running wild said...
Bicillin shots of 2.4 mu (twice a week) were the primary reason I went into a 1.5 year remission in 2015-2016. I had tried everything, including pic line, to no avail.
In 2016 I had to have an aortic valve replaced, which was a long surgery and left me with pain in my right shoulder for weeks. I didn't sleep much, and my theory is my immune system was already down from the surgery, then the lack of sleep led to a complete crash. That probably opened things up to EBV and co-infections. Haven't felt good since.
I have been taking shots of 1.2 mu every five days now, and I notice I feel better for a day or two after each shot. But with EBV and hwo knows what else in picture, the Bicillin hasn't done too much to help, especially at half the dose. That is not to dispute the immune system thoughts Solaris mentioned. Just maybe too much in play now for Bcillin to change much.
The good news, though, is it did make a difference back in 2015 to the point I was able to stop shots, coach back in college, endure heavy travel and stress. So so hoping same goes for you.
How long did it take for the 2.4 bi-weekly to get you to remission?
How long have you been doing the 1.2/every 5 days for? And do you mind sharing your weight? I’m 125lbs - I originally did a few weeks at the 600k dose back in 2018 and after 2 months went to 1.2M and was in remission shortly after. Symptoms came back while weaning down to shots every other week. Ended up treating with orals again for another year for Babs and Bart when it it was probably just pandas/immune dysfunction. I would love to do the 2.4 even with the cost, But I’ll need my LLMD to agree.
I’m hoping that by going to 1.2M every 5 days will get me back on track since once a week had me symptom free since mid Feb until 4 weeks ago.
I was about
to return to work 6/1 and with the pandemic and the birth of my son in Feb I crashed the night before and felt really sick for a couple days, then have been dealing with the symptoms ever since. I went back to work on the 15th but the psych (anxiety, irritability, transient depression) and autonomic (pots, fatigue) symptoms remain. I should have let a few more shots be taken to see if the symptoms were transient before I Tried Ceftin for 8-9 days at the recommendation of my LLMD - but I don’t think orals are the solution. It’s either Bicillin, Iv rocephin, or IVIG.
Anyways I did my first shot after a brief break on Sat and am getting the first 5 day shot this afternoon.