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Those taking or have taken Rifampin with success: question(s)
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Girlie
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Joined : May 2014
Posts : 48577
Posted 9/30/2015 11:01 AM (GMT -5)
Sorry - more questions:
I am on Rif and mino. Taking 300 mg Rif twice daily.
Took a few weeks to get to the full dose.
Due to herxing I have had to cut back to once daily every 4 or 5 days.And one day I didn't take any.
I only need to do that once and then the herx subsides.
I am concerned about
resistance. I do feel the Rif is helping so don't want to ruin a good thing.
Questions:
- Did you take a day off here or there during treatment? And did you have improvement and after how long of treatment?
- or, did you just cut back to half dose when herxing, and did you improve?
- Did you just push through the herxing - maintained the full dose and the herxing subsided with detoxing.
I haven't tried pushing through - I have upped my detox as I had gotten lax when I was on the abx break...but am still not sure I should push through - the detoxing helps somewhat, but if I don't feel enough relief by the time it's time to take it again, I either skip it or take half dose.
Your thoughts?
I am worried about
abx resistance - as bart is different than lyme...
But I really don't know if it's a valid concern.
tickbite666
Veteran Member
Joined : Mar 2014
Posts : 2145
Posted 9/30/2015 12:04 PM (GMT -5)
I would recommend to cut back to half dose vs stopping thru a herx. I recall reading somewhere not to pulse Rif.
I'm a plow thru person from the no pain, no gain days. My second round of Rif with plaq/mino combo was hell for first 8 to 10 weeks, then improvements were noticed. You need to decide what works best for you so you can still function.
Girlie
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Posts : 48577
Posted 9/30/2015 12:44 PM (GMT -5)
I am having a bad herx day every 4 days or so...so I guess you could say it's hellish. I've been taking Mino for about
6 weeks now.
Update: Just had my LLND appt.
He told me to 'push thru' my herxes...he wants me to take a different curcumin supplement now to help with the inflammation/pain.
I told him I was taking Rif with food because it was causing phlegm in the back of my throat and some esophageal burning.
He told me he'd like me to take it on an empty stomach. I had read that if you need to take with food to take with non-fat and non-protein...so I asked if I could do that. He told me to get some DGL and some aloe vera juice and try one or both - 15 minutes before rifampin.
If that doesn't work, then to take with a small amount of carbohydrates. He said it has to do with stomach acid...
He was very pleased that my liver enzymes are the best they've been since starting treatment...that's his main concern at the moment...that they stay there.
I asked him about
adding back the Buhner herbs..and he agreed that I should wait until I stabilize on the Rifampin - and he also said that the herbs could add to the liver enzyme issue...and he really wants to see those stay down.
Girlie
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Posted 9/30/2015 12:47 PM (GMT -5)
I don't mind having a few non-functional days...if it proves to be effective....I guess I'm just worried that I will get in a situation where the herx will be continuing on indefinitely.
My LLND said just because I'm herxing...not to assume that it will go on endlessly and keep building.
jrpsf
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Joined : Aug 2014
Posts : 1762
Posted 9/30/2015 1:36 PM (GMT -5)
Have you ever read this?
www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/
As your die off decreases so will the potency of the herx. The more you stick with it the better it will get and the better you will get.
By backing off your prolonging your pain and you know that the next day when you start up again it's going to be awful again. That's not really giving you relief since you have the mental expectation weighing on your shoulders.
Dangle the proverbial carrot.
CD3764
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Posts : 4512
Posted 9/30/2015 1:43 PM (GMT -5)
Girlie
I believe I remember you saying that you take milk thistle.
Well, Buhner recommends doses as high as 800-1200mg/day.
I'm not suggesting you go that high with your dose but perhaps consider increasing it.
Going from 1 capsule to 2 daily is what helped get my liver enzymes back into range the one time they became elevated.
lymie mom x 2
Regular Member
Joined : Jan 2015
Posts : 439
Posted 9/30/2015 2:18 PM (GMT -5)
Girlie-
First, the milk thistle...I would ask your LLMD about
this because I have read in several places that MT and Rifampin together are not a good idea, but in the end it is individualized choices.
Second- I think I have mentioned to you before that I am also on Rifampin. I had horrible herxing at 450mgs and had to go back down to the lowest dose for a few days to come out of it, but I never stopped for the same resistance fear you have.
Also, I took Mino for two weeks along with the Rifampin for a suspected UTI and kidney pain. I did not notice much of a difference in my twitching and shivers by adding this in...BUT...due to the strange bite and subsequent rash I had last week, I have added in Doxy at the lowest possible dose so far (I have to be outside with my kids and the weather here is still warm and sunny) and I have noticed a decrease in the muscle twitching and shivers and it has only been a few days.
I am considering increasing either the Doxy (100mgs day) or Rifampin (300 mgs a day) because I have been chugging along pretty well with improvements and no other herx symptoms except mild fatigue and irritability. I figure maybe the bacterial load is decreased enough at this point that I can add more and see what I get. But I am kind of the opposite of you, I would rather not deal with the herx at all! lol! My husband travels for work and I have both kids and all their activities...I don't want to be the grumpy, tired mommy all the time with them.
Anyway, just thought I would mention to you the differences I saw with Mino+Rifampin vs Doxy+Rifampin if that is an option for you at some point.
Girlie
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Posts : 48577
Posted 9/30/2015 2:39 PM (GMT -5)
jrpsf - When I'm not herxing, I get brave, confident...and think, I'll just push through the next herx...but then it hits...and I'm like a baby...it's the end of the world...I have something else besides lyme...and I'm going to die...and I'm googling like a crazy woman.
But, I am going to try and push through my next herx...and see what happens...I have been better with my detoxing again.
CD - I do take milk thistle and I also take Pekana apo-HEPAT - and my last two sets of liver enzymes were all in range...and the last one was even better - even though I had been on Rif for over a month.
They were the best I've had in over a year...go figure!
Lymie mom - I do remember something about
MT and Rifampin - I think there was even a thread on it..I'll do a search and see if I can find it.
Re: mino vs doxy. I requested the mino because I really wanted it for the good blood/brain barrier penetration - and it worked - well something worked...as my head pressure behind my eyes is mostly gone...and light-headedness, off-balance is much improved since taking mino.
Plus, I hadn't been on it before. I was on doxy when I first tested positive for lyme - for a month - stopped because of sun-sensitivity. But, it is definitely an option down the road...if I want/need to change it up.
Girlie
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Joined : May 2014
Posts : 48577
Posted 9/30/2015 2:40 PM (GMT -5)
Tickbite and Lymie mom (and anyone else who has been on Rif) - did you take on empty stomach? If so, any issues?
tickbite666
Veteran Member
Joined : Mar 2014
Posts : 2145
Posted 9/30/2015 3:04 PM (GMT -5)
Girlie,
I took all my abx on empty stomach first thing in am and again at 6pm before supper on weekdays. Weekends were less precise and sometimes my evening abx were after dinner if we ate out early. During my second rif protocol I do recall several episodes of vomiting soon after am dose, most likely herx related or due to introducing mino or doxy into the combo.
I don't have my daily sx charts and medical journal with me at the office, I'll try to double check tonight. I kept good records.
The only time I forced myself to eat was when taking Mepro eating some fats for absorption.
lymie mom x 2
Regular Member
Joined : Jan 2015
Posts : 439
Posted 9/30/2015 3:05 PM (GMT -5)
Yes, I take Rif on an empty stomach and never had a problem. I do however take Doxy with food because it tends to make me nauseous and hurt my stomach if I don't.
I had been on Doxy for a month prior as well. It was the first thing I was prescribed back in December. Only lasted about
5 weeks before stomach issues caused me to quit. By then, I was able to get into an LLMD and he then put me on Mino for the first time. HUGE emotional herxes with Mino. Depression, sobbing, dark thoughts. I didn't have any the second time around for the 2 weeks, but I went easy on the dosing.
The biggest downside right now with the Doxy & Rif is it caused a nasty yeast infection. I tried several natural approaches including tea tree oil, garlic, coconut oil and nothing has helped. I have been on heavy probiotics twice a day and it still became a problem. I had to resort to Diflucan. This is the first really bad yeast infection I have had since I started treatment last December. I swear some days the candida die off is almost as bad as herxing for lyme & co.
tickbite666
Veteran Member
Joined : Mar 2014
Posts : 2145
Posted 9/30/2015 3:28 PM (GMT -5)
Just remembered another on-line log and med history.
I stated Rif 11/9/13 with 1/2 dose on empty stomach and I was already on zith and plaq. Nausea and vomited several times in am after abx. Took a break, started Prilosac, and then went back and nausea settled down.
2/6/14 changed mino to doxy and nausea and vomiting returned. Tried eating before meds but vomiting would cycle anyway and saw no pattern to eating or not.
By March I was off Rif and things normalized again.
But thru this stretch I saw some of my best improvements from 50% to 75% or more.
It was tough now that I go back and check my notes.
Girlie
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Posts : 48577
Posted 9/30/2015 3:38 PM (GMT -5)
It is best on empty stomach...but if it continues to burn, and cause issues in my esophagus, I will have to take with food. LLND said that would end up damaging my digestive track.
So, I will try aloe vera first...see if that works.
jrpsf
Veteran Member
Joined : Aug 2014
Posts : 1762
Posted 9/30/2015 3:55 PM (GMT -5)
Girlie-You handle herxing like a man.
I hope you find the same humor in that I do.
Girlie
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Posts : 48577
Posted 9/30/2015 4:13 PM (GMT -5)
Jrpsf- lol....yup...I think you're right...this LD has made me a whiney, crybaby.
Yes, I get your humour....
LymePickle
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Joined : Mar 2014
Posts : 2132
Posted 9/30/2015 7:33 PM (GMT -5)
I'd say between the options. Just keep taking the rifampin and herx away. Lol. But really I'm a believer of do what you feel is right for you.
For me personally... I just started the rifampin full dose 600 mg daily. But I did back off on it when I was doing the 600 mg twice daily dosing... There were a few times when I felt my liver burning. So in that case I did actually back down.
Also there were times when I thought Bart WAS getting resistant as I felt the rifampin wasn't working. I was like what the heck! Why are Bart symptoms not improving yet! Still I had a lot of inflammation and burning which I attribute to Bart. But eventually it did go away. So for me personally Bart has not become resistant to my clarithrimycin/rifampin combo. That being said, I have got to the point of no symptoms, and took a small break... Only to start the abx and go back to herxing and feeing like I have a Bart flair up again. So I think steady abx is better for Bart. In my experience stopping is setting myself up for more Bart burning and foot aches... Even though I was symptom free before stopping taking the antibiotic after resuming I get hit by the Bart fire again! So I am going to just try and keep on track.
jrpsf
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Joined : Aug 2014
Posts : 1762
Posted 9/30/2015 7:57 PM (GMT -5)
I'm of the same mindset as LymePickle.
That doesn't mean that I'm not a raving nasty female dog when the herx is beating my detox. There's no getting around how much treatment can suck.
I know I question if the protocol I'm on is doing enough when it doesn't totally suck. Right now I'm on daily IM Invanz and I'm handling that pretty well. Besides the last few hours I've started planning for going into my office a few times a week for a few hours versus only working from home. I can walk out if I need to and get a ride home if I'm really not ok.
I want my life back. Starting LDN tomorrow and Provigil soon after that.
Girlie the combo that made the biggest difference for me was Biaxin Rifampin and Alinia. Pulsing the Alinia. I pulsed the Alinia 3 weeks on, 3 weeks off. It was hell but at the end of the 3 weeks there was such a dramatic difference I was willing to do it again. My LLND said I could pulse 2 days on 2 off. I just went for the 3 weeks and the second round was easy.
Since herxing comes from the die off of your toxin load imo the faster you kill the toxins (obviously within reason) the less time for the bacteria to replicate which equals less toxins. You are going to herx =to the amount if toxins regardless, right? You can take it really slow or grin and bare it and get it over with. It's still going to be the same amount of herx in the long run. You'll just get to the finish line faster.
I don't know if that made any sense...my writing skills and lyme don't go together
Girlie
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Posts : 48577
Posted 10/1/2015 2:07 PM (GMT -5)
Lymepickle - Where are you at now? symptom - free?
jrpsf - Is Alinia for Babesia? Is it anti-malarial?
I know what you mean - I want my life back, too...I don't even remember what it looked like - it's been so long...
I was tempted to ask my Dr. for the biaxin with Rif...but I had already started the mino - for blood/brain barrier penetration in particular - and had been on the biaxin for about
4 months. So, decided to stick with it, even though I was impressed with the Webinar - Dr. M's bart treatment.
If i stall out on the mino/rif combo...I may switch to biaxin...but I'm going to give it 4 months.
What is Provigil - I could google it - just being lazy...lol
Tried LDN - unfortunately it didn't work for me...
Girlie
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Posted 10/1/2015 2:08 PM (GMT -5)
I have decided I will push through my next herx - but hopefully the ramped up detoxing will help with that.
I would back off on meds dose when treating lyme...but I know bart is a different animal and I'm concerned with resistance. I think bart is my dominant infection....time will tell.
Revive
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Joined : Dec 2013
Posts : 1293
Posted 10/2/2015 12:15 PM (GMT -5)
Girlie I never quit taking the rifampin just backed down on the dose for 2 weeks but I did back down on the zithromax and also skipped the weekends plus other days if I was herxing to bad.
I was told not to take milk thistle while on Rifampin if your taking it switch to ALA
Hope your feeling better.
Girlie
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Posts : 48577
Posted 10/2/2015 12:31 PM (GMT -5)
Revive - So you went to 300 mg for a couple weeks? Did you only have to do that once?
Remind me: you did 600 once daily, or 300 twice daily?
I am taking ALA - and this homeopathy support: apoHEPAT - by Pekana.
I have read mixed comments about
Milk thistle. One I read said that it increases the amount of Rif in your system...don't know if that's correct.
How are you doing Revive? Still good with the bee venom therapy?
LymePickle
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Joined : Mar 2014
Posts : 2132
Posted 10/2/2015 3:52 PM (GMT -5)
Girlie I have been symptom free... That being said I was symptom free LAST year this time!!! Yes I'm serious, I was on minocycline + clarithrimycin + SePTRA DS and my kidneys started aching though Lol. Bartonella is tricky! I think one missed dose with Bart and it's back to day one. Yup. So I hate to break it to you, but you missing a dose is like putting yourself back to day 1 in bart treatment, so it means you gotta put your day one of treatment for the "6 months" back to day 1. I know it sounds harsh but that's the truth and the nature of Bart. It happened to me countless times now... Gotta be a trooper that doesn't stop when it comes to Bart. Bart requires CONSISTENT treatment in order to be successful. Me even taking a break for a day or half a day is enough to set back Bart treatment. Sorry if it sounds harsh, but that's been Bart when it comes to my experience and everything I read. Some people just have an immune system that gets at it, other people's immune system can't beat it easily. So yes there are variables from person to person.
Revive
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Posts : 1293
Posted 10/2/2015 5:24 PM (GMT -5)
Had to do 300 for a few weeks cause of herxing so bad. I took it once a day at night, so all at once.
Doing great with the bee venom, even got hubby doing it now and he is herxing a lot but then feel better once he comes out of it. Come and join us, I feel so normal now it's unbelievable.
Girlie
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Posted 10/2/2015 7:45 PM (GMT -5)
Lymepickle - one missed dose and you're back to square one?? ...or one day?
So, I checked my records and I have only missed a day of Rifampin once - and that was almost a month ago. The other times I herxed bad, I went back to once day 300 mg. instead of twice daily...so does that set me back to square 1 - if your theory is correct?
I'm hoping you are wrong and I haven't gone back to square one.
Ahh, revive - gotta admit, it's a little tempting....but I'm scared of bees...any stinging insects...so I'm gonna have to be desperate...we'll see...after I've given the rifampin a good run. I think I stated before...if I don't feel significant improvement by month 3 or 4...I will be pretty upset...so I might have to go to Plan "Bee"...lol
Revive
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Posts : 1293
Posted 10/2/2015 10:50 PM (GMT -5)
Well after 18 months of putting ANX in my system and realizing it was going to take a lot more to do the trick and then you really don't know since I've had it for years. I love not popping all the pills and being on a schedule, I just sting 3 times a week, M, W, F and take the weekend to detox.
Get brave and come join us.
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