posted
Day two of stopping Rifampin, due to severe herx or allergic reaction. I feel like I set myself all the way back to square one again. Have a constant feeling of vertigo...feels like im falling off a cliff.
My ankles, wrists are so sore and hurting that I can barely walk, type etc. I was walking 35 min a day before I took the rifampin now I cant walk without crying from pain. Will I go back to my prior "normal".
I had to stop my doxy and zith too because I got so anxious at night that I was losing it. I felt my body needed a complete break from everything.
Im so discouraged and not sure.....what to do now? How long does it take to get back to prior state when u stop a med?
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
So sorry Jennifer70, I wish I had some advise for you. Other than maybe detox for a few days and then start back up very slowly? I am sure you will not be back to square one. I have heard many who back down when needed. We don't need heroes here. {{ Hugs }}
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
I took Rifampin for about a week and seriously thought I was dying. I went off it and it took me at least a week to feel more "myself" again (whatever that is anymore lol). I hope that you will start feeling better soon. Rifampin was a tough one.
Posts: 76 | From IL | Registered: Oct 2010
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posted
ok thanks, i guess just needed to hear that this isnt permanant. It feels like it is. Feel like giving up on everything now...Im just tired of it. I don't know how some people fight for years.....it's only been six months and I'm so weary lately.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
If it is an allergic reaction or drug reaction, yea, you gotta stop, but if a herx (sounds like a herx to me) you gotta push through, and the herxes don't last forever.
Posts: 641 | From Nevada | Registered: May 2009
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posted
There was no way I could push through that herx...i felt like i was dying, I've herxed pretty badly before but nothing even close to that...it was getting progressivly worse and I was scared of where it was headed.
I dont know if I can treat bart if it's going to be this hard on my body. There has to be a less painful way to do this.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
Jennifer70, I was in the exact same position as you and I think you did the right thing. We aren't super human and have to listen to our bodies when it is too much. My husband just admitted the other day that he thought I was going to die from it too Were you on the full dosage? My Dr started me on the full amount right off the bat. Because of my strong reaction and it actually bringing out even more Bart symptoms we are confident that I do have Bart (I didn't test pos.)
I will have to go after it again, but in the meantime I am increasing my seizure meds (it interacted with them so that was one of my issues) and I will start on as low as a dosage as possible and slowly ramp up. SO scared to even think about it again, but really would like to kick the Bart symptoms at the same time.
Posts: 76 | From IL | Registered: Oct 2010
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posted
I had an awful reaction to rifampin too!!! will never go near that drug again too!it caused such a bad herx from hell and might have caused my blood to colagulate and ended up with a bad clot in my arm i put the pic in...now i cant do iv... very awful drug! it might have brought out babesia in me.. i HATE Rifampin!
Posts: 50 | From nyc | Registered: Aug 2009
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posted
APMOM.....I wasn't on the full dosage yet, I started out once a day, by day four I was a mess and wanted to check myself into a hospital.
My LLMD said to stop give my body time to calm down, then restart once a day every other day. I am still not fully recovered yet, but I may try once more after I get back to a level ground. I've been off it for a few days now and today is the first day I can feel a difference, the heavy feeling is gone and I dont feel like Im falling off a cliff today.
Im afraid of going back on it too....but I really want this bart gone, the anxiety has taken years from me, and I want to get on with my life. I've barely left the house in three years.
Sky I don't blame you, that sounds horrible. I'll be praying for you all!
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I loved Rifampin. But I was on 3 others rotating 2/2 a week... Worked great for me...
If I had a bad reaction I would switch to something else for a few days and then go back to it and it always seemed to be ok then...
But the first yr. was h$^^...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had a hard time with Rifampin but pressed on. After three months I had made no progress and decided to switch meds. I used Bactrim DS and biaxin (later changing to zithro).
That combo got rid of the rest of my bart symptoms allowing the babesia to emerge! Knock on wood the bart is really gone and not just waiting for the revolving door to allow it to come on stage again.
I made the mistake with Bactrim of pulsing it when I was feeling better. That is when I got sick again and the babesia came out full force.
The most effective drug is supposed to be levaquin, then rifampin but I found Bactrim to be the most tolerable. I started at 1/8 tablet (working up) in case I had sulfa sensitivity, as I had hives when I was young from a sulfa drug. I did fine.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
My instructions for starting rifampin: Take rifampin at 300 mg once a day. If I herx, stop and let the herx subside then go back on it at once a day. When I'm comfortable with it, start taking it twice a day
Posts: 258 | From Spokane, WA | Registered: Oct 2008
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posted
thanks everyone, I think I'll try again when I feel up to it. Im still feeling it. But it's getting a little better.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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