-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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ktkdommer
Frequent Contributor (1K+ posts)
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posted
What are you using to detox? I'm on rifampin with no issues. Sorry I can't help.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I tolerated it well, but not everyone does. It can have some nasty side effects. What you're describing sounds more like a reaction to the medicine than a herx, at least to me.
Posts: 146 | From Maine | Registered: Aug 2011
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quote:Originally posted by tickbitt: What you're describing sounds more like a reaction to the medicine than a herx, at least to me.
- That's what happened to me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tricia386
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Member # 29623
posted
Well the headache was gone around 8pm last night. I only took one dose at 930 am. I didnt sleep well. But I didnt sleep well before the rifampin but who is to say.
My LLMD wanted me to start at 300 mgs for a week. Then add zith for 4 days on 3 days off. Then next week move up to 600... Then after about 2 1/2 weeks. Pule Tinidax 3 days on 4 days off.
.....sigh.....
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I had a rough time for the first four or so weeks on Rifampin, I wasn't sure if it was a herx or a bad reaction to it. I seemed to have turned the corner with it so in my opinion, it's worth it, for me it was a herx.
Posts: 845 | From Northeast | Registered: May 2011
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Jane2904
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posted
Our daughter had increased headaches for the first week or so on Rifampin.
Hope you feel better.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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tricia386
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Member # 29623
posted
Its so hard to tell...herx...side effect...etc.
Can I take anything for teh headache. Motrion and tylenol...
Where was your headache located. Mine seems to be in the fron and my sinus's
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I was taking 2 Aleve, I had that same headache. I haven't had it for a week or so now.
Posts: 845 | From Northeast | Registered: May 2011
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tricia386
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posted
did your gums hurt.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
No but my bones and muscles did, and was sick to my stomach and couldn't sleep. I did have a period where my jaw was burning at the joint. Also my hands and feet would ache. It has gotten sooo much better.
Posts: 845 | From Northeast | Registered: May 2011
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tricia386
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posted
I have so much pressure in my sinus right now and I am kinda dizzy. and my neck hurts
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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posted
sounf familiar?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Hey Tricia, yeah, I was dizzy too, still am sometimes. My neck mostly bothered be when I was killing Lyme. Rifampin hits Lyme too. And those sinus headaches, or what feels like a sinus headache are tough.
Posts: 845 | From Northeast | Registered: May 2011
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tricia386
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posted
ugh....only day 2.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
Rifampin herxes are from hell, I'm sure of it. But changed my life! I was very ill with bartonella being a major role. (I also have Lyme, and Mycoplasma, both of which are also treated with Rifampin + Zithro.) I was 95% bedbound, otherwise in a wheelchair, and on supplemental oxygen. After nine months on Rifampin (six of those also on Zithro), I'm not even as much as housebound, I'm out of the wheelchair, and I was able to give back the oxygen concentrator. My bart flares are not gone ENTIRELY yet, but are very mild in comparison to what they used to be. I was on 600mg for two of those months when I saw the most improvement. I'm on half that dosage now, still improving but at a slower pace.
The kind of headaches I got would never be touched by something like Tylenol and Ibuprofen; perhaps ask for something stronger from your doctor if they are terrible. I take Vicodin and ibuprofen for mine.
HOWEVER.
quote: "Then add zith for 4 days on 3 days off."
You ABSOLUTELY cannot do this! Zithro has a very high rate of creating resistant bugs, and it does this when the dose is lowered or stopped temporarily. With just a few times of pausing it, the bugs will become resistant to it and it will not work anymore. You CANNOT take it off and on like that--if I were yuo I'd inform your doctor! I had to pause it twice in the past six months and it stopped working, so now I have to take Bactrim instead. These things DO happen.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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tricia386
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posted
Ya...nothing helped the headaches but a dark room. I am having such bad insomnia. well I fall asleep then I wake up al through out the night. I dont know the last time i have slept through out the night.
I just want to cry
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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tricia386
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posted
Ugh. I go to one of the top LLMDS you think they would know this stuff...
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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quote:Originally posted by tickbitt: What you're describing sounds more like a reaction to the medicine than a herx, at least to me.
- That's what happened to me.
Me too!
Posts: 964 | From san diego | Registered: Oct 2009
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tricia386
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posted
well today is day three and I have increased anxiety as well as crying jags. My moods are shifting fast
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
rifampin hit me hard when i took it years ago, after having chronic bartolella symptoms for perhaps a year prior..
it hit hard, it hit fast, it lasted two weeks or so, no more than three.. and it knocked the hell out of bart.
i had a toddler on it with me at the time, and i remember distinctly we were both raging like lunatics. yelling about anything we had to deal with..ect.. totally uncharacteristic, nuts, almost comical anger. crying jags too.
pretty sure there were headaches. but after the tx, the previous moderate mood stuff and depersonalization was gone for good.
so, in our case, it helped allot. i think a true herxheimer should hit relatively early and last a matter of weeks at the most.
detox, detox, detox, support, binders.
good luck, mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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tricia386
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posted
Thank you. My anxiety is through the roof. I cant sleep I am on edge and nervous all the time. being startaled. Then I just start crying. Shins are burning like Hell...
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
I feel all your symptoms for sure tricia but Ive never been on Rifampin..acually that is a lie I was on for maybe 3 weeks then I switched LLMD's . Who do you see? I see a Dr. Mc in New York State.
Can you take an ativan or half of one? That always seems to help calm down the anxiety and the nervous system overload! PM me or email me if you want to chat!
posted
I just started Rifampin about two weeks ago. I knew about how hard it could be, watched my daughter go through it and talking to others. I tried it once a couple years ago and bailed after one week.
I asked my doc if I could start slower than she wanted and work up slower. She said ok, so I started with 1/2 cap and have worked up to a cap in two weeks, on my way to two caps.
I've been anxious and emotional, but it is controllable.
So many people talk about how much they were helped by this drug, if they could get through the nasty herxes.
I've got tons of detox and binders on board - I hope you do too!
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Ugh i just want to sleep again. I cant fall asleep or stay asleep at all.
Its controllable but sometimes I just wanan cry bc I feel like this. It makes me feel hopeless
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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