This is topic rifampin? Makes you feel miserable in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/99810

---

Posted by janice victorov (Member # 22937) on :
 
Why does rif make you feel miserable? I know it's killin bugs but does everyone else feel the same?

It's brought out all the aches and pains, sore soles that I had before taking it.

Anyone else deal with this? JKV
 

---

Posted by bcb1200 (Member # 25745) on :
 
I feel your pain. I'm in my second week and haven't felt this bad in months. My LLMD says it is a good thing as it means it is selling bugs.

I don't have pains as much as increased brain fog and GI issues, Nausea.

Hopefully it will go away in a week or two.
 

---

Posted by geo (Member # 18333) on :
 
I have/had the pains as well. My knees really ached and I felt like one of my prior wrong diagnoses (plantar fascitis - was actually from lyme) was returning. I find it so hard sometimes to distinguish between feeling like crap from the abx vs. lyme die off vs. immune system response vs. normal aches/pains.
 

---

Posted by ladeedah (Member # 21642) on :
 
I am in the same boat. I felt like crap for a the first 2 day than sort of okay and now back to crap.

I have aches and pains that I never even had before taking this medicine.

I can't tell if its abx killing the buggers off or if the abx is causing inflammation in my joints.

I also now get the whooshing sound in my right ear as well as periods of brain fog, GI issues, Nausea and headaches.

Does it go away? Or is this side effects?
 

---

Posted by nefferdun (Member # 20157) on :
 
I was on it for three months and felt mentally out of it the whole time. I switched to Bactrim DS and biaxin and felt much better in a couple of weeks.

When I look back at the experience I believe it was probably hitting the bart better that I realized. I have hit a plateau on the Bactrim so need to do something else.

Mycobutin (rifabutin) is in the same family as Rifampin and I am going to ask the LLMD about it as there are less interactions with other drugs.

Most people say the first few weeks are miserable and then you see the light of day with Rifampin. Hope that is true for you.
 

---

Posted by map1131 (Member # 2022) on :
 
janice, I've been doing battle with rifampin for about 6 weeks now. It has been horrible.

I had done 3 mths back in the spring '10 and I looked back at my comments and sure enough this time has been worse.

Heel/sole pain really bothering me. The over all aching is exhausting. Neck and headaches much worse.

I don't understand why it's kicking me so much harder and longer this time. The thing I love about rif is....it makes my GI so much better.

I'm only doing 300 mg and when I see others doing 600mg or more???? How do they do that?

It's also ticked off the lyme sx this time, which I don't recall in the spring.

Pam
 

---

Posted by Talktel (Member # 7980) on :
 
HI map1131

I'm on rifampin 300mg just like you,for about six to seven weeks.

I'm taking it together with with cedax abx (in the ceflesporin family)

Like you, I feel achy and my neuro symptoms are bad. Also sole pain.

I didn't think it was a herx anymore because I'm taking rifampin for a while already.

Could it still be a herx do you think? Or is it not working.

The thing I like about this protocol is that my gastric system seems to be o.k. with it.

I'm also taking malaraone and Larium for babs, besides the rifampin to hit the bart. Sweats are coming back so I don't know what that means.

I am going to my LLMD this week, and I have a feeling he'll switch my protocol.

Lymehead
 

---

Posted by TN Kim (Member # 26729) on :
 
I am right there with ALL OF YOU! I'm on my 2nd "round" of pulsing for 3 weeks with Rifampin.

Last time it took a week to feel anything and then I had a pretty bad herx for another full week.

After that I felt nearly back to "normal" again until I had to start this pulse.

This time, I felt depression immediately after the first couple of doses. I have been increasingly

feeling worse every day and right now I am really feeling bad. I have now started getting major anxiety-type feelings

last night I felt panicky which led to nausea and finally had to break down and take 1/2 of the

very last Xanax I have from a script from 2008! I finally slept the best I have in weeks after that

but this morning my BP has been up and I've had pounding heart and hearing my heartbeat in my head

and still all the aches and pains and fatigue. I sure hope and pray that is pulse will be worth

it when it's over. I am taking 600mg. daily.
 

---

Posted by ladeedah (Member # 21642) on :
 
I am doing 600mg also and was wondering about the depression thing.

Is that a side effect? Because my moods are out of control...
 

---

Posted by TN Kim (Member # 26729) on :
 
Yes, apparently it is part of Rifampin but also part of Bart! It hit me immediately after the

first two doses this time! *sigh*
 

---

Posted by missing (Member # 22437) on :
 
Yes! I had 2 minute session/bouts of intense sobbing while on Rifampin.

I was only on it for a couple of months.

And only 300 mg per day.

I tested positive for Bart. and I am worried that is has come back but the LLMD hasn't put me back on Rifampin yet.

Maybe they figure the meds I am on now will work just fine.

I had all sorts of pains emerge while on Rifampin too and some improvement but not much ,

which is why I think that they switched me to BABS treatment.


 

---

Posted by missing (Member # 22437) on :
 
Oh yeah! Those crying bouts were just random!

They would just hit me out of the blue, and only last 2 minutes!

I talked a lot about suicide too, but I wasn't suicidal at all.

That left as soon as they switched my meds!



 

---

Posted by ladeedah (Member # 21642) on :
 
The crying bouts!!! Okay thank you so much because I seriously felt like I was going insane.

I was on the highway and someone cut me off and I wanted to cry....I was thinking I was nuts!!! I am not that wishy washy type either.

Phew...thanks for all the confirmation. It doesn't make it better, but at least it happened to more than one of us.
 

---

Posted by TN Kim (Member # 26729) on :
 
Yes, Lyme truly makes "misery love company"!
 

---

Posted by daphnesmom (Member # 22267) on :
 
I diito all of this; haven't felt this bad in a long time of treatment (3 years).

I just started back to work part time. This couldn't come at a worse time for me. I'm only on 300 mg a day. If I increase it to 600mg I'm afraid of what will happen. Not sleeping well, aching everywhere, head pressure, neuropathy X 100!

When does it end?
 

---

Posted by Tracy9 (Member # 7521) on :
 
I never felt anywhere near as bad in six years of Lyme treatment as I did when I started Rifampin. It took about six weeks for it to pass. I've been on it for six months now and it has cleared up my neuro symptoms amazingly. My fatigue is so much better, no more "lyme coma" that I've been in for years, and I'm so much more awake and alert.

Worth it!
 

---

Posted by janice victorov (Member # 22937) on :
 
Morning,
I know it's working but this morning my soles hurt a bit and have a headache.

This seems to go away later.

I guess it's killin something.

It's good to know that others are going through the same with this drug.

Sometimes you think, OMG,,I'm I getting worse.

Anyway, off to work.

One thing I have noticed is that I have a some anxiety. My doc prescribed a low dose of xanax.

Anyone else use this?
 

---

Posted by TN Kim (Member # 26729) on :
 
Janice, I am also up early with a headache! Woke up with it! Uugh!!!

As I mentioned in one of my posts above, I did have bad anxiety and a panic attack night before

last and had to take 1/2 of a Xanax that was left from a script that I've had from 2008.

Once it kicked it, I slept really well! Last night was not so lucky. I didn't fall asleep

until sometime after 12:30 AM and woke up at 5:00 AM with a pretty bad headache! I think I

will try and get my LLMD to call me in some Xanax for "safe keeping"!
 

---

Posted by bcb1200 (Member # 25745) on :
 
I'm doing better today. My tinnitus seems much much better as does the twiching in my calfs. Hoping it was just a herx.

I switched from Doxy to Biaxin / Amantadine. I take this with my Rifampin.
 

---

Posted by TN Kim (Member # 26729) on :
 
Glad to hear you are feeling better, bcb! That's always nice, huh? I also have noticed

that each time I am on Rifampin, my muscle twitches get MUCH better! This time I also added

a Magnesium supplement for added help with that!
 

---

Posted by ladeedah (Member # 21642) on :
 
Just don't take too much Magnesium or it can give you the runs. I forgot to cut back on my Magnesium b/c my LLMD had me double the usual amount when I was on Levaquin before this new combo.

I too wake with a headache every morning and the "Whooshing sound in my ear is getting louder at night and I notice it in the early morning.

Almost feels like I have an ear ache or there is pressure. I really wish it would go away b/c that causes my night anxiety.

My teeth actually ache today. So weird.

Did anyone experience more calf twitches in the first few weeks when taking Rif?

When I was on Levaquin it seemed to have gone away, unless I stopped it, then it would come back in about 4-5 days.

When taking Rif, I notice they are more intense then I have felt since taking Levaquin.

Is it a herx? Side effect? Or are some of the buggers dying off?
 

---

Posted by mbdq (Member # 26277) on :
 
I felt pretty crappy on Rifampin as well. I took it for 2 months-600mg/day. It also brought on the sore soles, shins, palms symptoms

Felt much better when I stopped it and just stayed on Rocephin/Plaq.

I don't know if it was a prolonged herx, reaction to med or what.
 

---

Posted by TN Kim (Member # 26729) on :
 
Ladeedah .... I think I may have had an increase in muscle twitching at the beginning of my 1st

pulse of Rifampin but by the end of it ... I had almost NONE! It continued like that for the 3

weeks that I was off of Rifampin. Now during my 2nd pulse, they still haven't been too bad but I

have had other bad effects ....more pain, the bad headaches and the anxiety. I guess the bugs

move around so much that the meds have to kind of "chase them down"! *sigh*

mbdg, I'm still wondering myself ... how do we really know what is herx and what is die-off?

The only sort of "proof" I have that it is herx is the fact that I have increase of symptoms with

every new abx that I take ... not just Rifampin!
Oh and I asked my LLMD about the safety issue

with pulsing of Rifampin. He said that he was going to an ILADS conference this afternoon and

would inquire about that specifically. So, our wonderful, caring LLMDs are still learning as well!

Could be that some of them will make wrong choices for our care so it is good that we do sort

of stay tuned in to what he read online and help them with anything we learn as well. A GOOD doctor

of any kind is one that is always striving for more understanding and education himself!
 

---

Posted by missing (Member # 22437) on :
 
It seems like I am always on the lowest dose of everything compared to all of you.

I was only on 300 mg of Rifampin for 2 months, and I tested positive for Bart.

I had tons of anxiety and panic attacks while on Rifampin but had to go off amytriptaline because it interacts with it.

I just started Cymbalta for the pain, and it took all my anxiety away, but I think it makes me feel sleepy all the time.

Take care! Hang in there! Hope you are doing okay today!


 

---

Posted by TN Kim (Member # 26729) on :
 
missing ... is sounds like you herxed plenty on the Rifampin, so hopefully the longer time-frame

with the lower dosage was good for you! I forgot that my LLMD also said he would give me

Cymbalta to try for pain and YES, he is giving me some Xanax for anxiety as well. If the

Cymbalta also relieved your anxiety, then that would be great if I could not have to use Xanax!
 

---

Posted by bcb1200 (Member # 25745) on :
 
So...day 11 with Rifampin.

Overall, better. It must be working because I'm having all sorts of weird, mild, twitches and aches that I usually don't have. Also some GI discomfort and brain fog / word forgetting...also mild.

My LLMD believes this surge in symptoms is due to Bart die off. It is getting better. Today I"m almost normal / back to where I was (about 95%)

My tinnitus also seems quieter, particularly when I wake up in the AM.
 

---

Posted by TN Kim (Member # 26729) on :
 
WOW, you and I are on the same routine right now. I am on Day 12 of Rifampin. This is my 2nd pulse of it though. I finally slept pretty well last night ... darned bladder made me have to get up at 9:00 AM but that is much better than 5:00 AM! Glad you are feeling better!

quote:

---

Originally posted by bcb1200:
So...day 11 with Rifampin.

Overall, better. It must be working because I'm having all sorts of weird, mild, twitches and aches that I usually don't have. Also some GI discomfort and brain fog / word forgetting...also mild.

My LLMD believes this surge in symptoms is due to Bart die off. It is getting better. Today I"m almost normal / back to where I was (about 95%)

My tinnitus also seems quieter, particularly when I wake up in the AM.

---

quote:

---

Originally posted by janice victorov:
Anyone get chills and awful headache from the lovely rif?? I thought oh no it's a cold but it seems as though it's the rif.

Janice

---