Topic: Should I take Rifampin or Levaquin for Bartonella?????
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I haven't taken either yet, and I am about to start treating Bartonella (just got finished treating babesia). My LLMD prescribed me Rifampin and Minocycline for Bartonella, but I am second-guessing because I have read about how good Levaquin can be. (also, if I start with Rifampin could I always go to Levaquin later or is that dumb?)
I have seen that Levaquin is what Dr. B and Dr. Singleton recommend first in their published literature. It seems like Rifampin is what you take if you can't tolerate Levaquin.
Anyways, I would like input from people.....did you try one, and it didn't work, so you had to try the other?
Which one is less likely to cause relapse?
My main Bartonella symptoms are NOT pain or burning neuropathy, etc. (though I have had neuropathy as a herx). Instead, my most troubling symptoms (that we ascribe to Bart) are my psychiatric problems and my cognitive issues like difficulty reading, etc. I do have a positive Bart blood test.
Which of the two options has helped you all with the psychiatric/cognitive difficulties?
PS---I should mention that I took Cipro for about 4 months....no tendon issues resulted. I was on a relatively low dose of it, and afterwards I was still not great.
[ 03. November 2008, 02:44 PM: Message edited by: Hoosiers51 ]
Posts: 4590 | From Midwest | Registered: Jun 2008
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Long term.....Rifampin and Zithro worked for me...longterm.
I have had periods where I added Ciproand herxed horrible...in the spine....and base of my brain.
Good Luck....that's what worked for me.
Trout;)
-------------------- 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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Hoosiers51
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Thanks Trout!!!
Had you ever tried Levaquin out of curiousity?
Posts: 4590 | From Midwest | Registered: Jun 2008
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adamm
Unregistered
posted
I'd take Rifampin over Levaquin any day.
Check out fqresearch.org--I've never heard anything like this about Rifampin (or any other antibiotic, for that matter.)
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Hoosiers51
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posted
bump for more input/experiences
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I have taken Rifampin, which was very helpful but got me only so far. After being off of antibiotics for 2 months due to a complaining liver, my LLMD put me on Levaquin. He did so because Rifampin did not touch some of my neuro issues.
I have been on Levaquin two months now. It has helped with neuropathy, decreased twitching, and I would say that after an initial spike in these, my anxiety and depression are better. Take care Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
I think the reason Levaquin may work better for twitching and neuro problems is that it also treats Mycoplasma which is often mistaken for Bart. I believe this BLO organism Dr. B talks about is really a rare Mycoplasma strain that is spreading within the general population.
Just me two cents but let's just say I have done my research.
Posts: 770 | From USA | Registered: Jul 2006
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lymeinhell
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Member # 4622
posted
I took both.
Levaquin for about 4 mos. prior to my Lyme dx for a 'sinus infection' that just wouldn't quit. I ended up with hideous sciatic pain that I now know was tendonitus. (It took many many months to get over it.)
I was still having unexplained raging, tons of neuro symptoms, and my left eye looked like I had been punched it was so swollen. So I'd say it didn't do a dang thing for the Bart. (but did help my sinus infection, albeit slowly).
Shortly thereafter, I then spent 9 months on Rifampin and Flagyl. And kicked the Bart and put the Lyme into 'peaceful coexistence'.
Next week it will be 4 years since I stopped all abx.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Not very helpful but..our collective varied responses to treatments never ceases to amaze me. Wouldn't you give anything for a crystal ball? Back to hiding. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Im taking the Leva Hoosier. Because, I have been on it before and had no problems. The doxy is what worries me. Man, that stuff gives me headaches from H*ll.
Posts: 45 | From western kentucky | Registered: Oct 2008
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Alv
Unregistered
posted
OK ..I think that I am the only one that has chased BART with high dosages.
I would highly recomend RIFAMPIN and MINO just for starting..it will go into the brain slowly .
YOu need to take at least 400mg MINO ( watch out as it is strong but the best of all ) and 600mg rifampin.
Well as mino goes deeper RIFAMPIN will chase the bart and you will suffer.I guaranty you as you will have pain in your head and burning in your skull.The best thing to do for it is TAKE CMS ..all morning every 2 hrs..Than afternoon take the entire dosage 400mg of mino .
It is higher level in blood and reaches the brain DEEPER.Than at night take RIFAMPIN .I even took once 1200 mg rifampin.
Ok I herxed my brains out on it for 9 months .
BUT still could not even get closer to kill whatever bug was in my brain.SO I was tested HIGHER on ART for LEVAQUIN -as the drug of choice.
WATCH out tendonitis.I ruptured my left knee cap tendon ( my fault was painting my house for 8 hrs bending on my knee -should not have done that ).I was in surreal pain every where , but my head was hurting MOST so I did not care.
Now I think I should have been careful and increase the dosage of levaquin VERY SLOWLY.
I had to interupt it 2 tims.DID 1.5 months off and than again 1.5 months ( herxed crazy -in my heart mostly ) stoped , than restarted 1 month later for 2.5 months.( I even tried 750 mg for 3 day).
Finally my frontal LOBE cleared and my eays are wide open..I took it until my body said NO.
Yes My left knee got swollen but was ready to give up on my leg to get my brain beg.I was for 20 months as I was spinning non stop had vibration on my head buzzing , brain swelling , CRAZY feeling etc..
Do not want to remind myself...( is all in the past).But I also added FLAGYL up to 2 weeks on and 3 weeks off during that time( the head will hurt like hell , my jaw my face -had bells palsy ) while the drugs were getting the bugs in the bone.
ALSO took up to 15 HH capsules and ALLICIN up to 10 a day .
So my dosages were crazy....( 3 years ago while doing cleansers....I felt that I had to take CRAZY dosages that will clear my brain and it will come back again in a week. )
That is why the highers dosages worked for me..based on previous eksperience as BEFORE I had no clue I had lyme
OK..ALSO have rubbed oregano oil in my head , up to 1/2 bottle ( super strength and went to sauna-secret mix it with olive oil and it would not burn)
Just careful watch out YOU WILHERX crazy.I had to make sure all the time that I was on HIGHER DETOX binders /big time to keep up with neruotoxins...
LEVAQUIN stoped the twitches that rifampin slowed down ..only .
I have tons of oil herbs every kind.I mix them and rub them every where in my skin , head , ears , jaw , neck , chest and legs...
AGAIN sometimes I go for my entire body once I am over a BIG herx, BUT that is ME ...as I see that people are more afraid of pain and give up .NOT ME.I could not live like that as I was near death and I had no choice.So if I was in such pain wihtout knowing what caused it...I accepted the pain to kill THEM FOR GOOD!!
I guess you need to be strong to really handle them also detox detox and detox.DO not forget.The herxes in the brain from BART ARE THE WORST OF ALL.I had all coinfections...BART IS WORST.I had bart for over 20 years -before lyme.
Sorry it is too long.WATCH out for the tendonitis on levaquin as I am stil ldealing with my left knee and I hope that one day will recover.If not it was my choice as I wanted to get over the severe brain swelling in my head cause of bart.
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posted
I guess the big question is: How are you now? Is the bart completely gone?
Posts: 770 | From USA | Registered: Jul 2006
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Alv
Unregistered
posted
Let say from level 1-10 my bart symtoms are at level 2 .
It is hard to cathc it in exstremeties..I never took IV only orals in higher dosages...
YES I AM WAY BETTER and could never think I WOULD MAKE it alive EVER AGAIN last year.I WAS CHOCKING TO DEATH shacking and having seisures.
Titches are 99% gone.
THE only thing that bothers me is the left knee.Just did an MRI to find out how much the damage is done.will see the dr this week and get the final answer.But I walk , I am just careful to not hurt it any further. For the first time in the last 13 years my hands do not hurt and my wrist do not hurt.
I am aiming to get way better...PEOPLE do not beilive that I AM BACK ...OH by the way , I lost 12 mollars due to the infection thanks to BART and had a 5 hrs surgery in my mouth to remove the infection before I knew IT WAS LYME and company!!!
Trying to recover the severe damage that the inflamation that all that caused.From 120 pounds that I was last year I am back on eating everything and 170 pounds.NOW I am trying to watch what I eat.But finally I am enjoying food.
YEs I drive get out ..and do a lot of things.BUt recoving takes time.DEALING WITH YEAST AND FUNGUS issues mostly !!!
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks Alv.
When you said Levaquin gave you a herx in your heart, what did that feel like?
I have had really fast and hard pounding in my chest...not sure if that could be Bart-related.
Anyways, thanks for the input.
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Alv
Unregistered
posted
I could not breath ( and I am telling you it was not babs as I had beenthrough babs herx and tachocardia 1 year before that killing babs) .
It was like a squising type of think and could not breath .Was afraid to breath as the pain would go even worst and hurt even more.I STOPED EVERY MOVEMENT -stayed still -called my llmd after and took HIGH dosages of CO q10.I knew that I did not have hypercoagulation as I have been on HIGH dosages of natokinase , serrapeptase and WOBENZYME 30 a day.
THE PAIN was SHARP RIGHT IN THE HEART.Same kind of pain that was caused in my left knee before I ruptured.I bet that the rupture happens as that was the KNeee that that had their colonis mostly build up and BART loves the cartilage.
So I stayed still from 10 PM to 8 AM in the morning and did not moved at all until it passed.
I know that was a HERX as in the morning I felt a sharp pain in my shoulder right behind my heart.THAN at 8 pm I took the dosage of LEvaquin -SO i WAS CHASING WHAT i WAS FEELING.
At 10 pm the sharp pain in my shoulder went deeper.I was thinking if I am having a rupture...but no .WAS A HERX.Killing the colonis around my heart valvule.
It passed ( I WAS brave though as my family was scare to death ).I was not.In no way I wanted to GO to ER.Been there before and they tortured me by waiting for hrs.They did not beilive me anyway 1 year ago when herxed from babs.That time my blood was hypercoagulated and was even worst.
2 Days ago I had done blood test so I knew that I had no problem of that nature.
Ok..squizing tightness and feeling like you are gona pass out as no blood and no oksigen was going in my brain ( anxiety ) .CAlmed my self...and let it go .IT WENT AWAY again after 8 hrs at least.I tried to sleep to get over it.
If it was hypercoagulation that I would wake up chocking , numb and could not breath and could feel my blood clott moving from my right leg to my liver to my left ARM!!NOt jocking !!!MY BLOOD WAS BLACK and thick and ER could not draw my blood and was denying I had lyme...and would not even touch me!!!
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posted
I would also recommend you start with a rifampin doxy/mino combo for a month or 2 then follow up with levaquin for 2 or 3 months.
I started with doxy rifampin for a month and it sent my anxiety and temper through the roof for 2 weeks or so and then died down.
I then followed up with levaquin and have been on that for 15 weeks or so. I think I will cycle back to the rifampin again as I feel the levaquin has lost its bite a bit.
Levaquin is also good for intracellular lyme too so that could be another reason I herx on it.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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