Raising awareness about PANS - PANDAS - AE - BGE
Joined December 2020
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Whenever you feel lonely, remember that your white blood cells are fighting like this for your health..
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New study offers clues about long COVID’s brain symptoms
Problems like brain fog and fatigue are common among long-COVID patients, and the findings point to changes in the brain’s dopamine system.
Read more: bit.ly/4fjAlxV
ALT Woman appearing tired with her hand to her face.
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NIH: Immune system may attack nervous system in some Long COVID patients
“Our study now shows that if you are in a subgroup of Long COVID patients who have autoantibodies circulating...a quantifiable sign that you may be a good candidate for these drugs"
nih.gov/news-events/nih-rese…
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Morning all, just a note to say that I will be deleting this account later this weekend.
Everything is good and I genuinely think that I’m very close to being able to see my Boy again. However, I think that’s best done in private.
I remain committed to raising awareness of this awful condition and I will continue to do that in my own way, as well as to keep raising funds for the amazing charity PANS PANDAS UK. However, I feel that using my Son’s story to do that is not my choice any more, especially as he continues his journey back to normal life.
The last 6 years have been difficult and there’s been many low points and times where I didn’t think we would get him back or I would ever see him again.
However, you’ve all kept me going with your support, advice, kindness and involvement and for that I am very grateful. At times it felt like all I had and you will never know how important it was to me. I’ve met some incredible people on here and been humbled by your own strength and bravery with all you have been through. Keep going please. Keep being nice on here and kind to each other, it really makes a difference.
Thank you all and I love you Son ❤️
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This was 8 months ago 😊
If she hadn’t been dx with B12 deficiency (privately) she’d still be in a wheelchair & permanently disabled.
The haematologist said he is seeing more cases of B12 def. especially in children since Covid 😔.
How many more have been misdiagnosed ? 😭
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Psychologizing diseases with complex underlying mechanisms that demand more medical attention than ever has become a serious problem in healthcare.
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If your child regressed and you were told to just accept it, please don’t.
There are a dozen reasons a child loses skills. Immune, gut, mitochondrial, metabolic. The least likely one of all is that this is simply who they are.
And that is the one you get handed.
No. Not acceptable. There is a reason it happened, so go and find it, and don’t stop until you do.
I’ve written about all of it in this month’s Autism Eye.
#Autism #AutismAwareness #FunctionalMedicine
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Herpes reactivation is a critically important issue that many clinicians still ignore. I hope HHV-7 will be one of the next viruses seriously investigated. When HHV-7 antibodies were found in my daughter’s CFS workup, my colleagues dismissed them as an “innocent” finding and said they could not possibly explain her 50 to 100 daily focal seizures. After I started valacyclovir, the seizures “magically” stopped.
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Hearing a lot lately about stubborn #mycoplasma causing neuropsychiatric symptoms, usually a co infection with Lyme etc? Not ourselves thankfully, but quite a few others. Can come along with strep but very resistant.
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He couldn’t, he was too ill. He changed over night aged 9 due to PANS PANDAS. He suddenly became unable to do anything he did before including washing, dressing or leaving the house. Took him over 5 years to start to come back into the World.
A recent study found that 0.49% of the brain mass analyzed was microplastic. Here are the results from an alarming new report.
NIH scientists reported a 50% increase in microplastics in the brain from 2016 to 2024. These microplastics are plastics 5 mm or less in size and can enter the body from:
- air
- food and water
- plastic packaging
- synthetic clothing
- industrial liquid waste
The amount of microplastics was roughly 10 times higher in the brain than in the liver.
Matthew Campen, NIH toxicologist and co-author, said the amount of plastics his team found in the brain samples was more than he "ever would have imagined or been comfortable with."
According to Martin Wagner a toxicologist from the Norwegian University, these microplastics can be proinflammatory: "[Microplastics] provoke an inflammatory immune system response designed to get rid of them, just as the body would fight bacteria—only the microplastics can’t be destroyed so they trigger chronic inflammation."(1)
The study also reported higher microplastic levels in the brains of deceased patients with dementia.
Could microplastics be partly to blame for the rise in neuroinflammatory conditions, mental health issues, and dementia?
Let us know your thoughts by leaving a comment below.
Citation:
1. Microplastics are harming our health. Here's how to reduce your risk | Fortune Well
Full study here: nature.com/articles/s41591-0…
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Physicians wishing to submit a case for consideration may do so at neuroimmune.org/panel-consul… (at least four weeks prior to the scheduled meeting).
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Our community caregivers, clinicians, and those with lived experience have a chance to be heard and make a real impact by participating in this important PANS/PANDAS research survey.
Please consider taking a few minutes and sharing with others. 💚
#PANS #PANDAS #ResearchStudy
