posted
Just wondering how long you had to treat before no longer being positive for Bartonella??
Posts: 376 | From New York | Registered: Jan 2011
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TF
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I don't think most people get tested for Bartonella again after getting symptom free. You would most likely continue to test positive for a long, long time since the test is looking for bart antibodies and we keep antibodies in our blood for years.
Are you really wanting to know how long most people had to treat bart in order to get rid of it?
If so, I treated it with levaquin for 1 month. THen, I treated babs with Bactrim DS for 1 year. My doc said it hits bart also.
In March it will be 6 years since I completed my treatment and I am still symptom free, enjoying my life.
So, it worked for me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks TF. That makes sense. I don't know what I was expecting from test results.
So how did you know when to stop treating for Bart? Did you just go based on symptoms or was there any blood work that your dr. used to help determine when to stop?
I will have to ask the NP what she will be looking at to gauge my progress. I wasn't really all that symptomatic when getting diagnosed so I know I am a tougher patient to treat because of that.
She mentioned on the phone today that some patients are treated 6 months or longer. I was disappointed to hear that. I just was hoping if we hit it aggressively at the beginning maybe I'd only have to do these antibiotics for a few months...
Posts: 376 | From New York | Registered: Jan 2011
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TF
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According to the Burrascano lyme treatment guidelines, the doc should treat for 2 months past the symptom free point. So, that is how you know when to stop treatment.
I wasn't symptomatic for bart and babs, but I tested positive for them.
Since I didn't have any bart symptoms, I didn't notice any change with the levaquin, which was the bart treatment. (Looking back, I had had 2 1-day episodes of burning of the bottoms of my feet, but that was it in the way of bart symptoms, and that had happened long before my bart treatment.)
But, as soon as I started the Bactrim for babs, I got these totally horrible weekly babs flares.
They were a living hell.
My doc said that babs has a 7 day cycle and that that was what I was experiencing.
So, it was easy to know when the babs was gone. I just went by whether I had any more flares. It took months for them go to away. They first went from every 7 days to every 14 days. (My doc says babs also has a 14 day cycle, so that was the babs switching to 14 day cycle on me.}
After about 7 months, the flares were gone and I was totally symptom-free--totally. However, winter was coming on so my doc would not let me stop meds. Stopping in winter can lead to a relapse because winter is a stress on the body.
So, I had to take my meds for 5 more months!
I wonder if you have ever read the Burrascano lyme treatment guidelines. They are not an easy read because they were meant for doctors, but they tell you things like how long you generally have to treat each of these diseases.
The bartonella discussion starts on page 24. In his recent talks, Dr. B is saying that 4 months is the minimum treatment for bartonella. Here is what the Guidelines (dated 2008) say:
"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 consist 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."
You can also look at his treatment categories on pages 19-20. That's one of the places where he states to treat 2 months past symptom-free point.
When I got rebitten about 2 years ago, I got to my lyme doctor within a week of the bite and bulls eye rash. He treated me for lyme, babs, and bart all at once for 30 days. Since I never got any other symptoms except the rash and a mild herx on day 3, I was done treating in 30 days.
Other than a case like that, you are looking at months of treatment for someone who has caught the disease early. Most people have had lyme (meaning lyme symptoms) at least a year before they get a diagnosis and start treatment. For these people, treatment is at least a year.
You stop treating each disease when all of the symptoms related to that disease are gone--that includes flares and herxes. As you treat one disease, the others rear their ugly heads. So, you notice new symptoms or new diseases.
If you don't get agressive treatment, you will be in treatment forever. That's why I recommend that people read the Burrascano guidelines and find a doctor who treats like Burrascano. That is the quickest way to get rid of these diseases in my experience.
I have sent a number of friends to Burrascano doctors and they have all gotten rid of their lyme, babs, and bart.
I don't know how long you have been sick with lyme. The chances are, the more you learn about this disease, the further back you will look in time for lyme symptoms and you will find them.
The more educated about lyme I became, the more I saw symptoms in my past. I always wondered how people knew when they got lyme if they were like me with no rash or sudden illness.
I have determined that I had lyme for at least 10 years prior to diagnosis. The first 5 years I had it, my symptoms were episodic, meaning that I would have 7 month periods of strange muscle weakness followed by 5 months of normalcy. That went on for some time (about 5 years), but finally became constant symptoms and a lot more symptoms.
Think back and see if you had any unusual episodes in your past. I don't know your history.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you SO much for taking the time for this very helpful response TF! I really think my infection is recent...maybe over the summer. I never had saw a tick/rash. I was pregnant and had a 2nd trimester pregnancy loss in Sept 2010. I had a lot of exhaustion during that pregnancy but it was tough to determine was related to pregnancy, having two very young active boys (both under 3 at the time) or a possible other issue. My fatigue actually improved by the time I had an appt in Nov (which made me think it was more due to the hormones of pregnancy/trauma of the loss) so my diagnosis of lyme and bart was a surprise.
I do remember a bout of blurry vision in one eye that was concerning (now think maybe it was the bart) and I have this weird hyperpigmentation on my thighs and underside of arms and chest. I had white spots on my arms too that have faded. All of this developed over the summer right before my miscarriage.
The NP said by looking at my Igenex results it looks like a recent infection and I really can't think of longer term symptoms. I had been in relatively good health and nothing really stands out before the summer.
I think I am lucky to have most likely caught this in the earlier stages, but not as early as if it was caught right away. I am not sure how much it grows into a problem untreated for a few months.
I started Rifampin on Jan 1 and shortly after added in Doxy and then Flagyl. I am now on Rifampin, Flagyl and Ceftin at pretty good/strong doses. What do you think of that combo for getting rid of lyme/bart? I have looked at Dr. B's guidelines but will look at it again more closely.
Sometimes I question if I am really intuned to what is going on in my body. I haven't really had any herxes. The only thing that comes close is some brain fog when I started a new med (like w/ Flagyl and Ceftin) and got up to the highest dose. It lasted a day or so and then improves. I feel a little tired but I can still exercise and take care of my boys.
I would think on this combo of drugs I should have some heavy duty herxes. Would you consider my combo of drugs aggressive treatment? I hope so since I can't imagine being on any more drugs or any higher doses.
Again many thanks for your feedback. I am going to read those guidelines again now!!
Posts: 376 | From New York | Registered: Jan 2011
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TF
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For the correct rifampin dosage for bart, see this site:
Ceftin and flagyl is a good combo for lyme. Just check your dosages against Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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map1131
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I wouldn't trust or bother with testing. I would base treatment on symptoms.
From experience Bart can lie low and be sx free and can raise it's ugly head after abx treatment. He came roaring back in two weeks.
That was 3mths of treating. I'm still fighting this battle.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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