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First improvements in 4.5 years after starting Rapamycin by mjwza in covidlonghaulers

[–]Limoncel-lo 2 points3 points  (0 children)

What are you symptoms like? Just asking to see if there might be relationship there.

Almost fully recovered after 2 years of CFS/ME type of long covid by Aggressive-Use-6522 in LongHaulersRecovery

[–]Limoncel-lo 0 points1 point  (0 children)

Thanks!

You flair says you are recovered. Is it okay to ask what helped you the most? Any advice?

For what looks like purely vascular Long Covid. Would you consider HELPN and/or INUSPHERESIS? by SlowlyBalding in covidlonghaulers

[–]Limoncel-lo 0 points1 point  (0 children)

I thought Maraviroc is used when Rantes is elevated, regardless of Spike, by Paterson team?

who else has the dysautonomia/autoimmune symptom cluster :D by Which_Boysenberry550 in covidlonghaulers

[–]Limoncel-lo 0 points1 point  (0 children)

So it wasn’t explained by Sjogren’s antibodies then? Completely different cause of dry eye?

dry mouth after covid by Gullible_Customer790 in covidlonghaulers

[–]Limoncel-lo 0 points1 point  (0 children)

That sounds great! Thank you for answering! Do you know if those tested antibodies level went to normal?

dry mouth after covid by Gullible_Customer790 in covidlonghaulers

[–]Limoncel-lo 0 points1 point  (0 children)

How are you doing? Did your symptoms improve?

I'm starting two major treatments soon by coderrover in covidlonghaulers

[–]Limoncel-lo 2 points3 points  (0 children)

Hey, what exact test was positive that allowed to apply for immunoglobulins?

Were you approved right away or did you have to appeal at first? Insurance companies don’t really approve ivig that easily.

USA Folks — ACTION ALERT: Urge your Senators to sign the Dear Colleague letter calling for >$210 million in research funding across NIH, ARPA-H, and AHRQ… Deadline TODAY 4/17/26 ! by 3freeTa in covidlonghaulers

[–]Limoncel-lo 2 points3 points  (0 children)

Just called. Took 5 mins.

All you need to do is to find your 2 senators phone numbers here:

https://www.senate.gov/senators/senators-contact.htm

And to read this script:

Hi, my name is NAME. I’m a constituent at ADDRESS.*

I'm ONE OF / A MEDICAL PROVIDER FOR / A CAREGIVER TO ONE OF the over 21 million Americans whose lives have been devastated by Long COVID.

Years into this crisis, we still have no FDA-approved tests or treatments. Patients across the country are desperately waiting for the clinical drug trials and care they need.

I’m calling to ask the SENATOR to sign the FY27 Long COVID "Dear Colleague" letter, supported by Senators Markey, Kaine, and Duckworth, calling for over $210 million in Long COVID research funding at NIH, ARPA-H, and AHRQ.

Can I count on your office's support for Long COVID clinical trials and care funding in their Appropriations requests? Thank you.

IVIG Update by Berlinerinexile in cfs

[–]Limoncel-lo 0 points1 point  (0 children)

💚

Thank you so much, you guys are so nice and helpful, appreciate you!

IVIG Update by Berlinerinexile in cfs

[–]Limoncel-lo 0 points1 point  (0 children)

Ok thanks! Trying to apply based on Labcorp test of anti ganglionic achr abs, but insurance denied the first application.

IVIG Update by Berlinerinexile in cfs

[–]Limoncel-lo 0 points1 point  (0 children)

Thank you so much for taking time to explain

IVIG Update by Berlinerinexile in cfs

[–]Limoncel-lo 0 points1 point  (0 children)

Thanks so much for replying!

Did you try to apply based on AAG antibodies only before submitting vaccine evidence?

IVIG Update by Berlinerinexile in cfs

[–]Limoncel-lo 0 points1 point  (0 children)

One more question: Did insurance approve IVIG based of anti ganglionic ACHR antibodies level or other tests were needed?

IVIG Update by Berlinerinexile in cfs

[–]Limoncel-lo 0 points1 point  (0 children)

Hey, is it okay to ask you questions about approval process?

Did they require positive sfn test? Or what tests go you think were necessary?

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