Ever since my second appointment, Dr. M has stated her belief that I may have chronic Lyme disease and its common co-infection of Babesiosis. Babesiosis is another tick-born disease that is often transferred to the infected patient along with Lyme disease by the same tick bite. The suspicion of Babesiosis was based on my shortness of breath and the periodicity of my symptoms. Apparently Babesiosis symptoms come and go on a predicable schedule and Dr. M felt that my reported intervals of aggravated symptoms matched roughly with Babesiosis.
In 2011, when I first fell ill, I of course had a Lyme disease blood test through one of the large corporate blood labs. I had the Western Blot test (which is considered by some to be superior to the ELISA test.) The results were negative.
Since then, I've had many people advise me that I should be reevaluated for Lyme disease by an LLMD. I nonetheless felt that Lyme was an unlikely explanation for my symptoms. My prior doctor, Dr. W, told me he didn't think it was Lyme. I never had any joint pain or arthritic symptoms, as are common with Lyme. So I assigned Lyme a low priority on my mental list of possibilities to investigate.
After teaming with my new doctor, I was still reluctant to investigate Lyme. Dr. M wanted me to take a test through the iGenix lab, which offers a version of the Western Blot Lyme test that is considered by many to be more accurate than the large national labs. But there were two problems: (1) the Genix test is not covered by insurance and can cost about $900, and (2) the iGenix test is somewhat controversial, as some believe that it tends to over-diagnose people with Lyme disease.
I finally agreed to spend the money and take the iGenix test. I truly believed there was a strong chance I would be the rare person to test unequivocally negative, even under the sensitive iGenix test. This would, I hoped, put the Lyme issue behind me forever.
My doctor's office emailed me the results of the test on Wednesday night, ahead of my appointment. The IgM antibodies for Lyme disease were positive. The iGenix results show a diagnosis of Lyme under two standards: iGenix's own standards, and under the standards promulgated by the national Centers for Disease Control (CDC). If the iGenix standards are considered by some to be over-inclusive, the CDC standards are considered by many to be very under-inclusive.
My IgM antibodies showed positive for Lyme under both iGenix and CDC standards. This captured my attention.
It should be 100% clear that I have Lyme diseases, right? No. Naturally, there's ambiguity. My IgG antibodies were negative for Lyme disease under both standards. IgM antibodies (positive) are indicative of a current, active infection, while IgG antibodies (negative) show past infection. Dr. M's interpretation is that I still have an active Lyme infection and my body hasn't progressed to the stage of making IgG antibodies because the Lyme remains "active."
With respect to my doctor, I'm not certain that's how IgG antibodies work. My understanding is that the immune system begins making IgG antibodies a few days to a few weeks after initial infection, even if the infection is still technically "active." Unless I contracted Lyme on Monday (ha!), these results seem almost impossible.
The results of my Babesiosis test were equivocal. Indeterminate. Because of course they were! It seems nothing is ever clear with chronic diseases.
I searched the Internet the night before my latest appointment with Dr. M to interpret these test results. There were messages, blog posts, and articles by doctors and patients discussing my exact results. While all of these sources indicated that I do have Lyme, many of them referenced (second-hand) that some doctors apparently interpreted IgM(+) and IgG(-) as a false positive result. No such doctors could be found explaining their reasoning directly, rather there were vague, passing references to "some doctor's views." I feel as if I'm only reading one side of the debate.
Still it is very hard to ignore the positive results under the strict CDC standards--right there in bold ink. The words "CDC -- POSITIVE" practically demand my attention. Plus, it seems as if most self-identifying Lyme patients who have been diagnosed through the iGenix test were not positive under the CDC standard.
I'll be honest: I am loathe to enter the Lyme "rabbit hole." I've spent the last 4 and a half years researching and treating ME/CFS. The Lyme community of patients always had a significant overlap with the ME/CFS community on message boards and blogs. We were these two groups with seemingly about 95 to 100% overlap in symptoms and about 70% overlap in treatments. Basically, we all speak the same language. Yet in some ways the two communities seem worlds apart. The Lyme community often appears closed and esoteric, and many Lyme patients disavow any connection with ME/CFS despite strong evidence that there's a similar chain of neuro-immune dysfunction in both diseases. Nonetheless, both communities are bound by the connection that their diseases are understood by virtually nobody. We've all been forced to adopt a sort of "us versus the world" defensiveness.
I've interacted with many Lyme patients on forums, many of whom are undergoing long-term antibiotic treatments. Of those that I've personally interacted with, I can't think of any who have experienced any improvement on long-term antibiotics. For that reason I'm reluctant to explore antibiotic treatment. I recently read an article by the incomparable Cort Johnson that explained how some have been harmed by false Lyme diagnoses and unnecessary antibiotics. I'm not shutting that door completely, but it would the last of last resorts for me -- pending more investigation.
In my mind there's about a 51% chance that Lyme is the cause of my problems. But I suppose that I need to give Lyme treatments a chance. How do I explain the positive CDC result? Then again, how do I explain the prior negative Western Blot result, presumably under the same CDC standard?
Dr. M wants to treat it with a combination of Byron White formulas, "essential oils" treatment, and
Phosphatidylcholine. I have to start researching these treatments. The frustration is that it is difficult to find objective information on these treatments for Lyme. Most of the information available is from Lyme patients who are taking these treatments, or "LLMD's" who prescribe them. Both groups are predisposed to believing their efficacy.
Rabbit hole, here I come...