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Anyone treating or have already treated Bartonella?

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Posted 11/3/2009 12:11 PM (GMT 0)
Whew! What an emotional roller coaster ride!

If you already treated, what abx did you use and for how long?

If you are still treating, how is it going?
Posted 11/3/2009 12:32 PM (GMT 0)
I did both Levaquin and Rifampin together. For 6 weeks! That was a tough one. I did not test positive for Bart, but we treated just in case!
Posted 11/3/2009 4:29 PM (GMT 0)
Hi CG,

I did Biaxin and Bactrim together for 2 months (it's a combo that hits both Lyme and Bart), and now I'm on Rifampin and Bactrim (and Ceftin, but Ceftin's strictly for the Lyme).

The first combo didn't do much for bart, for me. I herxed pretty strongly, but I'm pretty sure it only hit Lyme. After two months, when I had no improvement in my Bart symptoms, my LLMD switched me. I guess Bart is supposed to treat faster than Lyme? Because he didn't seem concerned about the rest of it not improving...

Anyway, I've now been on Rifampin and Bactrim for a month. The last three weeks, I have felt worse than I have ever felt. I'm sure it's just herxing, but geez! And treating Bart always makes my mood swings and anxiety worse, which makes all the rest of it seem worse than it is. So I know what you mean about the roller coaster ride :)

I think I've mentioned this before, but my Dr is trying to avoid the quinolones (like levaquin), because I already have major tendon problems.

I'm assuming you're treating it? What are you using?

Nicky
Posted 11/3/2009 9:01 PM (GMT 0)
I started with levaquin last winter but after one month I developed tendonitis. Then I tried Rifampin but could not tolerate it. . or anything chemical, so I started HH capsules. I increased the HH to 16 a day and was keeping the bart at bay but not wiping it out. Then I began to relapse. I didn't know what was happening but after 3 months of the "herx not going away and getting worse", I figured it out. I upped the HH to 20 capsules but that did nothing. I was getting hot flashes, bad headaches and burning hurting shins. Then I got flu like symptoms (who knows maybe I had the flu). SO I tried the rifampin again and I can tolerate it at 300mg. As soon as I started it the hot flashes went away and the headache and pain in shins diminished but emotionally I am crashing. I plan to start 500mg zithromax the middle of this month. I read in Schaller's book that a man was healed in 8 weeks using 500mg zithro and 300 mg of the drug similar to rifampin. I am still taking herbs for everything. For bartonella I now take 6 HH-2 capsules a day, 800mg reseveratrol, 400mg nattokinae, 1000mg lactoferrin and 2400mg N Acetyl Cysteine. I think the bart must have gotten resistant to the HH so I am quitting it when I run out. It is also very expensive and I could not afford to take the recommended amount for "the cure". When I re-read Schaller's book he never actually says anything cures bart except that one person, a minister who literally was losing his mind, was cured by the above mentioned combination. Schaller says levaquin does not work. It greately diminished my bart symptoms but left me with worse.
Posted 11/9/2009 1:14 AM (GMT 0)
My wife was cured of Bart using Rifampin at doses above the maximum for a few months. She was a big orange oompa loompa for weeks and weeks. I haven't tried Rifampin yet for my Bart, (because I am afraid of the rifampin side effects), but my Bart finally seemed to respond to IV Doxy this past month. I don't think it is cured but my test results finally went down. I was over 1300 on the Bart antibodies when anything over 250 is an active infection. Even Dr. F in northern NJ said, wow these Bart numbers are really high. Anyway, I can tell you rifampin if you go high enough long enough did work for my wife, even with both lyme and bab co-infections.
Posted 11/9/2009 7:24 PM (GMT 0)
What was high enough long enough for your wife? I was told to take 600 mg a day. Did she use another drug with it? It is often given in combination. It is always good to know what has cured someone - is she cured? That would be SOOO nice to know there is someone out there that found a CURE. Doesn't mean it will work the same for the rest of us but it gives us hope.
Posted 11/14/2009 3:42 AM (GMT 0)
She doesn't remember the exact dosage, I remember I looked up the dosage she was on in the PDR (Physician Desk Reference) and was like "wow this dosage is well above the maximum dosage in PDR book." It wasn't double the max dosage though, it was just higher than the max dosage. The doctor said, yes that was intentional. She was on it for about three months. She was wiped out with lethargy during that time, hard to say if it was herx or side effect. She was very orange in the eyes, sweat and tears. Her skin was a bit orange as well. I think even her poop or pee was orange, I can't remember which.

It is hard to say if she was totally cured of Bartonella with complete certainty. I believe she was and so does she. I can tell you that it has been over one year from then and she has never tested positive for bartonella again and has never gotten any more bartonella rashes. (She still has lyme and Babs though, mostly in remission). She wasn't on any other drug at the time ( I think rifampin is a combination of three drugs together) except an SSRI for depression (I think Zoloft and Wellbutrin or something like that). Hope that helps.
Posted 11/14/2009 5:49 PM (GMT 0)
Cmacaran,

Yikes! If she was orange, she was probably jaundice. Her urine being orange is another sign. That is not good. Did her doctor know this?
Posted 11/14/2009 6:25 PM (GMT 0)
Actually, Rifampin turns your pee crazy orangey-red colors. I haven't heard of it affecting skin colour, though.
Posted 11/14/2009 7:54 PM (GMT 0)
I'd still be very concerned. Too many people think this is a side effect of their medicine when it's actually their liver struggling to function.

I'm just glad she is okay.
Posted 11/14/2009 9:31 PM (GMT 0)
Yeah, it turns your urine orange and your saliva and even your sweat and tears! She probably looked orange when it was hot and she was sweating. I am still not up to 600 mg yet. Kind of worried about going too fast.
I am glad she is so much better Cmacaran. It is wonderful to hear that something works, especially when you are using it. How did she know when to quit? Did she get over her fatigue and other symptoms or did the doctor just take her off to see how she felt without it?
Posted 11/14/2009 10:11 PM (GMT 0)
Wow, what a nasty side effect. I think that would have freaked me out seeing that. I've heard that drug works well for Bartonella though.
Posted 11/14/2009 11:55 PM (GMT 0)
Yes the orange color is totaly a side effect and is not necessarily linked to any liver or other problems.

She got off of the rifampin after about three months as a mutual decision of her and the doctor that it had been a long enough time and she was getting worn down. Just the last week on the rifampin her eyes started to get glassy. Her liver blood work and all the blood work they ran during her three months on the rifampin always came back normal. But she was terribly fatigued and the glassy eyes were freaking me out. She went right from the rifampin to no antibiotics and visited an all natural 3 week integrated medicine detox facility (detox for sickness not addiction). She did vegatable juice, exercise, energy medicine, colonics, saunas, chelation, had her mercury fillings removed and massages for three weeks. She was totally recovered at the end of the three weeks from the rifampin side effects and fatigue and she was completely in remission from the remaining lyme and babesia infection for 6 months (she switched to herbals to keep healthy without trying the abx root again).

Like I said the bartonella never came back and I do believe it was from the rifampin treatment that cured it based on the types of rashes she had during the treatment and the blood tests. She still tests positive for lyme and babs but she continues to treat with holistic, naturalpathic or herbal treatments (for over a year), she isn't cured but her symptoms go up and down, she is sometimes sicker and sometimes doing well, generally she functions and has a normal life.

I on the other hand, I haven't been off antibiotics (except for three weeks) for the past year and a half and continue my struggle with Babs, Bartonella and Lyme. Whenever I lighten up on the abx I get very bad relaps of a brain infection that never really goes away and is majorly scary, with encephalitis and craziness. Like her I have good months and bad months. I also do some herbal, and a lot of the natural paths. For my journey the abx seem necessary to keep my brain infection in check. The only times I have really felt healthy this past two years was after two months of IV abx. But when I go off IV and just do orals the relapses happen.

 

Anyhow, back to the rifampin.  Like I said it seems like a very powerful and useful drug.  I would take it if my doc put me on it.  Keep doing the blood tests to make sure all your organs are functioning.  Also, I read if you are ever on it a second time in your life (several months or more after you stop using it), you might develop a sensitivity from the first time.  If at any point in your life a doctor suggests you go on rifampin again, double check with him that you have already been on it and have him explain the risks of using it twice.

Post Edited (Cmacaran) : 11/14/2009 5:00:26 PM (GMT-7)

Posted 11/15/2009 3:07 AM (GMT 0)
As an update- I have been on Rifampin for 6 weeks now, and I think I'm starting to have improvement. I felt like crap for the first month, but I think it's finally starting to get rid of the some of the Bartonella.
Posted 11/15/2009 11:18 PM (GMT 0)
CG, Yes, it certainly is a roller coaster!! What are you taking again for the Bart? Good luck.

Cmacaran, Is there a reason your doc has you on iv doxy instead of rifampin? My llmd put me on iv doxy too about a month ago after being on iv rocephin for 6+ months. I just don't remember if he explained the reason for his choice.
Posted 11/16/2009 12:09 AM (GMT 0)
I needed IV due to a brain infection (so rifampin wasn't on the table), I started on Rocephin after 5 months had a reaction. Took one month or so off and went on IV Doxy. My LLDM also offered me one other IV drug, my LLMD uses three different IV drugs depending on the patient. The third one was similar to clindamyacin I think, but it didn't have good penetration into nerve cels or central nervous system, I forget which. The Doxy goes very deep into CNS I think. It really goes after the neuro pain when taking in IV form.
Posted 11/16/2009 12:38 AM (GMT 0)
Thanks Cmacaran. That certainly explains why my llmd has me on it.
Posted 11/16/2009 1:08 AM (GMT 0)
Scorpio,

I was on Levaquin for Bartonella and was doing good but my liver enzymes went up so doctor wanted me to stop everything. I'm now in the process of doing a liver cleanse and getting on supplements.

If I could just stop running fever, I'd be okay. These past few days have been terrible. My whole body hurts.
Posted 11/16/2009 1:33 AM (GMT 0)
CG, I'm so sorry you're going through such a rough patch again. Is there any chance you might have the flu? I know for me, it's impossible at times to tell if my symptoms are from LD or something going around. Not that it ever really matters because I'm miserable no matter what the cause. I finally stopped running fevers again and hope you do too. Feel better!
Posted 11/16/2009 1:51 AM (GMT 0)
I have no clue if I have the flu. I run fevers every month so I don't know what's what anymore. I think I'm having a Lyme flare which usually happens around this time every month but I just feel really bad this time. I have been waking up drenched in sweat. Yesterday, I laid down at 5:00pm and didn't get up unroll 11:00am this morning. It's horrible.
Posted 11/16/2009 8:37 PM (GMT 0)
I hope you feel better soon CG. I got very sick and did not know what it was - I think it was a virus going around as the pharmacists said he had it too.
I also read that taking rifampin a second time can cause you to get sick with flu like symptoms. That is why I am being so careful with it. I only took it a short time before and that was over 7 months ago. The LLMD didn't tell me anything about it. I am just so worried about going up to 600 mg. I am only taking the zithromax every other day instead of every day so I have to raise that also. I was getting insomnia which was wearing me out causing a lot of depression so I cut the zithro back. Now I get up in the middle of the night to take both of them and I sleep much better. Then when I get up for the day I take the acidopholus so I hope I dont get too much yeast.
Rifampin does not work as quickly as levaquin did but it is not as harsh either. It has been two weeks and I am starting to feel better.
Posted 11/17/2009 5:41 AM (GMT 0)
scorpio how long have you been on the IV Doxy, what dose and is it working? Any other abx at the same time? Just curious to compare notes.

I am on week 7 IV Doxy and malarone 2 day, up to 200 mg twice a day and it took 5-6 weeks before I felt any better.
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