I haven’t blogged in almost a year. Wow. Time flies when you aren’t suffering in the confines of your bed, in solitude for up to 23 hours a day. I’m not out of the woods yet (pun intended), but I am able to work some, interact with other humans on a regular basis, and am using every ounce of energy I have to really, truly live. I am on the brink of exhaustion most days, and collapse into my bed between meetings or whenever I have the chance. I am sleeping again though, and will happily take every second of sleep I can get:)
It’s been a quite a balancing act, and the more of my life I get back, the more eager I am to keep pushing. If I push too hard, however, I know it could all come crashing down- as it has before. The thought of going back to that dark, isolated, torturous state of existence scares me beyond anything I have ever known.
I write this for you today, not because I have the time or energy to do so, but because someone needs to speak out and take a stand. September is National Suicide Awareness and Prevention month, and suicide is something that hits far too close to home for many of us. Within the Lyme community, suicide is the most common ‘documented’ cause of death. I say ‘documented’ in quotes because I know many people who resorted to suicide did not actually want to die- they simply saw no other way out of a very bleak situation, and the relentless suffering was more than they were able to tolerate any longer. The Lyme Disease bacteria and co-infections spread throughout their bodies and minds, and the state they were forced to remain in was not acceptable. It wasn’t a choice. I want you to know that they fought as hard and as long as they could. The medical system failed them; Lyme Disease is what killed them. I also say ‘documented’ cause of death, because I believe there are millions of people who die from Lyme Disease (whether it has been diagnosed or not), but that is not what is written on the death certificate. Instead, it is indicated that they suffered cardiac arrest, or organ failure, or some other type of fatal injury with no identifiable cause.
Due to the fact that the IDSA (Infectious Disease Society of America) and the CDC (Center for Disease Control) use faulty testing and refuse to acknowledge Late-Stage/Chronic Lyme Disease in patients, in order to have a chance at survival, most of us have had to drain our bank accounts- paying cash to LLMDs (Lyme Literate Medical Doctors) who would only treat us off the record in secret clinics. How do you put a price on your life? When it comes down to it, you will spare no expense if there is a chance for some sort of relief from your pain…even if it is just a chance. Once you become too ill to work and have no money coming in, where do you turn?
This disease does more than destroy our bodies and minds; it also tears our families and relationships apart. I speak for myself in saying this, but am sure many others have the same sentiment- I am overcome with guilt for the burden my illness has put on my family and loved ones. I am lucky enough to have an incredible family who has supported and stood by me, despite some heated arguments and disagreements about the path I chose to take in treating my illness. I am even more lucky to have loved ones that weren’t family, but if there was ever any doubt, I now consider them to be. They have shown their loyalty and remained true friends when it would have been so much easier to walk away.
No one understands the suffering and loss a Lyme patient endures unless they have lived it themselves. I could never expect that of anyone. If you are reading this right now, all I ask is that you try to be understanding and supportive of anyone (whether they are a Lyme patient or not) who may be going through a tough time. We all have our battles and struggles in life. Even if you don’t understand what someone is going through, if nothing else, at least be kind.
Money, fame, power…it doesn’t matter who you are- Lyme has no borders and no one is immune. To illustrate this, I have included a list of many well known people who have contracted Lyme Disease:
George W. Bush (43rd President of the United States) It was kept secret, and still, a lot of the public is not aware that President George W. Bush was suffering from Late-Stage Neurological Lyme Disease during his presidency. Sources report that of his 11 doctors on staff at the White House, not one of them was able to diagnose or treat him properly. He was later seen shaking hands with a well known LLMD (Lyme Literate Medical Doctor) at a high-profile Presidential event.
If Lyme was so easy to diagnose and treat, why would he know or be seen communicating with an LLMD, and why was his illness kept hidden from the public? I always wondered how the President of the United States effectively could run a country when he seemed very confused a lot of the time. Regardless of your political affiliation, I’m sure those ‘Bushisms’ had you giggling from time to time. Looking back, it all makes sense. I truly feel bad for anyone- especially someone under so much constant stress and scrutiny, to have to attempt to function at such a high level and run one of the most powerful countries of in the world while secretly battling this horrific disease.
Unfortunately, Bush’s condition was far more serious than anyone let on. Prior to being infected with Lyme Disease (which often severely impacts cognitive functioning, as well as physical health), he was extremely charismatic and well spoken. Here’s a youtube video to show how the progression of the disease changed him:
Alec Baldwin (Actor) Baldwin hasn’t been overly outspoken about the fact that he has Chronic Lyme Disease, but has stated that his symptoms return each year.
Ashley Olsen (Actress and Fashion Designer, of the Olsen Twins) Although Ashley has yet to publicly make a statement confirming she has been battling Late-Stage Lyme Disease since 2012, she abruptly left the spotlight and provided little explanation as to why. Sources close to the actress have said she is very ill, and has been deteriorating quickly.
Michael J. Fox (Actor) Michael was reportedly diagnosed with Lyme Disease approximately 3 years prior to developing Parkinson’s Disease. Some scientists and doctors believe there is a correlation between Lyme and the progression of the disease leading to Parkinson’s.
Avril Lavigne (Singer) “I felt like I couldn’t breathe, I couldn’t talk and I couldn’t move. I thought I was dying… I was in Los Angeles, and it was literally the worst time of my life. I was seeing every specialist, and literally like the top doctors … It was so stupid. They would pull up their computer and be like, ‘Chronic fatigue syndrome’ or ‘Why don’t you try to get out of bed, Avril, and just go play the piano?’ or ‘Are you depressed?… This is what they do to a lot of people that have Lyme disease. They don’t have an answer for them, so they tell them … ‘You’re crazy.”
Daryl Hall (Musician, Hall and Oates) “It can make you wanna die if you’re not dead,” …the lack of widespread recognition of the severity of Chronic Lyme (as opposed to just acute Lyme) is “almost a bad joke” to anyone who actually suffers from it (Chronic/Late-Stage Lyme Disease).
Yolanda Foster (Reality TV Star – Real Housewives of Beverly Hills) Finally diagnosed in 2012, Yolanda has sought treatments all over the world in search of a cure, or at least some relief. After a terrible relapse earlier this year, Yolanda said, “I have lost the ability to read, write. or even watch T.V., because I can’t process information or any stimulation for that matter. It feels like someone came in and confiscated my brain and tied my hands behind my back to just watch and see life go by without me participating in it.”
Ben Stiller (Actor/Comedian) In 1999, Ben initially told GQ Magazine that he suffered from bipolar disorder (a very common misdiagnosis for Lyme patients). He later corrected that statement, and said he actually suffers from Lyme Disease. “I got it in Nantucket, Mass., a couple of years ago,” he says. “My knee became inflamed and they couldn’t figure out what it was, then they found out it was Lyme. I’m symptom-free now, but Lyme doesn’t ever leave your system. It’s a really tough thing.”
Jamie-Lynn Sigler (Actress) “It was such a life-altering experience,” she said. “I realized it could all be taken away in a moment.”
Amy Tan (Award winning Novelist) “I could not read a paragraph and recall what it said,” she once wrote. “I wrote in circles, unable to tie two thoughts together, never mind the plot of a novel. Ten years have passed since I was diagnosed, yet little has changed in the way medical schools, HMOs, private practitioners and insurance companies view the disease. It is still frequently misdiagnosed and patients with chronic suffering remain overlooked… We need to revise the [medical industry’s] guidelines based on new research and the plight of those who have suffered from the disease, some of whom have lost their jobs, their homes, their marriages and even their lives.”
Debbie Gibson (Singer) “My back kept going out, I couldn’t lift my head sometimes. My boyfriend said I was mixing up words in my texts. It really got into my cognitive skills. I took crazy amounts of antibiotics, including doxycycline. It killed so much stuff in my body that I became a shell of myself.”
Richard Gere (Actor) “This is one scary disease,” he said. “I felt as though every ounce of strength had gone from my body. Within hours I could barely lift my head from the pillow.”
Angeli Vanlaanen (Olympic Skiier) “My name is Angeli VanLaanen and I have been living with Lyme Disease for over fifteen years now. Fourteen of those years I went undiagnosed. Since the age of 10, doctors have struggled to explain my wide range of health problems. I’ve been misdiagnosed numerous times and even told it was in my head. Due to my strong immune system and active lifestyle, I was able to keep many severe symptoms at bay for years. But as my rigorous lifestyle as a professional skier took a toll on my body, my Lyme symptoms worsened.
I suspect I first contracted the Lyme infection living in Green Bay, WI when I was 10 years old. I recall a few tick bites that year, but remember not thinking much of it. My symptoms started out as fainting spells and a sinus infection that lasted the entire year. I then developed migraine headaches and a hormone imbalance. Even after returning to Washington the following fall, my symptoms multiplied rapidly. From back, neck and joint pain, to muscle fatigue and spasms, to developing dyslexia and blurry vision, to lock jaw and digestion problems, my symptom list stumped doctors all over the state.”
The path to remission is anything but linear, especially when dealing with Chronic Lyme Disease and multiple co-infections. Experts are now calling it Multiple Systemic Infectious Disease Syndrome (or MSIDS). Some doctors have told me that effectively treating this beast is like peeling back the layers of an onion- once you clear one infection, another latent one surfaces, and once again, you find yourself brought to your knees by the stealth pathogens overtaking your body.
It’s difficult to explain what it feels like to be so close to having your life back (more or less), and then watch it slip away again and again. To continue to get up each morning (if you even have the energy or strength to do so), drag yourself out of bed, try to remember to take all of your meds and supplements at the right time- some with food, others without food, spaced out from the ones that will interact, or even to remember if you’ve taken them at all… And then hope and pray not to puke them up or be nauseated all day to the point that you can barely keep it together. Or maybe you have a herxheimer reaction from the treatments, which causes all of your symptoms to be aggravated 10x worse than you ever could have imagined.
Then there are the never-ending doctor appointments, the lab tests, the infusions, the new symptoms replacing old ones, the piles of medical bills that keep growing…it seems like the cards are infinitely stacked against you, and is so frustrating beyond anything I can convey in words. To keep your eyes on the prize- which is the light at the end of the end of the tunnel (a.k.a. YOUR LIFE)- clinging to the hope that someday you will be able to lead a normal life again, seems almost impossible at times. There’s an old Japanese proverb that says ‘Fall down seven times, stand up eight”…and with this disease (whatever you’d like to call it), that saying could not possibly be more true or more fitting.
To not allow this disease to win, to not give it permission to break your spirit or destroy your hope is something I can’t expect anyone to understand who hasn’t personally lived through it. One of the most difficult things for me has been the feeling of letting down the people I love. I know the only thing they want is for me to be me again- healthy and happy and full of energy, adventure, and living the life I worked so hard to someday have. I also know it’s difficult for them to understand the relapses (neither do I), the good days and bad days, or how insanely challenging it is to continually play this guessing game with how to tackle whatever is happening in my body.
The complexities of Lyme and Co. are more than I’ve been able to educate myself on, studying day and night for 3 years. There are so many pieces to the puzzle. What treatment protocol works for weeks, or months, or even years starts losing its effectiveness because the Lyme is so intelligent, it begins to recognize any attempts to attack it (either with treatment or via strengthening the immune system), and eventually it figures out a way to outsmart whatever has been working. It has the ability to morph into 3 different forms, and can create a biofilm to protect itself until it is no longer under attack. Then, it unleashes its fury the first moment it has a chance.
This spring, I reached a plateau which then led to a relapse, and I was absolutely beside myself. The hardest part is that there is no answer- no help- no cure. That’s right, there is NO CURE. And almost anything that might have a shot at helping alleviate some of your symptoms or even heal you is not covered by insurance.
Western medical doctors (for the most part) deny the existence of your disease. There is nothing more infuriating or humiliating than doctors and loved ones discounting how truly ill you are, and how much you continue to suffer. In the defense of some of them, I have asked friends of mine who are doctors or are in the medical profession what they know about Lyme Disease. It is awful how little they have been educated about the FASTEST GROWING INFECTIOUS DISEASE IN THE WORLD. Truthbomb. The media blows up Ebola, or West Nile Virus, but the fact of the matter is that Lyme Disease puts all those diseases to shame (speaking in terms of sheer numbers). It is now estimated that 1-2 million people contract Lyme Disease in the US each year…most go undiagnosed, or maybe diagnosed eventually with some sort of autoimmune or psychological condition, or numerous other conditions that have no identifiable cause.
In my case, I have all the proof in the world, and shown giant stacks of lab results indicating chronic infections, 2 positive Western Blots…one through IGENEX (a private lab) and yep, after 3 years of begging and pleading and fighting, I FINALLY got a Western Blot processed through one of the best hospitals in the world! You know what? It came back positive. They then had the audacity to tell me it was a false positive and subsequently refused to see me. I’ve spoken with numerous doctors who have attested to the fact that it’s extremely improbable one could get a false positive on a Western Blot. False negatives are quite common. False positives, on the other hand, would basically be indicating there were antibodies present that weren’t actually there.
Can you imagine if a cancer patient was treated this way?
So even if you finally have a positive diagnostic test, or a clinical diagnosis, or maybe just a hunch- due to all of the controversy, the inaccurate diagnostic testing, and political polarization that surrounds Lyme Disease, you are basically thrown to the wolves and left to fend for yourself. You are thrust into an incredibly painful and ever confusing world where there is nowhere to turn- no insurance coverage, no funding, no standard treatment protocol, and no one you can really trust to help you.
Every doctor has destroyed your faith in the medical system as you once perceived it to be- an entity that is committed to saving lives and curing illnesses- no matter what. I personally have had the displeasure of being ridiculed by dozens of doctors with egos too big to fit into a football stadium. I’d really like to send a copy of the Hippocratic Oath to refresh their memories of all that they swore to uphold.
No one working within the system wants to take on a Lyme patient and treat them the way they need to be treated- unless it is still in the acute stage. If you have Late-Stage Lyme, you are seen as a liability and could cost these doctors their medical licenses and their livelihoods.
I still cannot wrap my mind around the way victims of this disease have been ostracized and left to suffer and die. Many of them are children who are robbed of their childhoods and suffer immensely- often not believed by doctors, teachers, and even parents and friends. Many aren’t even able to communicate their terrifying symptoms in words. I barely can, and I’m a well educated adult.
I write this today because I am still here. I am able to enjoy life again, most of the time. I’m not there just yet, but I know I’m very close to remission. I want to be a source of hope to anyone out there who may be struggling with Lyme or anything else: there is hope…there is always hope. I am living proof of it. Do not give up. Keep searching for help or answers. Perhaps what has helped me could help you, too. Perhaps I was given this life because I’m going to keep fighting- not just for my health, but for justice, and for all those people out there who feel alone and hopeless. I made it through the storm, and you can, too.