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Starting Rifampin - questions

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Posted 8/13/2015 6:01 PM (GMT 0)
I will be starting Rifampin soon to treat Bart.
It will be added to the Minocycline I have recently started.

I'm planning on starting low - I'll be on 300 mg per day for two weeks...then up to 300 mg twice daily.

Is it still thought that you can't stop and start again...due to possibility of antibiotic resistance? Or is that not believed anymore?

I want to know ahead of time...if I herx...is it okay to back off on the Rifampin for a few days?

I thought I remember someone pulsing Rifampin...

Any information/thoughts is appreciated.
Posted 8/13/2015 8:28 PM (GMT 0)
My doctor has me take 5 days on and 2 days off.

I started with 150 mgs. I'm now up to 450 mgs.
Posted 8/13/2015 9:11 PM (GMT 0)
I would like to start at 150 mg per day...or at least 150 mg twice daily...but my capsules are 300 mg each.

So, that will mean splitting them open...and taking the loose powder. Wonder how that is on the esophagus going down?
Posted 8/14/2015 12:26 AM (GMT 0)
Can you ask your doctor for a script for 150 mg strength?

If not, maybe purchase the gelatin capsules and empty 1/2 into the capsule.
Posted 8/14/2015 1:39 AM (GMT 0)
Good idea Utahgal - I can go to the health food store and get some gelatin capsules...

thanks!
Posted 8/14/2015 1:41 AM (GMT 0)
Utahgal - did you do 150 twice daily, then 150 and 300, and will go to 300 twice daily?

How long did you stay at each level?
Posted 8/14/2015 2:41 AM (GMT 0)
Hi Girlie-

I had completely gone off abx and had to restart again due to bart/neuro like symptoms that came back. I started Rifampin recently at 150 2x a day and noticed a couple of old Bart symptoms (burning feet, sore throat, shin pain) come back but they only lasted a day or so. After several days, I noticed the shivers and muscle twitching thriving again. But worst of all, Rifampin metabolizes thyroid hormones in the body (both natural and synthetic) and I was feeling pretty hypo again.

So, I changed my Rifampin dose to 300 to only once a day and increased my thyroid med dose so that the thyroid meds have more of a chance to circulate in my body before the rifampin is taken later in the day. The shivers and muscle twitching have decreased in intensity, but not frequency. I think I need to get up to 600 per day but not sure if I should do this all in one dose. I have an appt with my LLMD on the 26th, so I will discuss it then.

If you don't have thyroid issues, be aware that Rifampin can cause hypo symptoms and lower thyroid levels even in a healthy person. If you are taking meds, you will need to increase your dosages to compensate. The pharmacist even warned me of this when I picked up my prescription since she noticed I was still on Rifampin.
Posted 8/14/2015 5:29 AM (GMT 0)
Lymie mom - So if it affects my thyroid - does that mean I might have to go on thyroid meds? If I get symptoms of fatigue, I will get my TSH, FT3 and FT4 done.
Posted 8/14/2015 11:09 AM (GMT 0)
Great to read this info thanks... My LLMD has talked about rifampin being added @ some point for Bartonella. We'd have to "sort" everything else out first... Argh, LOL... but this info is helpful. Thanks for sharing ladies. :) ~ Ali
Posted 8/14/2015 12:05 PM (GMT 0)
I am sensitive to meds. The rifampin gave me terrible anxiety herxes. So I had to gradually titrate up.

Week 1: 150 once a day for the 5 days
Week 2: 150 AM (every day) and 150 PM (every other day) for 5 days

Week3: 150 AM, 150 PM every day for 5 days
Week4: 150/300 AM every other day, 150 PM every day
Week5: 300 AM every day, 150 PM every day
Week 6: 300 AM every day, 150/300 every other day
Week 7: 300 AM, 300 PM


I have read that it's best to take the full 600 once a day. Have you read that? I will ask my LLMD at my next appt.
Posted 8/14/2015 2:23 PM (GMT 0)

Girlie said...
Lymie mom - So if it affects my thyroid - does that mean I might have to go on thyroid meds? If I get symptoms of fatigue, I will get my TSH, FT3 and FT4 done.

It certainly *could* affect your thyroid. I would definitely be on the lookout for hypo type symptoms. Don't just assume any reactions you have are a bart herx (fatigue, irritability, etc) because your FT3 and FT4 levels could be lower. So yes, I would have them checked maybe before you start so you have a baseline, and then regularly afterwards.
I also noticed additional weight gain on top of the 30 I had already gained which was very disappointing.

If you Google Rifampin and hypothyroid or Rifampin and weight gain, you can find some interesting stuff.

Good luck and keep us posted on how it goes!
Posted 8/14/2015 2:57 PM (GMT 0)
Yes I agree with it affecting the thyroid... I actually notice a mild thyroid ache every now and then while I am on it. 

I think our bodies can generally sound alarms as is and we should listen to our bodies.

Also I bumped up to 500 mg clarithromycin and 600 mg rifampin twice daily... And it was alright, but I did notice an increase in fibro like symptoms, particularly in the fibrous tissues in my feet.   I think it's a bart herx... You will notice them mainly in the connective tissue areas as bart likes to concentrate in connective tissue. 

Also I noticed my red rash, particularly on my feet and hands actually went down in the shower this morning... A sign that bart is getting treated.


BUT... I also noticed my liver aching a bit yesterday.  I did 1200 mg... So because of the liver ache I decided to skip my dose this morning as I want to give my liver a little break.  I will just dose once today to see if that helps the liver ache.  I'm also taking a liver support supplement. 

I talked to Dr. MR.  And he said to beat bartonella, taking the medication isn't quite enough.  He suggested me take the transfer factors Lymplus as apparently there are transfer factors for bartonella in that medication as well.  He also said he is okay with prescribing the extra high dose of rifampin for bart, but I would need to get my liver checked monthly on this higher dose as he said rifampin is toxic to the liver.  It also increases metabolism of not only other medications, but also hormones.

Posted 8/14/2015 3:12 PM (GMT 0)
What is in Transfer Factors that treats bart?

I have had my Thyroid tested twice in the past two years - and both times my T3 and T4 are in the upper end of the ranges and TSH below 1 (lower end of range)..which is good...

I don't have fatigue or irritability now...but I have joint pain from lyme. I could get fatigue from the Rifampin (side effect), so it will be difficult to discern if it's from my thyroid - so I guess i will be doing thyroid testing if I do get fatigue starting.

Thanks, Utah - for your schedule...any results yet? Re: once day vs twice daily - It seems to be 50/50 - so I'm going to do twice daily...and i can always switch later on to once daily.
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