Today we welcome a friend of mine Selena Bluntzer from Amazing and Atopic. Selena has a 6-year-old daughter who has food allergies, asthma and eczema. She’s going to share with us about her daughter’s treatment in private practice with Dr. Xiu-Min Li for these conditions. And she needs your help, read on to see what you can do!
ILW: Selena, please tell us a little bit about your daughter.
SB: I have a 6-year-old daughter with allergies to multiple foods, including milk, eggs, peanuts, tree nuts, flax seed, etc. She has a history of asthma and eczema. She was diagnosed with food allergies at 18 months of age, but showed signs of atopy (eczema, etc.) starting around 3 months old. She loves to draw, paint and create and like many kids these days, she is into all things Minecraft. :)
ILW: What lead you to pursue treatment with Dr. Xiu-Min Li?
SB: We have been practicing strict avoidance for years, and after a couple of reactions in the early post-diagnosis period, we remained reaction-free for three years. I had read about other treatment options, which looked promising, but due to my daughter’s multiple list of foods, I did not want her treatment to include ingestion of her allergens. So for a few reasons, we decided that we were content to continue with the relative safety of strict avoidance.
In 2013, I began reading more about Dr. Li’s work with Traditional Chinese Medicine, and then it came back up on my radar when a friend of mine pursued private practice treatment with Dr. Li. At the same time, Henry Ehrlich, was writing Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure and he began discussing his work with me. I was intrigued by the science of TCM; it seemed to offer a physically gentle protocol, it was not allergen-specific and didn’t involve ingestion of allergens. My thinking was that we could continue the comfort and safety of strict avoidance, while re-educating my daughter’s immune system. Plus, Dr. Li’s stellar safety profile put me at ease.
My husband initially raised an eyebrow at the idea of Traditional Chinese Medicine, but after reading Henry’s book he was satisfied with the meticulously conducted treatments that were making their way through the FDA-approval process.
SB: Clinical trials use a formula called FAHF-2 (future trials will use Butenol-refined, Food Allergy Herbal Formula 2), but in private practice, an individualized combination of treatments can consist of pills, teas, creams and bath soaks.
ILW: How are things going for your daughter?
SB: We started treatment a little over a year ago and things are going well. It took some time to adjust to the new regimen, but now it is part of our daily life. Although we have not encountered any side effects, in the early months it was sometimes hard getting my daughter to take the bitter tasting herbs. We’ve made up so many games to make the process more palatable, both figuratively and literally. My daughter has been able to completely discontinue the use of hydrocortisone ointment, which Dr. Li helped us taper off slowly, she is also slowly tapering off the daily oral antihistamine that she has been taking for years. We’ve also noticed improvements in my daughter’s resilience against catching viruses.
Our most recent IgE tests showed drops across the board. My daughter’s numbers had been falling over time, before treatment, which can happen with strict avoidance, but doesn’t necessarily translate into tolerance. The drops seen while undergoing treatment are more meaningful, as Dr. Li’s treatments work to break cell-bound IgE (the troublemakers) and turn them into free-floating IgE. However, IgE testing cannot distinguish between cell-bound and free-floating IgE. In fact, IgE can fluctuate during treatment as more cell-bound IgE is “broken” and becomes free-floating IgE. This is where we can really see the need for better biomarkers, aside from IgE, to gauge progress!
ILW: So, tell us about the fundraiser that is currently underway.
SB: Dr. Li has plans for a practice-based study that will test the effectiveness of B-FAHF-2 on a set of patients and in the process will explore the utility and accuracy of a series of biomarkers, other than IgE, which are specific components in the blood. These biomarkers will hopefully give us a more precise picture of a patient’s food allergies, and potentially their threshold for that food item. Currently, oral food challenges are performed to show one’s tolerance, lack thereof, to a food. With these new biomarkers, information could be gathered through a simple blood test, rather than subjecting the patient to the food challenge without any idea how it will go. IgE is currently used, but it is not always a reliable indicator of severity.
Susan Weissman and I are organizing a fundraiser to raise $50,000 so that Dr. Li can begin work on this study and we are at approximately 84% of our goal, but time is running out. We have until April 30th to raise the remaining funds. This is an interim study that will lay the groundwork for future clinical trials that will be funded at the institutional level and will cost millions of dollars. Dr. Li has tapered the costs down at every opportunity and this is a chance for us, as individuals, to contribute to groundbreaking scientific research in a meaningful way.
We’re asking everyone to help us make the last steps towards our goal, so that research can begin towards finding better ways to monitor the progression and hopeful resolution of food allergies.
Please DONATE NOW – every little bit helps!
The deadline for the fundraiser is April 30, 2015. All donations are tax-deductible to the extent allowed by law.
For more on Dr. Li’s research and treatments, check out these posts: