I'm suspecting this is part of the puzzle for me. I tested negative but my LLMD still suspects it. We haven't discussed treatment options yet but I'm wondering if someone could tell me some examples of what treatment is used for Bart and typical duration. Thanks!
Posted by Leelee (Member # 19112) on :
I get so confused about which abx treats which infection. I look forward to reading the replies to this question.
I tested positive for Bartonella with Fry labs.
Posted by MY3BOYS (Member # 17830) on :
was hoping for replies on this!! i am 1 month into bart tx myself. there has been a big diff. for me since tx it. am finishing my 4mo. babs tx this mo. as well
i did 1 month of cipro early on in tx last sept /oct and last LLMD appt discussed symptoms possibly bart..
on cipro now. looks like levaquin is usually abt of choice. same LLMD gave hubby levaquin for bart (his labs pos for it,mine were neg. )
so, im confused as well
Posted by laura j (Member # 14257) on :
I recently had to switch back to my old LLMD b/c my new LLMD was forced to stop treating Lyme patients. The new one put me on Erythromycin as well as a bunch of other things. When I went back to my old LLMD she questioned the erythromycin saying it's not a great drug for Lyme.
Interestingly, I feel a little better since starting the erythromycin and I read that is effective against bart. The new LLMD suspected Bart despite negative tests due to a purplish mark on my back (round, not stretch mark-like) and a bunch of other stuff. I don't believe she chose the erythromycin b/c of the bart though.
If erythromycin isn't the drug of choice though for bart, I'm worried that I'll slide backward again when I stop it if not on long enough. The plan is to switch back biaxin instead of the erythromycin once I finish what is left in about a month.
Posted by Imaginit (Member # 20399) on :
I was just recently diagnosed and had a major Bart rash on my tummy. After only 10 days on minocycline the rash has faded significantly.
Posted by radfaraf (Member # 11909) on :
Kinda hard to say best treatment when everyone responds differently. Biaxin alone makes me dramaticly better within a very short time of starting like 2-3 days is all it takes for me to see it.
It's been 6 weeks so far, two times I stopped for a short time, once because it was making me not sleep at all and once for diarrhea. Both times I returned to as if I never started treatment fairly quickly. Then started again and dramaticly better.
I got the insomnia under control sorta, sleeping some, but at least not none like I was. The diarrhea I think I have stopped by switching to the extended release version. Though it hasn't been that long on it to be certain that it has really helped with that.
I suspect zithromax would probably have the same dramatic results for me, but it causes horrible GI pain and constipation. Funny that biaxin would be the opposite.
Going to add Rifampin soon.
Posted by laura j (Member # 14257) on :
Is the Rifampin for Bart also?
Posted by tickbattler (Member # 14873) on :
My husband saw improvement on levaquin but after about 4 months needed to stop due to joint and tendon aches.
One of my boys has seen HUGE improvement on rifampin for bart. His muscle pains are gone and his rages and growling and anger have almost disappeared after 10 weeks on it. He tested positive for bart hensalea and bart quintana.
He had taken bactrim for bart for 8 months before this and it helped with his mucle pains then but a couple of months later they appeared again with the psych symptoms.
My theory is that the bactrim got rid of one strain and the rifampin is getting rid of the other.
tickbattler
Posted by Chronic Triathlete (Member # 15245) on :
I take Rifampin for Bart. I think it's best when paired with something else like Zith (which I'm also on).
Timeline... seems to depend on the patient's response. I've been on it about a month and it's driving all my neuro symptoms up to new levels. I assume it's a herx, but can't really tell.
/CT
Posted by 22dreams (Member # 17846) on :
My sister took: levaquin
I was just prescribed: Rifampin
Instead of Septra/Bactrim-- because I have an egg sensitivity.
I really have had the sneaking suspicion that a high percentage of my CNS manifestations has to do with Bart. Doctor seemed to agree.
If I get nowhere with Rifampin, I'll have to inquire about levaquin.
Of course, like Lauraj, I have to switch doctors come September, so I don't know that this Bar tx will even be possible to continue.
Posted by asus (Member # 13881) on :
My Dr started me on Zithromax and I will probably be adding rifampin soon. I have taken Zith before (prior to testing for Bart) and it caused some minor improvements. I guess rifampin is supposedly what really hits bart. We'll see...
Posted by laura j (Member # 14257) on :
Does Rifampin hit anything else? Is that oral or IV?
Posted by bejoy (Member # 11129) on :
I used a Bartonella series remedy homeopathic from Deseret Biologicals. It was extremely effective.
Posted by massman (Member # 18116) on :
There are some excellent herbals for specific parasites. VRM4 combined with WO from Systemic Formulas.
Posted by SoSublyme (Member # 15185) on :
I had the most improvement in my treatment so far while on Rifampin/Bactrim combo. I recently had to replace the Bactrim with Biaxin because of an allergic reaction.
So I hope to get back those improvements soon.
Posted by winterbug101 (Member # 19422) on :
Rifimpan is taken orally. I'm told you can not be on mepron because it will eliminate the effects of the drugs. Rifimpan also makes your urine turn red & or your contacts red. I heard it is effective.
Don't give up everyone says those that give up don't recover.
Posted by Deb133 (Member # 18544) on :
My daughter is on Rifampin and Azithromycin for Bartonella. She has been on it for about 4 months. Very effective for her.
Posted by TF (Member # 14183) on :
Here's what Dr. Burrascano recommends for bartonella, or bartonella-like organism (BLO), as it is called since the lyme-associated bart is not the regular bartonella:
The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO.
Treatment consists of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses.
Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay.
Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin. A very recent article suggests that prior use of quinine-like drugs including atovaquone (Mepron, Malarone) may render Levaquin less effective. Therefore, in a co-infected patient, treat the BLO before you address Babesia species.
Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion- this is temporary (clears in a few days) and may be relieved by lowering the dose. There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur. It has been suggested that loading the patient with magnesium may prevent this problem, and if the tendons do become affected, parenteral high dose vitamin C (plus parenteral magnesium) may afford rapid relief.
Unfortunately, levofloxacin and drugs in this family cannot be given to those under the age of 18, so other alternatives, such as azithromycin, are used in children.
Posted by laura j (Member # 14257) on :
TF, didn't have a chance to read all that yet but will.
Here's a question for anyone that knows. Does Bart by any chance flare every 2 wks. with sore throat and headache? And, could I have given it to my family?
2 wks. ago I started getting sick with a sore throat and headache and a lot of congestion w/terrible cough. It finally gradually got better over 2 wks. and I felt completely better 2 days ago. Now starting last night and today, exact same headache is back along with the funny sick taste in my mouth and sore throat.
After I first got it 2 wks. ago my daughter got sick 4 days later and 4 days after that my husband got it. They are still fighting it.
Posted by nefferdun (Member # 20157) on :
I used levaquin for a month and it cleared up most of the bart but left me with tendinitis so bad I don't know if I will ever get over it. It has been three months of pain. I switched to refampin which I could not tolerate. Everything I tried after levaquin left me in more pain and/or with vertigo so bad I could not stand - so I am off abx. I am using Zhang's HH capsules for bartonella. I take 3 capsules 4 times a day. That is a lot more the recommended but I read it takes a very high dose of houtuynia to kill bart. In fact it takes a much higher dose of any herb to be effective against lyme or any of the co infections.
Posted by asus (Member # 13881) on :
How long on Rifampin to tell if its going to work? And do you have to take it with Zithromax?
Posted by Rambler (Member # 18794) on :
I was told a 4 month run of Rifampin along with Biaxin should knock out Bart. High doses. I was also told that it doesn't hide like lyme does and once you treat it, that's it. I'm going with that plan. I won't make it through any more than that, anyway. My poor bod really needs a break.
I am a little over a month into it and I'm as sick as I have ever been. The whole wang-dang-doodle! My liver seems to be tolerating it well enough though, according to my doc who encourages me to keep going.
However, just because my lab work looks OK, that doesn't mean I'm "fine". I honestly don't think my doc has a clue as to what I am up against.
Lyme and co have been in my body for a long, long time. Has this doc just not dealt with long term symptomology??? I mean, I just can't friggen' believe that when I talk about my pain and fatigue and Bizzare sensory stuff, I get a blank stare. I swear to god!
I'm dying in pain, can't do opiates at all, and this doc gives me valium. The last ditch effort for opiates was ultram, which triggered one of the worst migraines I've had in months.
So, I can't or won't pop valium and besides, it doesn't do much for the swelling and stiffness...
I'm in and have been in a bit of a bind dealing with my pain. Ibu in large doses can help with certain aspects- tooth pain, hormonal cramps gone berzerk, but it does nothing for the rest of it.
Do we all have Fibro from being infected with lyme? I mean what the hell??
I was so rudely blown off by a neurologist last week, that I just could not even believe it. I was flabber-gasted. I've heard y'all mention such treatment, but now I know first hand. WOW. What an additude! I want to argue and send him a letter, but what's the point?? His mind was so closed. I need to just shake it off and keep moving.
After a year of beating the sage brush, I think I've finally got a good crew on board. I don't know what to do about the lousy lyme doc, but my body needs a break from the antibiotics, anyway. I may revisit the neurology route, but for now I'm focusing on sleep issues and a mood gone so completely haywire, I just sit back and hold on for dear life...
What do I think about Rifampin and Biaxin? All I can tell you is get ready for the ride of your life. Make sure you are in a safe place. Strange things can happen.
Posted by kellyb2411 (Member # 15467) on :
I took rifampicin for 6 months. Recently went off it and within 2 weeks had a whole stack of symptoms return. I have recently gone back on it and within a couple of weeks was back to normal. I am looking in to levaquin now as I don't think the rifampicin is strong enough to eliminate it, just dull it down.
I was on 600mg/day combined with tinidazole and biaxin.
Posted by asus (Member # 13881) on :
kellyb2411 and/or Deb133 did you or your daughter have the neurological depersonalization/detachment that comes along with bart? Thats one of my worst symptoms. I would do almost anything to get rid of it. I hope the rifampin works.
Posted by NMN (Member # 11007) on :
Asus, I had that symptom really bad for months back on 07 when I started this whole thing. I only did one antibiotic at a time in standard doses. I pretty much knocked this symptom out with 2 months of cipro.
I followed it up with doxy and I seemed to keep getting better. 4 months on and that symptom started to return along with the rest.
This is when I got to a ILADS LLMD and got back on a quinalone in the form of levaquin. Again this symptom lifted but only after 6 weeks of hard herxing.
I have been under treating bart BIG TIME. levaquin works well but does not erradicate it. It hangs around deep in the CNS and brain and eyes with me.
I have been using everything at standard doses and this has been a mistake. I just got up to 200mg of mino twice daily and added Rifampin 600 mg twice.
The difference in 24 hours is like night and day. Energy is back. Head is clearer. Mood is great.
Its not like a bad flare but more like a therapeutic throbbing that you know is a good thing. My neck is really stiff.
I am going to continue with this dosage for a few days and see how I go. The best treatment in my opinion FOR ME is: Mino + rif(high dosees) and switching out the rifampin possibly every other month for levaquin 750 mg.
I have not figured out the best rotation time-frame so any opinions from people familiar with the lifecycle of Bart would be much appreciated.
I will talk it out with my LLMD and see what he thinks.
I may add HH capsules in a few weeks but from experience herbs are useless against these diseases as a solo treatment.
Happy hunting Posted by kellyb2411 (Member # 15467) on :
Asus,
I've had a little bit of that and it has lifted, but my worst symptoms have been anxiety, eye symptoms and the foot pain.
Kelly
Posted by asus (Member # 13881) on :
Bart life cycle heh... well supposedly it hangs out in the sides of the blood vessels causing inflamation and then every once in a while it gets bloodbourne. At least thats what I read, somewhere, on the internets Well I talk to my doc tomorrow AM and I suspect hes gonna put me on rifampin with zithromax 500. Hope I don't herx too bad..
Any Bart people have circles around there eyes..? mine look like I haven't slept, but I sleep all the time on account of fatigue.
Posted by laura j (Member # 14257) on :
Any of you with Bart tend to have elevated bilirubin? Mine is always slightly elevated any from time to time my eyes seem yellowish. This started happening before I was diagnosed and before starting any meds so I don't think it's med related.
Posted by blinkie (Member # 14470) on :
Don't know if this applies but my dog has elevated bilirubin and she has a positive bart test. I suspect these TBD's act the same in animals and humans.
I started treating bart with septra/rifampin and one month in the bones in my feet were killing me and my heart began to freak out badly.
Anyone have a bart herx cause heart issues?
Posted by NMN (Member # 11007) on :
Hi Tosho,
Yes 600mg AM and 600 mg PM. I take 200 mg of mino same set up. I have felt like I have come out of a coma the last 2 days. I have energy and I feel human again. I think this combined with the HBOT is making a massive difference.
Bart is really entrenched in the brain and eyes. I did a month of Bactrim+rifampin in January and it did nothing. It really has to be Mino or Doxy.
Posted by kim812 (Member # 17644) on :
Just saw my LLMD today and am going to start on Rifampin 300mg twice daily and Mino 100mg twice daily.
![[Smile]](smile.gif)
![[Razz]](tongue.gif)
Well I talk to my doc tomorrow AM and I suspect hes gonna put me on rifampin with zithromax 500. Hope I don't herx too bad..