Long COVID with POTS, MCAS and heart and joint pain, much better after SCIG

Condition

Long COVID

At worst

Moderate (mostly housebound)

Ill before improving or writing

5.5 years

Last post

Jul 2026

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What they tried

Approaches: Alternative therapies · Anticoagulants · Beta-blockers · Biologics & antibodies · Other drugs and medicines

Their path

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.

Adverse events

• Propranolol (Inderal)“Also just another thing to note, I have personally had weird interactions between propranolol and Ativan, so that could be something to look into. Both drugs have caused internal vibrations for me. Took me awhile to figure out propranolol was an issue.” In context ↗ Side effects
• Albuterol / salbutamol (Ventolin), Hormonal birth control (unspecified)“I didn’t have any issues with Ativan until a med combo of birth control and albuterol fucked my nervous system.” In context ↗ Made symptoms worse
• Lorazepam (Ativan)“Recently came off, wd was hell.” In context ↗ Withdrawal problems
• Lorazepam (Ativan)“At my worst I was pretty close to suicide.” In context ↗ Suicidal thoughts or attempt
• Propranolol (Inderal)“I felt like propranolol induced more PEM for me in general but that med did mesh well for me. I was constantly fatigued and in a fucking fog.” In context ↗ Made symptoms worse
• Lorazepam (Ativan)“I was on Ativan .5 for 2 years and had to come off because I reached tolerance, started experiencing interval withdrawals, and paradoxical effects.” In context ↗ Side effects
• “I tried DMARDS, they didn’t help or made my pain worse.” In context ↗ Made symptoms worse
• “MTX gave me awful side effects” In context ↗ Side effects
• Adalimumab (Humira)“and so far I seem to be having an abnormal reaction to humira.” In context ↗ Side effects
• Acupuncture“I have told my acupuncturist that some points have made me more anxious and she made note to take different approach.” In context ↗ Mood or psychiatric effects
• Adalimumab (Humira)“The first time I injected I thought it wasn’t going to work bc I got heart palps and chest pain and a temporary worsening of symptoms for two days.” In context ↗ Made symptoms worse
• Probiotics and fermented foods“For whatever reason it made my gerd worse, caused way more indigestion, and gave my abdominal pain. Stopped it after 3 weeks.” In context ↗ Gut side effects
• Albuterol / salbutamol (Ventolin)“It started off just as general SOB, aggravated by propranolol, but then exploded when I tried albuterol.” In context ↗ Made symptoms worse
• Steroid inhalers (inhaled corticosteroids)“This is the exact route I am taking because I cannot tolerate steroid inhalers.” In context ↗ Side effects
• Lumbrokinase“I have pots and Lumbrokinase makes my heart race.” In context ↗ Side effects
• “I have done it and it decreased my baseline and made my pots significantly worse, that was almost a year ago.” In context ↗ Made symptoms worse
• Propranolol (Inderal)“When I came off them it was rough for my physical pots symptoms but also had a massive increase in anxiety.” In context ↗ Withdrawal problems
• Propranolol (Inderal)“Nope. Just couldn’t tolerate beta blockers after two years on them” In context ↗ Side effects
• Omalizumab / Xolair“I’ve also tried Xolair and while it helped my pots bc it reduced histamine and vasodilation, it made my MCAS drastically worse. I lost safe foods each time I took a new dose for 6 months.” In context ↗ Made symptoms worse
• Adalimumab (Humira), Dupilumab (Dupixent)“I tried dupixent, did not interact well with my humira weirdly.” In context ↗ Side effects

Symptoms mentioned

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