Wendei & Her Family's Fearless Flight

Shannon and Nancy Asking for Help in Wendei & Her Family's Fight for Their Lives from Late-Stage Neurological Lyme Disease and PANS

As many of you are aware, Wendei has been fighting Lyme Disease hard, on her own, for the past more than three and a half years and now she needs our help. She is not comfortable asking herself, so we have put together this campaign for our dear friend who has given so much to us over many years. We're updating this fundraise as since we posted, Wendei's entire family has been diagnosed. Most recently her daughter who has both Lyme and PANS (infections in her brain)

Wendei 's Journey Finding the (Right) Diagnosis

After years of struggling with unexplained migraines, weight gain (even eating the healthiest of diets), crushing fatigue, and joint  and shooting nerve pain, Wendei was misdiagnosed with fibromyalgia over 9 years ago.

Up until the end of 2016 Wendei always considered herself incredibly healthy. She was diligent about her annual physicals and once she was of age added a once a year mammogram. She ate right and tried to exercise even with chronic unexplained pain and fatigue. She rarely got normal sick so when she got flu like sick four times in four weeks in December of 2016 she knew something was wrong.

When symptoms didn’t resolve, she investigated further, seeing specialist after specialist to try to find an answer and get better so she could once again feel like the vivacious, energetic mother, entrepreneur and wife she used to be. Unlike most people with Lyme Wendei finally scored in the doctor department as one of her long time clients who had become a dear friend of 22 years suspected she knew what was causing all her issues and convinced Wendei to let her test for a battery of diseases and viruses.

 


(Wendei, pre-diagnosis, with her loving children!)
 

 Wendei’s diagnosis came back as late stage neurological Lyme disease as well as the co-infections Bartonella, Babesia and Rickettsia. She also suffers from advanced retroviruses and was recently diagnosed with severe PANS and Mast Cell Activation Syndrome.  She had suspected both she and her son had PANS as they have both suffered from OCD, severe anxiety and depression for years. The only reason she spent the $1850 for the two tests last April is because her son's therapist and psychiatrist were accusing her of Munchausen's By Proxy and the therapist, Dr. Stephen Lovato in Sherman Oaks, threatened to report her to DCFS (Children's Services). Her husband also has Lyme and will be tested for PANS this week as he also has extreme OCD and a bad temper at times. They are both in therapy to save their marriage. Most recently, her daughter wax diagnosed with both Lyme and PANS and are awaiting results on her co-infections. This means the entire family has the same illnesses and have spent over $200K over the last three in a half years just on treating Wendei and her son. During quarantine Wendei decided to take the downtime to focus on her health and began working remotely with Dr. Christine Schaffner, who is Dr. Dietrich Klinghardt's protege. Klinghardt is THE top Lyme doctor in the world but of course treatment is expensive. She travelled to WA last month to treat for a week and is scheduled to treat again in September but this time with her daughter. Because Wendei owns a wellness center and has barely been able to work since mid March, the family is on the verge of filing for medical bankruptcy. One credit card balance yesterday was over $30K. They have blown through their son's college fund in order to pay for treatment.  

The good news is that Wendei became a health coach during quarantine and is using her knowledge to help others navigate this incredibly evil and scary world. We urge you to watch the documentary Under Our Skin on YouTube or Amazon to understand what Wendei and her family live with on a daily basis. Wendei has told us that her current protocol feels like she's going through chemo on a daily basis. She has contemplated taking her own life multiple times this year as she feels like she's a burden to her family and others. She has chosen to stick around to fight for her kids' lives. She also enrolled and was accepted into Valley College's RN program to fill her long time dream of becoming a nurse. 

Treatment costs a lot of money to say the least - she'll be taking her daughter to Cabo for a month to treat but won't be able to treat herself as there are no funds left. 

Why Wendei Needs (and Deserves!) Your Support

Wendei and her family are in the midst of a medical crisis and need extensive treatment and are trying to avoid filing medical bankruptcy as they'll lose their home.

Although she tries to put on a brave face and continues to operate her business, she lives in fear of losing her Wellness and Skin Care Center  she worked extremely hard to grow over the last 23 years and even more so now during COVID where she was only allowed to open for a week and a half and now can only see clients in the early mornings or evenings when it's not too hot - she's heat sensitive and is back down to 87 pounds and this morning learned she has low leptin which is common in anorexics - she's not - she just can't keep weight on or eat when she's feeling nauseous like chemo patients experience.

In her practice, Wendei has helped thousands of people not only feel better and lead healthier lives, but also she has touched people with her kindness and generosity. Wendei volunteered for many years as a skin care expert for women living with cancer at the Disney Family Cancer Center and in her earlier years worked as a peer counselor on a rape and battering hotline both in Los Angeles and in NY when she lived there in the 90's. She runs a FB group called SoCal Medical Detectives for Complex Medical Illnesses and is respected worldwide in the Lyme Community. She lives of life of Mitzvot (good deeds) and is at the point FINALLY where she's not embarrassed to beg for help. She has signed up as a distributor with three health related businesses to try and make extra money but as we know most people aren't able to work or their income has been significantly reduced. The family has been living off her husband's income for years but it's not enough anymore with everyone being diagnosed with the same stuff.

(Wendei performing a specialized, rejuvenating facial to a cancer patient at Walt Disney Cancer Family Center)

How Wendei Will be Changing the World with Your Support

Wendei is taking her activist determination and putting a face to the insidious “silent” killer that is Lyme. With the limited energy she has, she’s pouring it into helping others by spreading awareness to help find a cure for the thousands of people living with this disease, and the thousands who are and don’t know it yet. 

Wendei’s former work as a moderator with one of the most active Lyme groups in the country has enhanced the education of the community and brought people together. She opens her home to anyone suffering with Lyme and hosts support groups and informative sessions. Her blog, Living the Lyme Lie  has been receiving worldwide attention as she writes with raw honesty about her fight.

An avid researcher, Wendei’s mission is to educate the world about Lyme. She is a trailblazer who is willing to fight the medical community and insurance companies who continue to undermine the root cause of Lyme disease, misdiagnose and deny treatment. 



About Lyme and Mold Disease


Both neurological Lyme and PANS cause inflammation of the brain, severe neurological symptoms, seizures, involuntary body tremors, impaired muscle movement, flu like symptoms, joint, nerve and bone pain and immense fatigue along with severe anxiety, OCD and at times rage and suicidal thoughts.

Thank you for anything you can do, no matter how small, let's rally for this beautiful-in-every-way woman and her very deserving family.

- Nancy and Shannon

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Organizer

Wendei Smith 
Organizer
Los Angeles, CA