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Terrified to start rifampin

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Posted 8/27/2016 5:02 PM (GMT 0)
Okay, so as some of you my have read, I have gone 3.5 years trying various non abx treatments and am still very sick. Tonight I am set to start on rifampin. I am truly terrified after reading the side effects/risks which include anphalactic shock, permanent liver damage and death!!! Oy...I was already poisoned by levaquin 4 years ago and swore I would never take another antibiotic. On the other hand, I am at a standstill here and my newest dr is insisting that this is the way to go.

For those of you that have or are taking this drug, please tell me that I will be okay. My lyme PTSD is really pulling me away from wanting to do this.

Also, I am still working full time,.. Huge huge struggle every day especially due to the intense anxiety/panic attacks. Realistically, am I going to be able to work while on this drug? I have a long commute, etc..,
Posted 8/27/2016 5:28 PM (GMT 0)
did rifampin 600mg 1x day for 4 months no issues (aside from orange urine!).
Posted 8/27/2016 6:00 PM (GMT 0)
cheryl i noticed you tried UVLrx. how did that work out for you? any positive changes? how many sessions did you do?
Posted 8/27/2016 6:06 PM (GMT 0)
Can you convince your doctor to start you off on a VERY low dose- just to see how well you handle it?
Posted 8/27/2016 6:44 PM (GMT 0)
Took for 2 months straight wIth no problems
Posted 8/27/2016 8:22 PM (GMT 0)
I've been on it for 2 months with zero issues.
Posted 8/27/2016 10:25 PM (GMT 0)
Cheryl - I was concerned to start it too. But, I had no issues - other than some esophagus irritation - but I have that with several of the abx.

I was concerned about my liver enzymes because they became high after several months of lyme only antibiotics.
After 2 1/2 month break, when my liver enzymes normalized,...i started minocycline for a month, then added Rifampin. My LLND instructed me to start with 300 mg once daily for a week or two (can't remember) I actually did a week of approx. 150 mg once daily...I purchased some empty capsules...and split them.
Then I did 300 mg daily...and then 300 mg twice daily.

The surprising thing - my liver enzymes continued to drop after adding Rifampin.and have remained in range ever since - that is about a year ago.
Thinking that the raised liver enzymes were perhaps bartonella ...and the Rifampin may have done some serious killing.

I was never fatigued on it, either. (I've read that some people do get that as a side effect)

Do you have a standing order for monthly kidney and liver function tests? You can monitor your liver that way - and you will see if it's hard on your liver right away...and then you can stop if necessary.

I couldn't work - but I haven't worked in almost 3 years - it wasn't because of Rifampin...but the illness.
Posted 8/27/2016 11:07 PM (GMT 0)
Ricky 1,
I did 13 uvlrx treatments. I had some reduction in anxiety overalll. I also had a ton of energy after about my 10th treatment that lasted for ONE day! After I stopped the treatments a few weeks later my anxiety shot through the roof and hasn't come down since. For me it was a lot of money, a lot of stress with zero long term positive effect ( althoughy dr said I needed to do 30 yteatments).

Traveler,
I think I AM starting at a very low dose... 150 mg every 3rd day for the first week, then every other day the 2nd week, then once a day 3 rd week, then twice a day 4 th week. Then I add zith
Posted 8/27/2016 11:09 PM (GMT 0)
Also package says take on empty stomach. Dr didn't give instructions but I just assumed take w food
Posted 8/28/2016 4:23 AM (GMT 0)
wow 13 ulrx treatments must'e cost you a fortune. i think they're about $300 per session around here. the biggest advantage my LLMD says is the anti-inflammation effect. i would think it would be the killing of all pathogens. i hear it also improves circulation.
Posted 8/28/2016 4:35 AM (GMT 0)
It is more effective without food. I could not tolerate it on an empty stomach. It felt like I was taking Ibuprofen without enough food in my stomach. However, many people do tolerate it without food.

It is considered one of the best antibiotics for Bart.
Posted 8/28/2016 1:16 PM (GMT 0)
Hi. I'm new to this forum and will probably come across as pretty ignorant but I have to ask, what does UVL stand for? After 7yrs of worsening symptoms and doctors wanting to put me on antidepressants and not having anything useful to say to me, I diagnosed myself and sent my blood samples to Germany. The results were positive for Lymes. Three strains strains of Borrelia B., Chlamydia pneumonia and Cosackie-virus A7 and B1. I started Lymecycline and Rifampicinc 300mgs/day. I was very sick after the third day. After 6 days my doc told me to come off the Rif for a week and start taking it 3 times a wk and build up. I noticed that 'Girlie' said that her liver enzymes lowered to a normal range and I'm wondering if anyone knows if by building Rifampicin slowly the liver enzyme levels are reduced? (almost as if the body becomes more tolerant of it)? I hope my question makes sense as its difficult to explain what I mean. Thank you .
Posted 8/28/2016 5:34 PM (GMT 0)
Welcome, Arialuna

I don't know anything about UVL therapy - I think it is Ultra Violet Light therapy.

I'm sorry you got the run around for 7 years - but am glad you found your way here.

What is Lymecycline?

I don't know if starting Rifampin at low dose is why my liver enzymes continued to drop.
For some reason the Lyme only antibiotics caused them to continually rise. I'm wondering if they were "stirring up" my bartonella symptoms but the Rifampin was successful at killing the Bart which resulted in liver enzymes normalizing. There's more to this story, but I don't want to ramble about my situation.

Many people do start Rifampin at a lower dose and ramp up to full dose after a few weeks..or even longer.

We suggest all new members take a look at the thread at the top of the page titled "New to Lyme?"...Start Here". It's packed full of useful information.

This is a great community of supportive and knowledgable people. I hope you stick around - feel free to ask any questions you have,
Posted 8/28/2016 5:37 PM (GMT 0)
Arialuna -


I also wanted to mention that the recommended dose of Rifampin is 300 mg twice daily or 600 mg once daily.

Is that the dosage you will eventually get to?

Also - is the Dr. treating you a Lyme Literate Dr.?
Posted 8/29/2016 1:31 AM (GMT 0)
I am scared too ..bad bactrim experience ...it is a old drug ..i know no cconselation. .it has short half life ..not like plaq which last for weeks so ther is that ...i start if you start ..
Posted 8/29/2016 12:51 PM (GMT 0)
I just did three months (twice daily, every day) of rifampin with no issues. Took it on an empty stomach as package indicated; had monthly bloodwork done to check liver. It really wasn't bad--and I, too, had issues with Levaquin and Avelox. My LLMD just switched me to rifabutin, which is in the same family and supposedly has fewer of rifampin's harsh side effects. Maybe if you're really concerned you could talk to your doctor about trying it instead. Good luck!
Posted 8/29/2016 12:54 PM (GMT 0)
Hi bluelyme,
I started yesterday. One 150 mg pill. Taking it every 3rd day this week, so not till wed. Next week I do every other day. 3rd week on e a day, 4 th wk twice a day. I don't weigh much and have major detox issues, so prob will stay at that dose ( thst is if I tolerate it). Had the orange pee yesterday ! Felt more anxious and slightly fluish yesterday ( anxiety could also be anxiety from the fear...)

Yesterday I was reading that there have been cases if people who's liver looked fine while on it. Then after stopping, liver failed and resulted in death!! Oy... I need to stop reading... However, the thing for me is thst I suffered permanent damage after taking levaquin for a sinus infection for years ago and swore is never take another antibiotic... So you can see I'm pretty desperate st this point... Need to be healthy soon!!! No more lyme !!!!
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