NYC Mount Sinai Integrative Medicine Conference

New York City is one of my favorite places, so when I was informed by Henry Erlich that this conference was being held in the Big Apple, there was no hesitation in buying a plane ticket.

The conference was this past weekend, May 13th-14th. I was only able to attend the primary day. However there was plenty of information to be absorbed. My main reason for going was to hear the prestigious and awe-inspiring Dr. Xiu-Min Li spill her knowledge on allergic disease, ASHMI, and her take on Red Skin Syndrome. She will be one of the doctors I humbly get to interview for the documentary this summer, and I am stoked! Such an amazing woman whose research I know will change the way we treat eczema in the next decade. I see a Nobel Prize in her future.

Dr. Li has a phenomenal opportunity while working at Mount Sinai, bringing together both Western and Eastern medicine in a clinical setting. No Western doctor will be able to deny her results and her rigorous efforts to show how wonderful Traditional Chinese Medicine can be (and is!) for our growing allergy and eczema problems.

Besides Dr. Li, there were a plethora of doctors participating, some even flying all the way from China. We had headphones and a translator present in order to understand everyone speaking.

At the bottom, I will be posting a video of Dr. Li’s talk and all that I was able to film. Sadly, I was told we couldn’t video anything so I wasn’t prepared. It was only very late the night before that I was told I was misinformed. I did my best filming with my heavy camera and old phone while trying to listen. It’s a bit shaky, so I apologize. It had been down pouring that day, which soaked my shoes, so most of the conference I was bare foot, attempting to sit on my feet in hopes of warming them up in that already frigid auditorium room.

But here are a few highlights from the conference:

1st Speaker: Susan Weissman

Her son, Eden, had horrific allergies, asthma, and skin problems. She found Western medicine was not helping their son improve. She is an avid promoter of Dr. Li’s work and is happy to say her son is finally able to enjoy life because of her protocol. She is the author of Feeding Eden, a memoir about raising Eden with all of his serious health problems. I think the most profound thing she mentioned was her question to Western medicine doctors: “How do we treat the entity of allergic disease?” Medicine seems to be extremely narrow-minded instead of looking at the body (or a condition) as a whole.

2nd Speaker: Dr. Xiu-Min Li

She gave a brief oration before her longer one at the end of the conference. The merit of her work is astounding and she emphasized how necessary it was to be able to show how TCM brings results that Western doctors can believe in and not have them be able to dispute them as “false” or “not supported.” All of her work has to be proven through science.

4th Speaker: Shi-Ming Jin, MS

*Apologies since I skip over a few speakers*  I loved how she spoke about how the integrative world is striving to be more innovative and adaptive to Western world medicine in hopes of showing how TCM is helpful and important in giving patients relief.

8th Speaker: Jing Li, PhD, FDA Botanical Review Team

Basically, there are FDA guidelines/guidance for using botanicals (herbs) in medicine. They are tested in clinical trials just the same as Western medicine, so they are treated equally. It can not be written off. A demonstration of quality control was given, and how they wish to minimize any chemical, biological and pharmacological variations to obtain consistent drug substances.

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10th Speaker: Ke Xing Sun

He gave a speech about how using TCM is about keeping harmony in health with our whole body working together as a unit. We are individual people with individual needs, something Western medicine does not always provide. We should be more patient-centered with medicine. He also advocated health in daily life, reiterating how prevention is key.

11th Speaker: Arya Neilson, PhD

*She was a stellar speaker* She deals with acupuncture and the benefits it can give to certain patients, even those with eczema. One of the most interesting things was how this type of treatment post-surgery can help with opiod sparing since we, in the US, take up the vast percentage of opiod use around the globe. Opiod abuse it sky high and having this available is quite a remarkable treatment. Acupuncture is now even included by Western doctors in some therapies! When it comes to allergies and eczema, there was a study done to show how dust mite IgE levels were down regulated after using acupuncture, and how itching was reduced in eczema patients. However, acupuncture is more of a rescue therapy for patients and herbs should come first in eczema treatment. (She is featured on the video)

12th Speaker: Scott Sicherer, MD

He spoke eloquently about his field in allergy/immunology in babies and what could be causing such an exponential climb in allergies these past few decades. No one is for certain, but he feels having exposure to the skin could be a factor. For some reason, there has been found to be peanut dust inside of homes, which is where skin contact could become an issue. If babies have eczema, they are at a higher risk for allergies. He would use oral immunotherapy to try and desensitize the allergy, hoping to eradicate or raise the threshold. Scott touched upon using biologics (omalizumab) for some cases for 20-22 weeks (it’s an anti-IgE), but he says it doesn’t mean it’s going to be any more effective (just perhaps speeds the process).

14th Speaker: Rachel Miller, MD

Rachel continued to speak on allergies and issues in infants and children, focusing a bit on pregnant woman. She showcased how if a pregnant woman is under stress, her child is more likely to have wheezing. She also explained how methylation and DNA does play a role in some of these areas and how Dr. Xui-Min Li’s protocol, ASHMI, has shown good results in pregnant mothers.

16th Speaker: Anna Nowak-Wegryzn, MD

She gave a very in-depth speech about allergies and infant treatment. When she mentioned starting oral tolerance as early as 1 year old, a question popped into my mind. If we can detect and start to treat allergies at that age, why is it that Western doctors are so quick to lather steroids on a baby, but claim they can not test for allergies until about 3 years old? That’s something that I feel should be addressed. When it comes to peanut allergies, she said she personally thinks using boiled peanuts instead of baked are safer to use for desensitization without losing efficacy.

** Funny side note** Dr. Xiu-Min Li came up and asked a question during Q&A. She asked it in Chinese, and the speaker answered back in Chinese. Everyone asked what was said so Dr. Li offered to translate. She started to do the translation, but didn’t realize she was still speaking in Chinese, so someone stopped her. She didn’t realize she wasn’t speaking English. We all had a laugh.

18th Speaker: Julie Wang, MD

 She spoke about a drug trial (See pics below)

20th Speaker: Dr. Kamal Srivastava, PhD

One of his best and to the point notes was that IgE is central to the pathology of allergic disease. Another subject he touched on was FAHF-2, which is another herbal formula much like Dr. Li’s ASHMI. Berberine, an herb, is the most potent at reducing IgE levels, and can even help lower glucose. However, it is very badly absorbed taken orally, so they are trying to make it more effective (perhaps, adding to a molecule).

22nd Speaker: Dr. Ying Song, MD

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23rd Speaker: Anne Maitland, MD, PhD

She studies Mast Cell Activation Disorders. Anne used the Great Wall of China as an analogy, how it’s not always effective for keeping the bad out. Mast cells can release different things, like histamine or tryptase, and just like a police call, you want to send the correct team out to help for the correct situation. She also touches on how when we figured out how to decrease certain bacterial-based diseases (like Measles), hypersensitivity disorders increased (like allergies). Naps, apparently, are something we need more of to help with stress (which I totally agree!).

24th Speaker: Julia Wisniewski, MD

She spoke about our skin barrier and how we shouldn’t use alkaline soap on baby skin. The best thing she mentioned however was that at the latest AAD meeting, she saw a slide that said steroids do, in fact, have the ability to cause allergic reactions in patients. Near the end, she spoke about Vit D and how it’s definitely important for our bodies.

The last two speakers were Tiffany Camp Watson, the mother who gave her testament about using Dr. Li’s protocol, and then Dr. Xiu-Min Li herself! They are both on the YouTube video speaking. Most of the video is of Dr. Li speaking. After 6:30 mins, it is all Dr. Li and her presentation.


I hope this was informative and I can’t wait to have all my equipment in to shoot these upcoming interviews! 2.5 weeks to go!

Interview #14: Danae Kirtley

DanaeDanae Kirtley

Eureka, California

1.When did you start using topical steroids? And why?

I started using topical steroids by recommendation from my family practitioner in an effort to treat my childhood eczema, starting at about age 10.

2.  What was the name of the topical steroid?

To begin with, my parents and I were advised to use over the counter Hydrocortisone cream (.5-1%) liberally, to any and all rashy areas of skin. Was also advised to apply like lotion after every bath or shower as a “prevention method” even if my skin was not affected by eczema.

3. Were you ever prescribed more potent steroids? 

Yes. After a few years of using Hydrocortisone cream and my problem areas had spread and become more vigilant; I was given a trial tube measuring a few ounces of Elidel. After that didn’t work and burned my skin, I was prescribed Triamcinalone ointment, which I rarely used because I hated the texture, greasines, and how much it burned my skin.

4. How did you find out about RSS?

I found out about RSS after researching online desperately for the cause of my worsening symptoms. After using Hydrocortisone cream twice daily to my face, and 3-4 times a week on my entire body like lotion for 10 years- My body had seemingly given up. I couldn’t suffer anymore, and I needed answers. I found ITSAN and there began my diligent research.

5. What made you feel you had RSS?

What had made me feel like I had RSS was that once the information was before me- I just knew. I had never thought that anyone else had suffered the same symptoms and had suffered so uniquely as I had. I read the many testimonials, medical documents, blogs, vlogs and more from people all over the world with the same story I have.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

I was not diagnosed by a doctor, however- my General Practitioner was very supportive. She was just as baffled as I was at my chronic, increasingly debilitating symptoms. She agreed that the amount of exposure and absorption of steroids I had was alarming. We came up with a plan to taper down my usage and to meet more regularly so that she could monitor my symptoms and keep track of my progress. All the while, she had ordered many different blood tests to rule out any other autoimmune diseases, disorders, deficits in nutrition and more. Nothing of relevance to explain my symptoms came up with as many tests as we did.

7. What were your first symptoms?

My first symptoms of Eczema began as early as preschool years, between ages of 5-6 years old. My inner elbows and back of my knees were always dry, sensitive and itchy. After the first year of using Topical Steroids, my rashes had spread all over my arms, legs, and had begun manifesting on my face, neck and chest. My body would erupt into bright red, inflamed skin, that would burn like I had never experienced before and itch deep within my subdermis within one day of not using Topical Steroids. It had become a begrudging truth that my body NEEDED the application of Steroids daily, and for years, to maintain any semblance of normality. All the while, my health declining. What initially caused me to research the symptoms of long-term use of Steroids, was my rapid decrease in weight, my eyesight, worsening skin condition, and hairloss.

8. Is your family supportive? Friends?

For the most part- Yes. Once I had done about 3 months of personal research, and had already been to a multitude of appointments with my GP, and Ophthalmologist, I created a plan to introduce my and my doctor’s findings with closest family and friends. I asked for their support and provided opportunity to allow them to ask their own questions, express their concern and understanding. Several of them completely agreed that withdrawing from Topical Steroids would be in my best interest long-term. Many of them came to my aide in the best ways they could, be it care-packages of sterile gauze, feeding and helping me with personal care, or stopping by to spend time with me while I lay in bed for those many many months of disability.

9. Have you ever been to a hospital for this? Why?

I had been to the hospital for blood-tests, I had considered going to the ER multiple times when my symptoms were so severe that I was in and out of consciousness because of the extreme amount of pain I was in. Thankfully I was under the care of family and my Fiancee, who all did their best to comfort me and do everything they could to surround me with love and support. The possibility of being administered Steroids in addition to any much needed pain management medication had I gone to the ER- was too much of a gamble against my progress.

10. What has been the hardest part of this condition?

Besides the incomprehensible amount of pain that I endured(and endure still from time to time), is the decline of my mental health. Being suddenly thrust into Disability and not having a definite time-frame for healing and success is taxing to say the least. I was often alone, with my own thoughts, while being unable to move and bedridden. I became unable to look at my own reflection as the person I had always been and seen looking back at me was gone. I didn’t recognize myself, and being unable to function in a physical capacity only fed into a Dissociation type state even further. I was in a very deep Depression along with weeks of insomnia. To this day, my anxiety and difficulty relating to others in social activities still is of great difficulty for me. I continue to challenge myself in positive ways. However it feels as though I am forever changed, mentally, because of this illness.

11. How long have you been in withdrawal? 

I started tapering my usage of Steroids under my General Practitioner’s guidance in the very beginning of November 2014. I started my full withdrawal after my birthday in December 2015. On the day that I am writing this, it has been 817 days since my last application or administration of Steroids. I am not yet ‘healed’, however, I have made a tremendous amount of progress. I went from being completely unable to perform the smallest tasks for myself, like sitting up in bed. Brushing my teeth, or walking at times… to now being able to walk, work part-time, I do daily house chores, and even present as a normal person from day to day. I have bad days, but they don’t knock me down nearly as bad as they used to.

12. What do you use as comfort measures during this?

I listen to lots of music, I play music myself, I have been catching up on all the shows, and movies I have missed throughout the years. I drink tea and have many contemplative moments, writing, and lots of snuggles. Sometimes I am inconsolable, but the truth in those moments are that they are always temporary- as my best friend and beloved fiancee has said since day one of TSW, “Maybe Tomorrow…” Which to us, means: Tomorrow may be a better day, it may provide better or different opportunities to be fulfilled, or more able. It is a phrase that instills Hope, even when things feel or seem very dark, it will always get better.

13. Are you employed? Has this affected your job status?

I have now been employed after a 2 year absence in the workforce, for 5 months! This means a lot to me as I have always worked hard and enjoyed being employed. Being affected by TSW still provides interesting challenges at work for me. Thankfully my Manager and coworkers are all very understanding and are more than willing to make exceptions or take on tasks in order to keep me comfortable. I am very thankful and humbled by my ability to work with such supportive people. Sometimes I have to sit, while I am on shift, as I get very dizzy and disoriented after standing for hours. Sometimes I have to take an additional break to relax, or coworkers have had to come in as a replacement for my missed shift because of a ‘Flare-up’ that inhibits my ability to perform my duties. I am pleased to share that my strength and physical duress has improved over the past 5 months and I only hope to continue getting better.

14. Have you gone to therapy/wish to go to therapy because of this condition?

Yes, I would very much like to go to Therapy because of TSW. I have all of the classic markers of PTSD from this condition, and because of the extreme amount of mental stress I endured. I have had a resurgence of mental symptoms and new ones (that I do not wish to share), that do get in the way of my daily activities because of TSW. The amount of trauma and pain that we all go through with this condition is absolutely extraordinary and severe.

15. If there is one thing you could say to another sufferer, what would it be?

IT GETS BETTER. It may feel like this pain will last forever, but it does not. I remember that hopeless feeling very very well- but we do get better and I am proof of that.


Thank you for such a terrific interview, Danae!!!!!

Feature #30: Meghan & Kristen

Meghan PicklesMeaghan Pickles

Age: 13

Career: Student

When did you cease using topical steroids: Feb 2016

What type did you use: Hydrocortisone 1%, Betamethasone, Avantan fatty ointment

What is your favorite product for comfort?  Epiderm, Tubifast Wet Wraps, safe soda bicarb of the bath and the body, Queen Bee Balm (Bee Skin Recovery)

What is the hardest thing to deal with during this condition? Enduring the worst pain of my life, oozing skin, shivering and feeling freezing cold even in hot temperatures, the skin snowing and rejuvenating every three days to raw skin, the intense burning, constant dilated capillaries that leave the familiar red mask of TSW, the lack of support from specialists and then being threatened we would be reported to child services for refusing steroids! Losing most of my friends.

What was the first thing you did when healed? I went to a BBQ for 2 hours, I was free, I was out of the house without wet wraps, I went shopping and tried on new clothes instead of staring on in pain watching my friends do what I couldn’t do. I lost nearly a year out of school, but now I’m healed and it’s all over.


Kristen BKristen B

Age: 21

Career: ECE/ Nanny

When did you cease using topical steroids: Feb 19th, 2017

What type did you use: Hydrocortisone, Ellidel, Protopic

What is your favorite product for comfort?  Ice Packs, Aquaphor, burning my arms when itchy

What is the hardest thing to deal with during this condition? Having to re-home some of my pets, the draining of my self-esteem, having to go to bed with multiple ice packs and a fan since I can’t fall asleep otherwise, and the financial hardship having to spend tons on remedies.

What is the first thing you will do when healed? I plan on working out, eating whatever I want and not having to worry about a flare, go out with my friends, play with all my animals again that are making me flare up, and just enjoy life in general again.

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

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This page should be utilized in every way to spread awareness.