rifampin question

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tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/24/2018 3:17 PM (GMT -6)   
Hi everyone, so I thought I was slowly coming out of my last very bad neurological flare, but today is so incredibly bad again! The pain in my neck and head is so awful, the pins and needles in my feet and hands comes and goes which I can deal with but the head and neck is so badsad. I saw my llmd on Thursday and I was doing a little bit better then, so he really wants me to start Rifampin. I'm just so scared! It's been 3 horrible weeks of head/neck, anxiety and panic, spine pain, pins and needles (especially intense at times in my feet). I also have a area on my thumb that has been there for quite awhile, it's by the nail very red and swollen and sore, it's been super inflamed the last couple days, I have no idea if that is related to Lyme or co. I feel so lost and so depressed! Do you think I should just start the Rifampin and hope that it doesn't bring me down even more, or should I wait? We had plans to go on family trip for my kids Spring break which starts next weekend, I so badly want to feel better so we don't have to cancel! Why is this disease so cruel!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 3/24/2018 3:49 PM (GMT -6)   
You could take another couple days off...

Although:
It's not a given that you will feel a lot worse starting the rifampin.
You are starting lower dose? or going ahead with the 300 twice daily right away?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/24/2018 5:04 PM (GMT -6)   
I think if I start it I will do what you did and split it in half. My llmd told me not to do it, in fact he said to make sure i do one pill and then the other 12hrs or less apart so resistance doesnt happen, but i think if i start with the whole 300 i will be very panicked!! My head and neck are sooooo bad!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 3/24/2018 5:13 PM (GMT -6)   
Or an alternative is to take the entire dose...but just pulse it for a week or two ...M/W/F

I mean that's what LL Dr. J prescribes.

And you're on the doxy full dose now, right?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/24/2018 7:50 PM (GMT -6)   
Just 200mg a day of doxy right now. Do you think one dose of rifampin could cause a herx? Maybe I should just do it, not tonight but tomorrow. UGHH! Why does this have to be so hard?!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 3/24/2018 11:41 PM (GMT -6)   
tonyaraven said...
Just 200mg a day of doxy right now. Do you think one dose of rifampin could cause a herx? Maybe I should just do it, not tonight but tomorrow. UGHH! Why does this have to be so hard?!!



I think if you've decided you're going to treat with antibiotics, then you need to at some point just 'do it'.
The stress alone could impact you negatively...if you're that worried about it..

People warned me about Rifampin - that it might hit bart hard...and cause a bad herx...that my liver could suffer...but I don't remember it being that bad in the first few weeks - but I did start lower after I was already taking minocycline for a month.
It had no bad effects on my liver enzymes.

Have you got a solid detox regimen going?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/25/2018 8:10 AM (GMT -6)   
Yes, the constant worrying I'm doing about starting will totally make it worse! I need to get over it and just do it and try to stay positive that it will help me. Did your llmd say it was ok to split the 300 in half when you started or did you just do it on your own? I don't fully understand why mine doesn't want me to do that, he knows how incredibly sensitive I am! I'm going to start today and have the mind set that it is going to be the best thing for my treatment and I'm going to get better...it's so much easier typing that then actually believing it!!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32652
   Posted 3/25/2018 9:33 AM (GMT -6)   
Well my LLND told me to start with half dose of 300 mg per day and then increase to 300 twice per day after a few weeks. (I thing 3-4 weeks)
I decided on my own to do 150 mg for several days first (I can’t remember exactly how many days - I think it was a week - I’d have to check my notes)

And it’s supposed to be taken on empty stomach. I would take it first, wait awhile and then take my mino and then eat - I couldn’t do the mino on an empty gut.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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