Lyme disease

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is Lyme disease?

Lyme Disease is caused by Borrelia burgdorferi. Early manifestations of infection may include fever, headache, fatigue, depression, and a characteristic skin rash called erythema migrans. Left untreated, late manifestations involving the joints, heart, and nervous system can occur.

Common symptoms reported by people with Lyme disease

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with Lyme disease

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Doxylin)
Type
Prescription Drug
How many have tried
26
Tried for
Lyme disease (26) fatigue (1)
Treatment name(s)

(Cannabidiol CBD oil)
Type
Other
How many have tried
7
Tried for
anxious mood (6) pain (3)
3 more
Treatment name(s)

(Rocephin)
Type
Prescription Drug
How many have tried
5
Tried for
Lyme disease (5)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
4
Tried for
depressed mood (3) anxious mood (2)
Treatment name(s)

(Mobility scooter)
Type
Equipment
How many have tried
4
Tried for
fatigue (4)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
4
Tried for
fatigue (2) Lyme disease (2)
1 more
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
3
Tried for
anxious mood (3)
Treatment name(s)

(Marijuana)
Type
Other
How many have tried
3
Tried for
pain (3) stress (1)
Treatment name(s)

(FeraMAX)
Type
Supplement
How many have tried
3
Tried for
fatigue (3)
Treatment name(s)

(Zoloft)
Type
Prescription Drug
How many have tried
3
Tried for
depressed mood (3)

Data from patients with Lyme disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with Lyme disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Doxylin)
Perceived effectiveness
for Lyme disease (13 evaluations)
Side effects
nausea upset stomach 8 more
Total evaluations
13
Tried for
Lyme disease (26) fatigue (1)
Treatment name(s)

(Cannabidiol CBD oil)
Perceived effectiveness
for anxious mood (6 evaluations)
Side effects
Total evaluations
7
Tried for
anxious mood (6) pain (3)
3 more
Treatment name(s)

(Rocephin)
Perceived effectiveness
for Lyme disease (4 evaluations)
Side effects
excessive daytime sleepiness (somnolence)
Total evaluations
4
Tried for
Lyme disease (5)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
excessive daytime sleepiness (somnolence) worsening depression
Total evaluations
3
Tried for
depressed mood (3) anxious mood (2)
Treatment name(s)

(Mobility scooter)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
1
Tried for
fatigue (4)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
constipation
Total evaluations
2
Tried for
fatigue (2) Lyme disease (2)
1 more
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
constipation
Total evaluations
2
Tried for
anxious mood (3)
Treatment name(s)

(Marijuana)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (3) stress (1)
Treatment name(s)

(FeraMAX)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
1
Tried for
fatigue (3)
Treatment name(s)

(Zoloft)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
nausea
Total evaluations
2
Tried for
depressed mood (3)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Lyme disease, who reported starting treatments within the last 5 years.
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Who has Lyme disease on PatientsLikeMe?

  • 8 new patients joined this month
  • 1210 say Lyme disease is their primary condition

Age
Age Proportion # of patients
<20 15
20s 131
30s 258
40s 346
50s 464
60s 310
70+ 118
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 138
20-29 years 130
30-39 years 160
40-49 years 139
50-59 years 82
60-69 years 20
70+ years 4

Distribution of sex

Sex
Sex Proportion # of patients
Male 333
Female 1344

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 758
Not Diagnosed 85

These charts show data from Lyme disease patients who have completed their condition history
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