Chrissy's Journey with Autoimmune Encephalitis
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In February 2021 Chrissy was diagnosed with autoimmune encephalitis (AE). Although they did not properly identify which specific type back in 2021, they did confirm the encephalitis she had caused the seizures and impaired cognitive issues that she started having. Her journey with this condition started with her experiencing a full-body tonic clonic seizure one morning back in February 2021. Prior to being effected by AE, she had never experienced a seizure. Following the seizure she was taken directly to the Ellis Hospital emergency room. Following her initial ER visit, she had several more ER visits, as-well-as; a 2 week long stay at Albany Medical Center, an in-hospital EEG monitoring stay at AMC, MRIs, CAT scans, two spinal taps and several visits with countless neurologists throughout the Capital Region, one in NYC and one in Boston. Throughout all of this she was prescribed several different medications by each neurologist as they attempted to control her seizures and cognitive symptoms. She eventually ended up on a treatment regiment including three different daily seizure medications and put back on monthly IVIG (Intravenous Immunoglobulin) treatments under administration of an epilepsy neurologist, who then left the practice. A Neuro at AMC has since kept her on the IVIG and tried tweaking her meds here and there with no improvements. This current treatment plan is essentially a “band-aid”, which is just partially controlling her seizures and she is currently having 1 to 2 seizures, about every other day, sometimes daily.
Now, in 2025, Chrissy continues to have daily seizures, chronic fatigue and frequent memory loss. I was able to find an Autoimmune Encephalitis (AE) Neurologist in NYC, and about a month ago Chrissy had: a 72 hour at-home EEG, another MRI, a new round of blood work, and a fresh spinal tap. Two weeks ago I took her to NYC to also start seeing a new Epilepsy Neurologist, who the AE Neurologist recommended (who Chrissy is now is seeing instead of the AMC Neuro). Recently she had a follow-up Telemed appt with the new AE Neuro and went over the spinal tap results. The results confirmed Chrissy has GAD65 Autoimmune Encephalitis (which AMC has dismissed from the beginning, although her GAD65 levels have been extremely high since she got sick in 2021). Her GAD65 numbers are still coming up very high in her blood and spinal fluid showing there is still active Encephalitis. Based on Chrissy’s recent test results, the AE Neuro is ready to admit her ASAP to Columbia NY Presbyterian in NYC. She will likely be there for 10-14 days, as they will be doing the following: a long-stay EEG, a specialized MRI, all while under a treatment plan of combined plasma exchange and steroids (alternating the two every other day for 6-10 days). The goal of the stay is come up with a more appropriate medication treatment plan for Chrissy that is intended to treat the GAD65 AE, which is imperative. Once the plasma exchange and steroids are complete they will determine which additional long term medication will be used in addition to her monthly IVIG, that will be more targeted at certain cells that are associated with the GAD65.
Chrissy does not qualify for any disability benefits or assistance, because although she is unable to work, she does not have enough work credits since she took on her dream job of becoming a full time mom when our children were born. Chrissy would do anything in the world to be with her children every moment, even when that means sacrifices. We had hoped that Chrissy would get disability to help with the financial strains we have been facing but even with a lawyers guidance we have not found it possible. So while our family continues this journey of healing and starts this next chapter of continued medical co-pays, driving to and from NYC, long hospital stays…...we are reaching out to ask for support in any way possible, thoughts, prayers or monetary donation if you are able.
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I wanted to share an update on Chrissy as of May 9, 2025 -
A bed opened up and she was admitted at Columbia in NYC yesterday. Upon arrival there were a lot of mix ups and confusion that has stirred up a lot of her medical PTSD, things seem to be settling though. After meeting with the doctors following admissions, they went over what the plan would entail during her stay. They confirmed they will be performing a long-term EEG, a steroids/plasma exchange regiment, and a specilized MRI. They started her on steroids last night. They also attached all the EEG wires to her last night and started the long-term EEG monitoring. After the EEG monitor runs for a few days, they plan to disconnect the EEG and to do the specialized MRI.
They had planned to insert the port for the plasma exchange today and start the plasmaexchangetomorrow, but had issues inserting the port. At this time they will need to either try inserting the port again tomorrow, or monday. Once they insert the port, and begin the plasma exchange, they said she will be there for 10 days.
Chrissy is really scared, and being so far away from home doesn't help. I plan to go back and forth while also keeping the kids supported. Thank you to all of our family and friends for all of the tremendous emotional and monetary support. Words can't express how much it has helped.
Thank you all for your continued support
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Update as of 5/13/25:
A doctor from the Interventional Radiology team was able to successfully place a port in Chrissy yesterday under ultrasound and radiology and she completed her first plasma exchange. Thanks to everyone’s thoughtful contributions, strength and positive thoughts, I was able to drive down and sit with her throughout most of the exchange! I plan to visit Chrissy a few more times throughout her stay. As of now she will receive 4 more exchanges every other day, so she will be there at least until Wed May 21, potentially longer.
Her AE Neurologist will be visiting her today to give any additional information regarding her treatment plan and give feedback about how things are going so far.
We are beyond greatful for all of the support we have received near and far.
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Update as of 5/17/25:
Chrissy's AE Neurologist visited her to check in and let us know that things are moving along as planned. Although she is still very scared and has a great deal of confusion, it was good to hear that the doctor felt she was getting the care she has needed.
I was also able to make another trip to see Chrissy for a few hours this past Thursday and be in-person when the doctors did thier rounds. This was nice, because they were able to clear up some issues we recently had, which was easier to work through in person.
She completed her 3rd plasma exchange yesterday and also had an IVIG infusion this morning.
She continues to receive steroids, and will for a few more weeks. Her 4th plasma exchange is tomorrow, then her final one will be 2 days after!
The kids and I are so proud of her, and we are all grateful for everyone's amazing support!! Your thoughtfulness and kindness have helped so much!
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Chrissy Borzon Thompson is HOME! We can not express how thankful we are from the bottom of our hearts for all of the messages, words of encouragement, donations, thoughts and prayers.
This stay at NYP enabled Chrissy to receive all 5 treatments of Plasma exchange which, the goal of the treatment is to attempt to "wash" the GAD65 antibodies out of her blood....... this is not a cure but a treatment that should have been done when
Chrissy was first diagnosed. Unfortunately there is no cure for Chrissys condition, and the next steps will be to continue to travel back and forth to NYC for follow ups, introducing new medications, and updated cognitive testing by a specialist. When possible we will also do video visits!
All of your continued donations, love, support, sharing of chrissys story, thoughts, prayers, acts of kindness from our friends and neighbors are helping us to catch up on medical bills, repair our car so we could make the trips to and from NYC, pay for hospital parking (insane each time you go), gas, tolls, food, bills etc
Chrissy is currently adjusting to being back home so may be slow to reply, but is so grateful for all of your support and love.
Here is a great article that gives a brief summary of Chrissy's treatment, along with more information about GAD65. As we have learned though, through Chrissys specialists, no patients story or treatments are the same, much of this is uncharted waters:
Organizer
Jonathan Thompson
Organizer
Schenectady, NY