Took one dose the other day, seemed basically okay (some nausea, stomach pain, but tolerable). Few hours later, pretty tired, achy. Fairly normal for me.
Went to sleep that night. Was awakened in the morning by very high heart rate and much higher than normal blood pressure. Very, very weak, confused a bit, extreme pain all over. HR and BP were high most of the day. Not normal for me.
Spoke to Dr. Tried taking 1/2 a dose yesterday. Thought I was okay yesterday. Woke up again today, HR and BP very high, cold drenching sweat, pain/weakness nearly paralyzed me for 4 hours. Could NOT move. And sort of delirious again. Pulled out of it enough to try to eat something and post this.
Pretty scared of this stuff now. I've had some other rough reactions to meds, but this is pretty bad. What bothers me, Rifampin is supposed to be very easy to tolerate. And high heart rate and blood pressure is NOWHERE in any 'adverse effects'.
And here, I've read so many people seem to do very well on it.
I want to get better so badly, and push through things....but this seems or felt dangerously bad.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Did you read all the side effects? Drugs.com is a good place to find everything. Also google rifampin along with your symptoms and see what comes up. I took it for three months and it was pretty hard on me but nothing like you are experiencing. If it is causing a major die off that would be good. All of my basic bartonella symptoms were increased - headache, aching shins, hot flashes with some sweating and emotional swings with anxiety and depression.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Wow, unbelievable. I started Rifampin 6 days ago and, like you, am absolutely MISERABLE! I'm so so tired. Like, can't even blink I'm so tired.
Also very dizzy and very 'out of it' feeling. My nurse says my blood pressure is significantly higher than normal- that puts me in an actual normal range though.
Looking forward to seeing other's answers. My husband and I are very very concerned by how much it is affecting me.
Take care.
Posts: 236 | From Washington | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Rifampin was very hard on me, too.
I never could tolerate more than a week or two on it - the symptoms were horrific, and very different from a herx.
The first time, I thought it was a herx, and pushed through till I couldn't take any more.
Finally called LLMD, who told me never to push so hard again - to listen to my body.
Like her - I say, "Listen to your body."
Ultimately, I tried Rifampin twice - and both times ended up deliriously sick, way beyond a herx (and I've done my share of that).
LLMD figured out that I lack the particular gene necessary to detox Rifampin - and told me never, never to take it again.
So - please be careful, and mindful of your body - don't chalk everything up to a herx.
Keep in touch with your LLMD, okay?
-------------------- “Did you ever stop to think, and forget to start again?” - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I also started rifampin 6 days ago, but have done ok with it. I have experienced more aching and fatigue, but I feel it could be a herx.
I did start with only 300mg a day for the first few days and now at 450mg a day. LLMD said we may increase to 600mg in a month or so.
Maybe you could slowly increase your dosage?
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
I lasted 5 days on Rifampin... SEVERE SEVERE headache that lasted 3 wks non-stop.
I won't take it again.
Be careful!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96063 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I was on this drug for 2 weeks and almost ended up in the ER. I thought I was having a heart attack. My BP was through the roof (it's usually normal). I also felt so light headed as if I was going to pass out. I usually tolerate medicine fairly well.
I doubt that I would try this one again. Levequin sounds scary also. My doc says Levequin is next if Rifampin didn't work.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
thanks so much for everyone who wrote. Though I'm sorry anyone else is suffering.
I was feeling pretty shaky to begin with, feeling a bit like my progress was slipping.
And this, just 2 doses (how could that be?)....I feel more sick than I've been in a year. Trembling all day, very bad buzzing/pain, extreme weakness. It's horrible.
And the blood pressure thing. I mean, we're all used to taking medicines that have side effect that pretty much cover everything under the sun. But if I read about Rifampin, for the most part, it says nothing about BP or heart things.....and for the most part, says it's easily tolerated.
I was actually looking forward to taking it, because so many others have seen real progress on it.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
i don't know where you got the idea that Rifampin was an easy med to take. I remember back in 2003 when LLMD's first started prescribing it -- many patients had to take 50 mg or even less as a starting dose. But on the other hand for those that stuck it out, I think this is the one med that got more people well than any other med I have read about.
In my opinion you probably have bartonella or BLO or the mystery pathogen and that is what is causing the bad herx from this med.
I would stop the med for a few days and then get some empty capsules and split the pills into smaller doses and ramp up very slowly.
It took hubby 8 months to work up from 50 mg to the full 600 mg. And then he only lasted for a month before crashing. But he is trying this med once again -- started at 300 mg for one week and then at 600 for three months and now the doc has him on 900 mg. He ran a fever and seemed to herx when he increased the dose to 900 mg. So it still seems to be trying to do something.
He was off the Rifampin for over a year before retrying it this time around. Tried just about everything else for bartonella and mycoplasma during that time.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I had a similar result with Rifampin.....but not as severe as yours out of the gate...mine happened about 6 weeks in.
I am back on it (mycobutin, its cousin) and the first week had hideous tachycardia, extremely sore throat, and swollen ln, then terrible agitation and anxiety. Things seem to be dying down. I have treated bart a long time so hope this means my load is down.
Posts: 3528 | From US | Registered: Apr 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My first two weeks of rif was pretty toxic but since then I'm not feeling it bad at all.
Instead of doing 300mg in a.m. & pm I started doing 600mg at one time at bedtime. Much much easier on me.
I'm not aching all day and not as tired. I've had a few anxiety moments but not doing alot emotional herxing period.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6454 | From Louisville, Ky | Registered: Jan 2002
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by jennie46: I also started rifampin 6 days ago, but have done ok with it. I have experienced more aching and fatigue, but I feel it could be a herx.
I did start with only 300mg a day for the first few days and now at 450mg a day. LLMD said we may increase to 600mg in a month or so.
Maybe you could slowly increase your dosage?
I lied....Today, I feel like I've been hit by a truck! LOL! Just thought I was doing ok.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
Michael, Sorry you are having such a hard time.
Im not sure, but I think I posted somewhere else about this---My Short term memory is so shot but
I just started Rifampin about 2 weeks ago and haven't liked it. I was feeling it was effecting me and then low and behold I read what nefferdun said he had---
"All of my basic bartonella symptoms were increased - headache, aching shins, hot flashes with some sweating and emotional swings with anxiety and depression."
Bingo, THAT is EXACTLY what I have been going through..And I have been trying to explain to those around me why I felt and was acting like that.
Logically, in my mind I knew what was probably happening but it is REALLY nice to know when someone else confirmes it and you know you ARE NOT the only one going through this.
I truly hope you get to feeling better but if the severe symptoms continue please contact your Dr. Perhaps you can cut back or try something else.
When I was first diagonized I didn't have a clue about anything concerning Lyme and I had NO idea what a Herx was.
Anyway I kept taking Abx's. over the weekend---It was so bad I REALLY thought I might be dieing. I suffered through the weekend (not wanting to bother my LLMD) and waited to call him Monday am.
As soon as he returned my call he explained what was going on.
I stopped taking the Rx immediately and started feeling better. Point being, I could have saved myself alot of pain if I had known earlier.
Bottom line, listen to your body.. if you don't feel "right" cut back... unfortuntely we all have time to take meds...I have certainly learned this is a marathon not a sprint we're dealing with.
Good luck and God Bless,
Karen
Thanks map1311....if my symptoms don't level out I may try that route.
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
I've had what I believe to be herxes. I don't know what this was. This was a very violent reaction, very soon after starting it, and after just 2 doses.
It really scared me. I'm still scared. I was very ill and weak yesterday. My body, legs especially, were numb/buzzing/weak/very painful. My brain felt bad. And I was trembling all day, for 12 hours or more. And not nervous trembling, but profound weakness.
I saved 'success' stories for when I feel so bad and low, but I (often) honestly feel like this disease and/or the treatments are going to kill me someday. I don't want to die, but I'm honestly terrified of living like THIS.
I'm hoping to get through and recover a bit today. I have always done heavy detox, etc.....though I'm not even sure it helps sometimes.
posted
I'm starting Rifampin today. Now I am scared.
I was on cipro for 5 days and my bart symptoms got so bad that I had to stop taking it. I had a non-stop panic attack for 4 days in addition to extreme fatigue, shin pain, stomach pain, and terrible headache. Actually, cipro and doxy caused me ulcerative gastritis.
I am taking biaxin now and have nightmares, insomnia, night sweats, rapid heartbeat, and bitter taste in my mouth, which I try to ignore.
My LLMD told me to start Rifampin with 300 mg/day and then increase it to 600.
Posts: 19 | From Rockville, MD | Registered: Nov 2009
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posted
Lymetoo, thank you for the reminder. I'll definitely watch for new symptoms and reaction.
Michael_Venice, I am grateful for your post. Now, I now what to watch for. When I started biaxin, I started having profuse night sweats, which I haven't had before. My first thought was babs. However, it turned out that night sweats is one of the biaxin side effects. This forum is invaluable resource of information for me.
Don't despair, it is a roller coaster, when you are at the bottom the only way is up. Good luck to you!
Posts: 19 | From Rockville, MD | Registered: Nov 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I really tried Rifampin and hated it Michael. I was on it 4 days. I seriously think it may have killed me or gave me permanent damage had I taken it longer. I was a serious wreck on it. Shook like a leaf. I'm sorry to hear it knocked you back so much.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
RIfampin reduces the serum levels in a lot of drugs, increasing it's own and making side effects more likely. I don't know how much it helped me, if it helped me. I had headaches every day which went away. My shins were burning and aching and that diminished a lot. My eyes were much worse on rifampin than they had been in two years and now they feel like they did before. I felt very anxious and depressed and could not think. My hot flashes increased. Rifampin can cause many of the same symptoms as bartonella such as bone pain, lack of concentration, loss of memory, and uveitis.
I took it for three months. When I quit, I felt less depressed in a couple of days. I don't know if that is because the side effects of the drug had worn off or the drug actually worked and I needed to quit taking it to see the results.
I could tell Levaquin was working - it hit much harder than the rifampin but I quickly came out of the funk I was living in. My shin pain and hot flashes were gone and stayed gone for months. I was cheerful and motivated to do things. Unfortunately it gave me tendonitis and I was so sensitive to chemicals I could not take another drug for a long time.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I had been abx free (just a few rounds levaquin)for almost 5 yrs before I started going after bart the son of a gun. I'm trying to knock him down with abx and then I'm switching to rife for maintance.
I know my body and can read it very well after 10 yrs of dealing with this illness. I know better than to allow my body to become to toxic.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6454 | From Louisville, Ky | Registered: Jan 2002
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