When Lyme Disease Mimics a Brain Tumor in Children
Lyme disease can mimic a brain tumor when it presents as increased intracranial pressure, leading to delayed diagnosis if not considered early.
This case highlights how neuroborreliosis can present with alarming neurologic symptoms—even when imaging appears normal.
A Concerning Presentation: Headache and Papilledema
A 9-year-old boy presented with:
- Daily pulsatile frontotemporal headaches
- Photophobia and phonophobia
- Pallor
Neurologic exam revealed papilledema, indicating increased intracranial pressure.
Brain imaging was normal.
This combination raised concern for pseudotumor cerebri, a condition that can resemble a brain tumor clinically.
Initial Workup Missed Lyme Disease
Extensive testing ruled out common infectious causes, including viral and bacterial pathogens.
The child was treated with acetazolamide to reduce intracranial pressure.
At this stage, Lyme disease had not yet been considered.
The Diagnosis: Lyme Neuroborreliosis
Further testing revealed positive Lyme serology.
The diagnosis of Lyme neuroborreliosis was made, and the child was treated with a 21-day course of intravenous ceftriaxone.
He made a complete recovery.
Why This Matters: Lyme Disease as a Neurologic Mimic
Pseudotumor cerebri can be caused by a wide range of conditions, including:
- Infections
- Venous sinus thrombosis
- Endocrine disorders
- Medications
Lyme disease is often overlooked in this differential—especially without a rash or known tick bite.
Key Clinical Lessons
- Pseudotumor cerebri can be the sole manifestation of Lyme disease
- Tick bite and rash may be absent
- Neuroborreliosis can occur with normal brain imaging
- Lyme disease should be considered even in non-endemic regions
Clinical Takeaway
In children presenting with headache and papilledema, Lyme disease should be part of the differential diagnosis—even when imaging is normal and classic Lyme features are absent.
Early recognition can prevent unnecessary testing, reduce diagnostic delays, and lead to complete recovery with appropriate antibiotic therapy.
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
I an adult female was diagnosed with Lyme disease about six years ago, and have a persistent daily headache/feeling like brain is swollen/ intracranial pressure, as well as vision loss. Localized nerve blocs helped the head pain (but one can only do these sparingly) and about 9 months of intramuscular Bicillin injections helped mitigate (but not eliminate) some of the more debilitating other Lyme symptoms, like migrating joint pain, stiff neck, inability to retrieve common words (loss of cognition for a time). In your experience, is there evidence that Lyme affects the occipital nerve?
You are not alone. There are a number of Lyme disease patients with pain in the occipital area. It sounds as if antibiotics and blocs have helped but not eliminated your pain.
Same symptoms here! I was diagnosed with Lyme disease but my headaches are just terrible I need to stay in bed at least 3 days. It seems like I will have it for the rest of my life. 🙁
It can be discouraging. Keep working on finding an answer.
Doctor, last year I had a brain/pituitary MRI with contrast and the report said I had a 3mm pituitary adenoma. After traveling to top
endocrine center, USC , Cedars Sinai , UCLA and St Johns Provident I received all differing opinions from the Drs. and Neurosurgeon Drs..
The first 2 said it was a RAnthkes Cleft cyst, UCLA Neurosurgeon said there were no characteristics to lead him to believe it was either an adenoma or cyst. St. John Neurosurgeon said it was nothing and should be re tested each year for growth. I was just diagnosed with Lyme disease and Im wondering is this 3 mm dark circle a false tumor of some sort??
I will often find something during my Lyme disease evaluation. I ask my consultants to evaluate each finding. I am not sure the lesion you described is related. I hope treatment for Lyme disease helps,
Dr. Cameron,
Last year my 10 year old daughter was on our 65 acres of land in Georgia and got multiple nympth tick bites, rash and 6 weeks later full blown symptoms. We went to an ILADS director ..Barnwell, who did 9 months of cefdinir and azithromycin, She wanted to use mepron as well to cover babesia but my husband and I thought that was too much on her so we skipped the mepron.SHe stopped the cef/azith 4 months ago and since then is getting a progression of daily headaches..usually in the afternoon and top of head with eye pain. Mri was clear as well as eye exam.Infectious Dr we went to said there is No Lyme in Ga!! the other night she got a 101 fever and flu symptoms which left the next morning. We moved from Ga 4 months ago to escape the tick epidemic and are on the gulf coast.. wth no drs here to help us. SIerra also developed scoliosis 6 months ago.. what of her symptoms could be lyme or co infections and what does it sound like she has??
I am sorry to hear your daughter remains ill. Your story reflects the difficulties finding an answer. It remains important to see differing specialists until you find an answer.
I’m having much difficulty finding a doctor that will even test me for lyme and/or coinfections. I have all the symptoms and I am becoming quite debilitated. I have spent a lot of time outdoors my entire life and have always been around a lot of animals. About 4 years ago, I was walking through the woods with my boyfriend when suddenly I noticed my boyfriend was covered in tiny ticks I looked down and they were all over me too! We must’ve walked through a nest or something. It was awful. We brushed them off as fast as we could and we didn’t notice that any had latched on but I starting developing symptoms shortly after. More recently, I’ve been having pain in the occipital region on the right side and extreme fatigue. I’m a nursing student with not the greatest insurance and not a lot of money to fund treatment that’s not covered. I’m getting very discouraged and finding it difficult to meet even the most basic of life’s demands lately. I don’t know what to do anymore. I’m really scared.
I’m so desperate, that I’m about to buy and take animal doxycycline. I know this is probably not the best idea but I’m at a loss here and I need to be able to function obviously. Ugh!
Thanks for this information.
This is a pretty fantastic article. My story can be found here:
https://www.hormonesmatter.com/vasectomy-intracranial-hypertension-vision-balance-disturbances/
The punch line that isn’t included in the story is I was just diagnosed with Lyme disease a few months ago (rickettsia, ehrlichiosis, and babesia). Like the article, my intracranial pressure has been high since the beginning. I’m anxious to see how the headaches and pressure respond to treatment. Medicine needs more awareness with Lyme. It took 137 doctors before someone finally thought to look at a larger tick panel. Amazing.
I just read your article. Wish I had seen it sooner. I’ve been suffering constant headpain 13 yrs. Lyme and Babesia Positive. IIH has just entered my radar in the last couple of weeks. I’m waiting to get evaluated. Primary doc agrees I probably have it but didn’t know what to do with me. We’re kinda on our own out here trying to find answers and it’s awful. I’ve was diagnosed Lyme in 1990. I hope you are doing better, what a story! Too many of us suffering needlessly. Thank you Dr. Cameron for your article, wish I had seen it earlier too.
I hope you find treatment helpful.
Thank you all and especially you , Dr . Cameron for being empathetic and encouraging for us chronic Lyme sufferers,. As a registered nurse for 25 years in icu , and having been through the horrific Lyme symptoms, and having to fight and advocate for my own diagnosis and treatment you bring comfort and strength to myself and many going through a disease where people don’t understand or don’t believe you . I often get “well you don’t look sick “. Very horrible to be not validated .
Thank you again
Dr Cameron
I’ve had Lyme for 12 yrs…..still treating with a variety of herbs and disulfuram. My head pressure will feel horrible when I laugh or cough or am short of breath. I also have visual disturbances, occasionally. Do you recommend that I rule out a brain tumour?
Certainly.
Hello Dr. Cameron…after having lyme disease symptoms for 23 years and having done the elisa and western blot tests TWICE…all showing negative. I know that this is not unusual to show negative test results after having lyme for decades..but what would you suggest to my doctor on getting other tests done? Cerebral spinal fluid tested? The intravenous ceftriazone might just be a solution for me like the boy in your article…as I too have head pressure with numerous other symptoms. But unless I can PROVE I have lyme disease..I will not be able to get that treatment. Thank you Gene
The labs can be disappointing. Nine out of ten individuals with chronic neurologic Lyme disease have a negative test. Your doctor will have to take a clinical judgement. You will also need to rule out other causes.
Hello Dr. Cameron,
Was diagnosed with Lyme in Nov 2021 by Lyme panel and western blot under went antibiotic treatment thought I was getting better after 4 months starting having horrible insomnia, blurred vision ,night sweats , digestive problems, abdomen pain ,groin pain , terible anxiety ,80lbs of unintentional weight loss, went for tons of test labs , weird thing pop up but dismisses from my Drs.and hospital Got a endocanoligst he finds cortisol high,a cth. High
R enin high andosterone low,testosterone low
Did 24hr creatinine high ,cortisol 4x high value now scheduled for MRI next week for possible pituitary tumor ! My infectious disease Dr claims I’ve had enough antibiotics !! Says these are not symtoms of a continuous Lyme infection ..
Can Lyme cause an increase in cortisol ?
How does it effect the endocrine system ?
Been suffering horribly can’t function wired 24 hours a day losing muscle mass and strength !!
Thanks,
James
I have not typically seen high cortisol levels in my patients. But I am not an endocrinologist. I lean on endocrinologist to rule out other illnesses.
I just stumbled across this, Curious where to find help. i had an astrocytoma removed at mayo 7 years ago, 90% resected, now, i have a 5cm x 5cm brain cyst in same lobe and new tumor (maybe astrocytoma again). Im thinking there may be a link to lyme considering symptoms, cfs nose drip, ctreme head pressure, complete scalp an facial an oral, eye socket numbness and went thru stage 1/2 lyme symptoms but never was tested, now it all might make sense!
I’m willing to fly in to office @ NY for a exam! ????
Thx for any thoughts doc
I typically advise my patients to follow-up their neurologis if the symptoms appear related to the astrocytoma and surgery. I have had patients who have Lyme disease along with their cancer that have benefited from treatment for Lyme disease.
My husband has just gone through an intensive antibiotic treatment for chronic Lyme (confirmed by Igenix and C6 and antibody testing) as he was infected about 23 years ago. His fatigue and mental cognition appear to be improved but his major symptoms of diplopia & vertigo remain. Do you think this could be secondary to lyme causing a pseudo tumor cerebri? His brain mris in the past show no evidence of tumor but do have some areas of heightened lucency. We are unsure of what steps to take next. Thank you
I have found it can be just as difficult diagnosing pseudo tumor cerebri as Lyme disease for some of my patients. I have asked specialists to weigh in while I follow my patient. I have some patients who appeared to have an unresolved tick borne infection that was the cause of the symptoms.
Excellent article. I have wondered if there might be a link, in some cases, between lyme and IHSS.
My father had IHSS with unknown cause. I have a Igenex positive lyme test, with constant head pressure, 2 episodes of loss of vision in one eye, chronic balance problems. How do I proceed with diagnosis?
My Lyme disease patients often grant that their headache is more of a pressure. I advise my patients to consult a doctor familiar with Lyme disease in addition to their neurologist.