posted
The new word on Bart is that all the current treatments don't work.
Since Bart is thought to give some of the worst symptoms of all the coinfections, I think many of us would like to know if there is anyone out there who has recovered from Bart and what worked.
Many in the past said Levaquin seemed to work, and this is what Dr B recommends in his video presentation on the ILADS site.
Any of you take Levaquin and relapse later? How about the alternative Rifampin?
If you had a positive test for Bart, you were treated for Bart, then tested negative and the symptoms have not come back please share your story?
One of the issues is that there is a BOL (Bartenella Like Organism) that does not show a positive test.
So, if you had all the Bart symptoms but tested negative, were treated for Bart and the symptoms went away for good, share that also.
If you had failures share that also, and what failed.
Was there another survey on here and I missed it?
If so, let me know and we can pull that forward.
[ 12. June 2008, 10:21 AM: Message edited by: Momfromtexas ]
Posts: 349 | From usa | Registered: Oct 2007
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adamm
Unregistered
posted
What--has it just evolved to be resistant to
posted
Bart was easy for me .... 12 weeks levaquin followed up by 6 weeks of Rifampin. It hasn't come back.
I tested negative and symptoms resolved with treatment.
Now my babs .... that's a whole different story .... 17 months and still treating.
I think it's just different for everyone.
I also think it depends when you got it .... I believe I contracted Lyme/bart 35 years ago but only got babs 5 years ago. So my bart could have been an older strain that was easier to fight whereas I got newly exposed to Lyme and babs .... just a theory because I know others have a tough time with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
3 1/2 yrs off antibiotics now - Bart is definitely gone. I was treated with Rifampin.
-------------------- 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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had lyme, babs, and bart.
I tested positive for bart through IgeneX. I took Levaquin and then Bactim DS (double strength) for a total of about 7 months.
I have been off meds for over 3 years and symptom-free, so I'd say it cured me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Rifampin combo for 9 months, now Levaquin combo for two so far.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Levaquin has done a real good job so far after 4 months. I told my LLMD I thought it was there for the taking and I would like to switch back to a rifampin combo to finish it off.
Oh and I did a doxy rifampin combo for a month prior to the levaquin. This sent my anxiety and rage through the roof and it was really rough. Rifampin scares me which is all the more reason to do it.
I have asked for something else other than doxy with the rifampin this time. I will also be switching to IV for the lyme.
I will chime back in and tell you how it goes.
Bart has been the worst. It really has.
-------------------- 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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posted
I treated bart with Cipro for 2 months but had to stop (tendon problems) -- but it took the edge off. Could not resume treatment for several months due to liver problems, and then began Rifampin, which I have been taking for almost 9 months. Bartonella in all of this time has *improved* but is definitely not gone.
Houttuynia has been extremely helpful and I believe at high doses it is comparable to Rifampin: it seems to have the same "action" in my body in terms of which symptoms it hits. I have been taking that at high doses since May or June.
I started Mepron for babesia less than 2 months ago and I think hitting the babesia is now helping with my bartonella treatment.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you for this thread.
can those on rifampin "combo" please mention what else they took with rifampin
i have never tested pos for bart but i have a lot of symptoms
started rifampin alone last week and herxed big time immediately with pain, fatigue and psyc stuff that was very scarey-anx, dep, uncontrolled crying...scarey -messed up thinking(not suicidal tho)
i am continuing rifampin at only 150 am and 150 pm - still herxing but can handle it. maybe when load is knocked down i can get up tp 600 once a day
again thanks for this post...
oh-ps-this is important:
one of herx pains was very bad pain in nodules under my left ribs. i have had this pain getting worse for 3 years. had ct, ultrasound, palpitation by many docs-noone can figure it out. first time i take rifampin-poof-pain right in that spot.
my llmd says he has had patients with lots of nodules on spleen go away with tx-he said don't worry about testing anymore -just tx...
so now i get really happy when i have pain under my ribs...wierd disease(s) - but we'll see
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
lymeinhell-
how long did you treat with rifampin?
Posts: 1104 | From N.California | Registered: Jan 2008
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Alv
Unregistered
posted
Doxy , rifampin and azithromax...that was my first combo ...than later added herbs that are mentioned above
posted
Just wanted to say...thankyou for this thread. I really appreciate the testimonials.
Posts: 136 | From Arizona | Registered: Sep 2008
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tickbattler
Unregistered
posted
Yes, this is a very useful thread. My husband is treating bart now with Levaquin. Several bart symptoms have abated and he has been on it for 2 months.
I'm curious, did any of you have headaches from bart that cleared with treatment? If so, how long into treatment did it take for them to clear? (We've been trying to figure out the source of my husband's constant headache!)
posted
10 weeks rifampin/zith/doy, followed by almost a year of bactrim/zith..off meds 6 weeks and doing ok..had a really bad case of bart.
Posts: 561 | From eastcoast | Registered: Aug 2006
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Angelica
Unregistered
posted
Still dealing with bart here.
I think it would also be helpful if people would state what kind of headaches they have or had because babs can cause headaches as well.
I was getting really bad headaches around my eye area and sinuses which are suppose to be a bart symptom not babs. I did Biaxin for many months but have not done Cipro or Levaquin or typical hardcore bart meds.
Currently I am doing Resveratrol and Buhner's herbs for bart along with A-Bart a tincture. I still get some sinus type headaches but nothing like I was getting where I had to go to bed for two days with intense pain.
I don't know if the Biaxin made the intense headaches go away or the herbal treatment. I am hoping they do not return ever! I would get them the minute I would over do when I should have been resting instead.
posted
I think the problem is that many are dealing with Bartonella, Mycoplasma and the mystery bug all. Or some combo of those 3. That is why what works for some won't work for others in my opinion.
Hubby is still battling -- I think he has all 3 infections I mentioned.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i don't usually have headaches...but with my rifampin herx i am getting them
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Angelica
Unregistered
posted
I think the problem with bart is that it seems to go into remission with abx treatment and then people think it is gone and a year or so later it comes back to haunt them.
I am hoping it is easier to treat or control eventually with the Bionic 880.
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I get various types of headaches that I attribute to Bart. One is a "ice pick" or "lightening" headache right on my left temple. It comes and goes. Another headache I get is in my neck and it goes up the back of my head. The headache I've had lately is mostly on the top of my head.
Posts: 1761 | From USA | Registered: May 2006
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posted
Frontal lobe headaches are most common in Bart. I had mild ones on occasion but that symptom has cleared totally now. Has been gone months.
-------------------- 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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jamescase20
Unregistered
posted
Ozone sauna
Gentimicin with ampicclin or minocin plused 5 days and 1 week off, for about30 days make sure its gone use live blood micro to verify...bart sits close to skin...bart likes the cooler areas.
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jamescase20
Unregistered
posted
"amp and Gent" I uncovered was used in hospitals for pats with infections of last resort.
I took it, and it really DID kill alot of bart, dont know if the amp did anything for it.
A study on bart showed gentimicin and doxy where the only 2 drugs that didnt create "super barts" (mutents that where resistent) and gentimicin was the only drug that was able to directly kill it. Pubmed mentions doxy or minocin and gentimcin for 30 days might prove an interesting treatment for bart.
Doctors learned to use gentimicin in a new way to lower damage to you risks. They use a single daily dose...its higher in number of mg in a single dose, I used 160mg in one dose a day, in 5 day max stents. This way, the gent kills in a shock dose...then the body can clean up the gent toxins the rest of the day and recover for its next dose the NEXT DAY.
I used a tiny dose at first to watch for any alergies etc.
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jamescase20
Unregistered
posted
Usually you take a blood test after your 3rd gentimicin dose, but my duck told me, If I only used it for 5 days at a time, and used the single daily dose trick, and I knew what liver failure symtoms might be and was not stupid, I should be fine forgoing testing if I used it for 5 days only and took breaks of at least 5 days.
And I was fine, and I have a scope and saw alot of bart damage in my blood. And nothing else seemed to help but gentimicin.
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
My husband had very severe Bart, terrible shakes and tremors, cognetive issues very severe he had to cut down to almost nothing at work and he was a totally different person.
4 months of Levaquin and then 1 month of Cipro and he is 80% better is back to work 4 days a week and is his normall happy self - he is going on to Rizol MY with Rifadin just to make sure all is gone. He remains on Bicillin for Lyme but is a totally different person now.
I do believe you may need to hit it with diffferent combos for 4-8 months but again there are many different treatments available and lots of Gram Negative AB's that will treat Bart or BLO and from what I have read the Aminoglycosides are showing great promise..... Neomycin Gentamicin Tobramycin Viomycin Amikacin - Reserved for infections resistant to gentamicin and tobramycin. Netilmicin - New Spectinomycin
Does anyoe know if LLMDs are using carbapenems as they are now being used in increasing Gram-negative resistance?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Rianna,
Were the shakes and tremors a symptom of Bart for your husband?
I have been getting this symptom where I feel "trembly" late at night or even during the day sometimes too....almost like chills or shivers but I don't feel cold at all, just shakey, and my teeth want to chatter a little (though I don't really let them).
But it is NOT classic chills, just feeling shakey.
Does that sound like it could be Bart? It could be babesia too, but I wouldn't doubt it's Bart. Or, of course it could be any number of things for me.
Thanks!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Great thread. I am about to start Rifampin (600mg daily) and Zith (250mg MWF). Have been on pulsed Doxy and Zith for 2 yrs and am almost 100% well. Still have some anxiety and mild manic feeling that comes and goes. Also twitching and mild stomach issues that come and go.
Would love to hear more about successful combos. Funny my LLMD never mentioned Neomycin etc..but I am curious about these as you never hear about them being used for Bart.
Posts: 770 | From USA | Registered: Jul 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
[QUOTE]Originally posted by Hoosiers51: [QB] Rianna, Were the shakes and tremors a symptom of Bart for your husband?I have been getting this symptom where I feel "trembly" late at night or even during the day sometimes too....almost like chills or shivers but I don't feel cold at all, just shakey, and my teeth want to chatter a little (though I don't really let them). ___________________________________________
No his were tremors not shakes/chills, he could not hold his hands up or hold a coffee as it would go everywhere.
However.... what you mention is what I get and that is 'Classic' Babesia its like a shiver without a sweat that for me comes on late in the day, when I started babs treatment then my teeth literally chattered and I was shivering beyond belief. I am positive for Babs/Bart and Lyme
posted
What is RIZOL? I am taking Biaxin, Plaquenil, HH and Freeze Dried Garlic....any suggestions?
Posts: 136 | From Arizona | Registered: Sep 2008
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