Test Results:
The immunoblot (Western Blot) and Elispot tests showed no indication of the presence of Borellia Burgdorferi (Lyme). These tests are 'indirect' tests which measure a person's immune reaction to the bugs. Neither of these tests are definitive. While much more accurate that the ELISA test, the most widely used test (and also one of the least useful) for Lyme, false negatives are still known to occur.
The CD-57 NK- Cells testing looks at an immune marker that tends to be low in the presence of Lyme disease. As you can see below, my CD-57 count is quite low (55). This, again, is not conclusive and absolute evidence of Lyme disease, but evidence that it may be present. "Other illnesses, such as myalgic encephalomyelitis (chronic fatigue syndrome), rheumatoid arthritis or multiple sclerosis might mimic Lyme, but those illnesses will not cause a drop in the CD-57" (McFadzean, 2012).
Diagnosis:
While these tests may be very helpful in doctors diagnosing Lyme disease, Lyme is primarily a clinical diagnosis. "Many cases of Lyme disease are not diagnosed because of negative lab results, even in the face of a textbook presentation of signs and symptoms, or a strong enough case history to warrant the diagnosis" (McFadzean, 2012) My doctor believes that my symptom picture and history, plus the consideration of my CD-57 test and other previous testing that points towards the possibility, is enough to suggest that there is a high likelihood of chronic Lyme. He has, with my permission, started me on treatment which, in itself, will give clues into the presence of any infection.
"Theoretically, if the person did not have Lyme disease, a course of antibiotics would not dramatically affect their symptom picture. An antibiotic trial that validates the Lyme diagnosis might give a response of either an improvement, or a worsening of symptoms consistent with a Herxheimer reaction... either way, some shift in symptoms would be expected." (McFadzean, 2012)
I am also to complete a questionnaire which will help to identify likely co-infections.
Treatment:
I am being eased into treatment slowly. The first medication he has put me on is Plaquenil (200mg), 3 days a week for the first week, then once daily from that point. After the first week of daily Plaquenil I start with Azithromycin (500mg), beginning with just 1/4 tablet daily.
"Plaquenil is essentially an anti-malaria drug, although it has multiple uses in medicine. In Lyme treatment we primarily use it to address cyst forms of Borrelia...
Unlike prednisone, which is immune suppressant (and should never be used in patients with Lyme), Plaquenil is more immune modulating and balancing, thus reducing the autoimmune process without wiping out the beneficial and necessary parts of the immune function.
Another benefit of Plaquenil as mentioned above is the way it can shift the pH of the cell to make azithromycin and clarithromycin work better." (McFadzean, 2012)
When used as part of Lyme treatment protocol, 200mg of Plaquenil, twice daily, is the recommended dose, according to Dr Nicola McFadzean, a lyme literate doctor and naturopath, and author of several books on Lyme disease and it's treatment, including 'Lyme Disease in Australia: Fundamentals of an Emerging Epidemic'.
"Azithromycin is a gentle medication that is typically well tolerated. While it is not the more effective for Borrelia itself, nor used as a first-line therapy, it has it's place in Lyme treatment protocols. It is more effective for musculoskeletal symptoms such as joint and muscle pain than neurological symptoms. Some individuals who would not be able to tolerate doxycycline can handle azithromycin...
Azithromycin and clarithromycin are not considered first line drugs for Lyme due to their limited effectiveness. This may relate to the fluid pocket created around the Borrelia bacteria in the cell. The fluid is quite acidic, meaning it has a low pH, and that acidity may inactivate azithromycin and clarithromycin. A way to overcome this is to give hydroxychloroquine (Plaquenil) or amantadine, which can raise the pH of the fluid and allow the two medications to work better." (McFadzean, 2012)
Next Steps:
So, the journey continues!
I have an appointment to follow up with my doctor on Wednesday October 16th. Particularly due to the way that I am being slowly eased into treatment, it may take a number of weeks, even a few months, until we can say for sure whether or not I have Lyme disease (as a result of the response, or lack of, that my body has to treatment). So far I have taken 3 doses of Plaquenil. Each time, I have felt nauseated in the afternoon and evening after having taken the drug in the morning, and have not had this nausea on the in-between days. However, as nausea is not a new symptom to me, I can't say at this point whether this might actually just be a coincidence. Nausea is also listed as a possible side effect of Plaquenil. I seems to me that it is likely that if I am to experience 'herxing' this is less likely to occur before I start on the Azithromycin. Even then, it might not occur until the dose has been increased significantly. It is also highly likely that other medications will be added at some point. I would, of course, like to have an answer as soon as possible, but I will just have to be patient and take this one step at a time.
I'll find out the next step three weeks from tomorrow.
Do you live in Melbourne, Australia?
Are you interested in learning more about Lyme disease, and why it is so very important for there to be greater awareness of this illness both within the medical community and the general population?
Please check out this event to be held on October 29, hosted by Catherine Deveny.
If you do not live in Melbourne, but would like to know more, a great place to start is by watching the documentary 'Under Our Skin'
You can also learn more about Lyme disease in Australia by reading Dr Nicola McFadzean's fantastic book on the subject.
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