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Symptoms getting worse on Rifampin! :(

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Posted 7/21/2014 7:36 PM (GMT 0)
Was wondering if anyone who has taken or is taking Rifampin could share their experiences with me.

I have now been on Rifampin for about 3 weeks at 300mg (taken all at once). I am trying to work up to the full dose of 600mg.

For the past 2 weeks, my symptoms (heaviness in thighs, neck and back) and muscle pain is getting worse. I was already struggling with my symptoms, but since starting the Rifampin, my worst symptoms have increased ten fold and am now unable to walk! 3 months ago, I was walking a couple of miles!

I am really depressed and don't understand why Rifampin is making my symptoms worse and really feel like giving up! I was hoping that Rifampin would sort out my CNS symptoms, but instead I am just getting worse!

Please could you share any Rifampin experiences with me. I am feeling extremely depressed and suicidal.

Thanks!
Posted 7/21/2014 7:39 PM (GMT 0)
Sorry you're feeling so awful! I'm wondering if you're herxing...if it's the worsening of symptoms.
I've just had the same thing happen with doxycycline, and I'm thinking it's a herx.
Hoping a veteran will chime in and help you out.

Are you doing enough to detox?
Posted 7/21/2014 7:58 PM (GMT 0)
Thanks Girlie for your answer and time!

Yes, I'm doing as much detoxing as possible, but nothing's helping. With the symptoms worsening, also have been feeling unwell, fatigued, lack of energy, headaches etc.

I'm just not sure how long a herx can go on for! I thought that once a herx is over, there's an improvement in symptoms. However, in my case there's no respite yet! :(
Posted 7/21/2014 9:59 PM (GMT 0)
Hi there,

I am so sorry you are having a hard time. So many of us can relate- you're not alone. I'm glad you reached out here.

I don't have any experience with Rifampin (yet), and I know that's what you're looking for, but I just wanted to let you know that I hear you and am thinking about you. Please call your doctor asap (if you haven't already) to let them know exactly how you're feeling. If you're feeling too crummy to call, please email me and I would be happy to make the call for you! They will want to help you through this as well.

I wish I could hug you!
Posted 7/21/2014 11:27 PM (GMT 0)
Hi Unlucky77 - call your doctor right away - please don't wait. Suicidal thoughts are nothing to wait out! Please don't choose a permanent solution to a temporary issue. And it is temporary.

If you don't get a response from your doctor, reduce your dose of rifampin, but don't stop it. If I'm remembering correctly, there are increased dangers of starting and stopping and then restarting rifampin. Please correct me someone if I am wrong on this!

And then call one or more of these numbers:
1-800-SUICIDE (1-800-784-2433)

This is a combined network of the Amerian Association of Suicidology, the National Hopeline Network, CONTACT USA, and many other organizations. Call are automatically routed to the nearest crisis center to the phone from which the call for help is placed.


NDMDA Depression Hotline | Support Group. 800-826-3632

Suicide Prevention Services Crisis Hotline 800-784-2433

Suicide Prevention Services Depression Hotline 630-482-9696

Crisis Help Line | For Any Kind of Crisis 800-233-4357

Suicide & Depression Hotline | Covenant House 800-999-9999


Or go online for help:

------Online Hotline Resources--------

www.crisischat.org/chat/

www.befrienders.org/

/www.imalive.org/

www.suicidepreventionlifeline.org/

www.suicidepreventionlifeline.org/


There's even a suicide prevention with texting!!!
Need Help? Text “CTL” to 741741.

CTL (Crisis Text Line) helps individuals in crisis by connecting them with a compassionate, trained listener through a toll-free texting service. CTL is available nationwide and 24/7
www.crisistextline.org/ for more information about this option.

Please keep reaching out to people that can understand what you are dealing with. You can beat these feelings!!

And you should know that there are many here that are concerned about you - I was off trying to do something with my computer and received an email from a concerned member! We are all here for you!! If you wish to email someone from this forum, I know that all the Mod's would be happy to talk with you and I'm sure many other members would too!!

((((((((((HUGS))))))))))
Posted 7/22/2014 12:37 AM (GMT 0)
Hi Unlucky.

Ya I would talk to your Doctor about it.

You should know one of the main side effects of being on rifampin is fatigue. So this is probably the reason why you feel so fatigued. I know when I was on it, I felt like I couldn't move! It was bad, I actually learned to take it in the evening because it would make me crash right after.

Also I think rifampin does help for CNS infections as well. You would think it wouldn't because it is such a big molecule, but I think it does help. I felt like it worked well to suppress symptoms for me though.

I was only on it for a month and switched my meds at that point.

Rifampin is one of the best abx out there for bartonella, almost as good as the fluroquinolones but without the risk of rupturing your tendons. Also some LLMDs claim it is also a cyst buster for lyme... But I just don't know where the heck they got that information from? I haven't read any studies.

Oh also, generally it is recommended not to pulse rifampin as there is a potential risk of having bacterial resistance. And it should also be paired with another antibiotic. Well borrelia is a slow growing germ and in my opinion it is not likely to become resistant, bartonella grows a little faster cycling every 7-10 days. But when you think about it, that is also pretty slow growing. But some LLMDs do pulse it and claim that resistance with pulsing this is unlikely.
Posted 7/22/2014 12:48 AM (GMT 0)
I have been on rifabutin ( very similar to rifampin) for 10 days. The first five days was 150 twice daily, then 300 twice daily. So I moved up to 300 mg twice daily of Thursday, and by Friday I was living in hell. We dropped it back to 150 twice daily, but I am still in terrible shape. I am not suicidal, but I told my husband I now understand why suicide is the number one cause of death in Lyme disease.

I am not a druggie. Today I have had 60 mg oxycontin, 40 mg Percocet, 12 mg dilaudid an 20 mg Vicodin. That's crazy. But I am finally able to do something besides lie here and moan/scream.

My headache is beyond belief. My back and abdomen are on fire. My left shoulder radiculopathy , feels like I'm being stabbed and runs down my left arm. My neck pain is much worse than before starting treatment. I'm really not sure how long I can take this.

My weird drug combos are what I have in the house. I'm supposed to be taking 10mg oxycontin twice daily with dilaudid for breakthrough pain. I'm out of dilaudid after what I took today, and 10mg oxycontin isn't cutting it anymore.

I'm seeing my GP tomorrow. She's been managing my pain because she's here in town. My LLMD is couple hours away (I know, I'm lucky). I'm afraid these drug levels may worry her and she may want out.

This can't last much longer, right?
Posted 7/22/2014 4:24 AM (GMT 0)
AML 94 - those are heavy pain meds to be taking. Be careful!
I hope you have an appt scheduled soon with your LLMD - you need to discuss your pain levels.
Posted 7/22/2014 5:00 AM (GMT 0)
Hi AML94. That's some crazy pain meds! Yikes is the pain really that bad? Have to be careful because you could get an opiate addiction on top of your Lyme disease. And opiates mess with the digestive tract too. I'm taking low dose naltrexone which is the opposite of pain meds. But what it does is causes the body to make more of it's own endorphins which are the bodies natural pain killers.

My Dad broke his back just 2 months ago. At his worst he was getting 4 mg of dilaudid. And just a few weeks ago he finally tapered down to 1 mg every 4 hours, then just as needed. Now he's finally off them completely. So he only did the dilaudid. He said he did 5 mg one time and his body was floating and he said he was out of it but in a really relaxed way.
Posted 7/22/2014 6:21 AM (GMT 0)
As I said, up until Friday I was taking 10mg oxycontin twice daily with 4mg dilaudid for breakthrough pain. My GP prescribed to oxycontin because it isn't as strong as dilaudid. She was worried about the amount of dilaudid I was taking. The bottom dropped out Friday.

I was worried about addiction. I'm not anymore. If I make it far enough to be addicted I'll deal with that then. Without meds I'm sure I wouldn't make it that far.

My mother was hospitalized with what the doctors called "the most painful condition they treat". She was fine with just dilaudid, but when then tried to change her to oxycontin, she got into trouble fast. My point is that " just dilaudid" is pretty strong!

Yes, the pain is that bad. My headaches make me vomit. Mostly I'm just flailing around in bed moaning, crying, or occasional screaming.

I went to a different doc on Thursday( before it got so bad, but it was still a worse than average day). She kept trying to say my pain was a 10. I said " I'm having a conversation with you, how can it be a 10?

Anyway, hopefully I'll get through this and be "OK" again.

Right now I'm up and typing because my husband gave me my drugs but then I couldn't sleep.
Posted 7/22/2014 6:51 AM (GMT 0)
Thank you all for your support and concern. I'm really sorry if I have upset anyone by my comments. It's just so tiring to treat this disease and then see no respite whatsoever. I really feel like a prisoner in my own body and wish I could take a break from it!

I have made an appointment with my LLMD and will discuss these issues with him. I hope that he will be able to help.

For those, that have taken Rifampin, is it common for symptoms to worsen before they get better? My other antibiotics didn't really make things this worse for me. I really am fed up and don't know how much longer I can put up with this disease. It's the same nonsense everyday no matter what efforts I put in. I feel life is moving on without me and I am stuck here!

I know that people do improve and are getting better, I just don't understand why I'm moving in the opposite direction.

I am really sorry for venting, but I don't have many friends who would understand this and there is only so much that my family can do as well.

Thanks to all for your help and concern, I truly appreciate it.
Posted 7/22/2014 3:11 PM (GMT 0)
Unlucky77,

I wanted to read through all the responses before answering to see what everyone else had to say. Rifampin's effects are different with each person but I can tell you out of every medication I was on (and I have been on a lot of different ones) this one was by far the worst for me. Besides having a total change in mood it also hurt to pee and I craved only carbs. I gained about 5 lbs just eating all the time. I felt depressed and had some anxiety. Just blahh most of the time. I was on this med three times in the years of treatment and always dreaded when I was put on it. I had bad achy pain and muscle twitches. It is a great medication and the last one I was on before stopping meds 4 months ago. I have been off abx since.
I don't have a lot of suggestions except that mustard seed baths and the sauna helped me. Sounds like you have a good detox plan. Try keeping a journal each day on how you are feeling and issues bothering you for you to share with your LLMD. This is a powerful abx and probably was the most successful in my treatment because I didn't really herx with anything else.
Hang in there. Hopefully it ends up working as good for you as it did for me.
Posted 7/22/2014 3:40 PM (GMT 0)
Hi Jessica,

Thank you so much for your advice. I don't really have any issues with Rifampin apart from it making my main symptom worse! Yes, before starting Rifampin, I didn't know what a herx is, but now I do! It is the only antibiotic that I have had major herxes!

I am hoping to see some improvements. I know it's still early days, but I am getting really freaked out by my main symptoms getting worse. I know that things get worse before they get better, but to this extent...? This disease is so confusing that nothing makes sense!

Thanks for your help!
Posted 7/22/2014 4:03 PM (GMT 0)
Unlucky77, I have been on Rifampin for about three months. Although the doctor started me on 600mg a day, I chose to start with 150mg a day. I was splitting one of the 300mg capsules and putting half of the contents inside an empty capsule. I did this because I had read about the effects of Rifampin and feared to go through what you are going through. At the beginning I also took the Rifampin with food so that it would not hurt my stomach and to dilute its effectiveness since taking it with food it loses 30-60% of its effectiveness.

I found the 150mg of Rifampin a day to be very effective. My Bartonella symptoms began to disappear and specially my neck pains and headaches that I was experiencing. My foot issues resolved and so did my vertigo. After two weeks I began to take it on an empty stomach and other than casual stomach issues, I did not experience any side effects.

After two months of taking 150mg a day I upped it to 300mg once a day on a full stomach and then a week later I started taking it on an empty stomach.

Being on 300mg once a day has brought back some of the fatigue and dizziness but not enough to be a major impact. as of recently, even those symptoms have dissipated most of the time.

I did notice that it takes a while for the body to get used to Rifampin but eventually it does. And when it does, you will be very happy of how well Rifampin can work (at least for me it did).

I should add that I am also on Amoxicillin (1000mg twice a day) and have recently added bactrim.

Good luck and hope you feel better soon.
Posted 7/22/2014 4:30 PM (GMT 0)
Hello Healing!

Thank you so much for your help! Im supposed to be on 600mg as well, but took 450mg and had a massive anxiety attack, so came down to 300mg.

I take the 300mg on an empty stomach, once per day. I'm also on Amoxicillin, supposed to be taking 6000mg, but can only manage 3500mg so far!

I hope the Rifampin works too! I know it takes time time to treat these diseases, but if I could get rid of this one symptom, then atleast, I will not be so depressed and debilitated.
Posted 7/22/2014 5:23 PM (GMT 0)
I am glad you have an appointment with your LLMD. Call sooner is you need to! Don't let it get worse. I don't think we're supposed to feel terrible. Maybe a little herx, but nothing to even make you think the "S" word. Hope you feel better soon!
Posted 7/22/2014 8:38 PM (GMT 0)
Unlucky77, I'm so sorry you are feeling this awful. When I was about 4 months into treatment I was taking mepron and felt how you do. My Dr took me off and said there are plenty of other things to take. I know we're all different but I've never had that kind of horrible reaction to the other abx. Tomorrow I'm supposed to start rifampin:( Thanks for sharing your experience with it so I can be informed. Good luck and please keep us posted.
Posted 7/23/2014 2:34 AM (GMT 0)
Mister Mike, I began to notice a difference a few days after I started taking it. What impressed me the most was the relief from the neck pain and the headaches. A few weeks before I started the Rifampin I was having the worst headaches that seemed to start at the back of my head. I think they call it Lyme meningitis. They were so bad that I had to take time off of work to deal with them. While off from work I started Rifampin and within a few days I began to feel better and after a week or so they were gone. Wanting to know if this was the Rifampin I stopped taking it and they came back the next day.

One other thing that it helped me with was a creaking noise in my neck and joints. It was so bad that I could hear my neck creak when I walked. It seemed to echo in my head so it was very uncomfortable. Rifampin took care of that too.

I added Bactrim a few weeks ago and it seems to work very well with both Amox and Rifampin. I say this because this past weekend I took my last dose of antibiotics on Thursday night and was symptom free Friday, Saturday and Sunday. I went back onto them Monday morning because I didn't want to take any chances. Monday afternoon I began to feel dizzy again from Rifampin, but today Tuesday the feeling went away. I should mention that I have been on Amoxicillin for a year now and this is the first time that I have gone three days without symptoms. So I hope that the three med combo that I am on finally works for me. I have been on Doxy, Azythromycin and Clarithromycin before with little to no success.
Posted 7/23/2014 6:43 PM (GMT 0)
Mister Mike, I am very sensitive to medicine so that may have something to do with Rifampin working faster. When I started treating Lyme with Amoxicillin I also saw improvements within a few days. However, about 5-6 weeks into treatment I began to feel worse. I thought that the Amoxicillin had stopped working. I then went over my symptoms and noticed that what I felt now were new symptoms and what I had before was still there but not as noticeable. I suspect that as Lyme began to retreat bartonella took center stage and what I was feeling were bartonella symptoms. Later I confirmed that what I was now feeling was bartonella. It is my theory that because Bartonella symptoms were my worse symptoms, that when I added Rifampin I felt an improvement faster. The pains were not gone but they were less severe.

Another example is the Bactrim. I could not stop the antibiotics (Amox and Rifampin) for a day without feeling the symptoms coming back. Last week I went three days without symptoms after stopping the antibiotics. I am hopeful that I have found something that works for me since Doxy, Azythomycin and Clarithromycin had no effect on me. I have not tried minocyclin but that is something that I would like to try this winter when the sun will be less of an issue.
Posted 7/24/2014 1:46 PM (GMT 0)
For me, Rifampin hit both the Lyme and bartonella HARD. It was very powerful. I've been in it since December. I hope you feel better soon!
Posted 11/6/2016 4:57 PM (GMT 0)
bluebyyou, I know this is an old post by I was wondering how long were you on Rifampin for? And did it get rid of your Bartonella?
Posted 11/6/2016 5:43 PM (GMT 0)
Not the same blue here but my llmd only wanted me on rifampin for 4 months.it can effect liver ..i am wondering if it can be pulsed? I have read different things . ..girlie and others have been on it much longer ..i am not sure one can get rid of bartonella ..i have a intercellular form.bacillicilus .rikky has thrown a lot at it maybe he will chime in...i cant seem to work up to dose ...it incapacitated my friend with erlichia and sent her to er ... btw ..
Posted 11/6/2016 5:54 PM (GMT 0)
This seems like an old post. Does anyone know how Unlucky is? And if she improved.

What confuses me most about lyme is HOW can taking medicine, to theoretically, improve, make one that much worse, to the point where they lose the ability to walk? Isn't it better at that point to stop the medication and try something else or go the herbal route? This sounds counterproductive in every single way. Am I missing something here?
Posted 11/6/2016 6:26 PM (GMT 0)
Huddie, it's usually due to an increase in symptoms, which could be herxing or an increase in bacterial loads. When taking any meds, it's usually a herx, but I've one that has lost the ability to walk 3 different times - it's scary, but for me at least it only lasts for a "short" time.

Unlucky hasn't logged on this forum since 3/2015.
Posted 11/6/2016 6:40 PM (GMT 0)
Thanks Trav,

Sorry I find everything overwhelming today. Well you will continue to be my inspiration in this journey. Three, times, wow I'm sorry.

Now I'm worried about unlucky. I'm a mother hen at heart. I hope she is ok and logs back in.

Well abx would increase bacteria load but they may increase toxic load, anyone sure that isn't it?

LYME = CONFUSION.From Lyme misfortune cookie.
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