marty Ross, MD is a graduate of Indiana University School of Medicine and Georgetown University Family Medicine Residency. He is a member of the International Lyme and Associated Disease Society (ILADS) and The Institute for Functional Medicine.

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