Lyme Neuroborreliosis or Neurological Lyme Disease symptoms vary with each individual. These symptoms involve the central nervous often show up weeks or even years later when you think you have beaten the disease. It is usually in the second or third stage that the patient experiences these neurological Lyme Disease Symptoms.
What is going on to trigger these central nervous system reactions?
Here in the United States, Borrelia burgorferi and Borrelia mayonii are the predominant tick coinfections that are responsible for central nervous system symptoms.
How do these bacteria work to disrupt the central nervous system?
“After transmission has occurred, bacteria will begin to migrate through the body via the bloodstream or lymphatic system. Of the two, the lymphatic system provides Borrelia with easy access to the central nervous system, allowing the bacterial particles to cross the blood-brain barrier and infiltrate cerebrospinal fluid (CSF). The invasion of CSF by Borrelia triggers an inflammatory response in the central nervous system, manifesting with the characteristic symptoms of LNB.” https://www.verywellhealth.com/lyme-neuroborreliosis-4581590
So what are the ways Neurological Lyme affects your body?
Brain and Dementia Symptoms: (Lyme Brain)
“Neuroborreliosis is the name for the neurological disorder caused by Lyme disease. The symptoms of neuroborreliosis include memory impairment, attention deficit, sleep disturbances, cranial nerve abnormalities, dyslexia, decreased verbal fluency, and sensitivity to light. In some cases, depression, anxiety, panic attacks, mood swings, hallucinations, and progressive dementia may also occur. In children, the most common symptoms of neuroborreliosis are headaches, behavioral changes, learning difficulties, and sleep disorders.”
Lyme disease takes an emotional toll on its victims as well as a physical toll.
In fact, according to the data compiled by LymeDisease.org, approximately
62 percent of patients with chronic Lyme experience depression
(https://bestlifeonline.com/how-depression-affects-the-body/) as one of
their main symptoms
“A prior case series of patients who developed chronic neurologic Lyme disease in the United States (64) noted that encephalopathy may emerge months to many years after treated erythema migrans and that about 22% of these patients with late neurologic manifestations show an initial improvement in cognition after intravenous ceftriaxone therapy that is followed months later by relapse. Our patient demonstrated severe headache at the time of the EM rash which suggests meningeal inflammation, a symptom profile also reported by 41% of the patients at initial infection in the case series of patients who later developed chronic neurologic Lyme disease. Notably, our patient did have a good response to the antibiotic treatment only to develop a sleep disorder 2 years later and a cognitive disorder 4 years later.”
This patient’s neurodegenerative disorder demonstrated clinical (REM behavior disorder, visuospatial, and attention problems) and neuropathologic features of a Lewy Body Dementia. The case report raises the question of whether B. burgdorferi may play a role in the development of Lewy body dementia. Future studies will be directed at testing more affected subjects and more control subjects in order to substantiate or refute this possible link.”
Frontiers | Detecting Borrelia Spirochetes: A Case Study With Validation Among Autopsy Specimens (frontiersin.org)
This is when the Borrelia burgorferi infiltrates the cranial nerves that are located in the brain stem. This involves your sense of smell, hearing, taste, vision, balance, facial expression movements, head-turning, and tongue movement. It may cause facial palsy where you experience impaired smiling, blinking, or chewing on either or both sides of your face. You may have vision problems including double vision that comes and goes unexpectedly.
“The otolaryngologist may be called upon to see both groups of patients, with any number of signs and symptoms referable to the head and neck, including headache, neck pain, odynophagia, cranial nerve palsy, head and neck dysesthesia, otalgia, tinnitus, hearing loss, vertigo, temporomandibular pain, lymphadenopathy, and dysgeusia. We review our institutional experience with 266 patients with Lyme disease, 75% of whom experienced head and neck symptoms. ” Otolaryngologic aspects of Lyme disease – PubMed (nih.gov)
Lymphocytic Meningitis- (different from viral Meningitis) Even Mayo clinic states that meningitis can be caused by bacterial infections. Most people do not know that. Most doctors are not familiar with bacterial Meningitis especially when it is called by the Borrelia bacteria.
The Borrelia bacteria infect the lymphatic system as well as the central nervous system. You may get swelling of the brain and spinal cord membranes which shows as meningitis symptoms such as neck pain, stiff neck, inability to turn your head, or pain that includes the whole back of your head and neck. This kind of Meningitis can go away on its own or land you in the hospital. It is usually treated with antibiotics.
I experienced this last year. It was diagnosed as a severe, dangerous lymphatic infection. The doctor I had was not trained in Lyme Disease. When I told him about the severe pain in the neck and brain stem of the back of my head, he just stated it was part of the severe infection. I talk about this from experience so you may realize what is going on if it happens to you. It was after the second milder attack months later that I called a Lyme literate doctor.
Lymphocytic Meningitis is very serious folks…..very dangerous. When it hits you, you may not realize how serious the situation is.
When it happened to me, it was part of a nasty sore throat that had gone on for a week. The infection then began to move into my Lymphocytic system causing swollen lymph nodes in my neck and throat. I could feel it moving into the right side of my neck and into the neck muscles then up into the back of my head. My brain stem was extremely sensitive and painful to touch and to put any pressure on the skin such as the pillow. The pain was very severe. It got worse to the point there was pain lifting my head from a lying position. I could not turn my head without pain from side to side. Just walking hurt my neck and head. The night before I called the doctor, severe pain took over the whole back of my head. The pain was severe to the point I nearly went to emergency. I knew we would end up with a huge bill, so I took herbs and OTC pain relievers to get through that night.
I went to the doctor the next day after this very severe neck pain took over because I had never experienced those symptoms in my life. I was miserable.
He did give me doxycycline for 10 days saying it was a very serious lymphatic infection but he is not a Lyme-literate doctor. He said if that did not work that another antibiotic would have to be given. I had no idea at the time it was part of the Lyme issue. I was at a loss to understand why it was happening.
I took the doxycycline because I knew the infection was serious and dangerous. I did not know you can have Lymphocytic Meningitis. At the time the thought went through my mind but I dismissed it. I only was familiar with viral Meningitis. The antibiotics did reduce the severity of neck and head pain. The lymph nodes in my throat and neck did get smaller and the pain got better. Even after two weeks of antibiotics, I still had significant neck discomfort.
I did some research and found out that Peppermint, Frankincense and Myrrh should help with the neck discomfort and the inflammation throughout the back of my head.
The essential oils over a week reduced the neck pain significantly. Even months later, there is mild pain and discomfort in the brain stem area and up the back of my head. I use the oils nightly.
I did not take any more antibiotics because of the side effects from the doxycycline after 5 days. It took almost two months to heal my stomach and severe diarrhea. The drug chewed up my stomach and ability to eat or even leave the house.
Interestingly, the doctor did prescribe Doxycycline which is used for Lyme Disease. There are several drugs that I am resistant to or simply cause severe adverse reactions. I asked him why this particular drug and he just stated it was worth trying. It is my gut feeling, he suspected Lyme Disease but did not voice that. He did, however, tell me the infection was very serious and that if the antibiotic did not work, I might have to get IV antibiotics.
I did not get in that first experience it had anything to do with Lyme. It did not occur to me since I had a sore throat first. I did not know that sudden, severe sore throats are also one of the symptoms when the Borrelia bacteria line the throat. Borrelia is a gram-negative bacteria so a strep test will be negative. They have two walls so is harder for antibiotics to kill them off. Many antibiotics do not effectively destroy gram-negative bacteria.
This is inflammation of your spinal nerve roots. The spinal nerve roots transmit signals from the brain to the peripheral nerves in your arms, legs, and body. When the spinal nerve roots are inflamed, you will feel numbness, weakness in muscles, burning sensations, tingling or like someone is sticking you with pins. It often comes and goes with moderate to severe pain making it impossible to sleep. These sensations may be around where the tick bite occurred. You will be laying there in bed and suddenly you feel like someone is sticking you with pins. You can experience these sensations in any part of the body including your feet, legs, arms, scalp, or neck. The closest description is like someone is sticking you with pins.
You can also experience this after an injection of Rocepherin which is one of the antibiotics used to treat Lyme Disease. I went through hell after getting a Roceperin shot in my rump. The shot hurt which I expected but within hours after the shot I experienced nerve pain in every part of my body including my scalp, female organs, leg, and hip where the shot was given, and all over the body. It went on for almost three weeks before the nerve pain finally went away. When that happens you need to call the clinic where you got your shot and let them know you had a severe, nasty reaction to the drug.
This is inflammation of your peripheral nerves. This causes numbness, pain, and extreme weakness in the hands and feet most often. You may also feel this as a deep, miserable aching pain in your lower back, hip, or legs. It is usually worse at night so it is hard to sleep.
Encephalitis and Spinal Cord Myelitis
Severe symptoms include confusion, tremors, impaired speech, gait or walking abnormalities, and involuntary movements of the eyes. This complication is rare but patients should be aware of it.
Vertigo and dizziness as One of the Symptoms of Lyme Disease
There are thousands of visits to the Emergency room for vertigo and dizziness. The majority of these visits are misdiagnosed on all counts. Among the many causes include TIA’s, strokes, inner ear disturbances, and Lyme Disease.
Does antibiotic therapy completely irradicate Lyme Disease?
Dr. Bill Rawles in his articles and books first took the standard medical protocol of antibiotics. It was when they did not work for him in the long term that he investigated and then went to herbal protocols for the Lyme Disease he went through. Buy his book and read his response to the antibiotic protocol and his observations of patients he has treated on how effective antibiotics are in the long term.
“The typical response of our patients to antibiotic therapy supports the role of spirochetal infection in the pathogenesis of each of the syndromes described here. However, our results were not as good as those in previous reports.6 , 7 Six months after treatment, more than one-third of the patients either had relapsed or were no better. In addition, more than half had previously received antibiotic therapy thought to be appropriate for their stage of disease and still had progression of the illness. The likely reason for relapse is failure to eradicate the spirochete completely with a two-week course of intravenous ceftriaxone therapy. On the other hand, the patients whose conditions did not improve may have had irreversible damage to the nervous system, particularly since the response to therapy tended to be worse in patients with longer durations of disease. This is reminiscent of far-advanced neurosyphilis, in which the response to penicillin may be minimal.36“
“Post-Treatment Lyme Disease Syndrome Even after the completion of therapy, as many as 10% of people with Lyme disease will experience persistent symptoms, referred to a post-treatment Lyme disease syndrome (PTLDS).14 While the reasons for this are unclear, some scientists believe that certain antibiotic-resistant Borrelia strains are able to elude detection and persist despite treatment.”
Misdiagnoses include Alzheimer’s, aseptic meningitis, brain tumor, Chronic Fatigue Syndrome, Diabetic neuropathy, Fibromyalgia, HIV, Guillain-Barre Syndrome, Lupus, MS, Neurosyphilis, Post-herpetic neuralgia, Tangier’s Disease, and TIAs or Transient ischemic Attacks, mental health illness, and other mental health disturbances. This is why patients go years without a proper diagnosis.
Tests for neurological Lyme
Most patients go to various doctors who misdiagnose their problems or tell them it is all in their head.
You are ignored as if you are making up your symptoms. You may suffer for months or years with symptoms.
MRI scans, cerebrospinal fluid testing, brain scans, spine scans, neurocognitive testing, nerve testing, and neuropsychological tests are all used to diagnose neurological Lyme disease. The problem is whether or not your doctor will run the tests and if your insurance company will cover the tests.
Intravenous antibiotics are typically prescribed for 14–28 days to resolve the bacterial infection.
The difficulty of testing for neurological Lyme
“The diagnostic difficulty is due in part to Borrelia‘s ability to evade immune detection by “hiding” itself in the structural matrix of tissues and cells. At the same time, Borrelia secretes a protein that suppresses the production of antibodies that the body uses to target an immune attack.”
Living with setbacks is part of Lyme Disease
Lyme Brain and Lyme Neurological Symptoms .. together in one nasty package.
Read my full story of what Lyme Neuroborreliosis (Neurological Lyme Disease) can do and it is severe.
I just came through a setback the past month (March) so I talk from experience. I originally contracted Lyme Disease when we lived in TN about 4 1/2 years ago. We lived in an area called Indian Mound, TN which is about an hour from Clarksville, TN out in the most beautiful, green, tree-filled areas of TN. Our area had thousands of trees with thousands of ticks. Even after buying chickens and ducks to help keep the area clean and clearing the land around the house and barn, we still took ticks off of us daily.
When I first got sick, I thought I had the flu so didn’t go in immediately. By the time I dragged myself into the doctor 5 weeks later, I was the sickest I had ever been. None of my usual herbs like Goldenseal or Oregano had worked at all.
My memory and my balance got so bad that our new neighbors noticed it when they gave us a hand with some chores. We were in our first year of opening our backyard nursery business and I could not remember the names of the plants or the details about growing them for customers. I think the customers wondered if I had a drug problem. I looked awful.
I left the stove on with eggs boiling twice almost to the point of exploding the eggs. My husband got more and more concerned. It was the neighbor who talked me into going to the doctor. When I dragged myself in, I had a fever as well which was rare for me. I usually run a subnormal temperature. At this point, after lab tests confirmed it, I had Lyme Disease.
You may feel better for months or year after initial treatment but………..
In the past years, I regained most of my memory function, which has been under control. Then once in Oct of last year and again the past month, I came down with a nasty sore throat which nothing worked on, and feeling brain symptoms once more.
Sore throats, sudden, strep-negative, that last for weeks. What is this?
One of the lesser-known symptoms of Lyme Neuroborreliosis (Neurological Lyme Disease)
“Lyme disease is an important consideration in the differential diagnosis of patients seen by the otolaryngologist. Facial paralysis is the most common sign. The otolaryngologist may also see patients with temporal mandibular joint pain, cervical lymphadenopathy, facial pain, headache, tinnitis, vertigo, decreased hearing, otalgia and sore throat. ” https://pubmed.ncbi.nlm.nih.gov/7828475/
I got a hold of a questionnaire for Lyme Disease when I was researching and the first two questions were about persistent swollen glands and sore throat….these two symptoms are not in most of the typical articles on symptoms.
“Clinical features of Lyme disease, including skin, joint, cardiac, and neurologic involvement, are discussed here, along with recent studies that better characterize these clinical manifestations and more clearly define their immunopathogenesis. The diagnosis of Lyme disease is based on the clinical presentation. Laboratory testing may be helpful but has significant limitations, which we discuss in our review.” https://pubmed.ncbi.nlm.nih.gov/1503876/
I did not get it. I thought it was actually a common strep sore throat involving the lymph nodes in the front of my neck spreading around to the back of my head. The neck and back of head inflammation were odd symptoms that I had never had before. I got deep eye pain, and my brain felt non-functional and inflamed but I chalked it up to the sore throat infection.
None of the herbs worked on it. I went to two doctors locally who are not trained in Lyme disease. They ran a strep test that proved negative and declared it a viral infection.
I was taking herbs including Lysine, vitamins, and zinc that should have worked on either a viral or strep infection, but they did not.
I did not think about Lyme because of the swollen lymph nodes and the pain all through my neck and back of my head which were new symptoms.
Even after the worst of the symptoms went away, I still had some inflammation over the whole back of my head. Just odd symptoms that were new. I found that the essential oils of frankincense and Myrrh massaged into the back of the neck and skull took most of the pain away. It still didn’t make sense all these new symptoms.
The discomfort in the back of the head persisted even though the sore throat got better over time. I used essential oils massaged into the neck, and brain stem area of my head nightly. I increased my doses of turmeric and ginger as well. By November of last year, I felt almost normal.
For 4 months I felt amazing!
Between November and March 1st of this year, I felt better than I had in several years. I started writing again and for the first time in several years, my brain function seemed normal. I was so happy. I also stopped taking Neem and Andographis thinking I could take a break from the regimen.
We went to CA for Christmas, flew twice on 3 different planes, spent time with our son and grandkids, went to parties with them, and never got sick. New Year started well with us not getting sick. We never have gotten covid and did not get it on the trip either. Jan 1st we got home from the trip. I began working on my websites again and on my writing. I was getting up at 4 am and working until 10 am every day. It was so wonderful to feel normal again.
Then on March 1st, I woke up with awful throat pain. We had gone to a church social gathering just 3 days before so I thought we had caught something there. For a week the infection was focused on the throat. Then slowly the pain began taking over my lymph nodes in the front of my throat under my jaw and moving around through the lymph system to the back of my head again. I booked an appointment with a local doctor. I went in to see if it was strep but the tests came out negative for both covid and strep. He had no useful advice other than a viral attack.
It came to me at that point that I was having some Lyme symptoms as well. My balance was affected, deep eye pain, and my brain felt inflamed, no fever but it did not make sense. My brain felt dysfunctional like I was disconnected from everything around me. Writing articles was out of the question. I was irritable, cranky, and unpleasant to be around. My husband was a saint. I did not want to be around anyone or have conversations. I was agitated at everything. My throat was still hurting and my gut was not happy either. I decided to contact a Lyme-literate doctor hours away from us. We could not afford a full visit with a Lyme Doctor but paid for a video consultation.
A video consultation with a Lyme doctor gave me answers.
Lyme Neuroborreliosis (Neurological Lyme Disease)
So, I paid for a video meeting with a Lyme-literate doctor after being sick for three weeks and he informed me that his diagnosis was neurological Lyme disease that attacks the throat, and the nerves in the neck and the head.
The sore throat was probably a Borrelia infection where the bacteria inflame the throat tissue. They are gram-negative bacteria with two walls with matter in between that do not respond to antibiotics or herbal treatment well. If you take antibiotics, the medicine can penetrate the first bacteria wall but most of the time does not penetrate the second well to kill the infection. The Lyme bacteria then go into your lymph nodes in your throat and along the nerve pathways of your neck and back of your neck and head. It can turn into Lyme Meningitis getting so bad you end up in the hospital.
Neurological Lyme is one of the later stages of chronic Lyme disease. It can show up weeks or years later after the original diagnosis and treatment. Basically, you did not wipe it out completely as you thought. It just went into hiding and was laying low until the right circumstances. In this case, I stopped my herbal regimen thinking I was finally ok. I dropped my guard down. It made sense with all that had happened.
I was told to go back to my original treatment of using Neem, Andrographis, and Japanese Knotweed with an aggressive dosage 3 times a day. I used Sage, Choline, Gingko, and other brain herbs as well.
Within 5 days of resuming the regimen of tick-specific herbs, the symptoms are almost gone and I am back to writing.
Lyme looks at some points like you have beaten it but instead, it often comes back later to attack again months or years later. When it comes back it often shows up with different symptoms which are confusing.
Once it inhabits your tissues and is not in the bloodstream, antibiotics do not help much. When I got sick last year with the first attack, I did take 10 days of doxycycline. It did help a little on the neck involvement but tore up my stomach so severely, that it took several months to return to normal, even with using some expensive probiotics and herbs to soothe the stomach lining.
The reason the doxycycline did not work is that it was not strep but Borrelia bacteria in my throat which is a very stubborn gram-negative bacteria with two walls. Strep is a gram-positive bacteria and only has one wall. It all made sense after the phone consultation with a doctor who was a Lyme expert.
Then I went back to research the later stages of Lyme disease and it was all there. All those symptoms matched what I had experienced. Neither the throat specialist nor the two standard medicine doctors had a clue because it was strep negative and took weeks to get better. They gave me no suggestions for why it took over my lymph nodes and the whole back of my neck and head. They just shook their heads.
The next article will cover what therapies and herbs help you to get well with Lyme Neuroborreliosis (Neurological Lyme Disease)
Cathryn Freer, the Herbladyisin
Visit my page on Lyme Disease Educational Resources
Read my story on my Lyme Disease Battle