Chronic Lyme Disease
Chronic lyme disease is one of the diseases that is not only controversial, but has the ability to evoke shouting matches between physicians passionate about helping their patients on their path to healing. The conventional infectious disease establishment does not believe in chronic lyme disease being largely prevalent and causative of many cases of fibromyalgia, chronic fatigue syndrome, and various chronic muscular / joint pain syndromes. Instead, they believe that chronic lyme is simply the result of untreated acute lyme (typical erythema migrans rash) that can have neurological, cardiac, and muscuskeletal complications.
There is a very large group of physicians who believe that chronic lyme disease is much more prevalaent, and in fact may be under-diagnosed and yet causative of many difficult to treat, long standing chronic disease patients. These patients largely fall into the category of chronic fatigue syndrome, fibromyalgia, occasionally multiple sclerosis, Parkinson's, and various neuropathy related disorders. This group of physicians generally regards the International Lyme and Associated Diseases treatment protocols and information as being correct.
Lyme disease is not just a north-eastern US type of disease. I have recently been finding that in screening certain patients from my Vancouver and Richmond practice, that lyme disease testing is proving that chronic lyme may be the correct diagnosis. Again, chronic lyme disease diagnosis seems to be more common amongst conditions that have been longstanding, and yet difficult to pin down. Often times the symptoms may involve chronic nausea, fatigue, burning sensations especially of the legs and the soles of the feet, along with the more typical muscle and joint pain, exercise intolerance, and debilitating chronic fatigue.
It is controversial amongst all types of physicians. Recently an email discussion between a colleague and myself revealed that there is a large level of ignorance within the naturopathic field as well, with naturopathic physicans believing that lyme disease is simply an in-vogue "industry." Chronic lyme, and its association with chronic fatigue syndrome has been around since the 70s.
Lyme diagnosis is complex and very confusing for non-lyme literate doctors because of the multitude of tests used. In most parts or North America, including in Vancouver and Richmond, lyme diagnosis is predicated on the ELISA blood test as a screening test. This has many pitfalls, the least of which is that if positive, it has to be confirmed by an appropriate western blot test. However, there is opinion that the ELISA screening test for lyme diagnosis is less sensitive and less specific, meaning it misses more cases of lyme and gives more false positives for lyme, than the second confirmatory western blot test.
Some physicians will thus conclude that appropriate lyme diagnosis should be based upon western blot as a first test, instead of the ELISA. Unfortunately this is almost never done by conventional medicine. As a naturopathic doctor treating patients in Richmond and Vancouver, my patients pay for this test out of pocket, since it will not be covered nor typically ordered as a first test.
Lyme diagnosis is further complicated even by the western blot interpretation. The CDC has given various criteria for considering a lyme diagnosis by western blot, basically stating that you need certain antibody bands to be present. These bands are numbered for identification. Depending on the type of antibody, you need different amounts of positive bands to be present. For an IgG western blot, for example, you need 5 antibody bands to be present, excluding the 31 and 34 kda bands. For an IgM, you need 2.
These criteria are very exclusive and tend to miss many cases of lyme disease. For example, certain lyme specialty labs, such as Igenex, stipulate that two bands, including 31 and 34 kda, need to be present in IgG western blots for a lyme diagnosis. This methodology seems to catch 2/3rds of chronic lyme patients, instead of 1/3, and yet barely loses any of its specificity (ie you can be pretty sure that if positive, you do have chronic lyme). Other published criteria include those for IgG interpretration by Mavin et al, which includes multiple other bands as well as criteria for what would be considered equivocal. Zoller had also published in the 90s on a positive IFA (screening test) - and subsequent criteria such as a singly positive 41 kda. In short - conventional diagnosis involves a positive ELISA or IFA, then CDC interpretation of a confirmatory western blot. There are published criteria that contrast that method as well. Discussions with the patient about how such testing can guide treatment decisions in a patient-centred approach that looks at risk of treatment vs possible benefit can then be had with all the criteria.
Sometimes a treatment or antibiotic challenge can be used to further expose the immune system to the lyme disease germ, before antibody testing.
There are newer screening tests based on what we understand about the physiology of lyme disease, including things like subsets of molecules associated with inflammation (c3a and c4a) and decreases in specific parts of the immune system (decreases in certain NK cell activity). Lyme diagnosis is indeed complex, but definitely needs to be considered in certain complex cases, including some chronic fatigue syndrome and fibromyalgia cases. Newer areas of research include looking at cytokine signatures in lyme, but this is not available as of 2019 readily.
Treatment for lyme
Treatment for lyme may be even more complex than lyme diagnosis. Conventional treatment for lyme disease typically involves a short course of antibiotics. This may be effective for those who catch the disease early, but unfortunately the germ that causes lyme disease becomes much harder to treat as time goes on.
Drug therapy for chronic lyme typically involves different types and combinations of antibiotics when treating a resistant, or chronic case. This might start with doxicycline or amoxicillin, and if no response is seen, or if cases are very long standing, then intravenous antibiotics with agents such as ceftriaxone may be used. These agents, especially when used for long periods, are not innocuous but may be essential in the treatment for lyme. This contrasts with the conventional therapy of most often 4 weeks of doxicycline or similar in all cases of lyme, acute or long-standing.
Many patients tend to have a "herxheimer" or healing reaction during therapy, where their symptoms tend to worsen for a short period of time.
Lyme disease seems to respond most readily to a combination of conventional drug therapy, and naturopathic therapies. The naturopathic therapies absolutely can mitigate the herxheimer and healing reactions, and especially deal with the debilitating fatigue and pain that often accompanies both lyme disease itself and the treatment for lyme disease. Furthermore, the naturopathic therapies are most appropriate because certain therapies, such as ozone therapy and ultraviolet blood irradiation therapy are specific at improving oxygenation of tissues and improving immune cell activity (including NK cell activity, which is specifically suppressed in lyme). The ultraviolet blood irradiation as described in the treatment for chronic fatigue syndrome, has a direct effect on mobilizing the body's defenses to kill the lyme disease germ. Thus, during such a protocol (and it is quite intensive, requiring a time commitment from patients), naturopathic patients often feel worse during the treatment initially, as they would on antibiotic therapy.
Nutritional and holistic support as treatment for lyme can be very important as well. This includes getting a refreshing amount of sleep, appropriate nutrients including coenzyme Q10, green tea extracts, theanine, adrenal support, and especially intramuscular methyl B12. I use methyl B12 in many patients, but in treatment for lyme disease very high doses are needed, often in the range of 25 mg to 50 mg per day (consider that oral lozenges are1/10 000th that dose).
Nutrients specific for isolated symptoms are often needed, such as nutrients for neurally mediated hypotension, brain fog, joint pain (ozone injections are useful), and insomnia.
Lyme disease is not limited to the north east or other endemic areas. It should definitely be considered as a differential diagnosis in patients who have had long standing debilitating fatigue and pain, especially if there are neurological changes and if they fit the criteria for chronic fatigue syndrome or fibromyalgia.
If you think this may be a concern of yours, please call my office or email me directly to schedule an initial appointment with me. During this visit, we will discuss symptoms and history, and perform a physical and lab work as appropriate. My treatment for chronic lyme involves the protocol here as well as antibiotic therapy. Coinfections need to be identified and treated. Some patients can be treated without antibiotics as well.