06.13.2016

It may not be “just fibro” | It could be Lyme disease

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The following article on Lyme disease and fibromyalgia was first published on NationalPainReport.com and is being reprinted here with permission from the editor. 

There's a lot of overlap between the symptoms of chronic Lyme disease and fibromyalgia. Your fibromyalgia symptoms could actually be caused by untreated Lyme and other tick-borne diseases.

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 in a separate blog post – 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 mosquitos, 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.

The overlapping symptoms of chronic Lyme disease and fibromyalgia

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.

Dr. Richard Horowitz, one of the nation’s most well-known Lyme physicians, has developed this online questionnaire to help determine your risk of Lyme disease. I found the results helpful when I was trying to figure out if I needed to be evaluated by a Lyme specialist. If you think you’ve 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.

The easiest way to find an LLMD is to ask your nearest Lyme disease association for a recommendation. LymeDiseaseAssociation.org and ILADS.org also have doctor-referral services on their websites.

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.

Final thoughts

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.”

Related post…

If you liked this post on Lyme disease and fibromyalgia, then you might also enjoy “My new diagnosis,” which details the story of how I came to be diagnosed with Lyme.

For years, I've lived with unexplained pain, fatigue, cognitive dysfunction and other symptoms. When all of my blood test came back negative, I was diagnosed with fibromyalgia. Yesterday, I added another diagnosis: chronic Lyme disease.

(This post is part of Being Fibro Mom’s Friday Linkup!)

Each week, FedUpwithFatigue.com covers the latest news, research and practical tips to help you live better with fibromyalgia and ME/CFS. If you liked this post, please sign up for updates below.







Sign up for updates and receive my free report, “There’s an effective drug for fibromyalgia and/or ME/CFS that your doctor might not know about.”

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Comments

  1. Brenda says:

    I was diagnosed with Lyme Disease in 2010 was treated for 28 days with IV Rocephin and less than 6 months later told I had fibro. I still question if I still don’t have problems with the Lyme Disease. I have seen so many different drs that I get told I am dr hopping or it is all in my head and all I want is to feel better. I am moving to a new state to live and will start my search all over again to see if I can find he help I need to help me feel better.

    • Donna Gregory/FedUpwithFatigue.com says:

      If your symptoms began w/ Lyme, then you very well may still have an active Lyme infection, not fibro. Have you had iGenex testing? That’s the best testing available at this point.

  2. Simone says:

    It is another long story, and do not worry, I will not tell all of it … The very first energy practitioner (Reiki) that I took classes with perceived that I had “Lyme’s Disease” and she set out to cure me, because she had overcome it within herself. I did not want it. The issue kind of broke our relationship. That was ten or so years ago, and recently in the last month, I watched the documentary “Beneath Our Skin” and I felt so kindred with the victims of it. It is like another can of medical worms. We do not have those kind of ticks where I live, but I spent a year trekking with horses in a part of the country where they are prolific when I was college age, and it was standard procedure to pick ticks off of me and my horse several times a day. I was pretty brave back then, but secretly so squeamish about those disgusting bugs that I blocked them out of my experience. We also encountered ticks during our explorations of State Parks in OR and WA ten years ago. The problem with me, and where I am at – rather disenfranchised with the medical services available to me – which is a *free* health consortium in my state for Natives – and in “end stages” of chronic myofascia pain disease, I do not have any kind of tolerance physically for lengthy doctors appointments, invasive procedures or imposed treatments. It literally takes DAYS for me to recover from these things. Dental work is a nightmare. I am a total wimp. And I am real certain my available clinic, my only option, will not treat Lyme’s Disease. I am a beneficiary of their health care and my husband has good insurance, but that would never last if I was diagnosed with another disease. And, plus … if I contracted Lyme’s when I was nineteen, that was over thirty years ago. I would be in late stages. Maybe I need to find my old Reiki Master and commence her odd regime again? It is probably time to take my head out of my ass. I have read that CBD Oil treats Lyme’s and all it’s confections.

    • Simone says:

      I just picked up a brochure on Devin Starlanyl’s Fibromyalgia & Chronic Myofascia Pain page that confirmed CMP might be caused by Lyme’s Disease. I am really alarmed. But it seems I am on the right path. I guess I will start downloading books to educate myself on how the treatments work for end stage sufferers. Addressing the LD should improve the FMS / CMP in any case. If I ask for the test at my local clinic they will probably laugh and call me a hypochondriac because a Lyme diagnosis would be extremely rare in our area, but I am really not the type to think I have every disease I read about. There are just too many parallels for me to stay deaf, dumb and blind if adjusting myself to this possibility could improve the quality of my life. If I have Lyme’s Disease it is not like confirming it will suddenly add more complications to my life. If I have it, then I have already had it for thirty years, and I am still surviving each day. I will be ashamed I was in denial though.

      • Donna Gregory/FedUpwithFatigue.com says:

        There’s a link in the post to help you find a Lyme specialist. Regular doctors are not educated in chronic Lyme and will not know how to properly test you or treat you for it. I’ve found that it’s basically a waste of time to talk w/ traditional doctors about it. They either don’t believe in it or don’t have a clue how to treat it b/c it’s so complex. It’s really best to see a specialist who knows the best tests to use and how to interpret them.

    • Simone says:

      Your link to the Lyme Disease Association showed over 95 cases of Lyme Disease in Alaska. So, it is not unheard of, whether they can’t contracted it elsewhere or not. Alaska has been a very clean state because of our climate, but since global warming is accelerating, we have been seeing a rise in disease bearing bugs, likes fleas and ticks. I still think I was exposed in WV. Scenarios (symptoms) that I experienced and dismissed back then are coming back to me. Those days were the first time I experienced excruciating whole body pain and temporary morning paralysis, as well as strange flu-like symptoms that came and went. I was riding horses twelve hours a day into backcountry, and I was young and stupid, and did not let anything slow me down.

  3. Jorie says:

    I contracted Lyme at age 7. I was not diagnosed with Lyme, but I had a classic case, rash and all. It wasn’t known where I lived in 1980. I have never been well since. I got a fibro diagnosis at age 19. My experience with LLMD’s has not been good, however. They always seem to want me to do weird diets, like gfcf. I’m not willing to do that. What do you think?

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m a member of several Lyme groups on Facebook, and I can tell you that many, many people w/in those groups say cutting gluten, dairy, sugar and pretty much anything processed really improves their symptoms. I’ve been gluten free for the past year and have been advised to consider cutting out dairy by my LLMD. My diet is cleaner and healthier than most people’s. I do see a difference in my symptoms when I cheat vs. when I’m eating clean and staying gluten free. Obviously changing one’s diet is a personal decision. For me, I would do most anything to feel better.

  4. Alison Briggs says:

    For some reason this worries me, I was diagnosed with fibro in Oct 2015 bit my fatigue is so bad. However a few years ago I was bitten and had the bullseye type rash on my thigh, it was huge, doctors were reluctant to perform a blood test but I insisted. The results came back clear and eventually I began to believe it, but now I’m not so sure.

    • Donna Gregory/FedUpwithFatigue.com says:

      The standard Lyme testing is only about 50% effective. You could have a negative test and still have Lyme. I was tested at least twice using the standard testing, and both times came back negative. I had to have iGenex testing for it to show up. It might be worth looking into seeing a LLMD especially since you had a rash.

  5. Bob Kelley says:

    I just read the article in the Chesterfield observer and while it serves to alert the public about Lyme disease it leaves out a few cogent points. The most important being that not all ticks carry lyme. In particular the Dog tick. The internet has excellent sources for separating the species. I had a bout with Lyme two years ago and was infected by a deer tick (my understanding is that this species is the prevalent carrier) and ended up with three hospital trips, bells palsy and other side effects. I also had many bull’s eye rashes. The VA took many photos and they are used in infectious disease classes. The antibiotics did their job and after three hospital stays the symptoms went away and I have had no trouble since. A new strain of lyme was publicised in the Richmond paper about a year ago. Thank you for your attention to this serious disease and it’s mysterious and debilitating results. I am not trying to be critical, just helpful.

  6. B King says:

    My daughter contracted Lyme in September 2001 after a visit to long island. Initially diagnosed as joint pain, etc. No MDs in Richmond diagnosed Lyme. Went to Hammond, NJ and MD there said it was Lyme, but needed different tests other than Western Blot. We wound up seeing Dr. Jones in New Haven CT. Received a confirmation that it was Lyme and with a PCR test it was indeed Lyme. Lot’s of antibiotics. Then 2 months of IV antibiotics: Claforin. Found a wonderful MD in Portsmouth and received additional care. My Daughter made it, but it was very difficult and insurance companies kept trying to deny coverage. Don’t give up and get IV antibiotics that made the difference.

  7. mytake says:

    Always see ticks as the leading cause. Try “black mold” growing in your home.

  8. This is a story that I come across more and more, when FMS is finally found to be Lyme! Hopefully these tests will become less expensive so more people can get the diagnosis that is correct! Thank you for partying @chronicfridaylinkup! Pinned/Shared/Tweeted

  9. Wow this sounds just like me I was diagnosed first with fibromyalgia then found an LLDR. I also have a CDC positive for Lyme I need treatment now I’m trying desperately to raise the funds for that so that I can get better as I have chronic fatigue syndrome and autoimmune disease but those are also being caused by the Lyme any help is appreciated even a share or a prayer. https://gofundme.com/lyme99

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Jeannette, sending you some positive thoughts for healing and abundance! I hope you’re able to get the treatment you need.

  10. I’m so glad you published this–you did a tremendous job on your research and everything! I will say the chances of getting a bulls-eye rash are even LOWER than 50% and another form of transmission is possibly in utero. When I was diagnosed and saw my first LLMD, the doctor was so thorough; she must have spent 4-5 hours with me the first visit! You’re right though, most people don’t understand that it’s not just LYME that is hurting us. I have several co-infections that tagged along with it: Babesia, Bartonella, Ehrlichiosis, and Mycoplasma. From the other people I’ve spoken with on various Lyme disease support groups/chat rooms/twitter chats, it seems like 3-4 coinfections are roughly normal. So much fun when it comes to treatment… Anyhow, hope I’m not scaring you; I’m just so glad you are getting the word out there and reading up about this for yourself!

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m glad you liked the post. It’s such a complex subject, so I tried to keep it as simple as possible but to put everything in that people would need to know to get started. It was quite a challenge. I’ve been following your blog since my diagnosis.

  11. Such an important article, Donna! I was first diagnosed with multiple sclerosis and treated that for a couple years before I began to question and search for other possibilities. I was diagnosed with chronic Lyme two years ago. It was likely developed as a child so I have a lot of healing left to do, but there is comfort in being on the right path. If you ever want to chat I’m here! Thanks for sharing your experience!

  12. Hello Donna. Your posts are so informative and I am really glad I came upon your website! I read your post concerning your recent diagnosis for Lyme’s disease and I was just wondering if the different tests offered where you live are also offered in Canada? Or perhaps you would know any referrals that I could ask in Canada? Thanks in advance for your reply and I wish you all the best of luck in your healing process. Regards, Jacinthe.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m not sure if iGenex is available in Canada or not, but you could probably find the answer on their website, http://www.igenex.com. If not, there should be compatible tests in Canada. A local LLMD can help you w/ testing.

  13. After all these years my doctor has never mentioned or tested me for lyme. Not that it’s never crossed my mind, it has, but I haven’t thought to ask when I’m there and, like I said, he hasn’t either. Thank you so much for all this info! I definitely have some things to talk about with him at my next appointment!

    • Donna Gregory/FedUpwithFatigue.com says:

      Glad you’re going to look into it. I hope he’s open to the conversation.

  14. Mamie says:

    Hi
    I don’t know if was you who posted something about the fibromyalgia and Lyme Disease link:
    I have always wondered if I had Lyme as I was an avid camper, hiker and general outdoors person.
    Many of the early symptoms were viral like with aching joints, head ache (which recurred over the
    first few months)–When on an antibiotic I felt better but the PA that was treating me said that just meant
    I had a prolonged virus.
    I have tested negative to Lyme in the past. Is there a “latent Lyme” disease test out there?

    • Donna Gregory/FedUpwithFatigue.com says:

      The iGenex testing that I mention in the post tests for both recent and past exposure. Your early symptoms and the fact that you felt better on antibiotics sure do sound a lot like Lyme.

  15. This is SO important. This happened to me and it scares me how many other people may be unable to get well because they aren’t properly diagnosed. The medical system makes it SO hard to get real results about Lyme and harder still to get the treatment needed. Thank you for posting about this!
    http://www.shipwithnosails.com

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, I think it’s really important to get this message out. If there are 5 million fibro sufferers just in the US, then there must be thousands and thousands of those who have undiagnosed Lyme and don’t know it. The thought of that makes me sad b/c Lyme is treatable and recovery is possible.

Trackbacks

  1. […] is a good overview of steps to take if you think you might have been exposed to Lyme. (I wrote a similar article last year.) There’s a lot of overlap between the symptoms of Lyme, fibromyalgia and chronic fatigue. […]

  2. […] It may not be “just fibro” | It could be Lyme disease […]

  3. […] Just a warning re: Lyme testing…the standard western blot administered by most physicians is only 50-60% accurate in active Lyme cases (where the person was just recently bitten). It has an extremely high rate of false negatives. You could test negative and still have Lyme. If you were bitten weeks, months or years ago, then the chances of it showing up on a Lyme test are very, very slim. I was tested w/ the standard testing on at least two occasions and both times it came back negative. I finally got a positive result when I had more advanced testing done through iGenex. I discuss more about testing in this post: https://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/ […]

  4. […] It may not be “just fibro” | It could be Lyme disease […]

  5. […] It may not be “just fibro” | It could be Lyme disease […]

  6. […] It may not be “just fibro” | It could be Lyme disease […]

  7. […] It may not be “just fibro” | It could be Lyme disease […]

  8. […] It may not be “just fibro” | It could be Lyme disease […]

  9. […] It may not be “just fibro” | It could be Lyme disease […]

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