Neurological Lyme disease often falls outside usual mold
Dr. Elena Frid, who recently spoke at the ILADS conference in Philadelphia, shares observations about neurological presentations of Lyme disease.
After finishing my training in Neurology and Clinical Neurophysiology, I opened a private neurology practice in New York City in 2011. Soon, I found that many of my patients had peculiar neurologic presentations such as abnormal visual disturbances, intractable headaches, fainting spells, walking problems, balance and dizziness disorders, unusual seizures and many other conditions. These patients were worked up by specialists and experts from all over the country and many remained without a diagnosis.
Although my practice grew slowly, the number of unusual patients who didn’t really fit into a specific mold of any one neurologic disorder multiplied exponentially. When some of these patients talked about Lyme disease and other vector-borne illnesses, I listened. After doing some research on my own and talking to local Lyme-literate doctors, I was hungry for more information. Thus, I was glad to find the International Lyme and Associate Diseases Society (ILADS), where I could learn more about this mysterious disease that in medical school and residency was glossed over with a motto of: “Easy to diagnose and treat.” In 2014, I started going to ILADS conferences.
In the three years I have attended these events, I have seen a significant rise in the number of patients, doctors, vendors and healthcare providers in attendance. I see more research being presented every year. I continue to see patients learning from doctors and doctors learning from patients.
Prior to ILADS 2016, I spent over a year working with Dr. Charles Ray Jones – a pediatric Lyme specialist from Connecticut and a legend in the Lyme world. We saw multiple patients together in his practice, most with neurologic manifestations of Lyme disease such as headaches, insomnia, visual disturbance, cognitive impairment, psychiatric symptoms, fatigue and many other symptoms. After, months of treatment many of these patients got better. However, there was a subset of patients who continued to have symptoms. Through clinical work up such as: physical exam findings, lumbar puncture, SPECT scan, EEG, MRI of the head, and blood work we identified evidence of infection-Induced autoimmune encephalitis in these patients. We treated them with various combinations of antibiotics, intravenous immunoglobulin, and a blood treatment process called plasmapheresis.
This year in Philadelphia my role changed from a student to a teacher. I presented my work on “Diagnosing and Treating Infection-Induced Autoimmune Encephalitis in Patients with Persistent Lyme Symptoms.” We collected a cohort of 30 patients from Dr. Jones’ pediatric and my adult neurology practice and submitted our data to ILADS, which was very well received by both the organization and the attendees. We maintain that patients with infection-induced autoimmune encephalitis need to be treated with IVIG at immune modulating doses while continuing appropriate antibiotic therapy. Unfortunately, many physicians who otherwise understand and treat autoimmune encephalitis, fail to treat the infectious component. To help these patients, however, one must address the infectious and the autoimmune components of their illness simultaneously.
There were other important topics presented at ILADS2016 including:
- Zhang’s on how pulsing antibiotics does not work well against resisters.
- Balin’s on infections triggering neurodegenerative disorders i.e Alzheimer’s disease.
- Theoharides’ on effect of Mast Cell Activation syndrome in patients with tick-borne illnesses.
There were many important topics addressed at this year’s ILADS conference, however; the main points that I took away were:
- Listen to your patients and apply your clinical knowledge to improve their quality of life.
- Learn more about the disease.
- LymeDisease is a misnomer – for many it is MUCH MORE than just Borrelia burgdorferi
- Tick-borne illnesses are characterized by infectious agents that affect multiple organ systems and stimulate an autoimmune phenomenon leading to a complex clinical presentation.
- To treat patients, one must identify all the pathogens and all the ailments that one has and treat them ALL at the same time.
- Attend annual ILADS conference! You will have access to a tremendous amount of talent and experience at your fingertips in big lecture halls as well as small breakout sessions where you can connect and learn from the best.
- Seek out and work with organizations that will help you learn and help spread awareness about Lyme disease – like I did by connecting with LymeDisease.org.
Here is a recent interview with Fox5NY:
More information about Dr. Elena Frid at her website elenafridmd.com.
Dr. Frid saw our daughter this summer. She is an extremely bright, curious, and thorough doctor. You have to be a brave and special person to treat tick borne disease. Hopefully doctors like her while help lead the sea of change that has to come to help patients suffering from Chronic Lyme and other evasive and challenging to treat tick-born illnesses.
Thank you Dr. Frid, for being teachable & daring to brave the world of Lyme Disease. God Bless You!
Thank you for the very efficient overview of your learnings. I am currently in my 4th month of IV antibiotic treatments with very promising results. What I learned through my journey was that my brain symptom was constant blurred vision and extremely dry eyes with pain only behind my one eye This was the same side I had Bell’s palsy in 2001. I am grateful that my systems never manifested with raging headaches but my cognitive loss was significant along with vertigo like symptoms and what I used to call the drunken stagger. I haven’t walked in a straight line or been able to balance on a weight scale for 20 years. And I thought it was due to my dough delivery of my son. Either way please keep up the great work. My life will be forever changed but in many ways – for the better. No ,ore depression, psychiatric issues, rage, body boiling etc. I appreciate my life and body and will take much better care of it in the future
Many people with Lyme disease end up with visual processing problems, which can affect balance and the ability to walk in a straight line. For more information on this topic, see http://padulainstitute.com/ –DKL
Thank God for physicians like you. You are spot on!
Why do you charge such exhirbitamt fees if you are knowledgable how rare it is that doctors don’t know much about this and there are people suffering. Your fees are higher than the unaffordable few Lyme literate doctors.
It’s an unfortunate fact of life that Lyme-treating doctors are often targeted by insurance companies, forcing many to lose their livelihoods. (See the award-winning film UNDER OUR SKIN for details.) In self-defense, many Lyme doctors don’t take insurance. –DKL
Everyone with tick borne disease suffers financially . That is an unfortunate reality. Hopefully legislation like that in Massachusetts will spread to other states giving patients better insurance coverage for treatment of tick borne disease. That being said, we take our daughter to a Lyme literate doctor and her improvement is worth every penny. We have found the charges to be quite reasonable. Our doctor certainly is not getting rich! Most Lyme doctors including Dr Frid are focused on patient care not financial gain.
My name is Lorraine Quattrone & I have chronic Lyme disease, antibiotics are not touching it & made me very sick! I started studying natural antibiotics like cannabis & have been on different oils for 4 months now & still wasn’t much better I change oils Everytime after so long on them to try others & the last 2 are slowly helping me revive from my shell of a body & being bedridden, they are CBD, God bud, & THC, Qrazy! I’m up more , actually cooking, cleaning, not staying in bed all day & my foggy head is clearing, I’m praying to God that this is my healing meds. I have a medical license to go in the dispensary’s!
Dear All does any one have information and inner eye inflammation???
You might find this helpful: http://danielcameronmd.com/growing-list-eye-problems-lyme-disease/
Can I get an appointment, how much do you charge? I am so sick after 17 years…..
Thank you Dr. Frid for your contribution in the fight against Lyme disease.
In 2000, I had a bull’s eye rash on my back, had Bell’s palsy, and lost the lower half of my Field of Vision in both eyes due to stroke. I went to several doctors but could not get an accurate diagnosis. I recovered and life went on for 10 years. In 2010, after 6 months of chemotherapy for leukemia, my immune system was very low, and I became bedridden, made no sense when I talked. Doctors did an MRI and CT scan and I was diagnosed with hydrocephalus. The neurosurgeon for hydrocephalus thought my condition was not hydrocephalus, but instead, Jakob Creutzfekdt, a fast progressing dementia, and advised my wife to look around for a nursing facility as he felt I had only four or five months to live. In the meantime, he checked the block for Lyme after a blood test. (He had been the only doctor to test for Lyme.) The Western Blot came back positive for Lyme. He diagnosed me with Lyme meningoencephalitis and he prescribed two weeks of IV via PICC infusion of Ceftriaxone. After the 14 days, a physical therapist was assigned to teach me how to walk again and a speech therapist to restore my brain function. This support lasted two months, and although weakened, I became normal again. That was 7 years ago and I have a lot to be thankful. I had a wife and daughter who helped me throughout this ordeal but I sometimes wonder what happens to those without the support I had. Are they just put into a nursing home without diagnosis or treatment? What are we doing for them? My recommendation is that we take a look at the backgrounds of those we put into nursing facilities, and if they have been diagnosed with fast progressing dementia, give them a test for Lyme disease. They may be cured with antibiotics.
Can you share who diagnosed your lyme and treated you, please.
I was diagnosed by Michael A. Williams, MD, Medical Director, Brain and Spine Institute, Department of Neurology, Sinai Hospital, Baltimore. Dr. Williams has since moved to the Neurology Department at the University of Washington in Seattle.
Neck pain several months now. Massaging with essential oils helps but it’s getting worse with headache and memory gaps. What to do? Want to hold this off as long as possible.
Dx lyme in 2009-10. Took lots of doxy but not for several months after high fever. Have been through several phases. Treating myself. Doctor no help at all.
Very very intelligent and knowledgable young Doctor.
I have a question, I have had a positive western blot for lymes, I have all of the neurological symptoms including tremors/seizures ext….. when I first started doctoring I thought I had MS they did a lumbar puncture to do tests because My MRI showed flattening of pituitary gland and optic nerve prominance but no lesions so they thought they would check spinal pressure. A neurologist says it isn’t neuro lymes because they didn’t find anything in the spinal fluid only in blood tests and if it was neuro lymes it would have showed something in spinal fluid and its not MS because there were no lesions. I have been suffering a great deal for a long time I was on antibiotics for a year but still have all the neurological issues. I don’t know that I believe or trust the neurologist obviously something is affecting me neurologically
Lyme disease does not necessarily show up in spinal fluid. Recommend you be evaluated by a Lyme-literate neurologist.