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» LymeNet Flash » Questions and Discussion » Medical Questions » Calling all Rifampin users ... I'm scared!

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Author Topic: Calling all Rifampin users ... I'm scared!
dan67
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So my doctor called in a script for Rifampin. For some reason, I'm scared to death of this stuff. Can people please share their experiences here (positive or negative?) Did the stuff help you or almost kill you? Herxes, side effects? Encouragement needed. Thanks.
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utz20
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I'm on it again and find it very helpful for the neuro problems I continue to have. Just drink lots and lots of water and take liver support like milk thistle. No alcohol. You will pee orange, actually pink if you are drinking alot of water. I have no problems with it.
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ardraneala
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im three days in....im scared too ^_^

--------------------
Listen. That's all we ask.

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dan67
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I'm still traumatized from my terrible Bactrim experience...
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Dekrator48
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I took it for 3 months and had no problems.

The only thing I noticed was some ice pick stabbing head pain during the first couple weeks.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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map1131
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Don't be scared to try it. It won't kill you, but be ready by starting with smaller doses than even the doctor recommends.

150mg is the smallest dose. My PCP if I ever get the want to try it again said to take 150 and divide it up with empty capsuls you can buy and take 75mg.

PCP says 75mg might be what I can tolerate. Muscle testing myself many times, my body always sways yes.

I took it for 3 mths 15 mths ago. The first month at 150mg a day was rough. But I know rough. Then I started having better and better days.

Personally I was using for bart which rules my GI tract. It was amazing how rifampin made everything flow the way it's suppose for 2 1/2 mths.

I thought I had gottne my bacteria load down enough with 3 mths to switch to more alternative tx. I made a huge mistake. My GI within 2 weeks was again ruled by bart or one of his close friends(my enemy).

I did abx for over 3 yrs many years ago and they ended up being harmful to me. So I left traditional meds and went with alternative.

I tried going back on rifampin 150mg about 4-6 mths later and made it 7 weeks and I couldn't do another day of it.

I've learned to never say never. But I have discovered some alternative stuff that is killing my bart load and I don't have to stay in a toxic state.

Rifampin is on the back burner for me. I don't have any clue how your body will react to rifampin. I'm not your doc. I've only got my experience.

Rifampin did tick off lyme bacteria for me. My lyme sx were back 24/7 and hard to handle. My knees, neck pain and moving pains from head to toe were upfront and hard.

I like to tick of lyme bacteria though. Them nasty SOBs deserve death and I shocked them with rifampin. lol

Hey, it's your life and illness. Nobody has one man's cure in this situation. But you can do many things for yourself and your body to fight off the herx/healing crisis, so they are not so unbearing.

Dan is family name in my family. So Dan, go get 'em!!!!!!!!!!!!!!!

Pam

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"Never, never, never, never, never give up" Winston Churchill

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dan67
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Pam thanks for the thoughts on this.

When you say "Rifampin was rough" - do you mean med side effects or herx?

Also, if you don't mind sharing, what kinds of alternative Bart remedies are helping you?

Thanks! I love my name! :-)

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ardraneala
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i suggest eating with it. reduces the effectiveness by 30 percent. increase the time between eating and the dose.

heres some info about liver toxicity http://www.sovegastro.com/pdf/Hepatotoxicidad%20drogas%20antituberculosas.pdf

--------------------
Listen. That's all we ask.

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scorpiogirl
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I was on Rifampin for 10 months and I did not have any problems. It kept my Bart at bay but did not get rid of it. Recently, I just learned the oral dosage I was on was NOT strong enough to kill them.

I was on 200mg 2x/day. Recommended 600mg ONCE a day. I have been off it for 6 weeks now waiting to go on IV Rifampin and my Bart is out of control!! So now I know for sure that even at the lower dose it did help, so I'm anxious to see how well the IV will work!

So I had a positive experience on Rifampin and that's saying a lot since I'm super sensitive to ALL things!

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 -

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dan67
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scorpiogirl, what are your main bart symptoms?
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annier1071
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Make sure you start real slow. I took one pill on a monday and the next one on a wednesay. By wed night I was in a horrible state!

Dr R called and said to stop the med right away I was so sick. It took me three weeks to get over the horrible herx affect that I had. Some say it worked for them and they did not have a problem. My LLMD feels taht it stirred the pot up on my lyme and mixed with my ohter abx caused a severe herx that he felt was dangerous.

I could not eat due to severe nauseau, not sleep at all. I had continuous tremors and every nerve in my body vibrated to where I could not get a breathe of air and my BP went dangerously high.

I would suggest you take half a dose one day and half two days later. You will know if it is going to bother you or not by then. I was never told to take it again after that. Much luck. I pray it works fine for you.

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

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Cattail
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Been on 300 mg 2x a day for 4 months and not one ill effect. I am slowly feeling improvenment and during the first month had a pretty major herx with headaches, cognitive problems and now just little bumps in the road for herxes. I personally like this abx for my Bartonella so far.
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map1131
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Well if that's the dose to kill bart....I will never kill bart with abx. No way, it'll never be.

I'll find another way. Trust me, there'll be another way, for me at least.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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lyme987
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Dan,

I've been on rimfampin so many times I can't even count-iv and orals

I've had bart for over 25 years-classic rash covered my back when I was 15-no doc then knew what it was, postive ANA also.

I have severe neuro symptoms and rifampin does work-I seem to be getting more and more sensitive to it though

The only thing I can tell you is that it can cause some depression-not in all-I was on cymbalta the first time for 3 months-no problems at all.

Switched up meds a year and 1/2 later-depression came on

I've been treating over 3 years now-I'm one of those crazy cases though-real bad

Try and go in with a positive attitude-easier said than done. It does work

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joysie
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I love Rifampin. Have been on it 5 months. I had a couple weeks of bad headaches and fatigue but now I feel quite decent! I don't want to go off, honestly. Go slow and good luck.
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searching4truth
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I just started on Friday... Sunday started the worst herx I have had yet. Tonight I am just starting to feel better. I stopped taking it Sunday, but I need to start again. I think Bart is more of a problem for me than Lyme is though. I am scared of starting again, but I know I need o in order to get healthy. I have been detoxing in every way I can, so that is why I am feeling better now.

What have you heard that scares you? The herx, or is there side effects that scare you? I am interested to know, because I have not heard of any bad side effects.

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sammy
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No need to be scared. I started it on the full dose. At first it made me a nauseous, that went away when I took it with a little food. After a couple weeks I got used to it and was able to take it on an empty stomach.
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SScott
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I've been on it for 3 months and credit it with a lot of improvement I've made with Bart. Some strange emotional type herxs, but I noticed improvement quickly.
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ardraneala
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the head ache today from rifampin and vertigo...gonna get my liver checked tomorrow if i can to see if its herx or toxicity. it did put me in a very cranky mood the first day.

--------------------
Listen. That's all we ask.

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AnnaOD20
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I have had absolutely no problem w/ this drug. I take it twice a day and have been on it for all 5 months of treatment. I also take milk thistle and andographis plus a bunch of other vitamins/supplements. Good luck!
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scorpiogirl
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Dan, my Bart symptoms are more severe than my Lyme.

I have brain lesions, crushing fatigue, abdominal pain, erythematous papules, loss of vision (but only temporary), weird rashes, joints pain, bottom of my feet hurt (like I'm walking bare feet on rocks), peripheral neuropathy, pain near my heart (the heart itself is fine I had many tests done) but it's affecting the surrounding areas just to name a few.

This is why my LLMD feels that oral Rifampin at 200mg at a time is not strong enough to kill the bugs in my case. And if you take into consideration that many of us may have mal-absorption problem... are we then really getting the full 200mg? Rather than keep on trying for years she wanted to do IV 600mg and hit it hard! She actually said Bart is one of the harder co-infection to treat!

I know many people are against taking high doses of antibiotics in fear of all the sides effects. I too was one of those people. In fact, when I first started last May I only did herbal formulas and tons of detox. I added only one antibiotic at a time and only at the lowest doses. A year later I have gotten significantly worse not better. When my left leg started to go numb I just knew this was not working for me and the Bart was getting the upper hand.

So for me personally, I want to go after it HARD and FAST or die trying. I don't want to live the rest of my life half dead and in pain 24/7!!

[ 06-02-2011, 03:35 PM: Message edited by: scorpiogirl ]

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 -

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map1131
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sammy, I don't think you know Dan or his body and how it's going to react. He could very well be fine. Maybe you do know his whole history. Maybe you have a degree on the wall?????

I like to be safe, more than sorry. Sorry, it must be something I learned from the best LLMD in the midwest of US.

Start slow if you're not sure how you're body is going to react.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Lauralyme
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I felt nothing but great on it. It really was the abx for me.
I did notice it was more effective on an empty stomach.

--------------------
Fall down seven times, get up eight
~Japanese proverb

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madge
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My husband has been on it now for 4yrs...and in
the last 6mts he has been getting so much better..

along with paqunil and flucomazole...he was real
sick for a long time...

his 9 yrs problems have been bad head and eye
pain.....his eyes are a lot better he is
watching tv...has not watched for years...

he had lyme for 4 yrs before we finally got
an answer he had lyme...

hope all goes well for you...Madge

--------------------
madgen

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map1131
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Well I'll just fight bart with other things, my rife and anything else supps or herbs. I'm not doing combos of abx.

Been there done that.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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dan67
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I don't understand why LLMDs prescribe such long courses of ABX. What I find personally is that they REALLY help me for about 2 weeks, and then I stop having a herx reaction or improvement with any given drug, and if I stay on it longer, it just seems like it is bringing down my immune system and giving me Candida.

Taking the drug for 2 weeks seems like a big win, taking it for 5 months seems like a loser.

But maybe this is just my body and unique infections.

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sammy
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dan and map, please forgive me. My post was not intended to offend anyone. I only meant to share my experience as was asked.

As map pointed out, I do not know your health history or the current condition of your body. I cannot predict how you will react to this new medicine.

Since you have chosen your LLMD I do expect that you trust their wisdom and guidance. Do follow their instructions and take the medicine as prescribed. If you doctor wants you to start out slowly then do so. They know what you need.

My doctor has never once told me to start low and work work up to the therapeutic dose. I have always started my medicines at the full dose as prescribed.

Obviously I don't have all the answers because I'm still here with you, looking to learn from others experiences, trying to get well.

So please, accept my apologies. I did not mean to offend or speak harshly.

I do wish you the best of luck with your new treatment protocol.

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lpkayak
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couldnt read all but:

"Don't be scared to try it. It won't kill you, but be ready by starting with smaller doses than even the doctor recommends."

is what i agree with

it did make me suicidal...but in a wierd way. i had a close friend with me for the first week or so and then that went away and i got got rid of a lot of sx

--------------------
Lyme? Its complicated. Educate yourself.

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little_olive
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If you're going to take things for two weeks you may as well not take it at all. This isn't a sinus infection we're dealing with. LLMDs prescribe such long courses of antibiotics because that's how long it takes to clear the infections in someone with multiple bugs and a weakened immune system.

Stay on preventative candida protocols throughout your treatment. Alternate your anti-candida herbs/meds every 4-5 days to prevent resistance. Always take probiotics two hours after your abx dose (esp at night).

Do not eat with Rifampin (unless it makes you very nauseated, which it shouldn't), or it won't absorb. If you're taking 600mg daily and your urine doesn't turn orange at some point in the day (or yellow-orange at 300mg daily), that's a problem; it means the drug isn't being absorbed and that's because of eating too close to it. (For the record it doesn't literally TURN anything orange, the medication is red and the portion of it that passes unchanged through the urine, it's diluted, so it appears orange.)

If you have a lot of neuro symptoms or are prone to extreme herxes, it'd be best to start slow. You cannot take Rifampin by itself because it creates a very high rate of bacteria resistance, which will render it useless; it has to be combined with something like Zithro (a macrolide), doxycycine, etc. Do not skip doses because that's how you create probelms with this drug, and how 90% of the adverse reactions are experienced--keep taking it, or do not take it, but don't take it every so often or "most of the week" like some people do with other antibiotics.

It treats bartonella. It treat c. pneumonia and mycoplasma. It also treats the cyst form of Lyme so your Lyme symptoms may pick up.

Gave me the worst herxing I've ever had, but helped tremendously.

--------------------
Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine
Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08
IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++
IgG deficiencies and MTHFR 677TT mutations

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searching4truth
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Thank you Little Olive, I could not have said it better myself.
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dan67
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I'm curious how all you Rifampin users are doing NOW, after you took it. Did it provide permanent help, even after you stopped taking it?
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searching4truth
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I just started. I have high hopes, and am anticipating feeling a bit better by the end of the summer. I don't know if its gonna happen or not, just trying to be optimistic. Something I have lacked for quite some time.

Something a friend of mine with massive Bart told me today is that Bart is a master at making biofilms. The best of the TBI's. So we all need to be taking something for biofilms along with the rifampin.

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little_olive
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/107750#000002
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dan67
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The best thing I've done for biofilms is MMS. Antibiotics didn't work at all before I did MMS, now they work. If you read about the MMS chemical on the internet, it rips through all kinds of biofilms and is used for this reason in industrial applications. PS - I'm not saying its FDA approved or safe, but it helped me a ton.
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map1131
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Still fighting the fight Dan. It seems baronella is as mean and as smart as borrellia.

If it was all so fricking easy.....we wouldn't need a support group. We'd take a 3 week course of abx and go on with our lives.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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lymeinhell
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Got rid if Bart for me - been off all abx 6.5yrs now. I took it with low dose Flagyl.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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timaca
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I started 300 mg rifampin bid and 100 mg doxy bid a little over a month ago. I'm also on acyclovir for herpes viruses and oxymatrine for coxsackie B.

I did have a herx reaction (bad night, 2 bouts of tachycardia, sore left hip and right knee, headaches, etc). I have been knocked back a bit. With any luck, I'll see some improvements in a couple of months.

Best, Timaca

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map1131
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sammy, no need to ask for forgiveness. I was just making my point.

many people on this site are taking 3-4-5 abx at one time. I don't agree with that practice. I'm not a doctor either.

But I do have some common sense since I've lived through this nightmare for 12 years. People post here all the time and list how many abx they are doing 3-4-5 and they have a question about why this is happening, why they are so sick?????

It just makes me so upset to think someone is doing that many abx at one time and they don't realize why they feel like crap????

I can't even comprehend that without thinking DEATH. Because in my experience I would have died long ago if I followed a protocol like that.

Now I know everyone is not like me. I did some combos of abx. Even tried to go with 3 that my LLMD wanted me to try to get to.

My LLMD wanted me doing 250mg 3 times a day(I think) of flagyl with some other abx. I can't remember, I'd need to pull out my LLMD orders from him.

I couldn't do but a sliver of flagyl for 4 days and then off 4 days. I was in the worse place in my life. I was in the pit of he!!.

On a sliver? I shutter to think what would of happened if I followed my LLMD guide lines for me. He was in complete agreement with me not going there.

This doctor believes one can put oneself in point of NO return by not listening to your body.

That is one super practicing LLMD IMHO.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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dan67
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I have had somewhat of the opposite experience as Pam, I can take the 3-4-5 combo abx's, herx for a week or so, then feel better for a week, then NOTHING -- they just stop working. Don't get better or worse. I've tried months on combos but don't do it anymore because the majority of the time seems like a waste. So now I just do them for 3 weeks or so.
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crx
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Very leary about all these crazy meds that these llmds advise to take. Use caution.
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nefferdun
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Just want to add one caution about Rifampin. You don't want to stop and restart it or you will get flu like symptoms. I started low and worked up to 600 mg a day. It did not do anything for me so I quit after three months. I may try it again after this babesia is under control because it is good for ehrlichia as well as bart.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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searching4truth
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I think the most important thing is to listen to your own body. I know its hard when your body is screaming at you all day and all night. Any treatment comes with risks, and you have to weigh the risks of treating vs the risk of staying sick. A doctor that you can trust is invaluable in the equation.

I am disabled by my illness, and have a young family, so I am getting pretty aggressive with my treatment. I take so many different things, some pharmaceutical, some herbal, some homeopathic, and some Chinese medicine. If I do not get the results I want after a reasonable amount of time, I will reconsider my approach. I trust my doctor. I am blessed to have found him. We are all different, with such different illnesses. If we are on this thread, it is important to support each others individual situations and unique needs. No two people have Lyme present the same I their bodies. It is interesting to me to see how unique we all are.

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scorpiogirl
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I agree with Searching... there is no one size fits all, so you have to do what's right for YOU. No one can make that decision for you. Like Searching I am also disabled w/ 2 young kids. I already lost 2.5 years of my life I cannot afford to lose anymore so I'm going AGGRESSIVE! I will be on 3 IV (pulsing on some) and one oral. Of course there are risks, but that's my reality. Staying sick and be a burden to my family for YEARS with no end in sight is NOT a choice I want to make.

Now if I was not disabled and somewhat functional like many others on here are, then sure I would be willing to try other stuff... but for me time is of the essence. My LLMD said the longer it takes to treat Lyme and Co the harder it will be. But that is just me though.

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 -

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map1131
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I have had flu like symptoms for 4015+ days. So if I don't have flu-like symptoms that's what I call a miracle day.

Yes, I know about stopping and starting rifampin. That's why I took a long break inbetween tx. But bottom line I don't like having flu and deep pain and misery and weakness and herx all in the same day.

I'm very pain tolerant or should say I used to be very pain tolerant. I think I still am, but you can only take so much he!! before you say how can I stop this cycle?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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dan67
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What is the scientific explanation for the flu like symptoms stopping and starting rifampin? IS this something that is herx related, or side effect related?
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little_olive
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It is not herx related, it is an adverse reaction where the body develops an immune system mediated response to the drug. You don't want that, so don't stop and start!
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willbeatthis
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Rifampin with Azith was very, very helpful for my bart. It was the first time the neuropathy in my feet and pain began to significantly diminish. I really did not want to go off of it but my doc has me on levaquin now and I think it is helping even more. There is great advice here. Make sure you take it on an empty stomach and give it a chance. Best-
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dan67
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Do people notice that Rifampin (or any bart treatment for that matter) actually gets rid of bart even after treatment is stopped, or is it just a temporary benefit?
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Jane2904
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Anyone just take Rifampin for Bartonella?

Daughter has problems with most of the antibiotics that may be taken with Rifampin.

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crx
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I don't think anyone should tell you not to be scared.. Heck um scared of any drug out there.. Cause you just never know what kind of reaction to expect. I'm probably the worst person to give support when it comes to popping pills. I often feel backed into a corner like dammed if you do dammed if you dont. This is my biggest issue right now over coming the fear of taking stuff. So.. I get you and your not Alone. If your real afriad and feel it stresses you out to much Ask for another alternative if possible. I was handed the same stuff. Have yet to take it.. Going slow do to my fears and sensitiviy. Good luck.
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lymeinhell
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I took it with a very low dose of Flagyl for about 9 mos. And again, am off abx and well, have been for 6.5 yrs.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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dan67
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lymeinhell, you took Rifampin for 9 mo's? What dose? Thanks.
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