11.23.2017

What every fibro warrior needs to know about Lyme disease

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This article was originally published on Prohealth.com. It is being republished here with permission from the editor. 

What every fibro warrior needs to know about Lyme disease | Fed Up with Fatigue
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.

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Comments

  1. Rachel R. says:

    If I have taken the tests from the doctor and they came back negative, why would these tests from Igenex possibly be positive? The two tests you took look like they are for antibodies, not bacteria. I’ve been sick for at least 6 years and have no immune system left. I doubt antibodies would show up with tests 188 and 189.

    • Donna Gregory/FedUpwithFatigue.com says:

      In the 1990s, the CDC developed a vaccine for Lyme. It’s been taken off the market now b/c it actually gave people Lyme disease, but when they created that vaccine, they stopped including the most common Lyme bands in the test given by conventional physicians. What that means is that the standard test does not include the bands that would most commonly show up positive in patients who have contracted Lyme. The CDC hasn’t put those bands back into the standard test b/c they didn’t want a whole bunch of false positives from people who previously had the vaccine. The result is an extremely high rate of false negative for various reasons, including the issue w/ the missing bands.

      The iGenex test includes those missing bands, so even though it is an antibody test, it is a much more accurate test. If you don’t feel comfortable w/ an antibody test, the DNA Connexions test actually tests for the DNA of the Lyme bacteria and several other co-infections in your urine. It is a more expensive test, but it tests for several other infections in addition to Lyme. The DNA test also doesn’t require a physician’s order. You can do it on your own. DNA Connexions wasn’t available (or I hadn’t heard of it) when I had my testing back in 2015. If I had it to do over again, I would probably go w/ DNA Connexions b/c it’s a DNA test and tests for those extra infections.

      • My concern and multiple specialists is that Igenex often gives a false positive even in healthy people.

        Treating with herbs is generally safe, I’m doing that in case. The “chronic Lyme” path though, I’m afraid with years of antibiotics could be dangerous and cause more harm than good. I would think 1-3 months of antibiotics max and beyond that try natural approaches. The tests from CDC and Igenex are both lousy. I did igenex twice all the band’s shifted. I’m highly skeptical.

        • I too am skeptical of these tests. My early tests were negative. I found an MD, NP that treated me for Lyme and as they say if you don’t have it it does nothing. if you do have it you become sick as the Lymers die off and I did become very ill. However, my Physician passed away of cancer and I never got finished with my treatment. It did though really open my eyes and helped me be more aware of my illness. I have chronic Lyme and really bad fibromyalgia which was diagnosed years ahead of when I got Lyme. I was in Virginia when I was notably bit by the tick which I found and removed , near 24 hours after attachment , within 5 days became very flu ill and was left untreated because my Washington state Dr. said it was just my fibro. I had antibiotics 5 months later because I threatened to kill myself if they did not help me. That was in 2005. I still suffer with both the Lyme and Fibro. Life sucks sometimes but what can you do if you don’t have thousands of dollars to pursue help. I almost went broke with the one Dr. that started helping because no insurance to cover it.

      • Rachel R. says:

        That is mind blowing, you should include that part if you write another article about Lyme. Thank you for your response!

  2. Lyme is very similar to syphilis in spirochete form and action. There is no chronic syphilis. There is late stage syphilis like Lyme but can be eradicated with a a few extra weeks of antibiotics than the typical initial course. If we had an active pathogen for chronic lyme, ME, fibro etc we would have very evident flu symptoms ie: high fever, chills, shakes, diarrhea, nightsweats. It doesn’t add up for most people. We are all very sick but likely hitting the wrong target.

    As for not being able to get rid of all the bacteria, our bodies usually can’t for many pathogens, the point is keeping them in check but if they are at low levels they are not dominant and not making us sick. We just dont want any pathogen to get the upper hand. Many of us have c-diff, MRSA, candida but we just keep them at bay.

    As for what triggers fibro it is unknown but the Pridgen trial is using antivirals and an anti-inflammatory so I wonder if there is a role.

    I think it isn’t the case for everyone, it is far from cookie cutter and many subsets for all these illnesses but I think the immune system is largely the problem with all of these conditions.

  3. Most chronic Lyme patients probably have post Lyme syndrome or fibromyalgia. The initial infection is likely gone but wrecked havoc on the immune system. Most fibro and ME patients had a viral onset. Distinct from Lyme patients. Multiple different symptoms too

    Most docs think Igenex cross reacts with a lot and is inaccurate and giving tons of false positives for Lyme.

    • Donna Gregory/FedUpwithFatigue.com says:

      I disagree with you on several points. Post Lyme syndrome is a diagnosis for those people who were treated for acute Lyme and continue to have symptoms after treatment. Most people w/ so-called chronic Lyme, like myself, were never treated for acute Lyme for various reasons – whether it’s b/c our tests came back negative or we were asymptomatic for the infection, etc. The Lyme bacteria is extremely intelligent at evading the immune system. Research has proven that Lyme is a persistent infection, meaning even if you treat to the point of being symptom free, you never are able to get rid of all of the Lyme bacteria. They persist in the tissues of the body. There is no cure – only remission and keeping the bacteria in check for the rest of your life. I know for a fact that I have an active Lyme infection b/c I have had live blood analysis, and I could literally SEE the spirochetes and cyst forms and biofilms swimming around in my blood, so no, it’s not just immune system damage as you say (although it definitely does suppress the immune system and that’s part of why we are sick).

      Re: viral triggers for ME/CFS and fibro. It is true that many ME/CFS patients’ symptoms were triggered by a viral infection; that is not the case for fibromyalgia patients typically. Fibro patients’ symptoms are typically triggered by some sort of trauma – a huge stressor, like a death or divorce, surgery, auto accident, etc. Some do start w/ an infection, but that’s more likely to be found in ME/CFS.

      • Rosemary Gerrard says:

        Thank you for this article..a lot of the stressors sound like me…so l think a lot of what I feel+have felt over the years I have had to deal with fibro….my latest stress was 2010 my hip broke after years of falls to my right side…2014 had misfortune to slip on damp ground +broke my left femur…my husband+I decided it was about time to move to less stressful environment…once again moving was stressful+we are both learning to cope better….I had to learn to say NO a lot more!….the ache of my whole body has been helped with tramadol slow release 150mg!+magnesium…but all muscles remain sore to touch….keep up your good articles I look forward to them each week….

      • what is ME/CFS?

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