Misdiagnosed: Present Reality
The Fourth chapter: The true story of my life and battle with Lyme disease, doctors, surgery, and the American healthcare system.
My present reality is I have now tested positive for Lyme disease, I still have a Bartonella rash or scar, multiple co-infections, in addition to heavy metal poisoning from mercury and aluminum. I was refused appropriate testing and treatment from my health insurance company so there was no point in continuing to pay over $300 per month for insurance I couldn’t actually use. Meanwhile, my girlfriend is also now sick with my exact same symptom profile, and is still covered in rashes.
At 32-years-old, I should be starting a family and taking my career to the next level; instead, I am currently working four jobs just to survive. I am extremely privileged to work the positions I am in, but that doesn’t change the fact I don’t have health insurance and even if I did they wouldn’t treat me. This is an extremely odd paradox to be in, because I make more than the average American, and live in one of the most expensive cities in the world. If I wasn’t sick, I wouldn’t be in this position, but the fact of the matter is almost every dollar I make goes directly to basic necessities and keeping us both alive and as functional as possible.
Despite making serious progress since getting a proper diagnosis and going on medications and experimental treatments, I am still dealing with inflammation attacks that lock up my lymph nodes and the muscles in my shoulders, neck, and jaw anytime I take anything that kills Lyme disease or Bartonella. Meanwhile, my neck pops and cracks like Rice Krispies on Sunday mornings, despite the best attempts of my chiropractor. The brain fog also comes and goes depending on a range of factors.
This disease has had an insane impact on my entire life from an unnecessary nerve damage surgery, to nearly two decades of unnecessary drugs that didn’t treat the cause of my affliction, to psychiatrists trying to convince me I was crazy. Not to mention all the damage the disease itself has caused from decades of inflammation, digestive issues, profuse sweating, rashes, and damage to my joints and organs including my nervous system and brain.
Despite this being my present reality, I am not giving up. I will do whatever it takes to find a cure for myself and girlfriend and heal from this as much as possible. This disease will not be the final chapter of my life, and I am going to fight it with everything I have.
This is why I am launching a Patreon account, and I am also reluctantly now accepting contributions (both fiat and crypto). Through Patreon, you can help fund my ongoing content creation efforts or even sign up for video chats with me, or hire me as a consultant so I can both continue to create value for others and cover our medical expenses. I would love to spend more time dedicated to writing and video creation. Meanwhile, continue to pursue my passions in the tech industry and being an advocate for human rights, privacy, and digital rights.
With all of that said, I ask that if you are not well yourself, or do not have a lot of money, please do not feel obligated to contribute anything to me. Instead, share these articles on social media, shout them from a mountain top, and tell people the truth about Lyme disease and the Western medical system, and everything you’ve learned from reading this. That is far more important to me than money, and if you know something I don’t or can introduce me to someone who can help my girlfriend and I, please contact me (trent at mysticlabs dot com). I consider the truth and information to be just as valuable as any number on a computer screen.
In 2018, it should not be controversial that antibiotic-resistant infections now exist and can cause prolonged chronic health problems. We’ve been warned for decades by the mainstream media about how there would be “super bugs” or incurable infections in the future, and that future is now. Lyme disease is that super bug, it is real, it sucks, and it can become chronic if not diagnosed and treated in time.
Abandoned and Left For Dead by The Healthcare System
The healthcare system has abandoned me, does not recognize my illness, and the government is so corrupt, the CDC doesn’t even know how many people actually have Lyme disease. Let alone do anything to warn the public about the possibility that Lyme might be contagious beyond just tick bites.
After years of abuse at the hands of traditional Western doctors, I finally have open-minded, multi-practice doctors and answers. Unfortunately, so much damage has been done to my mind, body, and finances after the past 28 years of misdiagnosis, I need help to find a cure for myself and girlfriend so we can move on with our lives as much as humanly possible.
Once my insurance provider and traditional Western doctors made it clear they weren’t going to treat me, I decided to take matters into my own hands. I stopped giving these medical criminals any more money, cashed out my remaining investments, including most of my cryptocurrency, and spent the money on testing, medications, and treatments. That was well over 6 months ago at this point, and I am slowly getting better, but my savings are now gone due to this disease. This is why I’m exploring Patreon so I can continue to get the treatments I need.
It is costing me several hundred dollars per week just for treatments, medications, and herbs. I spent everything I had on hiring new Lyme-literate doctors, medications, a good chiropractor, and began other experimental treatments. The good news is all the treatments I am currently exploring are working slowly, but surely. I don’t know yet if they are going to be enough to make a full recovery, but I am at least no longer on the verge of sepsis like I was earlier in 2018.
There were moments in early 2018 where my body was riddled with so many co-infections from influenza, a prostate infection, bladder infection, Candida, Bartonella, Babesia, and of course the bacterium Borrelia burgdorferi, that I didn’t know if I was going to make it. I suspect I might be dealing with some underlying jaw issues as well. Luckily, some of these infections are under control now.
Arguably, I would be better off with cancer or HIV because at least then I would be able to get the medical attention I require. Doctors wouldn’t think I’m crazy, and insurance would cover it; society and other people might actually treat me like a human being. Instead, I find myself yet again on the fringe of what is accepted. Of course I have a disease that Western medicine doesn’t believe is real.
Yet, when you look at the actual science, Lyme disease is merely a spirochete infection that has become antibiotic-resistant and good at evading the immune system. It isn’t that complicated once you understand the reality of what is actually happening. Once the immune system is weakened, the co-infections just keep adding up as the immune system is unable to fight them. Lyme disease is the “super bug” we’ve been warned about for decades, and now that it is finally here, the medical system is pretending it doesn’t exist. Huh?
The fact that in 28 years and going through easily two dozen doctors who never thought to check me for Lyme disease (despite a giant Bartonella rash on my back), instead performed surgery on me, drugged me, and tried to convince me I was crazy, is a travesty that has caused me needless pain and suffering. I can’t even begin to imagine what others have been through and are currently going through. I’ve been lucky enough to actually have the intellect and financial-capacity in the first place to finally get a proper diagnosis and start getting effective treatments.
Despite millions of chronic Lyme cases and dozens of medical research studies proving it exists, chronic Lyme is still taboo in Western medicine. I suspect the number of actual Lyme disease cases is much higher than the government is letting on as many autoimmune conditions and mental health conditions are often misdiagnosed Lyme disease. From what I’ve researched, anyone who has been diagnosed with fibromyalgia, Multiple Sclerosis, any Not Otherwise Specified mental disorder, IBS, SIBO, Candida, or even an autoimmune condition, should consider getting tested for Lyme disease.
There is a possibility Lyme disease can be sexually-transmitted, it is likely in the blood supply of all major hospitals, and might be spreading from bugs other than ticks. It is very likely that the Lyme epidemic is much worse than the CDC even realizes and some doctors suspect up to 20% of people in the US are infected.
I Will Not Give Up
Despite my limitations, I have always found a way to help others and create value for people. Now I finally have my answer for why I am sick and it has nearly cost me everything. I have no clue what the future holds, which is why I am publishing this now in an attempt to raise awareness, crowdsource information, and support. I am not giving up, and will do whatever is required to survive this and raise awareness.
I don’t really see myself as a victim, or even someone who can’t take care of themselves. If anything, I see what has happened to me as a result of a complete and total catastrophic failure of the US medical system. I am publishing this to bring to light to the corruption and failure of our education system for US doctors who are not educated on Lyme disease. As well as an unforgiving healthcare system propped up by politicians who have no business dictating health decisions or diagnostic criteria that blocked me and possibly millions of others from getting proper medical care.
We live in a world where a single bug bite can change the entire course of your life and I’m evidence of this.
Even though it feels personal, it isn’t my doctors fault that I got Lyme disease. It also isn’t their fault that they were not properly informed. Unfortunately, even our doctors are subject to “fake news,” misinformation, propaganda, and omission from important information from our government and the pharmaceutical industry just as much as the average public citizen, if not more so.
While I am obviously not happy about the psychiatrists who attempted to brainwash and poison me, or the doctor who performed surgery on me as a teenager, they legitimately thought they were helping me because they didn’t understand the reality of a spirochete infection and what it is capable of. They themselves were dangerously brainwashed and uneducated by a system that doesn’t care about science or anyone’s actual health.
If there is anything that has woken me up to the true reality of the world we live in today, Lyme disease is at the top of the list of things I’ve personally experienced which categorically proves the corruption and failure of modern society at a systemic level. From the psychopathic scientists who possibly weaponized these spirochetes while playing God, to the brainwashed doctors, for the profit motives of the pharmaceutical industry, and clueless and complicit politicians who allowed all this to happen.
Despite everything I’ve been through, I’ve still accomplished a lot and have been incredibly successful. I have never given up, still work, and somehow still barely make enough money to live in San Francisco. Lyme disease and my co-infections didn’t stop me from covering Steve Jobs keynotes with a hacked cellphone as a teenage journalist, nor did it stop me from testing out of high school to go to college early, then drop out of college to join a startup with two of the former founders of Myspace, and then work for Playboy. Nor did I let it stop me from helping my Mom search for her murdered friend, work at a medical research company, or bootstrap my own startup to $1 million in revenue, then sell it for an exit. I also did not let my Lyme disease stop me from writing articles that have made the front page of Medium, which is very possibly how you came to follow me.
Although Lyme disease did make these things much more difficult, I have found ways to hack my body and mind to accomplish the impossible. I am currently holding down four different jobs, from working in the cloud computing industry at an automation startup, consulting and advising startups, helping my Dad with his nonprofit to help reduce recidivism in California prisons, and I just became the host of the Hacker Noon Podcast.
With my health the way it is, I am limited in some of the opportunities I can explore and I am eternally grateful for working with amazing people who allow me to work on my own terms. I am actively working on several opportunities to diversify my earning potential so I can continue to seek new treatments and I do not intend to stop working any time soon (although honestly I probably should take some time off — that I can’t really afford). With all this said, I’m not going to pretend that this disease hasn’t put me in serious financial risk due to the cost of treatments and medications without health insurance.
It is to the point where I am ordering and taking medications from other countries as I can no longer afford to buy the medication I need in the United States. It was cheaper to buy a year’s worth supply from overseas, have it shipped to my house in San Francisco, and get it tested to make sure it was real, than a single month’s prescription would have cost in the USA. This is the America we live in today, and this is the reality I’m currently experiencing.
How or why my girlfriend of the past five years has stuck with me despite everything we’ve been through, I don’t really know. All I know is I love her with all of my heart, and she is the only person who has ever believed me and supported me in healing, and actually helps to keep me healthy. I honestly don’t know if I would still be here if it wasn’t for her. Yet, now she is suffering from the very symptoms she was trying to help me overcome. I’m heartbroken knowing that I potentially gave her this horrible disease, but at the same time this just proves that I have a disease that unfortunately can be given to other people.
Instead of getting married and starting a family, I am instead trying to cure myself and girlfriend and heal from all the damage this disease has caused both of us. While I am currently able to manage our symptoms with drugs, herbs, and supplements, I don’t really know what it is going to take to cure us completely. We are stuck in a holding pattern and have been for several years now while we have been battling this disease. Our friends and family don’t really seem to understand what we’re going through no matter how many times we’ve explained it to them. They keep expecting us to get married, and start a family, when the truth is, there’s days we are fighting to barely even function. With all of our money going to medical care, there is no way we can have a child or even afford to get married right now.
I’ve reached the end of what my research capabilities and financial resources are capable of, and need help, love, compassion, and support to find a cure for both of us.
I could save money if I leave the Bay Area, but this is where I grew up as a kid. This is home, this is also where my family and my girlfriend’s family live. It is also where my doctors are who are keeping me functional and alive. Just like how I stubbornly didn’t want to lose a race skiing to my little brother after breaking my leg, I stubbornly don’t want to leave where I was born because I got sick. Something about that just doesn’t sit right with me. This is also where the industry I work in is, and I really can’t imagine moving just to save money just so I can afford more medical care. Although it is a reality I might have to accept soon if something doesn’t change.
Between everything I am currently doing to take care of myself, I’m miraculously still able to work, never miss meetings, and always do whatever it takes to meet deadlines, interview some of the world’s most amazing people on my podcast, and write when I have spare time.
I don’t want publishing what is going on with my health to hurt my ability to work, nor do I want people to look at me as less-capable or weak. The fact of the matter is everything I’ve ever accomplished was done while I had Lyme disease, so that should hopefully speak to my work ethic and ability to get things done. As I get better and put this disease into remission, I will only become more productive over time. However, there is a vulnerability to exposing myself like this. Some people and doctors legitimately do not believe chronic Lyme disease even exists, even though there are dozens of medical research studies proving it, and I can prove it with both blood test results and a Bartonella rash on my back. Even if I don’t meet CDC criteria, I still have chronic Lyme disease.
Getting diagnosed with chronic Lyme disease today is kind of like getting diagnosed with HIV 30 years ago. If I can live long enough to find a cure, I might survive, but if I get any kind of complications, I could end up disabled or dead. This is a disease that needs to be tackled head-on; my body, immune system, brain and nervous system are damaged and need to be repaired. My life expectancy has likely already been impacted and most of my dreams are on hold.
Despite my perseverance, I am afraid that I will never be able to start a family of my own, or achieve any of the things I have set out to accomplish with my life. My dreams are on hold as all of my energy goes toward healing.
Through all of this, I have learned that there are things in life more valuable than money, such as love, relationships, and connection. For all the numbers on a computer screen that represented money that I used to have, I now have a healthy relationship, a canine friend, and am surrounded by people who love me even if they don’t understand what I have been through and continue to go through. That is why I wrote this, so that others can finally understand what it means to have chronic Lyme disease.
One of my gifts has always been my ability to articulate complicated subject matters, whether it is technology or science, and explain it to others. I hope this series has accomplished that goal.
My meditation practice has lead me down a much healthier path, and I rarely experience PTSD symptoms anymore, and it has been a while since I had a panic attack. The longer I’ve been off psych medications, on CBD, meditating daily, doing yoga, taking herbs, anti-Lyme medications, and eating organic, the better I feel. Meanwhile, now that I know I have Lyme disease and heavy metals, I can finally address the root of my health issues and boost my immune system, and detox them from my body.
I absolutely do not want this disease. It has taken me nearly a year of meditating on this, writing, editing, as well as spending my savings on testing and treatments to even get me in a position to be able to publish this. If you’re reading this now, that means I finally had the courage to hit publish and ask for help.
If we’re going to play devil’s advocate here, and if my story so far isn’t enough to convince you that I have chronic Lyme disease, that’s fine. Even though I no longer waste energy questioning it, what I have realized is if this is not Lyme disease, I am ultimately still sick and all my symptoms are still real and require treatment. Even if it is just figuring out how to fix my neck and jaw, or reverse the surgery I had, I still need medical attention. My immune system is still impaired, my body is still riddled with pain, and if I can’t heal or cure whatever is causing my symptoms, my future is limited at best.
All I care about is getting better so that I can be the man I am supposed to be.
This is my story, this is my life, and despite all my pain and all the horrible things I’ve been through, I still love myself and humanity. I want to heal so I can continue to speak my truth, fight injustice, educate, create value for others, start a family, and have a positive impact on this world.
From this moment on I am no longer holding back, and I will no longer remain silent. I am not going down without a fight.
Please consider supporting me on Patreon, contributing, or contact me if you know something I don’t or know someone who can help. I will be writing more articles soon, as well as documenting my treatment methods and progress.
If you’ve made it this far, you’re clearly invested in my story, and for that I am truly grateful for the opportunity to be able to reach so many people.
From the bottom of my heart, thank you for taking the time to read my story.
My girlfriend and I need your compassion, love, wisdom, and healing energy to help us on our journey.
Read Chapter One: Misdiagnosed for 27 Years
Read Chapter Two: The Battle for Sanity
Read Chapter Three: Chronic Lyme Disease with Co-Infections
Read Chapter Four: Present Reality (This Chapter)