Posted 10/5/2021 5:49 PM (GMT -5)
Hey all, hope you are well or at least on your way. Treating for four and a half yesrs. One year iv rocephin, and constant oral abx since. Two years BVT and herbals as well. After my dsf crash I stayed away from the forum. I wasn't in a good place and reading about it all the time was taking its toll. My llmd put me back on dapsone, rifampin, ceftin, azith and Nystatin after things went south on dsf.. I started to improve after about a month. I have had most days out of bed since, not well but not in bed either. I even went four weeks without any major flares so I am making progress. That is by far the longest yet. Still twitching but the violent jerking has really slowed down. I still get dizzy/faint and fell again and busted some ribs in June. Got pretty bad after that for a month or so. Had another seizure like shaking spell about a week after the rib fall. Hurt incredibly bad during it and I almost instantly fell asleep after for 14 hours. So yeah still neurological. Still twitching, joint pain, arms numb/hurt, night sweats, ringing ears, memory issues, heart palpitations (not nearly as bad) and headaches. My rbc is a little low 4.2 and I've been weak and tired lately (more than usual). When I check my O2 level it's between 84&87. I checked it on my wife and son and they were 93 and 97 so I think the sensor is ok. Could this be from the dapsone? I take 15 mg of l methyl folate daily. There was something else(can't remember) llmd wanted me to take with it but not covered and I couldn't afford it so he said take l methyl folate. Thinking of maybe taking a break from dapsone. Started doing iv infusions at my llmd this week. So far just PC but they will add others(can't remember).