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Chronic Advocate
Registrace 10. 11. 2012
I am a 21 year old disability advocate who uses this channel to talk about PANDAS/PANS, Lyme, Tourette's, Autism, and Chronic illness. I hope you find something here that helps!
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Useful links :
Ticcers Unite Website: www.ticcersunite.com
PANS PANDAS UK:
www.panspandasuk.org/
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Useful links :
Ticcers Unite Website: www.ticcersunite.com
PANS PANDAS UK:
www.panspandasuk.org/
Are Private Clinics "Cashing In" On False Lyme Diagnoses? (read caption)
I share my perspective on this topic as someone who got overseas testing for Lyme and has been to private Lyme clinics. Studies are underway to try and create a more accurate mainstream Lyme test, as the one used by the NHS and by hospitals in America only has a 50% accuracy rate.
The NHS doesn;t diagnose of treat chronic Lyme despite 700 peer-reviewed studies and articles showing that Lyme and co-infections can persist despite antibiotics. ILADS document showing references to over 700 articles: www.ilads.org/.../uploads/2018/07/CLDList-ILADS.pdf
The NHS (and doctors in mainstream American Hospitals following outdated IDSA guidelines) as to deflect responsibility and save money by saying we all have ME/CFS as they do not want to be sued for not treating people.
The NHS doesn;t diagnose of treat chronic Lyme despite 700 peer-reviewed studies and articles showing that Lyme and co-infections can persist despite antibiotics. ILADS document showing references to over 700 articles: www.ilads.org/.../uploads/2018/07/CLDList-ILADS.pdf
The NHS (and doctors in mainstream American Hospitals following outdated IDSA guidelines) as to deflect responsibility and save money by saying we all have ME/CFS as they do not want to be sued for not treating people.
zhlédnutí: 152
Video
OCD Not Responding To ERP/CBT? Factors To Consider
zhlédnutí 157Před 2 měsíci
CBT/ERP is the gold standard therapy for OCD, working well for around 80% of people. However, not everyone is lucky enough to respond to this. Tourettic OCD, PANDAS/PANS, Autism, and Delusions may cause a person to have to an atypical OCD experience, and therefore need atypical treatment. It is vital that practitioners distinguish between intrusive thoughts and mental tics as they ARE different...
PANS Symptoms Not Improving Long-term? Factors To Consider
zhlédnutí 226Před 3 měsíci
PANS/PANDAS is usually treated with antibiotics, IVIG, anti-inflammatories, and in severe cases - Plasmapheresis. What do you do though if these interventions don't bring long term relief? This video explains some factors to consider if these treatments aren't working so well long-term. Disclaimer: I am NOT a medical professional, this is NOT to be used as a substitute for diagnosis or treatmen...
POTS Awareness Merch Unboxing - Health Harbors
zhlédnutí 167Před 4 měsíci
The shop: www.etsy.com/shop/healthharbors/?etsrc=sdt POTsie Princess Bag: www.etsy.com/uk/listing/1659842428/potsie-princess-tote-bag-pots-syndrome?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=potsie princess&ref=sc_gallery-1-3&plkey=75fd5e7269305e9b00a3b4e38458ebe1398ec3c5:1659842428
It Isn't Always Just A "Different Way Of Being"... Neurodiversity Terminology Talk
zhlédnutí 307Před 5 měsíci
I am different, that's obvious, however I do not agree with the erasure of the term "condition". My Tourette's is certainly a condition, that sometimes requires medical management to keep me safe. I don't think it is natural to involuntarily injure yourself and I don't think that can be celebrated either. Of course though, there are aspects of TS and other neurodivergent conditions that can be ...
The Medical System Wasn't Designed For Chronically Ill People
zhlédnutí 199Před 5 měsíci
In this video I talk about how the conventional medical system ignores root causes, neglects chronically ill people, gaslights many people, doesn't look for systemic issues enough, and why some people choose functional medicine. I am a 21 year old with POTS, PANS, Tourette's and likely Lyme. I've seen many different doctors throughout my life and these are issues I have noticed within the medic...
The Negative Aspects Of My Autism Diagnosis (With PANS & Tourette’s)
zhlédnutí 248Před 6 měsíci
An Autism diagnosis is a blessing for a lot of people as it gives them the answers they need, gives them the ability to request accommodations, and gives them the ability to understand themselves. However, the stigma and negative attitudes around Autism can lead to some negatives - such as medical gaslighting, medical neglect, and assumptions being made about an individual based on their diagno...
My Experience In Mainstream School With Tourette’s, Autism, & OCD
zhlédnutí 399Před 7 měsíci
In this video I talk about my time between year 6 - year 11 in mainstream school with Tourette Syndrome, Autism, and OCD. Useful Links: My TEDx Talk: czcams.com/video/9am9UvZksRw/video.html My Buymeacoffee page: www.buymeacoffee.com/ticcersunite Ticcers Unite Website: www.ticcersunite.com/ The Autism Workbook For Teenagers: www.amazon.co.uk/Autism-Workbook-Teenagers-Improving-self-esteem/dp/B0C...
Sensory Office Room Tour | How It Accommodates My Neurodivergent Needs
zhlédnutí 262Před 8 měsíci
Sensory Office Room Tour | How It Accommodates My Neurodivergent Needs
Why You Should Listen To Neurodivergent People Over The Self-Proclaimed "Specialist" Doctors
zhlédnutí 314Před 9 měsíci
Why You Should Listen To Neurodivergent People Over The Self-Proclaimed "Specialist" Doctors
Why Behavioral Modification "Therapies" Didn't Help | Rages & Defiance in Tourette’s & PANS
zhlédnutí 210Před 9 měsíci
Why Behavioral Modification "Therapies" Didn't Help | Rages & Defiance in Tourette’s & PANS
Purple Toes?! What Is POTS & Why Is It So Often Misdiagnosed As Anxiety?
zhlédnutí 447Před 10 měsíci
Purple Toes?! What Is POTS & Why Is It So Often Misdiagnosed As Anxiety?
What You NEED TO KNOW About Lyme Disease & Co
zhlédnutí 454Před rokem
What You NEED TO KNOW About Lyme Disease & Co
Tourette's VS PANDAS/PANS | The Differences
zhlédnutí 1,1KPřed rokem
Tourette's VS PANDAS/PANS | The Differences
Reacting To My First TEDx Application From Age 16 (Cringe)
zhlédnutí 197Před rokem
Reacting To My First TEDx Application From Age 16 (Cringe)
Getting An MRI Scan With Tourette's | What It Was Like
zhlédnutí 559Před rokem
Getting An MRI Scan With Tourette's | What It Was Like
Reacting To My Childhood YouTube Videos (I Was A 10 Year Old YouTuber)
zhlédnutí 206Před rokem
Reacting To My Childhood CZcams Videos (I Was A 10 Year Old CZcamsr)
Responding To Hate Comments & Funny Comments
zhlédnutí 251Před rokem
Responding To Hate Comments & Funny Comments
Ableism: Thoughts From A Disabled Young Adult
zhlédnutí 368Před rokem
Ableism: Thoughts From A Disabled Young Adult
Does Meditating To Weightless By Marconi Union Decrease Blood Pressure In Neurodivergent People?
zhlédnutí 208Před rokem
Does Meditating To Weightless By Marconi Union Decrease Blood Pressure In Neurodivergent People?
How Being Autistic Helped Me With Public Speaking
zhlédnutí 236Před rokem
How Being Autistic Helped Me With Public Speaking
My Chronic Illness & Disability Support Tools
zhlédnutí 525Před rokem
My Chronic Illness & Disability Support Tools
Stop Pressuring Autistic People To Act Neurotypical (unless a life or death situation)
zhlédnutí 338Před rokem
Stop Pressuring Autistic People To Act Neurotypical (unless a life or death situation)
"We Know You Can't Control It BUT" | Tourette’s Discrimination In Public
zhlédnutí 764Před rokem
"We Know You Can't Control It BUT" | Tourette’s Discrimination In Public
Ticcer Responds To "Guy With Real Tourette’s" Reacting To Tics & Roses 🌹
zhlédnutí 1,4KPřed rokem
Ticcer Responds To "Guy With Real Tourette’s" Reacting To Tics & Roses 🌹
Rage Attacks | What You Need To Know (PANS/PANDAS & Tourette’s)
zhlédnutí 1,2KPřed rokem
Rage Attacks | What You Need To Know (PANS/PANDAS & Tourette’s)
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 ❤ 🙏
Thank you for addressing this!
Like the nice vibe
I have autism level 1
Hi, I wanted to apologize, I was not aware of anything I was saying and was projecting my negativity onto other people. Completely on me and it was out of line. I apologize
Guess what though? Autism isn’t an excuse for being rude. Autism isn’t an excuse to be an asshole. I’m kind of tired of seeing people cover for aspies that are just assholes
I agree - I have been abused by other Autistic people, however sometimes it's just a human mistake and the autistic person needs things explained to them rather than being demonised for something they're not even aware they did.
Autism isn't an excuse for abuse especially if the persons already been told, but at the same time if its something unintentional and you haven't told the person why that's harmful or its something that isn't really harmful or abusive like not making eye contact then that's not the same thing at all.
I must have watched a reel that mentioned tourettes, and decided to try and get a quick better understanding as to the causes/why. Did learn then about coprolalia. Enjoyed your video to help me better understand it, and how it relates to tourettes.
I have Anxiety I bite my finger but I try not to bite my finger that is not and use my chew necklace to get some more chewing Toys 🧸
Even harder for a single mom having to work and keep a special needs daughter happy without even thinking about herself at all… 😢😢
I am going to get one since I keep biting my nails
Psych meds caused me permanent POTS
these people who suffer from this health issue. need to try the Aquacure AC50 device.
I have tourret syndrom and autism spectrom
👍👍👍👍👌👌👌👌💖💖💖💖💖💖💖💖
Thank you so much for this wealth of information. :)
omg i have one,they are really good,especially with people with autism,sensory issues and stuff like that.just make sure to wash them regularly
I love how they fed off eachother
I started to experience tics with PNES. Thank you for sharing this knowledge with us all ❤
I have them and are getting diagonosed hopefully Friday
for those wondering what it is about then, the answer is simply, it feels kinda like an itch
I bought one today because I'm literally destroying my lips with the biting
These seem good for me bc I have adhd.
I have adhd too and for me regular fidgets work well if you haven't tried!
you speak so well and articulately on all of this! could you maybe do some vlog-type videos on the channel?
the most aesthetic rave i’ve ever seen😂👍🏻
❤
I have TS but im trying to show my new friend what it is but so many people fake it but this is real tysm for spreading awareness ❤❤
What are the infections you have
Lyme Disease, throat infections triggered flares also and the Lyme specialist said I might have Borrelia Miyamotoi.
Ldn works on ocd for myself but not much for my pain
If ive got pans i must have had it 40 years untreated but son has same ocd atb13
Your videos are great so alike with autism and symptoms ive had and have
Where us inherited metabolic dr in uk
metabolicsupportuk.org/information/metabolic-centres-in-the-uk/
Pans mcas must be related with cirs
Did the crappy NHS test pick up your Lyme
I didn't get the NHS test as I heard about the low accuracy rate so I just got Armin testing
Autism comes with ill health alot due to mcas i think
Great video Courtney Snyder is good on these things holistic dr
Neurologist says my chronic upper body pain is migraine i dint have normal migraines since 2017 rhumo says its fybromyalgia huh
Ive liiked at neurosthenia and it was mostly folks with autism who have it diagnosed by dr beard who also had autism yes costs lot money for us whete are you going for mitrichondral function test
Have you got fybromyalgia CFS in your family to lost my mum to severe ms obvously linked to autism heds as autism folk get more auto immune
You should look into Lyme - it can run in families (Congenital Lyme - Infection spread through placenta) and can cause symptoms identical to MS including brain lesions and is also often misdiagnosed as Fibromyalgia or ME. I have family members with traits of those things but it is all Lyme.
@@ChronicAdvocateArmen clinic the best? Some say it's all the autism causing neuroinflamtion do you have muscle pain it would have to be natural treatments for me as antibiotics make me highly depressed to
Mostly only autistic folk i can get on with but alas took until 43 to get diagnosed my sins now diagnosed to
My grandfather was diagnosed 1930 s though wasnt called Asperger's then scxzoid personality disorders
Ldn helps ocd and fatigue but not oain for me
My ocd is genetic started at 3 sane as my mum my grandfather his mum.and grandmother all hypermobile all autism
PANS is also genetic mine started at 3 also
@@ChronicAdvocatedid it start with a infection though to be pans my son's started exact same time
@@ChronicAdvocatealso worth noting uf i take antibiotics which i havnt un 29 years my OCD anxiety goes manic
I have heds cfs fybromyalgia yeaes decades grew up in farm i have autism adhd to lost my mum.ti severe ms heds my father had cfs niw ok 30 years later
I'm so sorry that sounds horrible
@@ChronicAdvocate thankyou do you have pain daily
Spot on. Very tragic.
Why would I "see things" from a wrong point of view. Like ive always said, theres whats right and whats wrong. Ive learned whats right, anything aside from that is wrong.
It is important though to try and see things from another's point of view even if you are convinced it is wrong, and if you can't at least acknowledge that the individual has the right to have their own view as long as it isn't harmful as constantly having your views criticised, debated, or be made to feel like you aren't allowed to have your own views can destroy someone's self-esteem.
@ChronicAdvocate they are allowed to have whatever wrong belief they want. I won't assault or kidnap them to force them to become smarter. But I'm not going to accept something wrong. If someone tries to tell me pedophilia is right I'm not going to see their point of view.
I've tried medication for 1 whole year and it didn't do anything for my condition. I've read various reports, studies and articles, it seems the a majority of people don't seem to benefit much, if at all for medication. I've tried some supplements, which seem to briefly have positive effects, but they always seem to eventually wear off, maybe it like my body becomes used to magnesium or b12 and I no longer can reap the benefits. I do find cutting down caffeine, Sugar and processed food do help alot. Less screen time and video games I also find seem to help alot, which suck because I am addicted to video games and having tourettes makes me very unsociable so it's one of the few true joys. Also no matter what I do or eat Stress always sets of my tics, and it's my main frustration as life in general is naturally stressful for everyone. I am holding out hope that these wrist devices for tourettes currently in development come out soon. As they seem to really help the patients.
The willows toys crystal is a great necklace! I have the grey and white one and people keep mistaking it for marble or glass. Especially since I have it on a metal necklace. It’s the most discreet chew necklace!