posted
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.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
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?
Posts: 134 | From NY | Registered: Aug 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- 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
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6444 | From Louisville, Ky | Registered: Jan 2002
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posted
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.
Posts: 134 | From NY | Registered: Aug 2009
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posted
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?
Posts: 79 | From Northeast US | Registered: Sep 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
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?
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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posted
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?
Posts: 134 | From NY | Registered: Aug 2009
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IgG Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
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.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 80% +/- most days. Posts: 3124 | From Massachusetts | Registered: May 2010
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posted
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.
IgG Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Bcb and TN - keep us posted on your progress. I would also have been on the same schedule as you both but I had to stop Rifampin due to sever stomach pain (had started before Rifampin). Once I figure out what is causing the stomach issues, I'll go back on.
Even 2 days of a small dose I could tell it was hitting something hard.
The anxiety is the tough part. Also, I need to sleep and I am doing my best to stay away from sleep meds.
thanks for the posts - encouraging to hear.
Posts: 2232 | From USA | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Will do...FYI..I had stomach pain / discomfort when I started to. I was diagnosed with Gastritis / GERD back in March, before my lyme dx. Little did I know that Bart causes Gastritis / GERD.
TN Kim...WOW 9:00AM!!! That must be luxurious. I get a 5:30 am wake up call every morning from my 6 month old daugther.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 80% +/- most days. Posts: 3124 | From Massachusetts | Registered: May 2010
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janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
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
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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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
YES! In fact I started a thread asking about chills and the sensation of feeling like you "needed" to have a chill but couldn't!
I only got one or two responses. I also have had bad headaches. Woke up with a pressure type headache yesterday morning!
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