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» LymeNet Flash » Questions and Discussion » Medical Questions » Rifampin

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Author Topic: Rifampin
timaca
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HI all~ There is some possibility that I may be started on rifampin in the near future. I'd love input on those of you who have used it. Please let me know dose, timing, empty stomach or not and if it affected your GI tract (since I had C. diff for 11 months)....AND if it helped you or not...also how long you were on it, and any thing else you may want to share!

Thanks in advance.

Timaca

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Jill E.
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Timaca,

I'm on it but have been ramping up at a snail's pace because it affects me so strongly and I still need to be able to work. I can only pray I'm not allowing the Bart to become resistant in the meantime.

The one time I took it first thing in the morning on an empty stomach, I had terrible stomach pains. So I take it an hour or two after breakfast. I know that probably isn't as good in terms of absorption but it doesn't mess up my GI tract that way.

I've compared notes with other Lyme pals who've been on Rifampin. One other could not take it on an empty stomach, others had no problems, most complained of brain whooshing/dizziness more than GI stuff.

Rifampin has been the hardest medication I've been on, but that's me, doesn't mean you'll have that reaction. I have a very bad case of Bart, so I do herx on Rifampin while rarely herxing on Lyme meds.

I have very bizarre neuro symptoms from Bart (electric shocks in feet and legs, severe myoclonus, tremors, etc) so Rifampin herxes sometimes make those worse. But also, some of the initial reaction I got to the Rifampin such as dizziness and feeling like I'm on a boat have diminished or passed. But for the first few weeks, I'd have to hang on to things because I was so off balance. My body did acclimate as I ramped up.

I'm glad to hear that your C.Diff. saga is resolved. I know you battled that for a long time.

Rifampin can be hard on the liver. Make sure you get your liver enzymes checked regularly on Rifampin.

Rifampin also interacts with a slew of medications because it's a liver enzyme inducer. It's important to discuss your regimen with your LLMD or a good pharmacist because Rifampin can cause other medications to either put too much or too little of a dosage into your bloodstream. Meaning you may need to adjust dosage of everything else you are on.

Rifampin can also affect hormones of all types, including female. So far so good with me, but I've known two women who had horrendous hormonal imbalances from Rifampin (including affecting birth control).

Take care,
Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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Andie333
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Timaca,

I've been on rifampin for awhile now, because my bart symptoms were pretty nasty.

In the beginning, I did ramp up slowly from a quarter dose to full dose. It seems it did exacerbate a lot of neuro symptoms initially: some mild seizure activity, audio and olfactory sensitivity, numbness.

But by the time I was up to full dose, all those symptoms were gone, and they haven't returned. I felt I made significant progress on rifampin. Have tried to wean myself down, only to find symptoms back in full force. So I'm still taking it.

Twice a day for me on an empty stomach.

Hope this helps!

Andie

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timaca
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some questions for those who posted...what are your bart symptoms?

What is a full dose?

Andie, how long have you been on it?

Thanks all!!

Timaca

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lymeinhell
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Rifampin gave me my life back (along with a very very low dose of Flagyl).

The standard dose of Rifampin is 300mg twice a day.

It's only truly effective on an empty stomach. I took mine in the am 90 minutes after I took acidophillus (around 7 am), and then waited an hour to eat. Again at 4pm.

I too had to slowly ramp up to the full dosage, because a week into it I ended up with a full blown herx - my skin was on fire!! After a 2 day break, my LLMD had me start over with 1/3rd of one 300mg capsule for a few days, and up the doseage by that much every 3 days.

Neuro stuff was exaggerated at first - hanging on to walls for balance for a while. I honestly don't know about stomach issues - my stomach was so trashed before I started it I wouldn't have known the difference.

I spent 9 months on it (and Flagyl) and was slowly weaned off it and have been only on Cat's Claw for over 2 years now.

I've had Lyme for almost 15 years now, but it was the repeat bite and Bart than brought my life to a crashing halt.

It's a tough drug at first, but I know many besides myself who have gotten well because of it.

--------------------
Julie
_ _ ___ _ _
lymeinhell

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seibertneurolyme
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Hubby took this med with food as he has every other med. He definitely absorbed it and herxed on it.

Only managed to take a total of 20 pills (150 mg)in something like 30 days. Even so, this is the med that woke up his brain. Tremendous improvement in cognitive issues. Improvement lasted for over a year.

Increased neuro symptoms -- seizure-like episodes and tremors/myoclonus took about 3 months to resolve as far as I remember. What seemed to turn around his neuro symptoms at the time was IV Phosphatidylcholine -- I think we did a total of 25 or maybe it was 50 vials over 2 or 3 months.

Have heard that med crosses the blood brain barrier more in patients with encephalopathy. Don't know if that is really true or not.

Hubby may try this again in the near future. If so, will have it compounded without the dye. Have wondered if the dye is one of the factors which cause side effects. Per both the brand name manufacturer and a generic manufacturer the dyes have no therapeutic purpose. I think it was Wellness Pharmacy who told us they could compound this without the dye.

If you are dehydrated you will notice the effects of the dye much more in your urine. Since hubby never got to therapeutic dose he did not notice the dye in his sweat or tears or saliva.

Good luck.

Bea Seibert

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davidx
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I take rifampin on an empty stomach. My dosage is 600mg/day but I only take it once per day.

I am curious though about other who are taking it twice a day. At first I was taking 300mg in the morning and then 300mg at night but my LLMD said to take all 600mg once a day.

Do most of you take it once a day or twice a day?

--David

--------------------
Same nightmare, different day!

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valymemom
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My son takes the 600 mg once a day on an empty stomach at night. He began this protocol a week ago. He takes dozy everyday and zith (but I am not sure of zith's schedule)

So far - no stomach problems.

What are his bart symptoms? Not quite sure - I always thought babs was his culprit but now after years he has foot pain and OCD has crept in this past year.

His symptoms, though, are daily headache, muscle pains, joint pains, fatigue, insomnia, short term memory problems and TMJ. The daily pain level is always, always high.

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Jill E.
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I split it into two dosages - early morning and late at night, otherwise I wouldn't be able to function at all.

Yes, I had the "holding on to walls" for balance stuff for weeks when I started Rifampin. Had to hold onto the shower wall, hold on to my chair at the computer - I felt like I was on a moving ship at all times.

I think my Bart symptoms are: burning (part of that is Lyme because it has improved on Lyme meds, but not completely), paresthesia, electric shocks in feet/legs/fingers, myoclonus, tremors, increased muscle twitching (the twitching had settled down on Lyme meds, then worsened with the onset of the myoclonus and tremors), possibly brain fog although I only get that now and then, sore soles.

I think the blurred/pulsing vision when looking at patterned objects might be Bart because it seems to be worsening despite Lyme medications.

Also, I get the occasional one-red-eye which I hear is Bart.

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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Jill E.
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Cave,

Twice since the tick bite I've had one of my eyes turn blood red and of course the internist and opthalmologist said it's just conjunctivitis and you can get that from sneezing or coughing. Well, I wasn't sneezing or coughing at the time. But it did resolve over time like most conjuctivitis.

I believe it was here on Lymenet that I've seen a few posts about the devilish red eye as being associated with Bart. I'm presuming this is anecdotal because I don't recall studies on it (like anyone would study red eye and Bart..but I can dream).

One of my Lyme pals sees a neuro-opthalmologist who happens to have several Bartonella patients and says that Bart can really affect the eyes. I suppose this means optic nerve, I don't know. I hope to get well enough some day to drive to see that neuro-opthalmologist.

In the meantime, my regular opthalmologist checks me but he has no experience with TBDs.

I had asked my LLMD whether my pulsing/blurred vision is due to TBDs in the optic nerve or the brain. He was thinking it was more due to brain involvement or neurotoxins than the eye itself.

Also, did you ever try Zithromax for Bart? When my doctors were trying to figure out how to treat me for Bart without messing up my liver, there were a couple of suggestions that Zith is used for pediatric Bart. But it was knocked out of the running because it can be hard on the liver. Rifampin can be very hard on the liver and it took months of discussions until I could get an agreement to go on Rifampin, as long as my liver enzymes are checked constantly.

I had to get a less-than-pediatric dose of Rifampin made up at a compounding pharmacy, and even starting at that low a dose I was almost completely non-functional from the herxes. I can totally relate to your comments about the horrible experiences of treatment Bart.

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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nancyb
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The red eye and possible association with Bartonella certainly caught my eye.

My daughter was being treated for Lyme and she started to slowly go back downhill after really good improvements.

Then she started getting this one bloodshot eye in the inner corner. I mentioned it to her LLMD and he didn't have an answer.

Just last month she had a 1:64 indeterminate Bart test.

Her LLMD put her on 300mg of Rifampin and 250mg of Zithro - she's almost 10. She takes them on a mostly empty stomach away from dairy.

So far she has had increased headaches and I'm hoping that this is an indication of some bacterial die off in her brain.

Question: Is there anything that can be done to help with her liver enzymes?

--------------------
The Canadian Lyme Disease Foundation www.canlyme.com

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Jill E.
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Nancy,

I had headaches for the first few weeks of Rifampin, and I still get them every now and then from Rifampin (and I'm not even up to the full dose yet). So I have no idea if it's a side effect of the medication or die-off as you say. Let's hope it's die-off!

What are your concerns about liver enzymes? Are hers already elevated? Were they elevated before Rifampin? Or are you concerned that Rifampin will cause it?

The herb, milk thistle, or liver herbal support blends that contain milk thistle and other liver-supporting herbs such as artichoke, dandelion, etc., are often used for liver support while on antibiotics.

However, I have avoided milk thistle while on Rifampin but I'm really not sure if it's an issue or not. I had read some articles aimed at HIV and hepatitis patients that milk thistle may interact with a number of medications, Rifampin being one.

Rifampin induces a liver enzyme detox pathway that is also used by many other medications and herbs, so Rifampin can cause either too much or too little of the other medications to be released into the blood.

But I talked to a nutritionist who said she did not think there was a dangerous interaction between Rifampin and milk thistle, but the effectiveness of the dosages might be affected a little.

So as an alternative to milk thistle, I plan to try a homeopathic liver detox tincture at some point. But I have to ramp up on Rifampin first and try to handle those side effects before I add in a homeopathic remedy that might not agree with me (I don't tolerate homeopathy well).

Take care,
Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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DolphinLady
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I'm completing month 2 on rifampin and making very good progress with bart symptoms, however it does make me tired. 300 mg 2x/day on empty stomach no problem.

I did 10 months of doxy, 10 months of zithromax 2 different times and neither did anything for the bart. Rifampin crosses the bbb from my understanding. Perhaps that is what was needed in my case.

Best luck to all.

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nancyb
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Hi Jill

Thanks so much for responding about the liver enzymes.

My daughter hasn't had hers checked yet but I am worried about them now that I have read that Rifampin may elevate them. I just don't want her treatment to be jeopardized because they have elevated.

Btw, what is the test for liver enzymes?

I certainly want to do what I can to keep them at good levels and I will look into your suggestions about milk thistle and a natural detox.

My daughter didn't get too many headaches pre-rifampin but now they are almost daily and a bit more intense than usual. I sure hope it's a sign of die off and not a reaction to Rifampin.

Thanks again for the information Jill. [Smile]

--------------------
The Canadian Lyme Disease Foundation www.canlyme.com

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lymeout
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The doctor has put my daughter on IV Rifampin because of stomach problems. Have any of you done IV Rif? She does 5 days rifampin/2 days oral zith. We were told that there was no herxing with bartonella. Clearly, from your descriptions, that is not the case!

Also, have any of you experienced rises in titres for EBV, CMV, HHV6, etc. while going through various treatments? I don't know if there is any correlation between spikes in bart, lyme and the viruses.

Thanks for all the great information on this thread.

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Jill E.
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Nancy and Lymeout,

Nancy, bloodwork for liver enzymes is very simple and not terribly expensive. At the medical clinic where I go, it's called a hepatic function panel. Or if your daughter is getting a Comprehensive Metabolic Panel, it will be part of that. Your daughter's family physician can order it, or your Lyme doctor can write a lab requisition you can take to just about any lab.

I did not mean to worry you about liver enzymes. I have to be cautious way above and beyond the norm because I sustained serious liver damage from Ketek. So any antibiotic that has a tendency to be hard on the liver can be truly life-threatening to me.

One of my LLMDs said that Zithromax is harder on the liver than Rifampin and that she has not seen a lot of liver problems on Rifampin. My other LLMD who I've been seeing for far longer did hesitate to put me on Rifampin and my internist was very concerned considering my history.

A Lyme literate pharmacist in my city told me that Rifampin is very hard on the liver and she would avoid it for anyone with liver issues.

So you can see that the opinions are all over the place. But better to be cautious and have liver enzymes checked. Plus, your daughter should have them checked while on any antibiotic.

Lymeout, I asked one of my LLMDs if Bartonella treatment can cause herxes because I feel that I do herx on it, and I've seen so many posts here on Lymenet and other Lyme boards that people do. She said any bacteria of these types can cause herxes.

My other LLMD did not say specifically there are Bart herxes (he did not say there weren't), but when I told him all the bizarre reactions I was having while on Rifampin, he said that's typical with Bartonella (things like electric shocks in my fingers, feeling like I'm being stung by bees, increased myoclonic jerking, feeling like I'm on a boat and grabbing onto walls for stabilization, etc).

And yes, my titers for EBV and HHV6 are positive again, after having gotten well from them years ago. So obviously the strain of tick-borne diseases on the immune system causes lots of latent or dormant viruses or mycoplasma to come out of hiding.

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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nancyb
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Hi Jill

Not to worry - you didn't start me worrying about liver enzymes as the LLMD said my daughter was going to do a month and then do an enzyme test before starting on month 2.

Luckily we are in Canada so I don't have to worry about the expense of tests so I'll make sure she gets the works when it's test time.

Since she's on Zithro and Rifampin, I'll definitely be looking into something to help with her enzymes.

I'm sorry to hear that you've got postive titers again for EBV and HHV6. It's discouraging as just when you think you've got things under control something sneaks up on you.

--------------------
The Canadian Lyme Disease Foundation www.canlyme.com

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mtnwoman
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I can't see that anyone has mentioned Rifabutin, supposedly a cleaner (and much more expensive) version of Rifampin.

My infectious disease LLMD in NC suggested this over Rifampin.

Anyone have any experience with this?

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Geneal
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Good evening all.

I believe I am to start rifampin with next LLMD visit for bart.

Curious though as someone mentioned feeling as if they were on a boat during a herx.

I feel like that now. I even described it to my husband as I had come off a boat that had

been rocking and rolling for a couple of days. Can't seem to get my "land legs".

I get the hang-over eye thing too, along with swollen lymph nodes (especially in the groin area), sore and aching soles of feet.

Is that boat sensation bart?

I swear Lyme and co-infections are wearing me out.


Hugs,

Geneal

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Jill E.
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Hi Geneal,

The sensation of rocking back on forth like being on a boat got much, much worse and constant for me for several days when I first got on Rifampin. Then I get a little flare of it now and then. So given that it's a current symptom of yours, just be prepared that it might worsen during a herx. It was never a major issue for me until Rifampin so I think it really brought it out in me.

Given that I avoid going on boats because of my motion sickness, it's ironic that I feel like this on land!! I had to stop driving for a while when I first started Rifampin because of all the dizziness and related stuff. But it calmed down as my body acclimated.

That's interesting you mentioned the lymph nodes in the groin. I had groin pain in the right side area when I first started Rifampin, but I didn't notice any lymph swelling. I mentioned it to my LLMD who didn't say anything. Now I'm thinking it probably was a lymph node area - again, a Bart herx.

Yeah, I'm with you regarding getting worn out by all this. And I haven't even started Babs treatment yet!

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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mtnwoman
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Geneal,

Any other abx to go with your rifampin?

Whst other abx do folks combine rifampin with?

good luck!

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Geneal
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I am not sure of any other meds along with rifampin yet...

but I can't do doxy....not with the sun blazing here and my two young children practically living outside.

I am already on zithromax, bactrim and flagyl and diflucan. Finishing up 3rd month of malarone.

I am ready to get off of this rocking boat!!!

I used to love to go fishing-(deep sea charted trips).

Guess I'll be buying my husband fish at the local market from now on. (I am allergic to all seafood!)

Hugs,

Geneal

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mtnwoman
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quote:
I am already on zithromax, bactrim and flagyl and diflucan. Finishing up 3rd month of malarone.
All at the same time?! And rifampin is going to be added? Wow.

Keep in mind that some reference sites say rifampin decreases mepron absorption by 40%.

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lymeout
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Does anyone know how long we are looking at for rifampin treatment? I know a lot of variables go into this, but Andie, when you mention that symptoms come back when you try to wean off, I get concerned about it.

Jill, thank you so much for responding to the virus question. We can't get to the doctors with all of our questions; we really do have to rely on sharing our experiences to get through this without going crazy!

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Geneal
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Dear mtnwoman,

I am going to be finished the malarone in about 5 days...

I hope not to be taking all of these meds with rifampin.....

It would be a nice change to be under 25 pills a day.

Somedays with the supplements and probiotics, it is a little much to remember.

Hugs,

Geneal

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tory2457
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Hi to all,

I'm starting Rifampin, Tindamax and Mino shortly. I believe my llmd told me to take all the Rifampin at once, not to take it twice a day.

All my scripts are at the pharma, and don't have the dosages.

I am a little nervous as to how I'll do, but he said I should try to push through things.

I'm fortunate to be considered a slight case, but I've had lyme/MS for many years.

Have lesions in my CNS - brain and spinal- but lucky that I'm not very sick!

I see him after 5 weeks, and I have a script to get my liver checked at week 3.

Best to all,
tory

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Jill E.
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Lymeout,

I was told that treating Bartonella with Rifampin is a longer commitment than with Levaquin. But I've known people who've relapsed a time or two no matter what.

From what I was told, I will have to be on Rifampin a minimum of six months, probably longer. I have one pal who has similar extensive central nervous system symptoms to mine and I think she was on Rifampin eight or nine months.

According to Dr. B., people need to be on Levaquin a minimum of three months.

So Rifampin is probably at least twice as long a regimen - possibly longer.

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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Boomerang
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Hubby started Rifampin today. Made me a nervous wreck. After reading the responses, I was afraid it would mess up his stomach.

Didn't seem to bother his stomach, but he took it with food today. Just checking to be sure he wasn't allergic, and how he responded.

He's done flagyl pulses like a trooper, so I'm hoping the Rifampin will really help him.

Michelle will holler at me, but he still hasn't started the Armour Thyroid yet.

I'm just so nervous about the Armour stuff, and messing with the system.

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nicolette
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I was on Rifampin for about a month. My LLMD said that if it was going to kick Bartonella's butt that it would do it in that amount of time. Based on everything I've read I would disagree. I think he just doesn't have much experience with that abx....anyway, I had minor improvement after a month, he took me off and now I'm on IV Zithromax. I'm also taking artemisia tincture. I'd like to go back on the rifampin to see if I can do better with it.Does anyone know if there are contraindications of Rifampin with artemisia?
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Boomerang
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nicolette, what do you mean about the month timeframe? You don't think it will work in a month or ?

Thanks!

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nicolette
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What I meant about the month timeframe is that I've read it can take 3, 6, 8 and more months to kick Bartonella using Rifampin. It's long-term just like all other ABX. However, my LLMD took me off it after a month and said it should have worked in a months time. This was confusing to me but I went with it. I am now asking him if I can go back on for a longer period of time because I felt like it was helping a bit - not huge improvement - but some.
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Boomerang
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Hi all. Just wondering how everyone on Rifampin is doing now.

Hubby has been on it for 11 days now, and it really kicked him hard. He's taking 150 2x per day with food.

His neuro symptoms have been worse, but he is starting to "look" a bit better the last couple of days.

After reading thru this thread again, I'm sure hoping and praying it helps his neuro symptoms.

So, how is everyone doing now?

Thanks!

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Boomerang
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just bumping for responses........

Thanks!

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lymeout
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Thanks for bringing it back up, Boomerang. We just got bloodwork back - the first since starting rifampin. There was a new one that I did not understand - glomular filter rate. She measured 60, which was at the bottom of the normal rate for her. A note indicated that persistent reduction for 3 months defines chronic kidney disease. Until I can talk to a doctor, I am assuming that this might mean she is not eliminating toxins through the kidneys efficiently. Have any of you had this test, or do you know anything about it?
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Jill E.
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Lymeout,

It is one of several kidney tests. The doctors will also look at creatinine and BUN.My understanding is what yours is that the test does have something to do with the kidney's ability to filter and excrete toxins (my dad has kidney issues from a non-antibiotic medication that was pulled off the market so I'm trying to remember everything he has said about his tests).

Rifampin, from what I understand, is primarily metabolized and excreted through the liver, meaning it's harder on the liver than on the kidneys. So the question would be whether it's the Rifampin or something else that is putting stress on the kidneys.

I know that when people have serious kidney issues, a low-potassium diet is often recommended. But obviously you'd want to check with a doctor, probably a nephrologist (kidney specialist) first.

Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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lymeout
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Thanks Jill. We are getting her on a more aggressive detox routine today. Hopefully,that will help.
Another question. Once you reach max dose of rifampin, how long before herx dies down and improvement begins? I know this is dependent on the individual, but I would like to hear some experiences. Thanks.
Cindy

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Boomerang
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Cindy, Hubby hasn't had the test you are talking about, so I can't help you with that one.

Can't help you with the herx either, since he's just 11 days on it. I'd be curious to hear some responses though.

Thanks!

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Anneke
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Hello Rifampin friends,

After 3 weeks of slowly ramping up and having a miserable herx. with lots of neuro stuff and headaches - I HAVE HAD THE MOST AMAZING 5 DAYS!! i am so happy I could just skip and dance around!!

The herx./side effects in the beg. were: tremors, chills, lots of headaches, neck pain, muscle spasms, and facial pain.

I now have a huge surge of well-being, stamina, brain power and clarity, drive/motivation, and NO pain! I felt so good yesterday, I actually went jogging! I haven't done that in ages, and it felt great.

I am just so struck by the difference in my daily behavior from when I am feeling very sick and when I am doing great. Bills and finances, usually too overwhelming to tackle, become manageable, and I have a huge desire to get them done. Suddenly, I am interested in talking to friends, answering my phone, checking messages, emailing, etc. I feel more optimistic, and find so much more pleasure day to day. I actually enjoy living, instead of wanting reprieve from my body and reality. And, I need a lot less sleep. Amazing... it helps me have more grace on myself when I am sick.

Best wishes to everyone,

Anneke

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Boomerang
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Thanks so much for the report. Very encouraging.

I did notice that hubby complained of chills and of course the headache pressure.

So glad to hear you are doing better!

Best wishes.

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timaca
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Anneke~ I am so glad to hear of your good days! I hope that they continue! I can sure relate to what you are saying....the difference between good and bad days.

May your good days increase and your bad decrease!

Timaca

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lymeout
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My
daughter has had a resurgence of night sweats. Have any of you experienced this? I know it is usually related to babs, but this symptom had been quiet for some time until she started rifampin.

She still isn't up to full dose, so I guess she will continue to herx until she has been at max dose for a while. I wish we had a guidebook for all of this! We have been at this for 5 years, and I still feel "in the dark" most of the time!

I feel the most reliable information is that which I get from you

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