If your doctor did a thorough job, he or she probably tested you for Lyme disease before finally diagnosing you with fibromyalgia. You likely received a negative test result and thought that you’d ruled out Lyme as a possible cause for your symptoms.
You can receive a negative test result for Lyme and still have Lyme disease. What many people don’t realize is the standard testing used by most doctors – the ELISA and western blot tests – are only about 50-60 percent accurate. That’s equivalent to a coin toss!
I was diagnosed with fibromyalgia in early 2014. During that process, I was screened for Lyme at least twice using the standard testing. Both tests came back negative. I eventually sought out more advanced testing and was diagnosed with Lyme disease last spring.
Since then, I’ve interviewed numerous doctors and patients about the connection between fibromyalgia and tick-borne infections (TBI), like Lyme, and I’ve come to a troubling conclusion: I suspect millions of people who are diagnosed with fibromyalgia actually have TBIs and don’t know it.
There are several reasons for this. First, there’s a huge overlap between the symptoms of fibromyalgia and TBI, increasing the odds of misdiagnosis. Second, as I just mentioned, the testing is grossly inaccurate and gives a high rate of false negatives. And third, a lot of people believe TBIs are only found in the northeast and the Great Lakes region of the United States.
Lyme, the Great Imitator
Because symptoms can vary from person to person, TBIs can go undetected for years. The most common symptoms include extreme fatigue, joint and muscle pain, brain fog, numbness or tingling (particularly in the extremities), neurological issues, anxiety/depression, digestive problems and vision/hearing disorders. Do any of these sound familiar? They should because they are the classic symptoms of fibromyalgia.
If you review a list of Lyme symptoms, it’s easy to understand how Lyme and fibromyalgia could be confused for one another. Lyme has actually been nicknamed the “great imitator” because it mimics so many other conditions, such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Alzheimer’s disease and others.
In 2016, singer-songwriter, Kris Kristofferson, made national headlines when he revealed he had Lyme disease. He was previously diagnosed with fibromyalgia and Alzheimer’s, and his health had deteriorated to the point of incapacitation. After being treated for Lyme, he was able to perform on stage again.
Other celebrities have shared their Lyme disease journeys in recent years, including Daryl Hall of the pop group Hall & Oates and singers Avril Lavigne and Debbie Gibson.
IGeneX Labs does test for many of the tick borne coinfections, including a variety of tests for Borrelia burgdorferi (Lyme disease), Babesia microti and Babesia duncani, Human Monocytic Ehrlichia and Anaplasma Phagocytophila, Bartonella henselae, and Rickettsia species (Rocky Mountain spotted fever, Mediterranean spotted fever, Boutonneuse fever, Israeli spotted fever, Astrakhan fever, Indian tick typhus, Murine typhus, Cat flea rickettsiosis, flea-borne typhus.)
Tests for each pathogen may be done by PCR, antibody, and in some cases, FISH. These tests are available individually, and as panels. IGeneX has also recently added CD57 Natural Killer Cell testing.
Babesiosis is like malaria with the symptoms of acute disease being fever, chills, vomiting and fatigue. It is usually self-limiting except in Lyme patients and those who have undergone splenectomy. There are two forms of Ehrlichiosis: Anaplasma phagocytophila (HGE) and HME (Human Monocytic Ehrlichiosis). HGE is primarily on the East coast, upper Midwest and California. HME is primarily in the Southeast, lower Midwest and Southwest, with cases reported in CA, NJ, NY, and WI. These acute diseases may have symptoms of fever, chills, vomiting and fatigue and require prompt antibiotics. Subclinical forms of these diseases may be present in patients with Lyme disease.
You can also send ticks to be tested for all of the above infections. This testing can be useful when you find a tick attached, and you want to determine whether or not it could have passed any of these infections to you. It is estimated that up to 20% of the ticks with Lyme disease may have one of these other diseases.
If you have symptoms that are not resolving on Lyme treatment, you should discuss with your practitioner whether you need further testing to see whether other infections are involved in your case. Because Lyme disease can suppress your immune system, it can make you vulnerable to a variety of infections that might not otherwise be a health problem.
Why do patient symptoms vary so much? Everyone seems to have different symptoms so how can we be sure we all have Lyme disease?
There is virtually no illness in which a specific disease manifests the exact same way in everyone who has that disease. For example, if a woman goes through menopause, she may experience primarily hot flashes or night sweats, or she may have difficulty sleeping, or low energy, or mood swings, or depression, or vaginal dryness, or decreased libido, or difficulties with focus, memory, and concentration, or some combination of all of these.
Lyme disease is much more complicated than menopause, and it is not surprising that it can present in many different forms. It is so varied, in fact, that we often call it the “great masquerader.” And, of course, we are often not only dealing with the Lyme spirochete, Borrelia burgdorferi, but also with the the accompanying co-infections which include Bartonella, Babesia, Ehrlichia, and Mycoplasma. If that were not complicated enough, the weakened immune system produced by the Lyme infection(s) allows for other opportunistic infections which had been latent in the patient to show up as well, including Epstein-Barr virus, Cytomegalovirus, HHV6 (Human Herpes Virus 6), and Chlamydia pneumoniae, among others.
I hope this explains why symptoms vary so extensively. The second aspect to this question is even more difficult: how can we be sure that any individual truly has Lyme disease and all that entails? The most accurate answer is that certainty is very difficult to come by. Our tests are not as accurate as we would like, and we base a great deal of our treatment plan around how our patient responds to our presumed diagnosis and treatment. Improvement in our patients may take weeks or months to occur. This leaves us frequently uncertain about our decisions and choices, but hopeful that the choices were the right ones for that individual. It would be wonderful if we could bring a great deal more scientific analysis to the table, but at this moment we have to make do with what we have.
If an individual requires certainty to make these difficult choices, they may be faced with waiting a long time to decide on a treatment plan, and if that individual does have Lyme disease and associated co-infections, waiting is likely to lead to a significant progression of their illness.
While IGeneX Labs tests many coinfections that can be found in patients with Lyme disease, there are other possible coinfections that they do NOT test for. Viral infections such as HHV-6, Epstein Barr Virus (EBV), and Cytomegalovirus (CMV) may not be problems in people with healthy immune systems, but may be problems in those with compromised immunity. Mycoplasma, Chlamydia and Helicobacter pyloriinfections may be found. Many chronically ill patients have problems with yeast and fungal infections. Some patients with chronic Lyme disease have tested positive for the new retrovirus, XMRV. Patients with Lyme disease can carry a wide variety of other infection, some of which are not treated by the antibiotics used for Lyme disease.
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