Lyme Encephalopathy Symptoms: Why Patients Should Be Warned
Lyme encephalopathy symptoms—including memory loss and cognitive impairment—are well documented in the medical literature. Yet some clinicians continue to question whether this condition exists, raising concerns about patient awareness and diagnosis. :contentReference[oaicite:0]{index=0}
A review by Wormser and colleagues stated that they had “never seen the poorly defined entity referred to as Lyme encephalopathy” and questioned its existence.
“We have also never seen Lyme encephalopathy… and suggest that these entities are either very rare or nonexistent.”
Evidence Supporting Lyme Encephalopathy
Lyme encephalopathy has been described in the medical literature for decades.
Logigian and colleagues reported that 24 of 27 patients with chronic Lyme disease developed a mild encephalopathy characterized by memory loss, mood changes, and sleep disturbances. [2]
Additional symptoms included fatigue, headaches, irritability, depression, and difficulty finding words.
Lyme encephalopathy predominantly affects memory and concentration.
The same research group also described diffuse axonal peripheral neuropathy in these patients, supported by electrophysiologic testing and nerve biopsy findings. [2]
Subsequent studies—including those by Fallon and others—have continued to document cognitive impairment and neurologic dysfunction in Lyme disease. [4,5]
Persistent Symptoms After Treatment
Even after antibiotic treatment, many patients continue to experience symptoms.
In one study, patients reported improvement after intravenous ceftriaxone, but full recovery was uncommon. [3]
Long-term follow-up studies found that 34% to 62% of patients experience persistent symptoms, including neurocognitive impairment, years after treatment. [8,9]
Aucott and colleagues reported that new or persistent symptoms often emerge after initial treatment. At six months, 36% of patients reported fatigue, 20% widespread pain, and 45% neurocognitive difficulties. [10]
Broader Impact of Lyme Disease Complications
Lyme disease can lead to a wide range of complications, including neuropsychiatric symptoms, peripheral neuropathy, POTS, uveitis, and post-treatment Lyme disease syndrome (PTLDS).
Many patients report poor quality of life and functional impairment years after treatment.
Why Patients Should Be Warned
The discrepancy between clinical experience and published claims raises important concerns.
Patients should be warned that Lyme disease may lead to long-term complications, including cognitive impairment, even after early treatment.
Awareness allows patients and clinicians to recognize symptoms early and pursue appropriate evaluation and care.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
My health has been failing since August 2013. Four months after a deer tick was dug out of the back of my neck. I have have had my thyroid removed due to tumors. Two parathyroid glands removed. I have seizures but the neurologist says he doesn’t know why. I feel my brain is being squeezed. My eyesight is getting worse. Brain fog, word find, memory loss, muscle pain and loss, bones hurt, I could go on. I had a Dr tell me I have Lyme disease and it’s wreaking havock on my immune system but he said I don’t know what to tell you…Go to New York. I’m a disabled 43 year old single mother of a ten year old that feels like I am a lot older some days. I live in Westford MA. Not one Dr will help me here. I have had positive ANA’S. My therapist thinks I have encephalitis.
It sounds as if different doctors are weighing in on your illness. It is often easier to find a doctor to look for other diseases but not for Lyme disease. Keep working on getting better.
My husband has a neuropathy from Lyme that affects his running gait so much that he cannot run any longer causing him great disappointment. I’ve been searching online for someone who might be able to offer hope for a treatment that might improve his gait. Can peripheral neuropathy from Lyme be treated or improved or reversed? He now tests negative for Lyme (after extended antibiotic treatment) after once testing positive. He never had the bullseye rash.
There are patients with Lyme disease with peripheral neuropathy who have improved. It can be difficult to know how far to go with Lyme disease and when to pursue other treatments.
I was diagnosed with Anaplasmosis and Lyme’s back in April. I never had the target and never saw the tick. I was diagnosed by symptoms and blood work. Anaplasmosis was confirmed first and Itook antibiotics for it. One Lyme’s was confirmed, I completed a round of antibiotics for it. The infectious disease doctor I saw at one of the best hospitals in Boston has assured me that the best evidence shows no chronic issues with Lyme’s treated in the primary stage. My ongoing symptoms include morning back pain, off and on neuropathy in the toes on my right foot (never had until Lyme’s), and the brain fog and increased challenge recalling words and names.
At least a third of patients treated early remain ill in published studies by leading medical centers.
Was diagnosed with autoimmune encephalitis with all autoimmune antibodies coming back negative. Symptoms of cognitive decline, muscle.twitches. behavior changes, catatonia and more, new mild atrophy on MRI after immune therapy was given. 25 years old avid outdoorsman and flea and tick exposure. Positive IGeneX. 4 out of 5 bands positive on labCorp.
Is it possible to have Lyme encephalitis misdiagnosed as autoimmune?
Many of the Lyme disease manifestations mimic autoimmune conditions. It can be challenging for the doctor to determine who has an autoimmune condition or tick borne illness.
What is the treatment for encephalopathy that accompanies Lyme disease? My daughter is having trouble doing her schoolwork after contracting Lyme disease this summer. She has taken doxycycline hclate 100 mg, twice a day for about one week now. Should we expect improvement over the next week?
There are different definitions of encephalopathy. Many children have problems with school work. It is likely too soon to tell. You could consider a neurologist to rule out other illnesses.
My 18 yr old daughter had 2 bulls eye rashes in 2013. Lab results 1 positive band & 1 indeterminate on Igenex IGG & IGM. Low CD57- Positive mycoplasma pneumonia Armin Labs. Has current Bartonella rash for 3 years. Got sudden onset OCD 2014 recovered almost completely in 2 months. April 2015 sudden onset OCD(extreme) with memory loss vomiting extreme anxiety (screaming). She has dizziness, no balance (trouble walking) light sound sensitivity, blurred vision. Trouble speaking (nonsense words phrases) Bladder and colon spasms (incontinent) Now tics (blowing, nonsense words she can’t stop) Extreme head pressure.She has been on oral antibiotics for 20 months doxycycline & minocycline. No doctor in Alberta will treat her. I am trying to find a neurologist , but the first one we went to said there was nothing wrong with her! We are extremely worried but she is too ill to travel to the US. Does this sound like autoimmune encephalitis PANS , or Lyme encephalitis?
Your daughter can by challenging to the medical system. There are cases of tick borne illness and PANS that can be that sick. Perhaps there is a treatment that has been overlooked. It is also important to rule out other illnesses.
My sister has major issues with encephalopathy. It’s gotten to the point where I don’t know what course of treatment to pursue because nothing seems to work, and she has major inflammation issues which manifest cognitive deficits and memory challenges (severe) along with motor dysfunction and mood shifts with the inflammation. She’s done antibiotics, herbals, supplements, but now just seems to get inflamed. I guess I’m writing in the hope that maybe you have a suggestion. She has worked with Horowitz’s peer Dr. Raxlen along with neurologists and a local llmd. I just don’t know what to do. She seems to get worse when we treat and worse when we don’t.
Thanks for sharing how challenging it can be. I would imagine you have also seen specialists to rule out other illnesses without an answer.
Do you guys have any personal experience of treating someone with Lyme that has gone to their eyes? My mother in law was diagnosed with Lyme in her eyes. We can’t find any information on it in eyes anywhere
There are some eye findings in patients with tick borne illnesses. I blogged on a review article https://danielcameronmd.com/eye-problems-tick-borne-diseases-lyme/ and https://danielcameronmd.com/growing-list-eye-problems-lyme-disease/
It is also important to rule out other common eye problems.
Yes, we have been to a number of neurologists, endocrinologists, lyme literate doctors and herbal specialists. She doesn’t have anything in the ALS, MS area. Her PET Scan was very abnormal, but that’s all we have to go on outside the positives on the different tick-borne infections. As far as auto-immune encephalitis, which we have been looking into, we’re looking for encephalitis of unknown/unspecified origin or anti-NMDA. I have been told that they are discovering new receptors like this, so ruling out just anti-NMDA would not remove the possibility of something auto-immune. Still, as we treat anything that is Lyme, Bartonella and Babesia specific, she has these neurological flares. And she’s had new symptoms after going after some of these infections. Just struggling to figure out what to do? Do you have any suggestions?
You have described the complexity of your illness despite comprehensive evaluations. I can’t help without an examination and even then it be difficult to determine the next step.
That makes sense. Perhaps we can make it up to New York for this in the future. Thank you, Dr. Cameron.
It’s unfortunate that doctors do not look at Lyme. They just don’t. I have taken my son to every top hospital in the U.S in the past 10 years and was told he had arthritis and UC. 2 muscle biopsies to find out why he couldn’t stand and so many tests. He has also had so many other diagnosis’s. Drs thought I was overprotective and my son was “functional”. Only when my son started having seizures and severe tremors and a positive Babinski sign did a doctor become concerned. But after an initial MS work up the doctor was concerned but couldn’t help. I took it a step further and had a SPECT scan done which showed that he had a traumatic Brain Injury. They said he looked like he went to war but a consult with a SPECT specialist said His scan looked viral throughout with hypoprofusion on the left. He looked like an 80 year old dementia patient. He recommended a dr who diagnosed him in 2 days. Had Lyme testing done by Lyme lab and showed positive for Babesia and indeterminate for Borrelia and positive for HHV6. It’s sad that we had these tests done before and nothing came up. cDC called me asking where he got Borrelia because it just didn’t show itself in Florida only in North east. Last time we were in Maryland was when he was 2 at a BBQ with so much deer in the area. He’s almost 18. It would explain a lot of the problems he was having at that time only to come out full blown after he had the flu when he was 8. I’m thankful we have him on medication but we all wonder if he will get better and if his brain will heal.
Hello, Dr. I’m wondering if oral doxycycline is appropriate to treat Lyme encephalitis with? We live in southeastern Pa near West Chester. My 10 year old daughter has had Lyme at least twice, now it seems a third time. First two times she had fever, headache, and multiple erythema migrans rashes- she was treated with 2 weeks amoxicillin the first time (2016), 3 weeks amoxicillin the second time ( fall 2017). One year later she began complaining of extreme fatigue, muscle soreness, dizziness, difficulty remembering things/concentrating, and occasionally fell to one side while walking, symptoms that were vague enough and slowly worsened so that I did not see doctor until March 2019. Dr. ran the standard CDC recommended 2 tier Lyme testing and said it lit up like a Christmas tree. He said because her IgM titers were very high along with IgGs that he thought it was a new case of Lyme vs continuation of old. He is treating her with oral Doxycycline 100mg 2x/day (she is 25 kg) for 4 weeks. She is at 2 weeks and has some improvement in the dizziness (80%) and fatigue (30%) and brain fog (60%), but her muscle soreness (all over body) is actually worse. I am hoping she will show more drastic improvement after 2 more weeks, but am concerned that she is not getting IV Ceftriaxone treatment when guidelines say that is first-line for encephalitis- seems that she is getting the treatment for the more standard arthritic picture of Lyme. On the other hand, some small studies show oral doxy to have efficacy for CNS symptoms as it does penetrate blood-brain barrier and saw it listed as a second line treatment on some British guidelines. What is your opinion? My doctor said if she doesn’t improve to send her to a rheumatologist and was scornful of idea of IV meds, saying “there is no evidence long term IV treatment helps Lyme patients” and if doxy doesn’t help, maybe it is rheumatological. A.I. Dupont children’s hospital website near me states flatly that there is no evidence of Chronic Lyme disease, so I am at a loss as to what to do next if she doesn’t fully respond after 2 more weeks of antibiotics. She does not present to others as terribly sick, as she is quite a trooper and will push herself through the school day, but collapses upon getting home and is unable to participate in her old activities. She used to love to run like the wind across the golf course and now lays on the couch asking me to massage her sore muscles and didn’t even want to get up on Christmas morning to see what Santa brought.
Hello, Dr. I just sent a message regarding my 10 year old daughter with Lyme. I forgot to mention a couple other symptoms- sometimes she would fall to one side when walking, saying “it feels like one side of my body is heavier than the other”. Also has insomnia (falls asleep ok, but wakes up for hours during night) and irritability. Since starting the doxycycline, she has also had some urinary incontinence (twice during the day she has peed her pants and once at night) – side effect of doxy or part of Lyme?
I have to evaluate each symptom to rule out another condition.
Your doctor are taking only on view of the evidence. You should seek a second opinion and make sure you she does not suffer from another illness.
hola , tengo un niño de 15 años que presenta muchos síntomas que nos hace pensar que podría tener alguna enfermedad viral o transmitida por garrapatas, alguno de los síntomas son: mucha fatiga, duerme mucho en destiempo, ansiedad , por la noche no puede dormir, dolos muscular y de espalda, perdida de peso, nauseas, cambios de humor, conductas agresivas, dolor de estomago, se le comienza a caer el cabello. el niño se ha expuesto a estar cerca de perros en una ocasión nos infestamos de garrapatas, pulgas y nos picaron, es amante de los gatos también suela agarrarlos mucho , besarlos y tenemos problemas con sus pelos del gato. el niño se esta tratando con una psicóloga por su conducta pero que también tiene la especialidad a checar y dar terapias neurológicas y ella nos a dicho que trae muchos síntomas de Encefalitis viral. estoy muy preocupada por mi hijo y me he puesto a investigar . mi pregunta es ¿Qué estudios de laboratorio le puede hacer para saber si es viral o qué es lo que tiene?, ¿Qué estudios neurológicos?
Per Google translation – Hello, I have a 15-year-old boy who has many symptoms that make us think that he could have some viral or tick-borne disease, some of the symptoms are: a lot of fatigue, he sleeps a lot at the wrong time, anxiety, he can’t sleep at night, muscle and back pain, weight loss, nausea, mood swings, aggressive behavior, stomach pain, hair loss. the boy has been exposed to being around dogs on one occasion we were infested with ticks, fleas and they bit us, he is a cat lover, he also usually grabs them a lot, kisses them and we have problems with his cat hairs. The boy is being treated with a psychologist for his behavior but who also has the specialty of checking and giving neurological therapies and she has told us that he has many symptoms of viral encephalitis. I am very worried about my son and I have begun to investigate. My question is, what laboratory studies can you do to find out if it is viral or what is it? What neurological studies?
I have patients in my practice with similar symptoms. I have had to rely on other specialists including neurologists to rule out other causes. I advise my patients to work with a doctor familiar with Lyme and tick borne diseases to determine what tests are appropriate.