Bite Me, page 24
This has to stop.
It has to stop now.
It can begin to stop with those lucky enough to not have Lyme disease. They are the ones who can turn the tide simply by keeping their hearts and minds open to those who do have the disease. We need your help and support. We need you to fight for us.
We need you to believe us.
For all of us with Lyme disease, having hope and allowing in the positive energy of the universe gives us a fighting chance. I know I was in a unique position to be able to see many different doctors, and seek out some crazy treatments, but that was purely my experience. It doesn’t have to be yours. Many people do not become as sick as I did, nor do they have the resources to try almost every treatment under the sun. I realize this, and I hope no one has to go through as many relapses. I also hope that this story has offered some laughter, clarity, and awareness. If my book brought you a glimmer of hope then it has served its purpose. Above all, whether you’ve suffered from Lyme for twenty days or twenty years, I hope you find your silver lining as I did.
Thank you for reading, and may love be with you always.
appendix one
TWO DOCTOR’S OPINIONS
DR. HARRIET KOTSORIS
Chief Science Officer, Global Lyme Alliance
Chronic Lyme statistics should both surprise and shock you. There are probably 350,000 new cases of Lyme disease per year, and researchers, ones from esteemed institutions, have found that even when antibiotics are given in a timely fashion and in standard doses, 20 to 30 percent of those will fail conventional treatment and go on to develop a very disabling and chronic Lyme disease. By those metrics, there are up to 100,000 new people suffering from chronic Lyme disease each year. Add it all up over the last thirty years or so since the causative bacterium of the illness, Borrelia burgdorferi, was identified, and there are 3–4 million chronic Lyme sufferers alive today, people for whom we have no diagnostic markers or treatment options of major success.
How disabling can chronic Lyme get? Well, it’s a spectrum. In the best of a bad circumstance, there are some who have ups and downs and can be functional on some days and on some days can’t do a thing. In the worst, you have chronic Lyme sufferers who have the functional ability of a class 4 congestive heart failure patient or a person who can sit in a wheelchair and do practically nothing else.
Unfortunately, Lyme disease is a politically and scientifically charged problem. For many years, the Infectious Diseases Society of America, and a lot of physicians out there, felt Lyme was easy to diagnose and easy to cure. As time went on, science, and I think mainstream science, has shown that this is not the case. Even in the best of hands, diagnostic tests today are only reliable about half the time; as much as 50 percent of the results can be false negatives. Even those diagnosed can face daunting odds of full recovery.
Patients on the standard antibiotic treatment of doxycycline for four weeks, or even ones on an intravenous of ceftriaxone or Rocephin for three to four weeks, will fail treatment 20 to 30 percent of the time. Why? We’re still not completely sure. We do know that some of the failures are due to delay in the original diagnosis and treatment, but many scientists believe that it is a result of a post-treatment immunological component. In other words, some people develop an autoimmune type of response to the infection that cannot be reversed because, in the face of antibiotics, this devious bacterium goes dormant and hides. When the infection reactivates at a later date, it wreaks havoc on the body and its immune system so that patients can look as if they have lupus, rheumatoid arthritis, and the like. When the nervous system gets involved, patients can also look as if they have Parkinson’s, multiple sclerosis, and even Lou Gehrig’s disease. What triggers the reactivation? Stress, seasonal change, surgery, sleep deprivation, another illness, you name it. Lyme is not unique in this regard. There are a lot of bacteria that behave in the same way: tuberculosis, E. coli, syphilis. The list goes on. How to eradicate these persistent infections is one of the major problems in the infectious diseases world today. They’re tough. There isn’t an easy answer.
Many medical breakthroughs are often born out of controversy and division. Perhaps a cure for Lyme will come in the same manner. We can hope. We do know the stakes are high in that a cure for Lyme might actually have applicability to other diseases as well. If we crack this, we might be able not only to help the millions upon millions who suffer from the debilitation of chronic Lyme, but to solve a slew of other problems in the process.
Those of us working on the front lines of the Lyme epidemic are not a fringe element. We are not out there fighting for awareness just for the sake of fighting. This is a critically important problem, and it has scientific merit to it.
DR. ELLYN SHANDER M.D.
Throughout history great breakthroughs have come through awareness. Louis Pasteur saw microbes in a sea of bacterial ignorance. Scoffers of Isaac Newton finally saw the laws of gravity in flashes of brilliance. Courageous explorers sailed off in the face of “the world is flat” doubters and opened closed minds of Europe by sailing back with riches and wisdom. Now it is our time for science to wake up. We have the opportunity to fight and eradicate a scourge on our planet. We can save hundreds of thousands of people suffering lives crippled by pain and loss. But healing only happens with awareness. The controversy over Lyme disease, with some even questioning its existence, is staggering. It is time that we emerge from the darkness of ambiguity and step firmly into identifying Lyme, and its co-infections, with predictable blood tests and no false negatives. It is time that we step into early detection and aggressive treatments. It is time to fully understand the vector of Lyme and how it hitchhikes on ticks. It is time for doctors and health-care professionals to educate themselves about acute Lyme disease, chronic Lyme disease, and the necessity for long-term treatments. It is time to mount a war against Lyme disease and make it a disease of the past.
Lyme disease has been called the “great imitator” in the psychiatric and medical literature. When it is manifested in a person, its chameleon presentation looks like many other diseases.
I became an “expert” on Lyme, out of necessity. For more than twenty-five years, patients have come to my office with some combination of symptoms of anxiety, mood changes, memory problems, personality changes, paranoia, nightmares, anxiety with air hunger, thought disorders, hallucinations, joint pain, muscle aches, headaches, vision problems, unsteady walking problems, flulike symptoms, and nerve pain. Energetic bright people are brought to their knees with an inability to think and function. They are besieged by rages and unexplained emotional surges. Teens change from being good students to being depressed and irritable, often with severe personality changes. People with Lyme often have had pets that went outside, or have walked in the woods, or simply lay on the grass on a sunny day. When asked if they had been tested for Lyme, most have said, “I don’t have Lyme, my doctor sent a blood test…” Unfortunately the regular labs do not find Lyme with their present tests. Also unfortunately, despite an epidemic in our country, doctors are not thinking Lyme and pursuing this diagnosis. So these patients have worsening Lyme symptoms, and are often disabled by the time I see them, with no accurate diagnosis of a Lyme infection that was treated. I cannot stress loud enough that Lyme can be diagnosed clinically, the old-fashioned way. Yes, it is better to have a blood test from the more definitive labs, but if it looks like Lyme, smells like Lyme, and acts like Lyme, the early initiation of antibiotic therapy is crucial. Chronic Lyme takes a huge toll on the immune and neurological systems. One of my biggest joys is to make an accurate diagnosis and shepherd that person to specialized Lyme treatment. I have seen hundreds of patients who, like Ally, have endured a life of pain, confusion, and psychiatric symptoms. A life being robbed of its life force. We have an obligation to diagnose and recognize Lyme, leading to treatment and recovery.
It has been my privilege to diagnose, assist, support, and witness Ally’s transformation on her journey to heal Lyme disease.
Ally’s honest and openhearted writing of the impact of Lyme on her life is both horrifying and uplifting. Her fight back to health is awe inspiring.
The power of Ally’s story is that it has so many levels of healing. Her poignant description of growing up with Lyme is heartbreaking. Undetection and no treatment left her an undefended and vulnerable eight-year-old unable to read or focus. Unlike healthy children who wake up with energy, she woke up exhausted, with little motivation, painful joints, and constant confusion in school. She was a child faced with a world she couldn’t figure out, and no language to express the inner world of torture. Her years in schools, with diagnoses of learning difficulties and ADD, are common tangents for professionals who can’t see Lyme disease. As her physical health deteriorated, we see her terrifying descent into hell. She gradually became unhinged with the addition of pot and alcohol, self-medicating her brain and body, inhabited by the enemy.
As we read her story, the next level becomes apparent. Her emotional journey is a personal story of transitioning from a young girl, privileged and immature, to a woman of self-discovery and maturity. Her gradual awakening to her own abilities, her own opinions, and her own choices was a joy to help shepherd. We see her begin to trust her own inner system, make her mistakes, but consistently walk toward health and self-care, navigating schedules of endless herbs, homeopathy, and antibiotics. Her sobriety, healthy diets, and avoidance of stress came from an inner commitment that this disease would not defeat her. Her warrioress emerged, determined to “climb mountains, forge rivers, and walk through rings of fire.”
Thus begins her next level of healing, her spiritual journey, from victim to self-healer. It is difficult to do justice to the extraordinary privilege it has been working, guiding, and loving her on this journey. Her courage on her path of transformation has been extraordinary. Like a plant that turns its leaves to the light despite the obstacles, she has continually heartened me with her determination to find and nourish her inner light. We met sharing Ganesha, the elephant god, who overcomes all obstacles. And over the last ten years Ally has never wavered in looking for more spiritual connections. Healing happens with a connection to spirit, however one defines it. And she has a connection that is powerful and nourishing.
The great masters have said that facing adversity leads to our greatest growth, and that grief and suffering is the ultimate refining of the soul. Nobody chooses Lyme disease. Nobody chooses chronic suffering as they get better. But Lyme disease presents a rare opportunity to find our inner strength, our inner warrior, and our connection to spirit with a deep reverence for life and happiness. Fighting for health and stability, day after day, despite pain and confusion, illuminates our greatest warriors.
Ally stepped up to this challenge and to her next level of healing. Transformation happens with initiation, and then discovering one’s own sovereignty through the journey. During our work together, I called her Princess Alexandria. I said we would work on her becoming a queen. We worked on her becoming aligned with her greatest goals and becoming an independent person committed to helping others for the greater good.
I watched Ally bloom over the years into the fighter that she is today. She evolved spiritually, recognized her own inner power, and overcame brain fog when it threatened to demolish her meditations and daily functioning. Ally followed and manifested her dreams. She is a joy to spend time with. Her appreciation of her life is grounded in almost losing her life to one of this planet’s worst plagues. It is difficult to have a happy ending to an unhappy journey, but she punctuated her journey with happiness, hope, and laughter. Despite her suffering, she had faith during the darkness. She had courage in times of fear. And best of all, she had confidence that there was a rainbow at the end of her journey. Now when I spend time with Ally, her partner, Steve, and their little girl, Harley, I am filled again with the wonder of our human potential. Whatever the adversity we face as humans, we can overcome it.
Ally, it gives me great pleasure to call you Queen Alexandria. With great determination and courage you have arrived. Congratulations on your recovery, your persistence, and your transformation. You are a true pioneer.
May all your days be blessed with happy moments, good health, and love.
appendix two
FOCUS WHEELS AND WRITTEN INTENTIONS
Focus wheels and written intentions are among the most powerful spiritual tools I’ve come across—promise. This is an important secret to overcoming Lyme disease. It doesn’t cost any money, doesn’t involve doctors’ offices, or needles, or pills, or anything like that. All it takes is a little bit of time, a little bit of faith, and a pad and pencil.
The focus wheel I use is based on the Abraham-Hicks law of attraction process.
Get a notebook and get those pencils sharpened. Come on! Get up and get them. Well, at least pay close attention. There are two different formulas. I’ll start with the focus wheel first.
On the top of the page, write today’s date. Next, write: “I AM SO GRATEFUL FOR EVERYONE AND EVERYTHING IN MY LIFE!!!”
Then, “I am so grateful to [the universe, God, higher power, the ocean, energy, a doorknob—whatever floats your boat].”
Then write: “Today is the best day in my life so far and it is so” (or if you want to focus on the whole year, or the upcoming week or month, then you write the previous statement accordingly).
Are you following me so far?
Here is when it gets wacky: Draw a circle in the middle of the page. Not a huge one, but like the size of the bottom of a water bottle. Inside the circle, write the following: and just ignore the language if it bothers you; just suck it up and write it. You can get over it if it bothers you.
“I LOVE EVERYONE AND EVERYONE LOVES ME. I BLESS EVERYONE AND EVERYONE BLESSES ME. I FORGIVE EVERYONE AND EVERYONE FORGIVES ME.”
Got it? Not too hard, right? Okay, next, draw lines coming off the circle. Twelve lines. I like to call them sunbursts. In between each sunburst there will be room to write.
The reason why this thing is called a “focus wheel” is that you are going to choose a topic to focus on. It can be anything from health and recovery from Lyme disease, to body image and self-esteem, to buying and moving into a new home, to finding a partner to complete your life. Or a job you want! This stuff works, I am telling you honestly from the bottom of my heart.
I did plenty of focus wheels on my health and Lyme, but I’ll use a more tangible example. Say you’re moving into a new place; in each “sunburst” you might write the following:
I love it when… [e.g., my home is always safe and easy to deal with]
I love that… [e.g., moving into our new house was easy, went smoothly, affordable, and fun, with helpful, honest, kind, strong, organized people to help me do it]
I love it when… [e.g., my monthly expenses for my new home are lower than I expected and that I can always afford everything for my home]
I love that… [e.g., my home is always safe and protected and clean]
I love it when… [e.g., people always feel very comfortable and welcome and happy in our new home).
I love that… [e.g., my children are always safe, happy, healthy and protected in our new home, and that they thoroughly enjoy every aspect of our safe wonderful home. It is a perfect environment for them to grow up in).
I think you are starting to understand. Now, these statements are in present tense (even if you have not found that new home yet, or not acquired that job or found that perfect man). You have to pretend a little, and ALWAYS STAY IN THE POSITIVE. Language like “I love it when my boyfriend doesn’t cheat on me” or “I love that our house isn’t going to get robbed and burn down” is considered negative language. You have to figure out how to turn those things into positives. Like “I love that my boyfriend is a faithful respectful man who loves me unconditionally.” Or “I love it when our home is always safe and protected by everything and everyone.” Get it? Got it? GOOD!!
The next exercise is one that is really fun because you can just go on and on and put in as many details as humanly possible, which for these, is important to do. The more details, the more specific you can be, the better.
This next written formula is called “Written Intentions.”
Get that notebook back out and go to a fresh page.
At the top of the page, write the date.
Next, you will write five (or more if you’re feeling happy) things you are grateful for.
Example:
I am SO GRATEFUL for:
1. My family
2. My health
3. My home
4. Having love surrounding me always
5. My dog
6. My close and supportive friends
Now is the fun part. You have five intentions to create for your life. Anything your heart desires—reach for the stars! Sometimes this seems silly, or ridiculous, especially if you are feeling blue, but if you force your pen to the page and get out of yourself a bit, your whole mood will transform before your very eyes. It’s very likely that you will become healthier and more vibrant on even a molecular level as well. It has been proven.
After you write what you are grateful for:
