Welcome back to
This is My Lyme Life: Dr. Alyssa (Chapter 4)
The adventure continues.
My older son’s final bloodwork came back and he tested positive for Lyme Disease. As with the Bartonella diagnosis this is not a big shocker. Looking back on his complaints and behaviors these past few years, it does explain a lot. It explains why I always felt his nervous system was on the point of exploding. Why there were random rashes and joint pains with seemingly no origin (I guess they weren’t growing pains after all). It also explains why he was in sensory overload for more years than I like to recount.
When these two diagnoses finally settled in, I had a few moments of regret that sounded something like this. I should have pursued this further years ago when it first crossed my mind. Look at all the money we spent at occupational therapy and listening therapy. I wish I found a pediatric Lyme doctor sooner. Etc. Etc. Etc. There are so many reasons it’s not wise- or healthy- to go down this road. First of all, it helps nothing and gives no guidance to the future when you spend time looking back. Secondly, I think the coping skills he learned and the growth that came from those programs was invaluable. Plus a few years ago I was not armed with the knowledge and resources I am now. No matter what, these diseases are part of the whole person. And the whole person needs to heal in order to get better. At least that’s the way I see it, so that’s what we’re doing.
As of today, my big guy is still only on the Bartonella drops, and his response is positive. I have ordered the Borelia Burgdorferi drops (FYI those drops are named for the bacterial spirochete that causes Lyme Disease) as well as some detox drops. He and I will begin these drops as soon as they arrive. On my end of things, not too much to report. I had a rough day earlier in the week, and if this blog has revealed anything to me it’s that about once per week I have a challenging day. If that’s the worst of it, I consider myself lucky. This “rough day” consisted of some minor aches and pains, a fairly foggy head and two small, bilateral rashes. If I had to guess, this all has to do with my not detoxing well enough. Thankfully a good night’s sleep, lots of lemon water and parsley, an adjustment and some acupuncture followed, so I was back on track.
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This Lyme world is a deep, dark rabbit hole but I hope I am helping at least some of you navigate it a little bit better. As I see it, one of the major issues lies in the testing. The blood tests we receive when we go to our regular primary care physicians and pediatricians are sent to labs that are just plain unreliable. The tests they run are not sensitive enough to accurately diagnose Lyme Disease. I don’t know the exact statistics, but “over 50% inaccurate” is what I most often hear. This means that if a test comes back “negative,” logically leading you to believe that you don’t have Lyme, there’s a greater than 50% chance you actually do have Lyme. That’s pretty wild. Besides batting averages and weatherman predictions, I don’t know many places where less than 50% accuracy is the standard.
Most of the time, in a general practitioner’s office, the first test you see requested is the ELISA test (enzyme-linked immunosorbent assay). I have heard this one is only 30% accurate. The more advanced test for Lyme Disease is the Western Blot. This is also known as “immunoblotting” since an antibody (body’s reaction) is used to detect its antigen (foreign invader). One thing I find fascinating about the Western Blot that’s done for Lyme is that even the interpretation of the same testing is not agreed upon. Through a regular laboratory, if the test comes back with two, three or even four antibody bands present, by CDC standards, it’s not considered positive. They claim you need five to get a diagnosis. Clearly there’s some antigen in your blood causing the antibody response. But no, you need five bands to light up in order to be deemed positive. Whereas with a lab like Igenex you only need two. That’s a BIG difference. It blows my mind.
It must be stated that even through a lab with sensitive testing and proper interpretation, such as Igenex, a few positives cases can still be missed. This does not happen often, but there are a few reasons it can. One reason (and probably the easiest to understand) is that the bacteria can hide, and therefore there may not be circulating antibodies when the blood is drawn. Again, this is a rarity, but I thought I should mention it.
If you would like to read more about how to interpret your Western Blot, please click here.
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I do have to wonder where everything went terribly wrong with the diagnosis of Lyme Disease. I know there are many books on the subject, and conspiracy theories out there, but now it’s not important where it went wrong. What matters is bringing it to light, and hopefully, one day, getting it the mainstream attention it deserves.
This cartoon feels like a fitting place to end this chapter.
Enjoy. Be Well. And have a happy and healthy July 4th weekend.
(cartoonist unknown)
Yours in Good Health,
Dr. Alyssa Guglielmo