p8d
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Status Updates posted by p8d
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Hi,
Your recent post about people dropping out of your life really resonated with me. I am 59 years old and would be happy to communicate via email if you like. I have hyperadregenic dysautonomia (OH, tachy, supine HTN), autoimmune disease and I am probably missing a few! I have been sick since 2014 after a viral illness.
Patti
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Hi Kim,
I don’t want to post this publicly so I thought I would send you this in a message.
I started LDN at 1mg increasing by 1mg/week and got to 3mg/day for a couple of weeks before stopping for a week before and after my second Covid vaccine. I am titrating back up 1mg/week and just hit 3mg/day yesterday. My max dose is 4mg/day. I did get insomnia and weird dreams after starting for about a week and after increasing the dose for a couple of days but it’s had an amazing, and I mean amazing effect on my autoimmune and dysautonomia symptoms. Once I hit 3mg/day for a couple of weeks it brought me out of an AI flare that had been going on for 6 weeks and it’s stabilized my BP like north has ever. My BP after being upright for several minutes is around 125/80 HR around 70-80s and sitting reclined is around 138/80 HR 60s. I don’t know if it’s helping with fatigue which is my biggest problem at the moment because I haven’t gone anywhere and haven’t done much in several months. I am also on SCIG and Plaquenil but my theory is that the LDN crosses the blood brain barrier and works on neuro inflammation and maybe the CNS (I react better to CNS meds). My cardio NP was not at all surprised by the stabilizing effects (neurologist prescribed LDN they are in the same system/clinic) and said many of her patients have reported the same thing. My advice is get a lower dose, 6mg is too high. Start slow and titrating up. If you have a Dr that will prescribe it I would think they will send it to a compounding pharmacy for you.