posted
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?
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
posted
up
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Geo - Are you still on Rifampin? How are you feeling?
Is anyone currently taking Rifampin and feeling better?
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
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!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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?
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
posted
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
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I did have a nasty herx reaction on rifampin but stuck with it; in the end, I think it really helped!
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
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.
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
| IP: Logged |
posted
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.
-------------------- LC 7.09 IGG66,41,39 +ve IGM 41,23 +ve 9.09 Fry's and Igenex were -ve 6 mo ABX LC 4.10 IGG66,39,18 +ve IGM -ve Posts: 73 | From Usa | Registered: Aug 2010
| IP: Logged |
posted
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.
Posts: 125 | From New York | Registered: Oct 2000
| IP: Logged |
posted
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.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
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."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
posted
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.
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic