Jesse

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About Jesse

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  1. Very interesting, I'm not familiar with LEMS, I'll look into it. CellTrend is doable with a good doc. Their customer service is good and the results came back relatively quickly. FWIW I took some midodrine today (A1 agonist) and my HR / BP remained steady standing.
  2. Thanks Natops I have a correction to make. Just found out today that my insurance did in fact cover CellTrend, which totally shocks me since they're technically a research lab and based in Germany. I think any lab requires a doctor's note regardless of insurance coverage. I have been doing 4 months of IVIG at increasing doses (up to 105g now). I would love to try plasmapheresis, but haven't found a doctor / hospital willing to do it. The drugs I listed are mostly OTC, and are all A1 agonists (vasoconstrictors), which relate to the autoantibody CellTrend found. Immunosuppression may be my next stop, though the risks are concerning. I've not had the Paraneoplastic Panel, that sounds worth looking into.
  3. That's right, no insurance pays and yes a doctor's script is required. I'd recommend an integrative medicine doctor, though some GPs may be willing as well.
  4. Yes I live in America, sent the sample internationally I tested positive for only A1. M4 was "at risk" but not positive
  5. TL;DR Could alpha-1 agonists help me regain functionality? I have POTS and documented alpha-1 adrenergic receptor autoantibodies. ---------------- Hi all, I'm new here, from Los Angeles. It's great to see so many intelligent people posting. I had a flu-like illness back in December and have been disabled with a set of debilitation symptoms since then. I was very active and independent 30 year old man and now I live with family and cannot work. Metoprolol, high dose IVIG, earthing sheet, neurofeedback therapy, LDN, and various supplements have been of marginal help. I'm considering trailing some of the following alpha-1 agonists to see if they help: Butchers broom (herbal) Midodrine (antihypotensive) Phenylephrine (decongestant) Cirazoline (vasoconstrictor) Methoxamine (vasoconstrictor) Synephrine (mild vasoconstrictor) Etilefrine (antihypotensive) Metaraminol (antihypotensive) Naphazoline (decongestant) Oxymetazoline (decongestant) Pseudoephedrine (decongestant) Tetrahydrozoline (decongestant) Xylometazoline (decongestant) Has anyone with a similar profile to me tried any of these and gotten restored functionality? Have any of these worked longer term? My current symptoms include: Disabling physical fatigue and low stamina / exercise intolerance Physical weakness and malaise High heart rate on standing Breathlessness w/ exertion Dizziness Lightheadedness on standing Brain fog / cognitive dysfunction Light sleep High volume urination Anxiety / depression / irritability Symptoms which more or less gone away: Chest pain Mild sore throat Muscle pain Labs / tests: TTT revealed increase in HR from ~45 resting to ~75 standing. BP normal and steady Elevated alpha-1 adrenergic antibodies (tested through CellTrend) Elevated proinflammatory cytokines IL6, INFy, TNFa (have decreased) Evidence of Coxsackie B4 virus antibodies Low ADH Krebs cycle metabolite imbalances