Many people have the experience of falling into a chronic illness following a known Tick Bite/s although Only 40-50% of patients can recall a tick bite. (1)
Not everyone gets a Bulls Eye or Erythema Migrans rash although it is diagnostic of Lyme Disease, erythema migrans - may be absent in up to 30% of cases (1)
The usual NHS tests used for Borrelia ( Lyme Disease) are two tier antibody tests, there are acknowledged limitations to these tests. (2)
a) indirect - measure of immune response and not current infection
b) do not include all known species or strains
c) dependent on a person's immune response antibiotics, steroids or immune problems can affect response.
d) Undulatory immune response can affect test results.
e) Interpretation of bands and actual bands reported on.
There are better testing methods that are sometimes used in a research situation, proteomics (3) and several blood microscopy and culture methods described which could be researched further and utilised in the UK. (4)
Ticks are known to carry a soup of microbes (5) many of which are known to cause human health problems there is no research into the synergistic way these infections can work once infecting the human host.
Testing is limited for Tick borne infections and may not be sufficiently sensitive for different strains of Babesia, Bartonella as well as Borrelia. (6)
Without good testing then clinical diagnosis is what we are left with. Currently there is little experience within the NHS to diagnose a late or chronic stage of Lyme Disease using a clinical diagnosis - most NHS doctors dismiss Chronic Lyme disease out of hand due to historic misinformation (7) - current guidance was found to have many uncertainties by James Lind Alliance research - Dept of Health and HPA(PHE) over saw that research. (8)
Science moves on but medicine is slow to acknowledge change and patients suffer.
CDC are at last discussing persistence of Borrelia - (9)
Dr Stephen Barthold NIH researcher of 25 years with Borrelia in animals says '100% of animals remain infected after antibiotics - Borrelia persists as the rule not the norm' (10)
Many studies acknowledge persistence of Borrelia in humans. (11)
Johns Hopkins recently studied Borrelia persistence in vitro using standard FDA drugs (12) - about 70% persister cells found after antibiotics used for treating Lyme Disease. (13)
One huge stumbling block to treating patients on longer courses of antibiotics is attitude and concerns over antibiotic resistance. However this needs to be considered more carefully in the light of Prof Kim Lewis work. He believes the problem is not resistance but persistence and has researched E Coli, MRSA, TB and Pseudonyms finding a compound that helps deal with the persister cells. His three videos are very informative. (14 )
Prof Lewis has been given a grant to research into persister cells in Borrelia he has already found that the compound that works with MRSA does not work on Borrelia persisters. (15)
I saw doctors with Bites Erythema Migrans rashes, Summer flu, migrating arthralgias and yet it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. As my health deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica - a chance course of antibiotics improved my symptoms of joint pain and muscle weakness and led GP to consider Lyme Disease ( there had been other cases infected locally) my records confirmed my history. My NHS and private tests were negative but I'd been given 20 months of steroids for wrong diagnosis as well as antibiotics both could have skewed the test results. With the help of a private doctor and an open minded GP I was treated empirically on many many months of antibiotics - my GP could see my response and recovery on antibiotics and decline when antibiotics stopped. I had been retired early on ill health grounds from the Civil Service, at my worst I struggled to raise from a chair or walk across a room I was unable to climb up or down stairs properly for 3 1/2 years now I am much recovered and can climb stairs, cycle and live a normal pain free life.
I was fortunate.
In the light of so many uncertainties and lack of adequate testing, patients who are sick and need help now read the research papers and some are fortunate to get treatment. However the vast majority are refused antibiotics by NHS doctors based on misinformation. If antibiotics are found to help improve the patients condition then doctors could treat empirically informing the patient of the possible adverse effects. Patients should be allowed choices in their care.
(10) US Congressional Hearing on Lyme Disease -Dr Barthold at 53 mins in
(11) a- Phillips, S. (2012). Active infection: Clinical definitions and evidence of persistence in Lyme disease- Contesting the underlying basis for treatment limitations for early and late Lyme disease, as well as chronic Lyme disease, alternatively known as “Post-Lyme disease syndrome.”
b- Barbour, A. (2012). Remains of Infection. Journal of Clinical Investigation, 122(7), 2344-2346.
c- Lin, X., McHugh, A., Damle, N., Sikand, V., Glickstein, L., Steere, A. (2011). Burden and viability of Borrelia burgdorferi in skin and joints of patients with Erythema migrans or Lyme arthritis. Arthritis and Rheumatism, 63(8),2238-2247.
d- Schmidli, J., Hunzicker, T., Moesli, P. (1988). Cultivation of Borrelia burgdorferi from joint fluid three months after treatment of facial palsy
due to Lyme borreliosis. Journal of Infectious Diseases, 158, 905-906.
e- Haupl, T., Hahn, G., Rittig, M., Krause, A., Schoerner, C., Schonherr, U., … Burmester, G. (1993). Persistence of B. burgdorferi in ligamentous tissue from a patient with chronic Lyme borreliosis. Arthritis and Rheumatism, 36, 1621-1626.
f- List of studies on Lyme policy wonk http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-persistence-personified-in-lyme-disease-those-pesky-human-cases.html
(14) a. The Paradox of Chronic Infections
b.The Principles of antibiotic Discovery
c.Uncultured Bacteria https://www.youtube.com/watch?v=-ojRvlwanSA