“In fact, they’re off the charts,” he says. He recommends I stop eating sushi for the next six months. Although it’s my favorite food and Nobu Malibu is my favorite restaurant, this resonates with me. David Allen also makes me special vitamin packs based on my blood work and any deficiencies he saw while analyzing it. I follow strict directions and use his supplements religiously, but without very noticeable results.
A couple weeks later, exactly six weeks to the day of the testing I did in Belgium, on December 5, Dr. De Meirleir e-mails to say that he has the results of his medical detective work. He schedules a Skype appointment with me for eight tomorrow morning. I wake up early, excited about what Dr. De Meirleir has to say. Ready with pen, paper, and a tape recorder, Tom, David, and I anxiously gather around the kitchen table.
“The good news is that you don’t have chronic fatigue,” Dr. De Meirleir says. “The bad? You’ve probably been sick for a couple of years with severe, chronic neurological Lyme disease.”
“Neurological?” I say out loud, more to myself than anyone else.
“Yes. It’s called neuroborreliosis. The Borrelia spirochete IgM serology is positive, meaning that there is a current and active infection in your brain,” Dr. De Meirleir says. I have goose bumps all over my body. This resonates with every part of my being!
“You also have several coinfections,” he continues and then lists them: Chlamydia pneumoniae, Chlamydia trachomatis, Versinia, and Coxiella burnetii, but I barely hear any of it. The words fly by and time stops. All I hear is someone confirming that I actually have an infection in my brain. This is exactly what I’ve been trying to tell everyone since before my wedding. I knew it! I try to focus on the rest of the information. Thank God Tom is recording it, because they lost me for a minute.
“Because you’ve carried this for a long time, it’s gotten deep into your tissues and cells,” Dr. De Meirleir adds.
“Whoa. How did I get this?” I know Lyme is a tick-borne illness, but I’ve never seen a tick on me or a bite.
“This also explains your loss of brain function. Lyme in the brain is in the syphilis family, and the cells of encephalitis in your spinal fluid at Cedars-Sinai confirm that as well. It all makes perfect sense.”
“But they did two Lyme tests at Cedars,” I say. “And both were negative.”
“Yes, they did. But the tests they do in the U.S.—the ELISA and the Western blot—aren’t always sensitive enough to pick up on chronic Lyme.” Dr. De Meirleir explains that the Western blot uses electricity to separate specific blood proteins into bands, which look sort of like a bar code. The lab compares your band pattern to what the CDC has deemed the typical one found with Lyme. According to the CDC, you need five of the ten bands for a Lyme diagnosis. However, some of the bands are more meaningful than others, so if you have one of these bands without the others you could still have Lyme. Another issue is that not all the labs use the same method to analyze the Western blot, so you can get a positive result if your blood is sent to one lab and a negative one if your blood is sent to another. With Lyme, your only chance for a cure is at early detection, because once you pass the stage of an acute diagnosis and it goes untreated, the Lyme spirochetes set up camp in other places and leave only little traces in your bloodstream.
“This is exactly what happened to you, Yolanda. The bacteria are in your brain and it was too late for either test to detect that,” Dr. De Meirleir says.
“So now what?” I ask. Even though I feel relieved to know that I’m not crazy, how are we going to fix this?
“Let’s begin with ninety days of IV antibiotics and go from there. Even though your chronic case will take a lot more than that, it’s a good start.” All I hear is ninety days.
“Ninety days?” I exclaim. Don’t get me wrong, I am grateful for a diagnosis. But ninety days? I have a life to live. I’m a mother, a daughter, a newlywed, a stepparent, and a reality show cast member. I have children and a husband to care for, horse shows to go to, basketball games to attend, a product line to launch, a big home to manage, friends to see, and work obligations to fulfill. Forgoing three more months of my life seems insane. Initially, it’s hard to wrap my head around, but the clarity of my diagnosis also gives me a new “fuck you” attitude.
“You need various oral antibiotics, but since most of these don’t cross the blood-brain barrier, they won’t do the job alone,” Dr. De Meirleir says. “I suggest you get a port as soon as possible and start a combination of ninety days of IV antibiotics as well.” He prescribes Ceftrixane, tindemax, telithromycin, and diflucan to start with.
We immediately consult Dr. Jeff Harris, a Malibu internist. Oddly enough, Dr. Harris diagnosed and treated David with Lyme two years earlier. Yet after a couple of months of doxycycline, David seemed fine. Dr. Harris and Dr. Piro are going to work closely with Dr. De Meirleir to help me get back on my feet, hopefully ASAP. The next day, I have the port surgically implanted on the right side of my chest. This will allow the nurse to administer a combination of IV antibiotics and other medications into my bloodstream several times a day and hopefully they will cross the blood brain barrier. I don’t think twice about the protocol. I’m convinced that it’s my only chance at ridding my body of this silent spiral-shaped killer that has so obviously confiscated my brain. He also prescribes steroids to help my chronic cough, something none of my doctors here in Los Angeles have been able to figure out. The Chlamydia pneumoniae finding explains it. The crazy thing is that I’m not alone in getting a negative test result or going undiagnosed when I actually do have Lyme. This happens to 56 percent of people when the CDC’s two-tiered testing system fails us!
Given my rigid and determined personality, I believe that if I take my antibiotics perfectly, I will be cured in three months. Throughout my life, I’ve always viewed antibiotics as something you save for when you really need them, so I have always used mostly holistic medicine. I hope this will make my ninety-day course even more effective. I have a new spark of hope and what I truly believe is a cure. If I get through the ninety days, I’m home free. I’ll be back in the gym, eating my healthy diet, and returning to the game of life.
At first, a nurse comes to my house twice a day to administer the IVs, but eventually David and Blanca learn how to do it. David also keeps a perfect daily log of each dose and my resulting symptoms in the aqua book on my nightstand. Tom is at my house often, researching this diagnosis and its treatments just to make sense of it and get educated. For now, he is the brain that I’m missing. He prints out lots of articles on chronic Lyme, and we soon learn about the controversy surrounding it because some people say chronic Lyme doesn’t exist. It’s hard for me to understand and comprehend, but I definitely feel for this misunderstood community and identify with them, since it took so long for me to get properly diagnosed.
Nobody in my inner circle has any close or personal experience with chronic Lyme disease. I’m eager to learn all that I can about it, but my brain can’t retain too much information at this time, so I have to read things two or three times just to make them stick. That’s why I prefer Tom to sit by my bedside and tell me about his research. Anwar is very curious about Lyme and wants to understand, so he does his own online research. But, in line with his sweet personality, he shines light only on the positive outcomes of treatments that he finds and the success stories and doesn’t tell me about the dark and negative things he reads. God, I love this boy. His name means “light,” and that’s really what he is to me every day of my life. Everything might not be perfect right now, but I’m blessed.
Part of my contract and obligation to Bravo as a Housewives cast member is to watch the show when it airs and blog after each episode. Even though I am diagnosed and dealing with Lyme in the off-season when the cameras are not rolling, it’s important to share what’s going on with me in real time. In one of my first blogs, I write, “I feel a lot of comfort in finally having a diagnosis that I can fight head-on! It will require many months of intravenous antibio
tics and immune therapy, but I’m very optimistic and ready to fight the good fight.” I always try to find the positive in every situation, but the days that follow are brutal. I can’t get out of bed, and I feel as if the life and energy are sucked out of me. Just going up and down the stairs for breakfast feels like Olympic training.
I never read the little white paper inserts that come with prescription drugs because they make me not want to take the medicine, and, to be honest, my doctors don’t really explain the severe side effects that occur from treating chronic Lyme. My migraine is a pounding heartbeat in my head, and I have been throwing up for days, so much so that I become weak and dehydrated. David checks my blood pressure. It is unusually low. He is uncomfortable with this, so he calls Dr. Piro.
“Larry, I’m worried about Yo being on this much medication,” David says. “It’s making her really sick. She hasn’t eaten for days and keeps vomiting.”
“Bring her to the ER at St. John’s. I’ll meet you there,” Dr. Piro replies. Upon arriving at the hospital, my room is ready and I’m admitted. When the hospital staff starts calling you by your first name, you know that you come here too often! They’re all so nice and I have a whole new appreciation for the nurses who kindly dedicate their lives to caring for others. They immediately start running large bags of fluids. Dr. Piro knows how to treat my migraines by now, and he also prescribes Zofran for my nausea and orders labs to try to understand what is going on. I don’t bounce back as fast as I usually do. It takes days for my migraine to dissipate.
“Can I have some chicken soup, please?” I ask Susan, my nurse. I’m starving, which is the first sign that the couple of days’ break from my antibiotics is exactly what I needed.
I learn that when you start such an intense course of antibiotics, you get a severe reaction called a “Herxheimer” or “die-off” reaction. When enormous populations of bacteria are killed off with antibiotics, they release endotoxins and biotoxins into the blood and tissues faster than the body can handle it. The immune system responds with a range of awful symptoms: fever, chills, muscle stiffness, very low blood pressure, severe headache, hyperventilation, rapid heartbeat, flushing, muscle and joint pain, skin outbreaks, and anxiety. My body feels like a toxic waste dump with many of these severe side effects. But supposedly the bigger your reaction, the better. Well, I must be doing the right thing because it’s a rough ride and a rude awakening. I can’t even find the words to describe what “herxing” feels like except to say that it is like having the worst case of the flu times ten, being hit by a truck, being run over by a train, and ending up in the washing machine on spin cycle. As the days go by, my symptoms start to ease. Besides being dehydrated, my white blood cell count is severely low, which is nothing new. One afternoon I wake up from a long nap. I look out my hospital room window and notice it’s a beautiful sunny day with bright blue sky but I feel sad and trapped until my kids arrive. They snuggle in my bed. They tell stories and even show me some new dance moves with their new favorite songs. It’s funny how my children and I never run out of things to talk about.
“I was actually hoping someone would bring me a Starbucks and slice of banana bread,” I tell them.
“Well, that means you’re getting better, Mommy,” Gigi says.
The next day, I get released from the hospital after a six-day stay. Many nights thereafter, I lie on my bathroom floor, shivering from head to toe as if demons have taken over my body. The biotoxins in my brain make me feel as if I’m going crazy, like I am lost in space and time. I desperately need to ground myself back on Mother Earth so sometimes at night, when I’m home alone, I go outside to my backyard in my underwear with my warm blanket to lie on the grass, where I can hear the waves crash on the shore and stare at the stars and the moon. People might think I’m insane, but I feel like I lost my connection to the earth, and this is the only way I experience some sort of grounding in my spirit. I am determined and 1,000 percent committed to this protocol. However, I’m not going to lie: this is probably the hardest thing I have ever done. I’m fighting not only Lyme but also myself. I impatiently count the days of my protocol. I want a faster way to heal. I want to get back to my life. Most of all, I want control over my body.
Antibiotics also kill the good bacteria in the gut, which causes severe yeast infections. I have yeast coming out of everywhere including my ears, my mouth, and my vag. In fact, my tongue is covered in a white film as well. I try to drink a lot of water but keep getting severely dehydrated from bouts of diarrhea and vomiting, which we now learn to treat with extra IV fluids and vitamin drips at home. It’s a truly miserable time. Interestingly, the antibiotics that I THOUGHT would be the answer to my prayers are actually making me so sick that I feel as if I am going to die. Through all of this madness, I still struggle with sitting on the sidelines of my life and feeling bad for not being productive.
“David, do you think I’ll ever be normal again?” I ask. Trying to make me feel optimistic, he gets the journal from my nightstand and reads parts of the daily log he’s been keeping. I can’t feel it, but he says that I’m making progress. Of course, I believe him because he is my lifeline right now.
“We’re in this together, baby,” he often says. That may be true and I’m so grateful, but I also know that I’m not even close to the strong Dutch girl David met seven years earlier.
Thank God for my core group of real friends, who never give up on me and never stop visiting, because a lot of other people do. The lack of consciousness in this town is something I have always felt but I am finally starting to see it clearly. In late December, I ask Paige to help me decorate my Christmas tree. I am miserable but the holidays are my children’s favorite time of the year. I am the only one in charge of keeping our Christmas traditions alive so when Paige walks into the family room, I’ve got my IV running while I’m up on a ladder trying to hang ornaments in my pajamas and Uggs.
“Are you nuts?” she says, rushing over to hold my legs.
“I have to,” I say.
“Let me do it,” Paige insists. Then she starts laughing.
“What’s so funny?” I ask. She points to the fuzzy robe and the infusion pump in my pocket connected to the port in my heart. Yes, I’m a crazy sight, and it’s taking three times longer than usual to decorate my tree but I am determined because it’s for my kids.
“Please get off that ladder and take a break,” Paige says. “Just point to where you want each ornament and I’ll do it.”
“Fine,” I say. I know she is right, and she’s the only person I would let do this task. I sit in a chair by the fireplace while she rummages through the box of ornaments. A fire is burning and we’re having hot apple cider to keep the holiday spirit going. I watch Paige trying over and over to attach one of the metal hooks to the top of an ornament, but she can’t seem to get it in. Something is strange. I also realize that she’s repeating herself multiple times while telling the same story.
“Paige, are you feeling okay? When was your last checkup?” I ask.
“I don’t remember,” she says, shrugging.
“Something’s not right with you, cowboy,” I say. “Have you noticed that?”
She nods. “I’ve been feeling off for a while but thought it was post-traumatic stress from my divorce,” she says.
“Mmm, that could be but something doesn’t feel right, so let me call Dr. Harris,” I say. His office is right here in Malibu, and he’s an important part of guiding me with my new protocol. This simple country doctor is very smart and probably more Lyme literate than any other doctor in Los Angeles. I get Paige an appointment to go in for a large panel of blood tests the next day. Paige, Blanca, and Alberto finish the Christmas decorations. I honestly couldn’t relax until it was done. So much has changed in my life that I fight with all that I have against change in my children’s lives.
When Paige’s test results come back from Dr. Harris a couple of weeks later, we find out that she has Lyme disease and many co-infections, too! Dr
. Harris immediately puts her on oral antibiotics and starts monitoring her closely. I’m glad there is a proper cause for her symptoms but it is a shocking revelation. What are the chances that BOTH of us have Lyme? One in a billion? We were pregnant together, raised our children together, and now we have Lyme together?
Chapter Four
FOCUS ON YOUR GOAL. DON’T LOOK IN ANY DIRECTION BUT AHEAD.
The standard treatment for Lyme disease is twenty-eight days of antibiotics, and most insurance companies won’t cover any more than that. After twenty-eight days on a cocktail of four different antibiotics, I don’t feel any better. In the midst of this, I’m obligated to write my weekly Housewives blog. It’s difficult for me to focus and even harder to form an opinion about the craziness that takes place. It all seems frivolous compared to what I’m going through at this moment. Most of the time, it takes me a whole week to type a couple paragraphs, which causes me a lot of stress because I feel blocked in my communication. In one of my blogs, I write, “On day 40 of my IV antibiotic treatments, almost halfway. I’m starting to see the light at the end of the tunnel and hoping to get back to my normal life sooner than later.” I sound positive and like to talk myself into being more hopeful than I really am. At the sixty-day mark, I notice some improvement, but it is really minimal. With the little that I do have, I put a smile on my face and pull up my bootstraps. Gigi and I are heading to New York in a few days to visit the New School and meet with modeling agencies. We missed the college tours last year because I was too sick, so we are excited to finally go and check it all out.
I remember when the kids were little, I was obsessed with dressing and styling them in cute outfits just to photograph them at the barn, the beach, or wherever I could catch them. They got so used to the camera that it was part of life in our household. But Gigi was the only one who actually liked our photo shoots, and, from the time that she was a little girl, I knew that she was going to be a model. From the ages of four to ten, I let her do a few jobs for Guess because it was my friend Paul Marciano’s company so it felt like a safe place for her to work and learn about life on set. My little social butterfly loved everything about it: the stylist, photographer, makeup artist, motor-home driver, food, and teacher. She was fascinated by it all and fit right in even though she was very young. However, I felt strongly that she wait until she turned eighteen to start a modeling career.
Believe Me Page 7