Lyme disease is not always simple to treat effectively

Two major sets of guidelines stand opposed. IDSA (Infectious Diseases Society of America) holds that two to four weeks of antibiotics is sufficient and that remaining symptoms are not ongoing infection. ILADS (International Lyme and Associated Diseases Society) holds that persistent infection occurs and that extended treatment can be justified. The scientific basis for persistence has been strengthened by animal studies (Embers, Hodzic) and in vitro data on persister cells and biofilm (Sapi, Feng & Zhang).

Yes. Embers et al. (PLoS ONE 2012, 2017) showed live Borrelia in rhesus macaques after doxycycline and ceftriaxone treatment. Hodzic et al. (AAC 2008; PLoS ONE 2014) showed the same in mice. In vitro work by Sapi and Feng/Zhang shows that the spirochete forms biofilm and persister cells that tolerate standard antibiotics.

A co-infection is another pathogen transmitted at the same time as Borrelia, usually through the same tick bite. The most common ones in the UK and Europe are Babesia, Anaplasma, Bartonella, Rickettsia, Mycoplasma and TBE virus. Co-infections worsen the course of illness, complicate diagnosis and can require different medicines from those used against Borrelia.

Standard tests (ELISA + Western blot) measure antibodies, not the bacterium itself. The antibody response can fail to appear in early infection, under significant immunosuppression, or when the bacterium hides intracellularly or in biofilm. CDC's own data put the sensitivity of two-tier testing at only around 30–40% in early infection. Importantly: there is currently only one test that directly demonstrates living Borrelia bacteria — the DualDur test. PCR and antigen tests are NOT direct tests; they detect DNA fragments and protein markers respectively, which can remain after the bacterium has died. Since it is living spirochetes that cause and sustain Lyme infection, this is a decisive difference when assessing active disease.

The most common are: persistent fatigue, migrating muscle and joint pain, disturbed sleep, cognitive dysfunction, sound and light sensitivity, palpitations/POTS, peripheral neuropathy, mood swings, headaches and bouts of fever. Symptoms typically fluctuate and come in flares.

UK guidance follows NICE and advises against long-term antibiotics. This means many patients with lingering symptoms are not offered further investigation or treatment on the NHS, and turn instead to private clinics in Germany, the USA or Belgium. Many also choose to use natural supplements to strengthen the body and counter the infections — where a great many report very good results in symptom reduction and a clear fall in infection markers.

Research indicates that combination treatment is more effective than monotherapy. Horowitz & Freeman (Int J Gen Med 2019) showed improvement with dapsone + doxycycline + rifampin. Other protocols include macrolides + hydroxychloroquine (against cyst forms), tinidazole/metronidazole (against biofilm), and treatment of co-infections with atovaquone-azithromycin (babesia) or rifampin (bartonella). Herbs and supplements are used with very good results according to many clinicians abroad (including Horowitz, Buhner, Schweig, Klinghardt) — often as a complement to, or replacement for, antibiotics in patients for whom standard treatment is not enough. Several in vitro studies from Johns Hopkins and Columbia support this: Feng J, Leone J, Schweig S, et al. (Front Med 2020, PMID 32154254) showed that Cryptolepis sanguinolenta, Polygonum cuspidatum (Japanese knotweed), Scutellaria baicalensis (Chinese skullcap), Artemisia annua, Juglans nigra (black walnut) and Uncaria tomentosa (cat's claw) have strong activity against both growing and persistent Borrelia burgdorferi. Goc A, Niedzwiecki A, Rath M (J Appl Microbiol 2015, PMID 26457476) showed that baicalein, monolaurin and rosmarinic acid inhibit both spirochetes and cyst forms. Feng J et al. (Antibiotics 2018, PMID 30332754) identified essential oils, including garlic and others, with strong activity against stationary-phase Borrelia. Against Babesia: the Zhang Y group (Front Cell Infect Microbiol 2021, PMID 33763384) showed that Cryptolepis sanguinolenta, Artemisia annua, Scutellaria baicalensis and Polygonum cuspidatum kill Babesia duncani as effectively as standard drugs; Goo YK et al. (Parasitol Int 2010, PMID 20541037) confirm that artesunate (from Artemisia annua) is effective against Babesia in vivo. Against Bartonella: Ma X et al. (Infect Microbes Dis 2021, DOI 10.1097/IM9.0000000000000069) identified Cryptolepis sanguinolenta, Juglans nigra and several other botanicals with activity against stationary-phase Bartonella henselae. It is also important to consider other infections that can affect recovery — chronic parasitic infections (e.g. Giardia, Blastocystis, intestinal worms) cause malabsorption and nutrient deficiency (iron, B12, vitamin D, magnesium, zinc), which can prolong recovery, weaken immunity and worsen symptoms such as fatigue, muscle pain and cognitive dysfunction. Candida/dysbiosis, viral reactivation (EBV, HHV-6) and mould toxins (CIRS) should also be investigated in patients who do not recover as expected. All treatment should be managed by a doctor experienced in tick-borne infections.

Persister cells are a subpopulation of bacteria that enter a dormant, metabolically slow state in which antibiotics acting on cell division lose their effect. Biofilm is an extracellular matrix that protects bacteria from both the immune system and medicines. Both mechanisms are well documented in B. burgdorferi (Sapi 2012; Feng et al. 2014) and explain why short courses of antibiotics can fail.

Transmission occurs mainly via tick bites. Research data on sexual transmission are limited, but Middelveen et al. (2018, PMID 29662016) reported Borrelia in genital secretions. Congenital transmission from mother to child has been documented in case reports but is considered uncommon.

There are no studies on specific 'Lyme diets'. There is, however, evidence that an anti-inflammatory diet, optimised vitamin D status, sleep and pacing (energy management) reduce symptom burden in chronic inflammatory conditions. It does not replace antimicrobial treatment in active infection.

A negative antibody test does not rule out infection. The CDC, ECDC and several independent meta-analyses (Cook & Puri 2016, Waddell et al. 2016) report sensitivity at 30–60% depending on disease stage and test method. Clinical assessment carries more weight than a single result.

The CDC does not use the term 'chronic Lyme disease' but the concept of Post-Treatment Lyme Disease Syndrome (PTLDS). It defines PTLDS as persisting symptoms (fatigue, pain, joint/muscle aches, cognitive complaints) lasting more than 6 months after completing the recommended antibiotic treatment for a confirmed Lyme infection. The CDC states that 5–10% (some studies up to 20%) are affected and stresses that the cause is unknown — while advising against long-term antibiotics, citing the Klempner, Krupp and Berende trials.

IDSA (Infectious Diseases Society of America) bases its guidelines chiefly on four RCTs (Klempner 2001, Krupp 2003, Fallon 2008, Berende 2016) and concludes that 2–4 weeks of antibiotics is enough. ILADS (International Lyme and Associated Diseases Society) conducts a broader evidence review (Cameron 2014, PMID 25077519) that includes animal studies on persistence (Embers, Hodzic) and in vitro data on persister cells (Sapi, Feng), and concludes that individualised, often extended treatment is justified. Both are published in peer-reviewed journals — the debate is about how the evidence is weighted.

Yes. Adams et al. (Pediatrics 1994; PMID 8036071) and Tager et al. (J Neuropsychiatry Clin Neurosci 2001; PMID 11748319) document persisting neurocognitive and physical symptoms in children after treatment. Studies from the Czech Republic and Germany show that 10–25% of children with neuroborreliosis have long-lasting residual symptoms. Diagnosis is even harder in children, as symptoms are easily misread as ADHD, chronic fatigue or psychosomatic illness.

The Jarisch-Herxheimer reaction (rapid worsening at the start of treatment due to bacterial lysis and cytokine release) is well documented in spirochetal diseases (syphilis, Lyme, leptospirosis). Maloy et al. and several ILADS protocols describe Herxheimer-like reactions as an indirect indicator of active Lyme infection at the start of treatment. It is managed with slow dose escalation, anti-inflammatory support and hydration.

PTLDS (the CDC definition) requires documented, treated Lyme disease plus symptoms lasting more than 6 months with no other explanation — and assumes the infection has been cleared. 'Chronic Lyme disease' (the ILADS / Horowitz model) is a broader concept covering both PTLDS and patients in whom active persistent infection is assumed to be ongoing, as well as patients without a previously confirmed diagnosis but with a clinical picture consistent with chronic tick-borne multisystem infection (often including co-infections).

A review by Miklossy (J Neuroinflammation 2011; PMID 21816039) discusses evidence of Borrelia DNA and biofilm in brain tissue from Alzheimer's patients. The exact causal role is disputed, but several case-control studies show an association between chronic neuroborreliosis and neurodegenerative change. Similar hypotheses are being examined for ALS and MS, though with weaker evidence.

Babesia is probably considerably more common in Europe than previously thought.
A recent study from southern Sweden found that 16 per cent of people infected with Borrelia also had antibodies against Babesia. See link:

https://lakartidningen.se/vetenskap/babesia-infektion-kan-vara-vanligare-i-sverige-an-vi-tidigare-trott/

The results suggest that Babesia may be more common than we have assumed and should receive more attention.
The parasite is spread as a zoonosis by the same tick as Borrelia (Ixodes ricinus), which is widespread across the UK. Human cases are probably heavily underdiagnosed, because the symptoms resemble Lyme disease, influenza and malaria, and because routine diagnostics (blood smear, PCR, serology) are rarely requested. Antimalarial drugs are being trialled for babesia treatment in several countries. (Note — the DualDur co-infection test analyses for Babesia, and if it is found you also receive photographic evidence as part of the result report from the DualDur laboratory.)

Yes — but only one. The DualDur test is currently the only commercially available test that directly demonstrates living Borrelia spirochetes in blood. Standard serology (ELISA, Western blot) measures antibodies and says nothing about whether the infection is active. PCR and antigen tests are not direct tests for living bacteria — they detect DNA fragments and protein markers respectively, which can remain in the body even after the bacteria have died. This is a decisive distinction: it is living Borrelia bacteria that cause and sustain the infection, so a direct test for living spirochetes is the only thing that can actually confirm an ongoing, active infection.

With the DualDur method you can demonstrate an active Lyme infection — that is, establish that living Borrelia bacteria are in the blood at the time of testing. That in itself does not mean the infection is chronic, only that it is active at that moment. If living Borrelia can still be detected after completed antibiotic treatment — and symptoms persist — it may mean alternative treatments should be considered. If no living bacteria can be detected but symptoms still persist, you should look for other potential underlying infections that can produce a similar picture, such as Bartonella, Babesia, Anaplasma, Ehrlichia and Mycoplasma — as well as other factors such as parasitic infections, viral reactivation (EBV, HHV-6) or mould toxins.