My husband and I live on a farm in Central PA, regularly pick deer ticks off our animals and ourselves, and in retrospect, realize we’ve had an erythema migrans or two. I’ve likely had lyme for 15-20 years without knowing it. Early in ’06, thanks to a Toronto article and savvy PA doctor, I got a lyme diagnosis and took 5 months of oral antibiotics to no apparent avail (my CD 57 count remains low, and achiness, arthritis and fatigue continue). Last fall, armed with your book, I, followed by my husband, started on your protocol, one herb at a time: cat’s claw, andrographis, resveratrol (“your” brands), slowly increasing dosages as you suggest. My husband’s worst symptoms improved and I was less tired. I added devil’s claw, nettle and vincamine. The only other *new* things I took were pregnenolone, alpha lipoic acid and melatonin (& same old vitamins, minerals).
After several weeks on that protocol at four pills 3x/day at most, both my husband and I developed spots all over our bodies, especially the chest and lower leg fronts. Then came painful welts in our mouths, and sore lips, making it difficult to eat and drink, and eventually for me, even to speak (and I’m a life coach!). Some body spots were large and raised, others small and flat; some purple and smooth, others patchy and red. A few bled with little provocation. None hurt but the scope of the invasion was alarming. Online research prompted me to stop taking resveratrol, then andrographis, and later, devil’s claw. Though I was off those for weeks, the spots and sore mouth persisted. My new alternative MD, who went to the last ILADS conference and bought your book at my suggestion, saw me 3 weeks ago and said to stop all herbs till the blotches clear. She diagnosed erythema nodosum and possible vasculitis that may be more than skin deep; and she ordered blood work, including for lupus. If the spots aren’t gone when she sees me again at the end of this week, she’ll order a biopsy.
Meanwhile, my always strong hair has suddenly started falling out in brushfuls and I wonder if there’s a connection to the skin and mouth issues, which have improved slowly since stopping the herbs. I want to reintroduce the herb protocol in the order you suggest when I am all clear. First though, I would like to know if you think these symptoms, unusual for me, are caused by Borrelia burgdorferi, Herxheimer reaction, and/or a single herb or herb combination. We are all baffled by the appearance of such intense, similar reactions in two people with very different constitutions who, aside from the presence of lyme, are healthy, happy, physically fit, eat well and get plenty of rest. We also wonder if you can recommend a lyme literate herbalist who might do phone consults or be within a three hundred mile radius of Harrisburg, PA. We obviously want to avoid lyme dementia, immobiization, et al. Thank you for any help you can give and for your marvelous book!
Oh, this sounds uncomfortable. Regrettably, andrographis can and does cause hives like welts in about one percent of the people who take it. Though I have not heard reports before about them being in the mouth. Normally however both people in the family are not that sensitive. The allergic reaction can take up to a month to clear, though usually within two weeks they do so. I have never heard of knotweed causing these problems, nor cat’s claw. Lyme can cause some of these symptoms as well, so the decision to stop the herbs and look deeper is a good one. It has been some time since this question came in, do you have an update? As to lyme literate herbalists, see my website for some under Lyme Updates and you might try Kate Gilday at www.woodlandessence.com.