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Bartonella treatment and die off: what to expect
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Bartonella treatment and die off: what to expect

Phew, I recently had a horrible flare!  My diary indicates in being a little more than 4 weeks since my last much milder flare.  The most recent came along with a severe "throat infection".  My ENT said that it looked like I scraped my throat with some sort of hard/sharp food, but I would've remembered that sort of an incidence, so I don't agree.  When the deep "scratches" healed the pain reached much deeper in my esophagus where my ENT couldn't see with his scope, so he sent me to a GI that ruled it was an ulcer due to doxy use, but wasn't sure and ordered an endoscopy.  Scheduling didn't pan out and I never had it done.  The pain healed in a little over a week and since I was unable to take any ulcer healing prescriptions due to high blood calcium, I'm thinking it was not an ulcer.  From what I read they just don't up and go away easily, especially without medication.
This throat issue was followed immediately by a horrible flare.  My lymphatic system was a clogged and inflamed mess.  Where my axiallary node was removed serious build up was in it's place and I was so sore.  The bottoms of my feet hurt like hell during the night, my anxiety increased, muscle spasms galore, and I had the worst stiff neck yet.  I still can't move my head to either shoulder.
It was suggested to me by another Lyme group
(ps mojo, this Lyme and confections group is grossly negative and depressing, so much so that I left the group due to the horrible posts.  Glad you don't frequent it anymore and I know I recommended it when I first joined.  I got a little bit of good info out of them in the beginning, but it wasn't worth the rest.)
that the "scratches" in my throat could've been bartonella markings.  
I am currently only being treated for Lyme and babesia.  Though my LLMD does believe that I have Bart as well, she is not treating me for it yet.  
My question is if I start treatment for Bart how bad will the die off be?  Should I just start slow?  I am currently taking 200 doxy, 300 plaquenil (she is switching me to mepron in 2 weeks), nystatin, 500 azith, and 400 Bactrim (twice daily).  Would adding rifampin to that be too much at once?  Since I personally feel Bart is my MAIN issue now, I'm most worried about a harsh die off and what to expect.  Is it a less severe herx than Lyme and babs?
Sorry this was so winded!
11 Comments Post a Comment
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5792451_tn?1390938290
I don't have any experience with treatment, but I wanted to ask you about your calcium levels. Does Lyme cause hypercalcemia? My calcium level was 10.3 (only 0.1 over) and my doctor never addressed it. I demanded to have my parathyroid levels checked after dr.google told me it HAD to be my parathyroid or cancer, and they were normal. Hopefully I'm cancer free :-/.

Anyways, the foot pain, is that caused by Lyme or a coinfection? My feet absolutely KILL me. During my first flare my husband wanted to put me in the psych ward because I would complain about my feet shrinking over night and having to stretch them back out before I could walk in the morning lol. I've questioned my sanity ALOT lately *as I sprinkle spices in my bath water and brush my skin*
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4939681_tn?1361302899
If your doc is dismissing a parathyroid problem based on a normal PTH result alone, then that is a bad assumption.  You should have your blood calcium repeatedly checked over the course of 6 months to a year.  If the majority of the results are high and PTH is normal but increasing in value, you probably have a parathyroid problem.  PTH values are helpful, but not diagnostic.  A sesstamibi scan is required to diagnose a parathyroid issue.  It wasn't until my scan was performed that I was properly diagnosed.  The surgery will have to wait until I get Lyme under control though.
I have heard of many cases of Hashimoto's (which I also have) that can cause slightly high blood calcium as well.
Bartonella is said to be the confection that causes sole pain (especially at night).  Incidentally, those with hashimoto's, or hypothyroid, or b12 deficient all suffer from sole pain as well.
LOL, being sick makes us do a lot of things we feel silly doing, even crazy, but if we have the slightest hope we'll fell a tad better... Well, bring on the crazy, right?  :)
Hang in there!
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1763947_tn?1334058919
Can your doc give you Malarone instead of Mepron? I have heard from many latley that Mepron isn't working, for me it didn't work either.

I took Malarone, Rifampin and minocycline (which is in the same family as doxy but helps barts and lyme). Is this all from your new LLMD?

Of course I would check with your LLMD but that list of medications sounds like too many. My Babesia (knock on wood) was gone within 6 months. The Barts is still hanging in there.

Hugs
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Avatar_f_tn
Rifampin can be loved or hated. I can't take it and a friend was put on it a few weeks ago and stopped sleeping! (He went off Rifampin!)

Other treatments for Bart are Cipro or Levaquin. Please read all the warnings about both of them before starting them.
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4939681_tn?1361302899
So when you guys "herxed" in the Bart abx, was the herx noticeable?  I'm wait listed with a new LLMD, so I'm sticking with the one I have until, but calling her for Bart abx.  I'm nervous though.  Do my symptoms sound mainly Bart now to you guys?
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1763947_tn?1334058919
I couldn't take levaquin because I got the side effect of tendonitis. I had to go up very slowly on rifampin because of herxing. Once on it, I was fine.

IMO, it sounds more like Barts. What are your symptoms of Babesia? I had the classic air hunger, cough and drenching sweats. Ugh.
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4939681_tn?1361302899
Got a call back from LLMD today she wants me to start Mepron, stop plaquenil, continue doxy, bactrim and azith.  She also is shipping me A-Bart.  I am to start 1 drop and if tolerated to keep bumping up until I get to 15 drops a day.  

Do any of you have experience with A-Bart?  Know anything about it?

I read the Byron - White method for A-Bart and it sounds great!  Just curious as to it's effectiveness.  
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Avatar_f_tn
Cipro and Levaquin both gave me pain---- hard to say where, except 'all over''---- but probably tendons, muscles?, ligaments? I foolishly stayed on them too long-----thinking "I'm tough. I can take it".

Wrong! I thought that those pains would go away when I stopped them.'

Wrong! Although I can't prove this----- they've stayed with me for years. Afterwards, poking around on forums to see what other people had to say----- I wasn't the only one.

I also found out that a person doesn't have to be on them long to get some pretty horrible, long lasting side effects. A friend (no Lyme) took L. for just 3 days for something else then quit because it gave  her diarrhea. Now she has a partially torn tendon in her foot that was probably the cause. (Again no proof.)

Class action suits are plentiful for Cipro and Levaquin. Making some lawyers rich. Yeah, all drugs can have some bad side effects. But those two seem to have specialized in it.

Now----- the really important part in all caps: MANY PEOPLE HAVE LOVED THEM AND GOTTEN SOME GOOD RESULTS FROM THEM.

So----- it's still up to each person and their doctor to decide.
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4939681_tn?1361302899
So, A-Bart may be a good substitute starter treatment then?  I wonder if it's effective?

It's also apparently good for methylation which my mthfr indicates I need!
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Avatar_f_tn
I'm not a believer  of herbal concoctions as a substitute for science based medicine. That's just my personal decision.

But as an adjunct to medications for a disease----- most of them are probably o.k.

Sorry I can't help you there. :(
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Avatar_m_tn
Herbs have been used for thousands of years successfully and alot of meds were based on herbs and originally synthesized from them. They don't have nearly the side effects, don't ruin your intestinal flora etc. I have found that some of herxing is really just the toxicity of the meds- and what is called science is often guesswork. If you browse through a PDR many meds will say "mechanism unknown". There are thosands of deaths a year from drug reactions (5th leading cause of death in the US). There are thousands of journal articles on the antimicrobial effects of herbs. The science is there but there aren't as many as the profit isn't there for pharmaceutical companies to fund the research. Some of the best lyme docs- Corson, Klinghart, etc heavily rely on herbal compounds and some books and websites will cite many journal articles
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