Karen was a vivacious young woman living the dream. An avid tennis and softball player, she loved doing yoga, had a private psychotherapy practice, and spent time between Redondo Beach and Palm Springs with her husband and their labradoodle Dood.
Her family lived in Texas but her beloved sister, Stephanie, a pediatric gastroenterologist, moved with her family to Redondo in 2012, close to Karen for the first time since high school.
That same year when Karen was just 42, things suddenly started to change. She came down with an upper respiratory infection and debilitating fatigue. Antibiotics only made things worse and her symptoms continued to progress. Within a year, she could hardly walk, her heart would race every time she moved. She had digestive issues, trouble breathing, suffered memory loss and word confusion, and was losing muscle control with a dragging leg and
Neurologists ruled out MS or a brain tumor; her sister suspected myasthenia gravis (MG), a neuro-muscular auto-immune disease, but a blood test ruled that out as well, leaving Karen, her friends and family baffled. Sadly, many doctors made her feel that it was all in her mind or refused to take her case.
Her condition progressed to the point that she could barely hold up her head and any exertion made it worse. “I felt like I was slowly dying,” says Karen, who worked hard to keep her emotional state intact and leaned on her sense of humor to help get her through.
Two years after the onset of her symptoms, a doctor recommended she try an intravenous aminosyn therapy. An online search led her to the Live Well Clinic, a naturopathic center in La Quinta owned by Sonja Fung, ND. Coming from a western medicine family, Karen was apprehensive, but had seen over seven medical doctors and nothing was making her better.
“When I met with Dr. Fung, she had already spoken to my infectious disease doctor and had reviewed my case in detail,” says Karen. “She said she thought she could do more than just the aminosyn, but I was skeptical.” Little did she know this meeting would help save her life.
Dr. Fung made a specific IV formula for Karen based on her symptoms and compromised immune system and it promptly worked to normalize her white blood cell and neutrophil counts. Karen’s infectious disease doctor at Stanford was astounded and asked Dr. Fung to send him blood samples to study. He had never seen anyone in Karen’s condition normalize immune counts like this.
“Before Karen came in for her initial consult, I knew we had a very difficult case on our hands and that we had to look outside the box if we were to make any progress,” says Dr. Fung. “In reviewing her case, I knew she already had a dysfunctional digestive system and was not absorbing her essential nutrients. Giving IV amino acids would only be one set of the many nutrient cofactors needed to jumpstart her system. She needed all the other cofactors as well, such as B vitamins, minerals, and key antioxidants, such as vitamin C, CoQ10, and alpha-lipoic acid to build her mitochondria (responsible for creating energy) and her white blood cells. I knew that if I could replete her with all of the building blocks, and work on her diet and digestive function, that this would be the best and crucial first steps.”
Karen continued with the IV therapies twice a week and soon added ozone therapy. “That is when I became a functioning human being once again. I could hold my head up and my legs stopped feeling like rubber and lead. After about six months, I could walk a couple of blocks and was able to return to work part time.
Dr. Fung methodically tried adding one therapy at a time to see what worked and encouraged Karen to follow an anti-inflammatory diet. “I was a naturopathic doctor’s nightmare existing on soda, pizzas and other unhealthy food – especially sugar! But I was ready to do everything I could.”
After working with Dr. Fung for two years and sustaining her progress, a muscle biopsy finally delivered an accurate diagnosis of mitochondrial myopathy, a debilitating and deadly disease primarily found in children which is rare in adults. With mitochondrial disease, minimal energy is produced and every muscle in your body (including your heart, digestive organs and blood vessels) is compromised. Karen’s sister, the pediatric gastroenterologist, had also suspected a mitochondrial disease and, once MG was ruled out, was able to send Karen to specialists to whom she refers her young patients.
“I like to say that I’m one of Jerry’s Kids,” she jokes as mitochondrial disease is more commonly known as a form of muscular dystrophy. She now sees mostly pediatric doctors for her condition. “Their waiting rooms are a lot more fun; they always call me in just when the Disney movie is getting really good.”
There is no cure and no specific treatment for mitochondrial myopathy, and her condition still baffles many western doctors who continue to question her treatment choices. “This is a progressive and degenerative disease. Before I found naturopathic medicine, the disease was progressing very quickly. What Dr. Fung did significantly slowed the progression and significantly improve my quality of life.”
In October, she received cord blood stem cells (extracted from placenta post-birth) in an effort to regenerate her deficient cells. They were donated by her step-daughter, step-son-in-law and new grandson, which she considers very, very special. “So now we are all blood relatives!”
“We have to get the word out about naturopathic medicine and an integrative approach to health,” says Karen. “There are too many people who have no idea that there are resources which can help them – and in many cases even save their life.”
She has learned a lot from her condition and that of others she meets in Live Well’s IV room. “Most of the people getting IVs have serious health conditions like Lyme disease, fibromyalgia and cancers, some deemed terminal, but we all have a special understanding of what it’s like to be suffering with chronic illness and Dr. Fung and Dr. Myers are doing a lot for us. We all support each other – especially when times get tough.”
She describes one patient with a rare stage 4 lung cancer (non-smoking related) who at 49 was given six months to live. Working with Dr. Fung, two years later she is cancer free. Her doctor at UCLA said he has never had anyone with that type of cancer survive more than six months.
Dr. Fung took a very skeptical western medicine family and turned them all into believers, says Karen. Her sister had a torn disc which western medicine protocol didn’t help. She tried PRP with Dr. Fung and was able to start exercising again.
Karen’s father was diagnosed with stage 4 pancreatic cancer and became incapacitated after his first three rounds of chemo. Dr. Fung recommended he try 1,000 mg of the herb curcumin three times a day, but his oncologist was reluctant. Karen’s sister stepped in to consult with his doctor on the science behind the recommendation, and after his next treatment, Dad was back to work. He did not experience side effects from chemo again, other than a little fatigue, and added more supplements recommended by Dr. Fung. Two years later, he is happy and still with us.
Karen continues on an evolving protocol of medications and supplementation as she and her team – her neuromuscular doctor, sister Stephanie, and Dr. Fung – continue to learn what others are doing for mitochondrial disease. She is also hoping to get into a third round clinical trial that she says would be “like winning the lottery.”
Karen also emphasizes the importance of the mind-body connection for healing. “If I had fallen into any sort of depression during this time, I don’t believe I would have survived. If I had an emotionally down day, the next day, I would be crippled.” She made a conscious decision to turn things around, finding gratitude in the midst of fear and uncertainty. “Instead of focusing on what I don’t have, I focus on what I do have – a great family, a loving pup, and naturopathic medicine that is helping to save my life.”
“Karen is an inspiration to us all,” adds Dr. Fung. “She continues to amaze me with her tenacity and the power of positive thinking. Her energy and humor brighten up the IV room and (she) draws out even the shyest patients. She has made some life-long friends in that room and at the clinic, and we are so blessed that she continues to be a vocal advocate for her health, mitochondrial research, and naturopathic medicine.”
For more information on mitochondrial disease, please visit www.umdf.org.
how can i get in touch with this doctor?
Thank you, Michelle. Dr. Fung is with the Live Well Clinic in La Quinta, CA
With appreciation ~
What an inspirational story, especially for those living with mitochondrial disease. Two statements jumped out at me, though. One is that mitochondrial disease is rare in adults and the other is that is a form of muscular dystrophy. Mitochondrial disease does affect more children than adults but is certainly not rare in the mitochondrial community, and it is under the umbrella of services provided by MDA but is not the same disease as MD.
Thank you for that information and for reading Desert Health. We will pass this information along to Karen.
With appreciation ~
Lauren Del Sarto
My adult son has mitochondrial disease and I would be interested in pursuing some alternative therapies. How would I go about finding a practitioner in my area?
Thanks for your comment. The majority of mito patients are children. I could not find any adult doctors to take my case because it is primarily pediatric specialists that work with mito. Adult mito is on the rise…mainly because people are becoming more aware that this disease can affect adults. The idea is to keep spreading the word! In terms of finding help for your son, you could schedule a phone consultation with Dr Fung. She can give you her opinion on his case and steer you in the right direction. Good luck!
Kim, Many NDs are capable of helping you. You can find a licensed naturopathic doctor in your area via their national association:
Thank you for reading ~
Lauren Del Sarto
This is Dr. Fung. My clinic is Live Well Clinic in La Quinta, CA
https://livewellclinic.org/. If you are not in this area, we do offer Skype video consults. Please give us a call at 760-771-5970 if you have any other questions. We would be happy to help.
Such a motivational story. So glad Karen is getting help and is having a better quality of life. I was wondering where she went to get her muscle biopsy and what doctor did it.
Hi Paige. Thanks for your question. Sadly, I had to go around the system to get a muscle biopsy. Because I had a negative whole exome, no neuro-muscular doctor would take my case. These were all pediatric neurologists. My genetic doctor was willing to write the order for the muscle biopsy. I was lucky that my brother is a doctor in Houston and has a colleague that is a neuromuscular doctor that does muscle biopsies. He performed mine. This is why I want to share my story…not only to discuss how integrative medicine helped me, but to bring awareness to this disease. There are way too many people floundering by not being able to get the testing done that they so desperately need. It is a common story in rare diseases. Wishing you all of the best!
I have miti damage from Fluoroquinolones. Could Dr. Fung help me?
She helped me…I am sure she could help you too. You can do a phone consultation/appointment with her and she can discuss your case with you and give you her opinion. I would not be alive today if I had not pursued integrative medicine. I wish you the best of luck!
Jan – I forgot to mention in my previous response that the antibiotic that made me worse was a flouraquinalone – Levaquin.
Very inspirational. Very similar to my journey although differing diagnoses. Still looking at mitochondrial but many ruled out. No biopsies yet. Neuropathy throughout with no answers. Ehlers Danlos Syndrome, Mast Cell Activation Syndrome and much much more. I have always leaned on humour and positivity to get me through. My motto has always been to keep smiling and one foot in front of the other. Both can carry me through anything and lift me until I can carry my own. We give credit to the natural methods for the recovery I’ve had thus far. If I’d depended on the medical system, I’d either still be living much more disabled, if not worse, or dead. I’m a complex complicated healthcare workers nightmare! Karen I’m very happy for you. It opens up our true realities but we can prove medicine inadequate or even detrimental. Keep on keeping on Karen. Every day is a gift not to be taken for granted.
Thanks for sharing Debra. It sounds like we have very similar stories. I too have MCAS. My sister is an expert in MCAS – she is the one who diagnosed me. I’m on a lot of meds for MCAS – but they have been a big help. I wish you the best of luck!!!
Karen, I’m a family best friend of your parents and also shared the medical profession as the wife of your Dads friend, Fred! I have a medical condition but am using the alternative medicine approach for it and live my results!
You Ho Girl!!!!!
Hi!!! I know all about you and Fred and I know we met many years ago!! It’s great to hear from you. My dad loved you both sooo much. Thanks for your comment and if u ever need any alternative medicine insight- please let me know!!!