Autoimmune Encephalitis treatment for Mackenzie

I am at a point where I don’t know what else to do so I am setting this up to ask so genuinely for support and help. Please consider donating to help me with my bills and medical treatment for autoimmune encephalitis

What is autoimmune encephalitis ?

Autoimmune encephalitis is a type of autoimmune disease in which your immune system attacks your brain tissue. In my case i have a specific type called PANDAS ( I was diagnosed at 18 and i’m 22 now )  , there is strep and pneumonia in my blood and in my brain and my immune system attacks it , but they hide by molecular mimicry and instead my brain tissue gets attacked. It’s a cute name for not so cute symptoms. It causes extreme fatigue to where I can’t leave my bed , tachycardia and almost blacking out just from standing up , disruptive tics , joint pain , chronic infections ( i get mine in my bladder and kidneys ) , migraines , brain fog, debilitating OCD , panic attacks and a variety of other things. On top of these i’m also anemic and have debilitating back pain ( scoliosis and sciatica )

What happened recently ? 

Last year I had a concussion that caused complications with my brain disorder. Over the past year I have progressively gotten worse my brain fog is so severe I will spend days out of it barely knowing what is going on gritting my teeth to get through each day. Fatigue is the same way I can barely get out of bed , it’s a good day if i’m able to even shower or cook a box of mac n cheese. I’ve gotten back to back infections and viruses that cause even more flare ups. I’ve had the same infection for a year ( either bladder or kidney ) and i’ve gone through 4 rounds of antibiotics it just won’t go away. The last month I have been in a scary place with my health. I’ve been in the ER twice and had complications from a doctor who prescribed me medication that i should not have had. ( That doctor also had his license suspended last year , but we had no idea of that at the time ). 

Far from home 

On top of my health being so hard and scary I’m far from my family. My parents live on the other side of the country in michigan. So i truly am supporting myself financially and emotionally. It is so heartbreaking to go to every appointment without the in person support of my parents. You need the help of a village to lift you up in times like this and I often feel like I carry that weight on my shoulders. It’s so hard to be so far from them

Treatment 

The treatment that I want to pursue is IVIG therapy which is a treatment that costs thousands per infusion on top of having to have it at a hospital and all of those appointment and admittance fees. I also want to pursue specialists in encephalitis and a neurologist who can help me and my silly swollen brain. I would need MRIs which my insurance keeps denying because i don’t have access to the doctors I need to get one. 

What next ?

All I want is to be able to be healthy and out of pain. I want to go to college and have a career. I haven’t been able to even attend classes because i’ve been disabled since I was 18. I want to be able to pour out all of my bad experiences in being a patient to techs and doctors and be someone in the medical field who can really help patients emotionally. I have these dreams to do bigger things , but right now I am left in medical debt and not even able to make my bills by myself. 

I am so grateful for even reading about this and my struggles and my journey. I have been fighting this since I was 12 and I continue to fight and seek the help I need. I am so grateful for any help at all or even just educating on what PANDAS and autoimmune encephalitis is :)