lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I had a hard time on Doxy, not many report this.
I had an easy time on Biaxin, no taste in mouth, easiest drug yet.
Have read in search Rifampin sounds totally intolerable...maybe because I've been opposite of many on other drugs, I'd luck out and would do ok on Rif. On the other hand, my sister with Lyme LOVED Rifampin from day one.
Not sure what to expect...
Love to hear your good and bad stories and if bad, what happened exactly? Did you make it to full dose?
I started taking Rifampin, after not taking any antibiotics for about a year, about two and a half months ago.
After trying to take about a half of a dozen of different antibitoics, without seeing very much improvement in my symptoms and experiencing too many bad side effects, I thought I'd never find an antibiotic, which would help me and I could tolerate.
After reading all of the posts here about others who had tried taking it too and what they had experienced from doing so, I was reluctant to try taking it too.
I must say though, without a doubt, it is the BEST antibiotic I've tried taking yet!
When I recently went to see my doctor, it was the first time I'd ever asked him if I could please continue taking it, which was uplifting to my spirits!
I'm very encouraged with the results I've experienced from taking it, as I've improved about 15-20%, where my staminia has increased and cognition has improved!
I have to be honest and tell you though I had a lot of pain, as well as some fatigue, from taking it, but with me taking some extra pain medications, as needed, and just resting when I needed to, instead of pushing myself, I was able to tolerate taking it.
I finally made it to my full dosage of 600mg/day about two months ago. It's been two weeks since then and my pain and fatigue have gotten a lot better!
I started taking 150mg/day in mid-November and about every two weeks I increased it another 150mg/day, until I was finally taking my full dosage by mid-January. It took me two months to do that, but I don't think I could have tolerated it as well as I did, if I hadn't done it that way. I'm just not someone who can take a full dosage of any antibiotic from the very beginning though, as I tend to herx a lot on any of them I try taking.
There are a couple of things you should know about taking it though.
One, it will turn your tears, sweat, urine, and feces orange, especially your urine and feces a bright orange. I've never had any problems with my tears or sweat doing that, but I did with the other two and it was definitely very noticable, although it's not harmful, at all. It's quite fitting the pills are a bright orange too! LOL!
Two, it's a P450 enzyme system inducer, which means it speeds up the way your liver metabolizes certain medications, such as pain, anxiety, etc. Because of that only, not tolerance, I did have to increase the dosages of my pain and anxiety medications for a little while. Now that I've stabalized with taking it though, I've been able to decrease my dosages of them to my original ones and am experiencing the same relief from taking them, which I did in the very beginning.
Also, pain, instead of fatigue became my biggest problem for about two months. It felt more like bone, than muscle, pain to me though. Knowing Bartonella, which it mainly treats, does get into your bones, it made sense to me, why it felt that way to me too. I could be wrong, but I think that's why I had so much pain.
About a week ago, I started taking Tetracycline, along with it. As always, with every antibiotic I try taking, I'm herxing on it too, but managing to stick it out, just by keeping myself as comfortable as I can. I'm having some pretty bad migraine headaches, but thankfully, I have some stronger pain medication I can take, when needed, which is helping me some with them, although it's a tradeoff, as when I do take it, I'm so groggy I can hardly concentrate. I just keep telling myself, just like when I started taking the Rifampin, if I can stay the course and stick it out, then it will get better!
It's really made me think about just how much my coinfections are probably making me a lot sicker than my lyme, which I've underestimated for a long time!
I hope what I've shared with you about my experience with taking it helps you! If you need to know anything else about it, please let me know and I'll try to answer your questions or concerns the best I can!
I really hope you are able to tolerate taking it without experiencing too many problems and it helps you as much as it's helped me!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
I took Rifampin for 2 months, 600 mg on an empty stomach. It did ALOT for me, I actually miss it. It did make me somewhat anxious, but nothing I could not live with. It helped me alot!
Posts: 520 | From Maryland | Registered: Jan 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Rifampin has been a good drug for me as well.
It's what has made me get to about 70%.
I have had no problems with it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Iam on rifampin and didnt notice anything also on minocin .
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I have found Rifampin the best antibiotic so far for me, its pretty powerful if you have Bartonella.
Posts: 74 | From United Kingdom | Registered: Dec 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I, too, am tolerating Rifampin well. I definitely herxed (with zithro combined) but mostly emotional herxing with Bart.
At one point I was up to 1200mg (do NOT recommend this as I was an emotional wreck).
Standard dose: 600mg (this is what I'm at now, every other day). I really believe this, combined with the zithro and then cholestyramine at end of day to mop up toxins is helping a lot!
I'm only 3 months into it and Dr. B's protocol for Bart is 6-9 mos of treatment but a few people said they "turned the corner" in the 4th month.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hey, You and I have talked about this, but I'll do my thumbs' up for Rifampin as well.....I'm 7 months in and started out of the gate with 600mg/day on an empty stomach. Brought out a huge horrible herx (emotional, bone pain, tremors) at 6 weeks but LLMD was pleased, said we're hitting our target. I'm not done, I know bart is not gone, so I'll be on it long term. Recently LLMD added Buhner herb against bart, so I'm ramping up on that too. Bart is a hard bug to kill, but I'm trying not to touch the quinolones if I don't have to!
Posts: 3528 | From US | Registered: Apr 2007
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posted
I've been on Rifampin 600mg/d for about 8 months and it's helped me a lot. It only made me feel better...I've had no ill effects from it that I can recall.
Posts: 975 | From California | Registered: Apr 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I love it. First week I had emotional herx...bawled for two days. Cried over the silliest things, like Meerkat Manor commercials.
By far the most effective drug for my bladder spasms.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Wow - NOT ONE BAD POST!!!!!!!!!!!
Thank you for sharing all your stories, this gives me confidence to try it. My LLMD is after Ehrlichia (and who knows, he says I "cured" of Bart) but if I do have any Bart left it will help too.
My husband had what I think was a "side effect" reaction - it actually matched the side effects on the pharmacy slip and he is afraid of it. But like I said my sister loved it.
It is a choice and as you said CD57, I too am trying to stay away from the quinolones.
Thanks everyone - say a prayer for me (if you do pray that is) I can handle it please - this is so important, I have had horrible experiences with most drugs - THIS MUST WORK OUT FOR ME!!
quote:Originally posted by lymebytes: Wow - NOT ONE BAD POST!!!!!!!!!!!
OK, OK...You forced my hand!!
I took it for 5 days. I had a massive headache every single day. I finally stopped it when my headache became completely unbearable.
It took 3 weeks for my headache to go away even when I had only taken 5 pills!
My LLMD had to prescribe another abx to reduce the swelling in my brain, which he said the Rifampin caused.
I won't take it again.
PS...I don't think I had bart.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thanks Lymetoo - I wanted all opinions! I remember you telling that story actually.
Did you ever try Mino or Doxy? You must have! They are the worst for causing brain swelling, my friends daughter nearly went blind on Mino after horrible headaches started, she thought was herx until she woke up blind! Quick acting doctors figured out her cerebral spinal fluid was building and she was hospitalized they feared her sight would never return, they had to keep removing spinal fluid for days. Thankfully it did save her sight. The tetra's are known to do this in women between 20 -45 especially. Men aren't effected as much.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
What happens if you take it with food? I am supposed to start it but not sure my stomach can handle it on empty.
I also read somewhere that you should avoid Tylenol with it, but can't find where I read it. Does anyone know if this is true? It's the only painkiller I can take and can't imagine months without being able to take any.
Has anyone gotten sick from having to stop it suddenly? I understand it's a med you can't just stop. (if not tolerating it).
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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dontlikeliver
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posted
What happens if you take it with food? I am supposed to start it but not sure my stomach can handle it on empty.
I also read somewhere that you should avoid Tylenol with it, but can't find where I read it. Does anyone know if this is true? It's the only painkiller I can take and can't imagine months without being able to take any.
Has anyone gotten sick from having to stop it suddenly? I understand it's a med you can't just stop. (if not tolerating it).
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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adamm
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posted
I know it's supposed to be good, but it didn't touch my bart.
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dontlikeliver
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posted
I brought this back up to the top to see if anyone can answer my questions on Rifampin. Thanks.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Vjb--how is the Levaquin, do you think it kicked off the rest of the bart?
Liver...never heard anything about not stopping suddently or the Tylenol thing...but Rifampin does interact with/mess up a lot of stuff so it wouldn't surprise me.
Posts: 3528 | From US | Registered: Apr 2007
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jamescase20
Unregistered
posted
I took cipro for 1.4 months and leva for .1 months...hope its over....will go on rifm.soon for a month
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lymebytes
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posted
Wow, I didn't know it either, but dontlikeliver is correct Tylenol is listed as a drug that could interact, here is the ENTIRELY LONG list: http://www.drugs.com/cons/rifampin.html
I wanted to share my Rifampin expierence....POSTIVE ONE!
I'm about two months in now... I was very scared after reading lots of HORRIBLE stories about it...
I started at the 600mg on an empty stomanch at 5am...
I did have an increase of anxiety-which I just delt with...and it tapered off in intensity after two weeks...
Also, I had pretty intense headaches...(about 2 weeks in) about 3 which knocked me on the couch
begging anyone to take the pain away...those passed quickly, thank god... ( i never took pain meds for them-)
I also had increase in bone pain...
and swollen lymph- groin pain-- very strange- my labia swelled and hurt really bad- the gyno was
stumped! did all kinds of testing and found nothing, in gyno world...who knows, but I think it's related to bart...
but noticeably I had a DRAMATIC INCREASE in my STAMINA!! I could walk my DOG! I put my tennie
shoes on for the first time in TWO YEARS! it was a great moment... smiles! I shouted with JOY!
I didn't need a rest period after every minor thing I did...it's really been great! I started
going out of the house more(to do errands and such mainly) but had the strenght to drive myself..!! huge improvement!!
I really am enjoying this one...
Also, my BRAIN FOG took a hike! It was great! I was suddenly remembering things- things that
others weren't too! I could remember what pills I just took, and would not forget what I was
saying! oh how wonderful! my depression lifted also! smile!I felt really clear- it was so nice... I still
do..but I'm herxing a bit right now...but its lifting again...smile!
my sweat or tears have not turned orange...
only my first and maybe second urine in the AM is bright orange (I 600mgRifampin at 5 am)....
It's really aparent to me that BArt is a big problem for me...
I'm also taking Tindamax, Omnicef, and Zithromax...plus Buhners herbs..
I've wanted to stay away from the quin's too...
Going to start penicillin injections on Friday...wish me luck...
If you have any questions or need any support - feel free to Pm me...
Love & Clarity~
Fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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dontlikeliver
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posted
Thanks for starting this thread Lymebytes, I'm encouraged by all the positive posts it's got.
One more question to anyone, is anyone taking it with Cortef? That is another interaction mentioned but obviously my LLMD doesn't think it's an issue.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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CD57
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posted
yay Fawne! So impressed on your progress. Yes, I think bart is a huuuuge problem. I think it's been the most ignored of all the co's.....my LLMD only recently said that he has "new respect" for it. Gotta treat it, agressively!
I'm on month 7.5 of Rifampin + combo, and am now adding Buhner herbs to combat. Had a little herx the past few days so I know bart is not gone. Takes a looooong time.
Posts: 3528 | From US | Registered: Apr 2007
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posted
thanks for cheering me on CD57-- I re-read my post just enjoying the improvement- it feels so good to be feeling improvemnet after so long...
you have been taking it for 7.5 months- oh boy!
yea my doc gave me the choice of Levaquin or Rifampin, saying it'd be MUCH longer on Rifampin....
I chose the 'safer' route im my mind....Rifampin
But I watched that video of Dr. B.'s and he's an aggressive bart treater with Levaquin- with lots of patient success ....
but still can't , at least now, bring myself to take it...
what bhuner herbs are you taking?
I'm supposed to start Stephania Root for months now- but havn't found the time to...always adding something else..and want to do one at a time...soon..
LOTS OF POSITIVE HEALING ENERGY!
night~ Fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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