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Bartonella, treatment help? Confused!

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Posted 9/29/2016 8:37 AM (GMT -5)
So just when I had about 3 months free of bone pain and joint pain, I got hit really hard with the muscle twitching, pain, and fatigue. I had the three best days ever on treatment just before I crashed too!!!!
But my doctor wants to pull me off the rifampin and biaxin partially because she's worried about my liver enzymes (I'm now taking tumeric and drinking liver detox tea and only one of my enzymes were a little high) but I'm petrified she's going to take me off them in three weeks and my bartonella symptoms have come back full force.
Also, I'm concerned something isn't working. But I've also been on bicillin injections for 2 months when I got worse again. Could it be the bicillin is hitting the Lyme and somehow stirring up the bartonella?!?? I'm sooo confused!
Also, doc wants to treat me for babesia after bartonella but she thinks 2 weeks to 1 month is fine on Mepron and zith. Which I took in the past for 3 months and nothing happened....it was still there. Which I told her and she shrugged and said, "I wasn't treating you then." :/
Posted 9/29/2016 10:18 AM (GMT -5)
This is so hard..... Do you trust her or not? I remember feeling this way about my llmd when he had to call the herb company to find out what I should do next.

I suggest a sit down and tell her you are a planner and would really like to know her plan of treatment. That it will make you feel a lot more secure knowing this. You just want to help your anxiety, tell her.

You know those charts that say if you have this and then it has an arrow for treatment or if you don't have this there is another arrow for another treatment? I love those charts and want my life like that. LOL
Posted 9/29/2016 10:56 AM (GMT -5)
Violet - it sounds to me as if you are questioning you LLMD - something inside is sensing something isn't quite right? Could feeling bad be due to herxing? I know sometimes in my journey I have felt worse before I began to feel better. I am going the herbal route right now so I can't be of any help with regard to anti-biotics. In my reading I've never come across anything about an antibiotic stirring up an infection it isn't designed to treat - but that doesn't mean it doesn't. I like to search pubmed for science articles about anything I am taking.. knowledge is power for me. Hoping someone comes along more knowledgeable than me.
Posted 9/29/2016 11:00 AM (GMT -5)
violet these infections have layers when you get rid of one symptom another can pop up. my worst one didn't surface until 1 year into treatment! while we can bring our knowledge of what we learned to the discussion in the end you need to trust the treatment plan and that comes ultimately from your LLMD. if you are uncomfortable, etc. you need to work it out with them. if you go off and do your own thing by tweaking too much what the LLMD plan is its hard to gauge progress. i did that for a while and now i'm much more restrained in what i do outside of what my LLMD says.
Posted 9/29/2016 11:02 AM (GMT -5)
I asked my doctor about a general plan and she kept on saying, "I don't know. I don't know. It's not next month yet." (It was 8:30 in the morning and I think she might have drunk too much coffee and was jittery. Haha) I like her better than any of the other doctors I've seen. But I am doubting just a little bit that she's not going to be aggressive enough. I've been continually sick for 3 years now and just want to finally make some headway.....
In no way am I going to go off treatment or strike out on my own. I'm just afraid she'll refuse to continue the bart meds and then I'll be stuck.
Posted 9/29/2016 11:37 AM (GMT -5)
Violet - I took a 2 1/2 month break for my liver enzymes. Then I went back on abx.

One or two symptoms came back - minor ones...

And...now my liver enzymes are fine...even with Rifampin. So, for me I believe the liver enzymes were partially due to the infection.

Something is working - three months without joint or bone pain...that is improvement for sure.

I get new symptoms popping up...sometimes just for a few hours...sometimes for days or weeks.
I figure i've got the infection in every nook and cranny...and I'm going to 'feel' it in every one of those areas..at some point.
Recently - it was pain just below both butt cheeks. not bad pain, though. And it was gone within a week.

Having one of your liver enzymes slightly raised isn't really something to worry about...you may be able to take a break for just a few weeks, and retest...and go back on the Rifampin
Posted 9/29/2016 1:02 PM (GMT -5)
Thanks Girlie. :) that's what I thought too. I was a little confused why the doctor thought it was a big deal but I think she also worries because I'm petite. It makes me feel better though that you seeme I think this is normal. It's just scary when you think you're going in one direction and all of the sudden you're back where you started. This stuff is like playing snakes and ladders!!!
Posted 9/29/2016 6:06 PM (GMT 0)
>>It's just scary when you think you're going in one direction and all of the sudden you're back where you started.

get used to it ;) seems many folks with these infections are constantly going through ups and downs. i've been at it for over 19 months of treatment and still have new symptoms popping up.
Posted 9/29/2016 1:25 PM (GMT -5)
I'm got you beat, Rikky1 over two years and counting.

Although, I did have a couple breaks....so gotta subtract that time.

one for 2 1/2 months...and one for a few weeks.

Gotta say though...the past week, I'm feeling less back pain...feeling more optimistic...
and all of a sudden my front shoulder is pain-free.
Posted 9/29/2016 1:40 PM (GMT -5)
Rikky1, I have been in constant treatment since January 2014. So I know things go up and down and I've had Lyme for over a decade. Doesn't make it any easier with time though.
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