TOUCHED BY LYME: When Lyme makes your body attack your brain
When Patrik was 2 years old he started limping and complaining that his legs hurt. His doctor called it “growing pains.” Through the years, he continued to have troubling physical ailments, and his mom Carla kept taking him to doctors, who kept dismissing his symptoms.
Once in school, Patrik had a hard time paying attention and remembering things. And, one day when he was about 10, he started blinking his eyes uncontrollably.
Once again, none of the doctors they consulted could figure out what was wrong. But they all agreed on one thing: it couldn’t possibly be Lyme disease. (Something Carla had come to suspect.) Interestingly, the blinking stopped temporarily when he was put on amoxicillin for something else—a factor that none of his doctors found significant.
Then, last year, all hell broke loose. New symptoms came flying at this young boy like a “perfect storm.” He was overcome with anxiety. He stuttered and cried, with wild moods swings erupting into fits of rage. Finally, his parents connected with a Lyme-literate doctor, and Patrik tested positive for Lyme disease.
But Lyme treatment alone was not enough to stem the rising tide that was hijacking this now 12-year-old boy’s body and brain. After months of desperation, Patrik’s family found a doctor who knew how to deal with autoimmune brain dysfunction triggered by Lyme disease.
The following remarkable video shows Patrik, Carla, and Dr. Souhel Najjar.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
What is his treatment plan
Greetings, the current treatment plan is IV IG every other week and variation of oral antibiotics over the last 18 months.
Current medical professionals and others that have helped- Dr. Souhel Najjar – autoimmune neurologist; Dr. Bernard Raxlen – Lyme Literate MD; Dr. Thomas Szulc – Integrative MD; Dr. Stephan Cowan – Acupuncturist & Pediatrician; Dr. Katherine Karlsrud – Pediatrician.
Hope that helps
So powerful ..thank you for sharing your journey so that others may learn. ..and so very glad your son is getting the treatment he needs
Thank you
yes what is dr. Najjar’s treatment method and what kind medicine he used.
Dr. Najjar’s current treatment for Patrik is IV IG – Gammunex C every other week – to help boost immune system and hopefully ‘reboot’ on its own and to protect his brain from further attack.
So happy you are getting better Patrick! Our family has been through similar issues and I’m glad you are getting the word out. Best wishes- keep going forward!
Thank you Terry
This is my son to a tee. We finally got confirmation he has 3 types of bugs for lyme that has been untreated for about 6 years. He is 8 now it’s been absolutely awful. We’ve been on a roller coaster for the last 2 years finally got more answers.. Is this Ivig he gets and what type? So glad to see your son doing well.
Hi Nicole, I am sorry to hear about your son, but glad you have discovered sooner than later…..IV IG listed above. I wish for speedy recovery for your son. Patrik is better but long road ahead…..
Hope this helps. My son now 21 is very functional and works every day. For 1.5 yrs he went psychotic. Long story short Lyme disease. After learning a lot about this disease we now see the issues as a youth. Anyways a doctor in Idaho gave Jim his life back. Lymestop.com. It works. I was skeptical and refused to take him but my wife did anyways and thank God.
Hi Rick, How is your son doing now? I am considering Lymestop for myself and my kids. It is hard to find information from people beyond immediate treatment or a few months later.
Is anyone familiar with any Dr. Out in the west coast dealing with neuro autoimmune associated with Lyme.
Was all this sadly caused by a tick bite?
Heartbreaking for all concerned.
Yes, tick bite…..probably when he was an infant. Patrik’s had a diffuse rash on his chest 2 months after he starting limping in pain. My mother lives in CT and we had a farm upstate NY. Chances are pretty narrowed down to one of those two places…….
I’m sorry to be blunt here, but at this point doctors need to be held liable for criminal negligence. Every day a new story about someone with Lyme disease who doctors didn’t believe.
Agree……..
Thank you for your post. My son has nearly the same story — lyme disease, tics, behavioral issues only he also has CVID. Luckily we were able to see Dr. Najjar just two weeks ago and he has ordered a lumbar puncture because he suspects some type of autoimmune encephalitis. I am anxious about the procedure and the outcome, but I know we are in good hands with Dr. Najjar. I pray that your son continues to improve and ask prayers for my son and all the children who suffer from this. It has taken years of going from doctor to doctor and pushing for answers to get to this point. The lack of knowledge and training surrounding lyme and the autoimmune illnesses that can result from it and other chronic infections is truly shocking. I anguish over the many people that must be out there suffering and have no recourse — or do not even realize why they suffer because of ignorance or incompetence on the part of their doctors! Lyme is out of control in this country — far worse than the aids epidemic of the 80’s — and yet doctors are not trained to treat it and insurance companies refuse to cover it! And now, after years of ignoring lyme and it’s co-infections, the resulting tsunami of autoimmune illnesses are presenting much more daunting problems — and requiring much more expensive treatment. Talk about penny-wise and pound-foolish! Not to mention the human suffering. When, when, when will they learn?
Lisa, I am so sorry to hear about your son’s suffering and yours as family watching this all unravel. I soooo understand how sickening our system is and how it fails our children and future. I am thinking of all of you that posted. If any want reach me directly please reach LDo through Dorothy Leland. Will share what I have learned. Carla
So what do we do. When we ask for our child or ourselves to be checked for Lyme. Is there a test that will show the full truth of what we have if we have it.
What an awesome young man and you, a great Mother!!! I know he will be cured, and one day he will have a great testimony. May the Lord bless and keep him and yourself.
Thank you for sharing your touching story- I watched it in tears knowing just how you felt. Our once super-bright, ambitions, athletic and stable daughter has been diagnosed by her LLMD with Lyme disease- and (due to the medical community’s lack of knowledge relating to Lyme symptoms and treatment) we’ve watched her deteriorate both physically and mentally over the last few years. At this point she suffers from beyond debilitating depression, anxiety and cognitive impairment, and is curled up in a ball in bed in mental mystery most of the day, just about every day. The mental health professionals we’ve been able to find know nothing of Lyme and although the Lyme doctors try to treat her fatigue, intestinal and neurological physical symptoms (so far with no success), they seem to only refer us out to mental health professionals for her psychiatric/brain symptoms. We feel like we are on a never-ending and progressively horrible downward spiral with this and don’t know where to turn. Watching this video, of course makes me want to seek out Dr. Najjar Unfortunately we live on the other coast. If I can even get an appointment with him is there some specific test he does to determine if she is suffering from Lyme cause autoimmune brain encephalitis? Really feeling desperate here!!:(
Hello Beth I was wondering how your daughter is doing today?
Carla I cant thank you enough from the bottom of my heart that you have shared your story. I am excited to see that your son is doing better. This is the first time in all my research of 5 months that I found someone that has the EXACT same symptoms of my 14 year old daughter. I could never find a lot of information on the act of age progression. You have given me hope since we only realized 5 months ago that she has been suffering from Lyme for 5 years. Carla god bless you and your amazing son. Please know you have given this family hope. May strength and progress be prominent in your future.
Thank you so much for sharing your story. I hope that your son is improving greatly. I have a question. At any time…did your son get an MRI of his brain and if so did anything show up on it? I have chronic Lyme and a few coinfections, as well, and I’m having a lot of neurological symptoms now. I had an MRI done last spring and the dr said it looked fine. I’m much worse this spring but I’m just wondering if it ever shows up any way? Thanks so much and God Bless.
Dear Michele, sorry this reply so late, I haven’t checked this site. But my son’s MRI’s were ALL NORMAL……looking for brain tumors bc his memory loss. Talking about FISHING for answers. Wrong diagnotistic. I think the SPECT is the imaging that can help determine LYME diagnosis and show the hypo fusion in the brain. You would need to seek out LLMD to help you with that.