posted
Rifampin was tough-made me very anxious, burned up at night, wired. But, felt much better when it was over
Posts: 561 | From eastcoast | Registered: Aug 2006
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posted
After 5 days on it thought I would die of a headache. Stopped the Rifampin, but the headache continued 24/7 at a level 11 on a scale of 1-10 for the next 3 weeks.
Won't find me taking that stuff again!
Tell her to start out slow on it. Mino can be very rough too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
it is very brutal and combined with mino...I dont think you will be able to take it...dont overdo it.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I have been pulsing 600mg of Rifampin and 200mg of Mino on TTS for over 3 months, and I didn't have yeast problem without taking Diflucan.
The combo worked within a week and definitely gave me some herxes but not much.
You can feel its effects (good and bad) within hours after taking it.
I improved on the combo but haven't got rid of Bart yet, and wondering if I have been plateaued or I need more time.
I haven't observed any noticeable side effects.
However, I have been taking home-made Yogurt, garlic juice and liquid form of the abx.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Ann!
I started taking rifampin about 7 months into treatment. Bec of some of the stories I'd read here, I started slowly and ramped up dosage over several weeks.
Even then, I had an indescribably brutal headache and initially, things like seizures and numbness worsened.
But after a few months, I took a big step forward in treatment and really began to see improvement.
I've tried cutting back, but I don't think I've beaten this yet. No problems with yeast, thank God...in fact, I feel most vulnerable to yeast when I throw a week of tindimax into the abx mix. Then I have to up probiotics, acupuncture and Chinese herbs.
I hope this helps and wish your friend success. It's been a good antibiotic for me.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
My doctor just wrote me a prescription for Rifampin which I have not picked up yet.
I tried the TB drug Seromycin but it made me very tired and depressed. Then I tried Ketek but got a bad rash so had to stop that.
I was going to start the Rifampin this weekend but just found out that I have to have eye surgery to add a second glaucoma valve to my good eye. I think I read that it's not good to start and stop this drug so I'm not sure if I should start it now or wait until after surgery.
Anyone one know anything about stopping and starting Rifampin.
Best wisehs to your friend and keep us posted on their progress!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Sunny, If you stop and restart Rifampin, you may not be able to tolerate as high a dose when you restart. Better to wait if you can.
Ann, Like others said, ramp up slowly if one is sensitive. I had to start with a pediatric dose and ramp up, and still the herxes and side effects were brutal.
I have had increases in: seizures, myoclonus, electric shocks; new sensations of dizziness, rocking boat sensation, bee stings; new symptom of noise sensitivity. Oh yes, and lots of Bartonella rashes.
Still on the darned stuff but never made it past half a dose.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I tolerated the full dose well but never got use to the freaky orange pee. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Jill E.- thanks for your reply and detailing your symptoms. I know what you mean about the bee stings. I've told so many doctors about this sysmpotm and they all look at me like I'm an alien!
These side effects sound brutal! Are people able to function while taking this drug?
While I took the Seromycin I pretty much slept and laid around for the week. I know that we all have a lot of things gong on and if you don't have a significant other most can't afford to lay around and herx.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Sunny,
I functioned even at the beginning, and now I'm back at work, and I'm still taking it twice a day. At this point, there's no problem.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Andie-thank you for posting your success with Rifampin. It's great to hear that you're back to work! How long have you been on it?
Ellie-I just started today but broke the capsule open and just took the small cap full to start with to see how I react.
I agree with Lymetutu your dosage seems too high. My doc told me to take one a day for one week and then start two a day. Maybe if you go a bit slower you won't feel so sick and your body will adjust to it. Did you take it on an empty stomach and wait one hour before eating?
Keep us posted on how you're doing. Best wishes!!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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posted
Ellie-I hope that you lower your dose and hopefully you can keep it down.
I just took the rest of the capsule and that will be it for today.
I hope you can make it work for you!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I was told to take the 2 300mg caps. ONCE a day in morning. Not to split dosage. (from both my llmd and pharmacist)
I've only been on it two weeks. First week spent two days crying....even commercials made me cry. MeirCat Manor promo on Animal planet, I'd bawl.
I am not a cryer at all. My llmd said to stick it out if I could and it only lasted couple days.
It has helped tremendously will bladder issues. This is the first time in 20 years I can go a whole night with out getting up to eliminate.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Does rifampin treat Lyme or only Bartonella?
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
quote:Originally posted by sunnymalibu: Does rifampin treat Lyme or only Bartonella?
It treats Bartonella and Ehrlichia.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I have had amazing results with Rifampin!!!! I am doing better now than I ever have since starting treatment a long time ago. It has improved my mood, my brain, my energy - just about every symptom I have.
The first month was brutal. I had to start very, very slowly. I had lots of surges of heat, sweating, Bartonella rash on my leg, sore and burning heels, depression.
Then, I got a surge of well-being and life force!
I have continued to herx every 4 weeks for about 5 days. It always catches me off guard.
I am taking it along with Amoxicillin and Diflucan. I had to switch from Doxy because it caused that Pseudotumor cerebri symptom - a huge increase in spinal fluid pressure that leads to horrendous headaches. Doxy and Mino both can set off this condition. It's important to be aware of!
all told, it has been a miracle drug for me.
Good luck, Anneke
Posts: 364 | From California | Registered: Sep 2005
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At my worst, I have gotten tremors in my right hand and neck - long before I ever tried Rifampin.
Rifampin really jacked up the tremors all over my upper body. It scared the crap out of me. So, I did some investigating, and one of the SIDE EFFECTS of the drug is TREMORS.
It's important to read the side effects of the med, and not assume that every symptom we are going thru is herx related. It has helped alleviate some fear on my part.
Anneke
Posts: 364 | From California | Registered: Sep 2005
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There was a paper in the Clinical Infectious Diseases journal in 2003 titled: Lyme Disease Complicated by Pseudotumor Cerebri
"Two weeks after completing his therapy on Doxy., he continued to have daily headaches that were only partially eleviated by ibuprofen....
The patient had to have 3 lumbar punctures to releive the incredible buildup of spinal fluid, which finally ellevaited the headache pain.
"The association between Lyme disease and pseudotumor cerebri was first descrbied in 1985 in 2 children... ONe of the children was on penicillin"
Although pseudo. cer. can be caused by tetracycline or minocycline... this case was connected with the Doxy he took... Our patients headache persisted for 2 weeks after doxy therapy was continued. The lumbar punctures were used as the sole therapy for this patient."
Hope this helps~!
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
Anneke-great to hear of your success with rifampin, even though you had to go through a terrible time to come out feeling so well!
I was on Doxy and azith but felt that I needed something more. My doc took me off the doxy and azith and put me on Ketek. By the third day i had a terrible itchy rash on my arm and had to stop as it was continuing to get worse.
I started rifampin three days ago. So far no problems but I feel that I need something added. Can doxy be taken with rifampin? I didn't know that mino is used for Lyme.
Ellie I'm sorry that you had so much trouble with rifampin. What's next for you?
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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