In a video post from April, I explained that my new doctor believes I have chronic Lyme disease, but the results of a Stonybrook Lyme test were inconclusive. As a result, she (Dr. M) wanted me to conduct a Lyme "provocation" test, in which I take an herbal supplement (called A-L Complex), which is supposed to stimulate the immune system to kill the Lyme-causing borrelia bacteria. Apparently, after the immune system kills some of these borrelia, the Lyme blood tests are more likely to detect the presence of the borrelia (because live borrelia are adept at hiding.)
My instructions were to begin taking the A-L Complex starting with 3 drops per day, then, three days later, increase to 6. Then, three days later, up to 9, and so on up to 20 per day. After I reach the 20-per day dosage, I was supposed to repeat the Lyme test.
The problem is that even 3 drops per day made me feel awful--brain fog, headache, muscle pains. So, on my own, I reduced the dose to a mere one drop per day, and still felt terrible. (It's interesting that the directions on the bottle of A-L Complex instruct the user to take only 2 drops per week. We're going way off-label here.)
Over the last month or two, I've continued to experiment with fractional doses, hoping that I could find a way to slowly titrate to 20 drops per day. As it stands now, I don't see how I will ever be able to make it to 20. I can't even handle 1. Granted, I'm being a little bit of a baby about this. I could do it if I really needed, but it would be near impossible to keep up with my home and work responsibilities at the same time. So I'm trying to figure out my next step. I either have to set aside a month in which I reduce my responsibilities and devote myself to titrating and testing, or return to my doctor and admit failure. I could ask my doctor if there's a "Plan B"--perhaps using antibiotics instead of A-L Complex. (Antibiotics are, I believe, the standard for Lyme provocation tests, but I originally declined.) Or perhaps my reaction to A-L Complex is evidence enough that I am dealing with Lyme?
Hi,
ReplyDeleteI just checked the A-L Complex and it contains so many herbal ingredients that have anti-viral, antibiotic and antifungal properties which might work against a lot of other infections. So to me, that reaction of yours might indicate that you are dealing with a serious infectious pathogen which could or could not be Lyme. Or probably with a group of pathogens :)
Try the iGeneX test perhaps? Mine was also inconclusive, but if you cross index your two tests that may help provide more data.
ReplyDeleteI think it's really important to take Lyme seriously, and the fact that you're reacting to the A-L Complex is probably a signal that you are indeed suffering from a Lyme infection.
ReplyDeleteI had sudden onset ME/CFS starting two years ago (night sweats, chills, fever, etc., the classic symptoms) and all the expected bloodwork (EBV, HHV6, low NK), but anti-virals did nothing for me, and so I went and saw a LLMD and was diagnosed with Lyme a few months ago.
I've also heard from a couple of other long-time ME/CFS sufferers that recently got a positive Lyme blood test.
Please don't delay Lyme treatment, even if it means you will need to take time off from work and your other responsibilities. I wish I was diagnosed with Lyme and started treating it before viral onset, and if you're well enough to work, you should be well enough to handle careful treatment.