This last business year has been tough for Leo and Liseth, who have three children, Joann, Lizzy, and Ian. More than ever, this is the perfect time for us to be together and for him to rest as well. Leo joins me on the Dr. Rau diet and is really impressed with how good he feels after just one week. He leaves Switzerland with so much excitement about healthy eating that he brings home Dr. Rau’s cookbook and the various spices and herbs listed in it to encourage his entire family to try the diet. Leo is introduced to this change in lifestyle and takes it very seriously because he sees me sick. I guess we’re not open to getting educated about or paying attention to things until someone you love gets hurt.
The three weeks in Switzerland are a great learning experience and the various treatments definitely strengthen my overall health and give me more energy. Yes, I made progress. But is it good enough to get on with a productive life? No. It seems like all the treatments I’ve done so far create certain shifts because they improve my strength and lower my inflammation, but unfortunately this doesn’t last. I leave Paracelsus with thousands of dollars’ worth of biological medicine that I can’t buy in the United States, like homeopathics for my IVs, injectables, pills, and a complex protocol. But it’s hard to integrate this into my day-to-day life at home. I’m sure this is difficult for anyone who is sick and even tougher when you’re dealing with brain dysfunction. I’m overwhelmed and confused. I have trouble putting all the pieces of the protocol in action. The bottom line is that Paracelsus wasn’t a magic bullet for me, and I’m learning that even the best clinics in the world cannot cure chronic Lyme. There is very little magic in the world of the chronically ill. Believe me, these are sobering realizations.
October 5, 2013
Getting knocked off my socks by
#LymeDisease last year was the most
humbling experience in my life so far.
#SelfReflect #Searching4ACure
One morning downstairs in the kitchen, I gaze out my favorite window at the beautiful blue ocean that forms the backdrop to my countertop, which is covered with countless bottles of medicine. I’m annoyed by how this reminds me of my unsolved puzzle. It’s difficult to understand or accept that I can work diligently and yet none of the hard work is paying off. I’m not just upset about my OWN health. The longer I travel on this journey and the more research I do, the more I learn about the many Lyme patients whose lives are destroyed. Hundreds of thousands of people deal with this silent killer, but nobody can help us? Helllllooooooooooooo! Knock, knock! Where is everybody? Why isn’t anybody standing up for what is right? Why isn’t anybody answering questions about this mysterious disease? And where is the Centers for Disease Control (CDC) in all of this? Why are their guidelines more than a decade old? It’s so disappointing to think of all the celebrities and rich folks in this country who have Lyme and, as a result, could use their platforms to raise awareness and help our cause in the same way they have done for AIDS and cancer, among others. Many of these people share their stories with me, yet they don’t want to share them with the world for fear that it might tarnish their careers. Ironically, this could actually be the most important contribution that we make to the world! I agree that it’s not fancy or glamorous, but it’s morally the right thing to do for our children and their children. Staying quiet just adds more power to the invisible chronic-Lyme snowball that tears people’s lives apart!
All of this brings out the rebel in me, the side of me that says, “Fuck you all.” Excuse my French. I’m going to find a cure for this disease, and nothing and nobody is going to stop me. I will not allow anyone to shut me up or shame me into silence, and I’m not going to rot away behind closed doors either. Instead, I will continue to talk, post, and blog about it until my message is heard. This is a living nightmare without an end in sight! I can’t even put into words the frustration I’m feeling right now. I just want to scream from the rooftops until I find someone who is willing to listen and has the power to make a change for all of us. I do feel extremely cautious about sharing details of the privileged and expensive treatments that I’ve undergone. I don’t want anyone to waste money on treatments that are not the cure we are all looking for. Writing this book gives me an opportunity to share, and you can draw your own opinions about things that might resonate with you. Of course, always with the advice of a medical professional.
Chapter Seven
I DON’T WANT MY PAIN AND STRUGGLE TO MAKE ME A VICTIM. I WANT MY BATTLE TO MAKE ME SOMEONE ELSE’S HERO.
Back home means back to business wearing the mommy, wife, and property manager hat again. But my body and brain continue to decline rapidly. I need a new plan of attack, so I call Dr. Piro to discuss my persistent brain issues. Once again! He refers me to Dr. Bradley Jabour, a nationally recognized neurologist who has been a professor and chief of neuroradiology at UCLA Medical Center. He’s said to be a pioneer in various kinds of MRIs and scans to evaluate neurological disorders of the brain. This sounds like something that could give us new information, so I make an appointment immediately. The functional MRI that Dr. Jabour does reveals inflammation and inactivity in the left frontal lobe of my brain and my decreased brain function. It’s around the holidays, and this is the best Christmas present I could get! Obviously, damage in the brain sounds scary, but at least these results validate that I have not lost my mind. My brain function is lacking because of the inflammation from the infection. This is what I’ve been saying since the first day I got sick. I told you so! I’m grateful to receive this news because it gives me a new direction to fight. Even though I’m not sure what it all means, things can only go up from here. At times, it’s challenging to find the purpose in the cards life has dealt me and make sense of it all. Yet I have no choice but to accept my new normal as I continue to visualize the energetic, athletic, and multitasking woman I once was. I’m starting to forget what it feels like to be her.
Even though Dr. Jabour admits that he’s never treated anyone with Lyme brain, he thinks that I can benefit from something called TMS, which means transcranial magnetic stimulation therapy. He is conducting a clinical trial on TMS and has a 70 percent success rate, so I feel lucky to be able to participate. For six weeks, Alberto drives me to the clinic every day except Sundays. With a special high-tech tool, the doctor can see my brain on a screen to accurately pinpoint the underactive area. His sweet nurse marks this with a blue pen and then aims a magnetic-pulse device on that spot. The magnetic pulses stimulate areas of the brain that are underactive in patients with brain injuries or disorders. It feels like a woodpecker pecking at my brain. It hurts a little, but it is more annoying than painful, especially after an hour and a half each day. The treatments are exhausting, and I keep falling asleep during them. However, the nurses want me to stay awake because I’m instructed to read a list of words and envision a specific thought to go along with them.
On my Bravo blog, I write, “Unfortunately I won’t be able to write a blog as my brain is out of order at the moment. I have started an intense treatment to try to repair the damage the Lyme has caused neurologically. Unfortunately, I’m experiencing worse symptoms than before the treatment started. But I was promised that it would get worse before it gets better. My apologies for not being able to pull it together—hope to be back at it next week.” However, things get only a little bit better. After the six weeks, my mood seems calmer and my brain function is a little more accessible, but, once again, it doesn’t last and certainly is not a cure.
I miss my horses. I miss my life and all things familiar to me, so on my way home from one of my TMS treatments I stop to see Bella ride at her barn in Calabasas. Even though I gave up horseback riding when I moved to Malibu, I love to sit ringside surrounded by the familiar smell of the horses. I have so many happy childhood memories associated with this scent that it instantly puts my soul at ease, providing a calmness and realness that I cannot get anywhere else in the world. My girls and I built a lifelong foundation, and one of our deepest bonds was created around
our horses and the responsibility of taking care of them. Both Bella and Gigi are nationally ranked equestrians in their age divisions, but Gigi never thought of making it her career while Bella always did. The barn is her happy place, and her whole life’s focus has been on horse showing and building a future around that. We talk about finding a college where she can bring her horses, and she dreams of and works toward participating in the Olympics as well as being a professional equestrian. I support that dream because it has always felt right in my gut.
Nevertheless, when I watch Bella ride that day, something feels off. She gets very winded after jumping her round, something she is trained to do and has done her whole life.
“Bella, are you okay? You’re so so out of breath, my love,” I say.
“I don’t know, Mommy. I’ve been feeling really tired lately. But I’m just trying to power through it,” she says, smiling. I leave the barn puzzled and a little bit worried, but not on my game enough to take action.
A week later, Bella calls me, crying, from a horse show at the Los Angeles Equestrian Center to tell me that she had a bad crash and hurt herself.
“It’s okay, my love, that happens to the best of us,” I tell her. But when she gets home that night and shows me the enormous bruise that covers her entire right thigh and buttocks, I practically have a heart attack. Never in my thirty years with horses have I seen a bruise that big. I call her trainer, Jenny, the next morning to find out what happened, and that’s when I discover that I’m clearly not the only one who is concerned. Jenny feels that Bella’s performance has gone down over the last three months for no apparent reason. This is shocking. Just one year earlier, I bought her Lego, the horse of her dreams, and they were a winning combination everywhere they went. So is it the horse? Or is it Bella? What’s going on?
I start to watch her more closely. Even though she looks fine, her performance tells a very different story. Bella has been horseback riding and competing since she was three years old. It’s as natural to her as walking. When you jump horses, it’s all about rhythm and counting, and your brain needs to be on fire in order to perform. But Bella’s brain seems to have lost the perfect count it always had, and she’s making calculation mistakes. I let it go on a little bit longer, but one day I wake up with this strong intuition that I have to take her off her horse so she can take a break to regroup and figure out what is going on. For now, riding six days a week requires too much from her both physically and mentally.
I’m afraid to tell her because I don’t want to break her heart, but I also don’t want to lose my child in a riding accident.
“Bella, you need to take a break and start focusing on other things,” I tell her.
“What do you mean, Mommy?” she says, with tears in her eyes.
“I don’t mean to sound insensitive,” I say. “But I think something is off with your riding, and we need to figure out what that is.” She is devastated. But how can I let her make one more mistake? How can I let her fall one more time? She listens to me and stops riding but feels like her whole world has come crashing down. The thought of not being able to fulfill her dream is a huge blow to her self-esteem, and she gets really depressed. She’s losing not only her dream but also her identity. It’s hard for Bella to imagine who she is when she’s away from her horses and out of the riding britches and dirty boots she has worn since the day she could walk. This is the start of a rough time for my baby girl.
It’s an overwhelming time for me, too. Not only am I trying to keep my own head above water, but I also have to figure out what is wrong with Bella. Dr. De Meirleir happens to be in Reno doing clinical research at the University of Nevada. He diagnosed me and changed the path of my journey, so I know that I have to take Bella to see him. I don’t want to waste time taking her through the traditional medical system for fear of missing a proper diagnosis. I pull it together and fly her to Reno. Our appointment is that afternoon.
“Bella, can you share your symptoms with me?” Dr. De Meirleir asks.
“Brain fog, exhaustion…,” she says politely. Then she turns to me. “What else, Mommy?” It’s hard for her to remember her symptoms, a frustrating situation I know way too well. Therefore, I made a list for her on my iPhone before we got to the appointment.
“Shortness of breath, trouble focusing, and pain along her spine that is so severe she sometimes cries herself to sleep at night,” I read from my list. He takes a long time examining her and does extensive blood work for various tests that are done only in European labs.
Six weeks later, results reveal that Bella has neurological Lyme also.
Even though she grew up in the barn, I never saw a bull’s-eye rash on her or a tick, for that matter. This is devastating news, and I feel trapped with a sense of helplessness like none I’ve ever felt before. Now I have not ONE, but TWO children with Lyme and no cure. Having seen the suffering of many children during my journey, I’m distraught, to say the least. It’s one thing to be sick myself, but when my children get diagnosed, knowing there is no cure, THIS IS A GAME CHANGER. Of course, I’m scared to death, but this news motivates me to fight like I’ve never fought before. I know that it’s up to me to figure this out and keep them going. I’m going to scour the earth until I find a cure for them. I feel very alone in this because David is busy in the studio and Mohamed is not good at dealing with illness. He’s highly sensitive and can’t deal with the suffering of his loved ones, so instead he’s in denial about what has been really going on.
This brings me to one fascinating part of raising a child with an invisible disease that the outside world does not understand: Bella can rest for sixteen hours and then get up and go hang out with her friends. There, she snaps a selfie of the thirty happy minutes of the day when she’s able to lift her head off the pillow and posts it. This creates a very different perception of reality and immediately gives people an opportunity to judge. “See? I told you she is fine. She looks happy in that selfie.” Or, “If she can go out to dinner, she can go to school.” The list of critical comments goes on, but no one should judge a child’s journey. People don’t seem to understand this, but it may be part of “you don’t get it until you get it.” Regardless, it’s my job to be my children’s guiding light and, hopefully, lead them to victory.
Dr. De Meirleir prescribes a combination of different antibiotics for Bella. Initially, I’m panicked, so I start her on them. But we stop after three days because her Herxheimer reactions are so severe and my intuition isn’t sold on this protocol. Long-term antibiotics have not proved successful for me or anyone I know with chronic Lyme so I feel extremely cautious about treating my children with these drugs. I worry about ruining their guts with a long-term antibiotic protocol. I’m starting to use my own experience to try to help guide their treatment as best I can as their caring mother, so I begin both Bella and Anwar on a holistic protocol with antibiotics such as silver, a regime of herbs to treat Lyme, and IV protocols to boost their immune systems.
In the midst of this, the holidays are coming, and all I want to do is hide under the covers and wake up on January 1 because I feel completely shut down with anxiety and exhaustion. However, mommy duties are calling, so once again it’s time to pull up the bootstraps and try to keep it together and create some sort of normalcy in the midst of this storm. I force myself to go with Alberto to buy a tree. Not having this traditional symbol of the holidays would disappoint my children and really make me feel like a loser mom. It takes me five days to do the same decorating that the old Yolanda used to do in one afternoon. Still, once it’s finished, it feels like a huge accomplishment to see my children’s lifelong Christmas treasures hanging on the fresh-smelling branches of our ten-foot tree. The house feels somewhat normal because it looks beautiful and festive, but I have to admit to myself that I can’t do much more than this. I used to start shopping in November, but there’s no way that I can run around to buy presents. I feel bad for being such a downer, yet that all seems so meaningless to me right
now. I talk to the children about this and they understand. The circumstances of our family life with Lyme are affecting everything, and they’re feeling it. Still, instead of feeling sorry for themselves, they decide to volunteer and serve food at the homeless shelter in downtown L.A. on Christmas Eve, which puts everything in perspective and makes me so proud. They come home late that night tired, inspired, and grateful for the lives they live. I’m thrilled with this free pass and the pressure it takes off me. It makes this year’s Christmas more about togetherness, cooking, watching movies, and being grateful for all the important things that money can’t buy.
Chapter Eight
SILENCE
My next attempt to get better is probably the most hideous protocol of this entire journey. It’s recommended by my dear friend Chris Cortazzo, whom I love and respect very much. His mother has survived cancer.
“Richard Helfrich brought her back to life after chemo,” Chris says. “She’s been in remission for ten years now.” He hands me four books by Richard Helfrich about rebuilding the immune system. Although some of the treatments and protocols I do may seem crazy and are way out of the box, I don’t do any of them on a whim or haphazardly. Tom is my quarterback in the research department. He helps me look up any ideas and we carefully weigh their pros and cons. So, of course, Tom and I do some digging on Richard. We learn that he drastically changed his own health after being diagnosed with cardiomyopathy, a serious heart condition. Using an alternative approach, Richard healed his heart over the course of five years. In the decades that followed, he says he’s used a similar program to change the lives and health of thousands of patients. It makes such a huge difference when you work with doctors and practitioners who have battled their own war. Somehow it humbles them and makes their heart grow with compassion. It’s a beautiful thing to see or better said to feel, like there is a deeper understanding when they have walked a similar journey.
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