posted
I think the prednisone helped whatever that was...herx or near death experience.
Is that "normal"?
I'm still itching like crazy and have tried the baking soda bath. I seem to have a rash on my chest now.
The hip/leg bone pain diminished lastnight and I finally slept. It was so horrible, I was wrthing in pain and just wanting to die.
So tomorrow I am suposed to start rifampin. Should I be scared?
Does anyone else do the b12 shots and if so, when do you give them? Morning?
Thanks! Kimberly
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I would have been much more scared of the prednisone. We lymies aren't good with steroids. Stay away if you can!
I've been on Rifampin 3 months and had primarily emotional herxes. It's a "little" scary but no scarier than the disease itself.
Are you treating Bart? How much is your first dose of Rifampin going to be? If you are treating it for Bart, it should be used in adjunct with another abx. I take zithro and Rifampin to treat Bart.
posted
Hi Clarissa, When Hubby called the doctor after a day and half on the doxy, I was willing to take whatever he thought to "fix" me. I don't know why he chose prednisone but it did keep me from spiraling over the edge, as I was quite literally hanging on to the headboard out of my mind with pain. Never experienced anything like it.
He is treating me with the rifampin for Barts and I'll be on the doxy for another 6 weeks Lord willing. Does that sound right? I have lots of other prescriptions to try but he said to start with those.
Blessings, Kimberly
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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posted
first dose: 150 -300 mgs twice a day. I guess I should start on the lower end???
Can you tell me why the steroids are bad for us? I haven't any info on that. Thanks!
Blessings, Kimberly
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Kimberly,
Rifampin and Doxy is definitely a known combo for Bart.
Yes, do a slow ramp up on the Rifampin. My LLMD started me on 900mg (many board members were horrified)...now I'm on 600mg daily.
I'd start with 300 mg and then make your way up to 600mg which seems to be the standard dose to kill Bart.
I cannot tell you exaclty why steroids are bad for Lymies. I think, somehow, they suppress the immune system. Why don't you do a search for steroids or start a new post in MEDICAL section saying:
Why are steroids bad for Lymies?
Explain that you're new in the comment area and would like to know why steroids are not good for people with Tick Bourne Diseases.
Hope that helps!
Good luck on your first day of Rifampin. Don't be scared...picture it KILLING the Bart...because it WILL! I can definitely tell a difference in the 3 mos I've been on it..it gets easier.
I guess I will have to up the magnesium even more.
I have muscle spasms alot now even so.
The bladder thing... this is weird but for a while now, I've been not able to make it to the potty from the kitchen on some days... it's embarrassing but true and then in this last week maybe, I can't go!
I woke up twice last night with a full bladder due to drinking a large glass of water with my doxy and all and I'd go in the bathroom and have to PUSH but still couldn't go... not like I didn't have to go but even with turning on the water and straining it wasn't coming.
It took me a while becase I knew I wouldn't sleep with that full of a bladder but still even when it does "switch on", I have to hold great pressure to keep the flow going... that is SO weird to me.
Sounds like a prostate problem but I'm a girl :-) I'm not having UTI like symptoms of burning or irritation either.
Has this even happened to anybody?
Thanks again, Kimberly
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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posted
The bladder....what other meds are you on??
Prednisone is really BAD for Lymies, but I will admit that I had to take some once for a very severe and painful herx as you described.
You want to get off of it as soon as possible...but follow the instructions of your LLMD.
Rifampin....definitely ramp up. I would begin with the lowest dose possible, especially since you've already had a very severe herx.
That stuff can really knock a punch!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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savebabe
Frequent Contributor (1K+ posts)
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posted
Rifampin gave me horrible psych symptoms.
I prefer levaquin over rifampin to treat bart.
Posts: 1603 | From ny | Registered: Aug 2006
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disturbedme
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posted
Some people have really bad herxes with Rifampin or haven't had good experiences with it, but I have. Rifampin has gotten me back to around 70% so far.
I don't really remember herxing very much off of it either. Maybe a little, but not too bad at all.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
As far as other meds.... I'm only on synthroid, doxy and rifampin now. I take a lot of herbs and such though.
What all is a herx? I mean, I feel very disoriented, weak, spacey, like my head is underwater...I have some pain behind my eyes and my body hurts...my skin hurts to the touch but I am not in any way in pain like when I first started the doxy. Is this still a herx?
I'm still itching like crazy too. Is that "normal"?
Thanks everyone, Kimberly
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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Clarissa
Frequent Contributor (1K+ posts)
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posted
Kimberly,
Most every symptom you described is most likely a herx. "Herx" is an exacerbation of your pre-existing symptoms, and sometimes, some additional ones, as well.
Goto http://www.wildcondor.com click on Lyme Links and scroll down to Jaques Herxheimer Reaction...it will explain it better and in more accurate detail!
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