If you find yourself in the waiting room of a rheumatologist, you’re likely there because your joints hurt and have been hurting, often for years. You’ve been getting by on aspirin or Advil for the pain, but with things worsening your primary care doctor suggests you should see a joint specialist, a rheumatologist. And because there’s a shortage of physicians in this specialty, your appointment might have taken weeks or even months to arrange.
Once you’re in you’ll quickly discover that rheumatologists like to order blood tests. After they take more samples than you knew you had blood, you’ll get a return appointment to review the results.
But let’s back up. During your initial visit (obviously before any tests are performed on all those blood samples) you’ll usually hear the rheumatologist’s suspected diagnosis. Two common diagnoses are both inflammatory disorders: rheumatoid arthritis (RA) and ankylosing spondylitis (AS).
RA can affect any joint but seems to attack the small joints of the hands and wrists first. AS goes for the spine initially and then moves to the larger joints (hips, shoulders). Both produce blood test results showing inflammatory markers, and sometimes these conditions have unique appearances on xrays.
Having positive test results will firm up your rheumatologist’s initial clinical impression and then she’ll probably recommend prescription medications. Since you’ve been taking anti-inflammatories on your own, she will likely start with a different form of anti-inflammatory called a DMARD (disease-modifying antirheumatic drug). DMARDs are anti-inflammatories that also slow down the progression of the disease.
DMARDs include the anti-malaria med Plaquenil, the antibiotics Minocycline or Azulfidine, and the anticancer drug Methotrexate. These drugs have a pretty high success rate but they do come with side effects, including liver damage. Your rheumatologist will want to monitor you with blood tests to check for adverse reactions.
If you don’t respond to one or more of the DMARDs as quickly as your doc expects, she may then encourage you to use one of the biologics, injectable drugs that block inflammation by acting on specific cells involved with immunity. These will work but they come at a price, literally and figuratively. Humira, for example, is $60,000 a year and side effects include increasing your susceptibility to infection and certain cancers.
To my mind, a real problem develops when you’ve got all the signs and symptoms of RA or AS, but all your tests are negative or minimally positive. You’ll be told you have “serologically negative” (also called seronegative) disease, which means it doesn’t show up on a blood test, but despite this you’ll be offered the same menu of DMARDs and biologics and little else.
Fully one third of RA and AS patients are seronegative.
I have several beefs with rheumatologists about this
It’s very likely a good percentage of seronegative RA and AS patients have undiagnosed chronic Lyme disease, whose symptoms can be identical to those of RA or AS. Many rheumatologists don’t bother to check for Lyme.
Rheumatologists never seem to recommend lifestyle or nutritional changes or order any functional medicine tests (such as for food sensitivities or leaky gut). Anyone with an autoimmune condition will find it illuminating to read The Autoimmune Solution by Amy Myers, MD, and The Wahls Protocol by Terry Wahls, MD, for substantial insight into non-prescription approaches to their condition.
It’s truly unfortunate that rheumatologists miss the irony of prescribing DMARDs because each of these drugs can be used to treat chronic Lyme. Minocycline, a drug in the tetracycline family, for example, is the mainstay drug for treating chronic Lyme. Tetracycline was first used successfully for RA in the 1960s, when it was proposed that RA might be an infection. Yes, these 60 years of DMARD use could be viewed as an inadvertent treatment of dormant infections, chronic Lyme among them.
Even rheumatologists who do check their seronegative RA and AS patients for Lyme continue to use really inefficient tests. They’ll start with an ELISA (enzyme-linked immunosorbent assay), which has a 50% false negative rate, meaning half the people who actually do have Lyme will be told their test results are negative and to forget about Lyme.
If the ELISA produces positive results, the Western blot (WB) test is next, and it isn’t much better. This is a blood test that determines if your immune system has created antibodies against the Lyme bacteria (Borrelia burgdorferi). Each band that appears in the test results means one antibody has been created against B. burgdorferi. The Centers for Disease Control has decided you need five bands in order to be diagnosed with Lyme.
Common sense would dictate that if you don’t have Lyme, no bands should appear on your test results, but given that five bands is the government standard, if you have four bands–even if you have all the symptoms of Lyme—you’re given a negative test result. Take a look at a picture of this test. To the left, columns 1 and 2 are controls, one positive (lots of bands) and one negative (none). The other columns are actual patient samples. Columns 5 and 9 are positive for Lyme, but what about 8 and 11?
Virtually all rheumatologists are unaware of the best Lyme test now available, the EliSpot, developed in Germany. Until a few months ago, we had to send our specimens overseas, but now they’ve opened a lab in Minnesota. The EliSpot is too complicated for a Health Tip, but you can read about it on their website.
No, wait, there’s one more
Rheumatologists are far too quick to prescribe biologics. Since all biologics work by suppressing immunity, if you read the package insert the top contraindication is the presence of an infection. If your seronegative RA or AS is due to chronic Lyme, then a biologic can make matters worse.
Yes, biologics can work wonders for certain autoimmune diseases–just make sure you’ve got an autoimmune disease first.
David Edelberg, MD
PS: The Lyme Elispot by InfectoLab is $295 and not covered by insurance. Your doctor can have the kit sent to her office. She’ll draw your blood and send it in for analysis along with your payment. WholeHealth Chicago patients can call the office, scheduling a lab-only. We’ll draw your blood and mail your sample to InfectoLab along with your check or credit card number.