CIDP Warrior

Taking on United Healthcare for denials of medically necessary medications to treat CIDP

[Mike Levin @MikeLevin]

This is really stupid, and it’s not getting enough attention.

The Trump administration is pulling a working $368 million ocean monitoring system out of the water, equipment taxpayers already bought, built, and sank into the deep ocean.

And they are doing it right when the oceans are behaving in ways that alarm the scientists who study them.

Record-breaking temperatures.

A system of Atlantic currents that may be lurching toward collapse.

The response?

Yank out the instruments and walk away.

That is not budgeting. That is smashing the gauges while the engine is on fire and calling it efficiency.

For what? The Trump administration dressed it up as a “nimbler approach” and “smart lifecycle management,” which is fancy nonsense for “we shut it off and hoped nobody would ask why.” There is no return-on-investment analysis. They cannot show taxpayers save a dime, because the gear is already paid for and the science it produces protects real money and real lives.

The kicker: the same people killing the monitors want to mine the deep sea for minerals. So they are destroying the only tools that could measure what that mining does. That is not an accident.

That is the point. You cannot see the damage if you break the instruments first.
https://t.co/MzE4AW1QBv

[CIDP Warrior @CIDPwarrior]

@MrsCMFrancis I start my mornings with 30g of protein within the first 30 min of waking up. When I can’t stomach another protein shake I substitute it with Perfect Aminos.

[CIDP Warrior @CIDPwarrior]

@surf4children @ImmunoFever Yes please, we need more treatment pathways.

[The Green Dragon Tavern @greendragonhq]

Family wealth generated while holding office.

We are not angry enough about this.

[CIDP Warrior @CIDPwarrior]

@atrupar The reason there are no claims is because no one can find an in-network PCP and they can’t afford their deductible keeping this insurance for in case of an emergency.

[CIDP Warrior @CIDPwarrior]

@CoffeeBlackMD @H2KMFer Omg the chips that used to be sold! I once ate too many, it only took once.

[Amanda Decker FNP-C, MHP, CKNS @deckerlesscarbs]

I own a direct primary care clinic, clients choose to see me because of the level of care that I give them. I will help them use insurance for medications, testing and other needs. Recently @TRICARE , the insurance for those that served our country, denied 2 different medication authorizations. Not because they would not cover the medication, but because the request did not come from a Tricare network provider.
Our veterans and active military deserve the opportunity to choose how and from whom they get care. If they meet criteria for a medication or a test, it should be granted it.
@DeptVetAffairs this is a step backwards in care of those who gave so much for us.
#veteran #healthcare #directprimarycare
@KenDBerryMD

[CIDP Warrior @CIDPwarrior]

@VanceE A 6 day supply of daily Cialis is stupid for $59 dollars which means 6 pills so $10 per pill. Patients seen at our direct primary care office receive over 1000 generic meds for free and Cialis one of them! You are overpaying for care, get yourself a DPC membership.

[Mike Levin @MikeLevin]

Follow the money on this one. It is rotten to the core.

The Pentagon just lent $620,000,000 to a tiny North Carolina startup called Vulcan Elements. The company is two years old.

It had fewer than 50 employees.

And three months before the deal was announced, Donald Trump Jr.’s venture firm quietly took a stake in it.

Here is the part the administration tried to bury.

Of the dozens of companies the Pentagon was weighing, Vulcan was the only deal initiated by a top White House aide. That aide was Peter Navarro, a close friend of Trump Jr. The order came down to move fast.

One official put it plainly: The call came from the White House. We have to get this done.

Staff worked late nights to push it through in weeks. Deals like this normally take many months of vetting. And when it closed, Vulcan’s valuation jumped from about 200 million dollars to roughly 2 billion.

A windfall for the investors, including the president’s son.

This is public money. Your money.

Routed through the Pentagon to enrich the president’s family and their friends. The Bush administration’s own chief ethics lawyer called it corruption we pay for.

And there is more coming.

A drone parts company Trump Jr. holds a stake in is also under Pentagon review.

This is not a one-off. It is a pattern. The president’s family is treating the federal Treasury like a private bank, and the bill lands on every taxpayer.

https://t.co/4kB1cZNmlE

[CIDP Warrior @CIDPwarrior]

@JudyandHuahua @surf4children We adding in the HCQ to deal with underlying fatigue. It helped to further reduce my inflammation.

[𝓔𝓶 ♡ @emkenobi]

Republicans in North Carolina just proposed a bill that says if a woman is caught with an IUD or attempts to get an abortion then men are allowed to use DEADLY FORCE to try and stop her. They are proposing a bill that will allow men to kill women for using birth control. It’s House Bill 1232. Keith Kidwell is the Republican who proposed the bill. He claims it counts as self defense to use deadly force to stop abortion. This is a man who claims to be pro life. Feel free to give his office a call and let him know how you feel about his opinion.

And for anyone who says “obviously this will never get passed” that’s not the point. The point is it’s fucking insanity that a government official would even try to make a law like this. It’s insanity that there are men out there who are trying to make it legal to kill women for making decisions for their own bodies. This is real and it’s happening right now in front of our eyes.

[CIDP Warrior @CIDPwarrior]

@ahandvanish @patientled This could be why some with LC benefit from the use of a GLP. We know they have an off label use in hormone regulation as well as metabolic signaling.

[Furkan Gözükara @FurkanGozukara]

🚨 BREAKING: ProPublica reporter Robert Faturechi confirms the White House directly intervened to force the Pentagon to give a record-breaking loan to a startup just 3 months after Don Jr. invested in it.

The Trump administration is looting the country!

[Jarett & Lilly @1JLVSTW]

😂😂😂

[TheAzAdvocate @TheAzadvocate]

I warned Lamb after he surfaced in my story in 2019 that I would drag his sorry ass across our nation. I would work 24/7 non stop against him and what I know he covered for in my face. The women in the article came to me for help and I did everything I could. Tammy Peacock begged me for help trusting me with her story and evidence living in fear of Mark Lamb. Unfortunately, Tammy died living in fear of him and the retaliation he threw at her abusing PCSO. I vowed to her family that I would spend every day throwing a fit until he’s dragged to a cage and fed to inmates. He covered for a crime in my face failing my children. He’s compromised a bad guy made him his bitch.
No political seat will save him from what’s here.
He’s corrupted, throw it away Az.

[Team Talarico @TeamTalaricoHQ]

The family of a child who was repeatedly raped by a man who Ken Paxton let off with no new jail time is speaking out:

“The fact that Attorney General Ken Paxton allowed this man to get away with molesting and sexually abusing [our] son for three years is completely disqualifying.

Adam Hoffman could have faced life in prison. Instead, Ken Paxton and his office offered him a deal that kept him off the sex-offender registry and included no new jail time.”

[Manuel Ruiz @manruipa]

⚠️‼️In just 24 hours, hope for real treatment for Long COVID has moved forward.

For years, some of us have been pointing to the same pieces of the puzzle.

✅ Herpesvirus reactivations are part of the symptom-driving process in a subgroup
✅ Hypocortisolemia / secondary adrenal insufficiency exists in a subset of patients
✅ Autoimmunity is present in Long COVID, including anti-GPCR antibodies

And yesterday I highlighted again two ideas we have already discussed in previous papers and posts, which now seem even more relevant:

✅ A relevant subgroup of Long COVID / ME/CFS may fit anti-GPCR autoimmunity, especially autonomic and parasympathetic dysfunction
✅ Deep B-cell depletion / immune reset is starting to look like one of the most promising treatment directions

What is still missing?

⬜ To prove which susceptible ancestral HLA-II haplotypes are behind the loss of tolerance and autoimmune subgroups
⬜ To prove whether B-cell reset with CAR-T, like the approach that has already induced remission in lupus, can also become an effective treatment for Long COVID and ME/CFS

That is why this matters so much.

We are no longer just talking about vague “dysregulation.”
We are starting to see a much clearer model:

-persistent antigen / viral reactivation
-immune dysfunction
-autoimmune subgroups
-autonomic and endocrine subgroups
-and, hopefully, targeted immune-reset therapies

This is the first time in a long while that it feels like the field is moving from description toward actionable treatment logic.

That gives me hope.

Below I’m adding the posts I shared yesterday, because they connect directly to what is now being reinforced.

Save this post and let’s revisit it in a few years.

[CIDP Warrior @CIDPwarrior]

@VirusesImmunity The issue will still be getting IVIG approved for Long Covid. High dose steroids are not a long term option. I wonder if this is also a driver of POTs like symptoms along with neurological symptoms?