Misdiagnosed: The Battle For Sanity
Chapter Two of Misdiagnosed: The true story of my life and battle with chronic illness, doctors, surgery, and the American healthcare system.
I honestly don’t know how or why I survived Serotonin Syndrome or the high doses of drugs the hospitals gave me. I wasn’t in any frame of mind to be aware of the reality that the hospital basically put me in an Ativan-induced coma and sent me home without monitoring me. I easily could have died. How my heart kept beating I will never know.
After this I fired all my doctors who had advised me to take the SNRI while discontinuing the SSRI at the same time without tapering. I then found a new doctor, and had to go back on the original antidepressant I was on to try and stabilize my antidepressant-addicted brain. It turns out SSRIs may also make bacterial infections resistant to antibiotics. Go to hell Paxil.
The woman who saved my life that horrible night and who cared for me afterward broke up with me and I never saw or heard from her again. I don’t blame her, I was obviously a mess, but I do wish I could thank her for saving my life. Maybe she’ll read this.
The new psychopharmacologist I hired tried to convince me I was bipolar, and weaned me off Paxil way too quickly, spiraling me into a major withdrawal while putting me on mood stabilizers and antipsychotics. I somehow found myself back at the same hospital I was born at in San Francisco after the new medications this doctor had me on put me back in the hospital again with an abnormal EKG (which is when the photo above was taken).
I fired that doctor, and went off all the drugs except the Hyoscyamine for my sweating and IBS. No one, including me, thought to consider that the Hyoscyamine was actually making all my issues worse as well. I had so little accurate information about anything the doctors were doing, that I didn’t know who to trust anymore.
In the midst of all of this I found myself homeless. I was fairly unstable after everything I had been through, and was still suffering from major PTSD episodes wondering if I was to blame for my ex-girlfriend who tried to kill herself, searching for my Mom’s murdered friend’s body in the Caribbean, losing two dream jobs and my apartment, and frying my brain with psych meds. I had nowhere to go and couch-surfed at friend’s houses for a few weeks. I never realized the luxury of being able to store food before this experience, and I was still suffering from the side effects of Serotonin Syndrome and the Ativan-induced coma. I lost some time and memories of those months, and I still can’t remember them.
I then reconnected with my old best friend who had hooked up with my ex-girlfriend who tried to kill herself. When he and his parents heard about everything I had been through, they let me live with them for a few months while I was withdrawing off all the psych meds. I had maxed-out my credit cards staying in motels when I couldn’t find a couch to sleep on, and was living off unemployment.
I eventually moved back to my Mom’s house in Huntington Beach after Dateline aired a story about her murdered best friend, but that’s a whole other story I’ll write about later. In the aftermath of 2008, Bank of America then illegally began the foreclosure process on my Mom’s house.
It took about 6 months, including going to Narcotics Anonymous meetings at the advice of a psychologist before I was semi-functional again. The Serotonin Syndrome and all the different medications I was put on really did a number on my brain. My memory has never been the same since, and continues to decline. I realized at N.A. that psych meds were actually worse than half the illegal drugs, and much harder to get off of. I was doing worse coming off antidepressants than people kicking supposedly much worse illegal drug habits. Meanwhile my “IBS” had become completely unbearable because I had also quit cannabis, the only drug that actually helped me.
I was still on unemployment while all of this was happening but it was quickly running out so I got a job working at a medical research company and tried to get my life back together. I moved out and gave my dogs to a family friend, but she wasn’t able to keep them so I took them back and moved in with my best friend and his girlfriend in 2010.
Through no fault of my own they broke up, and she moved out. Broke and desperate, my best friend and I started CyberChimps, the startup I eventually bootstrapped to $1 million in revenue then sold for an exit 5 years later. Despite all my health issues I still managed to accomplish something incredible (you can read more about those 5 years of my life here).
My primary goal was to make enough money to be able to afford my health insurance so I could figure out what was wrong with me. After we started making money, I found new doctors which yet again convinced me to go on antidepressants. This time I tried Tetracyclics and Tricyclics as well as more Benzodiazepines. I was still suffering from major GI (Gastrointestinal) distress, anxiety, depression, and the stress of running a successful startup made everything that much worse.
My startup took off, and we started making a ton of money, but my best friend and now business partner and I were both miserable. I was right back to being stuck in an antidepressant-induced haze, and I found myself in an incredibly unhealthy relationship with someone else who also had anxiety issues. I was struggling to take care of myself and my dogs even though I had plenty of money, and nothing was helping because no one ever knew or thought to test me for chronic infections. I continued to get worse, dealing with all the side effects from the horrible psych meds they were giving me, and my health continued to decline despite going for 4-mile runs by the beach in Long Beach several times a week with my dogs and ex-girlfriend.
At this point, I was completely brainwashed into believing I was bipolar, despite the fact I had only experienced hypomanic-like episodes induced by SSRIs, and those episodes were all triggered by increasing the dosage or from their withdrawal symptoms. I never organically had any kind of manic episode, was labeled NOS (Not Otherwise Specified), and was pretty much told all my physical symptoms were a manifestation of my mental illness, including my IBS.
I was never suicidal, I never had a psychotic break from reality, and was never committed to a psych ward. What I did have was some serious emotional trauma and PTSD from everything I had been through, and physical ailments that were real.
As I explored a bipolar diagnosis and got to know more and more bipolar people it became clear to me I was not suffering from the same condition. While I do believe I am probably on the bipolar spectrum, I’m Cyclothymic at best, and even so, I’ve been completely in remission going on 4 years now since getting off psych meds. Funny how that works, it is almost as if the psych meds they put me on made me present as bipolar when I really wasn’t. Hmm.
Since I don’t really have any symptoms of bipolar Disorder anymore and know what is actually wrong now, it is hard for me to identify with this diagnosis. I believe much like my “IBS,” and other conditions, I was misdiagnosed as bipolar or at the very least my diagnosis was severely overstated as the psychiatrists completely ignored everything I was going through physically.
By this time, my hair was literally falling out in chunks, and I was diagnosed with Alopecia Areata. I had to get steroid injections in my scalp to regrow my hair. Not a fun experience.
Meanwhile, my best friend and business partner was battling his own demons. Money just seemed to make both of our mental health issues worse. Things eventually hit a boiling point, giving me leverage to force him out of the company, so I did. At the time, I was mostly in shock and in a haze, which doesn’t by any means excuse my behavior. I did what I thought needed to be done at the time to protect the company and the rest of our employees. I can’t say I regret it given everything that went down, but I do wish I handled it better.
By the end of 2012, I added yet another girlfriend to my list of exes and unhealthy relationships, and my business partner and best friend was gone, this time for good.
I decided to move to San Francisco alone to try and find myself and rebuild my company. Rent prices were skyrocketing and I was unable to find a place that let me have dogs, so I left my dogs with my Sister in Long Beach in my old apartment. I sent her money to help take care of them. My intention was to find a new apartment within a year that would let me get them back. I regretted leaving them immediately, and unfortunately my Sister found them another home before I could find a dog-friendly apartment, and I was unable to get them back. Luckily, they are happy in a good home with a retired couple, and are doing well.
Even so, losing my dogs felt like abandoning my children. However, I have since adopted a rescue pup named Monty, who is now my emotional support animal.
San Francisco 2013 and Beyond
By the time I moved to San Francisco in 2013 I was on five different medications including Hyoscyamine, Ativan, two atypical antidepressants, and an atypical anti-anxiety drug for all my health issues. I was emotionally numb, CEO of a tech startup making $30–40k per month, recently single, and once again without my best friend and business partner. Yet somehow I quickly found myself in a new relationship with one of my best online friends from my early teens, as we were both now in San Francisco at the same time.
For some reason I always kind of assumed I would end up marrying her. She had been visiting San Francisco, and was considering going to college to become a doctor in the Bay Area. Things got serious way faster than I could handle.
My Mom had become deathly ill while in the Caribbean, as she eventually relocated to the island her friend was murdered on. I was checking in with her on Skype daily when she took a turn for the worse, so I hopped a plane to New York that night and got a connection to the island the following morning. Met my Mom on the island and took her to Miami. By the time we got to Miami she was feeling better and we decided to try and make it back to San Francisco before going to the hospital. We finally made it back to San Francisco, and checked her into the ER. Her vitals were all over the place, her white blood cells had crashed, and we thought she was in serious trouble.
My friend knew the doctors at the hospital and when she found out what was happening, she came to the hospital to see if she could help. They kept my Mom overnight for observation, and my friend ended up taking me home that night and spending the night with me. At the time we thought my Mom might have some kind of major disease or health problem, but in the end it turned out she merely had a horrible flu and one of the medications she was on had crashed her immune system. Once we got her off the meds, her immune system rebounded and she recovered within a few weeks. This somehow kick-started an intimate relationship between myself and my friend for the next couple months that neither I nor my friend were ready for. That relationship eventually also sadly fell apart.
Jumping quickly into a relationship like that, and losing it just as fast left me heartbroken and alone again. We still talk occasionally, but haven’t seen each other in person since.
Someone had left a joint at my house, and on 4/20/2013 I went to Golden Gate Park alone and smoked it. Having quit cannabis at the recommendation of all my idiot doctors and only occasionally taking a hit at a concert or when someone else offered it to me, I hadn’t smoked a joint of my own in years. The high I experienced that day was incredible.
I felt all the physical and emotional pain and tension of the past several years release, and in those moments I had a series of epiphanies that forever changed my life.
Those epiphanies eventually lead me to get off all my prescription medications, seek healthier and happier relationships, and ultimately love myself again.
After attending 420, I decided to reconnect with my Bay Area roots and started experimenting with cannabis again, and kept a mood diary of all the times I used it. I was also recording days I didn’t use it as well. After a few months, several trends emerged. The days I smoked, I was happier, and my digestive symptoms and pain reduced significantly for days afterward. Even my joint issues lessened, and I was more creative, active, and productive. The days I didn’t smoke, my immune system crashed, I had more inflammation, and my mood was more anxious and depressed.
The more I used cannabis, the more the epiphanies continued and eventually lead me to start attending a weekly meditation group to try and reconnect with my intuition. I started becoming aware of what all the drugs were doing to me, and decided to get off them once and for all. With the help of a new doctor, I began to reduce my doses and slowly weaned off all my medications over the next year. Getting off Benzodiazepines was one of the hardest things I have ever had to do.
Toward the end of 2013, I found myself in a new healthy relationship with my current girlfriend (going on 5 years together now), and finally started a new chapter of my life.
Removing each drug was like removing layers from an onion, revealing my actual symptom profile and removing all the drug side effects as variables from the equation that was my actual health.
I was successfully able to use cannabis as an exit drug to get off all my other medications, including managing a year of withdrawal symptoms from antidepressants and benzos. I also began an all-organic paleo and keto-influenced diet, and started practicing yoga 3–5 times per week and eventually started meditating daily.
The diet, yoga, meditation, and cannabis combined, quickly transformed my health. However, despite everything I had done to improve, I started getting new symptoms like kidney stones, which sent me to the hospital again with high blood-pressure, rashes, and even a UTI (Urinary Tract Infection), which are not nearly as common for men.
Then in 2014, I got severely sick and had diarrhea for a month straight. Foolishly, I went back to the doctor and went on yet another round of antibiotics. Just like during my teens and when I was 4-years-old, I got really sick from the antibiotics with flu-like symptoms, then recovered, but then my symptoms came back worse a few weeks later. Further testing indicated I had SIBO (Small Bacterial Overgrowth), which was causing the severe episodes of diarrhea.
After the antibiotics failed, I decided to treat this condition myself by going on a Specific Carbohydrate diet. The first few months were not pleasant, as I regularly experienced die-off episodes of bad bacteria, which resulted in major GI symptoms, including more severe diarrhea. After several months of consuming mostly organic bone broths with some veggies, I started digesting fats, proteins, and even vegetable fibers properly again as the die-off episodes lessened. Previous to this, I could not digest a salad as my body was unable to digest any kind of insoluble fiber. It took nearly a year to heal my intestinal lining, and manage my SIBO successfully using this strict diet.
I was finally on the path to healing myself, or so I thought…
By 2015, I was still off all prescription medications, and was finally feeling well enough to experiment with adding natural sugars and carbs back into my diet. I had a moment of clarity and sold my startup, then went on a 3-week vacation to Hawaii where I was easily tempted into eating the organic honeys and fruits available on the islands. I began eating a lot of pineapple which contains the enzyme bromelain which can break up biofilms, a protective layer that forms around fungus, bacteria, and other parasites, which allows them to hide from the immune system.
Unfortunately, my health declined rapidly in Hawaii both physically and mentally. I don’t know if my biofilm theory is correct, or if I got bitten by a bug and got some other kind of co-infection like Babesia, but whatever happened in Hawaii I relapsed hard. On my way home from Hawaii, I started experiencing vertigo on the plane, began sweating profusely, and experienced what felt like a 5-hour-long panic attack. I did not fly again for nearly 3 years after that for fear of having another episode of vertigo.
I thought perhaps I had a parasite, and began a cleanse when I got home. The anti-parasite herbs I took put me into a full on Herxheimer reaction or herx reaction, a toxic reaction with flu-like symptoms, for nearly a week, which I spent in bed. Herxheimer reactions are caused by the release of harmful endotoxins that get released into the body as a byproduct of killing a harmful microorganism. They cause a range of painful symptoms that resembles sepsis, including: fevers, chills, rigor, hypotension, headaches, tachycardia, hyperventilation, vasodilation, myalgia (muscle pain), inflammation, skin lesions, anxiety, panic attacks, and other mental health symptoms.
I started experimenting with different anti-parasite agents, and found that I was reacting to the antifungals and antimicrobials. Matched with the rashes I was experiencing, I concluded I likely had Candida. I responded somewhat positively to antifungals, so I spent the next year taking them and stayed on an anti-Candida-inspired keto diet free from all sugars, but failed to eliminate my Candida symptoms completely. The herbs and diet merely kept the rashes and Candida symptoms in remission, but didn’t seem to be treating the root cause. Every time I backed off the herbs, the rashes came back immediately. Meanwhile, my girlfriend started presenting with a rash on her back, and chest, which is still not fully resolved as of publishing this.
I was taking a lot of supplements and herbs to fight Candida, which ultimately caused another kidney stone shortly after my 30th birthday in 2016. This time it caused another UTI and a prostate infection on the way out. I tried to treat the prostate infection with quercetin after reading some medical research studies and it kept the infection in remission, but it too would not go away completely. At this point, I had given up on doctors.
By now it was well into 2016 and I was frustrated. I had managed my SIBO through diet, healed my intestinal lining, was able to eat plants and veggies again, still continued to meditate daily, and was still doing yoga regularly, but couldn’t eat sugar or overcome the rashes I kept getting on my chest, the brain fog, inflammation attacks, headaches, and fatigue. Meanwhile, my latest blood test indicated my immune system was still impaired despite all my lifestyle changes.
I got off most of the antifungals and only stayed on a few things that seemed to be helping, which were antimicrobials. At the recommendation of a friend at the end of 2016, I then decided to try Iodine supplementing, as it is a powerful antimicrobial and kills parasites.
I took an average dose of Iodine and experienced another major Herxheimer reaction that disabled me for nearly two weeks with massive inflammation, headaches, fevers, and flu-like symptoms. I went back on Iodine at very low doses, and slowly worked my way up to a larger dose over time, and as I did, my Candida symptoms mostly became a thing of the past. With my Candida no longer symptomatic, I was still experiencing other symptoms that did not fully match Candida, including the lingering prostate infection, swollen lymph nodes, as well as worsening joint pain in my neck and jaw.
My neck and jaw pain was getting so bad I was no longer able to sit and use a computer anymore and had to switch to a standing desk. I decided to try high doses of buffered Vitamin C and turmeric for my joints, and after a period of weakness, my right knee pain lessened significantly and my flexibility started to improve. After several months of high doses of Vitamin C and turmeric, my now decade old injuries finally started to heal.
While I was correct that Candida caused my SIBO in 2014–2015, I realized that Candida was NOT the cause of my other symptoms and was merely a symptom of something systemic. Candida is commonly just the result of a weak immune system, and not so much a disease but rather a function of the body when it is weak. The role of fungus is complicated, but basically it is what starts breaking down your body after you die and plays a part in digestion. For some reason my immune system was so weak my body was already trying to break itself down in preparation for my untimely demise.
Despite not wanting to, I went back to the doctor to get another blood test, and then compared it to all my other blood tests and discovered my lymph cells were increasing rapidly over the past 4 years, and my neutrophils had been declining significantly despite all the improvements I had made to my health and lifestyle. This was a clear indication my body was still fighting some kind of infection. Realizing this was beyond Candida, I began researching what could have caused all of my symptoms for the past several decades collectively and came to a single possibility.
Suddenly, everything I’d been through my entire life made sense from my near-death childhood experience, to my sweaty hands, rashes, digestive issues, SIBO, Candida, joint issues, suppressed immune system, headaches, kidney stones, UTIs, high blood pressure, prostate issues, mental health issues, anxiety, depression, and supposed cyclothymia or bipolar disorder.
All of these things are symptoms of Lyme disease, even my TMJ, neck, and shoulder pain are well-known and documented Lyme and co-infection symptoms.
Have I had Lyme disease and multiple co-infections this entire time?
Read Chapter One: Misdiagnosed for 27 Years
Read Chapter Two: The Battle for Sanity (This Chapter)
Read Chapter Three: Chronic Lyme Disease with Co-Infections
Read Chapter Four: Present Reality