Have you considered trying High dose Thiamine, specifically TTFD or benfotamine? It is used to treat similar conditions that affect the basal ganglia. I am searching for possible connections.
Hello, I recently saw a private neurologists in the uk as I've been treated pretty poorly on NHS for years. The Neurologists feels I've been misdiagnosed with personality disorder and suggested I have complex neurological disorders even possibly pandas/pans. After looking at the symptoms for pans I match up with pretty much all the symptoms. I was wondering if you have any suggestions, for a uk specialist for treatment in adults please?
Hi, my son who has had tourettes and ADHD since sine 3 years old suddenly developed OCD symptoms and has had daily rage attacks. The OCD and rage attacks started after he was in summer camp for 2 weeks. We have been to physicians and now he is in treatment at a psychiatrist. He is getting Risperidon, but without any positive effects. We live in Germany. Do you know of any LDI practitioner in Germany? Or who can we turn to? Thank you in advance
I'm sorry to hear about this. I don't know of any LDI docs in Germany. Many of us who work with LDI work with patients long distance. If you'd like to work with me, please email my front desk at eastcoastnaturopathic@gmail.com
I’m a 12 year old girl and I recently got told by my doctor that I have pandas pans and I have a question do you have to have your blood tested for any kind of treatment I haven’t been told what treatment I would have to get. but i went to the doctors a couple weeks ago to get my blood tested and I freaked out I had a Panic attack and hit one of the nurses by accident and then I ran out it was so embarrassing and I don’t want to have to get it checked i just want to know if there’s anyway I can avoid it. I’m just scared about the needle going into my vans it hurts to think about. And I have another question they put numbing cream on my arm and it still hurts and it was two months ago my mom said that i’m just imagining it but I can feel like actual pain in my arm whenever someone touches it so I just wanted to ask about it so thank you. Sorry if I messed anything up I have a hard time spelling
While I don't have any answers for you (I'm just a mom who watched this video and saw your comment) I wanted to say I wish you all the best getting through this. I hope that your parents believe you and can help you get your questions answered. I have a teen daughter who has panic attacks, and I just wish I could give you a big hug.
Hello doc, is this something that needs a prescription? Can parents buy and administer the dose themselves? I am guessing this is not covered by insurance in US.
Questions... Which genes are more prone to developing pandas? The Mthfr mutation?? Where there is a defect in the bodies methylation and detoxing system How healthy are the livers in these patients? We're they born with elevated bilirubin levels? Did they have a bad reaction to the one year old immunizations.. Strep pneumonia vaccine? When a child develops a fever with this infection does it cross over the blood brain barrier? Are they low in vitamin d? Was the mother given the mmr vaccine during pregnancy? Which contains mercury a toxic mineral. We're the mothers given any medications during delivery , for induction? Also do these kids have a primary immunodeficiency disorder such as X-linked recessive inheritance? I found that my kids are sensitive to strep A and kids who have this condition are as well.
MTHFR alone is not enough information. examine the full methylation pathway, inflammation pathway including CTLA4 and DRD2, most importantly IL5 as it pertains to viral susceptibility
Please help me im 37 and having still.concurrent throat and ear sensitiviy/ inflammation. I was on a section 2 for "mental health" im tired of demeaning rhetoric. How do I contact you? If needed and should be able to afford private consultation.
Do you have any experience giving the S. salivarius K12 probiotic? Seems like a good option for kids who are specifically triggered by Strep A. Also are you finding Monolaurin effective at all as a natural antibiotic, antiviral and anti microbial? Dr. Steven Phillips mentioned using it a ton in his practice.
you have to find a clinician who uses it. Most of us mention it on our websites. To my knowledge, there is no central database of clinicians who use it. I wish there was one, though!
My 3 year old granddaughter I and her mom really feel she has Pans and in a worse way. We do know they have been exposed to mold and while my daughter was pregnant with her child she was also exposed to mold. Our little girl has severe OCD, can have very mean streaks where she hits her mom and won’t listen to anything you say and becomes so out of control and rarely wants to eat, you swear she was starving her self but Mama keeps trying to make her eat. This problem has been so intense that it is very hard for anyone to function with these things going on. She also doesn’t sleep well, but when she is not having the flares she is just a little sweetheart, I know she can’t help that she has that, her mom is trying all kinds of remedies to help her, she has no doctor that even understands what pans is, they actually probably think the mother is exaggerating, the story and only wanting attention because when she takes her little girl to the doctors, the child behaves very well so it kind of makes it look like the mom is crazy. Which is wish there was someone we could turn to that could help us because it’s really getting out of hand, I wish doctors know more about it. We live in Minnesota. If you know anyone that can help her could you please let me know? Thank you so much for your information.
I'm sorry to hear about this - what a tough situation. Many clinician offer long-distance consultation services. If you folks would like to work with me, my front desk email is eastcoastnaturopathic@gmail.com Dr. Jill Crista ND does long distance consultations, too - she is an amazing mold illness and PANDAS/PANS expert.
Please help me im 37 and having still.concurrent throat and ear sensitiviy/ inflammation. I was on a section 2 for "mental health" im tired of demeaning rhetoric. How do I contact you? If needed and should be able to afford private consultation.
It’s all about the vagus nerve sensory system and the parasympathetic nervous system. Medical Reflexology is the key. It’s part of the pie
So true! The vagus nerve gets imflamamed. And everything is a mess.
Have you considered trying High dose Thiamine, specifically TTFD or benfotamine? It is used to treat similar conditions that affect the basal ganglia. I am searching for possible connections.
I've used this with many patients, but not with PANS. Good idea!
Hello, I recently saw a private neurologists in the uk as I've been treated pretty poorly on NHS for years. The Neurologists feels I've been misdiagnosed with personality disorder and suggested I have complex neurological disorders even possibly pandas/pans. After looking at the symptoms for pans I match up with pretty much all the symptoms. I was wondering if you have any suggestions, for a uk specialist for treatment in adults please?
No, sorry, I don't know anyone out there.
What is low dose immunotherapy?
I wonder how many are waking sleeping TBDs with treatment for strep.
Hi, my son who has had tourettes and ADHD since sine 3 years old suddenly developed OCD symptoms and has had daily rage attacks. The OCD and rage attacks started after he was in summer camp for 2 weeks. We have been to physicians and now he is in treatment at a psychiatrist. He is getting Risperidon, but without any positive effects. We live in Germany. Do you know of any LDI practitioner in Germany? Or who can we turn to?
Thank you in advance
I'm sorry to hear about this. I don't know of any LDI docs in Germany. Many of us who work with LDI work with patients long distance. If you'd like to work with me, please email my front desk at eastcoastnaturopathic@gmail.com
I’m a 12 year old girl and I recently got told by my doctor that I have pandas pans and I have a question do you have to have your blood tested for any kind of treatment I haven’t been told what treatment I would have to get. but i went to the doctors a couple weeks ago to get my blood tested and I freaked out I had a Panic attack and hit one of the nurses by accident and then I ran out it was so embarrassing and I don’t want to have to get it checked i just want to know if there’s anyway I can avoid it. I’m just scared about the needle going into my vans it hurts to think about. And I have another question they put numbing cream on my arm and it still hurts and it was two months ago my mom said that i’m just imagining it but I can feel like actual pain in my arm whenever someone touches it so I just wanted to ask about it so thank you. Sorry if I messed anything up I have a hard time spelling
While I don't have any answers for you (I'm just a mom who watched this video and saw your comment) I wanted to say I wish you all the best getting through this. I hope that your parents believe you and can help you get your questions answered. I have a teen daughter who has panic attacks, and I just wish I could give you a big hug.
Hello doc, is this something that needs a prescription? Can parents buy and administer the dose themselves? I am guessing this is not covered by insurance in US.
video reply is on its way :)
When you say ticks do you mean like a big bite from a tick?
No like involuntary,a repeat of actions
Questions...
Which genes are more prone to developing pandas?
The Mthfr mutation?? Where there is a defect in the bodies methylation and detoxing system
How healthy are the livers in these patients?
We're they born with elevated bilirubin levels?
Did they have a bad reaction to the one year old immunizations..
Strep pneumonia vaccine?
When a child develops a fever with this infection does it cross over the blood brain barrier?
Are they low in vitamin d?
Was the mother given the mmr vaccine during pregnancy?
Which contains mercury a toxic mineral.
We're the mothers given any medications during delivery , for induction?
Also do these kids have a primary immunodeficiency disorder such as X-linked recessive inheritance?
I found that my kids are sensitive to strep A and kids who have this condition are as well.
Great questions! I'm posting two videos to answer them all.
MTHFR alone is not enough information. examine the full methylation pathway, inflammation pathway including CTLA4 and DRD2, most importantly IL5 as it pertains to viral susceptibility
@@rianovercash1263Look into the SLC19A3, SLC19A2, and TPK1. they are associated with issues in the basal ganglia, which is part of PANS.
Please help me im 37 and having still.concurrent throat and ear sensitiviy/ inflammation. I was on a section 2 for "mental health" im tired of demeaning rhetoric. How do I contact you? If needed and should be able to afford private consultation.
sorry for the delayed reply - I'm just seeing this now. eastcoastnaturopathic@gmail.com is the best way to reach me
Do you have any experience giving the S. salivarius K12 probiotic? Seems like a good option for kids who are specifically triggered by Strep A.
Also are you finding Monolaurin effective at all as a natural antibiotic, antiviral and anti microbial? Dr. Steven Phillips mentioned using it a ton in his practice.
Hi! How can I get ahold of you for treatment?
Please email eastcoastnaturopathic@gmail.com and they'll coordinate everything :)
Is this similar to resilience homeopathy?
I'm not sure what resilience homeopathy is. The closest form of homeopathy to LDI is isopathic therapy...but it's still very different.
Is this considered a form of homeotherapy?
video reply is on the way!
Where can we get this treatment?
you have to find a clinician who uses it. Most of us mention it on our websites. To my knowledge, there is no central database of clinicians who use it. I wish there was one, though!
Do you treat by telemed? I’m in Nee Jersey
My 3 year old granddaughter I and her mom really feel she has Pans and in a worse way. We do know they have been exposed to mold and while my daughter was pregnant with her child she was also exposed to mold. Our little girl has severe OCD, can have very mean streaks where she hits her mom and won’t listen to anything you say and becomes so out of control and rarely wants to eat, you swear she was starving her self but Mama keeps trying to make her eat. This problem has been so intense that it is very hard for anyone to function with these things going on. She also doesn’t sleep well, but when she is not having the flares she is just a little sweetheart, I know she can’t help that she has that, her mom is trying all kinds of remedies to help her, she has no doctor that even understands what pans is, they actually probably think the mother is exaggerating, the story and only wanting attention because when she takes her little girl to the doctors, the child behaves very well so it kind of makes it look like the mom is crazy. Which is wish there was someone we could turn to that could help us because it’s really getting out of hand, I wish doctors know more about it. We live in Minnesota. If you know anyone that can help her could you please let me know? Thank you so much for your information.
I'm sorry to hear about this - what a tough situation. Many clinician offer long-distance consultation services. If you folks would like to work with me, my front desk email is eastcoastnaturopathic@gmail.com Dr. Jill Crista ND does long distance consultations, too - she is an amazing mold illness and PANDAS/PANS expert.
@halifaxnaturopathicdoctor6227
Thank you. We do follow Dr Crista and have one of her books, I will email you.
Can you link research?
No, sorry - I post these videos as a hobby, so no time to list citations :)
What is your email or number? My son may have PANS. Please help.
Please help me im 37 and having still.concurrent throat and ear sensitiviy/ inflammation. I was on a section 2 for "mental health" im tired of demeaning rhetoric. How do I contact you? If needed and should be able to afford private consultation.
sorry for the delayed reply - I'm just seeing this now. eastcoastnaturopathic@gmail.com is the best way to reach me