DISCLAIMER: Caudwell LymeCo charity shares public domain information, which it believes to be reliable, in good faith. Caudwell LymeCo does not offer medical advice. You should always seek the advice of a suitably qualified doctor with a license to practise medicine and you should not follow medical advice from an unqualified or unregistered person. If you believe any information on this website to be incorrect, you are invited to contact the charity using the Contact page.
- How is Lyme disease treated on the NHS?
- Can Lyme disease go away by itself?
- Can you recommend a Lyme disease specialist or private clinic?
- Alternative and experimental treatments
How is Lyme disease treated on the NHS?
For information on what dose your child should receive, please click on the button below.
Download: NICE / BMJ antibiotics infographic
(Link to antibiotic treatment tables in official guideline)
Doctors should warn patients that a Jarisch-Herxheimer reaction may occur. This is caused when large numbers of bacteria are dying in the body and it will make symptoms worse during treatment. Patients should contact their doctor, but should usually keep taking the antibiotics.
Doctors should consider booking a follow-up appointment during or at the end of treatment to review the patient’s progress. If the patient still has symptoms, the infection may still be present and a second course of antibiotics (a different antibiotic from the one already given) may be needed.
If the patient is not better after treatment, the doctor should consider various possibilities.
- The original diagnosis of Lyme disease may have been wrong. More tests may be necessary to look for an alternative diagnosis.
- The two courses of Lyme disease treatment may have failed to clear up the infection. Unfortunately there is no test to find out if this is the case. The doctor should not automatically prescribe more antibiotics, but can refer the patient to a specialist and/or discuss them with the National Reference Laboratory to consider other types of Lyme disease test or tests for other tick borne diseases.
- There may be symptoms resulting from tissue damage, which may heal over months or years, or may be permanent.
Additional drugs to manage symptoms and complications
Doctors should help people deal with symptoms and other effects of Lyme disease appropriately, including other medications or practical support. Many patients with long term Lyme disease symptoms are prescribed drugs to manage the symptoms of the disease, even if they are not taking antibiotics. The commonest drugs prescribed include painkillers, antidepressants and sleeping pills.
Can Lyme disease go away by itself?
Some people are found to have Lyme disease antibodies, without recalling ever having been ill with Lyme disease. When an illness goes away by itself after a while, like a cold or influenza, it is called a “self-limiting illness”. Lyme disease is not a self-limiting illness for some people, but it appears that it is for others.
There is no evidence on how many people have recovered from Lyme disease without treatment, nor a theory as to why some people do whilst others do not.
Can you recommend a Lyme disease specialist or private clinic?
Unfortunately, the NHS lacks Lyme disease specialists. One of the things we as a charity are hoping to see in the future is a “Centre of Excellence” for Lyme disease, where doctors from various disciplines see higher number of Lyme disease patients and start building up clinical experience.
On the NHS, Lyme patients in the UK are generally seen by their GP, and possibly referred to consultants in various disciplines (infectious diseases, rheumatologists, neurologists etc)., depending on their overriding symptoms. If your GP needs help finding someone, he or she may wish to phone the National Reference Laboratory (the Rare and Imported Pathogens Lab) as their experts are well networked and may be the best positioned to suggest a suitable consultant.
Caudwell LymeCo is not able to recommend individual doctors who treat Lyme disease privately, nor doctors who use treatments outside those recommended by the NHS. This is because there is no way we can predict what the outcome will be for any patient. There is currently a completely unsatisfactory situation whereby we know that the so-called “standard” treatments fail to cure lots of patients, but we do not know what actually will cure them. Without this proof we would not be in a position to recommend any private specific clinic, doctor or treatment.
Alternative and experimental treatments
Long-term antibiotic therapy
Some doctors who treat long-term Lyme disease patients privately – most of whom work outside the UK – prescribe long term antibiotics for patients whose symptoms have not cleared up after standard courses of antibiotics. They may prescribe other drugs as well, intravenous antibiotics or combined antibiotic therapies. Treatments may last months.
These treatments are experimental, as there is a lack of published research demonstrating that such approaches are effective. There is also, however, a lack of evidence that they are not effective. This is a controversial area, amongst patients as well as doctors. More research is desperately needed.
Antimicrobial herbal therapy
Some patients, with persistent symptoms after standard treatment with antibiotics, take herbal remedies.
Commonly used antibacterial protocols for Lyme disease include:
- Cowden Protocol, claimed to be based on herbs from the rainforst used by native Americans to treat Lyme disease for generations
- Buhner Protocol, developed by a herbalist who has experimented with his own protocol for Lyme and co-infections
- Lyme Plus Protocol, developed in Europe by a clinic and university researchers, claimed to target European strains of Lyme and several co-infections.
Some patients with persistent Lyme disease symptoms take nutritional supplements. These are intended to support their immune systems and ease various symptoms but not to cure the infection. Some nutrients commonly taken include magnesium, vitamin C, vitamin B12 and all the B vitamins.
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