Amanda Goodhart

Disabled Holistic RN, certified biomed research assistant, long hauler, and mom to 7yo LH & PANS/PANDA. Allergies: Medical Gaslighting. Reaction: Grit & Drive.

[Amanda Goodhart @NurseGoodhart]

@LongCovidKids. I worked with @sunsopeningband to make this school PEM action plan. https://t.co/pAlmIBNM6c & https://t.co/tdOhISXrMB

[Jess @MeetJess]

40% of affected healthcare workers had long covid, and a quarter still had symptoms after a year https://t.co/xlJ0gBwpak

[Amanda Goodhart @NurseGoodhart]

@Luke_Tera @grok Thank you. I am fighting for the testing for 3betaHSD for me and my son. Out ACTH stim tests support it or some other novel defect. Thank you for looking on grok for me. I have read some but am not in a position to do it right now. (Long COVID mecfs PEM long term crash.)

[Stella Chadwick | Functional Medicine @stella_chadwick]

There is something going on in your child’s mouth that no throat swab will ever pick up, and you can see it in the sink tonight.

The gum is one cell thick where it meets the tooth. When the gum is inflamed it bleeds, and every time it bleeds the bacteria in the plaque go into the blood.

The immune system does exactly what it should. It finds them and responds.

In PANS and PANDAS, that response is the problem. Twice a day, every day, at the gum line, it is being kept switched on.

Tonight:

✔️Look in the sink when they spit. Pink means the gum line is open.

✔️Look at the gum edge where it meets the tooth. Red, puffy or shiny is inflamed. Healthy is pale pink and tight.

✔️Notice if they sleep with their mouth open. A dry mouth makes it worse.

✔️Book a check before term starts, ideally with a holistic or biological dentist.

Tell whoever is managing their flares.

🔄 Share this post. There is a parent who needs to read it before their child’s next flare.

#PANDAS #PANSAwareness #BackToSchool #OralHealth

[Amanda Goodhart @NurseGoodhart]

@amyrochlin @NYMag @TheCut For my son strep was just strep, until after COVID. Now strep became PANDAS. But not until COVID caused long COVID and PANS.

[Amanda Goodhart @NurseGoodhart]

@CounsellingSam I stopped shaving when I stopped catering to men's expectations of what my body should be like.

[Amanda Goodhart @NurseGoodhart]

@chydorina Curious if you believe some can radical rest themselves out of ME to where they can gain benefits from slow intentional exercise (not GET). I've seen self reports of this with long COVID with PEM, in people who were sick longer than 6 months.

[Amanda Goodhart @NurseGoodhart]

Ahem

[Brain Inflammation Collaborative @BrainInflCollab]

A new study by researchers at Amsterdam University more precisely characterized the differences in muscle physiology between individuals with post-exertional malaise (PEM) and healthy controls.

Here is what they found...🧵

[Danilo.Buonsenso_Surf4Children @surf4children]

I feel the emotion of this mum but I hope you can feel my emotions as well. A relatively young MD and researcher, no major positions, starting alone the #longcovid in kids journey, almost none in the world trusting me not even colleague friends, probably judged on my back, now seeing more and more kids coming back to life all over the world since more and more major academic institutions all over the world are trusting my ideas.
grateful

[Amanda Goodhart @NurseGoodhart]

@_wej01 Read the book Burned Haystack Dating Method to weed out these losers from the beginning.

[ThePOTSPostman @ThePOTSPostman]

I love when people ask what triggered the flare.

Excellent question.

The current suspects include weather, sleep, food, movement, stress, existing and possibly the moon.

[Amanda Goodhart @NurseGoodhart]

@chydorina Mine are worse. And so are my 9yo son's. They started going crazy at the same time, along with elevated AST and ALT. I think this a stage in the long COVID disease process? Nothing else has changed but IVIG and I'm 6 months ahead of him in that.

[Amanda Goodhart @NurseGoodhart]

@Gmwetz My dysautonomia & MCAS were better during pregnancy and after, until I stopped breastfeeding. Then it was worse than it had ever been.

[Amanda Goodhart @NurseGoodhart]

@DrMichaelScoma Common denominator is often hereditary alphatryptasemia.

[Amanda Goodhart @NurseGoodhart]

@polybioRF Exclusion criteria please? I'm tired of being turned away.

[Amanda Goodhart @NurseGoodhart]

@ThePOTSPostman The amount of crazy tricks I do for people posted for hEDS on the internet. 🤦🤪 But yes the answer is four easy.

[PolyBio @polybioRF]

Said Dr. Resia Pretorius on differentiating microclot components between Long COVID, ME/CFS and POTS: “If we can understand the protein content associated with these amyloidygenic molecules, we think we might be able to identify, in that [insoluble plasma] fraction, proteins that we can target.

“In this proteomics analysis specifically, we are finding a lot of post-translational modifications. We are finding molecules suggesting there’s complement activation, neutrophil activation… If you really deep dive into the sequence of the peptides of the proteins in the structures, then a whole new world opens up.” 1/

https://t.co/a42nEf48JC

[Amanda Goodhart @NurseGoodhart]

@longcovidlabs Also consider that many are taking anticholinergics for post-covid MCAS.

[Amanda Goodhart @NurseGoodhart]

@longcovidlabs Also phosphatidylcholine supplements.