Misdiagnosed: Chronic Lyme Disease with Co-Infections
The Third chapter: The true story of my life and battle with chronic illness, doctors, surgery, and the American healthcare system.
In 2017, I realized I either have chronic Lyme disease or some mysterious illness with exactly the same symptoms. In 2018, I finally proved it.
Thanks to Obama Care, I was forced off my PPO insurance plan, and could only afford to go on an HMO. I booked an appointment at Kaiser, had a series of tests done and when I asked to be tested for Lyme, the doctor refused. I even followed up via email to request a Lyme test and was denied. Upon further research, I discovered that Kasier does not recognize chronic Lyme disease, and still follows a criminally-outdated CDC (Center for Disease Control) protocol, which is a mere 10–21 days of antibiotics. I’ve been on enough antibiotics in my lifetime to know that whatever I have is not going to be cured by more antibiotics. It also explains why every time I took antibiotics, I would experience flu-like symptoms, get sick, recover, and relapse like clockwork.
I had started to reach out to people I’d met online who had Lyme disease, and told them my symptoms. Everyone I spoke with agreed we shared similar symptoms and experiences. I posted on every Lyme forum I could find, and took the Horowitz questionnaire often used by Lyme-literate doctors. I scored double the total that predicts you have the highest probability of having Lyme disease.
In 27 years, how the hell did not a single doctor I had seen think to test me for Lyme disease?
Lyme disease explains everything: from my digestive issues, profuse sweating, joint pain and joint issues, rashes, sinus infections throughout my childhood, my chemical sensitivities, food allergies, weak bones, muscle weakness, fatigue, brain fog, neurological symptoms, EMF (Electromagnetic Frequency) sensitivity, and even psychological depression and anxiety without meeting the criteria for major depression or bipolar type 1 or 2 (hence the bullshit Not Otherwise Specified diagnosis I received).
Meanwhile, that rash on my back is clearly Bartonella. Google “Bartonella rash” and it may as well be a photo of my back. I’ve had that rash for at least 18 years, and I’ve showed it to at least half a dozen doctors and not a single one of them recognized it as Bartonella. How this is even possible I have no idea; clearly every doctor I’ve ever seen was not educated on Lyme disease or Bartonella.
Lyme also explains the later symptoms such as: kidney stones, prostate infections, bladder infections, a Candida co-infection, Babesia, and injuries that didn’t heal properly including whiplash and TMJ issues. I was shocked to find out that almost all of the foods I thought I had allergies to such as garlic and stevia were in fact all foods that kill Lyme disease. This whole time I was avoiding the very things that could have treated what was wrong with me because my idiot doctors had convinced me I was allergic to them. Those weren’t allergic reactions, they were just killing Lyme and causing toxic herx (Herxeimer) reactions.
Did I seriously just figure out what was wrong with me? Everything was making sense, but I was afraid this was all just confirmation bias.
After Kaiser refused to test me, I picked up a copy of Healing Lyme by Stephen Buhner, and I began experimenting with herbs to treat Lyme disease myself and see how I reacted to them. Much of Buhner’s protocols included supplements and herbs I was already on and had found on my own. Although I discovered a few new herbs which made a world of difference in my digestion, and even healed some of my lingering injuries. I started improving slowly as a I started microdosing with different herbs that have been shown to treat Lyme disease, but unfortunately started experiencing serious herx reactions as I worked my doses up. During my research I also discovered that cannabis can help manage and treat the symptoms of Lyme disease.
I spent a great deal of time thinking about why I started getting sick in Hawaii back in 2015. Although I clearly had lingering Lyme and Bartonella symptoms long before I went to Hawaii, something either broke apart biofilms causing a Lyme relapse, or I contracted a new co-infection (like Babesia) possibly through a new bug bite. With my immune system already weakened from Lyme and Bartonella something happened in Hawaii. I left three weeks later an anxious, physically ill mess with vertigo, which resulted in my five-hour-long panic attack on the airplane. This would explain why I was having such extreme herx reactions when I came home and took anti-parasite herbs which caused me to breakout in rashes. It also explains why my girlfriend was covered in rashes after we went to Hawaii as we were both likely exposed to Babesia.
Previous to realizing I might have Lyme disease, I had been seeing an acupuncturist back in 2016 who figured out that I had deficiencies in many vitamins such as magnesium, which is also common with Lyme patients. She tried to treat me with Chinese herbs, which also put me into herx reactions. I spent most of 2016 trying to recover from extreme adrenal fatigue, herx reactions, and battling Candida, and randomly getting new co-infections.
Over the course of 2017, I slowly began to realize how every diagnosis I’ve ever had was wrong. Everything was actually connected the entire time, and these were all merely symptoms of a systemic chronic Lyme disease infection with multiple co-infections including: Bartonella, Babesia, and Candida. Even the meningitis diagnosis I had when I was four was possibly wrong; that was likely when I first got Lyme. This would explain why when they did the spinal tap they didn’t find anything, as far back as the late ’80s, they had no clue to look for spirochetes. Meanwhile, I got Bartonella when I was in 8th grade and do not know if I was re-exposed to Lyme at this time or if I simply contracted Bartonella in addition to already having chronic Lyme. In 2015, my girlfriend and I likely picked up Babesia in Hawaii further crashing both of our immune systems and sharing infections.
Is it possible these co-infections became so severe and the reason my immune system failed to fight them off is because the Lyme had been suppressing my immune system this entire time?
Postive For Lyme
Growing up in America these past 32 years and spending hundreds of thousands of dollars on medical care, you’d think I would have received the best medical care in the World, but I didn’t. The reality is I had to diagnose myself, then pay out of pocket for the tests to prove it clinically. Even so, my positive Lyme disease test still doesn’t meet CDC criteria despite the fact I have all the symptoms of Lyme disease, have Bartonella scarring on my back, have had multiple Lyme-like rashes, get classic herx reactions, I am positive for multiple Lyme antibodies, have multiple co-infections, and I am slowly improving while taking anti-spirochete herbs and medications.
Even though my test results don’t meet CDC criteria, the rashes on my back and body along with all my other symptoms all clearly point to a chronic Lyme disease with co-infections diagnosis. It is simply undeniable at this point, and anyone who disagrees with the existence of chronic Lyme disease clearly has no idea what the hell they’re talking about.
All those years of doctors telling me my blood tests were normal despite the fact my lymphocytes were chronically high and my neutrophils chronically-low, matched with the constant sweating, rashes, GI issues, Bartonella scarring, and joint pain, it should have been clear to pretty much any doctor I had ever seen that I was dealing with some kind of spirochete infection with co-infections.
Due to the stupidity of our medical system, I’ve had doctors literally make attempts at my life and sanity with dangerous psychiatric drugs, nerve damage surgery, and painfully obvious misdiagnosis. Many of the doctors I saw actually believed they were helping me; in reality, they were torturing and poisoning me, and some of them took advantage of me while I was too sick and weak to question them.
Meanwhile, several psychiatrists attempted to brainwash me in some messed up MK Ultra-like experiment to bend reality to their will, claiming my symptoms were a manifestation of mental illness instead of acknowledging my physical condition as legitimate medical symptoms. It was much easier for them to dismiss my symptoms even when rashes looked them straight in the face and instead question my sanity for stating something was wrong, and that I was sick.
Heavy Metals: Mercury and Aluminum
In 2018, I tested positive for heavy metal poisoning, including mercury and aluminum, both of which are suppressing my immune system further. How I got heavy metals in my body I have no idea. One theory is that Lyme disease disrupts the body’s ability to detox properly so normal amounts of metals that easily get filtered out of a healthy person get built up in someone who has Lyme.
I did have amalgam fillings for many years as a teenager, and suspect this could have been where I was exposed to mercury. I unfortunately had these fillings improperly removed by a normal dentist around the time my life was in chaos in 2008–2009. Meanwhile, the area where I have the most acute pain to this day is my right jaw where these fillings once resided. I suspect there might be some kind of jaw infection I can’t afford to investigate properly.
To make matters even more complicated, I analyzed my DNA and discovered I have a snippet of an MTHFR mutation which impairs my ability to produce all the enzymes I need to properly detox. I am now taking the appropriate B-vitamins to address this issue, as well as taking several other detox herbs and supplements.
For years I begged my doctors to test me for heavy metals, and even got Kaiser to perform a basic blood test for mercury in 2017. Unfortunately that test was inconclusive, and I had to pay out-of-pocket for this hair analysis test to get the results above. I’m currently taking raw spirulina to try and bind to some of the heavy metals and excrete them, as I can’t really afford a proper chelation protocol.
The fact of the matter is none of this is in my head; I am not a hypochondriac, and I have clinically-verified proof of my ailments including: rashes, Lyme antibodies present in my blood, and heavy metals in my hair. I am actually sick; I now know with what, and I am slowly getting better with treatment, despite decades of damage and misdiagnosis.
So what the heck is Lyme disease?
Lyme disease is caused by a parasitic spirochete called Borrelia burgdorferi. It is technically a corkscrew-shaped bacterium. However, it is in a class of its own when compared to other bacteria. It is commonly mistaken that Lyme disease is a simple bacterial infection. However, it has characteristics that make it unusual. One of those characteristics is Borrelia’s ability to form what is called a biofilm. While biofilms are not unique to Lyme disease, the biofilms that Borrelia produces are particularly tricky given its shape and ability to burrow into organs, joints, nerves, and brain tissue.
Borrelia can even form biofilms to hide itself from the immune system and antibiotics or other antimicrobial agents. This is one of the mechanisms that enables Lyme disease to become chronic, and why treating with just antibiotics is not scientifically logical. To properly treat Lyme disease, you need to target the biofilms just as much as you need to target the spirochetes themselves. Once I learned what a biofilm was, suddenly everything made sense with my own medical history. Every round of antibiotics would put the disease into remission, but also caused it to go into hiding for it to later resurface any time my immune system weakens.
One of the other unusual characteristics of Borrelia is its ability to produce what are called persister cells. These cells are capable of causing a relapse of Lyme disease even if you eliminate an active infection. In other words, if you wipe out an infection, but a persister cell remains in an organ or in a biofilm and the environment becomes survivable for Borrelia burgdorferi again, then you can experience a full relapse of the disease that may potentially be antibiotic-resistant (see linked study above).
To put it simply, Lyme Disease evades the immune system like a virus, yet protects itself like a parasite. The range of symptoms that are called “Lyme disease” are actually the result of a spirochete infection, which has the capability to cause relapse due to persister cells and biofilms. Meanwhile, many doctors don’t even acknowledge that Lyme can be sexually-transmitted, yet I potentially gave it to my girlfriend as she now has many of my symptoms. While the exact mechanism of how it is transmitted sexually still needs to be researched, it is unfortunately a possibility that hasn’t been fully ruled out yet as existing studies are contradictory.
What we now call Lyme disease truly is a parasitic organism; it can go into remission, potentially become antibiotic-resistant, and hides itself from the immune system to become chronic. Meanwhile, the U.S. Government, CDC, and pharmaceutical companies refuse to accept the science behind chronic Lyme because they don’t understand it, and don’t have any way to profit from it. They would rather let people like me become disabled and die without proper medical care, than admit the truth that this disease can’t always be cured by a round of antibiotics, and once it goes chronic, does not have a proven cure.
To put it simply, a chronic spirochete infection is a “super bug” that has become antibiotic-resistant.
What does Lyme disease feel like?
Lyme disease sucks the joy and happiness out of almost every experience.
It feels like I am not in control of my body, my brain, my nervous system, or my life. The worst part about Lyme disease is the reality that I cannot trust my body to function as intended at any given moment. Every day I have different symptoms from headaches, fatigue, muscle pain, muscle spasms, gastrointestinal issues, inflammation, detox issues, joint pain, profuse sweating, intense brain fog, rashes, fevers, chemical sensitivities, and other health problems. I never know how I am going to be feeling on a given day no matter how much planning or preparation I do before-hand.
Even so, I pretty much have to plan everything in advance no matter where I go, or what I’m doing. Due to my digestive issues I rarely eat out, and don’t eat anything I can’t identify. At this point, I have to bring food with me everywhere I go, or opt to fast when I’m out so as not to risk eating something that might make me sick. I trust a few restaurants I’ve been able to eat at before without getting sick, but even then it is still a risk.
Due to my damaged nervous system, chemical sensitivities, and food intolerances, I cannot eat anything with dairy, gluten, antibiotics, hormones, or that contains glyphosate (a herbicide that has been found in the food supply that potentially causes cancer). Even genetically-modified foods make me sick, and I can only tolerate organic produce that has been prepared with water that does not contain fluoride and other harsh chemicals. I am basically a canary for all things toxic to the human body, and can sense and feel toxic exposure from chemicals, bad food, pollution, and contaminated water. This makes birthday parties, weddings, BBQs, or even just going out to dinner with friends extremely difficult. I pretty much only eat food from local farms that we know don’t use harsh chemicals, antibiotics, hormones, or genetically-modified ingredients.
One of the worst sensations that occurs is a pressure in my head that is accompanied by a fogginess and fatigue that prevents me from thinking and processing information clearly. Sometimes I wake up completely brain-fogged and it eventually wears off; other days I wake up fine and my brain fog creeps up on me and gets worse throughout the day. It has put a major damper on my creativity, ability to read books and longer content, as well as write, which as a writer and journalist is pretty much torture; this is why I’ve been exploring other media forms such as podcasting.
I have to prioritize and create realistic plans knowing that I might have major fatigue, and have a limited amount of energy per day to accomplish my goals. For example, if I plan to go to a family event, I have to not do anything else that day and conserve my energy for that event. It is kind of like waking up every day with a gas tank that is almost empty, and I have to predetermine where I want to spend my energy on a nearly-daily basis, otherwise I will run out of gas before getting to the next gas station. I have to do everything carefully, and take the time and consideration to do whatever I need to do properly without risking my greater health.
I have created a number of systems and use many lifehacks both in my professional life, as well as my personal life to ensure I am able to keep my commitments and bring value to others. Most of the time, I just have to grit through the pain and get things done no matter how I am feeling. I often have to spend my weekends exhausted and recovering so I can even function the following week. Even so, sometimes I just crash randomly and have to go home, sleep, or take a detox bath.
Lyme disease feels like my brain and my energy are being stolen by a parasitic organism that does just enough damage to make every task that much more difficult without actually killing me. While Lyme disease has taught me many lessons, and in a weird way, helped me learn how to manage my time and energy more effectively, it is still a horrible reality I wouldn’t wish upon my worst enemies.
How did I get Lyme disease and co-infections?
The most likely explanation is that I was bitten by a tick at the daycare center at San Francisco State University when I was a child, which is where I was daily when I first got sick at 4-years-old. Despite being only 4, my memories of that time period are still vivid, almost more vivid than my teens and twenties for some reason. I can even tell you the names of people who visited me in the hospital when they thought I was dying. Those few weeks of my life have always haunted me. Despite being only 4 at the time, I knew I was close to death.
The daycare facility I was at had animals outside in the garden where I often played, and the odds of getting bitten by a tick in that environment were incredibly high. I do not recall presenting with a rash or being bit, but neither do many Lyme patients. Aside from a high fever, my main symptom at the time was a stiff neck. Even if I didn’t get bit at SF State, I could have just as easily been bit at home in Marin County, which has just as many ticks, if not more. It is also entirely possible that I did just have Meningitis, and didn’t get Lyme until I got Bartonella around the year 2000, but many of my symptoms did start previous to getting Bartonella, so it is hard to say. My health was never the same after I was 4, which is why I suspect this is when I first got Lyme disease. I’ve also confirmed there were other Lyme cases in the late ’80s in the Bay Area around the time I was potentially bitten.
I grew up as a true child of the Bay Area, so I was often in San Francisco, San Jose, Saritigo, and spent the majority of my childhood outside in the hills and grasslands of Marin County, hiking and riding my bike. I’ve been bitten or stung by dozens of different kinds of spiders, mosquitoes, fleas, flies, bees, and other bugs over the years. I don’t doubt I was bitten by ticks as well. I have always loved animals, had a pet rabbit, birds, lizards, and many of my friends had cats and dogs who I spent time with regularly. Meanwhile, my ex-stepmom had both cats and a dog after my Dad remarried around the time I got Bartonella. I’ve also spent several months of my life in the Caribbean and several weeks in Hawaii, where I could have easily been exposed to other parasites and co-infections.
I suspect the antibiotics the doctors gave me when I was 4 wiped out the initial infection along with my gut flora, saving my life, but didn’t address the chronic infection that burrowed into my joints and organs, and hid behind biofilms. All the future rounds of antibiotics I was given for co-infections weren’t enough and just further drove the disease into periods of remission.
All those times I got sick as a kid where co-infections and viruses attacking my weakened immune system. While I do believe antibiotics can treat some Lyme cases if caught early, based on my research, the time required for treating chronic cases typically takes a year or more of antibiotics, and there is no way my body can handle that now. The only way I’m going to get over Lyme disease at this point is to find a solution that doesn’t wipe out my digestive system again. Another extended round of antibiotics could be catastrophic.
Read Chapter One: Misdiagnosed for 27 Years
Read Chapter Two: The Battle for Sanity
Read Chapter Three: Chronic Lyme Disease with Co-Infections (This Chapter)
Read Chapter Four: Present Reality