posted
I searched and it seems there are a lot of herx type questions when people start rifampin.
My LLMD wants me to add this to my current meds
zith omnicef cryptolepsis artemisinin
now Rifampin for Bart
Is it typical to stay on all of these? Has anyone IMPROVED from rifampin or is it just more hell?
Thanks for your input
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I am improving on rifampin. More relaxed, I've had more energy.
-------------------- 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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posted
surprise I am glad to hear that. I read some of your previous posts and it seemed like the herxing was pretty bad.
My llmd says at least 2 weeks of really bad herxing. I don't know how I will do that, but if I know it is worth it...that will make it much better
Thanks for your input hoops
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I am on day 5 of Rifampin.
Also upped my Byron White and increased my Nystatin at the same time.
Day 5 at full dose and I am getting what I always attributed to Babs symptoms - minus the sweats - no Babs sweats anymore!
Anyway, my symptoms since starting Rifampin are; *Occipital Neuralgia flare up *Severe jaw pain *Feels like someone poured boiling hot water on the top of my skull *Head feels numb and internally swollen *Top of head REALLY sore *Pain radiating into front of head /behind eye - like sinus stuff *Achilles sore - both *Headache/pressure
I am also on Doxy and Plaq. with lots of supp.'s. Finished Babs treatment a few weeks ago and now starting on Bart. If Babs symptoms come back I will be adding back Zythro and ART.
I have no idea what symptoms are Bart as I never really thought I had that.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I started Rifampin, while continuing the Bicillin shots I've been on for months, also on Samento drops and Diflucan.
Felt the herx w/rifampin- doable, but let me know I had Bartonella left/back-
But then added Levaquin on day 5 of the Rifampin- that's when I went overboard- tried to tough out both together
for another 5 days, then said forget it-and just discontinued the Levaquin. And now having better days (on full dose rifampin 2x a day)
-------------------- 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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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes...huge!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I love, love, love rifampin. Like Joysie, I had my biggest gains on this. I explain that I have gone from feeling like a sick person, to feeling like a normal person who sometimes has some weird symptoms.
I still have rib pain at times, low grade fevers when overtired, and wrist inflammation. Otherwise, I am feeling VERY close to normal.
I am a teacher, and my students and colleagues have all commented that I appear to be myself again, with seemingly limitless energy in class and staying on top of my work.
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
I cannot thank you enough for taking the time to provide your encouraging responses.
I have a couple of questions
1. How long did it take to feel positive effects? 2. How badly did you herx? 3. Did you have a positive bloodtest for Bart? 4. What symptoms do you feel it hit?
Thank you again. This makes me feel so much better about using it!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i herxed too bad with full dose-i became suicidal. i had to break pills into crumbles...take a tiny piece then another and have a friend watxxh me closely. in 2 weeks i got up to full dose and then it was easy. i think i was n 4 months. not sure when i saw improvement was it was very dramatic...lumps and abd pain gone
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I had the worst herx of my life because I started at the full dose.
So I started with 1/4 dose ea day and built up by 1/4 dose ea week. At full dose now and doing MUCH better.
I did not have a positive Bart test, but I have a Bart rash on my arms.
I started feeling better on Rifampin pretty quickly once I got the dosing straightened out--a couple weeks on full dose.
Posts: 331 | From West Coast | Registered: Jan 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I took rifampin with doxy. I felt better on it in three days than any other med combo I've been on. It hit lyme and bart for me. We are all different though. It's really hard on some people. My herxes were normal when I was on it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Rifampin did nothing for me, but then I don't think I have bart.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
. How long did it take to feel positive effects? 3-6 weeks in little fits and starts.
2. How badly did you herx? I had a miserable first three weeks with fatigue, horrible headaches, increased twitching, pain along my temple and cheekbones.
3. Did you have a positive bloodtest for Bart? No, never.
4. What symptoms do you feel it hit? Brain fog/derpersonaliztion, muscle twitching, extremes of anxiety.
Posts: 520 | From Maryland | Registered: Jan 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
1. How long did it take to feel positive effects?
I was on it last year for only 4 weeks- at week 4, I felt amazing, and my old LLMD then pulled me off. This time, week and a half.
2. How badly did you herx?
Doable- I incorporate different things for detox daily- I could function.
3. Did you have a positive bloodtest for Bart?
Yes- high positive for Bartonella henselae- have had it at least 15 years untreated.
4. What symptoms do you feel it hit?
Anxiety! Feel calmer. Neuro- not as snappy. More energy (back to walking outside.) Not gone yet tho- I need more work on Bartonella. It's a huge player for me.
Hope to stay on rifampin for a good while, talking to LLMD in a few weeks about adding to it for more Bartonella coverage
as adding Levaquin to it was a no go.
-------------------- 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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Haven't filled the Rx yet but I will today. I just worry about all of this on my liver.
How about cognitive issues. I feel like anxiety is related to meds/herxing for me. I suppose with more energy I will think clearly.
Does it hit brain fog/memory/executive functioning and organization type issues?
Thanks again, I feel more hopeful about this because of your reponses.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Yes on the brain fog, alertness, etc. I was on it the last time for 16 months with no liver issues.
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Joysie Thanks so much. For some reason I am feeling a little bit hesitant about starting it. Dropped it at Pharmacy today.......Guess I will start tomorrow.
Cross your fingers for me.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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I couldn't do Mepron at all. I hope it works for you and that the herx is mild and short lived.
Take care of yourself
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I felt mildly better after about a week. I felt measurably better after 4, and significantly better at 8 weeks.
I did not herx too badly. I had some pain and twitching (calf muscles), but not as severely as others describe.
I never had a positive bart test.
Primary improvements: brain fog, exhaustion, muscle twitches, feeling like a sick person.
I will say that I have had more pain than I used to in my ribs and my wrists. As my other symptoms have gone, the last one left has been more noticeable, which is inflammation.
Posts: 447 | From Vermont | Registered: Jan 2011
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