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Liquid rifampin can be compounded. I get my done at the hospital pharmacy but there are compounding pharmacies that also do it.

I cannot tolerate adult doses of rifampin. In fact my bartonella is very susceptible to rifampin but the herxs are severe. Last night after restarting rifampin 4 days ago ( I worked my way up to 20 mg twice a day) I had the most severe herx ever. It was mind boggling painful for 3 hours. Even with lots of vicodin and xanax. I will have to take a day off and restart at 5 mg. I will probably try pulsing rifampin every other day. I wish I had access to morphine to help with the herxing.

The liquid has to be refrigerated and is only good for 30 days. I do not know how I could manage without the liquid. It allows me to take very low doses. I am also on azith and doxy but the rifampin always puts me off the deep end.

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Red are you sure about the refridgeration? The pharmacy that compunded it for my 8 y.o. gave it to me warm and did not tell me to refridegrate it! ugh....

Wow sorry it is so painful for you, that must be awful. My daughter had a crying/sad herx one night and that was it. I see some marks that have come out on her arm, they are not bright purple but they look like stretch marks. That's it and she's been on for 10 days.

Edited by Hopeny
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Red are you sure about the refridgeration? The pharmacy that compunded it for my 8 y.o. gave it to me warm and did not tell me to refridegrate it! ugh....

Wow sorry it is so painful for you, that must be awful. My daughter had a crying/sad herx one night and that was it. I see some marks that have come out on her arm, they are not bright purple but they look like stretch marks. That's it and she's been on for 10 days.

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Red are you sure about the refridgeration? The pharmacy that compunded it for my 8 y.o. gave it to me warm and did not tell me to refridegrate it! ugh....

Wow sorry it is so painful for you, that must be awful. My daughter had a crying/sad herx one night and that was it. I see some marks that have come out on her arm, they are not bright purple but they look like stretch marks. That's it and she's been on for 10 days.

Yes I am positive about refrigeration. I have received it both from a compounding pharmacy and Duke Children's Hospital Pharmacy and both said refrigerate.

Yes my herxs are horrible. They retard my treatment as I have to lower meds to keep them under control. My LLMD says I have the most pain of all her bart patients.

And yes rifampin is notorious for interfering with many medications including doxy. Rifampin causes the liver to super-metabolize many drugs before they can enter the blood stream. But it is dose dependent. In other words it happens much more at higher doses. I have a program from a company that tested my 450 cytochrome profile and it is plugged into all drug interactions.

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Can i ask anyone who may know....

we are probably starting rifampin this month.

ds12 is on 500mg zith, 300 cefdinir bid, and valaclyvir 1g bid...

should the dr lower these doses or eleminate 1 0r 2 of the above abxs when starting rafampin....

he did not say to do that...

I was going to put a call in to him tomorrow anyway...but any info or experiences appreciated.

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My DD8 is on 200MG Zith and Rifampin. We switched off Biaxin and Augmentin. Rifampin as I understand is always used in combo with another med, for Lyme/Bart they prefer Doxy with Rifampin but my DD HATES liquid Doxy and I told our LLMD I just cannot face the battle everyday. If I knew it would work though of course I would. You can do go drugs.com and check interactions. Personally i would keep to one abx + rifampin. Rifampin is a big gun.

A number of moms on this board said their DC's are also on Rifampin/Zith with good results.

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Fixit - My DS took rifampin in addition to amoxicillin, azithromycin, and plaquenil. At that point in his treatment our LLMD said we needed to tackle intracellular, extracellular, and cyst forms of lyme all at once. If we didn't do all this together then the lyme could just change forms and continue to evade the meds. I'm not familiar with the specific meds you listed, but I would assume the doc wants your DS on all of them together if he didn't say to stop any of them. As far as lowering doses, my understanding of rifampin is the opposite - it can make other meds leave the system quicker, so you could possibly need HIGHER doses. Def check with doc though.

 

DS had the worst herx ever on Rifampin - it literally put him on the floor, sobbing in pain, unable to walk. But we pushed through it, and after 2 weeks of horrible pain and flu-like symptoms, he had a major breakthrough in treatment and felt the best he's ever remembered feeling. Rifampin was a miracle drug for him, but it hit VERY hard in the beginning. I wish I had thought of liquid micro-dosing. Sure would have been easier on the system to start slower and build up!

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Fixit - My DS took rifampin in addition to amoxicillin, azithromycin, and plaquenil. At that point in his treatment our LLMD said we needed to tackle intracellular, extracellular, and cyst forms of lyme all at once. If we didn't do all this together then the lyme could just change forms and continue to evade the meds. I'm not familiar with the specific meds you listed, but I would assume the doc wants your DS on all of them together if he didn't say to stop any of them. As far as lowering doses, my understanding of rifampin is the opposite - it can make other meds leave the system quicker, so you could possibly need HIGHER doses. Def check with doc though.

 

DS had the worst herx ever on Rifampin - it literally put him on the floor, sobbing in pain, unable to walk. But we pushed through it, and after 2 weeks of horrible pain and flu-like symptoms, he had a major breakthrough in treatment and felt the best he's ever remembered feeling. Rifampin was a miracle drug for him, but it hit VERY hard in the beginning. I wish I had thought of liquid micro-dosing. Sure would have been easier on the system to start slower and build up!

 

Thanks to all.

I will look into the liquid form too, and good to know about refridgeration.

I just received a call back from dr and yes..stay on all abxs at current doses.

With this info..i will wait until Christmas break to start, since it sounds like things can get rough.

I hope i can stay as strong as all of you holding through a herx like those mentioned.

Maybe DS will not herx and only continue on the progression toward being healed!!!!

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Fixit I was worried about the Herx too. We had the same amount of herx we usually have when DD switches meds, one really bad night of crying. She has not said her pain is worse. I have seen a few angry moments worse than normal, but that's about it. We are into week 2 so I may not be the best source of information, but just to let you know in our case was not as bad as I expected. I now for others it has been very bad so I hope you have the same experience we did. Good luck.

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Fixit I was worried about the Herx too. We had the same amount of herx we usually have when DD switches meds, one really bad night of crying. She has not said her pain is worse. I have seen a few angry moments worse than normal, but that's about it. We are into week 2 so I may not be the best source of information, but just to let you know in our case was not as bad as I expected. I now for others it has been very bad so I hope you have the same experience we did. Good luck.

 

That is good to hear! I'm torn. Don't ever know how these kids will react. And if finals are coming i don't know if i want to chance him getting worse and having to deal with that. On the other hand, i want to keep moving forward.

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I was torn too and put it off. DD tested negative for Bart by Igenex and Quest, had no stretch marks, and was never off abx long enough to do the other lab I can't recall but everyone says is the best for bart, but she had foot pain, psych symptoms, and some anger. Her pain got better but then came back, so I decided to try Rifampin before taking another good look at IV. About 5-6 days after starting, I notice a bunch of stretch marks have shown up in middle of her arm. Wow, validation. Thank goodness we decided to try it. Good luck with what you decide.

 

Fixit I was worried about the Herx too. We had the same amount of herx we usually have when DD switches meds, one really bad night of crying. She has not said her pain is worse. I have seen a few angry moments worse than normal, but that's about it. We are into week 2 so I may not be the best source of information, but just to let you know in our case was not as bad as I expected. I now for others it has been very bad so I hope you have the same experience we did. Good luck.

 

That is good to hear! I'm torn. Don't ever know how these kids will react. And if finals are coming i don't know if i want to chance him getting worse and having to deal with that. On the other hand, i want to keep moving forward.

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