Post-treatment Lyme disease syndrome

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 post-treatment Lyme disease syndrome?

Post-treatment Lyme disease syndrome (PTLDS), also known as 'chronic Lyme disease', is characterized by persistent symptoms following presumed infection with borrelia burgdorferi. Symptoms may include fatigue, joint pain, or muscle aches along with headaches or difficulty thinking or concentrating.

Common symptoms reported by people with post-treatment Lyme disease syndrome

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.
Last updated:

Treatments taken by people with post-treatment Lyme disease syndrome

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

(Xanax)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)
Treatment name(s)

(Suboxone)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2) pain (1)
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Cannabidiol oil)
Type
Other
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

(Celebrex)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)
Type
Supplement
How many have tried
1

Data from patients with post-treatment Lyme disease syndrome, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with post-treatment Lyme disease syndrome

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

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

(Suboxone)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (2) pain (1)
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(BuSpar)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (1)
Treatment name(s)

(Cannabidiol oil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

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

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

(Klonopin)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with post-treatment Lyme disease syndrome, who reported starting treatments within the last 5 years.
Last updated:

Who has post-treatment Lyme disease syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 13
30s 22
40s 49
50s 77
60s 39
70+ 12
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 9
20-29 years 18
30-39 years 31
40-49 years 30
50-59 years 20
60-69 years 4
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 27
Female 186

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 191
Not Diagnosed 5

These charts show data from post-treatment Lyme disease syndrome patients who have completed their condition history
Last updated: