My friend in OR is starting a combo of Rifampin and Minocycline for Bartonella.
She doesn't quite know what to expect. I promised I would find out what I could.
This is the best place I know. I will try to look it up in "search" here, but don't have a lot of time.
So, I will really appreciate anyone's experiences if you can post it here.
Ann - OH
Posted by Geneal (Member # 10375) on :
Dear Ann,
I had a real hard time with rifampin.
I herxed, but it caused other problems for me as well.
I had horrible muscle cramps especially at night while on rifampin.
Had to up my magnesium while on it.
It also gave me bladder spasms.
Also, if your friend is on diflucan for yeast, I found out
The hard way that rifampin lowers the effectiveness of diflucan.
Thrush, thrush and more thrush. Had to increase amount of diflucan taken while on rifampin.
Hugs,
Geneal
Posted by shoney (Member # 9925) on :
Rifampin was tough-made me very anxious, burned up at night, wired. But, felt much better when it was over
Posted by Lymetoo (Member # 743) on :
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.
Posted by polar blast (Member # 9142) on :
it is very brutal and combined with mino...I dont think you will be able to take it...dont overdo it.. eric
Posted by Dave6002 (Member # 9064) on :
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.
Posted by Andie333 (Member # 7370) on :
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
Posted by sunnymalibu (Member # 9586) on :
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!
Posted by Jill E. (Member # 9121) on :
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
Posted by Foggy (Member # 1584) on :
I tolerated the full dose well but never got use to the freaky orange pee. Posted by sunnymalibu (Member # 9586) on :
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.
Posted by Andie333 (Member # 7370) on :
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
Posted by Ellie K (Member # 12056) on :
Ooh, I just started Rifampin (600mg)/ Mino(300mg) combo 3 days ago and alreadly, it is brutal.
I was on Rifampin once before w/ Septra and it felt different then: mostly sea-sick, dizzy feelings.
Now, I feel horribly anxious and can't stop puking bright orange.
I am considering cutting my dosage a bit.
Good luck with this combo, we'll have to see how it goes together.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Ellie K: Ooh, I just started Rifampin (600mg)/ Mino(300mg) combo 3 days ago and alreadly, it is brutal.
That sounds WAY too difficult to begin with such a high dosage on both meds. My non-medical opinion!
Posted by sunnymalibu (Member # 9586) on :
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!!
Posted by Ellie K (Member # 12056) on :
Thanks everyone for your input. I'm starting to think 600mg is too high too. I really don't think I'm actually keeping down much of it anway.
I have never felt this awful before, even on Levaquin.
I hope this ends soon. Posted by sunnymalibu (Member # 9586) on :
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!
Posted by dmc (Member # 5102) on :
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.
Posted by lymebytes (Member # 11830) on :
Sister LOVED Rifampin and did well on it.
Husband hated it and quit.
Everyone is different.
Posted by IMHisda (Member # 6998) on :
Loved it. Had anxiety/etc. side effects but it took away three strains of Bartonella after 9 mos. I took it with IV Claforin (loved that too).
Posted by sunnymalibu (Member # 9586) on :
Does rifampin treat Lyme or only Bartonella?
Posted by Jill E. (Member # 9121) on :
quote:Originally posted by sunnymalibu: Does rifampin treat Lyme or only Bartonella?
It treats Bartonella and Ehrlichia.
Jill
Posted by Anneke (Member # 7939) on :
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
Posted by Anneke (Member # 7939) on :
ONe thing to add here...
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
Posted by Ellie K (Member # 12056) on :
For the record, I am officially quitting this stuff (and Mino). Taking myself off entirely.
I have never experienced such hell in all my life.
On top of the non-stop vomiting, dizziness, nausea, ear pain, I had a truly psychotic experience last night.
My brain felt like it was going to explode and I started hallucinating.
I have never felt so out of it in all my life.
There has to be a better way than this...
Can IV's avoid nausea/vomiting side effects??
Posted by DW213 (Member # 9590) on :
Don't feel too bad about it, Ellie.
I usually tough out any meds prescribed to me, but the Mino/Rifampin combo was the worst ever!
Lasted about 3 weeks before I gave it up.
Posted by Anneke (Member # 7939) on :
Dear Ellie,
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
Posted by sunnymalibu (Member # 9586) on :
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?
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My non-medical opinion!
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