Clarissa
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posted
Please help!! My head is spinning with the inconsistent useages of this drug by the various people on this board.
Inquiry One: My LLMD has had me on alternating days of zith & rifampin for four months. So I guess he thinks pulsing is fine AND said that you should not take zith & rifampin on the SAME day.
His explanation was technical and I didn't understand...but I decided to trust him as he's and ILADS LLMD. (sigh)
Inquiry Two: Now he wants to take Zith OUT of the equation, have me on daily Rifampin. I told him my concern because everywhere I've read, Rifampin MUST be taken with another abx so as not to become resistant.
Inquiry Three: He said that the Cumanda I'm taking COUNTS as another abx but I don't buy that.
Final Inquiry: "Everyone" keeps saying that if you stop using Rifampin even for just a week (or in a recent post 12 hours from Sweden...YIKES!), you'll grow resistant.
What is the truth with this drug and why is Rifampin of particular vulnerablity to resistance? What is the REAL cut-off resistance time that when you go back on it, you get "flu- like" symptoms?
I'm BEGGING any Rifampin users (combos/pulsing/plain, etc) to tell me their protocol for Rifampin.
I'm starting to feel like the discrepancies for the Bart treatment, regarding Rifampin, is worse than the disease itself.
Clarissa
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posted
Sorry about the two similar posts but Stacyb and I are both being treated for Bart and are concerned with the same issues/discrepancies/inconsistent information.
Please just post your answers on this thread so you don't have to double your answers.
Sorry, in advanced...but we're just trying to figure out the truth to the Rifampin "myths".
Clarissa
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posted
JillE posted in another thread:
Rifampin is one of those drugs that can cause a physiological reaction that if you stop it and restart, or use it intermittently, the body can have a serious reaction - ranging from flu-like symptoms to far worse. This has nothing to do with Bartonella. This is something specific to Rifampin that is talked about in the Physician's Desk Reference.
So in addition to allowing Bart to become resistant, stopping Rifampin for a prolonged period could cause your body to make you sick when you resume it, or you may have to resume at a lower dose.
However, I had to stop Rifampin briefly after being on it more than one year (I only made it to half a dose, so I never was on the 600 mg). My LLMD said I can only go off it six days maximum, then must restart. I followed those directions and was able to resume it with no problems. My LLMD was surprised that I could resume it so easily.
Clarissa
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posted
Disturbedme Posted:
Well, when I was on Rifampin, I took it with Doxy on weekdays.
And Biaxin and Doxy on weekends. Which not sure if that's what you'd call pulsing, but that's what my LLMD had me on for 3-ish months to treat Bart (and lyme, I think).
Clarissa
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posted
Swesish Lyme Sufferer posted:
Zithro stays in the body for a long time so thatone is fine pulsing, but about rifampin I am not so sure, as it is almost out of the body after 12h. My doc tells me to take it every 12h. And never alone, always in combo, now with zith 6 days in a row and one day pause. That makes VERY high bloodlevels of zithro but I can manage.
But I really wonder about pulsing rif. I would like to if it is possible. My doc thinks no. But I cannot imagine your doc beeing wrong. Maybe he knows something mine does not?
Clarissa
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posted
CD57 posted:
My LLMD said that bart can become resistant to Rifampin in three days.....that's why it's always combined with something else. She said that it doesn't matter WHAT you combine Rifampin with, as long as there's something....zith/doxy/mino, whatever.
Clarissa
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posted
Anneke posted:
One more thing.. It interacts with Diflucan big time. You can NOT take it at the same time. And, the half-life of Rifampin is long, so you can't just take a Diflucan the day after taking Rifampin.
Clarissa
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Don't Like Liver Posted:
Do you mean if you have to take a day or three off the Rifampin you have a higher/high risk of getting low platelets? Is there a reference to this anywhere I can read?
Unfortunately, "all" the LLMDs have different opinions. I am rx'd Ceftin and Rifampin; my LLMD is an ILADS doc who's treated Lyme for over 20 years and has not mentioned that Rifampin has to be taken with a Tetracycline or Macrolide. Obviously, he doesn't think that is a problem. Do you have any references to the Tetracycline/Rifampin statement? I'd like to know based on what your LLMD says this, if possible.
Clarissa
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posted
Roro Posted (and this is a pro pulsing example):
am on the same thing. I take the rifampin M-F, zithro on the weekend and doxy & nystatin all the time.
i didn't notice herx the first week on the 300, but after the 600 I did. I usually start feeling bad the next day - swollen glands, muscle aches, flu-like feeling.
it also decreases the effect of my morphine so I have more pain and have to take more vicodin.
the first few weeks the herx was bad, lasted from tues to sat. now it only lasts a couple days and is not as severe.
my dr says when I stop having the herx, its time to come off and start treting the babs.
posted
I am concerned now because I am taking Rifampin by itself.
I am on IV Rocephin but have stopped for a week because of yeast. Was this the 2nd abx although no one else mentioned Rocephin. I told my LLMD I stopped the IV and she said go back on to every other day but said nothing about the Rifampin.
Should I be taking another abx with Rifampin, does Rocephin count as a compatable #2 abx, and do I have a problem now that I have been off IV for a week?
Posts: 262 | From nj | Registered: Dec 2007
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Clarissa
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Patrick posted (and this goes against the resistance argument):
I was on it on three seperate occasions for six weeks each.
The first time I was miserable the entire time. The second and third time it really didn't bother me or seem to do much at all.
It helped tremendously with clearing the brain fog though the first time around. I am having a relapse of some sort over the last few weeks but thats one thing that hasn't come back.
Clarissa
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posted
njgirl14:
I personally don't have the answer for you but your question is the EXACT reason why I'm do this posts as there are so many conflicting direction of useage of Rifampin.
Hopefully more people will reply because my head is spinning, for sure!
posted
I am just to start the wonderful world of Rifampin treatment, 300 MG 2 x daily for 2 weeks, however the kicker is I ALSO have to take Levaquin 500MG daily along with it.
I have not seen this combo done before, and am a tad confused right along with Clarissa here...geezz.
Also when this is done, I start the 70 day Diflucan protocol, I know not to take with these abx's, but they did not mention about waiting a certain time after the 2 weeks before I start the Diflucan up.
Confusing as he77.
Clarissa- Are you seeing a LLMD here in Florida?
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Clarissa
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Rifampin & Levaquin? Okay that's a first.
yes, I'm seeing an LLMD in FL. PM if you want name.
I just vented to my Father (a retired doctor) and he said NO two doctors agree on treatments, especially when it comes to complicated surgeries and certainly TBD's.
He told me to take everything with a grain of salt and to trust my gut. There are just too many different opinions and even if we got our LLMD's in one room, I think the debate would continue for days...(sigh).
posted
Rifampin 600mg once a day + minocycline 100mg 2x a day.
The manufacturer's insert with my Rifampin says:
In healthy adults, the mean biological half-life of rifampin in serum average 3.35 +/- 0.66 hours after a 600mg oral dose, with increases up to 5.08 +/- 2.45 hours reported after a 900 mg dose. With repeated administration, the half-life decreases and reaches averages values of approximately 2 to 3 hours.
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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Andie333
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I take rifampin two times a day (3 of them), along with ceftin.
I am also pulsing tindimax. My LLMD didn't want me taking tindi and rifampin together, so when I'm taking the tindi, I don't take the rifampin.
Resuming it after those 4 days doesn't seem to be a problem for me.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Clarissa
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Dancer (or someone on the board): Thanks for that info!! Can you translate in laymen terms for me what that means? How long does Rifampin stay in the body after taking 600mg? Sorry, I've ALWAYS been horrible in math and science.
Andie: So you take 3 days off of Rifampin when you're taking Tindi? So that would oppose the whole "you have to take Rifampin every day theory. right?"
Rifampin 600mg daily Zithromycin 500mg daily Doxycycline 100mg 3x/day Plaquenil 500mg 2x/day Artemesia 1600mg 2x/day x 5 days, then off for 5 days.
I've been taking Rifampin continuously since May 2007. I've been taking Zithromycin continuously since? last fall (don't remember the exact month, but it's been at least 3-4 months). I've been taking Doxycycline since early last fall, maybe September. Plaquenil and Artemesia were just added a month ago for Babesia. Artemesia is the only thing I pulse.
I've done very well on this combo (Rifampin, Azithromycin, and Doxycycline). I think the Babesia symptoms started coming out after my Bart load started getting low. So far the Plaquenil and Art are starting to eliminate the Babesia symptoms I was experiencing.
I was on Bicillin LA for a long time (> 1 year) and a number of other anti Borrelia drugs from Sept 2005 til Feb 2008.
Hope this helps.
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Clarissa
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Thank you Psano2. My LLMD was literally flipping through a book trying to remember why I couldn't take zith & Rifampin on the same days (sigh) and he came up with "no" but with no logical reason.
I, too have Babs, and would like to add in the artemisae and kill two birds with one stone.
Now, he wants me to take out the Zith, take daily Rifampin and I said, "but I have to have another abx to keep rifampin resistance to Bart down." He claimed the Cumanda was the other abx. Cumanda is NOT an abx.
Ideally, I'd like to take what YOU'RE taking but I haven't gotten his "blessing" but it sure seems like everyone else is getting the blessing of their LLMD's.
The good news is I am getting better but I don't accept his mumblings about why I cannot take zith & Rifampin on same days.
And now, with all the readings of NOT to pulse on Rifampin, I'm worried about growing a resisitant so I feel I should be on daily Rifampin & Zith, agree?
I have looked up rifampin on the swedish national drug homepage or whatever you might call it. Very good information.
It says; � Rifampin should be taken on an empty stomach or 2h after a meal.
Then it says � Plasma concentration after a single dose peaks after 2h and goes away after 8 to 12 hours. Half life is 3h. Concentration in the spinal fluid is low, except for meningitis.
� Rifampin should not be used in combination with; atovakvon, isradipin, itrakonazol, midazolam, nifedipin, nimodipin, praziquantel och telitromycin.
OK that is what I found and there is also a lot of info about interactions, for instance if you are on anti conatrceptive drugs they are not as safe as normally! Might be good to know.
Also it sasy a lot about liver enzymes, they should be checked once a week or at least every 2 weeks.
So rifampin has a SHORT half life and that is why I think it might be good to take it every day.
Now, Diflucan on the other hand has a LONG half life 30h!
Again infofro, the swedish site; Halveringstiden �r ca 30 timmar varvid steady state-niv�er uppn�s efter 4-5 dagar vid upprepad dosering.
meaning you will reach the aimed blood concentration on diflucan after 4 to 5 days.
OK! Let us all get healthy with the rifampin!
Best to you all! Posts: 347 | From sweden | Registered: Feb 2008
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Rifampin (600 mg. once daily), + Roxithromycin + Bactrim DS + tetracycline!
Posts: 78 | From Rhode Island | Registered: Jul 2006
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Vermont_Lymie
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posted
quote:Originally posted by Clarissa: One other question:
Besides Tosho and Swedish Suferrer, is there anyone else on the board who takes Zith & Rifampin on the SAME DAYS?
Bless you all! Maybe I'll be able to sleep peacefully tonight.
This is what I am told to do; take rifampin and zith on the same days.
I have yet to start this protocol yet, will probably wait for late spring, when I will have time to rest in case I need it! Best wishes.
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Clarissa
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Swedish Lyme Sufferer:
Thanks for all of your excellent information. Outstanding work. Yes, this Rifampin "controversy" was really getting to me so I dug up past posts which are all contradictory.
SO, it sounds like, you need to take Rifampin WITH another ABX DAILY to keep the resistance down.
I'm going to triple check with my old LLMD before I start both Zith & Rifampin daily.
Thus far, I don't think the pulsing has caused me resistance as I am improving but the daily doesages of both abx could really give the Bart the PUNCH it deserves in the next few months.
Finally, I've learned from a nutritionist that Cumanda is NOT an alternative to ABX. I knew it! So, scarily enough, my LLMD was mistakened (sigh) so based on my gut, I continued with the Zith (phew).
What would I do without all of you? Thanks for helping me and my BART-BRAIN get to the bottom of this.
posted
Hey I'm on Rif 300mg 2x and Lev 500 mg a day. Why can't I take diflucan with these??? As soon as I started I seen yeast symptons coming back. 1bitten I believe we see the same doc. He didn't say anything about 70 days diflucan for me.
Thanks
-------------------- Theresa Posts: 16 | From Florida | Registered: Jun 2007
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Geneal
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posted
I took rifampin (300mg 2 x a day) along with 600mg of zith (1 x a day).
I also took flagyl (750mg once a week) and diflucan 200mg twice weekly.
I hated rifampin. It was the toughest med on my system yet.
I tried the levaquin (ouch!).
Rifampin gave me horrible leg cramps (especially at night) and yes....bladder cramps too.
I may be in for another round of bart therapy.
My LLMD said I can do Cipro this time.
Hugs,
Geneal
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Keebler
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posted
-
Clarissa - I admire your desire to gather all this together and I, too, swirl at the variations and I'm not even on the medicine.
Your father is correct, even about surgeries, etc. doctors have different approaches.
With TBI, there can be so many variables, doctors and patients have much to learn about TBI, patients react differently or have various combinations, etc. It is an art in progress.
It would be great to have something that was less complex and more understood. Until then, we have to sift through possibilities and hope we find the winning combination.
Good luck - and thanks for doing the work of gathering and sorting.
posted
Seems like hubby is always the odd man out.
Here is his current combo:
Rifampin -- 150 mg daily (increased from 75 mg daily -- LLMD said take as one dose -- not to take 75 mg twice daily)
Minocycline -- 100 mg 3 times weekly
Bactrim DS -- 1 pill twice daily 6 days a week
Diflucan -- 100 mg daily -- decreased from 150 mg daily for this last month and will discontinue in another week after being on this for 3 months I think
Zithromax -- Added when increased Rifampin dose -- 300 mg 3 times weekly -- not on same days as Minocycline
Alinia -- 500 mg daily -- for one month pulsed Art and Alinia 4 days of each -- now just on Alinia
Levaquin -- 500 mg daily -- had been on this for 5 months I think -- dropped it and replaced with the Zithromax. Was only on this for a week in combo with the Rifampin.
This combo is supposed to treat Lyme, Babs and Bart.
Also take HH -- 3 pills daily
New combo with Zith and increasing Rifampin and Alinia doses is really stirring things up -- New symptom of heart palpitations resulted in an ER trip.
Have an appointment with LLMD next Tuesday -- will be interesting to see what comes next.
Hubby had 2 leftover Levaquin so he wanted to try one to see if that had been what was keeping his vagus nerve calmed down previously since the heart palpitations were new since he stopped Levaquin.
So far has been sweating almost continuously and vomited 3 times since supper. Pulse rate increased and palps continue as they have for about 2 weeks now. Tremors and myoclonus activated as well. Definitely would not suggest Rifampin + Zithromax + Levaquin as a combo.
Gave hubby some bentonite clay and he finally seems to have dozed off. The 3 doses of IV Phenergan 12.5 mg will probably keep him in bed most of the day tomorrow.
Hubby takes the Rifampin with food as he does all meds. His LLMD agreed with us that regardless of the normal dosing instructions hubby should take all meds with food.
Hubby is getting concerned, but I am very optimistic about treatment -- this is the highest dose of Rifampin he has ever mangaged to take. Tried to take this med twice before. Even tried having it compounded once without dyes -- did not make any difference in how well it was tolerated.
Bea Seibert
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I'm glad that I ran across this! I'm taking Rifampin ONLY. Also, my LLMD says that with any and all antibiotics; when I get too sick, (herxing) to stop them for a while and then go back on it.
So, this is what I've been doing. I've gone off of it for 3 to 4 weeks at a time. Does that mean that I have a resistance now??
Also this may be a silly question, but does it cause the bart. to be resistant to all antibiotics, or just the Rifampin??
Also, my Dr. has NEVER mentioned the need for blood work, side effects, another antibiotic?? Hhmmmmm??
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
This will be my combo once the Rifampin is added.
Doxy 400mg day Bactrim DS 3/4 800-160 2x day Alinia 500mg 2x day Rifampin 600mg day.
This is to attack both bart, mostly bart + lyme. Any thoughts?
-------------------- Current taking: Bactrim DS 3x Daily, Doxy 400mg 1x Daily, Rifampin 450mg (ramping up to 600mg) 1x Daily, Compounded Nystatin 150MU Caps 1x Daily, Plus supplements to come later. Posts: 60 | From California | Registered: Apr 2007
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CD57
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posted
Good combo foggy. Do you see Dr S.H. by chance? I did Rifampin+ doxy for 9 months.
One thing all you Rifampin users should know: it interacts with a LOT of meds...decreases them. Foggy, esp. the tetras, so you may have to take a higher dose. Also, it can mess up the parathyroid and sex-hormone binding globulin/hormone, so get tested for that. Scott F posted about this awhile back. Mine were elevated towards the end of treatment.
Also, just wanted to throw this out there: Lymeinhell treated Lyme + bart with 9 months of Rifampin + low dose Flagyl, and is doing great. I have not heard of this combo being used but may ask to try it. Hopefully she will chime in here as to her LLMD's thoughts behind this combo.
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lymebytes
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I see the inconsistency and here are more. I have 2 LLMD's, one ILADS one non-ILADS.
The ILADS LLMD said he NEVER prescribes Rifampin with any abx, it is much too hard on the liver. In a "must" situation he might go with a Bicillin/Rifampin combo for short time, but he prefer not to do that, so he doesn't.
Non-Ilads LLMD says Rifampin should never be taken alone, he prescribes it w/Septra w/ great results and says it is easily tolerated by most of his patients.
Now if you use the drug checker at drugs.com there is no interacton with zith and rifampin, but a huge interaction with biaxin and rifampin (same class - macrolides) that confuses me!
I am suppose to try this drug (for a very long time now) I can NOT get the nerve up to do it. The flat our horror stories here have me petrified.
I have yet to see anyone here report it was "the cure" for them, in fact some have said when stopped they just returned to their previous state..I studied it in depth w/searches and I am not kidding, the posts here stop me from trying it.
I need it for Ehrlichia not bart - 1.5 years of Biaxin killed Bart, that was simple. For me killing ehrlichia is impossible, I have a problems with both choices doxy and rifampin.
CD57
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posted
Lymebytes, it might not be that bad! It might your silver bullet!
Yes, lots of inconsistencies amongst the docs who treat us, hmmm?
Lymebytes, was curious: how do you know that your bart is gone? I was curious as to how you know that for sure it is, symptom-wise, that is.
Posts: 3528 | From US | Registered: Apr 2007
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Alv
Unregistered
posted
My combo Azithr 600mg , Rifapmin 600mg( 2x3) but always take it all 600mg and Levaquin 500mg.
Felt a tightness on my left side.Stoped it myself.Continue HH capsules 3x1 from HEPAPRO.
Woke up for the first time WOW felt good...HH is doing something , continuing only Rifampin and azithr also.Oh by the way Only ANDROGRAPHIS for lyme yet.
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troutscout
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posted
I hate to say this...but Clarissa....each person is different...as are physicians...and quite frankly ...I see you asking for...and receiving Medical Advice from unlicensed people in here.
I am afraid you may be exposing us to some things that we amy not need.
Trout
PS...What I'm saying here...people, please refrain from exposing yourself to litigation here. It is OK to say what YOUR LLMD says or what a medical publication says...but, don't say it 1st person. Clarissa...all medical information on MOST subjects...are contradictory.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Clarissa
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posted
Sorry if it offended anyone. I "think" most people on the board understand that none of us are claiming to be doctors and I, personally, would never hold anyone on the board responsible for medical advice.
I was just noticing a pattern and my protocol didn't fit the pattern. Ironically, I'm doing well and maybe the off-beat approach really did work for me.
I understand what you're saying, though. It can be misleading, confusing and opening up Pandora's box.
I was just trying to gather all of the controversial protocols in one thread to show how confusing it all can be...probably not 100% necessary for others but it was my way of alleviating my anxiety over the matter at THAT time...which was months ago (see original post date).
Next time I'll just goto the gym or take a xanax but I truly don't think I offended or mislead anyone.
I think my peers on the board know that I was just trying to get to the bottom of the Rifampin/Bart black hole.
Boomerang
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posted
Clarissa, I think your thread has been great. Thanks so much for putting all of this info together!
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
No I see the regular Dr. H. Non ILADS member although he might as well be, he reads and constantly researches all the literature. Thanks for the advice on the hormones CD, And yeah I'm aware that rifampin decreases a bunch of medications. No biggie.
-------------------- Current taking: Bactrim DS 3x Daily, Doxy 400mg 1x Daily, Rifampin 450mg (ramping up to 600mg) 1x Daily, Compounded Nystatin 150MU Caps 1x Daily, Plus supplements to come later. Posts: 60 | From California | Registered: Apr 2007
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