Lyme disease

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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
54
Tried for
Lyme disease (54) fatigue (1)
Treatment name(s)

(Rocephin)
Type
Prescription Drug
How many have tried
9
Tried for
Lyme disease (9)
Treatment name(s)

(Zithromax)
Type
Prescription Drug
How many have tried
8
Tried for
Lyme disease (8)
Treatment name(s)
Type
Supplement
How many have tried
6
Tried for
Lyme disease (6)
Treatment name(s)

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

(Neurontin)
Type
Prescription Drug
How many have tried
5
Tried for
Pain (4) Lyme disease (1)
Treatment name(s)

(Glutathione (IV))
Type
Supplement
How many have tried
5
Tried for
Lyme disease (5)
Treatment name(s)

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

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
5
Tried for
Lyme disease (3) fatigue (2)
1 more
Treatment name(s)

(Zoloft)
Type
Prescription Drug
How many have tried
5
Tried for
depressed mood (5)

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 (31 evaluations)
Side effects
nausea upset stomach 23 more
Total evaluations
33
Tried for
Lyme disease (54) fatigue (1)
Treatment name(s)

(Rocephin)
Perceived effectiveness
for Lyme disease (4 evaluations)
Side effects
elevated liver enzymes excessive daytime sleepiness (somnolence) 1 more
Total evaluations
4
Tried for
Lyme disease (9)
Treatment name(s)

(Zithromax)
Perceived effectiveness
for Lyme disease (5 evaluations)
Side effects
fatigue diarrhea 1 more
Total evaluations
5
Tried for
Lyme disease (8)
Treatment name(s)
Perceived effectiveness
for Lyme disease (1 evaluation)
Side effects
Total evaluations
1
Tried for
Lyme disease (6)
Treatment name(s)

(Biaxin)
Perceived effectiveness
for Lyme disease (3 evaluations)
Side effects
aftertaste Jarisch-Herxeimer reaction
Total evaluations
3
Tried for
Lyme disease (5)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (3 evaluations)
Side effects
sleepiness
Total evaluations
4
Tried for
Pain (4) Lyme disease (1)
Treatment name(s)

(Glutathione (IV))
Perceived effectiveness
for Lyme disease (2 evaluations)
Side effects
dizziness and feeling faint fatigue
Total evaluations
2
Tried for
Lyme disease (5)
Treatment name(s)

(Minocin)
Perceived effectiveness
for Lyme disease (3 evaluations)
Side effects
hyperpigmentation (skin darkening) joint pain 1 more
Total evaluations
3
Tried for
Lyme disease (5)
Treatment name(s)

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
2
Tried for
Lyme disease (3) fatigue (2)
1 more
Treatment name(s)

(Zoloft)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
heightened agitation nausea 1 more
Total evaluations
3
Tried for
depressed mood (5)
  • 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?


Age
Age Proportion # of patients
<20 18
20s 104
30s 191
40s 308
50s 357
60s 214
70+ 57
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 126
20-29 years 120
30-39 years 155
40-49 years 131
50-59 years 76
60-69 years 16
70+ years 1

Sex

Distribution of sex

81% Female
19% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 697
Not Diagnosed 75

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