Still no herxing..... What does that mean?

Utah - is it possible that your detox methods are just very effective, and you're not noticing a herx...except maybe for the headache? Have you been really good about your detox? If your detox is really effective, it will manage the herxes....

I have also read that some people don't notice herxes...or it happens many weeks after.

BTW how long have you had symptoms prior to treatment?

I have had symptoms for almost 6 yrs, but unfortunately had clueless doctors who diagnosed me with anxiety disorder and CFS. I always knew that something was wrong medically, and they just weren't finding it.

My symptoms are all neuro. I don't know how long it takes to fix neuro, or if it even is fixable. My hormone doctor, doctor #13, was the one to suggest the IGenex test. It came back CDC neg and IGenex IND. So I don't even have a positive test!!!

So, I don't know if I actually have Lyme. I may just be an imposter! Lol. I never saw a tick or rash. I never had the flu like crap! All I know is I have a list of terrible symptoms that are ruining my life. And my labs all come out fine! And the doctors all want to shove antidepressants at me.

My 3 weeks of treatment haven't made me feel better at all, and they haven't made me any worse. (Except the 2 day headache). I have not herxed. Everyone always talks about herxing. I just feel like my treatment isn't doing anything.

Luckily, I have an LLMD appt next Friday! I guess I will ask them to kick it up a notch. Lol.

I'm just really confused and wondering if I really do have Lyme? But if it's not Lyme, then what is it!?!

Utalgal how many drops of Samento and bandoral are you taking? Do you take it twice a day?

After I started treatment and before my husband got tested thru Igenex, he did the drops of Samento, starting at one drop 2x day for 4 days, and slowly worked up and when he got to 5 drops it hit him, he herxed pretty bad.

So maybe you haven't gotten enough yet to herx or your body is detoxing properly so your not noticing it. Or the 2 day headache was it.

At least you go back next week and he can maybe tweek it.

That must be very confusing!

Did your llmd say they think it is lyme?

sounds like lyme and as you know the tests are not always accurate but I can see why it is discouraging for you.

Let us know what your llmd says about it all.

Utah although it could be just Lyme my llmd and other llmds that I have read

say that when neurological symptoms are out of proportion with other

symptoms think bartonella or BLO (bartonella like organisms). This is the

route my llmd is going down. Doxycyline did hardly anything for me and

rifampin gave me a good herd (muscle pain, exhaustion, worse headaches). I

am only on week 2 of rifampin but I am looking positive about it.

Yes, I have read that, too about suspecting bartonella, if your symptoms are nervous system dominated. I have the nerve vibrations in my body (one of my first symptoms), nerve pain upper left side of body, had anxiety, have brain fog, and also have rib pain and foot pain...which I believe could all be bart.
No headaches, though.

What neuro symptoms do you have, utahgal?

Revive - you're doing 400 mg of mino? Isn't that double the usual dose? I thought the dose was 100 twice daily (200 total)

hi Utahgal-

Just tell your llmd what you have been telling us. That you are confused if your symptoms are even lyme. That so far the treatment is not working. That youhave heard of rifampin for bartonella and do they think you need that and have bartonella? Just tell them what you really feel and they will help you out. And really, the only reason the rifampin herx was hard for me was because it actually was working to bring up and then bring out whatever it was. Don't be too scared of the rifampin- it is better than not treating! And it eases up pretty quickly.

Your llmd will help you- and as I said- if you feel that the ND you are seeing isn't as good as you hope ( even though I think they are very good) just make your next month appointment with the main dr- and they will fix you up.

Sometimes it helps to write down your list of concerns before the appointment so you can make sure you remember them all.

My LLMD never mentioned babesia. She just mentioned erlichiosis and anaplasmosis. She did run labs for the coinfections. I'll find out on Friday. But I read that coinfections labs are also unreliable.

All I know is I am not any better on my current treatment plan, so something needs to change.