How do I know if I have Lyme Disease?
This is a common question I get from patients and other practitioners I’m training.
The truth is that outside of a few specific examples which we’ll cover here, it can be difficult to get a concrete diagnosis for Lyme. I know, not what you were hoping to hear. But even if the diagnosis is difficult to obtain, there may still be strong hope for complete recovery. Please read on and contact us with your questions.
Acute exposure with certainty
If you find a tick bite, you develop an erythema migrans rash (aka target lesion or bull’s-eye rash), and you get flu-like symptoms without any respiratory involvement (fever, malaise, joint pain, especially one-sided knee pain, digestive upset especially diarrhea), you can bet you’ve got acute Lyme disease. We call this a clinical diagnosis. No testing is generally necessary and it’s best to begin treatment as quickly as possible.
As terrible as it sounds, if you’re going to get Lyme this is the best-case scenario because your diagnosis is clear and the treatment is simple. Go to your primary care provider and get on a 21-day course of antibiotics. Finish the course. Get lots of sleep, reduce your stress level for this period of time, and take generally good care of yourself — eat healthy, simple foods, get gentle exercise, surround yourself with your closest friends and family.
Like most medicine this treatment isn’t perfect, and the antibiotics can be rough, but it’s very effective for acute Lyme and if it can save you from requiring long-term treatment to put chronic Lyme in remission it’s probably worth the discomfort. If the antibiotics are really messing with your system, or afterwards you just don’t feel like yourself quite yet, seek help from a skilled Chinese medical herbalist. You can also take Chinese herbal medicine at the same time as the antibiotics and there is some evidence that this makes the antibiotics more effective — multiple vectors of antimicrobial action reduce the likelihood of antibiotic resistance and adaptive behavior by infectious agents; herbs can effectively dissolve biofilms and make it harder for the bacteria to “hide;” and many Chinese herbs and formulas are neuroprotective and can help prevent Borrelia from entering the central nervous system where antibiotics are less likely to work. (1) (2)
When the course of antibiotics is completed, you’ll likely — but not always — be cured of Lyme. If the symptoms persist, see a practitioner who knows how to treat your presentation and understands your history; with luck and a little time you’ll be yourself again.
Acute exposure without certainty
Two possibilities here: either you find a tick bite but have no signs or symptoms of infection, or you have an erythema migrans rash and flu-like symptoms without respiratory involvement, but you never found a tick.
If you’re in the first scenario: conservative measures are best. Not all ticks carry Borrelia, the bacteria that causes Lyme, and although there are reports to the contrary in most cases of Lyme disease the tick must be on the body for 24 hours to transmit Borrelia. Coinfections which are also transmitted by ticks may not take quite as long but in the absence of Borrelia they are much simpler to treat and may not cause health concerns as severe.
You can send the tick off to a lab to have it tested for Borrelia, but again if it was not on your body for 24 hours it’s less likely that would have been transmitted to you.
If you’re in the second scenario: first ask yourself what you’ve been doing in the last week. Have you been anywhere that a tick bite is likely — Hiking? Camping? Gardening? Have you been in any grassy areas, especially areas where tall grasses are on the edge of a wooded area? Ticks, especially in their nymph stage (the most likely stage of life for them to carry Borrelia), can be incredibly hard to detect as they are only 2mm in size, smaller than a poppy seed.
Lab testing for Lyme disease is not yet a mature science. You can get an IGM Western Blot test from your primary care provider but these are not 100% accurate and have a high rate of false negative findings. Nonetheless, if you’re showing all of the symptoms of an acute infection and you’ve recently been spending a lot of time outdoors, there is a good chance you’ve contracted Borrelia and should take appropriate measures. A 21-day course of antibiotics may not be inappropriate and it’s worth having a conversation with your primary care provider to see if that’s right for you. If you’re averse to using antibiotics, especially without a concrete diagnosis, you can use constitutionally appropriate Chinese Herbal medicine. Make an appointment with an experienced practitioner and there is a good chance you’ll get out of things okay.
Chronic exposure with certainty
If you recall a tick bite, an erythema migrans rash, and you now have symptoms of chronic Lyme disease or “Post Lyme Disease Syndrome” (the accuracy and use of these terms is hotly debated), you almost certainly have had exposure in the past which is now causing your symptoms. This must be treated by a skilled professional. Many “Lyme-literate” physicians will utilize prolonged cocktails of multiple rotating antibiotics despite evidence contrary to the efficacy of such methods and the harsh side-effects they have on the body. Treating these cases as Gu syndrome as outlined by my mentor Heiner Fruehauf is largely effective, though it can take a considerable amount of time. Consult a practitioner with training and experience in this area please.
Chronic exposure without certainty
This is again an area in which the science of biomedical diagnosis is not yet mature. Many tests are available which claim to have differing degrees of accuracy but only a few are actually helpful. I’ll outline those here:
IGG Western Blot: 5 positive bands are required to report a case of Lyme to public health authorities. In my clinical experience, this threshold is too high and ignores many cases of persistent infection. If patients present with history and symptoms of likely exposure to Borrelia and confections, and have even one positive band on this test, I generally recommend an initial course of diagnostic treatment with Chinese herbal medicine. The risks involved with treatment are low and if the symptoms improve or a Herxheimer-like reaction appears, we can make a clinical diagnosis of chronic Lyme disease.
CD57: The utility of this test is somewhat controversial. The CD57 test is not specific to Lyme as there are other possible reasons that a count on this test could be low. However, as Gu treatment is not specific to Lyme either, I find that having patients get this test at the beginning of treatment can be helpful so they can see an objective measurement of improvement as they heal.
A note on ordering labs: In the state of Oregon my license does not permit me to order labs on behalf of my patients; so I always refer to other types of providers who can do this. Some patients have found ways to order labs themselves; I recommend going through a licensed provider who can help you interpret the test results.
If you are in this category this can be a frustrating and nebulous affair. Many patients with symptoms but no clear diagnosis have a difficult time finding effective treatment and bounce from provider to provider looking for answers. Making sense of the different attitudes towards the existence of chronic Lyme disease, the diagnostic criteria required to name it as such and the treatment methodology can be daunting and exhausting.
I hope these guidelines are helpful. As a piece of commentary I will add that the vast majority of patients with chronic Lyme I treat have a clinical diagnosis. They are either in category 3 from above (tick bite with rash) but did not receive treatment with antibiotics timely enough for it to be effective or were not treated at all, or in category 4: chronic insidious onset of complex and changing symptoms which wax and wane but become worse over time and are hard to diagnose but show a positive response to treatment as Gu syndrome.
One final word on coinfections: Lyme is considered a “polymicrobial” disease — it is a syndrome tied particularly to different strains of Borrelia but also frequently involves other bacteria, molds, viruses and even parasites. Extensive (and expensive) testing can be done to identify the specific microbes involved in each patients’ case; many of these tests are also not mature in their accuracty and speaking from clinical experience once we have a diagnosis of Borrelia and begin treating as Gu syndrome, we always assume the presence of multiple different infectious agents and treat the patient as such.
If you have questions about the information presented in this blog post please contact my office.