Topic: Rifampin-Started-still nervous-Need a Pep Talk
GretaM
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posted
Hi All, First off, I have to say, God Bless Lyme Literate Naturopathic Doctors.
I am SO grateful for my doc. His knowledge and his willingness to treat lyme patients is truly a blessing.
But tomorrow I am to start Rifampin for Bart. (started August 17/13)
I am already on cryptolepsis and mino.
I am a bit frightened as I already get completely disabling migraines. I have about 4 disabling migraines per month, and about 20 days of bad head pain/pressure a month.
What I've been reading is basically this... Bart herxes are bad.
My doc took the time today to point out the little balls of tissue (he used the correct term-I can't remember it right now) on the bottom of my feet (looks like dried peas under my skin), and the swollen tissue in my feet and heels. And did a full neuro and eye function exam, and examined my rashes.
Hands down, it points to Bart.
I am pretty frightened that I will be derailed with disabling migraines for the next week. Or even worse, anxiety. I haven't had anxiety in years, but anxiety scares me too.
My instructions are to start low and go slow, and taper up to ideal dosage over the next two weeks.
I need some stories about how great Rifampin works and also how to keep the migraines low. Basically a "chin-up, head-high" pep talk so I can take my pills courageously.
Thank you.
[ 08-18-2013, 03:56 PM: Message edited by: GretaM ]
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posted
I'm supposed to start Rifampin next week too. I don't know how bad it will be but one thing I do know is that I don't want to keep feeling like I do now. That's incentive enough for me.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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Sammi
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Rifampin was a great med for me. I am not just saying it, it really was!
It does interfere with Armour Thyroid so be aware if you take it. I had to stop it for that reason. I wish it didn't interfere, but it did.
It is smart to start low and work your way up. Good luck!
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GretaM
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Sheila-Great point!
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GretaM
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Sammi-
Thanks for the pep talk! I'm glad it worked for you!
Were your Bart symptoms primarily neuro, or pain?
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Haley
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You might as well just end it all now. Just kidding If you start slow you should be fine.
The first time I tried this I was just starting this stuff and I popped 600 mgs off the bat, didn't think anything of it.....Don't do that. I had a major herx, but I also believe that certain symptoms were knocked out in 2 weeks.
The next time I tried it i worked up slowly and it was a very different experience. I think the reason it hit me like a mac truck was that I also have RMSF, Ehrlichia and Bart so I was hitting a bunch of stuff at once.
Buhner's latest book says that killing Bart alone should not cause much of a herx. The other stuff can though.
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BoxerMom
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Rifampin was one of my best and easiest meds. I took it for 18 months. Bart herxing, for me, was nothing compared to Babs.
Definitely anxiety at the beginning though. Had to take a Benzo during the day to keep from flipping out. Physical symptoms were frontal headaches, sore throat, sore jaw, sore soles. And, of course, nodules and rashes.
GretaM
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Haha! Haley! Had a laugh at your first sentence there. haha!
OK, thanks for the tip about taking it slow! I had RMSF also, but it seemed to clear up with the doxy? (I hope...)
Was Rifampin your first abx?
I will take it slow, for sure! Especially if there's a chance I have some RMSF lingering around.
And you noticed positive changes in 2 weeks... that's great! I am hopeful that getting Bart will reduce my head pain.
Thanks again
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GretaM
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Hi BoxerMom!
I'm so glad to hear that Rifampin was a good med for you! That helps to take away some of my fears about it.
I am a bit nervous about flipping out in the early days as well...Coworkers are on holidays next week...so tomorrow may be the best time to start. haha!
Note to self: Don't wear white pants
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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GretaM
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eek! OK, thanks Lymetoo!
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Haley
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Boxer Mom - I recently tried Factive and I had the hugest frontal headache EVER! I had it for 5 days. I also have the sore teeth/jaws and the anxiety!
I just be hitting Bart. I don't know if I will continue with this med. My doc says try again and do 1/4 of a pill a day to start so that is what I am doing.
I think Babs meds are the best for my brain stuff (cognitive), but I must still have some Bart.
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BoxerMom
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Yeah, that's how I feel. Babs' meds are best for my neuro symptoms, but I still have some Bart.
It's been a while since I targeted Bart. Probably due for a round.
GretaM
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posted
Boxermom.... LOVE your brain anime! Awesome!
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surprise
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My experience with Rifampin: you mention you liked your Tindamax days, like you were 'up' more- I did feel that with Tindamax, too, and also rifampin.
The 4th week I was on it, a memory I'll never forget- I remember sitting with my family feeling utterly content- deep peace inside, like I hadn't known in years.
Sounds weird, but I knew it was the rifampin combo clearing my Bartonella, which to me was my 'big' presentation, for many years.
Unfortunately, my LLMD (I switched LLMD's a few months after this) pulled me off the rifampin- this LLMD was very into the mold/macrons protocol, which involved pulsing rifampin
which in my opinion, rifampin should not be pulsed. It never worked like that again for me- I also did 2 longer rounds of Levaquin
before and after that- and many herbs, other antibiotics for Bart (Cipro) but that's my experience with rifampin.
-------------------- 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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GretaM
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surprise-
"The 4th week I was on it, a memory I'll never forget- I remember sitting with my family feeling utterly content- deep peace inside, like I hadn't known in years."
That is the best inspiration for me.
I hope I feel the same on Rifampin as you did.
Thank you for sharing your experience with pulsing. If my LLND ever suggests it, I'll tell him no.
I feel like Bart may be the big guy for me also. The nodules in my feet have been there for a long time. I just thought that was how my feet were...
It would be great if I could somehow be at that place of contentment soon.
Thanks for sharing that great experience Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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BoxerMom
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Greta - Thanks! Photobucket took away my Vampire, so I went Zombie!
I relate to the animated dead. (No pun intended, although that phrase worked unexpectedly well!)
surprise - I know that place!! It has happened many times for me. It doesn't seem related to a particular med, just a healthy balanced brain when infections are under control and inflamm is down.
If I could just get that feeling to stick around...
Andie333
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posted
I'd taken Rifampin early on in my treatment. Like others have said, I didn't start slowly, and it was pretty rough going...especially because I had some nasty neuro symptoms.
Flash forward quite a few years: I started taking it again about 7 months ago, because my LLMD feared a flare of Bart.
This time, I started slowly, and I currently take 300 mg. Most days, I don't even realize I'm taking it, but I have to also say that when I herx, the symptoms are pretty tough for a few days. Not horrible but pretty tough.
The other night, I saw an old friend, and she said she hasn't seen me look this good or sound this good in years.
I feel like Rifampin is one of the most helpful drugs I've taken over the years.
Much success to you, too!
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Sammi
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quote:Originally posted by GretaM: Sammi-
Thanks for the pep talk! I'm glad it worked for you!
Were your Bart symptoms primarily neuro, or pain?
I never tested positive for Bart, but we all know that means nothing. I just remember it helped me feel better overall.
Let us know how you do with it.
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lpkayak
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ok-i didnt read all of above but i want to say rifampin was one of the hardest for me to start but i got huge results results from it
also i am on armour and it did not bother that for me
it made me suicidal at first...but in a wierd ay...i took the pill...i knew i wanted to kill myself...8 hrs later when it wore off i remembered wanting to kill myslef and thought how wierd that was
i was lucky to have a friend close so i crumbled the pills and began taking it a tiny bit at a time. i had the friend keep a close watch and it was ruff at first but within 2 weeks i waas on full dose-no problems and i just kept feeling better and better. it wwas only drug that took sever ball of the foot pain away---plus other things
goos luck you guys
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I am starting Rifampin today as well. Let me know how it goes because I'm scared too! Does anyone know if you can split the 300 pill into 150 and start slow?
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GretaM
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Andie-Thanks for sharing that. Yes, I don't want to herx too badly, that's for sure. The headaches are wearing me thin.
I look forward to the day when people tell me I look good, instead of tired... haha
Thanks again Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Lpkayak-Thanks for the heads up. I will make sure to have a big note reminding myself it's a side effect from Rifampin killing Bart, not Bart killing me, so I don't do anything too drastic.
Lyme and co have been really great at weeding 'non-committed' friends from my life. I don't have anyone left to ask to keep an eye on me. All the committed friends and family live out of town.
I will ask someone from my support group to be my phone-buddy in case I get very depressed.
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GretaM
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rkbb2004-
First pill down.
Mine are 150mg capsules.
Are you able to trade your 300mg capsules for the 150 mg ones?
I don't know much about splitting capsules....maybe the pharmacist will be able to give you some tips on how to do it, or better yet, give you the 150 mg ones instead.
Best of luck to you, please keep checking in so we can support each other.
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GretaM
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posted
Can't sleep.
Totally wired- head and neck have that "hangover" feeling.
Not sure if this is a herx or just insomnia related to the upcoming full moon.
Argh!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
It could be your nerves from being anxious from starting a new med. I can never sleep the first few nights then I crash hard!
Posts: 33 | From Southern Indiana | Registered: Feb 2013
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+1000 on lyme NDs - just started seeing one about a month ago and the attitude/change towards Lyme has been refreshing and exciting - hoping we can take some more aggressive approaches going forward.
Am a month into Rifampin and Minocycline and seem to be tolerating it okay - had a good herx this past week but seem to be pulling out of it now which I am happy about. One of my main herx symptoms has always been insomnia and inability to stay asleep.
Posts: 118 | From New England | Registered: Apr 2013
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Jane2904
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Good Luck Greta,
Our DD took Rifampin few years back and after about 8 weeks with Mino too, she started to feel better.
I have to say it was the only Antibiotic that made the most improvements for her.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
I have been on Rifampin since July 6th. August 1st I started Minocycline. I am going after Bartonella.
I have been herxing like crazy on and off.
-head pressure has worsened BUT i THINK it is finally getting better after almost two years of non stop pressure in my head. -ear pressure/sinus pressure/popping is the same thing.. may be getting better? -FULL body buzzing/vibrations -horrible fatigue and anxiety -nauseated/overall uneasy/flu like feeling -very blah feeling -heart pain is getting BETTER and is 75% gone -migraines here and there... i feel stop popping, buzzing, quick sharp pains in my brain soon after taking rifampin -tinnitus is gone -eye floaters and halos still persist -a few memory problems - a whole bunch of other minor ones I cant remember right now.
This is the most I have herxed/worse I have felt since starting treatment last October. I now know I am definitely killing stuff and I may have found relief that the Bartonella is causing my intense head pressure.
Be prepared to pee orange. I wear contacts and there has been zero discoloration.
I am also on a whole bunch of herbals and supplements which I herx from as well from allergy research group Biopure and pure encapsulations brands which I use.
Andrographis liquid extract definitely kills stuff.
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GretaM
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Rkbb-yes, maybe! I am nervous about the rifampin herx. Haha! I hope so-I need some sleep Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Lymeswimmer-Hi! Yes, I completely agree! Naturopathic doctors just seem to approach health care differently. And they spend the time to ask questions.
Had brutal insomnia last night-I was wired like if I had drank strong coffee late in the day. Then when I fell asleep, I woke up maybe 30 times.
Also cried quite a bit last night. Not sad tears but just emotional release tears at completely innappropriate times. Super strange for me.
I'm glad you're getting out of the herx! If you don't mind me asking, are you at 600 mg daily of Rifampin? That is the dose I will be at in 2 weeks, if all goes well.
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GretaM
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Hi Jane!
That is good to read about your DD experience with Rifampin.
Thank you for sharing. If things get rough I'll tell myself to give it 8 weeks (even though we're all different, but something to focus on), before reevaluating.
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GretaM
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Xrunnerx2012-thanks for sharing about your Bart treating experience.
I am especially wary about the increased head pressure and pain. Mine is pretty much at a steady 7 everyday just normally, on a non flare day.
Got to pull my socks up and get rid of this fear. Got to get rid of this Bart. Can't get rid of it if I don't treat it.
Still scared though.
I have loved bugs my whole life...just reading how many bugs carry Bart. Pretty scary.
Are you at 600 mg daily of Rifampin? Did your doc have you taper up-or just jump in?
Thanks again Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lax mom
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Sending you positive thoughts. You will be fine Greta.
I was on Rifampin at the beginning of treatment for about 4 months. I seem to remember that I actually felt better taking it 2x/day as opposed to 1x/day. I don't know why that was the case.
posted
I am on 600mg of Rifampin once a day and 100mg of Mino twice a day. In two weeks I will be on 600mg of rifampin twice a day and the mino may be increased as well. After than down the road I will start A-Bart. I refuse to ever take Levaquin,
The herx will be rough but remember a lot of people felt absolutely horrible for weeks but then after a lot of their symptoms disappeared, including head pressure for a lot of people! My doctor said to expect to feel horrible for the next three months.
I am hoping this is the right course. Babesia treatment didn't do anything for me. I am feeling changes all over my body with Bartonella treatment. Please let me know how your treatment goes and if the head pressure gets better.
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Jane2904
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Greta, forgot to mention, she started at one capsule and about eight weeks later added second capsule.
Might be why, it took awhile to work.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Hi Greta - quite a bit actually, so you are not alone there.
My migraines or sinus headaches always get the ice-pick in the head when standing up.
For migraines I am guessing it has to do mostly with the change in blood pressure that comes with standing up - with sinus headaches I am guessing because sinus fluid is moving through inflamed sinus cavities to a new location when standing up.
Glad to hear you are feeling better this morning
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GretaM
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Lymeswimmer-thanks, that makes sense I've been feeling OK today head-wise. Other inflammation is bad, but head feels OK.
Major word issues, but that's par for the course.
Thanks again Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
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Hey Greta- to me, what you are going through sounds exactly like Bart die off/ herx to me.
Oops, guess in the pep talk to you I forgot to mention this part- or, I've blocked it out.
Hang in there---- again, just to me, sounds like the rifampin combo is hitting your very real Bart infection- which is a good thing, even tho it doesn't feel like it.
-------------------- 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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GretaM
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Hi surprise,
OK thanks, that is good to read. My head is killing me today and feet and joints are all swollen up.
As long as I'm killing this darn bartonella, I'll suck it up and wear my head pain proudly.
(keep feeling the back of my head for an ice pick though, haha)
Thanks for reminding me this means bartonella are dying...
That's good! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I may start rifampin very soon and am watching your experience closely!
hope you a little better every day.
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GretaM
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Argh! Head and neck pain pretty rough today. Is a wolverine trying to claw it's way out of my head?
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Jane2904
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Hi Greta,
So sorry you are having increased pain today. I hope it passes quickly for you.
I do remember that our daughter's headaches worsened for a short while when she first began the Rifampin.
Then, I believe that once she got to full dose, her constant daily headaches went away.
Maybe heat or ice might help?
Sounds like you are killing the Nasty Bart!!
Hope you feel better soon.
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GretaM
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Thanks Jane
5 more days until I go to 600 mg/day...
Yes, killing Bart! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Head pain awful.
Ran out of migraine meds.
Went to the pharmacy-begged for a prescription advance. They could only give me two-enough to get me through the night.
Explained I couldn't go to a walk in clinic till Saturday. Couldn't afford to miss time off.
They said they couldn't give me 6.
Another person came up to get his methadone. Basically his prescription for methadone had run out a while ago. They had already reminded him to see his doc. He said, yes yes, and THEY gave him his methadone!
I got so angry I burst into tears at the pharmacy counter.
Just about told the pharmacist that it would be easier to get methadone than axert. Seriously just about blew my top.
Realized I was having a Bart rage and left the store.
But really!?
So herxing pretty badly, I'd say.
Cried tears of anger the whole way home.
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surprise
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I'm so sorry! Darn it, should have asked for the methadone. Probably feel like you want it.
This sounds ridiculous, but sometimes holding ice packs in your hands help.
Wish I could help- I'd drive you to work and prop you up-
Good thoughts-----
-------------------- 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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LisaK
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Hang in there Greta.
I don't have much to say about treatment since I just started (with basic doxy)
I have been getting migraines for 15 yrs since I got these buggers. I don't like taking "real" meds so I use homeopathics.
Have you tried any? I found that B&T Migraide takes off the edge and helps me feel clearer in my "headache thinking" enabling me to get some things done
I pay $11 for a box of 40 which might not last you long, but at least you can get it (hopefully) easily.
I have noticed that my headaches have gotten more worse in the last several months. When I have them they will even wake me up and I feel worse actuallly lying down than I do standing up sometimes.
but moving to get to any position does hurt a lot!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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