My Experience with Lyme Disease—An Anonymous Account

As someone who contracted Lyme disease in late 2020 while living in Pennsylvania, USA, I faced a delayed diagnosis due to the overwhelming impact of the COVID-19 pandemic on the healthcare system. I was 30 years old at the time, and by the time doctors recognized the infection in early 2021, it had progressed beyond the initial stages. The standard 21-day course of doxycycline proved ineffective for me—a challenge made more frustrating by the medical community’s general stance that Lyme cannot persist beyond that treatment.

As an engineer by profession with no medical background, I had to take charge of my own recovery. What follows is the treatment plan I followed between mid-2021 and late 2022, developed through careful research from medical literature and experimental methods that had not yet been widely adopted or clinically tested.

Warning

• Sample size of 1
  
• Not lab tested
  
• Not written by a doctor
  
• Comes with potential damage to the body due to long course of antibiotics
  
• Not recommended to follow—everything shared here should be observed as the notes of a well-meaning but potentially insane neighbor

Working Combo

1. Dapsone 100 mg once daily for 1.5 years

• Start the course at 50 mg daily for approximately 2 weeks (or once initial side effects subside), then advance to the full dosage.
  
• A pill cutter is recommended to split 100 mg pills.
  
• Initial side effects include phantosmia of mothballs and shortness of breath. Both subside once the body adjusts.
  

2. Folate supplement once daily, 400 mcg for 1.5 years

3. Supportive supplements for 2 years (including 6 months after Dapsone/Folate cessation)

• Milk thistle
  
• NAC (N-acetylcysteine)
  
• Turmeric
  
• Cranberry supplement
  
• Probiotics

Lifestyle Recommendations

• Increase water intake throughout treatment
  
• Ideally, stop alcohol consumption
  
• Avoid heavy meals that burden the kidneys, liver, pancreas, and gallbladder

Working Principle

1. Dapsone is a sulfonamide antibiotic that halts bacterial folate synthesis.

Lyme bacteria’s shape-shifting and hibernating biofilm nature makes it resistant to most antibiotics. A long Dapsone course prevents bacterial reproduction by depleting its ability to synthesize folate. Lyme bacteria cannot absorb folate from the host, only what it synthesizes. Over time, spirochete and biofilm forms of Lyme will revert to their active round-body state and die from folate deprivation. The immune system then clears the remaining infection.

2. Folate supplementation is essential to support the human body while taking Dapsone, as the human body loses its ability to synthesize folate during the treatment.

Post-Therapy Follow-Ups

1. Continue folate temporarily

• Folate is gentle on the body and can be taken for a few weeks post-treatment.
  
• If shortness of breath recurs, use folate on demand.

2. Take cytokine suppressor for 30 days

• There may be an immune system overreaction upon ending Dapsone.
  
• Symptoms can resemble the original Lyme response—don’t panic.
  
• Take suppressor for 30 days, then keep a supply for on-demand use in the coming months.
• If inflammation occurs after 30 days, use suppressor on-demand.

3. Restore gut health

After prolonged antibiotics, gut flora will be compromised. Work with a healthcare provider to rebuild balance through diet, supplements, or probiotics.

4. Prevent reinfection

• Avoid tall grass
  
• Reconsider allowing pets on beds
  
• Learn to identify early signs of Lyme
  
• If in doubt, start a 21-day Doxycycline course early

The best way to deal with Lyme is never to get it. The second best is catching it early.