lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Ok this is my last question on this, I haven't had huge response, there must be some out there that have tried Doxy or Rifampin and prefer one over the other. I need to choose this week.
After a lot of research I must say I have not heard one good thing about Rifampin! I have searched and read posts and cannnot find any who has said it made a difference, except made them feel much worse or they had to quit. Everyone it seems to say it is an awful drug.
Please tell your experiences good, bad and the ugly with either drug.
Which would you choose?
On the other hand Doxy seems to have helped people especially when taken with Biaxin.
The more I read about patient experiences with Rifampin it sounds like a nightmare! Why do LLMD's prescribe it at all when there are other choices? It sounds like hell! Does anyone know why this is prescribed when it seems few can even tolerate it?
Doxy kills everything from LD to HGE/HME and Bart. My LLMD made it clear Rifampin is not a lyme killer only a Bart and Ehrilichia killer.
Has anyone at all had a good experience ever on Rifampin or get well because of it?
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I do have one friend who has similar central nervous system symptoms to mine (she occasionally posts here, maybe she will chime in). She went through a tough time on Rifampin yet when it was done, she felt she had made a real turnaround on Bartonella.
She remains my inspiration as I struggle on Rifampin.
One of my LLMDs just added Doxy to my regimen to try to boost the Rifampin because I can't tolerate a full dose of Rifampin.
Doxy was my first Lyme medication 3 years ago and I breezed through it. Now, I am having bad stomach aches on it, despite giving in and eating some food with it. Obviously three years of antibiotics has made my GI tract a lot more sensitive.
So before this, I would have raved about Doxy. Now I'm not as gung-ho.
However, I will say Doxy helped a lot with my Lyme, and probably was helping keep the Bart symptoms down for several months. However, the Doxy alone certainly didn't knock out my Bart.
Do you think the Doxy alone would do it? I keep hearing of combos like Doxy/Rifampin/Zith or doing the Levaquin or Cipro.
I certainly understand your hesitation about Rifampin. It's hard on the liver, too.
By the way, your website is great. I've only read part of it but look forward to going back and reading the rest.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Its helping me a lot but the herxes are brutal.
Stiffness, fatigue, pain, lymph swelling clearing up. Immune system working much better (improved resistance and recovery). Strength and stamina improving as well. Memory and thinking is better. Emotions are improved and more stable. Buzzing feeling in my back is better. Vision has improved.
I improved with doxy as well but not as much. I didn't herx on the doxy.
Best wishes
Posts: 925 | From California | Registered: Sep 2004
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I lasted 3 days on Rifampin-my calves hurt too much. Maybe I'll go back to it later, much later or maybe never.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am currently on rifampin for bart....about 25 days in.
Started with bladder spasms about 5 days in...
They are tolerable and have improved.
Am having some issues with foot cramps and calf cramps especially at night, but not
Sure if this is rifampin or something else.
I can't do doxy during the summer..
It causes too much photo sensitivity for me.
Sooooooo, it's rifampin or nothing at this point.
I chose the rifampin.
Good luck.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I just stopped rifampin because of shear exhaustion and dizzyness and brain fog and mental forgetfulness on rifampin..I started to get cold sores and then said I better quit now as I think that the rifampin knocked down the bart in the tissues..I dont think that continuing to the point of being icompacitated is good...by the way the zithromax and doxy knocked the bartonella down fast as per dr fry test..before and after 1 month..I would try now a break and then zithromax and mepron and or doxy...hope that helps.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Glad to hear all the positives from dolphinlady.
To really hit bart - I would think you need the levaquin or the rifampin combined with other abx.
After 7 years of headaches, my sons have lessened on the rifampin/doxy/and zith.
Other symptoms have intensified.
His llmd has him take doxy with food. I think he only takes the zith on the weekends.
I used levaquin/ceftin for bart and had success with that - no tendon problems.
I think it all depends on which infection you are targeting. Good luck.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I'd vote for Rifamp for any chronic Lymie
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
For Ehrlichiosis there are only two choices- Doxy or Rifampin!!!!!!!!!!!! And if someone is sensitive to Doxy sometimes there is no choice-
Personally I would choose Doxy because it has action against many bugs- more than I know to be true re Rifampin-
I don't know what would be best for you- your doctor should!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Believe it or not my Bart test is negative, according to recent re-test. 10 months ago it was very slightly positive, just barely. I have been on Biaxin/Amoxi for about 9 months. My LLMD said Biaxin is able to kill Bart. But my HGE (ehrilichosis)lingers on. My main pain is nerve pain all over. Another LLMD suggested Doxy/Biaxin (still a macrolide, I can't tolerate Zith) and he said it will kill the HGE and if I have any Bart, that as well. I hate this ....I hate switching. I am content on my current meds, I wish they'd let me be for a few more months. But one LLMD keeps pushing the Rifampin, another pushes the Biaxin/Doxy (both totally disagree with the other).
My advice - don't ever get a second opinion from another LLMD not unless you want to be completely confused!
Thanks for great response - it seems choice is split down the middle.
Jill - thanks for compliments on the website, very much appreciated, just doing all I can to get the word out on LD. Public Health Alert printed my story in the June issue http://www.publichealthalert.org/JUN-Page-1.html starting on page 6 and now because of that story a local reporter is currently working on an LD story with my guidance/advice. He just can't understand why MD's don't "understand" LD. All I want is for the public and MD's to get educated - this is my goal - forever, my misery has become my ministry.
posted
Rifampin was okay and I improved. Doxy was good and I had strong herx at the beginning.
By far the best results that I had overall with HGE & HGM and muscle pain was with minocycline. At first I thought I was losing my mind and had been hit by a truck, but when that subsided, I was doing better that I had been in quit some time.
It also took away pain that was incredible that had come after taking mepron, ketek, levaquin earlier - I had been told that was probably lyme arthritis but I still don't have it.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
you said ***My LLMD made it clear Rifampin is not a lyme killer only a Bart and Ehrilichia killer.***
Exactly. You can't compare apples to oranges. The two are used for different things.
I took Rifampin for 5 days. Had KILLER headache every single day. Went off after the 5th day and the KILLER HEADACHE continued 24/7 for 3 weeks~!
My LLMD had to prescribe another abx on day 6 to reduce the BRAIN SWELLING. I will never take it again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
OMG Lymetoo that sounds horrible! Not to mention I have read that it has created dizziness in people that didn't go away easily or for a very long time !
I would only be on Rifampin alone, if I follow my one LLMD's option. I do not like this because I would not be killing the LD. That is werid.
My gut feeling is that the majority of my symptoms are LD related not co-infections related. But I know the HGE is hanging me up from moving forward. That is why I am leaning towards the Doxy/Biaxin...especially now with all this feedback on Rifampin.
Why does any LLMD prescribe Rifampin? Not one person has reported it being the best plan of treatment!
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hmmm.....hubby is on IV Primaxin. What would that be targeting? Anyone know?
Posts: 1366 | From Southeast | Registered: Sep 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again,
I've been reading some posts lately and there have been some Lymenetters who did well on Biaxin for Bartonella. This interests me because Bartonella is a big issue for me and I'm running out of Bart meds. So maybe the Biaxin has hit your Bart.
Here's another thought. You could ask your LLMD if you could ramp up on the Rifampin - slowly. I'm very sensitive to meds in general, perhaps you are not. So I have to start out slowly on all meds.
But with Rifampin, my LLMD was so concerned about my reaction, he had me start at a less-than-pediatric dose.
Thank goodness he did because the first three weeks or so, I was so dizzy and felt like I was on a rocking boat that I had to hold on to thing.
But my body has been acclimating as long as I go up slowly and don't go over a certain dose (I can't get to a full dose at all).
I know there is a school of thought that Bart can become antibiotic resistant if you do this, so talk to your LLMD - don't follow my advice without a professional opinion.
You and I are both in California, so perhaps we even have the same LLMD, I'm not sure.
That is a little odd that he is not recommending a LD medication in addition to Rifampin. Is he concerned that the Rifampin would be too hard on your liver? That's usually the issue, or that Rifampin interacts with so many other medications. By the way, you could do Doxy and Rifampin.
Let us know what you decide!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I HAVE heard some good reports on Rifampin.
I took a low dosage...not sure how much it was...That was several years ago.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I took 600mg of Rifampin daily and I felt I improved immediately on ear-ringing and sole pains.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
I've been on Doxy now for about 9 months. It has worked very well for me. The only time I have had problems is when I haven't eaten before taking the meds. This is really important. It has allowed me to stay pretty stable. Good luck.
Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
rifampin isn't usually prescribed by itself. It has a very short half life and stuff builds resistance to it. It's not as effective by itself and if you end up not tolerating it after a while or something builds resistance to it then if you need it later you don't have that option.
Personally I'd choose the doxy IF my only choice was either or. I found it much harder to tolerate at first, but it will hold most things at bay by itself.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Wow, this is making me laugh because this is split about 50/50 now.
Jill - yes my Bart (test wise) is gone since being on Biaxin. I am in Northern Cal and see Dr. S in San Fran, also I get second opinions from another LLMD in another city because he is more compassionate to my particular (nerve) pain issue and is very readily available if I need him etc. unlike the other LLMD. Confuses the issue though, too many "cooks in the kitchen" so to speak. I can be somewhat sensitive to meds, but I think my fear is worse than anything else and fears of nerve pain, herxes. Just at a loss over this.
I have heard many times that Rifampin is NOT prescribed alone because of its short half life and the bacteria quickly building resistance to it, but Dr. S will not prescribe anything else with it at all, he said "too hard on the liver".
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