Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Forgive me for starting a new thread... I just really need feedback.
Seems like every day gets worse... I have been on the same half dose for a week and a half. I took the pill at 7am. Starting at about 11 I am racy, shaky, and weak. If I push through and do what I have to (like grocery shopping) I get even shakier--- I am not visibly shaking-- But I feel like I am shaking. This happened yesterday too. By late afternoon i feel a bit more normal. Today is worse than yesterday. I have not changed the dose. Not sure I could work like this tomorrow.
I am not sure what to do... Llmd is not in on Monday's... I know you can't mess with rifampin in terms of skipping it cause it can become resistant... And I know it has been so good for others.
This has not been like any other herx I have ever had...
Advice please. I feel so shaky.
Posts: 1728 | From USA | Registered: May 2011
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Have you been on rifampin for a week and a half total or have you worked up to that over a longer period of time?
If you started at a half dose, it's just my guess, that your dose is too high. Or, maybe you worked up too fast.
Even going slowly, I had a terrible herx.
Maybe you could back down tomorrow to a lower dose.
Hope you wake up tomorrow morning and don't feel as bad.
I was told to go off it by my PCP and have been off for 8 days. I regret it and think my PCP didnt know about it being bad to stop and start.
She "dumped" me and told me to go back o LLMD. I'll call tomorrow.
Posts: 1297 | From USA | Registered: Dec 2002
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Kudzuslipper
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Member # 31915
posted
Marz, I was supposed to build up to double that. but I have been on this same dose for a week and a half. The only difference is the time of day I am taking it.... First thing in the am instead of 2 hours after breakfast. And also, I am putting it in a clear capsule (red dye allergy) instead of applesauce.
Does this sound like a herx or a drug reaction?
Posts: 1728 | From USA | Registered: May 2011
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Rifampin had a very bad effect on my blood sugars and apparently that is very common. Shakiness can be a sign of blood sugar issues. Consider taking your blood sugars at various times during the day to see if this is an issue.
I had to stop because of blood sugar, weakness and other issues with rifampin.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
When I first started rifampin, I took the whole therapeutic dose for two days. It wrecked me.
I stopped for a day, and then I started with 1/4 dose--opened the capsule--each day for a week. That was barely manageable.
It took me about 6 weeks to get up to the therapeutic dose. I can't stand that racy, shaky, weak feeling. To me it feels like I am hyped up on tons of coffee.
It is getting better. I am starting my 7th week on a therapeutic dose. I still have bad insomnia, but the shaky, wiry feeling is lessening some.
I hope you're feeling better soon
Posts: 331 | From West Coast | Registered: Jan 2012
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posted
I just restarted Rifampin this morning. 2 hours after the dose, and breakfast, my blood sugar was 3.7. I took 3 tsps of Dextrose in water. 10 minutes later I was feeling worse. My blood sugar was 3.3, despite having just taken sugar. I took 5 tsps dextrose in water and after a few minutes started to recover.
For me, this reaction to Rifampin is related to Chlamydia Pneumonia. The rapid die of with Rifampin is because of secondary Porphyria, associated with CPn. http://www.cpnhelp.org/secondary_porphyria_what_
I also have Lyme. Having both CPn and Lyme can be a confusing picture.
Posts: 250 | From canada | Registered: Oct 2007
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
So should I skip it tomorrow until I can speak with llmd on Tuesday? Or just take a smaller dose?
Terry, interesting... I have never had blood sugar issues... But that is what it felt like from what I've read... And I have been craving carbs...Like pure sugar....jelly beans. So bad.
Anne....just reading that it must be hard treating both at least diet wise.... The rifampin does have me craving carbs big time... And that site said 70% simple carbs... But that's bad for Lyme and my weight.
Posts: 1728 | From USA | Registered: May 2011
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posted
I started treating in February of this year. I lost a lot of weight between February and August--about 40-50 pounds. I had the extra to lose, though. Then I started with rifampin.
I would like to lose 10-15 more, but that doesn't seem to be happening.
Since being on the rifampin, my weight loss has completely stalled. I am trying not to gain any weight back, but . . .
the sugar cravings are bad. Jelly beans, yum, my favorite. I may dream about those if I can get to sleep.
I am trying to maintain my same diet just add more veggies when hungry--hunger is so weird for me because I wasn't hungry for the first 6 months of treatment.
Even though I am eating the same number of calories per day as when I was losing weight, I have not lost any since rifampin.
Posts: 331 | From West Coast | Registered: Jan 2012
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Kudzuslipper
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Member # 31915
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Deblyn, and some people lose weight on rifampin! and I can see why cause you're so racy...but the hunger is unreal. and I can't afford to gain.
Congrats on your weight loss. sorry it had to be because of lyme. but at least there is something good came from it. I cant's say I have lost my appetite through any of this. try not to think about jelly beans! they were my dads favorite treat he would hide bags of them so he would always have them when a craving came... but 5/10 beans did it for him. not the whole bag.
Posts: 1728 | From USA | Registered: May 2011
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posted
No, oops, I meant I DO NOT lose on rifampin--sorry for the confusion. I lost prior to starting rifampin.
As soon as I started taking rifampin, I stopped losing weight. And now since I'm taking rifampin I am trying so hard not to gain back any of the weight.
Jelly beans, aside from chocolate, are the best. They probably aren't so bad if I could stick to 5-10 only. Posts: 331 | From West Coast | Registered: Jan 2012
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Kudzuslipper
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posted
Debilyn, I undertood. I think it's amazing you are not gaining on rifampin. I have never been so hungry in my life... Even when dieting!
I lost the rifampin battle. It was just too scary. This is the first time I have been scared by a side effect. Even my painful herx's, and my depression from flagyl didn't really scare me... This was just so weird. Llmd was in today and told me to just go back to Biaxin and amantidine. Still racey, trembly and ravenous today...hopefully tomorrow will be better. And hopefully I go back to feeling as good as I had been before the rifampin... And hopefully i am not as ravenous.
Thanks everyone for being there for me while I waited to be able to talk with llmd.
Posts: 1728 | From USA | Registered: May 2011
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surprise
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Member # 34987
posted
It took me a few full days to clear the rifampin.
Left me with a big yeast issue, which I had under control previously- back on diflucan.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Marz
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posted
Kuduzuslipper, I was very depressed about having to stop after 5 weeks of hell on rifampin because I had been feeling improvement in bart symptoms towards the end.
Without help with extra anti-anxiety, sleep and thyroid meds, I could not make it. And my MD didn't want to increase those meds.
But I'm hopeful now about trying something else. A new ND said she could get A-bart for me, but I'm also considering Zhangs.
I guess there's more than a couple of us who have joined the "failed rifampin club."
It helps to know I'm not alone!
Posts: 1297 | From USA | Registered: Dec 2002
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Kudzuslipper
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Member # 31915
posted
thanks guys. i had a bad reaction after 4 months on cipro, but until then I did well. in fact my best months were on cipro. so maybe I will ask to add that back in to the mix.
I guess the question i have is- does my reaction to rifampin say anything about an underlying condition?
annelet, i tried to understand a lot about secondary porphyria-- what exactly is it? It's symptoms are different than porphyria right? would my reaction mean I have CPN? diabetes? or just a reaction?
Posts: 1728 | From USA | Registered: May 2011
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CD57
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Member # 11749
posted
Rather than saying you lost the Rifampin battle, how about going back on it at half dose, and working your way up? My doc says this really works, that too many give up after the initial badness on Rifampin. Do 300, then 600, etc.
Posts: 3528 | From US | Registered: Apr 2007
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desertwind
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Member # 25256
posted
I had problems with Rifampin - but not in a herx sort of way.
I got reactive hypoglycemia from it and after a week developed itchy hive like rash on my arm.
My understanding is that it can cause issues with blood sugar. Mine tested low while on it and I NEVER have issues with blood sugar.
Went off and in 3 days rash gone and hypoglycemic reactions gone as well.
Just my experience...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Kudzuslipper
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posted
CD57, I did work up. perhaps not slow enough. I started with 150, and in a few days 300-- and that is where I was. and after a week and a half, each day got worse. I never got up to my full dose.
dessertwind, that sounds like what happened to me... I did not get tested though.
I feel as though I may be ready for medication break. I just feel toxic.
Posts: 1728 | From USA | Registered: May 2011
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Kudzuslipper
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posted
Finally back to normal (or Lyme normal) what a scary drug. Thanks for giving me support and info.
Posts: 1728 | From USA | Registered: May 2011
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posted
May I ask which infection rifampin is used for and also which medications can be used in its place? I don't have rifampin on my protocol at this time and have been in treatment five months. Thanks and good luck to you adjusting to it!
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