This article was originally published on Prohealth.com. It is being republished here with permission from the editor.
Before diagnosing you with fibromyalgia, your doctor may have tested you for Lyme disease, a bacterial infection frequently transmitted by ticks. If you received a negative test result, he or she likely crossed Lyme off their mental list of potential causes for your symptoms and moved on to ruling out other conditions.
But what many doctors don’t realize is the standard testing for Lyme disease is only 50-60 percent accurate. That means you could still have Lyme even if you’ve tested negative for it!
About 18 months ago, I learned this lesson firsthand when I found out I have Lyme. I had been diagnosed with fibromyalgia in 2014. At the time, my rheumatologist ruled out all the typical culprits of my symptoms, including Lyme. In fact, I was tested at least twice for Lyme through Labcorp, and both times my tests came back negative.
Two years after my fibro diagnosis, I learned about the high rate of false negatives in Lyme testing. I’d always had this nagging feeling that my doctors were missing something. My symptoms didn’t improve with the typical fibromyalgia treatments, and I was desperate to find relief from the continual pain, fatigue and other symptoms that I live with on a daily basis.
Having grown up in rural Virginia, I had a history of tick bites, so it made sense to me that I might have contracted Lyme. I decided to have iGenex testing, which is much more accurate than the testing available through Labcorp, Quest and similar mainstream labs.
The iGenex testing indicated I have Lyme. I’ve since found out my story is common among Lyme sufferers. I’ve lost count of the number of people who have told me they were diagnosed with fibromyalgia and later found out they have Lyme. Based on my own research, I suspect thousands – maybe even millions – of fibro sufferers around the world have Lyme and don’t know it.
That’s tragic when you consider that Lyme is treatable. Yes, it’s extremely difficult to treat, but some people do recover and get their lives back. In contrast, recovery stories are extremely rare in the fibro community.
Since my Lyme diagnosis, I’ve made it one of my missions to educate the fibro community on the link between fibromyalgia and Lyme. Below, I’ll share some of the common misconceptions about Lyme, along with helpful information on how to get properly tested and evaluated.
Myth 1: I was tested for Lyme disease, so there’s no way I have it.
As mentioned above, the testing used by mainstream labs is only 50-60 percent accurate. The primary reason for this is because the standard testing isn’t actually looking for the presence of Lyme bacteria. Instead, it’s looking for antibodies, which the body develops when it detects the Lyme bacteria.
Many cases of Lyme are missed because it can take weeks for those antibodies to form, so if you were tested too early in the disease process, then you’ll have a negative test result. (Some people never develop the antibodies at all due to a poorly functioning immune system.)
The standard testing also fails those who have long-term exposure to Lyme. As the Lyme bacteria invades the body, it suppresses the immune system, and the body stops making antibodies against the bacteria. If you were exposed to Lyme years ago, the chance of it showing up on a standard test is very slim.
I have had the standard Lyme test via Labcorp at least half a dozen times at this point, and it’s always come back negative even though my Lyme diagnosis has been confirmed with iGenex testing and live blood testing.
Myth 2: I don’t have Lyme because I’ve never been bitten by a tick.
Only 30 percent of Lyme sufferers remember a tick bite. Ticks can be smaller than the size of a poppy seed. They also tend to migrate to out-of-the-way places, like the scalp, belly button or groin, so they are easy to miss.
There is also some evidence that Lyme may be transmitted by insects such as mosquitos, biting flies, sand fleas and others.
Myth 3: I’ve been bitten by a tick, but I couldn’t have Lyme disease because it wasn’t attached for very long.
The U.S. Centers for Disease Control contend ticks have to be adhered to the skin for 36-48 hours in order to transmit Lyme, but the science suggests transmission can occur much sooner.
Myth 4: I don’t live in the northeast so I couldn’t have Lyme.
Lyme is found in every state in the United States. When a doctor says, “We don’t have Lyme in [insert your state name here],” he or she is just plain wrong!
Lyme is more common in some states than others. The most endemic areas include the northeast and mid-Atlantic (from Maine to Virginia), the north central states (mostly Wisconsin and Minnesota) and the west coast (particularly northern California).
Myth 5: I live in a city or the suburbs so there’s no way I have Lyme.
Ticks do not recognize arbitrary borders like city limits. If you have birds, deer, mice or any other sort of wildlife in your area, then there are ticks there as well.
You don’t have to be an outdoorsy person to contract Lyme. Lyme also lives in seemingly safe places, like city parks and backyards.
Myth 6: I don’t have Lyme because I’ve never had a bullseye rash.
Not everyone who contracts Lyme develops a bullseye rash. Estimates vary depending on the study, but on average less than half of patients ever have the telltale bullseye rash.
Myth 7: I don’t have flu-like symptoms so I don’t have Lyme.
Flu-like symptoms are common in the early stages of Lyme, but some people are completely asymptomatic.
As Lyme takes hold in the body, the symptoms become much more complex and diverse. The most common symptoms of chronic Lyme infection are extreme fatigue, joint/muscle pain, cognitive impairment, numbness/tingling (particularly in the extremities), depression/anxiety, digestive problems, neurological issues (tremors, bell’s palsy, etc.) and changes in vision/hearing.
Do those symptoms sound familiar? They should because many of them are also symptoms of fibromyalgia.
Reading a list of Lyme symptoms, it’s easy to understand why Lyme and fibromyalgia could be confused for one another. There is so much overlap in symptoms!
Lyme is actually dubbed “the great imitator” because it’s frequently misdiagnosed as fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Parkinson’s, dementia, ALS and other conditions.
If you think you might have been exposed to Lyme, a good way to gauge your risk is to fill out Dr. Richard Horowitz’s Lyme questionnaire.
Dr. Horowitz, one of the most well-known Lyme experts in the U.S., said this during a recent lecture: “Lyme clearly is the great imitator. The way that you know it’s not chronic fatigue syndrome or fibromyalgia is the following: If you have good and bad days where the symptoms come and go, and the joint pain, the muscle pain and the nerve pain – the tingling, numbness, burning, stabbing feelings – if it comes and goes and moves around your body …[that] is the hallmark of Lyme disease.”
Myth 8: It’s easy to get rid of Lyme.
If caught early, Lyme is usually treatable with two-to-four weeks of antibiotics. However, if left untreated, Lyme can develop into a debilitating chronic condition that’s difficult to treat.
Co-infections further complicate Lyme treatment. When a tick bites, it not only transmits Lyme but other infections as well. The most common are bartonella, babesia and mycoplasma. Co-infections can be just as hard – if not harder – to treat than Lyme.
How to get properly tested and evaluated
Some Lyme specialists do recommend having the standard testing as a first step toward being evaluated for Lyme. Health insurance companies usually cover this testing, so it’s easy to access and affordable.
The standard testing does detect Lyme in some cases. If you fall into that group, you’re lucky because it means you’ll be able to forgo more expensive testing.
But for most people, getting properly tested will mean paying out of pocket. iGenex is currently the gold standard for testing in the Lyme community. It’s still an antibody test, but it’s much more accurate than the standard testing through Labcorp and similar labs.
The most basic, least expensive Lyme test through iGenex (#188 and #189) costs around $250. Yes, I know that’s a lot money, but it is worth every dollar to get the right diagnosis.
Test kits can be ordered directly from iGenex, and the blood can be drawn at your doctor’s office.
As another option, the DNA Connexions test is a newer test that some Lyme specialists are using. Instead of testing for antibodies in blood, it looks for the DNA of the Lyme bacteria in urine. The DNA Connexions Lyme panel tests for Lyme plus several co-infections, but it costs more than iGenex. The last time I checked it was around $500. The good thing about DNA Connexions is that anyone can order the test; no doctor or blood draw is required! All that’s needed is a urine sample, which can be collected at home.
Beyond testing, your primary-care physician or other fibromyalgia doctor is probably not going to be of much help when it comes to diagnosing and treating Lyme. They just aren’t educated enough on the complexities of Lyme.
To get properly evaluated and treated, you’ll want to seek out a Lyme specialist, also known as a Lyme-literate medical doctor (LLMD).
The easiest way to find an LLMD is to ask for a recommendation from your nearest Lyme disease association. Your state and/or local Lyme chapter will always know the best specialists in your area. LymeDiseaseAssociation.org and ILADS.org also have doctor-referral services on their websites.
LLMDs typically use a combination of testing and clinical expertise to diagnose Lyme.
The bad news is that most LLMDs do not accept health insurance. Because Lyme is so complex, practitioners may spend an hour or more per appointment with each patient. Under our current medical model, there’s no way they could survive financially on insurance reimbursements.
Treating and beating Lyme
Treatment is one of the most controversial aspects of Lyme. Some LLMDs rely on the use of long-term antibiotics. Others use herbal protocols. Some combine the two.
Then, there are more alternative treatments, like ozone therapy, stem-cell transplants and RIFE machines.
The bottom line is, like fibromyalgia, there’s no tried-and-true treatment for chronic Lyme. It’s extremely challenging to banish because Lyme is the smartest bacteria on Earth. They use their corkscrew shape to burrow deeply into the body’s tissues where antibiotics can never reach. They can change their shape and form, so they’re invisible to the body’s immune system and protected from antibiotics and herbs. They will go into hiding while you’re treating with antibiotics and/or herbs, and when you stop treatment, they’ll come back out and begin causing havoc again.
I know some of you are probably thinking, “Well, if it’s so tough to treat, why bother?” Because Lyme disease is beatable! While there is no cure for chronic Lyme, remission is possible. Some people do recover and go on to lead normal lives!
That’s my greatest hope for myself and for everyone diagnosed with chronic Lyme.