Hey Everyone! I hope this video has been helpful for you! If you would like to support me for the work I do, you can contribute financially through my buy me a coffee page. www.buymeacoffee.com/ticcersunite I don't get paid for any of my videos, they are not monetized. Adverts are still shown because TH-cam feels they have the right to advertise on creators videos, but if the videos aren't actually monetized then the creator doesn't get anything. I put a lot of time into researching, making videos, and editing, so if anyone did want to help out then that would be amazing! Please do not feel obliged to do so though, it's just great to have you all here!
Thank u for making a video on this!! More need to be aware of how debilitating this disease is. It literally stole my childhood and at 20 I'm finally getting treatment. I pray that other kids find out way before i did
May I ask what the treatment is? My son is 19 and I think he was misdiagnosed hos whole life. My mom heart is hurting. Is there a way to help him now at 19?
you’re not alone, got my diagnosis 2 weeks after my 20th bday and that was only 3 days ago. i’ve always felt so guilty for feeling like my childhood was just wasted. i hope treatment is going well for you🩵sending love
Are you able to set up a fundraiser to get specialist care? If you are ever actively suicidal, please call a helpline (not one that will send you to a psych ward, research the safest ones. Some are really good.) I'm sorry that you have been given strictly psych treatments. Are you in any PANS PANDAS Facebook support groups? They can be super helpful and give great advice.
@@ChronicAdvocate Thank you for your reply :) my symptoms stem from a Bartonella Henselae infection causing Autoimmune Encephalitis. Similar to the concept of PANS/PANDAS. When my condition first started, I had confusion and hallucinations and ended up in a coma. I was treated with an immunosuppressant and Antibiotic at this time. I recovered from these acute symptoms. But since then, I don’t think my Immune System and Brain ever really became “friends”. I have joined support groups on Facebook and they’ve made me feel a bit less alone in this. My symptoms have began making it very difficult to keep pushing and searching for the right medical help. But I will keep on trying.
Thank you… I’m trying to find out if I truly suffer from PANS & not just OCD & looking back at my life, the way it came on at the same time I was having repeated step infections & sudden texture issues with food- & so many more things.. I used to be on the math team in middle school & LOVED math & I feel like I can hardly use my brain anymore… 😢
Such an amazing clever articulate person. You have really helped us with your video, so informative. We have only found out about this recently and our son has shown these symptoms since being very young but he's now an adult and on Antipsychotics due to miss diagnosis and our GP and Early Intervention Team have never heard of Pans/Pandas. Much love and blessings to you ❤ 🙏
Im one of those people that has lost decades to poor health because of untreated Pandas. I had a surgery in 1975 and then had ocd and body shame after. I didn't befite the surgery. But thanks for posting this. Its hiniring.
I had PANDAS as a child but back in 2007 there was no known cure so I was left untreated. I always struggled with depression and major anxiety along with a variety of other problems and for a long time I always felt like there was something deeply wrong with my brain. Only recently did I learn I was never properly treated and it's been difficult to really process. It feels like I lost who I was meant to be....
I completely understand and you aren't alone. It is never too late to work on addressing inflammation, natural methods can be helpful for some people so even if you can't access the classic PANDAS treatment now there are natural interventions which may help. In fact, even depression that isn't associated with PANDAS/PANS is thought to often be inflammatory now. I had untreated PANDAS/PANS for many many years, which is the reason I am so disabled now as an adult. Natural interventions have helped quite a bit though even though they can't completely solve the issue. You aren't alone but I know the sort of mourning process of wondering what your life could have been can be super hard, but I promise there's still hope for the future.
@@griffycohen Not too late at all - I know people who developed PANS in early childhood but didn't get diagnosed until their 20s. It's not too late at all.
I've had pandas since I was 5 and was just passed off as mentally ill... ocd adhd tourettes, except very few vocal tics.. until I started getting low grade fevers and corea as an adult. Also bipolar and severe circadian rythm disorders. Idk how much of it is pans and how much of it is genetic or me being neurodivergent but I can't really get tested now because I'd have to wait until i randomly get extreme fevers and then get my antibodies tested... but this shit literally started right after a strep infection as a kid Plus the chorea. Pretty sure i have pandas
It does definitely sound like it could be PANDAS. I know it can be harder to get diagnosed when you have had it for a long time, as the original infection may not be able to be detected and stuff. However, maybe you could still see a PANDAS/PANS specialist or a functional medicine doctor (they focus a lot on finding the root of a condition), there may be a chance that they could help you. I know someone who has had PANDAS/PANS for 15 years and is now finally getting the help they need so there is always hope.
@@ChronicAdvocate yeah turns out there is an immunologist a couple hours away from me who treats it and she's she's treated adult patients who've gone untreated like me. I did a phone consultation and they def think i have it. Another thing is that I was raised by new agey/neglectful parents and when i would get Hella sick as a kid i was rarely taken to the Dr. I've most likely had rheumatic fever at least 5 or 6 times which explains why eventually I got sydenhams chorea. And I don't know if this is normal but when i get chorea it comes along with severe central shooting pains. I can't afford to see the immunologist yet with my insurance but for now I'm just taking antibiotics for cheap and Hella herbs to also self medicate until i save money money get private insurance. I use to self medicate flares with ketamine and shit and now no one can say I was abusing drugs because ketamine actually has a profound affect on neuroinflammation. Explains why I would try other drugs even opioids alcohol etc and I never felt any relief from them. Do you know of any other communities like a discord or something where I can meet other adults dealing with it?
Sorry for infofumping bro you're just one of the only humans on the internet who knows anything about this and you sure know a lot you're channel has been a goldmine for my mental health because one of the worst things about all of this has been the gaslighting saying I'm making things up and feeling crazy for thinking that there was something else going on
I'm so glad that there is an immunologist near you who has knowledge on PANDAS and can treat adult patients!! That's fantastic. I'm sorry that you are unable to see them though 😔 Financial issues and insurance issues suck. That's interesting that Ketamine can affect neuroinflammation, I didn’t know that. I know that severe depression is sometimes treated with it so I wonder if that's how it helps. I'm sorry to hear that you likely had Rheumatic Fever which went untreated 😔😔😔 and I'm sorry that your parents didn't take you to the doctor when needed, I know how invalidating that can feel.
I tried to take my life many times. 2 nembutal overdoses. 1 time consuming random forest mushrooms. Carbon monoxide poisoning on a boat.. didnt work. I tried a charcoal fire and i disconnected the exhaust on the gas heater.
Hey Everyone! I hope this video has been helpful for you! If you would like to support me for the work I do, you can contribute financially through my buy me a coffee page. www.buymeacoffee.com/ticcersunite I don't get paid for any of my videos, they are not monetized. Adverts are still shown because TH-cam feels they have the right to advertise on creators videos, but if the videos aren't actually monetized then the creator doesn't get anything. I put a lot of time into researching, making videos, and editing, so if anyone did want to help out then that would be amazing! Please do not feel obliged to do so though, it's just great to have you all here!
I'm so impressed with how articulate & mature this girl is!
Thank u for making a video on this!! More need to be aware of how debilitating this disease is. It literally stole my childhood and at 20 I'm finally getting treatment. I pray that other kids find out way before i did
May I ask what the treatment is? My son is 19 and I think he was misdiagnosed hos whole life. My mom heart is hurting. Is there a way to help him now at 19?
@@missusklenz487 go to a naturopath, one that specializes in Pans/Pandas/Lyme. Most typical doctors will dismiss it
you’re not alone, got my diagnosis 2 weeks after my 20th bday and that was only 3 days ago. i’ve always felt so guilty for feeling like my childhood was just wasted. i hope treatment is going well for you🩵sending love
Just diagnosed at 27. It's been a horrific journey.
So So sad! My son is 22 and we need help.
My symptoms are making me suicidal. The strictly psychiatric treatments I’ve been offered have ruined me.
Are you able to set up a fundraiser to get specialist care? If you are ever actively suicidal, please call a helpline (not one that will send you to a psych ward, research the safest ones. Some are really good.) I'm sorry that you have been given strictly psych treatments. Are you in any PANS PANDAS Facebook support groups? They can be super helpful and give great advice.
@@ChronicAdvocate Thank you for your reply :) my symptoms stem from a Bartonella Henselae infection causing Autoimmune Encephalitis. Similar to the concept of PANS/PANDAS. When my condition first started, I had confusion and hallucinations and ended up in a coma. I was treated with an immunosuppressant and Antibiotic at this time. I recovered from these acute symptoms. But since then, I don’t think my Immune System and Brain ever really became “friends”.
I have joined support groups on Facebook and they’ve made me feel a bit less alone in this. My symptoms have began making it very difficult to keep pushing and searching for the right medical help. But I will keep on trying.
Have you looked into Neurofeedback?
Thank you… I’m trying to find out if I truly suffer from PANS & not just OCD & looking back at my life, the way it came on at the same time I was having repeated step infections & sudden texture issues with food- & so many more things.. I used to be on the math team in middle school & LOVED math & I feel like I can hardly use my brain anymore… 😢
Such an amazing clever articulate person. You have really helped us with your video, so informative. We have only found out about this recently and our son has shown these symptoms since being very young but he's now an adult and on Antipsychotics due to miss diagnosis and our GP and Early Intervention Team have never heard of Pans/Pandas. Much love and blessings to you ❤ 🙏
gotta question can you get realy bad muscle tension from this because i have muscle tension a year after having it I'm 14 btw
I couldn't donate....it wouldn't take my US credit card?
Thank you for your experience- look at Medical Medium’s Brain Saver books for PANDAS
You are so smart,GOD bless you sweetheart 🙏
Im one of those people that has lost decades to poor health because of untreated Pandas. I had a surgery in 1975 and then had ocd and body shame after. I didn't befite the surgery. But thanks for posting this. Its hiniring.
I had PANDAS as a child but back in 2007 there was no known cure so I was left untreated. I always struggled with depression and major anxiety along with a variety of other problems and for a long time I always felt like there was something deeply wrong with my brain. Only recently did I learn I was never properly treated and it's been difficult to really process. It feels like I lost who I was meant to be....
I completely understand and you aren't alone. It is never too late to work on addressing inflammation, natural methods can be helpful for some people so even if you can't access the classic PANDAS treatment now there are natural interventions which may help. In fact, even depression that isn't associated with PANDAS/PANS is thought to often be inflammatory now. I had untreated PANDAS/PANS for many many years, which is the reason I am so disabled now as an adult. Natural interventions have helped quite a bit though even though they can't completely solve the issue. You aren't alone but I know the sort of mourning process of wondering what your life could have been can be super hard, but I promise there's still hope for the future.
i feel the same way i think i have it. how do i get diagnosed ?
im 25 is it too late to get better ? my depression is the worst its ever been
@@griffycohen Not too late at all - I know people who developed PANS in early childhood but didn't get diagnosed until their 20s. It's not too late at all.
@@ChronicAdvocate can you get pandas pans at 18?
I've had pandas since I was 5 and was just passed off as mentally ill... ocd adhd tourettes, except very few vocal tics..
until I started getting low grade fevers and corea as an adult. Also bipolar and severe circadian rythm disorders.
Idk how much of it is pans and how much of it is genetic or me being neurodivergent but I can't really get tested now because I'd have to wait until i randomly get extreme fevers and then get my antibodies tested... but this shit literally started right after a strep infection as a kid
Plus the chorea. Pretty sure i have pandas
It does definitely sound like it could be PANDAS. I know it can be harder to get diagnosed when you have had it for a long time, as the original infection may not be able to be detected and stuff. However, maybe you could still see a PANDAS/PANS specialist or a functional medicine doctor (they focus a lot on finding the root of a condition), there may be a chance that they could help you. I know someone who has had PANDAS/PANS for 15 years and is now finally getting the help they need so there is always hope.
@@ChronicAdvocate yeah turns out there is an immunologist a couple hours away from me who treats it and she's she's treated adult patients who've gone untreated like me. I did a phone consultation and they def think i have it.
Another thing is that I was raised by new agey/neglectful parents and when i would get Hella sick as a kid i was rarely taken to the Dr. I've most likely had rheumatic fever at least 5 or 6 times which explains why eventually I got sydenhams chorea. And I don't know if this is normal but when i get chorea it comes along with severe central shooting pains.
I can't afford to see the immunologist yet with my insurance but for now I'm just taking antibiotics for cheap and Hella herbs to also self medicate until i save money money get private insurance.
I use to self medicate flares with ketamine and shit and now no one can say I was abusing drugs because ketamine actually has a profound affect on neuroinflammation. Explains why I would try other drugs even opioids alcohol etc and I never felt any relief from them.
Do you know of any other communities like a discord or something where I can meet other adults dealing with it?
Sorry for infofumping bro you're just one of the only humans on the internet who knows anything about this and you sure know a lot you're channel has been a goldmine for my mental health because one of the worst things about all of this has been the gaslighting saying I'm making things up and feeling crazy for thinking that there was something else going on
I'm so glad that there is an immunologist near you who has knowledge on PANDAS and can treat adult patients!! That's fantastic. I'm sorry that you are unable to see them though 😔 Financial issues and insurance issues suck. That's interesting that Ketamine can affect neuroinflammation, I didn’t know that. I know that severe depression is sometimes treated with it so I wonder if that's how it helps. I'm sorry to hear that you likely had Rheumatic Fever which went untreated 😔😔😔 and I'm sorry that your parents didn't take you to the doctor when needed, I know how invalidating that can feel.
I'm a mom & I am so so sorry you had to deal w/ all this hell. I hope you were able to find some relief!!
bruhhh either these are really common things to think about or youre reading my mind i swear-
I tried to take my life many times. 2 nembutal overdoses. 1 time consuming random forest mushrooms. Carbon monoxide poisoning on a boat.. didnt work. I tried a charcoal fire and i disconnected the exhaust on the gas heater.
I'm so sorry that you have been through so much. 😔 I hope things can improve for you.