I am 2 weeks into Rifampin. My joint pain and tingling/numbness are worse. My guess is this is a herx and is good. Anyone else have similar issues?
Posted by geo (Member # 18333) on :
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Posted by Haley (Member # 22008) on :
Geo - Are you still on Rifampin? How are you feeling?
Is anyone currently taking Rifampin and feeling better?
Posted by 17hens (Member # 23747) on :
I did Rifampin and Zith for 3+ months and felt great on it! The first 3+ weeks were really hard, but after that I loved it! Took me to a new level of healing. The herx is worth it!
Posted by Haley (Member # 22008) on :
Thanks 17 hens. I did 2 weeks about a year ago and felt like I was going to die.
I'm giving it another try but will start with a lower dose this time.
I hope to get through it this time.
What type of herx did you have? What type of reaction?
Posted by Lymetoo (Member # 743) on :
It was horrible for me. Increased brain inflammation/pressure. Had to stop it after 5 days... had a killer 24/7 headache for the next 3 wks.
I hope you continue to feel better while on it!!
Just posting this for those who may need to hear it.
Posted by lyme in Putnam (Member # 11561) on :
After 5 days on it, not even close to the same. I stopped it and am hoping my mind to heal soon. Good luck.
Posted by geo (Member # 18333) on :
Haley - I am still on Rifampin. Joint pain is better but numbness/tingling/stabbing feelings and shooting pains in sole of feet are present - sounds like Bart? Going back to LLMD next week. I can tolerate it and I think it's working
Posted by TN Kim (Member # 26729) on :
Hi, I just started Rifampin. I am on Day 3 and nothing yet.
How long did it take for you to start herxing or feeling better and / or worse?
Thanks!
Posted by Tracy9 (Member # 7521) on :
Rifampin is notorious for the herx from hell. I nicknamed it Back Alley Beating in a Capsule. I've never experienced anything like it in my life nor my six years of Lyme treatment. I'm still on it though and it was worth it. It helped me a great deal!
Posted by Andie333 (Member # 7370) on :
I did have a nasty herx reaction on rifampin but stuck with it; in the end, I think it really helped!
Posted by janice victorov (Member # 22937) on :
Morning, I'm on Cipro but experiencing the same type of herx with increase joint pain/tingling.
I have a killer headache that comes and goes.
I have been drinking tons of water/lemon light food.
Posted by wifegotlyme (Member # 27578) on :
My wife also used it for 5 days. She could not handle it and had to stop as per her LLMD's orders.While she was on Rifmapin she had un bearable air hunger, fevers, headaches and she was not able to get out of the bed. Her LLMD said she is having a reaction to it.
She had to take IV of B12,Magnesium,Vitamin C to get her back.
Posted by eloise (Member # 128) on :
When I first took a Rifampin pill (150 mg), I felt Horrible after about 3 hours. Terrible pain that traveled, horrible anxiety and so on. At first I thought it was a reaction to the medication but it turns out it was a herx.
I told my doctor I wanted to try it again and asked if there was a liquid form. He never heard of one but I researched and compounding pharmacies can make Rifampin in liquid form SO THAT YOU CAN START AT A VERY SMALL DOSE AND INCREASE SLOWLY.
This is what I have done and I started at 25 mg and have worked my way to 135 mg with herxes along the way.
I think I am currently having a Rifampin herx myself. Real exacerbation of my worst neuro symptoms. When I herx, I scale back on the Rifampin but do not stop taking it.
So to those of you who can't handle the full dose, it might be worth inquiring about the compounded liquid form. I get mine from Fallon Pharmacy in Latham (near Albany), NY. It costs more but if it allows you to take the Rifampin, it might be worth it. It is for me.
Posted by anthropisces (Member # 15672) on :
Rifampin = the herx from hell. It sent my left arm into the pain amplifier and left it there for a month and a half. It does seem to have helped though.
Posted by 17hens (Member # 23747) on :
Sorry, Haley, that I did not see your question earlier.
My herx was fatigue, brain fog, head pressure, headaches, and lots of emotional stuff like depression, anxiety, agitation.
I had read on lymenet that it would be a hard herx so I felt prepared. I decided to tackle it and see where it took me. Glad I did.
Over the 4 months (or was it 3?) that I was on rifampin, my foot pain decreased but never went away.
After a few months on Rifampin, I ran out of pills for 8 days (LLMD was on vacation) and symptoms came back with a vengance. Typical Bart.
Went on Cipro and Biaxin for 4 weeks and had a terrible brain herx (that's always the worst kind for me, give me anything but brain stuff) and now I'm on Rifampin again.
Herxing and tough. But I know what this is and that it will pass. I know herxing isn't the goal, isn't necessary to heal, and should actually be avoided when possible. But I also know that Rifampin helps me and if I have to go thru herxing to get better, I will.
I've been taking Acetyl-L-Carnitine for a few weeks, which helps detox ammonia out of the brain/body. I've noticed significant improvement and I recommend it.
The back of the bottle says, "ALC is a naturally occurring form of L-Carnitine, a vitamin-like nutrient synthsized in the body, from the amino acids lysine and methionine. ALC plays a key role in the production of acetylcholine, an important neuro-transmitter for brain and nerve cell function. This product enhances alertness and mental focus."
Posted by pj1954 (Member # 11722) on :
rifampin and cipro are extremely toxic and kill lots of ketes milk thistle and anything else you can do to detox will help with both of these abx if your really hurting look up the reverse latte !
its nasty and gross but works right now and you will feel better, so much so you will most likely be able to continue the med till the script is done.
Posted by coffee71 (Member # 17467) on :
Rifampin has changed the course of my Lyme&company treatment.
It was a pure hell at the begininng = I thought I was going to die during my first rifampin herx. And I am not kidding.
Rifampin gave me my brain back.
Posted by Haley (Member # 22008) on :
This is all good feedback on Rifampin.
I am waiting until after my sleep study on Monday to start this because I know that it effects my sleep.
Also, my brother is getting married soon and I need to be at that wedding. I don't think I'll ramp up to full dose until after the wedding.
Love seeing that you got your brain back, coffee.
If that day ever comes for me I will throw a big ol party!!!