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my bart treatment - so far - your opinions??

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Posted 10/22/2015 5:52 PM (GMT 0)
I started 1/4 dose of Rifampin mid August. Went to half dose Rifampin approx. Aug. 20th, and full dose of 300 mg twice daily Sept. 5th. This was added to the minocycline I started in July.

First few weeks - I felt some changes happening...even felt a bit better - slightly.

But now - not sure what's going on. Last Thursday my left knee (both knees have been sore when bending since prior to lyme treatment starting over a year ago) - got significantly worse - no event - no injury - just sudden onset - couldn't even bend it - it hurt so bad. No visible swelling/heat/redness.
Couldn't even sleep on either side of my body - just flat on my back.
One week later - it's almost completely better - even feels better than prior to the 'attack'. (although I still can't lay on my sides - still hurts a bit making contact with other knee.

A week before the knee event - it was making a popping sound when I bent it...not really a cracking sound...but a louder sound.

Even though my knee has almost fully improved, I have felt worse in other ways - lots of shivering, and left shoulder blade area has flared - pain wise.

Last night I even had the pressure in my head behind my eyes. That has been pretty much gone since about a month into the mino, and the start of rifampin.

I'm concerned that my symptoms are starting to worsen - either that or a herx...
But I'm surprised I wouldn't have herxed sooner. With lyme treatment, I usually herx early on - like on day 4 or 5 and then randomly after.

I guess time will tell if i'm just worsening...
Posted 10/22/2015 7:17 PM (GMT 0)
hey G,

So you have ramped up with both mino and Rif. Taking anything else yet?
After 6 or 7 weeks at full dose of Rif things may get worse or stay the same. Give it about 3 months. It's hard to say right now what is a herx or a flare, or even which of the three B's is causing it. As you beat down Bart with this combo, Lyme sx could pop up too. Normally mino should keep it at bay, but not always.

You sound like its time to add to the protocol... maybe some herbals?
Posted 10/22/2015 7:30 PM (GMT 0)
Thanks tickbite - lyme symptoms will pop up even though I treated lyme for 9 1/2 months? So, I have to go back to lyme treatment either during or after bart treatment?
Just rif and mino right now.

I have some tinidazole that I was pulsing a several months back. Maybe I should pulse it a couple days a week.
I am so tempted when I see the biaxin in my cupboard - especially since after deciding on mino, I saw the webinar on bart treatment with rif and biaxin...

Yeah - I've been thinking about going back on bart herbs...JK, Sida, Hout and also adding in the Cryptolepis.

I will discuss with my Dr. in a few weeks. but, i'm concerned if I tell him about these symptoms, he will prematurely discontinue my rifampin and mino...I don't want to jump to that yet.
Posted 10/23/2015 7:01 PM (GMT 0)
bump
Posted 10/23/2015 11:25 PM (GMT 0)
Girlie

I don't know much about Bart treatment but I've developed an understanding that our infections can "rotate" in how they manifest. In other words, Bart symptoms might predominate now but, Lyme symptoms can also show up.

These bugs make biofilm with each other so it makes sense that symptoms can change as various bugs are destroyed.

As you know, I've been in steady treatment since September of last year. I still herx with Lyme symptoms - blech.

I'm not understanding why your LLND might discontinue your current meds. They seem to be effective for you...
Posted 10/23/2015 11:30 PM (GMT 0)
Also, how's the weather? As we head into winter weather, often there is more pain. I wish I had more insight to offer - sorry!!
Posted 10/24/2015 1:01 AM (GMT 0)
Girlie - i cant remember, did you test positive for bart or were you clinically diagnosed?? the knee pain sound more like lyme than bart to me - bart usually affects the brain/head, stomach, and feet as well as the nervous system. however you did mention head pressure......i havent been following your threads, but would like to help since i had bart....

do you take anything that is anti-inflammatory for your knees? fish oil, teasel root, japanese knotweed.....? bc even if you feel you finished treating lyme, you can still have leftover inflammation issues (like i do with my shoulder), and even though you dont recollect injuring them, they may have been weak enough while you were sick that a regular day's event could have caused an injury without you knowing it. I could be wrong, it could be lyme arthritis, or it could even be a herx. I am just throwing ideas out there. If it flares up then calms down and continues on that cycle - try to figure out if it coincides with anything (like the weather, certain foods you eat, if you walk more that day, etc) - this may help you figure it out.

did you have nerve pain too or no? bc if your nervous system was affected and you still have pain, you may want to consider taking something that will help your nervous system recover, I took Pc body bio (got it from amazon)

when your knee swells up, have you tried taking an epson salt bath? does it feel better after? just basically do trial and error - evaluate what may be causing it and what helps it and then you may be able to figure it out!
Posted 10/24/2015 3:03 AM (GMT 0)
CD - Trying to figure out what's lyme and bart is difficult...as we all know - much overlap.
So, after treating lyme for 9 1/2 months - and now it might show up while treating bart...hopefully the mino will be sufficient to knock it back?
Re: my Dr. discontinuing - he might see it as a back-slide....I don't know...just feeling unconfident right now.

Trav: - yes, the cold weather could be responsible partly - for my increase in shivering.

Chapelle: - bart clinically diagnosed. Bart is also known to affect the joints - which may explain why after 9 1/2 months of lyme treatment - I still had some knee, shoulder and finger joint pain.

I take boswellia/curcumin supplement that my LLND has prescribed for inflammation. I was on JK - am going to add it back in...was hoping for a 'stable' point first...but i think I will just go for it.
For my nervous system I take ALA, L-Cysteine - probably more - just can't think right now of all I take.
(Yes, I have nerve pain)
Although I have knee pain, there's never any visible swelling.

And, now a week later, my knee is pretty good....so I'm thinking perhaps a herx?

happyjo: I'm thinking I'd like to do biaxin with the rifampin - especially after watching the Webinar on bart treatment. I'd have to check my notes, but I believe it was 4-5 months I was on it - which was quite a while...but it wasn't with Rifampin...so it may not have been effective on it's own for bart.

Thanks everyone - for the suggestions/brainstorming. It's just so frustrating...I've just got to be more patient - I've only been on full dose for less than two months. A few people I've been emailing with said it wasn't until 3 months that they felt an improvement...so gotta give it more time before I go back to the drawing board. I've got to give it another month....
Posted 10/24/2015 3:07 AM (GMT 0)
Also wanted to say that I think bart has always been my dominant infection...so, if that's the case...even though I treated 9 1/2 months for lyme...now that I'm finally treating bartonella - if it's been dominant...then I'm gonna feel pretty crappy, right?

I was thinking that I would feel better because i'm finally getting at the dominant one...but really...I'm gonna feel worse before better, right?


geez - what a nightmare we go through...all the questioning - scouring through my notes...trying to make sense of it all.....blah.
Posted 10/24/2015 12:02 PM (GMT 0)

Girlie said...
I'm gonna feel pretty crappy, right? I'm gonna feel worse before better, right?

geez - what a nightmare we go through...all the questioning - scouring through my notes...trying to make sense of it all.....blah.

Yes and yes.....and I'm totally with you on this.

As you know, I had one of my worst herxes last week and I've been treating for over a year. However, this is the first time I'm aggressively treating possible co-infections which I seem to have.

We both know that untreated or inadequately treated infections can impede healing from others. It follows that we're going to feel crappy/worse before better as we treat each infection. sigh.
Posted 10/24/2015 2:13 PM (GMT 0)
I'm so sorry, Girlie!! I may have healed, but I'll never forget all that questioning of what's actually going on and what we need to do about "xyz" symptom. I do hope you are right in that it's part of a herx and will be over with soon.
Posted 10/24/2015 4:55 PM (GMT 0)
And just when we think we've got it all figured out - it throws us a 'loop' and behaves badly...lol

So, last night - just feeling horrible, shivering, pain (except the knees - go figure!)...trying my best not to cocoon - which is what I really want to do - just curl up in a ball and cry my eyes out.

So, I'm dry brushing, going for a epsom bath, taking my pinella and burbur...then my alka seltzer gold...hubby is rubbing my back, and hugging me...saying what's needed to say...

And in the back of my mind - the awful thoughts are creeping in - what if this is all wrong...what if this...or what if that...I had just read an obit in the paper of a 40 year old who died suddenly of an aneurysm...I resist the desire to google it....(yah, I know - crazy).

End up in bed - dreaming awful dreams...

Wake up this morning - laying in bed - I roll over on both left and right side...and my left knee doesn't even hurt. I've been having to lay flat on my back because laying on either side - not just my knee, but my entire leg hurts - up to the hip.

I get up, and I feel kind of good...So - I tell myself - yup- it was a herx....
So, I get up and both knees are feeling okay - my back is feeling better than it's felt in a week. My head pressure - not there....interesting.
Posted 10/24/2015 5:09 PM (GMT 0)
Yay!!! turn We love to hear of improvements!!! Congrats, Girlie!! You've made it through another tough spot!! I'm so glad to hear that you are doing a bit better again!
Posted 10/24/2015 5:31 PM (GMT 0)
Thanks, Trav!

So far, so good!
Posted 10/25/2015 10:11 AM (GMT 0)
So pleased to hear you are feeling better today, Girlie! Long may it continue, hey!! :)
Posted 10/25/2015 3:50 PM (GMT 0)
Thanks, Silly sheep!

So far, so good!
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