Clinical Diagnosis Difficult...(Bart)

Hello - First off, I apologize for not commenting on everyone's posts lately. I've been finding that sometimes if I read too much on forums (lately) I get overwhelmed and worried, so I had to try and step back for a bit.

I do have a question though and was wondering if I could get some input or experiences.

My LLMD (who has 25 years experience) who I also really trust, has clinically diagnosed me with Bartonella (I had a negative Bart test). However, I do have a Igeneix/CDC Positive Lyme test. From the very beginning, I did suspect Bart because of my symptoms matching others' with Bart.

My doctor went through my list of symptoms with me and said that basically, many of my symptoms are very Bart specific. We just started treating for it last month. I never herx though (I rarely even herx on Lyme meds).

I don't know why but I keep having such a hard time trusting a clinical diagnosis without a positive test. I love those "for sure" positive tests. I want to feel 100% confident that I have Bart, because that would explain so many of my symptoms, but since I don't really herx (or haven't yet), it's hard to get that proof, and also since improvement seems to be so slow.

Has anybody had a hard time with this type of issue? How do you deal with it? It is pretty common to contact co-infections along with Lyme, isn't it?

Hi Girlie, I not on Rifampin. I am on some other Bart meds (I don't even want to post because I always hear horror stories and other's bad experiences, which I understand, but mentally just can't hear of them anymore).

I don't herx in general (or it is so subtle I don't notice it). I just talked with my LLMD about this and he said not everyone has noticeable herxes and it's ok.

Just makes it harder to know what's going on with the meds you are taking.

I'm trying to tell myself that since I without a doubt DO have Lyme, and many of my symptoms are Bart specific, and my LLMD says I have Lyme, and that Lyme often brings Bartonella with it, chances are I have it.

But, I always second guess...

Yes, it's very uncommon to have only Lyme disease. Bartonella and Babesia are the most common co-infections still, I believe.

Not herxing might be a good sign!! It's likely that your detox pathways are working like they should!! I know that I'm envious!!

Not really - what we are saying is that you have the symptoms of Bart and your knowledgeable LLMD believes you have Bart as well - so you should believe you have Bart, unless otherwise proven different.

Yes, trust your Dr.

Logically, what you say about the herxing - being proof....makes sense...but guess what? I still question it....it doesn't seem to make it easier to accept.

It is just such a hard disease to figure out...and on top of that...we have very little support.

With most ailments....there's a treatment plan, and a timeline of when you should start to see improvement. And, usually after a short period of time...you feel better (somewhat).
This is like a roller coaster...up and down...

I can completely relate to all of this . . . Been in treatment for lyme for 18 months but have been treating Bart for about a month now (rifampicin plus minocycline). I think my Bart test was borderline, or inconclusive or something . . . so I too am left wondering. But all my symptoms have been neuro, and I'm stuck with tingling and numbness and dizziness that I just can't shift, so I feel that it may be Bart. I also don't herx greatly (which, again, you almost wish for when you're treating this stuff, just so you have some kind of 'proof'!), but have been noticing an increase in my symptoms (tingling, dizziness) since starting this combo, so am hoping that this may be some sign of herxing and hopefully killing something. It is all so frustrating though, and so slow and so uncertain . . . and, as you say girlie, we don't even get the support we really need, which makes it even worse! I feel like I'm stumbling around in the dark a lot of the time, trying to find the right thing to do :-(

RunnerGirl82 don't feel bad. I too had to take a break from the forum while treating with some of the member's own treatment. But now i come here more often because now I know that we will get through this.
I have never been positive for lyme (tested eight times first three months after the bite). Only band 41 reactive. Did Bart, Bab, Erlichia, HTLV all negative.
My symptoms, for sure are Lyme, Bart, and Bab and who knows what else.
Your LLMD is on the right track. Listen to him/her.

Thanks for all your comments.

I'm so impatient and doubtful for my own good...

Thank you, Traveler, I appreciate it :)