Lyme and Seizures


Seizures seem to be a common topic among the Lyme community. Many people only think of grand mal seizures, but there are many different kinds that may surprise you.


What is a seizure? A seizure can be defined as changes in the brain’s electrical activity. This can sometimes cause no symptoms at all, or cause very noticeable and dramatic symptoms.


What causes seizures to occur? Seizures can occur for many reasons. Some being brain infections, encephalopathies, abnormal levels of things like glucose or sodium in the blood, heat intolerance, metabolic and chemical changes, head trauma, heart disease, drug interactions or substance abuse, high fevers, heavy toxicity, to name a few. Sometimes, there are no particular reason for a seizure to occur that can be found. Fortunately, up to 70% of people whom have had a seizure it is an isolated event.


Some people have the ability to tell if they are about to have a seizure. It is believed this might  actually be a simple partial seizure, beginning in the temporal lobe part of the brain. This is called an aura. Fear, anxiety, vertigo, stomach issues, and visual symptoms such as spots can indicate that you are about to have a seizure, for example. I feel an element of anxiety like I know something bad is about to happen before I have some of my worst seizures. In some cases, a patient will repeat a word of phrase, laugh, scream, cry, or even do embarrassing things like undress or dangerously walk out into traffic. I am willing to bet if you are someone who has seizures, you might have your own tell-tale sign that you know something is “off”.


How does this relate to Lyme disease? I always wondered why seizures began for me when I started treatment. I might have had some issues in the past, now thinking about it since I passed out a lot, even for just a second, which I will explain a type of seizure I like to call the “limp noodle” seizure. There are a few different reasons that can be explained when a patient has Lyme disease. Infections in general can attribute to having seizures. Another reason for having seizures is toxicity. When the brain is full of “die off”, it can change the way your brains electrical activity would normally work. Just another reason to detox!🙂


Encephalitis, which means brain swelling, can be common among Lyme patients and generally more often than not causes partial seizures as it generally does not effect your entire brain, but rather one side of the brain. Another reason is encephalopathy, which means a disorder, disease, or malfunction of the brain. Just as the Borrelia bacteria can effect your joints and muscles, it can also cause a lot of neurological manifestations. Co-infections are an important thing to consider if you are suffering from seizures. Up to 50% of Lyme patients that have encephalopathy have Bartonella, which is known for its neurological manifestations.


It has been shown that with congenital Lyme cases, it is far more likely for the patient to suffer from having seizures.


Seizure types are broken down into two different groups, generalized and partial. Generalized seizures begin with a widespread electrical discharge that involves btw sides of the brain at once. In most instances, those who have a generalized seizure will not remember the event. Partial seizures on the other hand, are limited to one area of the brain. Partial seizures can be broken down even further, based off of if a person is aware, being able to remember and respond while having a seizure, versus having no recollection of the event.


Here are the seizure types that are are broken down with a description for you all.


Generalized seizures:


Absence seizures/Atypical absence seizures –

Absence seizures are a brief loss of consciousness. I would describe it as “losing time”. Another name for this type of seizure is petit mal. Most people who have had absence seizures have no awareness or responsiveness when this occurs. With an absence seizure, many around them, they might not be aware they are having a seizure either, as it can appear the person is simply “spacing out”. It might be more noticeable with an atypical absence seizure as there are changes in muscle activity, such as blinking, hand movements, or contraction or relaxation of the muscles. These seizures only last about 10 seconds, but it is not uncommon for one to have a spell of 50 or more. With 50 or more in a row, that is an easy way to be a vegetable for part of your afternoon.


Myoclonic seizures –

Myoclonic seizures are classified by sporadic jerking movements. These are perhaps the easiest types of seizures for your neurologist or doctor to come up with a diagnosis. The jerking is caused by an increased muscle tone. These type of seizures are usually accompanied by other types of seizures.



Atonic seizures –

Atonic seizures are the “limp noodle seizures” I was mentioning earlier, also known as a drop seizure . It is a brief loss of muscle tone. One generally will fall right to the floor if they are having an atonic seizure. They only last about 15 seconds, and the person generally will remain conscious.


Tonic seizures – These are what I like to call “mummy seizures”. Generally lasting about 20 seconds, one will have extreme muscle stiffness and rigidity.


Clonic seizures – Clonic seizures are the least common type of seizure. They are repetitive and rhythmic jerks that involve both sides of the body at the same time. These are generally misdiagnosed or over diagnosed as other neurological impairments can appear the same when one is not in fact having any type of seizure.


Tonic-clonic seizures – These are the most known seizures, perhaps the only type that one will think exists, your traditional grand mal seizure. These can be really scary to watch. They begin with a tonic phase, in which the body will tighten right up, sometimes noises such as groans or what seems to be cries can occur while this happens, and then this is when one will usually fall to the ground and lose consciousness. After that, convulsions will begin.  This can be dangerous as it is not uncommon for one to bite their tongue or cheek, or hurt themselves among their convulsions. It is important for those surrounding someone having a grand mall to protect them from hitting their head, and it is suggested that you try to get that person on their side.  Bladder and bowels can sometimes lose control (insult to injury, huh?) , the body finally relaxes and consciousness returns slowly, leaving the person drowsy, confused, depressed or even agitated.


Partial seizures:


Simple partial seizures – You are fully aware when you have a simple partial seizure. These can be classified as simple motor, simple sensory, and simple psychological. Your arm might start moving or face might twitch. Hearing, smells, tastes and or the feeling of touching may be effected. Memory and emotional disturbances are common. Two examples are gelastic and dacrystic  seizures, which are laughing and crying seizures. You will literally uncontrollably laugh or cry, with no rhyme or reason. It can actually be quite scary.


Complex partial seizures – A person may be aware or not aware that the seizure is taking place. Things like lip smacking, fidgeting, chewing and other involuntary movements may take place.


Secondarily generalized seizures – These can often be confused with grand mal seizures as convolutions can take place, but only one part of the brain is involved and there is no tonic part of this type of seizure. One will generally not recollect having this type of seizure. These seizures occur in 30% of patients who have partial seizures.


Another note I should add if you have any questions if you think you may have had a seizure, it generally wipes you out, especially having any sort of a generalized seizure. Many only last either a few seconds or just a few minutes. You will be generally be completely exhausted and will want to go right to sleep. That is an indication after an event you aren’t sure about, that you may have in fact had a seizure event.


There is also a term called cluster seizures or continuous seizures, meaning just as it sounds, one seizure after another, or seizures that last over five minutes. If this occurs it does require immediate medical attention.


How can seizures be tested and diagnosed? MRI tests as well as CT’s can detect lesions and other abnormalities such as tumors or blocked blood flow, but they are fairly limited when it comes to seizure diagnoses if there are no lesions, as well as showing encephalopathies. It is a great start to your testing to provide information to check to see if you do have any brain lesions, which does happen with long term chronic Lyme patients.


There is a test called a SPECT scan, that shows how blood flows in the brain, as well as if there is any sort of brain swelling, which can contribute to your seizures. Even with the SPECT scans however, they can still miss things on the test as seizures as they can ALSO be caused by spinal issues. I would recommend seeing a chiropractor to keep your spine in the best shape as possible. Other benefits include better posture, which will help alleviate back pain, and adjustments can also release those pesky spirochetes for you to destroy.🙂


An EEG can be used to diagnose seizures by viewing brain waves. This can be a valuable took as it can be used to diagnose the type of seizure on is having. Wires glued to the scalp can sense where there are spikes in brain activity. It is however a valuable tool to use in addition to a full evaluation of a patient.


WADA testing is also used to diagnose seizures. An angiogram of the brain will be done before your testing to show your blood flow, and the catheter will stay in place during the testing. What happens is a neurologist will put half of your brain to sleep by injecting sodium amytal. When one part of the brain is injected, the other side of the brain cannot communicate with it. A neurologist will show you pictures and objects. The same will happen with the other side of the brain. You will then be quizzed on what you were shown to see what you remember. This will essentially tell a neurologist your brain functioning.


A MEG test is similar to an EEG, but the difference is the skull and tissues around the brain affect the MEG test less than an EEG. This is an edge over having an EEG, and when combined with an MRI, it is a great option to find where the seizures are localized.


Neuropsychological evaluations by a neurologist are commonly used to access a patient to give you a diagnoses. This is how I was first diagnosed by having seizures, after my MRI came out normal, with exception of a small lesion in my spine (maybe contributing to some of my seizures… who knows). By a patient describing symptoms, you can be clinically diagnosed with having a seizure disorder.


It is also important for your doctor to rule out any other causes. Blood tests, spinal taps to test for infections and toxicity screenings are commonly used.


What can I do?  I will first of all say, treat Lyme and it’s co-infections, and treat your symptoms. There is no need to suffer more than you have to.


I was very hesitant at first to start medications that can be used to help control seizures, but in the end it was worth it since it has helped me greatly to control my seizures, thus giving me a much better quality of life while I am struggling with having Lyme disease. Seizure medications can really help put everything in control, and over 50% of patients first medications given to them generally control their seizures. If you do have any issues with your medications, DO NOT STOP COLD TURKEY. This can be a very bad thing to do as it can actually cause an array of other problems. If there are any issues with your medications, call your doctor right away. In some severe cases of seizures, surgery may be required to control seizures, but that is not something that Lyme patients would ever really have to worry about, as seizures tend to stop occurring once Lyme and co-infections are treated.


It is important to know when it is an emergency if you are having a seizure or when it is not an emergency. Generally, having a seizure is actually not an emergency. Do however, contact your doctor either way or put it in your notes for your next appointment. If it is a new occurrence, you injure yourself in any way, have cluster seizures, or a seizure lasts longer than 5 minutes, or the person is blue, have someone call 911. That brings me to my next thought…


Let others around you know about your condition and how they should handle it. If someone around you doesn’t know how to handle it, it will scare the crap out of them and can cause them to panic, when instead the best possible thing for them to do is to remain calm. Dave is no use to it now he kind of just throws me over his shoulder and brings me out to the car or into the house. I generally have seizures when I am out somewhere. Maybe keep an identification card handy on you so others know if your friends or family are not around.


One should never put anything in your mouth, and despite popular beliefs, one who is having a grand mal seizure will never swallow their tongue. It doesn’t happen. Nope. Not true. During a grand mal it is best to try to get that person on their side, as it helps keep their airway clear. Don’t hold the person down. Loosen clothing around the person’s neck, and remove sharp objects from the area.


One with seizures should be cautious. If you are continuously having seizures, avoid dangerous situations. You might have to give up driving for awhile, or possibly not do that roofing job you wanted to do. Basically, use common sense.


There are often triggers to seizures. I have recognized a lot of mine, and it has made a world of a difference in addition to my seizure medications. Flashing lights, bright lights, lack of sleep, hunger, stress, overstimulation (the number one cause of Lymie seizures), fevers, certain medications, and hyperventilation can all cause seizures.


Although we all have our Lymie diet, it has found to be beneficial to do what is called a Ketogenic diet. This is high fat foods, and very few carbohydrates. Of course, starting a new diet needs to be monitored by your doctor.


All the seizure information you need in one place? I hope so! Best wishes to you all and happy healing. 🙂


I am not a doctor. Do not take any information I give as professional medical advice. If you have any questions please contact your doctor and if you feel there is an emergency, have someone call 911.





23 thoughts on “Lyme and Seizures

  1. Excellent Kimmie! Well written. I am glad that you have found relief as so many folks with Lyme seizures suffer terribly. Then there are those with the nebulous diagnosis of non-epileptic seizures like me. Nothing shows up on testing and yet every medical professional I have seen in the past 2 1/2 years has seen me have one. Here’s the good news: I have found relief in non-THC industrial hemp oil. It’s called high CBD hemp oil and there’s plenty of research to document it’s effectiveness with seizures and convulsions. I’ve had days with 1/2 hour of minor incidents: down from 3-4 hours per day for the last 8 months. I am thrilled! You have helped so many with your blogs; please look into it. There is hope!

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  6. Hi, I suffer from tonic-clonic seizures for a year now due to my lyme disease. My lyme specialist figured out giving me IV magnesium with a neutralizing dose of Rocephin stopped my seizuring. I was on IV rocephin for a year and was up and running again. But whenever I “over do” it or have a lot of stress, my lyme symptoms really flare up.

    • I agree, I have found overdoing it has brought most of my seizures on for me. I think over time with treatment and the right formula of seizure meds has helped me a lot since they aren’t nearly as frequent.

  7. I have lyme and seizures. I have been on keppra for 2 years, i was trying to ween off the keppra and had a grand mal last Friday morning. My seizures come in the early morning while I’m in bed. I wish I can get better.

  8. Hi I’m not sure if I’m messaging the write place, but I live in Australia & my very good friend has Lyme disease & has started having the seizures, & Australia doesn’t recognise it as a disease so won’t give her anything.. Is there treatment for Lyme disease in America?

    Thanks Bianca

    • Yep! There are several LLMDs. Some better than others of course. I would suggest going to and trying to request a doctor through there, or joining and asking on FB.

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  10. For a number of reasons, I’ve decided to treat my lyme with medicinal marijuana. I can’t smoke, so I stay away from flower mostly but a few weeks ago, I ingested some and had what can only be referred to as an “episode”. Last night, I tried ONE pull from a vape and had not only an asthma attack, but another episode. Both times, my heart/chest area felt like it was being slowly shocked, and I felt waves of weird sensations-nausea and a loss of muscl control or twitching. The first time I cried excessively and couldn’t stop and this time I chose not to panic, but felt like I could wet myself, and went uncomfortable numb and nauseous over and over again while feeling like I was going to die. Now I’m convinced these were seizures of a conscious variety. I’m not sure what to do. I generally don’t see doctors and to let this felt like a bunch of times up to an hour, so it might be cluster seizures and serious. I’m at a loss. Please help. I have had chronic lyme for 10 years. I’m 26 years old.

    • I would honestly go see a neurologist. You don’t have to use the “L” word. They are there to help ease the symptoms. Just tell them what is going on. I used to have a ton of seizures and nearly all are controlled now with the help of medication and of course treatment.

  11. I’m praying that you can shed some light on what’s going on with me. I have Lyme Disease which went undiagnosed for over 4 years. I’ve had flare ups for years; I wouldn’t be able to get out of bed, my joints would hurt, headaches and so on. All the typical Lyme symptoms. The flare ups would last a few days to a week then I’d be alright. I’ve always lived with constant never ending pain. In the month, my health has spiraled out of control! About a month ago, I woke up one Sunday morning real dizzy and felt like I’d been hit by a train. On the following Thursday, my head was killing me, I fainted and had to be took to the ER. I don’t remember fainting, I remember being in and out of sleep in my mom’s truck, scared to the death because I didn’t know what happened. My daughter said that before I fainted, I was saying that something is wrong with my head. She said I kept saying I feel like I’m going crazy, it feels like ants are biting me and crawling in my head! After that, I’ve had several different incidents, but I haven’t fainted anymore. My family tells me that I start starring off, sometimes I get emotional, sometimes I’m mean, sometimes I speak and my words are slow and slurred and sometimes I don’t speak! My family says after this happens, I go straight to sleep. Every time this happens, my right arm hurts me terribly from my shoulder to my finger tips from the time I wake up till sometimes into the next day! The scary part is that I don’t remember any of this! Can you help me understand? The doctors think that my mom and I are crazy!

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