Dr. Xiu-Min Li has a devoted following for her food allergy and eczema remedies. The question is: Can she overcome the skeptics to create a sanctioned therapy? First published in Allergic Living magazine.
ANARIE MATCHETT developed severe allergies at the age of 14. “I ate nuts my entire life, and then one night, after cheerleading, my dad brought me to a Thai restaurant. When I went home, my face started swelling. We went to the hospital and I was anaphylactic.”
Despite avoiding nuts and peanuts as best she could, Anarie, from Collingwood, Ontario, continued to have reactions. She found herself in the hospital every couple of weeks, missing many days of school. Anarie’s worst reaction was on a canoe trip on a bay of Lake Huron, when she ate a piece of pita bread and suddenly got a sharp pain in her throat. Soon she was in full-blown anaphylaxis.
The teen had four epinephrine auto-injectors with her that a camp counselor administered in succession until she could be rescued by firefighters — who arrived in a canoe and got her to an ambulance that raced to hospital. “I was hooked up to all these IVs in the middle of nowhere. The doctors said it was a close call and I almost died.”
Anarie’s mom, Theresa Gregory, desperate to improve her daughter’s quality of life, took her to doctor after doctor. “I remember she took me to a big hospital in Toronto, and an allergist told her there was nothing on the horizon to help me for the next 30 years,” recalls Anarie. Gregory kept searching, and came across a doctor online, Xiu-Min Li, based in New York City, who was using Traditional Chinese Medicine or TCM to address food allergies. The family drove down, and Anarie was soon a patient.
In her Manhattan clinic, Li treats allergic patients with herbal medicines that she has taken from Traditional Chinese Medicine practices, and tweaked for eczema, food allergies and asthma. She gives patients tablets to take by mouth as well as body creams and teas to drink. She also employs other TCM practices, like acupuncture, to treat these diseases.
“I didn’t invent this,” says Li. “I just adapt what TCM already has, and use it for our purposes, with the new knowledge gained from our research.” Families come from all over the United States, from Canada, and some even cross the ocean in the hopes that Li can either rid their children of food allergies — or at least greatly reduce allergic sensitivity. Her patients are committed, even devoted to the unorthodox treatment plan. But can a 21st century disease be treated with methods that originated in ancient China?
FLORIDA MOM Danielle Bollettieri is a firm believer in Li’s Work. Her daughters, Willa Bay and Addie, have both grown up with food allergies. As they approached their teen years, Bollettieri wanted to give them some defense against accidental exposures to their allergens. “They are going to be in college before I know it, and I really wanted to send them off with some protection.” In January 2013, Bollettieri started bringing them to see an allergist, Dr. Scott Nash, for oral immunotherapy in his private practice in Raleigh, North Carolina.
A few months into OIT, in which tiny amounts of an allergen are consumed in gradually increasing amounts, Bollettieri heard, through a Facebook group, about Li and her herbs. Intrigued, in October 2013, nine months after starting OIT, she flew her daughters to New York to meet with Li.
Bollettieri was smitten. “She was so calm, so accepting. She understands the anxiety of being a parent of a kid with food allergies. She gave me a huge hug. Within a minute of meeting her, I just broke down and started to cry.”
When Li begins seeing a new patient, she asks them to bring blood work results, including complete blood count, liver and kidney function, total IgE antibody levels and IgE to specific foods and, at the first meeting, Li goes over their history and determines how she will treat them. Li develops a personalized “protocol” for each patient, which typically includes specific herbs a patient takes orally, as well as creams and herbal baths. If a patient has eczema, the doctor treats that first, and then moves on to other conditions. If they have indigestion, she’s got herbs for that, too.
Bollettieri’s daughters’ initial appointments included a physical exam (looking for eczema), an oral history and 15 minutes of acupressure. From there, Li sent the family home with herbs to take orally, herbs for the bath, and a body cream. For 14 months, they had monthly phone consultations with Li, during which the doctor tweaked their protocols when needed. Since then, they’ve touched base every two to three months.
Have Dr. Li’s herbal treatments worked? While both Willa Bay’s and Addie’s allergies have gotten significantly less severe, it’s hard to know if that’s because of the oral immunotherapy, the TCM, or both. (As an OIT “graduate”, Willa Bay now daily eats a snack containing about 10 peanuts.) Bollettieri explains that Li’s techniques aim to rebalance the immune system, something that’s not done overnight. Li’s research has shown that her herbs work first on the effector cells, like basophils and mast cells. In the first few months on treatment, IgE antibody levels seldom change, but patients often report fewer reactions.
“The effector cells are quiet,” says Li. As more time goes by, she says the herbs work to reverse memory cells from producing allergy antibodies, and then go on to actually reverse IgE sensitization in most of her patients. Even though Bollettieri can’t pinpoint a precise change in her girls due to TCM, she believes the time and money spent on the treatment is worth it. Besides, as Li notes, it can take up to two years for her treatment plan to begin reducing IgE levels.
“I think that their digestion is better,” says Bollettieri. “Other than that, I can’t say for sure. But I understood this from the beginning – I was never looking for magic or a quick cure.”
BOLLETTIERI’S confidence in Li and her therapy is echoed in the Facebook group that first brought the doctor to Bollettieri’s attention: Chinese Herbs for Allergies. It’s going strong, with more than 2,600 members. In this group, open to patients of Li as well as people who want to learn more about her work, parents post questions daily. There are common concerns about the herbal baths staining the tub, and very specific questions about the products they are using. Many in the group refer to their endeavors with Li as “a journey” and a good number are just embarking down the road. A recent post embodies the optimism: “Wow, is all I have to say. We had our first appointment this evening with Dr. Li and I’m so hopeful and excited to begin this treatment journey. Our protocol is going to be more than I was expecting to start with, but I can’t wait to dive in.”
Parents of kids who have been on the protocol for a while report less eczema, decreased IgE antibodies and other health improvements, such as fewer illnesses. An example from one mother: “One year in and peanut [test score] has gone from 83.9 to 43.8! Most tree nuts are gone! And she kicks asthma’s butt now. She has no side effects from the herbs, loves the cream and this mom is full of gratitude and hope!”
If these parents want a case they can hold up as compelling anecdotal evidence, they just need to look at Anarie. Here was a girl who had become so allergic to nuts that she could not do a skin-prick test for almonds without breaking into full body hives and vomiting. For a year and a half she took more than 10 herbal pills a day, bathed in herbs once every week or two and lathered her body with a blue cream. Anarie, now 19, admits that her teenaged self was skeptical. But as time went on, her reactions to trace exposures became less frequent.
Then, in the summer of 2013 when she was in France for a course, she accidentally ate a pastry that contained nuts. Anarie was shocked that she didn’t have a reaction, and called her mom excitedly. “It was an amazing feeling,” she says. “I’m so thankful to Dr. Li.”
But despite the success stories, there is skepticism in the scientific community over Li’s work, largely because she is trying to hold her methods up to the Food and Drug Administration’s stringent standard of proof. Li, beyond the world of her private TCM practice, is a doctor trained in mainstream medicine and immunology, and a professor of pediatrics, allergy and immunology at the Mount Sinai School of Medicine, where she also runs clinical trials and a robust research lab.
There, researchers are studying every last detail of a specific concoction of herbs called Food Allergy Herbal Formula (FAHF-2), a mixture similar to what Li uses in her private practice but which has been refined over eight years. Their goal is to have the formula approved by the FDA and used as a drug to treat food allergies. So far, Li and her team have been able to reverse peanut allergy in mice, but amassing the evidence that it works in human beings is proving a more elusive task.
In fact, a study that was published online in the Journal of Allergy and Clinical Immunology in June 2015, was far from positive. Not only did FAHF-2 not reduce food allergy in patients, the placebo actually worked better than the herbs.
“In the first placebo-controlled trial of FAHF-2 for the treatment of food allergy, the Chinese herbs did not appear effective for the treatment of food allergy,” notes Dr. Robert Wood, chief of pediatric allergy and immunology at Johns Hopkins University, who is not involved in the research. He says he’s hopeful, though, that FAHF-2 could be effective in different doses than used in the trial, or in conjunction with oral immunotherapy.
Reflecting on the study, Li thinks the results were not conclusive because the patients weren’t getting enough of the herbs. To replicate the treatment used in the study that proved highly effective in mice, patients would have needed to take 36 pills a day for two to three years. In this study, participants took 30 pills daily for six months, but many took even fewer than that, and almost half the participants only took the medication for about two months. Thirty pills a day is hard to swallow and, to that end, Li and her team have developed a new formula, called B-FAHF-2 which is more concentrated and easier to take. As well, a new 26-month trial that employs a control group is also being planned.
Next: Dr. Li’s looks ahead to standardizing treatment