By Donna Gregory Burch
I never completely accepted my fibromyalgia diagnosis. It didn’t make sense to me that one day my body just decided to go haywire for no reason. I’ve always believed there must be an underlying cause for my fibromyalgia symptoms. Pain is a signal that something is wrong in the body. So is fatigue and the compendium of other symptoms associated with fibromyalgia.
Once my doctors labeled me with fibromyalgia, they stopped looking for the causes of my symptoms. They blamed everything on “just fibro.”
But ever since my diagnosis, I’ve had this nagging question in my mind: What if it isn’t “just fibro”?
Well, sometimes answers come in unexpected ways. I won’t get into the details here – I’ve shared the entire story on my blog – but last month, I was diagnosed with chronic Lyme disease.
Lyme is a bacterial infection that’s transmitted through the bite of certain ticks. There’s some evidence it can also be passed via mosquitoes, fleas, biting flies and lice (and some think it can be sexually transmitted as well).
Early Lyme symptoms mimic the flu – fever, chills, fatigue, headache and body aches. About 50 percent of people also get a bullseye rash around the site of the tick bite.
But early Lyme can be asymptomatic. Less than half of people remember having a rash or tick bite.
Because symptoms vary, Lyme can go undetected for years. Over time, “untreated Lyme can result in neurological disorders, crippling arthritis, blindness, deafness, psychiatric or psychological disorders, or death,” reads “Lyme Disease and Associated Diseases: The Basics,” a pamphlet published by the Lyme Disease Association of Southeastern Pennsylvania.
The most common symptoms of chronic Lyme infection are extreme fatigue, joint and muscle pain, numbness or tingling (particularly in the extremities), psychological disturbances, stomach problems, vision/hearing problems … Do any of these sound familiar? If you have fibromyalgia, I bet they do!
Reading a list of Lyme symptoms, it’s easy to see how Lyme and fibromyalgia could be confused for one another. There’s a lot of overlap in symptoms! In fact, Lyme is nicknamed the “great imitator” because it’s frequently misdiagnosed as fibromyalgia, chronic fatigue syndrome, multiple sclerosis and other conditions.
My doctor explained that I still have fibromyalgia, but my symptoms may be caused by untreated Lyme disease. He says sometimes fibro symptoms will disappear after a patient is treated for Lyme and other tick-borne infections. (I’m hoping I fall into that category!)
Driving home from my diagnosis last month, I had a realization: If I’ve been living with undiagnosed Lyme disease masquerading as “just fibro” for all these years, how many of my fellow fibromyalgia warriors are unknowingly doing the same? I knew I had to use my story to help educate others, so they can get the proper testing and the right treatment if necessary.
“Diseases such as fibromyalgia and chronic fatigue and multiple sclerosis and ALS and Parkinson’s …all of those are just named sets of symptoms, and we have to not accept diagnoses like that without looking for an underlying cause,” says Marilyn Williams from the Lyme Disease Association of Delmarva. “There are multiple things that can be causing that set of symptoms, but what I teach people is don’t accept those diagnoses anymore. Don’t accept that diagnosis of fibromyalgia without digging deeper.”
Williams has learned that lesson firsthand. She lived with fibromyalgia symptoms for 16 years before she was diagnosed with Lyme and other tick-borne diseases (TBD) in 2007. She describes her symptoms as the typical ones we all associate with fibro: fatigue, muscle and joint pain, headaches and allodynia, but she also had some less common ones, like numbness in the hands and feet, irregular heartbeat and muscle twitches.
Williams now educates others on the prevalence of TBD.
So, what actions should you take if you think you might have been exposed to TBD? The following steps should help to get you started.
Step 1: Get the ELISA and western blot tests (but don’t trust the results)
In the past two years, my rheumatologist and primary-care doctor tested me for Lyme disease, and my test results came back negative both times.
How could that be? As it turns out, the Lyme tests available through Labcorp and similar labs are extremely unreliable. Most physicians follow the Centers for Disease Control’s (CDC) two-part testing recommendation for Lyme. The ELISA test is generally given first to detect if the body has produced antibodies against the Lyme bacteria. The problem is that ELISA only detects about half of Lyme cases.
“While a positive ELISA test is a reasonably reliable indication of infection, a negative test is meaningless,” reads the Lyme Disease Association of Southeastern Pennsylvania’s pamphlet.
The second test, the western blot, is a little more accurate than the ELISA, but there’s controversy over what constitutes a positive test. The CDC considers a western blot to be positive if the patient tests positive for five or more Lyme bands. In contrast, Lyme-literate medical doctors (LLMDs) diagnose Lyme based on a patient’s clinical symptoms and the presence of Lyme-specific bands. Lyme-specific bands only test positive if the patient has been exposed to Lyme.
So, if the standard laboratory tests aren’t reliable, what should you do to rule out Lyme and other TBD?
Williams advises to still have the ELISA and western blot tests. Both are simple blood tests, they’re usually covered by insurance and some patients do get a positive result. Receiving a positive result could save you from having to undergo more expensive testing later on.
You can request these tests from your primary-care doctor or skip to step 2 to save time and effort. (Personally, I would avoid the extra doctor’s visit and go directly to step 2.)
If you decide to ask your primary-care doctor for these tests, don’t be surprised if you get pushback.
“People are going to find that their beloved physician they’ve gone to for 20 years will act negatively toward them if they ask for these tests,” Williams says. “A lot of times the doctors will not want to order the tests.”
Like fibromyalgia, there’s a lot of ignorance in the medical community when it comes to TBD. The federal government doesn’t acknowledge the prevalence of chronic Lyme infection, and most traditional doctors don’t either. (The reasons for this are well beyond the scope of this article, but you can read the basics here.)
Ask for a copy of your western blot results to see if you tested positive for ANY Lyme-specific bands (bands 18, 23-25, 31, 34, 37, 39, 83 and 93). A positive test for any of the Lyme-specific bands means you’ve been exposed to Lyme.
But remember: “A negative Lyme test never means you don’t have it,” says Dr. Norton Fishman from Optimal Health Physicians in Rockville, Maryland.
Fishman says often the sickest patients will have a negative test because their immune systems are too weak to develop the antibodies screened for by the tests.
To really find out if you have chronic Lyme, you need to see an LLMD, which is a physician who specializes in treating patients with Lyme and other TBD.
Step 2: See an LLMD
If you believe you may have been exposed to Lyme disease, you’ll want to seek out an LLMD.
Tick-borne infections are extremely complex, and your primary-care doctor will not be equipped to adequately treat them. The standard treatment for early Lyme is two-to-four weeks of antibiotics, but that is not effective for chronic Lyme, and it doesn’t address tick-borne co-infections (which I’ll talk more about later). For your best chance at healing, you’ll want to work with a LLMD.
Here’s the bad news: Most LLMDs do not take insurance. I’ve been told it’s because patients with TBD require long visits, and the insurance reimbursement is not sufficient to cover the physicians’ time and expenses.
But if you’re insured, you may not get stuck paying for everything. My insurance, for example, is covering most of my blood work and prescriptions; I’m responsible for the cost of office visits.
Step 3: Your first LLMD consult
A good LLMD is going to spend an hour or more with you on your first visit. He or she will take a detailed medical history and will probably recommend additional testing.
Williams says it’s important to not get overly fixated on Lyme disease. Lyme is just one of several infections that can be transmitted by ticks. Almost all patients with chronic Lyme also carry co-infections; bartonella and babesia are the most common, but there are many others. A good LLMD will be able to diagnose and treat these co-infections as part of your overall treatment plan.
iGenex testing for Lyme and other TBD is often recommended by LLMDs since it’s more accurate than testing available through Labcorp and similar labs. (Some physicians use other laboratories, but iGenex seems to be the most popular.)
iGenex testing is usually not covered by insurance, and the TBD panels can cost several hundred dollars. The price is steep, but the results can be helpful in devising your treatment.
“If you’re a patient with fibromyalgia, and you live in an area that’s endemic to Lyme disease, you deserve a good Lyme test and co-infection test,” says Dr. Andrea Gaito, a rheumatologist who specializes in TBD at her private practice in Basking Ridge, New Jersey.
An LLMD will make a diagnosis based on clinical symptoms. Test results are also considered.
Step 4: Get treated (and hopefully get better)
I’m not going to spend a lot of time on this step because it’s beyond the intent of this article, but LLMDs differ on how they treat TBD. Some use antibiotics, some use herbal supplements and some use a combination of both.
Recovery varies from person-to-person. Treatment can be long, difficult and expensive.
Some people struggle with chronic Lyme for the rest of their lives – there also have been TBD-related deaths – but many people do get better! (We all know that doesn’t happen very often in the fibromyalgia community.)
“If they work with a doctor who understands all the facets of treatment, most people will become symptom-free if they are compliant [with their doctor’s treatment plan],” Williams says.
Like fibromyalgia, treatment often includes making lifestyle changes, such as cutting out certain foods and reducing stress.
“The people who stay well and stay symptom-free are the people who have adopted these new lifestyle changes,” Williams says.
I’ve never bought into the “it’s just fibro” explanation for why I’m sick. I’m not saying that Lyme disease is responsible for all cases of fibromyalgia, but I do think it could be the underlying cause for some of us – and it’s a cause that really needs to be investigated and ruled out.
It would be my worst nightmare to live the next 20 or 30 years with fibromyalgia when I actually have a condition that’s treatable. I’m hoping my story will help some of you avoid that same nightmare.
My Lyme diagnosis has given me hope. Yes, the months (and possibly years) ahead are going to be difficult, but at least I am getting the right treatment now. I am closer to recovery than I was when my doctors said it was “just fibro.”
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.