janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
Hi. Been having horrible herx on rif. Been on this for three months. Almost symptom free for the last month. Since yesterday have been so sore with muscle soreness. I wanna cry. Help would be appreciated.
posted
janice i am having a hard time on rifampin too but i hope that you and i can both perservere! i think we have to knuckle through as best we can. if you need to vent or chat im here. good luck. love, jess
Posts: 651 | From ct | Registered: Sep 2011
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janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
Morning . Still off with headache etc. I just don't understand how I could plummet so quickly . I guess meds must be reall working?
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Rifampin is from hell. I just took a break yesterday. There comes a time when you say you can't do it. You've felt better before, it can happen again.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
What are your Docs saying Rifampin will be treating? Which bacteria?
They added that to mine just now and I have to get it from pharmacy.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
I herxed pretty good on Rifampin when I started it, then I started to feel pretty good, then I went bad. My LLMD said some people get toxic from it as it builds up in the system, I was one of them. It took me a few weeks of being off it before I started to feel good again. I thought for sure it was hitting something but it wasn't it was just side effects. Best to you. R
Posts: 845 | From Northeast | Registered: May 2011
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janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
Hi . Llmd said rif is for the Bart. I cut back last night to half the rif dosage . Still wonder if it's not erlichia coming out. The symptom seem different. It's muscle soreness, I have a minor fever.
Althought from, what I have read on here says rif can be miserable. I wonder why after three months on rif did this happen.
Last time this happened the babs was gone and the Bart started coming out. Any thoughts would be great.
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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posted
Me too, it was muscle and bone pain. That's how I felt too that the symptoms were different. It could be side effects for you too. R
Posts: 845 | From Northeast | Registered: May 2011
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posted
Is anyone using Welchol to bind toxins in gut so they are not reabsorbed?
Maybe soemthing is being excreted and reabsorbed and making you feel more sick...?
We used Welchol here, I think it helped, my kid could tell if she missed a dose. After that, she was really careful to take it on time.
Welchol is a prescription drug described in Burrascano's "Advanced Topics in Lyme Disease", 16th edition.
It is constipating, so be sure to drink lots of water and eat a clean high fiber diet.
It's labeled use is for reducing cholesterol by binding it in the gut so it can't be reabsorbed. It does the same with other things.
Drinking alot of filtered water also helped her feel less sick.
Rifampin (p.o.) was like a magic pill for my kid. She felt better when it was started. But it wasn't started until later in treatment. We assumed that Borrelia and Babesia had been redcued and we were working on Bartonella.
About 4 weeks after starting Rifampin (also on azith and plaq), her headache went way for the first time since getting sick. It marked the start of her first good period.
She had Borrelia, Babesia, Bartonella.
It seemed like first Borrelia was targeted, then Babesia, then Bartonella.
She was pain free and getting stronger for about 2.5 months.
We tried backing off abx.
Full relapse within a week.
Oddly, when we tried to return to the Rifampin/azith/plaq protocol, it didn't work the second time.
a third combination (bactrim, doxy, tinda) was set that did work to get her into the second good period.
LLMD thought the rapid relapse period pointed more to Bartonella rather than Borrelia.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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posted
Are you on just rifampin? It's only used, afaik, for bart. It's not for lyme or any of the other co-infections.
What usually happens with rifampin is that you herx badly the first week or so, then it's not so bad. Over time the rifampin becomes less effective, especially when taken by itself.
If you've been on rifampin for 3 weeks its effectiveness could be wearing off. More likely, you felt bad from the herx and then lyme or something multiplied.
Ask your llmd about other infections and other antibiotics - sure sounds like you've got something else going on.
Posts: 146 | From Maine | Registered: Aug 2011
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First herx on Rifampin, I literally though I was going to die.
Second herx on Rifampin, I was banging my head on the table and wall for 3 days because the pain in my sinuses and upper jaw (teeth) was that unberable. I am not kidding.
The only advice I have is hang in there it will go away, it will get better.
I wish I did rifampin at the beginning of my treatment, it was a game changer for me.
The only herx comperable to rifampin herx was one on Claforan.
Good luck.
Posts: 191 | From va | Registered: Sep 2008
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