Frequently Asked Questions About Lyme Disease
Gilian Crowther MA (Oxon), FBANT, mNNA, CHNC reg. is a naturopath and nutritional therapist
and AONM’s Director of Research. She answers questions about Lyme Disease.
Can you provide a definition of what Lyme Disease is?
Lyme Disease is a bacterial infection that results from the bite of an infected tick – sources exist substantiating other vectors, too, such as horseflies, sand flies, mosquitos and fleas. Ticks may carry Borrelia burgdorferi, the spirochete that causes Lyme Disease, but also many other coinfections – Babesia, Bartonella, Ehrlichia, Anaplasma, to name just a few. Each has specific manifestations, which alter as the bacteria become disseminated over the body. Some specialists like Dr. Joe Burrascano, who wrote the Lyme Treatment Guidelines in the USA, refer to infection with Borrelia as “Lyme Borreliosis”, and use “Lyme Disease” to denote a broader definition that includes coinfections.
Why has it come to prominence in more recent years? Are there more cases, better testing, or just that people are more aware of it?
I think each of these points is correct.
Climate change is leading to expansion of the tick population as well as their habitat. And there is more outdoor recreation when it is warmer, which increases the risk of infection. Suburbanisation and reforestation are additional factors.
Underreporting has always been a big problem, too. In the UK, Lyme is not a notifiable disease, so official figures are far too low, but social media has broadened our awareness of Lyme Disease incomparably. Both patients and therapists are much more familiar with the symptoms, more likely to think of testing for it, and can exchange on therapeutic options so readily now.
Testing has also improved: it is well recognised that a bull’s eye rash only occurs in around a third of those infected, and the traditional two-tier antibody testing misses at least 40% of cases. The EliSpot (enzyme-linked immunosorbent spot) system of testing is now available from Germany, such as from ArminLabs, where they have a long history of taking Lyme Disease much more seriously. It uses a different arm of the immune system, and can show current cellular activity against the Borrelia antigen (and indeed most co-infections). Antibody testing has many shortcomings: the EliSpot technique is better able to detect current infection. There is now even a fully validated and accredited test that can detect the Borrelia round body form, which is a clear indicator of chronicity. As testing methods improve, the number of cases identified rises.
Is it a lifelong disease?
No, there is no need for it to be intractable for life. The question is how soon you can catch it. If addressed immediately after being bitten (Stage 1), generally with antibiotics – hopefully for long enough, and at a high enough dose – there is a good chance of overcoming it right away.
If it has moved on to Stage 2 – early disseminated disease – it may be harder to access the bacteria. They may already have burrowed into synovial tissue in the joints and other immune-privileged parts of the body where they cannot so easily be eradicated, and perhaps have surrounded themselves with biofilm as protection. Plus some may already have gone into cyst form, also called “round bodies” –much harder to detect. So you need more sophisticated strategies to attack the bacteria, while also strengthening the patient’s own ability to mount an immune response.
If the patient has harboured the bacteria for a long time, late disseminated disease is harder to resolve. This is often characterised by neurological and/or cardiac symptoms, and much more diverse, systemic complaints: dysautonomia with POTS, a debilitating energy deficit and photophobia, aphasia, anxiety. When patients have suffered for many years, with all the concomitant coinfections and opportunistic infections, a much more intensive team approach is likely to be necessary to address the damage the pathogens have wrought.
What are the most common symptoms, and what are the long-term health effects?
Lyme Disease tends to be categorised (roughly) into three stages:
Stage I: Early-stage disease
Sometimes an erythema migrans rash, and flu-like symptoms: temperature, chills and neck stiffness, joint and muscle pain, swollen lymph glands, fatigue.
Stage II: Early disseminated disease
More serious symptoms may develop if Lyme disease is left untreated or is not treated early on, as the bacteria spread to other parts of the body.
These may include (amongst many others):
Inflammation: joint pain and swelling
Neurological: e.g. tingling, numbness, neuropathy, memory problems, difficulty concentrating. The triad of meningitis, cranial neuritis and polyradiculitis is classic of neurological involvement.
Cardiac, e.g., myocarditis, pericarditis, bundle branch block, heart rhythm disturbances can occur either at this stage or later, too.
Stage III: Late disseminated disease
Later disease may be characterised by large-joint oligoarthritis (over 50% of cases), encephalopathy, peripheral polyneuropathy, aphasia/hemiplegia (rarely), and even seizures. Some patients very unfortunately find themselves in wheelchairs, unable to walk. Anxiety attacks, psychosis and hallucinations have all also been recorded.
There may of course be overlap between the different stages.
Nutritionally, what kind of programme should be recommended for someone with Lyme Disease?
Cutting out all sources of sugar is vital as elevated blood sugar hinders phagocytic ability. White blood cells need to ingest pathogenic bacteria and viruses to neutralize them, but this ability goes down dramatically when blood sugar is high. The reason is Glucose-Ascorbate-Antagonism (discovered in the ‘70s). White blood cells need an intracellular vitamin C concentration 50 times higher than in the blood plasma to handle the oxidative stress from fighting a pathogen. But the cell receptor for glucose and vitamin C is the same, insulin, and glucose is always given preference. So if you have high blood glucose, your immunity will automatically go down. A diet low in fast-acting carbohydrates therefore really makes sense.
Borrelia induce cytokine release because the resulting tissue breakdown provides them with collagen, their favourite food. So an anti-inflammatory diet is key. Borrelia also feed off our cholesterol and phospholipids, impairing cell membrane integrity, so high-quality fatty acids are vital, in the right balance (not everyone’s needs are the same – a fatty acid test is useful, and also checking for elevated Kryptopyrroles, as that is a condition often seen in Lyme patients, and frequently leads to Omega 6 deficiency).
Glutathione is our No. 1 intracellular antioxidant, without which we can’t mount an efficient immune response. Glycine, cysteine and glutamic acid are its precursors, so these amino acids are crucial. High-quality sources of protein will deliver them, but only if we have sufficient hydrochloric acid to break them down, so it’s important to check for HCl. Usually there’s a deficiency of digestive enzymes across the board. It’s to do with downregulation of the patient’s parasympathetic system responsible for digestion, because the nervous system has switched to hypervigilance. Keeping living enzymes in foods is therefore helpful – i.e., having a good proportion of your food raw.
Anti-inflammatory foods (and nutraceuticals) should help to counter the joint pain that Lyme disease often causes. Gluten and dairy are the primary culprits. An elimination diet should show whether using alternatives provides relief. Leaving out the solanacea (“Nightshade”) family can also help, especially with Rheumatoid Arthritis-type symptoms.
Eating organic is another key, as pesticides and antibiotics are a burden on an already overtaxed liver. They also impair our mitochondria, essential for restoring cellular health. Feeding our cells and mitochondria with high-quality, nutrient-dense anti-inflammatory foods plays a huge part in recovery, but there is no one-size-fits-all. Nutrition needs to be tailored to the individual, and ideally guided by testing.
And is it recommended they make any lifestyle changes?
EMFs can have a huge impact on our cells: Professor Martin Pall has extensive scientific evidence for how they alter intra- and extracellular ion exchange, weakening our immunity (and thus driving the virulence of pathogens). So shielding yourself from EMFs to the maximum extent possible is very helpful – anti-wave clothing, switching off routers/iPhones at night, using fixed lines instead of cordless phones, etc.
Household cleaning items as well as skin- and healthcare products will ideally be natural and organic to reduce all sources of toxins. Exposure to heavy metals and chemicals needs reducing to a minimum, too, as these are compounding factors.
Stress of any kind leads to a “Cell Danger Response” (CDR) where cells downregulate their normal metabolism. This compromises their ability to fight intracellular pathogens. Nitric oxide, triggered by iNOS, normally responsible for intracellular “gas warfare”, may be hugely upregulated and create lots of free radicals. It is essential to reduce stress on all levels to backpedal this CDR and restore full functionality. So lifestyle changes will most definitely be called for, but what they are will vary hugely depending on each individual’s circumstances.
What kind of supplement protocol could be recommended?
This will vary depending on how entrenched the bacteria are, what co-infections there are, how the Lyme Disease has manifested (whether pain, neurological/neuropsychiatric symptoms, autoimmunity, etc.), and what the perpetuating factors are. The disease may be so progressed that medical supervision is clearly essential, though this doesn’t of course rule out supplements. But in severe cases the full protocol may need to include pharmaceuticals.
Specific supplement lines have been developed for Lyme Disease and co-infections and can be very effective, but strict regulations prevent supplement companies from making disease-specific claims for their products except when training therapists, so I don’t feel it would be appropriate to simply list manufacturers’ names here. There are however excellent herbal and nutraceutical approaches based on the (science-backed) expertise of specialists such as Dr. Dietrich Klinghardt, Dr. Judy Mikovits and others, who have spent decades addressing pathogens, immune dysfunction and their manifestation in chronic disease. We are lucky to have a lot of related seminars and training available to us here in the UK.
What is the current research telling us around Lyme Disease?
All the latest research is saying you can’t just look at Borrelia burgdorferi in isolation. A recent study found that ticks transmit more pathogens than any other arthropod, and one single species can transmit a large variety of bacteria and parasites. Emerging research also underlines that what are being called bacterial “persisters” can survive antibiotics, and is showing how very effective natural remedies can be. The neuropsychiatric manifestations of Lyme Disease and related infections is another huge evolving area of research. It is now being understood how Lyme and coinfections can create autoantibodies that can penetrate the blood-brain barrier and attack neuronal targets in the brain involved in neuropsychiatric and/or motor functions. A large consortium in the USA – The PANS Research Consortium (PRC) Immunomodulatory Task Force – is involved in research into these conditions. This is so important: how many people are being consigned to a lifetime of psychotropic medications, when perhaps their condition is infection-driven? AONM is working closely with Moleculera Laboratories in the States to bring this knowledge over to the UK.