Topic: Having Trouble with Rifampin at 150mg, whats a good approach
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Hey everyone,
I know I've been M.I.A., but I was trying to stay off the boards for a while so not to "become" the illness.
Went to my LLMD last week. I hadn't seen him in almost 6 months b/c he stopped taking insurance and went to cash only.
He started showing my slides on a tablet of blood smears he was doing in his office and when I saw the one of Bartonella, I told him that it looked just like the slide I had created. So, when I showed it to him, he said this might be my biggest problem and started me on Doxy 100mg 3 x day and Rifampin 150mg/day knowing how sensitive I am to meds.
By day 3, the Herxing became so intense, I had to hold yesterday. My son turns 13 today, so I wanted to try and take him to dinner as well, but even without his birthday, I knew another dose would possibly land me in the ER.
Here is what is happening: Flu like symptoms galore, low grade temp 99.2-100.0 from 3pm on. My Anxiety went from a 3-4 to a 10/10. Internal tremors too. Emotionally, I feel like I'm gonna burst into tears all day. It's either my neck or spinal cord at the brain stem area feels like it's pulling and very stiff. I'm very weak and aching all over. Lots of head pressure and pain too.
It's discouraging to see many of you on 900mg of Rifampin daily and I can't even tolerate 1/6th of that dose.
So, two things: If you can relate to this, please let me know. If you have suggestions, please do share.
LLMD says I can go every other day at first, but I should work up to 300mg/day on the Rifampin. He said the Doxy helps the Rifampin work better and helps with Resistance. No doubt I'm hitting it, and I know you have to go through the fire to get to safety, but I always wind up turning back to the middle of the circle.
I just don't detox well and everything I try and do for detox just doesn't seem to help.
Thanks in advance,
Gary Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Gary -- I can totally relate. The first time hubby tried rifampin I think he managed to take 10 pills in either one or two weeks time frame and it seems like there might have been an ER visit or so in there.
2nd try he had the med compounded without the dye -- could not tolerate that any better.
Anyway -- fast forward to a few years later.
I would suggest levaquin or cipro or factive first before adding in the rifampin. That might make it easier to tolerate.
Hubby did either 30 or 60 days of levaquin by itself first. Then he was put on a 5 drug protocol to treat babs, and bart and lyme all at the same time. Can't remember right off which order the drugs were added -- but it was weeks or even months before adding each new drug.
It took him 8 months to get to what that doc considered a therapeutic dose -- stayed at that dose for 2 or 3 months and then just kept pushing up does on meds for several months. Also at some point we added in factive for at least 3 or 4 months -- may have been much longer on that one, but I would need to look back at my notes. Think it took about 2 years in total to go from numerous coccobacilli on bloodslides to a clean bloodslide.
I do know that when hubby added in the rifampin he started at 50 mg per day. Since he had been on the other meds continuously for several months he was able to ramp up fairly quickly -- in maybe a month I think.
The 5 drugs were -- low dose mino, low dose zith (2 or 3 days per week), alinia, bactrim and rifampin.
Hubby also took the amino acid l-arginine and felt that helped. But you can't take that if you have any herpes viruses.
Cryptolepis is also very good for bart -- can't remember if he took that at the same time or it that is when it was in extremely short supply.
I would lower the daily dose rather than skip doses myself.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thanks Bee, unfortunately, the LLMD is in charge of what I take, but I will certainly bring this up to him on my next visit. He knew I was going to have trouble, thus the low starting dose.
This disease is INSANE ! Hard to believe MRI's are clean in my case. Hard to believe this Sh*t hasn't killed me by now.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi.
I am at 600mg rifampin daily.
But the first ten days at 300 mg per day were not easy.
I paired the rifampin with mino.
And the first tens days were very very difficult.
I felt like a monster.
lots of folks started out with smaller amounts and worked their way up.
Can you split the tablets and start lower?
Hang in there!
The results I've had from rifampin were worth those first ten days of straight hell.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Lyme twister-- I think we might go to the same doctor..
I also have big troubles with Rifamkin.. I only took 6 pills and it practically killed me.
LLMD said he might try me at 150 but before that he was going to see if there is a pediatric dose I could start on..
In the meantime I am going to take azithromycin 500 daily and bactrim 875 BID.. He said that combo would kill a tiny bit but hopefully not send me over the edge. Can't take doxy cause it hurts my stomach.
Then back to a very small dose of rifamkin.. I refuse to take anything in the cipro family...
I also take some herbs for bart and have done some rife machine..None have put me over the edge..
I also did one hyperbaric session and had a reaction to that..might do more but I have some difficulty with the ear pressure thing
LLMD said I had one of the worst blood smears he has ever seen and that was probably why the severe reaction.
Posts: 30 | From Virginia | Registered: Jul 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Yes, I can relate to this. Yes, I feel you on how hard Bart is, and how intolerable intense treatment for it can be.
Yes, I understand trying to live your life with children while grappling with this, no-one can really understand, and so you fake it the best you can.
I got put on high dose Cipro 1 week ago for a UTI- I've been off antibiotics, treating parasites successfully, but have felt Bart creeping back, trying to ignore.
Then the Cipro.
I have no idea what to think how different and substantial this herx from Cipro has been- I've done Levaquin before, etc. etc.
I can go up to 14 days w/ this Cipro, don't know if I can make it, either. Epsom salt baths with 4 cups of salt help.
But I am herxing pretty heavy. NAC, Curcumin, milk thistle... Thank God I have a sleeping pill.
So, I feel you. I really do. About Rifampin - unfortunately for me, stopping and starting it made it become useless (and that only took 2-3 times)
So if you can, take the smallest dose you can every day....JMO. Sending good thoughts---
P.S. Your last name is showing on your slide posted. Not sure you're aware.
-------------------- 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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Have you tried Dr. H's formula for detoxifying? It is:
2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg of oral liposomal glutathione.
70% will feel better in hours
The Alka-Seltzer can be taken up to 4 times in a day when herxing.
On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water.
You may also want to listen Dr. H's webinar (presented yesterday) to see what other detox methods he suggests that you have not yet tried.
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