My LLND appt.

So, yesterday I had a face-to-face appt. with my LLND. Because of the distance, our appointments (except the first one) have been via telephone.

I was expecting Rifampin and doxy to treat bart. He said not yet. I'm disappointed. After looking at my labs he decided that even though the liver ALT enzymes have gone up with the Tinidazole, he thinks they're still okay to continue for a while longer and continue busting cysts.
I told him that I felt like I was backsliding a bit. He asked me if my feet were sore again, and I said "no". Then asked me about my rib pain...had it returned? I said it had for a couple days in the past month.
I said I haven't improved in the past several weeks...and maybe even feel worse. He said that during healing, you can have periods of not feeling as good. It was his opinion that I wasn't backsliding.

I told him that my worst symptom is still my left shoulder blade, left arm, hand...nerve pain and stiffness.
So, he asked me if I would consider three acupuncture needles in the area of the shoulder blade muscle...and I reluctantly said okay. He pressed around my shoulder blade, and had me move my arm forward...and it did hurt where he was pressing. Then he left the room and had me lay down on top of the exam table. When he came back in to do the acupuncture, he felt around my shoulder blade area again when I was on my stomach, and said, there was no tightness in the muscles...and I said it didn't hurt now when he was pressing. He spent a few minutes feeling it, and said he didn't think it was 'structural' afterall...and that he didn't think I would benefit from the acupuncture.
So he didn't do it.

It didn't really make sense to me...as you'd think he'd just do it and take my money. Also, even if there's no tight muscles...and no structural injury/damage...you'd think acupuncture would work anyway, wouldn't it? I've never had it done...but I thought it worked on any kind of pain.

Maybe he's only knowledgeable in one type of accupuncture?

He also felt around both shoulders (not blades, but top of shoulders) and asked me if they hurt, and I said they didn't - only when I move them - but not when you rub them, or press on them. He said that he figured that there wasn't anything structurally wrong with them either, that it was possibly referred pain.

So, if no rifampin and doxy now...that means another month at least. - Which is putting us close to the summer - when I can't do doxy....ugh...

I don't know if I'm happy about the status quo...but don't know what else to do...I could just add my biaxin back in for a few weeks. - I wonder if maybe the biaxin was doing more than we realized. I stopped because of a rash...but it could be a lyme rash.
hmmm

Revive - I thought I was backsliding and not herxing because I wasn't feeling really horrible like my herxes have been. It's just a general increase in some of the pain I'm having.
The protocol I am on is Ceftin plus pulsing Tinidazole two days a week. I've been on Ceftin since end of November...and started pulsing Tinidazole end of January.
Maybe only taking the Tinidazole two days a week - maybe it takes longer to bust the cysts.

It's sooooo darned hard to know what to do...and gauge - backsliding...or just increase of bug killing - but not enough to herx hard?

ughh

I just didn't want to wait and go on Rifampin in May or June - due to the sun issues...my LLND prefers doxy to mino - and that's what I'll be adding to Rifampin...last summer I had to discontinue the doxy - couldn't tolerate the sun.

So I wasn't aware of sun issues with Rifampin, I don't see it written on the bottle. I know doxy can make you sensitive to it.

Girlie I think herxing can be milder as time go s by, but most of my herxing has been pain.

I've always viewed treatment as a hopefully steady amount of bug killing (working around the growth cycles, of course).

And, I would think that, as we heal, the herxes aren't as "dramatic"....that makes sense to me.

It seems best to trust the doctor who has the knowledge and experience to treat us.

Hi girlie, I know exactly what you mean about worrying that you haven't communicated effectively with your doc. I have the same worries, and don't like to really question too much . . . hence lots of questions on here! ;-). It's just so frustrating and so difficult to know you're on the right thing . . . our lives really are in their hands to a large extent. I'm interested to know why your doc prefers doxy to mino with the rifampicin . . . I'm sure I read on here somewhere that the mino/rifampicin combo was better than doxy/rifampicin, which is why I chose to go with mino (I had the choice) but now I'm wondering if that was the right way to go :-/. I also thought I'd read that mino is better at crossing the blood brain barrier, and as all my issues are neuro and brain, I wanted to take something to hit that area! It's so frustrating though . . . Like you, I'm just impatient to be well again, and feel that nothing is easy with treating this disease :-(

Thanks for the responses. IHL and MM - I guess you two are in the same boat...waiting impatiently to feel like we've turned the corner.

CD, Revive - yah, I guess the Dr. maybe making the right call re: Rifampin - maybe wants the lyme bacterial load to be down more before adding the bart killer.

Flossie - I'd like to do mino as I tried doxy...and even tho mino isn't good with sun, either, it's apparently not as bad as doxy. I don't know why my Dr. is stuck on doxy. I have heard mino is really good.

Revive - I believe Rifampin can be taken with either a macrolide or a tetracycline. It does reduce the effectiveness of some of the other antibiotics - doxy is one of them.