Madison Area Lyme Support Group

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

How do you differentiate rheumatoid arthritis (RA) from Lyme disease?

These two diagnoses are often mixed up, since symptoms are similar. A good Lyme Literate Medical Doctor (LLMD) should be able to distinguish Lyme from rheumatoid arthritis (RA) and other conditions that Lyme can mimic, such as Chronic Fatigue Syndrome, Multiple Sclerosis (MS), and lupus. They will run specialized tests for Lyme and other tick-borne diseases, and will be able to make a clinical diagnosis.

Though both Lyme and RA can cause joint inflammation and pain, the way this pain presents can help doctors distinguish between the two. Pain from RA tends to be symmetrical; a patient might experience it in both hands, both wrists, or both knees. Conversely, Lyme pain tends to be localized and/or migratory; a patient might only have pain in one wrist, or might have an aching left elbow one day and an inflamed right knee the next.

In his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Richard I. Horowitz, MD notes, “Rheumatoid arthritis can look a lot like Lyme disease. Like lupus, it is a chronic systemic inflammatory disease that primarily affects the joints, but it also may involve inflammation in tendons, ligaments, muscle, bone, and many organs in the body. To establish a diagnosis of rheumatoid arthritis, the joint score (counting and mapping the joints involved at each visit), the presence of synovitis (inflammation in the synovial membrane surrounding the joints), and the physical exam (range of motion, presence of increased fluid in the joints, nodules, and deviations in the joints) are the focus of the criteria. We can get signs of inflammation in both diseases (including positive ANAs and rheumatoid factors), but the presence of positive anti-CCP antibodies differentiates it from Lyme disease and is a more specific marker for true rheumatoid arthritis.”

In one of your articles, you mentioned that you take medication to help you sleep. I am worried about being on an addictive sleep medication. I am happy to be able to sleep through the night now, but I struggle with the knowledge that I’m on this drug. Any advice?

I had these exact same concerns when I first started taking sleep medication more than ten years ago. I didn’t want to be on an addictive medication; I worried about long-term effects; and I wanted to be able to sleep naturally. Luckily, my doctors gave me some good advice. My LLMD reminded me that without sleep, my body could not heal from Lyme disease, babesiosis, ehrlichiosis, and chronic Epstein-Barr virus. My sleep doctor told me that Western medicine is good for a crisis situation, while Eastern medicine is good for getting at the root cause of a medical issue; both are necessary for optimal health. At my worst points of illness, I had literally been awake for weeks. That was a crisis situation that required narcotic sleep medication.

After a short period, that medication helped restore my system to a point where I could sleep with a non-addictive sleep aid. If I hadn’t taken the narcotic—which I did not become addicted to, despite my worries—I might never have gotten to that point.

The sleep medication I still take is considered non-addictive, though I’m sure I wouldn’t sleep without it. I have been on it under close supervision from my doctor for over a decade, and we have not seen any issues. I have never increased my dose. Would it be nice to be able to sleep naturally? Sure. But I’d prefer to be able to sleep at all, and if that means taking a controlled medication, then that’s what my body needs to function. My doctor calls this effective use of medication, versus abuse.

In addition to medication, I also do neurofeedback, and practice good sleep hygiene: I keep the same sleep and wake times, I shut down screens and do quieter activities before sleep, I don’t read or watch TV in bed, I keep my room quiet and dark, and I nap in the early afternoon. If you’re following good sleep hygiene and following your doctor’s recommendations for safely using medication, I think you can rest easy.

Is the CD-57 test accurate?

The CD-57 test is a marker of natural killer cells and T lymphocytes. In layman’s terms, it is a way of measuring immune function against persistent conditions such as Lyme disease. The IGeneX lab website states, “In cases of chronic diseases, including Lyme disease, the number of CD57 NK cells has been shown to be below normal.” They also recognize, though, that “the utility of this test is controversial…This test measures only the CD57 NK cells and may be useful for patients with known Lyme disease who present with chronic symptoms. If the count is low, the cause of symptoms may be from Borrelia burgdorferi. If the count is normal, the cause may still be from Lyme disease, but it could also be due to some other agent.”

I’m not a medical practitioner and I can’t give medical advice, but I can tell you about my own experience with this test. When I was first sick, my doctor ran this test often, but he was afraid I was getting too connected to the results when the real marker of whether I was getting better was how I was feeling. Since then, we haven’t tested it that often, but we have used it at critical junctures as a way to corroborate clinical evidence of relapse. The first time I thought I was in remission, my CD57 was very low (16; below 60 is considered active infection), but I felt great. Just a few months later, I completely relapsed, after a perfect storm of stress factors and no antibiotic defense enabled spirochetes to flare. The low CD57 marker, then, should have forewarned me that my body was in danger of relapse.

A decade later, I experienced another flare up of symptoms that felt closer to relapse than I’d been in a long time. Again, my CD57 was low. After some tweaks to treatment and additional rest, I started to feel better, and the number came up. So in my experience, the CD57 test has been helpful, but it isn’t a tell-all; I would not recommend using it strictly as a diagnostic tool.

For more blogs, click here

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.