Lyme/Long-COVID Notes
I'm still publishing my series on my journey with Lyme and Long-Covid, but to spare everyone the trouble, I have my main principles and epiphanies outlined here for convenience.
Summary:
- Chronic Fatigue Syndromes misdiagnosed
- The Lyme Hypothesis
- Treatments: Methylene Blue and Hydrogen Peroxide IV
- Herxing and Detox
Principle 1: Chronic Fatigue Syndromes Misdiagnosed
After my wife had gotten long-COVID, we met way more people with similar conditions that we ever thought. It's hidden in plain sight. It was definitely something you don't really care about until it affects you or a loved one. It's so unbelievably bad that no one wants to be a wet blanket talking about it, so unless it comes up, people keep it to themselves. When I was at Stanford, I did an independent study on Patient Experience for People with Long-COVID to understand the entire system as a whole with Dr. Mitchel Miglis, the leading autonomics and long-covid expert at Stanford.
Chronic fatigue is often diagnosed based on symptoms rather than a clear-cut biomarker, leading to overlap among conditions like Long-COVID, POTS, MCAS, and EDS. While each of these illnesses has distinct underlying mechanisms—EDS is genetic, POTS is autonomic, MCAS is immunological, and Long-COVID is post-viral—they all share fatigue as a major symptom.
Because of this, many patients find themselves diagnosed based on which “category” their symptoms best fit, rather than a precise cause. For example, EDS is a connective tissue disorder, but since it can cause dysautonomia, pain, and chronic exhaustion, some people primarily experience fatigue and receive an EDS diagnosis—even if connective tissue dysfunction isn’t the root issue. Similarly, POTS is diagnosed when a patient has tachycardia upon standing, but many with chronic fatigue may get this diagnosis simply because their nervous system is struggling.
Condition | Primary Cause | Key Symptoms |
|---|---|---|
Long-COVID | Post-viral | Fatigue, brain fog, cardiovascular issues, shortness of breath |
POTS (Postural Orthostatic Tachycardia Syndrome) | Autonomic nervous system dysfunction | Tachycardia upon standing, dizziness, fatigue, exercise intolerance |
MCAS (Mast Cell Activation Syndrome) | Mast cell overactivation | Allergic-like reactions, chronic inflammation, widespread pain |
EDS (Ehlers-Danlos Syndrome) | Genetic connective tissue disorder | Joint hypermobility, chronic pain, fatigue, tissue fragility |
This symptom-driven approach to diagnosis means that fatigue itself is often the common denominator, rather than the actual cause being fully understood. As a result, patients may cycle through multiple diagnoses, trying to find which label fits best. While these conditions are real and can be debilitating, the way they are diagnosed often reflects a pattern of medical categorization rather than a true understanding of the root cause let a lone a cure/treatment.
There are obviously correct diagnoses validated by genetic testing, but based on observation, logic, and common sense, I do believe that there is an epidemic of these diseases around the world and this misclassification issue is an absolute nightmare for patients and physicians. This has to be taken seriously as a fundamental principle.
Principle 2: The Lyme Connection
Through a family connection, former Johns Hopkins Neurosurgeon who was on the famous conjoined twins surgery, we were referred to Dr. William Vickers at Midatlantic Health Institute. They diagnosed my wife with Babesia (March 2024) and me with Lyme later (November 2024). After almost two years of talking to doctors and after my independent study at Stanford, this was not on my bingo card at all. This is also significant because Lyme can qualify someone for disability and is recognized.
When you speak with any sane educated person, their response to Lyme is eerily:
1) I know it comes from ticks
2) I don't want it
Same here for me. I have obviously heard of Lyme disease, but I actually had no idea what it was or actually what the symptoms were. I just knew it comes from ticks and it sucks.
Their hypothesis after long-COVID was that it may actually be Lyme 🤯. From observation they suspected that COVID may have weakened immune systems enough to let Lyme proliferate. The primary hypothesis that I heard from experts during my independent study at Stanford was that there was a lingering ghost virus that caused these symptoms.
What I didn't expect is that ghost virus was Lyme disease. The symptoms of long covid and some of these other misunderstood Chronic Fatigue Virus in Principle 1 match one for one with Lyme:
What the Hell is Lyme anyway?
Lyme is caused by Borrelia burgdorferi, a high-torque spirochete—a corkscrew-shaped bacterium that doesn’t just float around in your bloodstream like a typical infection. It drills into soft tissue, the heart, even the brain, setting off a massive inflammation bomb. That’s why you get:
• Neuropathy that fries your nerves
• Migraines that split your skull
• Tachycardia that makes your heart race like it’s running from something
• Fatigue that pins you to the floor
Lyme isn’t just a “tick disease.” It’s a stealth pathogen with an insane ability to burrow deep and evade the immune system.
Lyme is Probably Another Leaked Bioweapon
And then there’s this: Kris Newby, in Bitten (read here), argues Lyme might even be a bioweapon gone haywire—supposedly admitted by Willy Burgdorfer, the guy who discovered it.
Kris Newby
Diagnostics is a Dumpster Fire
Lyme is notoriously underdiagnosed—you usually won’t get tested unless you show up with a textbook bullseye rash. Meanwhile, long-haulers are being told they have some vague, post-viral syndrome, with zero effort to investigate what’s really happening.
Principle 3: Undervalued Treatments
Desperate to claw my way out, I turned to therapies most doctors hadn't thought of. They were still stuck on drugs, monoclonal antibodies or in some case just going vegan. At Midatlantic Health we received the following treatments. They aren't very complicated or expensive, but they are direct.
• Hydrogen Peroxide IVs
• Methylene blue IV
Treatment 1: Hydrogen Peroxide
When I first think of Hydrogen Peroxide, I think of wound treatments. Hydrogen peroxide is extremely cheap and widely available. My treatment for an IV was at a much lower dilution, but it is very effective against bacteria. It reacts with an enzyme within the bacteria and they just explode.
I discuss hydrogen peroxide first because there are places around the US that offer peroxide IVs for general benefits. They don't need a prescription are proven to be safe and can be found almost anywhere for those looking to try alternative solutions for their potential Lyme condition.
Treatment 2: Methylene Blue
Methylene blue, in particular, made a difference. I studied how it could be photo activated with red light to kill covid-19 cells in masks by a group at Stanford led by Nobel Prize Winner and Former Secretary of Energy, Dr. Stephen Chu. It turns out if you shine a red light on methylene blue it creates this thing called singlet oxygen which eviscerates bad cells around it. You can't even make this up.
At the end of my independent study at Stanford (Spring 2023), I identified it as a highly promising compound for the treatment of long-COVID patients. It matches near perfectly as a treatment and is on the WHO list of approved drugs. I literally have no clue how everyone missed this it's so obvious.
When I finally got it, it helped—lifting some of that fog and exhaustion. I was stunned it wasn’t part of early long COVID trials. Instead, most doctors were fixated on antivirals or monoclonal antibodies.
Word of caution: methylene blue can be lethal if mixed with SSRIs or antidepressants—something a lot of long-haulers are prescribed.
Principle 4: Herxing and Detox
And then there’s the Herxheimer reaction (explained here). When Lyme bacteria die, they dump endotoxins into your system. Your detox pathways get flooded, and suddenly, the treatment makes you feel worse before you feel better. That alone screamed bacterial infection—not just a lingering virus. For me, it as always worse 3-5 days after a treatment and takes a 3 weeks before I'm 90% there.
When my Vickers staff told me about the toxins, I thought about how massage therapists talk about toxins being released. I thought "ya sure, I guess I'll deal with your 'toxins'". I was totally wrong. Dead wrong.
The worst part of my recovery was when I stopped taking my activated charcoal, flushing with tons of water and hitting the sauna. I learned my lesson after a certain point and I am still doing that part. I could feel myself sweating and smelling the toxins out of my detox pathways. I totally undervalued this part of the recovery.
The limiting factor of the treatment isn't how much you can kill. It's actually how much die off and herxing your body can handle from each treatment. My wife's herxing wasn't terrible. Mine was awful. They actually thought I might've had lyme much longer. I personally think I've had a mild version of it for 9 years when I was 24 and that COVID let it run haywire when it suppressed my immune system.
Where I'm at Today
Today, I still am recovering from my last treatment a week and a half ago. I had treatments for almost three months, but can definitely tell the difference. I get flare ups when there is cold weather or I get sick that set me back, but I am optimistic that over time, I'll get to full recovery.
I'm not a doctor, but I did work on nuclear reactors to produce rare materials for cutting edge cancer therapies for my first startup that I founded. I also worked for and work with the largest Federally Funded Research and Development Center, Sandia National Laboratories, where I've learned how to run a process and tackle global technical missions.
I hope that my journey offers some insights into a rare, but growing problem from validating people's feelings as they know something is off to offering guidance on potential treatments and path forwards to recovery.