If I can ask and have anything today would it please be prayers?
I'm having a nightmare of a herx from the Rifabutin. Never had one this bad before and some symptoms are new. Yes I should be happy and relieved because I know this means the abx is working for the Bartonella.
This is day 3 now.
Thank you all 💚💚💚
Posted by Lymetoo (Member # 743) on :
Day 3-4 is always the worst! If you HAVE TO, you can always skip a day to give yourself a break. This is not medical advice.
Praying for you now!!
Posted by Mountainsky (Member # 51857) on :
How much longer? I am so scared
Posted by Bartenderbonnie (Member # 49177) on :
Oh no, I feel so sorry for you Mountainsky. Absolutely brutal symptoms during the killing phase. Are you alone? Can someone stay with you?
DO NOT THINK YOU ARE A FAILURE IF YOU STOP TREATMENT. We all have stopped treatment a one point. Listen to your body. Baby your body. Try not to stress, Breathe, Relax, Ride it out.
Epsom salt baths and Xanax is what got me through.
I know you probably don’t feel like reading right now but it’s comforting to know others have gone through the same thing and come through the other end.
In case you need to go to the E.R., not to scare you but to prepare you, most E.R.docs are clueless when it comes to herx’s. So please print this out for the E.R.doc. It simply states no steroids and supportive fluids are the treatment. https://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/137831?#000000
I’m sending healing prayers that this shall pass quickly. You can do this Mountainsky.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Bartenderbonnie:
DO NOT THINK YOU ARE A FAILURE IF YOU STOP TREATMENT. We all have stopped treatment a one point. Listen to your body. Baby your body. Try not to stress, Breathe, Relax, Ride it out.
Yeah, it can go on and on. So call your doctor if you need to.
Posted by Mountainsky (Member # 51857) on :
An update. On day 9 now.
My temp and chills are gone. Headaches come and go. Just extremely exhausted with bad body aches still. They seem to be worse in the morning, esp in my legs.
Im still working and pushing through the day. As soon as I get home I go right to bed.
I had chest pain yesterday but I attributed it to the anxiety I was having.
This med is no joke but praying it's the answer. Thanks again everyone for reaching out. 💚
Posted by Lymetoo (Member # 743) on :
Awesome!! Thanks for checking in with us!!
Posted by Mountainsky (Member # 51857) on :
Thanks. The exhaustion is still there like I said and the body pain, that still stinks. I've still been sleeping a ton when I'm home.
One thing I noticed too I'll eat, no matter how much or small and I get full so quick. 10 minutes later I'm absolutely starting, like I haven't eaten in days. Very uncomfortable feeling.
Putting all my energy into working. My coworkers have been extremely supportive, I couldn't ask for a better team.
Posted by bcb1200 (Member # 25745) on :
Warning: Make sure it is a Herx. When I took Rifabutin years ago I had what I thought was a herx with fever and sweats.
TUrns out the drug made my WBC plummet to near zero (a known side effect.)
I would call your LLMD and make sure they know and maybe ask for some bloodwork.
Posted by Mountainsky (Member # 51857) on :
It subsided after a week.
This drug is my very lost hope nothing else has worked. I refuse to come off it.
Posted by bcb1200 (Member # 25745) on :
Nah...there is always another protocol.
My LLMD (the very well known Dr. M. out of CT) is seeing tremendous gains in Bart patients using Methylene Blue and with some herbs and/or Zith.
I wouldn't touch Rifabutin with a 10' pole. It works but completely kills your adrenals and WBC and those can make you feel worse than Bart.
** edited initial of first name of LLMD, per LN rules**