Many years ago a friend told me to take echinacea to ward off colds. I tried it one time and was worse for wear afterward. I kept the herb around for a long while, in my cabinet to never be seen or heard from again — so I thought — as a reminder this mess is no good for me. My bad experience with echinacea happened long before I was diagnosed with lupus.

After my diagnosis, a friend of a friend — a nutritionist/homeopathic specialist — told me, in no uncertain terms, stay away from echinacea. She told me the herb has been noted to cause flares in people with autoimmune diseases. I should have written her words in gold lace or indelible ink on my walls.

Two years ago, in 2007, while battling what I thought was a bad cold, I went out, purchased and tried echinacea again. I honestly forgot the warning and my bad experience. What resulted was a very bad kidney flare-up. I began retaining fluid, my legs became tree trunks, and I had shortness of breath. I did not attribute my worsening condition to echinacea until days later when I had to ask myself what new thing did I eat or drink. Bingo, it was echinacea.

I did not tell my doctor I had been taking echinacea to ward off a cold because I did not suspect echinacea. My doctor did switch my meds from CellCept to Cyclosporin and when I did suspect the herb, I stopped taking it and all was well and right with the world.

Some doctors believe the herb is good for the short-term, 2, maybe 4 days or so but not a long haul. Johns Hopkins’ Dr. Michelle Petri gives the following warning:

Some of my patients, when admitted to hospital for a lupus flare, advised me that they had taken Echinacea. At first, I didn’t think this could have caused a lupus flare, but after the second or third case, I said I’m going to do some research. It turns out, it has been known in Germany for many years that Echinacea can cause flares of autoimmune disease. If you live in Europe, it says right on the Echinacea label not to take it if you have autoimmune disease. So, after hospitalizing some of my patients with terrible kidney flare-ups who had taken Echinacea on a daily basis, I have now forbidden all my lupus patients from taking it. Maybe it would be okay for a few days to prevent a cold, but my patients were taking it everyday to try to prevent the next cold. Please be careful when taking alternative medications.

From John Hopkins Information Center: Lupus Information

Note she says “Maybe it would be okay for a few days to prevent a cold, but my patients were taking it everyday to try to prevent the next cold. Please be careful when taking alternative medications.” In my case, I completely discounted echinacea because it is a “natural herb” and thus, safe. Boy was I wrong.

I won’t touch the stuff now because memories of that one bad flare strikes terror in my heart.

Another doctor, Sheila Frodermann of Providence Wholistic Healthcare, has been practicing naturopathic medicine in Providence for almost 10 years. Naturopaths, according to Frodermann, receive training in conventional medicine like that of a family doctor. She uses a holistic approach to treat the whole person and not just their illnesses.

Frodermann says echinacea “has much research to support both its use as a prevention to viral illnesses and during a viral illness.” She does warn, however, “that this herb should not be taken by people with autoimmune diseases such as rheumatoid arthritis, multiple sclerosis, inflammatory bowel diseases and lupus.” (From Flu fighters: Alternative therapies aim to strengthen immune system.)

Again, we are all different and some of us have more tolerant systems than others. My mistake was a learning experience and I also believe everything happens for a reason. I was blinded to my prior experience with echinacea so I could have the horrible experience and the “burned in” memory.

It is quite possible there was a drug-herb reaction in my case which is not completely understood or perhaps thoroughly researched. If it works for you and you have had no problems, fabulous. For others, avoiding habitual use of echinacea may be prudent. As always, discuss its use thoroughly with your doctor.