posted
can someone please tell me what is the best abx for very high numbers on bartonella. My daughter has tested positive for this since 2006. Her then lyme doctor had her on tetra for three years and said it would take care of it. We have changed to a new lyme doctor this past year and her igg numbers were extremely high and she put her on rifampin but she was nuts on this med. Any suggestions? Rifampin made her moody, anxious, pms'y, couldn't handle it so her lyme doctor took her off for now.
Posts: 256 | From Boston, mass | Registered: Jan 2008
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posted
My Daughter and Sister both have Bartonella and are on doxy and levaquin, alot of people have great improvement on this combo, but everyone is different, my daughter did 6 months of Rifampin and we really didn't see any improvement, but I would say that by the way your daughter acted on Rifampin she was herxing so maybe it was hitting it, who is her current Dr
Posts: 200 | From Massachusetts | Registered: Apr 2007
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nefferdun
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posted
Levaquin is the most powerful killer of bart but it has some very serious side effects which you should be aware of before you try it. Rifampin is also very good althoug it takes longer. When you treat bartonella you have a lot of emotional herxing. Hang in there as it will pass, usually in a month or so. Most people experience the same depression and anxiety as well as anger verging on rage when treating bartonella. But after a while you begin to feel much happier and more alive, more in touch with yourself and those around you.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tick battler
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posted
How old is your daughter? Young children cannot take Levaquin from what I understand.
My young children have taken either rifampin or bactrim for bart. Our LLMD said that sometimes one works and the other does not. I have seen this firsthand.
One of my 5 year old twin boys was on bactrim for 9 months and his titers (and anger/rages) didn't change. As soon as he was switched to rifampin for a couple of months, his titers went down quickly (within 3 months) and he became happy again.
For my 3 year old daughter, we only used bactrim and her titers have slowly gone down over a 6 month period. They are normal now in both children, but as soon as we stop the meds, their headaches, muscle pains and head buzzing return, so we are not over it yet. It can take 6-12 months from what I understand from my LLMD.
I agree that your daughter may be having a herx on Rifampin. Did it change her titers? How long did she take it? One of my boys became crazy/manic on it as well and we had to stop after 3.5 months. My other boy got worse with anger and rages for a month and then got better on the rifampin.
Hope this helps,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Rumigirl
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posted
LEVAQUIN!!! But be careful of tendon issues, and load up on magnesium for weeks beforehand, and during tx (but away from the Levaquin).
And LOTS of detox for the herxing!!
Posts: 3770 | From around | Registered: Mar 2008
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Amanda
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posted
You can alswo use azithromyacin to treat Bart.
The emotional stuff is also a side effect of Riphampin for some poeple. My old pharmacist used to work in a clinic where they treated losts of TB. He told me that some people get crazy anxiety and emotions and insomnia. I quite taking riphampin after 5 days because of this.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
From what I understand (and experienced), Rifampin can cause an increase in SHBG, thus really messing with hormones in some folks. I'm not sure that all the anxiety and PMS associated with the drug is necessarily a herx; it also can be a side effect of the drug, from what I've read.
I've been on Bactrim for 8 months and, though hard to say, it seems to be hitting Bart somewhat, at least, as my Bart symptoms aren't too prominent right now.
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
My LLMD started me on ceftin and biaxin to treat the lyme. I did not see any improvement, so after 2.5 months, he swithced me to zithromax and rifampin to treat the bart, as my symptoms are all neuro...no joint. I have been on that combo for 3 weeks and no improvement just yet, but...I am starting to have sore feet, so I guess that bart symptom is coming out!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Tricky Tickey
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posted
My LLMD said that Doxy would take care of the Bartonella.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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My old LLMD initially told me Doryx treats bartonella. Over a year later, she told me it does not.
My new LLMD advised that it does not.
Just something to consider. I was on Doryx and believe that I flared due lack of bartonella treatment.
I know that there are different opinions out there, but just wanted to share what I was told.
I hope you're well!
I am currently on Ceftin for lyme and have to start Bactrim DS for the bartonella. I've been stalling on this one because I'm scared to death of having a severe reaction.
Anyone else have Bactrim success?
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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janet thomas
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There are two antibiotics that have been found to be most useful for treating Bartonella/BLO. My choice of these two antibiotics depends on two issues: (1) the extent to which the central nervous system (CNS) is affected and (2) the presence of co-infections other than Bartonella/BLO.
Levofloxacin (Levaquin)
This antibiotic is generally considered to be the antibiotic of choice for the treatment of Bartonella/BLO. Levaquin is a member of the family of antibiotics known as fluoroquinolones, which also includes ciprofloxacin (Cipro). All the fluoroquinolones seem to have activity against Bartonella/BLO, but Levaquin seems to be the most effective. The dosage is 250-500 mg once a day. It is best to take Levaquin on an empty stomach (or with minimal food if you need to eat something due to gastrointestinal side effects). Also, it is important not to take minerals like calcium, zinc, iron, and magnesium within several hours of the dose of Levaquin, because these minerals will bind Levaquin and render it less effective. I advise that patients take levofloxacin early in the morning, or it can be taken late in the evening, but not at bedtime. Except for the tetracycline antibiotic group, the fluoroquinolones are not generally used in combination with other antibiotics. Usually the course of treatment for Bartonella/BLO is one to three months, but occasionally it may take much longer.
Precautions: Levaquin is usually very well tolerated. The major adverse reaction that may occur with use of this medication is tendonitis (inflammation of the tendons). This complication is not common, but when it occurs, the medication must be stopped for a few days to allow symptoms to resolve. It can then be restarted in a few days at a lower dose, but if the tendonitis recurs, the medication should be stopped. The mechanism for tendonitis is not clearly known, but magnesium deficiency may The play a role in some patients. For this reason, I recommend that Bartonella/BLO patients ideally take 600-1,000 mg of magnesium for two weeks before beginning Levaquin therapy. Once Levaquin is begun, the patient should continue the magnesium, being careful to take it three (or more) hours before or after the dose of Levaquin.
Rifampin
Rifampin is a very old antibiotic that for many years has been used for the treatment of chronic infections such as tuberculosis. It is very effective against Bartonella/BLO. In particular, it is very useful for the neurological and psychiatric manifestations of Bartonella/BLO--severe anxiety and mood swings, panic, seizure-like episodes, memory loss, ``spaciness,'' confusion, disorientation episodes, and many other symptoms. Expect a herx-like reaction during the first week or so; then significant progress often occurs during the second or third week on rifampin.
It is best used in combination with certain other antibiotics. Frequently, those combinations include rifampin with doxycycline or rifampin with clarithromycin. The combination of rifampin with doxycycline is especially helpful when a patient with Bartonella/BLO is also infected with either Ehrlichia or Lyme. The dosage of rifampin is 300 mg per day for the first week; increase to 600 mg once a day after the first week. It is advisable to use rifampin in the evening (not at bedtime) on an empty stomach, three hours or more after a meal. It may be used in the morning an hour before breakfast also.
Rifabutin is a medication in the same family as rifampin and is reportedly very effective against Bartonella also. Apparently, it can be combined effectively with azithromycin. I do not have enough experience with its use to recommend it at this time.
Precautions: Rifampin is usually very well tolerated. It will always turn a patient's urine orange. It may cause headaches and sleepiness. Liver function and blood counts should be monitored at regular intervals while using rifampin. The greatest concern about rifampin is the potential for interactions with other medications. Rifampin speeds the metabolism of certain medications, resulting in an increased breakdown of the other medications. Clinically, this drug-interaction issue often becomes a problem when certain pain medications are being used, and often a patient will require higher doses of pain medications while on rifampin.
-------------------- 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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Jane2904
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posted
Thanks, anymore?
Already took Rifampin and Dr. will not give her Levaquin.
She tried Cipro, but too many side effects.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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tick battler
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posted
Try Cumanda from Nutramedix. I bet it will bring out the same behavior issues (herx) as Rifampin. But at least you can easily control the dose and ramp up slowly drop by drop. It is helping bart in my kids, which was still there (but much better) even after Rifampin.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I am currently on minocycline, azithromycin, plaquenil, and bactrim.
If I'm remembering correctly, I believe the bactrim is for the BLO with help from the azith.
Posts: 217 | From Earth | Registered: Feb 2010
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17hens
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posted
I'm taking Rifampin & Azith. First 3 weeks were terrible w/ emotions, crying, anxiety. Then it all got better. Been on it for 4 months and symptoms are disappearing.
My 14 yr. old daughter was on Rifampin & Azith and her stomach couldn't handle it. One of her main symptoms is GERD so this combo was too much.
Now she's on Bactrim & Biaxin and things are happening. Small flares so I know it's helping.
I believe Dr. B. says no levaquin for under 18. My husband took it, hard drug.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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