Chapter Seventeen
CREATE A LIFE THAT FEELS GOOD ON THE INSIDE, NOT ONE THAT JUST LOOKS GOOD ON THE OUTSIDE.
My current protocol, administered at Dr. Holtorf’s office, consists of doing the ten-pass ozone along with glutathione and cell peptides, which are said to strengthen different parts of the body, including the thymus, brain, liver, adrenals, uterus, and ovaries. This cocktail combined with IVIG seems to give me a nice, temporary boost in energy and calms my nervous system.
The next thing on my to-do list is a tonsillectomy. From my earliest appointments with Dr. Klinghardt, his testing revealed that there are chronic low-grade infections in my tonsils. One of these is PANDAS, which stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. These kinds of infections are hard to detect, especially when you don’t have symptoms, but they can spread to other parts of the body, particularly the brain, and cause inflammation as well as focal infections. This is common for Lyme patients and others with chronic illness. For me, an infection in any part of my body above the neck could contribute to my brain dysfunction and be a block to complete healing. The fascinating thing about Dr. Klinghardt is that he’s not just brilliant and full of wisdom; there’s also something about his testing that is genius on a whole other level. He finds things first and then has them fact-checked by conventional testing. He told me I had PANDAS before the Cunningham Panel confirmed it.
Since other treatments, procedures, and protocols were more of a priority, I have canceled and rescheduled the tonsillectomy three times over the past year. Every six weeks, Dr. Klinghardt injects my tonsils with procaine and ozone, and a smelly pus comes out and drains into the back of my throat and gut. So even though my tonsils never hurt or bother me, the injections are just a temporary Band-Aid rather than a permanent solution, which is why taking them out is the right thing to do. I nurtured both Bella and Anwar through the same surgery in the past year and saw that it cleared up a lot of their symptoms, like chronic throat issues, minor colds, enlarged lymph nodes in the neck, and brain fog. For myself, on the other hand, I have reservations about having a tonsillectomy at the age of fifty-two. Yet I can’t put it off any longer. June 10th is booked. No more escaping this time.
My body and soul are rested, and the surgery goes well, but I’m not going to lie, it’s a tough one. The pain kicks my ass! On the first day, I don’t eat at all. The next day, Anwar makes me his amazingly delicious iced watermelon, aloe vera, and raw honey smoothie. It relieves the pain and tastes like heaven, so that’s all I eat for the next week. While still healing from this, I need to have a dead tooth extracted and an implant placed. After all the work I had done back in March, this tooth suddenly broke, and sensitivity testing reveals that it’s dead. A dead tooth can be a smoldering infection that can leach throughout the whole body. I just can’t catch a break! Still, I truly believe that all these little obstacles that keep popping up are part of the big major cleanup that I’ve been doing for the past five years.
Although the tooth extraction and tonsillectomy help a lot, this double whammy so close together really knocks my socks off. I am literally in bed for three weeks and don’t leave the house. A few years ago, I would’ve had a panic attack that I was missing three weeks of my life. Back then, I had no understanding of healing. Now I know that the body will tell you what it needs. I focus a lot on detoxing, salt baths, ionic foot baths, colonics, coffee enemas, and glutathione drips with my mobile nurse, Patrick. I start to use an injectable CBD oil in my stomach and directly into my ear to relieve the pain and inflammation in my jaw, throat, and the right side of my brain. Daisy treats me with a lot of homeopathics, and we start our own system of muscle testing my daily protocols. It seems that at this point, my body needs change, sometimes on a daily basis. I used to do this once every two weeks; now, I intuitively feel there are different needs for different things.
Daisy and I were probably scientists in our past lives, working in the same lab together—we never get tired of discussing medicine. We’ve talked about LDI (low-dose immunotherapy) with Dr. Klinghardt extensively over the past year because Anwar showed great improvement from this treatment. However, something occurs to me: Why should I continue to inject myself with other people’s bugs? Why not use my OWN bugs? If we’re trying to desensitize my immune system, then let’s be specific. This seems like a much more precise way to attack this chapter of my journey than being injected with the typical Lyme mix, which contains more than seventy strains of various pathogens.
We ask Dr. Klinghardt how to make LDI, and he sends us an e-mail with the step-by-step directions. I am excited by the possibility of this and decide to set up a lab in my treatment room at home. Daisy is in charge of ordering all the medical supplies while I’m obsessed with the idea of creating my own cure. It’s all I think about for the next couple of weeks as I carefully collect parts of me that carry the bugs I’m looking for. For example, I asked Dr. Sigari to save my tonsils after surgery because I know the PANDAS bacteria is in them. I also save my dead tooth and collect my stool, urine, blood, and saliva to make nosodes, which are homeopathic preparations created from bodily tissues. I wake up one morning realizing that I left a stone unturned by forgetting the uterus, which for every woman has a story of its own.
Daisy and I proudly look at the sterile cups with my concoctions as we patiently wait for my goods to incubate at room temperature for three to four days at a time. This project probably sounds totally disgusting to most people, but to me it is the most exciting thing I’ve done this year. It feels right with every cell in my body. Of course, I have no proof that this is going to work, but theoretically it should, and I am crazy inspired by the possibilities. Can you imagine if every person with Lyme could theoretically cure themselves? Daisy is my spirit twin when it comes to healing and discoveries. She is irreplaceable on my journey by now. Her tenacity, like mine, is relentless, only she has the perfect brain to execute our thoughts. It takes us about two weeks to make all the nosode preparations. Succussing each dilution fifty times is probably the hardest part. Daisy’s hand actually develops a repetitive stress injury from this vigorous tapping. We end up with different strengths of dilutions, which we call C1 to C12, for each of the following: tonsils, tooth, stool, vag, blood, urine, and saliva, a total of eighty-four sterile vials.
I perfectly color label them and place them in organized little boxes. We curiously experiment with our own muscle testing and discover that my personal homeopathic nosodes should work beautifully as ammunition in taking back my own personal defense force. Obviously, I completely lost my belief in pharmaceuticals to cure my Lyme and co-infections, but this latest plan of attack came to me clearly. I proudly display the boxes on the shelves in my treatment room so I can look at them until it’s time to carefully pack them up and bring them to Dr. Klinghardt to hopefully get his stamp of approval. What I love most about this man is that he encourages patients to learn to treat themselves. He is a team player and open to any theory and modality without ever pushing his own. Over the years, I have grown to feel like his student rather than his patient. I admire the fact that he is so willing to share all of his knowledge without attachment. He has a clear understanding that it takes a village to get patients like me back on track, and I’m so grateful to him and the rest of my medical team for getting me where I am today. My five-year journey has almost earned me a Ph.D. in Lyme—and psychology, for that matter—but nevertheless I need Dr. Klinghardt’s blessing on my new nosodes. I think he always knew I was ambitious, but when Daisy pulls out our LDI boxes that we carefully carried by hand from Los Angeles, he is clearly impressed. The most impressive of all is the fact that every single one of the nosodes tests strong for me and is clearly going to be a very important piece to my healing pie, according to Dr. Klinghardt. He injects them right under the skin in both my arms and puts some under my tongue. Within twelve hours, I have pretty strong reactions that last for a good week, but they’re not much
different from the usual rounds of LDI that I’ve done in the past. This time, I feel confident and precise as I am fighting my own bugs.
I leave Seattle inspired. Energetically, all the dots start to connect. My physical body is still healing, but my body and I are finely in tune at all times. I’ve learned to listen carefully without any judgment and surrender to however long it is going to take.
Over the years, I found happiness within the four walls of my home. Although I live in a cocoon, I have clarity and strive for greatness every day. My bed is my office, where I am holding the anchor for my children while recuperating from my ambitious protocols. I spend more time in my bedroom than in any other place in our new home. Anwar is finishing his school year and continues to focus on designing his first collection. I start to get excited by the thought of him going to a fashion school in New York. How amazing would it be for the four of us to live in the same city? Our apartment has been a great landing pad and a central place where his friends can come and go. It’s a full house when all three children are home, but that’s the way I love it.
By now I’ve been single for six months. I still have no interest in dating or going out to socialize with anyone but my Lyme squad. I’m focused on becoming whole before I can share myself with someone else. My journey inside the healing cocoon isn’t over yet, but I finally start to imagine my life outside its limitations, somewhere more motivating for my spirit, especially once Anwar goes off to college in the fall of 2017. There are exciting times to come if I can only get my ass out of bed already. It’s time. I pray for a miracle every day, promising the universe that I get the message.
June 24, 2016
Healing a chronic disease doesn’t become reality through a magic pill; it takes sweat, determination, and persistent hard work. @holtorfmed #LymeDiseaseAwareness.
#InvisibleDisability #WeMustFindACure #AffordableForAll
In early July, I start to spend a lot of time on this book with my cowriter, Michele Bender. We have established a nice little system of meeting and working together every morning while she is in town. My brain is better, but clear trains of thought are few and far between. At times it feels as if I’m trying to give birth to my story through a two-inch hole. Michele and I have pieced together a perfect timeline of my journey through my dated iPhone photos, calendars, lab results, Daisy’s notes, and the notebooks David and I kept through the years, so the road map is there. It’s been a useful training exercise for my brain. Being forced to get into the details of my story has been a difficult but healing experience.
My TVAM surgery is scheduled for July 12. During this procedure, a catheter is threaded up through the groin into the jugular vein and both sides of the carotid artery in order to stretch them. This is supposed to activate nerve fibers that are part of the autonomic nervous system and to increase blood flow to the brain. Testing shows this is still not adequate in my case. It also revitalizes the compromised nervous system and supposedly alleviates things like brain fog and other cognitive issues. I decide to postpone it for the second time. Out of desperation, I’ve had a do-or-die attitude throughout most of this journey, but the farther along I get in the process, the more careful and hesitant I have become about procedures that always come with a risk. TVAM is one of these, and I’m afraid of it. It’s interesting how much I value my life today compared with when I first got sick. I used to have balls of steel with no fear, but I have become highly aware of how fragile life is.
Instead, I focus on a ten-day master cleanse, which consists of organic lemons, cayenne pepper, and grade-B maple syrup but no solid food. Paige invites me to Aspen to be in nature so that I can focus on my book. Every morning and night I use the Bemer, a device Tom found that I hope will help open up my vascular system and keep my blood flow going as a way to prevent the TVAM surgery. Of the many health gadgets I’ve bought during these past five years, this is one I use religiously. It’s hard to understand why my body still can’t exercise, yet I know the importance of keeping the blood flow and lymph system going. Somehow swimming seems to be the only thing that does not set me back in my recovery, but I keep trying and looking forward to the day that I can run a 5K for Lyme disease.
July 16, 2016
Anyone can fake being sick, but it takes great talent to fake
being well and smile when you feel like shit.
Regardless of this little detour, at the beginning of August I find the courage for the last surgery on my to-do list and schedule it for August 23, but not without hesitation. TVAM seems like such an invasive and unnatural procedure to me, but every time I see Dr. Klinghardt I test for it, and he kindly reminds me that it’s still on the list. Even though he has never done me wrong, I have a hard time trusting this last piece of the puzzle. A couple of days before the surgery, I have a checkup with Dr. Klinghardt in Seattle.
“Why do I feel so resistant to this surgery when I’ve been so eager to work my way through the list?” I ask him.
“Let’s muscle-test and ask the question,” he says. I have not been able to differentiate between my intuition and my fear on this particular matter, so it’s interesting to see that fear is the emotion blocking me from doing what most patients refer to as the “liberation surgery.” So once again I pull up the bootstraps and tap into my die-hard desire for optimum health. I ask both Paige and Daisy to accompany me to the surgery in Newport Beach with Dr. Arata.
August 23, 2016
I am seeking, I am striving, and I am in it to win it with all of my heart.
#LymeDiseaseAwareness #TvamSurgery #LastChapter
#SearchingForACure #RemissionInSight
The procedure is actually a lot less eventful than I made it out to be in my head, but the aftermath and recovery bring a hard-core relapse of symptoms that puts me back in bed. The fatigue and joint pain is severe. Dr. Klinghardt warned me that sometimes the TVAM makes you worse for a couple of weeks or months, because all the bugs that live in the vascular system are forced to evacuate. This sounds right because I feel like a truck ran over me. It’s a really scary feeling once a relapse hits; you never know how long it will take to get yourself out of the hole again.
For the next six weeks, I really focus on my detox protocol of colonics, juicing, a strict gluten- and sugar-free diet, salt baths, and ionic footbaths with cilantro drops. The doctors have also instructed me to be on a blood thinner, so I inject myself twice a day with 1 cc of heparin for about six weeks. I’m supposed to feel liberated, but unfortunately my brain fog and eyesight are worse. I feel closed in, that scary feeling of being locked up in my own brain, a plateau that even my positive spirit can’t push through at this moment.
Chapter Eighteen
AND SO IT IS.
Even though it’s been a long five-year journey, talking to my bestie Ellie by FaceTime always puts things in perspective. There’s a lot to juggle to keep her life going in France, where she is living with her husband, David, and daughter, Gracie, who is about to start her final year of college at the American School in Paris. Six months earlier, Ellie’s marriage started to crumble, not because of a lack of love or commitment but because of the financial burden of caring for her in this late stage of ALS. In March, I started to promote a GoFundMe account and raised $77,404. It is heartwarming to see how kind and helpful friends, fans, and even strangers came together to make donations for Ellie’s care. Even though this bought her some joy and happiness for a couple of months, the reality is that her ALS is an unsustainable bottomless money pit for everyone involved. Emotionally and financially, this precious family of three is bankrupt, so we talk Ellie into coming home to Santa Barbara.
Doing so would be impossible if it wasn’t for our friend Jeff Palmer, who brings her home on his private plane. We rent her a small cottage, a place familiar to us right off Butterfly Beach. It’s next door to our favorite little church, All Saints-by-the-Sea, which is connected to the preschool Anwar used to go to. Ten years earlier, Ellie, Anwar, and I had a special routine of going t
o Starbucks every morning after dropping Gigi, Bella, and Gracie off at school. I could never have imagined that this is where we would end up. It’s crazy how much has happened to our happy and healthy lives. Was it the water we drank? The clove cigarettes? The horseflies? The ticks? Who knows? All I know is that Ellie rarely cries, so when she FaceTimes me at one 1 A.M. with tears in her eyes, I know she is calling for a reason.
“I need to see you now,” she says.
“I’m on my way,” I tell her. Without asking questions, I throw on some sweats and make my way up the 101 North.
When I arrive, it’s clear that a lot of shit has hit the fan. She pretty much tells me she is done and that these are going to be her final days. She wants everything to go on as usual. Gracie has to go back to school in Paris on the 26th, so that day the two of us sit on Ellie’s bed and write her last five wishes and final will. Their banter and crazy sense of humor is heartwarming and heartbreaking at the same time. The bond between this mother and daughter is exhausted from life circumstances, but unbreakable. We cry, we laugh, and we tell stories until about 9 P.M. that night. When it’s time for me to take Gracie to the airport for her flight back to Paris, it takes all I have to keep it together as I witness their final good-bye. Every time Gracie walks toward the door, Ellie begs for one more hug, as only she and I know that this will be their last one forever. How do you say good-bye to the person you love most in your life?
Our drive on the 101 to LAX is somber. Gracie’s trying to be brave and fight the tears that roll down her cheeks. We feel defeated by a disease that only has one sentence: death. We praise Ellie for her courageous fight and discuss the past five years and all the craziness that has occurred with Ellie’s family members and friends and all that has come into play in such a tragic situation. Ellie’s goal was to make it to Gracie’s graduation in May 2017, but we agree that it’s inhumane to ask her to fight one more day.
Believe Me Page 30