How to get your doctor to test you for Lyme disease.

There are many reasons to ask your doctor to test you for Lyme disease. Maybe you think you've been exposed to the disease, perhaps from a tick bite. Maybe you feel sick after being exposed to ticks or other Lyme disease carriers, for instance, when hiking or camping. Or perhaps you are experiencing what might be symptoms of late Lyme disease, such as joint pain and nervous system problems.

You might find that it's sometimes difficult to convince doctors to order the Lyme test, especially if your case does not follow the usual exposure-rash sequence. Perhaps they don't realize the variety of Lyme's manifestations. Maybe they think that you have something other than Lyme disease (since Lyme can imitate many other conditions). Maybe they don't think Lyme disease is prevalent in your area.

Whatever the response you get, it's important to get tested for Lyme disease if you think there's a chance that you have it. A negative test result won't tell you much (see my hub on Why you can test negative for Lyme even if you have it), but a positive result could help you to obtain the treatment you need.

How to Explain Why You Want to be Tested

1) Lyme disease is present in every state in the United States. It's also present in parts of Europe. Your doctor can't use the excuse, "We don't have Lyme disease here."

The Lyme bacterium has been found in ticks in every state of the country, Dr. Susan Little reported at the 2008 North American Veterinary Conference. Lyme disease was reported in 46 out of 50 states during 1992-2006, according to CDC Surveillance for Lyme Disease, which is probably an underestimate given the spread of Lyme in the past two years and the strict standards for what constitutes Lyme disease for epidemic surveillance.

Moreover, even if you live in a part of the country with low rates of Lyme disease, chances are that you - or your pets - have traveled somewhere with more Lyme exposure within the past years or decades. Even if the exposure was long ago, it could be responsible for your symptoms, since it can take a while for the disease to manifest or for you to realize that it might have Lyme disease. Personally, I probably contracted Lyme disease during a trip to Connecticut, so I am an example of contracting Lyme disease in an area other than where you live.

2) Lyme disease is called "The Great Imitator" because it can manifest as many different symptoms. (See my upcoming post on the variety of symptoms of Lyme disease.) Even if your doctor thinks you have something other than Lyme disease, Lyme disease might be imitating that other condition. If you have several of these symptoms in a pattern that is unusual for you (i.e. not your normal aches and pains), it's a good idea to get tested for Lyme disease.

3) Even if you never recall a tick bite or bulls-eye rash, you could still have Lyme disease. According to the International Lyme and Associated Diseases Society, fewer than half of Lyme patients recall a tick bite, and fewer than half recall a rash.

4) If you do have an identified bulls-eye rash (Erythema migrans), then you have Lyme disease. The EM rash, as it is called, is pathognomonic of Lyme disease, meaning that it is diagnostic for that disease. If you have the bulls-eye rash, you should go ahead and get tested for Lyme to try to obtain that very helpful positive test result. However, even before your test results come in, your doctor should start you on antibiotic therapy. Even if your test is negative, an identified EM rash should make you confident that you have indeed contracted Lyme disease.

5) Remind your doctor that it can't hurt to check. Lyme disease becomes harder to treat the longer it goes untreated. Better to find it early, if you have it.

6) In my experience, I have found that nurse practitioners (NPs) are sometimes more willing to listen to my concerns and order tests that I think I should have done. If your doctor won't test you for Lyme, consider seeing a different doctor or a nurse practitioner, who might be more willing to order the test.

Lyme is all over! Consider testing if you have symptoms after spending time outdoors.
Lyme is all over! Consider testing if you have symptoms after spending time outdoors.

The Different Lyme Disease Tests

1) Lyme ELISA or IFA. Measures your antibody response to Lyme bacterium (IgM and/or IgG, different types of antibodies. IgM antibodies are formed as a first response to an infection).

2) Westerm blot. More sensitive. Shows exactly which antibodies you are producing. The IGeneX (a lab test company) version of this test is good. If you have Medicare or Medicaid, you might be able to get the IGeneX test covered by your insurance. (see: http://www.igenex.com/billing.htm).

3) Lyme Dot Blot Assay (LDA). Looks for pieces of Lyme bacteria in urine. Can be helpful for patients with Lyme symptoms who consistently test negative in the other two tests.

4) Polymerase Chain Reaction (PCR). Looks for Lyme DNA.

Your doctor probably will try the first or second tests first. He or she might mention that you can be positive for Lyme disease antibodies even if you had Lyme and got over it long ago, which is true, but nonetheless your results should be interpreted in light of your current symptoms.

If you have a Western blot test done, ask for the information about exactly which "bands" showed up in the test. Your bands might show a positive result for Lyme even if the lab doesn't list it as a positive result according to CDC Lyme reporting criteria.

If Your Doctor Orders the Test

Make sure your doctor (or other healthcare provider) understands that you are doing the test in an attempt to obtain a positive result, rather than to rule out Lyme disease. Since people can test negative for Lyme disease even when they have it (see my hub on Why You Can Have Lyme Disease Even If You Test Negative), a negative Lyme disease test, especially a first-line one, should never be used to "rule out" Lyme disease.

Ultimately, many Lyme disease diagnoses are based on clinical symptoms or responses to treatment (i.e. patient responds well to Lyme disease treatment).

When to Take the Test(s)

1) If you are planning to start taking antibiotics, try to take the test beforehand. Once you start antibiotics, you might have less of a measurable immune response to Lyme disease (which is what the Western blot and ELISA tests measure).

2) If you have a bulls-eye rash, take the test as soon as possible, and start the on antibiotic treatment prescribed by your health practitioner.

3) If you previously tested negative, think about getting tested again 3-6 or more weeks after likely exposure, since it can take a few weeks for the body to mount a measurable level of antibodies.

If You Get a Positive Test Result

1) Celebrate! In our test-obsessed medical system, a positive test result means a lot. Although antibodies alone do not constitute a diagnosis, the combination of your symptoms, exposure, and test result might do so.

2) Frame the result and put it on your wall. (Lyme patients joke about doing this.)

3) Make sure that you send copies of your results to any subsequent doctors that you see for Lyme-related concerns.

4) Consider that you might have additional tick- or insect-borne infections (see my post on Lyme coinfections, as they are called).

If You Get a Negative Test Result

1) Think about trying the test again later. If you were tested in the first few weeks after possibly contracting Lyme, you might become positive in a few more weeks when your body starts making more antibodies. Alternately, if you have had Lyme disease for a while, your immune system might be suppressed, and you might obtain a positive test result only after treating the Lyme to the point that your immune response kicks in again.

2) Consider finding a Lyme-literate doctor (LLMD or LLND, if he or she is a naturopathic doctor). He or she might have you tested by IGeneX, Inc., which performs state-of-the-art tests for Lyme disease, or with a PCR test or LDA test (see above), which can detect Lyme disease in people who test negative for Lyme antibodies. 

3) Remember that you still could have Lyme disease despite a negative result, and keep looking for answers. Although you might realize that your symptoms are more indicative of something other than Lyme, it's better to be safe than sorry with this intractable disease.

4) Many tick-borne infections have symptoms similar to those of Lyme disease. Read up on the symptoms of the other tick-borne infections (such as Bartonella, Babesia, Ehrlichia, STARI, and Rocky Mountain Spotted Fever) and consider whether you might have one of these infections. 

Adult female tick - Ixodes rincus. From www.stockxpert.com.
Adult female tick - Ixodes rincus. From www.stockxpert.com.

In Conclusion

It's unfortunate if you are having symptoms that suggest Lyme disease. I encourage you to keep trying to discern what's causing your symptoms (and there might be more than one answer).

You have much more knowledge of your own body than a doctor ever could, since you've lived in your body for your whole lifetime while your doctor has not. Thus, if something seems wrong to you, keep looking until you figure out what's going on and what you can do about it. Good luck!  

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Comments 8 comments

AJHargrove profile image

AJHargrove 7 years ago from USA

I was lucky enough to find a doctor who tested me for lyme before I even knew when it was. Unfortunately, I moved and lost convenient access to that doc. But they DO exist, I am pleased to report. :)


oncebitten2xshy profile image

oncebitten2xshy 7 years ago from Somerville, MA

Thanks for providing this wealth of information.

I would like to emphasize that the very first step when lyme is suspected is to find a lyme-literate doctor.

If a person has a savvy PCP that's a bonus.

Lyme is the causitive agent in other diseases & syndromes too (i.e. my favorite red flag--thyroid disease).

Please take negative results with a grain of salt.

It may save you frustration, quality of life and life itself.

The accuracy of tests is deplorable. Lyme is a clinical diagnosis (based on exposure + symptoms) for a reason.

Conventional testing: 46% sensitivity

Alternative labs: 75-78% sensitivity

For Tests to be considered Useful and "accurate" diagnostically, the sensitivity must be 95% or better.

A prevalent misconception is that those who have contracted LD will test positive a few weeks post-exposure; and, in addition, and in particular that “chronic lyme patients will always test positive”. This is bogus.

I have not tested positive according to the criteria of conventional or alternative (IgeneX) labs (sure, a couple western blot bands are positive and very lyme-specific).

Yet I have Neuroborreliosis (and bartonella) and am chronically ill. I do not have the arthritis (tender mercies) that is typically associated with lyme disease and never had the so-called classic (bull's eye) rash.

My sister is disabled from LD, and despite testing Negative this year she broke out in bull's eye rashes, for the first time ever, while on IV antibiotics.

Enough research has not been done.

There are 100 strains of lyme in the U.S. and 300 worldwide.

Most of the testing looks for antibodies of one, or at best 2, strains.

Lyme CAUSES varied symptoms and syndromes that affect every system in the body.

It has a special affinity toward taking out the thyroid gland, it seems. Thyroid disease, something else that is also best diagnosed clinically.

Education and awareness are key. What the general public regards as common symptoms for lyme disease are not the most common ones among patients. Risk of exposure is everywhere. I and others have been bitten right in the city (Boston, Somerville/Cambridge).

It being a suburban disease or disease of the woods or outdoors person is a fallacy.

Anyway, considering the morass that is the medical political climate surrounding this disease, definitely frame your positive ELISA and western blots.

Right now, for those who aren’t wealthy, these positive tests are your ticket to insured treatment (maybe 28 days or 2 months at best)—that is at least a bit longer than those of us without the much-coveted "positives".

I’m sorry for taking up so much space here. I’ll get off my soapbox now. Thanks.

Cheers.


cmany profile image

cmany 6 years ago from Colorado

Oh - and about testing...some doctors will retest after a short run of treatment - and many times the labs will come back negative and they will say, "You are CURED there is no more Lyme in your body."

This is probably one of THE BIGGEST lines of bull a doctor could feed you. There is NO test that can accurately and definitively tell you this...

I have had Lyme for nearly 30 years, and was never able to test positive via ELISA or WB - I had to take an alt route - to find that my CNS, Brain, muscles and joints are riddled with Borellia, bartonella, babesia, and reactivated HHV6...and later it landed in my digestive system...mimicking Celiac disease...

Once we learned all of that - formulating a treatment plan that worked better was much easier...

Oh and the line about "Lyme isn't in this State..." Common sense says this...ticks and other biting insects are not picky - if it is warm blooded it is fair game. Animals do not know boundaries...they cross from state to state whether the walk, run, or fly...and they bring the disease and the disease carrying insects with them...now as for the ignorant doc who says this...just ask them if they are part of the "Secret border patrol that captures all animals crossing the border, and brush them free of ticks and other insects...Oh and do they treat them to be sure they dont have the disease(s)..."

Tell them they sound foolish and ignorant...the more the docs hear this, eventually their egos will falter...

Sorry for the rant..


Little Nell 6 years ago

My husband has disabling joint pains and has not been able to work for two years. Though Lyme Disease is know to occur in our area and my husband has had many tick bites (we are sheep farmers) and deer visit our fields, our doctor says it is impossible to have long term health problems from Lyme, and will not prescribe doxycycline. Badgered her into taking blood for a test but the lab lost it .... What do we do?!!!


WordCrafter09 profile image

WordCrafter09 6 years ago from New England

My niece was just diagnosed with Lyme Disease. She's having terrible head pain, that she originally thought was a migraine. I've linked to your Hub because I think it's good for people to get the word out about Lyme Disease. For me, it's one of those things we tend to think we know quite a bit about, until someone close is diagnosed with it and has symptoms we didn't know were associated with it.


Katy4dad 6 years ago

I landed on this site because it occurred to me to look for lyme disease symptopms. I have been "sick" (headaches, dizziness, vertigo, nausea) for a couple weeks now. During the last month, I've woken up several nights because my legs hurt SO BAD!

I started questioning why I would feel so stiff when I got up from the bed, and I have had a stiff neck for weeks. (I thought it was because the dogs sleep in my back, under my head, and anywhere else they can cram their bodies into me).

Then I remembered the tick that was on my scalp! I had to pull him off and a part was still stuck. I didn't know I should have kept him. I wish I had now.

I live in a small town, rural, and have doubtful doctors around here. I had to go out of town to find a doctor that finally found A Fib as the cause of my dizziness before and my palpitations (which is what I thought THESE dizzy spells and chest spasms were from).

But I have a new Nurse/Practitioner for other things, that I'm sure will listen and have tests done, however, I'm just not sure how serious this will be taken in our small community. I've been recently layed off as well, so having several tests run is going to be costly, I'm sure.

All the posts here have been helpful. I have to make that appointment.

Any thing else you might think will be helpful from what you read in my post, would be greatfully appreciated.

Katy


lifewellspoken profile image

lifewellspoken 5 years ago from Vancouver BC

You have some amazing knowledge, thank thank you thank you


ap54 4 years ago

I'm searching tonight because I can't stand the joint pain anymore. I've been to many deer tick areas over the past 2 years. I experienced the headaches, but they have gone away. I was diagnosed with Bell's Palsy, until the paralysis moved from one side of my face to the other. My dermatologist treated me for a ringed rash that he said was rosea. I feel like I have the flu without other flu like symptoms all the time. My doctor sent me to an orthopedic doctor who has me in physical therapy, but I'm getting worse. Your site is the first time I have felt any valedation for my symptoms. Thank you.

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