RZR
Frequent Contributor (1K+ posts)
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posted
If side effects of Rifampin do not go away, can it do harm if you stay on it? I can tolerate it, but have symptoms I never had before taking it such as lots of muscle and bone pain.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
jennie46, there is tons of great post about rifampin and effects on many, if you would just use the search button.
You will find years of experiences. Do you know how to use the search feature of this site?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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I had bad muscle pain before starting Rifapin that went away in the first month.
My doctor warned me that it may come back in the form of a prolonged (months) herx. I thought no way.
Well, another month later, I was in just as bad pain as I was before using Rifampin.
It took about 2 more months for the pain to go away and stay away.
I can't say if your pain is a herx, but that was my experience.
Talk to your doctor. My doctor sees this pattern often.
Posts: 819 | From East Coast | Registered: Apr 2009
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RZR
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by map1131: jennie46, there is tons of great post about rifampin and effects on many, if you would just use the search button.
You will find years of experiences. Do you know how to use the search feature of this site?
Pam
What is your problem?? I simply asked for input.
I do know how to use the search button...so I am not as stupid as you imply!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by kitty9309: jennie-
I had bad muscle pain before starting Rifapin that went away in the first month.
My doctor warned me that it may come back in the form of a prolonged (months) herx. I thought no way.
Well, another month later, I was in just as bad pain as I was before using Rifampin.
It took about 2 more months for the pain to go away and stay away.
I can't say if your pain is a herx, but that was my experience.
Talk to your doctor. My doctor sees this pattern often.
Thank you so much. You response was very helpful.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I wasn't asking if you were stupid? I was asking if you knew how to use a great feature of this site.
I have a problem with using this site as a chat group. It is being flooded by simple questions and this is causing some newbies that need help and guidance to the 3rd and 4th page.
I realize you have started a new protocol and have concerns....but must everyone ask every little question that comes to mind without doing your own research?
After you've done your research you will find you've also found advice/answers on many of your questions.
Also many general support questions can go over to the General treads to also help with the heavy traffic in the Medical section.
Thank you, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I had major joint and muscle pain while on rifampin. I had a really long herx while taking it. I feel that rifampin really helped me.
My doctor was very careful to monitor my liver enzymes while taking though. My sister had to go off because of liver problems. She got real sick with stomach aches and nausea. So maybe check with your doctor too.
I don't see any problems with asking this question here. Maybe she could find her answer with a search, but probably faster this way plus she might get newer more relevant answers this way. It's getting to the point where people are stopping coming here because they are afraid to ask questions. I know this to be a fact because many have said so on a private lyme board I am a member of.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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I do not think muscle and bone pain would be considered side effects of rifampin. I think they would be considered herx symptoms.
Hubby has had muscle and tendon aches while taking factive and levaquin. Those problems continued when he added in rifampin. And they continued after he stopped the levaquin.
But now his doc has changed his meds and he is taking everything in the evening instead of one antibiotic with each meal. It has been about a week on this new protocol and his muscle and tendon pain has greatly decreased. I have not gotten around to changing his supplements as I planned to do.
Hubby's LLMD said he thought that the bartonella was hiding out in his tendons and ligaments and I think the doc was right. I think the new dosing on the meds means a higher dose of meds is getting to the infection. I do not think he would have had such a decrease in pain this quickly just from the body healing if he had actually had muscle or tendon damage from the other antibiotics.
So yes, I think the pain will go away when the infection load goes down. But it may take some experimenting with meds to find the right combo.
Hubby is on Minocycline, Zithromax and Rifampin.
As twingirl said -- elevated liver enzymes would be the most common drug side effect from rifampin.
Also wanted to add that hubby's muscle and tendon pain actually improves with exercise. He does wrap his ankles when he takes his walk -- about a mile a day. And he has some stretching exercises he does lying in bed that his physical therapist suggested. But if he has to ride in the car long distances or just sits around all day he is much more stiff and sore.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by twingirl: I had major joint and muscle pain while on rifampin. I had a really long herx while taking it. I feel that rifampin really helped me.
My doctor was very careful to monitor my liver enzymes while taking though. My sister had to go off because of liver problems. She got real sick with stomach aches and nausea. So maybe check with your doctor too.
I don't see any problems with asking this question here. Maybe she could find her answer with a search, but probably faster this way plus she might get newer more relevant answers this way. It's getting to the point where people are stopping coming here because they are afraid to ask questions. I know this to be a fact because many have said so on a private lyme board I am a member of.
Thank you! This has also been truly helpful.
I am worried about liver monitoring. My PCP did this for me a week ago, but said I should be fine until my next appointment in May. I am really scared to wait that long.
I admit I have asked lots of questions about Rifampin, but these couple of answers here have helped me more than anything I had answered before or anything I found with the search feature.
Thanks again, Jen
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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map1131
Frequent Contributor (5K+ posts)
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posted
That's just it twingirl, it's not faster to just post any question. It takes alot of time for others to post to everyone reaching out for advice.
Everyone here is ill or has been or has a loved one they are caring for that is ill. They are here to help others. But having to repeat the same answers is very time consuming.
One will get sooooooooooo much info by using the search button. How can the answers be any newer or more relevant than 7 yrs of been there, done that, this is how it went for others?
There's a difference between a newbie and someone that has been here for 8 months. Everyone that comes here in the beginning is overwhelmed with info, links, medical abstracts, seriousness of lyme, and disbelief.
I would bet some people have perceived lymenet rudeness due to lack of responses, asking and reminding others to use the search button, or some that copy and paste url after url of info to those asking questions.
So no it's not faster or better to slam the board. For anyone.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Sounds like I am no longer welcome to post questions here. I am truly sorry if I offended anyone by asking too many questions.
If anyone knows another forum where I can get help, please PM me. I still have a long journey ahead.
You know...we all have enough to deal with without bickering over whether something should have been searched or a question asked.
I have done nothing but cried since reading this post. I thought this was a place I could come to for support, not bashing.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
jennie, you are welcome to pm me any time - I have been in Lyme and co treatment since 2005, and will share experiences.
Although getting the collective wisdom of more people is always better than one person's perspective.
Rifampin was rough for me, as you probably remember, so it's good you are researching and looking for answers to your questions.
If you need anything, don't hesitate to pm, 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
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posted
quote:Originally posted by cactus: jennie, you are welcome to pm me any time - I have been in Lyme and co treatment since 2005, and will share experiences.
Although getting the collective wisdom of more people is always better than one person's perspective.
Rifampin was rough for me, as you probably remember, so it's good you are researching and looking for answers to your questions.
If you need anything, don't hesitate to pm, okay?
Thank you so much! I really appreciate your kindness...I sure could use some of that today!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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map1131
Frequent Contributor (5K+ posts)
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posted
Jennie, under no circumstances was I saying you could no longer post here or not wanted or anything like that. Absolutely positively that is not my point. Please read again what I'm trying to convey.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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djf2005
Frequent Contributor (1K+ posts)
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posted
All Pam is saying is that it's sometimes frustrating for veterans to see the board jammed w/ newb questions that could have otherwise been answered by searching.
However, LN has been for sometime and will most likely continue to be the same questions asked in different forms repeatedly. It's just the nature of the beast.
Please feel free to post, just keep in mind it's sometimes better for everyone (and the board) to try to find your answer first.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I don't think we should ever discourage someone from asking questions. This board is for support and people come here looking for and needing that support.
Jennie did say above that she used the search but obviously she didn't find quite the answers she was looking for.
And even if she didn't use the search that is ok too. Clearly she has been having a really difficult time lately and needs some support/answers from us.
We have to realize that sometimes when people are having a really difficult time they just can't use the search. Sometimes when you are in a really bad spot using the search and trying to read and sort through all that information can be too overwhelming. You just need some answers but aren't capable of sorting through all that info. I have been there myself.
So I think we need to cut people some slack. I understand that some people might get frustrated seeing posts about the same stuff but that will probably always happen. We are all dealing with the same illness so naturally we will all be asking a lot of the same questions. And sometimes people just can't deal with using the search or are having an extra hard time and just need some extra support. I think we just have to show a little patience.
Jennie...I am so sorry that you have been having such a hard time lately. I am so glad though that you have found at least a few answers here. I hope you will keep posting. One of the worst things is feeling like you have no support or no one you can talk to when you are having a hard time. I certainly wouldn't want you to feel that way.
Hang in there! Pam :-)
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Jeannie-Please don't feel like you have to go somewhere else. I was reading maps posts, and I don't think she was trying to bash you.
We are all in this boat together. If we don't have each other, we're in trouble because most people don't understand this disease.
I'm saying a prayer for you now...
Christie
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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My doctor checked my liver enzymes every 2 to 3 months. Hopefully yours will be OK until May. I believe you will know it if yours get elevated. My sister became very ill, couldn't eat and was nauseous. It felt different than her herxes.
I also take milkthistle for liver cleansing. It is cheap and very helpful. Also avoiding other things that can effect liver like Tylenol while on Rifampin should help. I stopped my every day diflucan and went to twice a week while on it just as a precaution.
I don't come here often, but if I see a question from you that I think can help with, I will be sure to post a reply.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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posted
Some ppl (me) are too ill to even be able to keep up with this board, or to spend the time searching for any question they have.
I try to read when I can, but fearful of posting most of the time. Seems I never get many responses anyway. I think some ppl live on this board, so therefore do not miss anything and seem to know all the answers. Well, some of us don't.
Posts: 847 | From upstateNY | Registered: Dec 2007
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by twingirl: Jen,
My doctor checked my liver enzymes every 2 to 3 months. Hopefully yours will be OK until May. I believe you will know it if yours get elevated. My sister became very ill, couldn't eat and was nauseous. It felt different than her herxes.
I also take milkthistle for liver cleansing. It is cheap and very helpful. Also avoiding other things that can effect liver like Tylenol while on Rifampin should help. I stopped my every day diflucan and went to twice a week while on it just as a precaution.
I don't come here often, but if I see a question from you that I think can help with, I will be sure to post a reply.
Thank you for being so kind...I really appreciate it!
That is very helpful info about the diflucan also. I have been battling yeast quite a bit lately.
I thought liver enzymes should be checked more often while on Rifampin, so I was wrong about that. I should be okay until May then.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by kidsgotlyme:
Jeannie-Please don't feel like you have to go somewhere else. I was reading maps posts, and I don't think she was trying to bash you.
We are all in this boat together. If we don't have each other, we're in trouble because most people don't understand this disease.
I'm saying a prayer for you now...
Christie
Thank you...Nice to know we still have so many nice people here!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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quote:Originally posted by Pam08: I don't think we should ever discourage someone from asking questions. This board is for support and people come here looking for and needing that support.
Jennie did say above that she used the search but obviously she didn't find quite the answers she was looking for.
And even if she didn't use the search that is ok too. Clearly she has been having a really difficult time lately and needs some support/answers from us.
We have to realize that sometimes when people are having a really difficult time they just can't use the search. Sometimes when you are in a really bad spot using the search and trying to read and sort through all that information can be too overwhelming. You just need some answers but aren't capable of sorting through all that info. I have been there myself.
So I think we need to cut people some slack. I understand that some people might get frustrated seeing posts about the same stuff but that will probably always happen. We are all dealing with the same illness so naturally we will all be asking a lot of the same questions. And sometimes people just can't deal with using the search or are having an extra hard time and just need some extra support. I think we just have to show a little patience.
Jennie...I am so sorry that you have been having such a hard time lately. I am so glad though that you have found at least a few answers here. I hope you will keep posting. One of the worst things is feeling like you have no support or no one you can talk to when you are having a hard time. I certainly wouldn't want you to feel that way.
Hang in there! Pam :-)
AMEN! Thanks for saying this. I was going to post the same thing, only you said it better!
Posts: 819 | From East Coast | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I have used the search button often. Sometimes there are answers and sometimes there are not.
Maybe there is more of a feeling of support when you are doing it live.
Posts: 2232 | From USA | Registered: Aug 2009
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I can see that if people never use the Search button, many experienced Lymenetters may feel frustrated and that they can't keep answering on the same topics.
On the other hand, many have already used Search and want to see if there's any newer or different input on the topic.
Sometimes too, the poster is in a bad place and needs the reassurance or support of realtime answers.
Jennie, on Rifampin I had a lot of muscle pain for the first few weeks, especially in back and shoulders...hard to say if it was a side effect or Herx.
Later on, taking it with Tindamax and Zithro, I developed a bad case of hives.
You could try Candida Yeast Management [NSI from Vitacost] when you're not taking Diflucan,
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
My 3 year old started Rifampin a couple of months ago. She herxed on it for the first 4 weeks. She complained of headaches and shoulder pain, and woke up grumpy every morning. Now she has no pain and wakes up happy.
When my 5 year old took it, he would tell me his bones hurt all over. This worsening lasted 2 to 3 weeks for him.
I think it is a herx.
And I agree with the others - you should never feel you can't ask a question. The search button is great to get additional info, but sometimes you need a specific question addressed. I have been told to do a search before and it can be annoying, depending on how it is worded.
hang in there!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I used the search on Rifampin recently. I have found this new thread to be informative - thanks everyone.
Since starting Rifampin, I am also having a lot more neck/shoulder/back muscle pain. I'm on a 30 day course of Diflucan at the same time, and also concerned about my liver.
Hang in there, Jennie.
Posts: 57 | From western Virginia | Registered: Apr 2009
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posted
Anyone have chest pains/tightness with Rifampin? What about nausea?
I have been experiencing nausea and as of last night some chest pain/tightness. Not sure if the chest discomfort is related to rifampin or not since I have had similar issues before.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Thanks to all for the suppport and kind words.
Rifampin has been really hard on me. I was determined to stick with it no matter what. However, after talking with my LLMD today, he wants me to discontinue it and focus on getting the yeast under control. He does not like to give diflucan with Rifampin because they are both tough on the liver.
I don't know if I have bart or not. LabCorp test was negative. Only symptoms I have that could be bart related are neuropathy, mild sore soles, sore hips and ribs. Could these all be related to no treatment with a cyst buster yet?
LLMD is prescribing flagyl 250mg three times a day with Biaxin 500mg twice a day. I have taken Biaxin before and love it. Flagyl...I have heard can be tough, but it has to be done.
We may add Bactrim DS to this protocol in a month or so, if needed. How will I ever know if I need bart treatment or not?
Wish me luck!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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