When should I start feeling improvement?

I started treatment in September. So far I've tried:

Mino and malarone for 1 month
Doxy and flagyl for 3 weeks
Mino and flagyl 1 week
Mino and rifampin for 2 weeks

I also did Buhner's herbs for the past month! (Jap knotweed, houttuynia, Hawthorne, sida acuta)

I've made 0% improvement. Bummer. Maybe I should consider a PICC line. I've had untreated late stage Neurolyme for 6 yrs. maybe orals are not enough. Shouldn't I have noticed something by now? Should I ask my LLMD about a PICC?

I would just feel mentally better if I at least made 20% improvement by now. I feel like my meds aren't doing anything! And the Buhner herbs haven't helped at all!

have you have any herxing?

Your Dr. definitely has a different approach than mine. He is changing things up a lot.
What was the reason you went off mino after one month and went on doxy? Then back to mino?

I'm not saying his approach isnt good...I'm not one to talk...as my progress has been slow...

I started doxy, after three weeks added zithromax. (self-treating). Stayed on that combo for a month, and then saw a LLND who stopped both and put me on ammox. After a month on ammox, biaxin was added. Stayed on that combo for two months. Then ammox was discontinued and ceftin was added. I am approaching four weeks on the ceftin and biaxin...my appointment is next week...we'll see what he suggests. I'm thinking he will want to add rifampin.

Utah - sounds like you've been herxing...which means it's working...and you're detoxing like a madwoman?

I tested negative for Lyme with the regular lab corp test.

Then I tested IGenex IND and negative for CDC. But, as you can see in my signature, I clearly have some positive Lyme bands. LLMD says it's definitely Lyme.

Girlie.... I had no reaction to mino and malarone combo. When I switched to doxy and flagyl, I had a huge mental meltdown! Severe anxiety, crying jags, depression, I just felt crazy! I guess that was a herx. I thought it was the doxy, so I stayed on flagyl and switched back to mino. It still was bad, so I dropped the flagyl and felt better. So the flagyl definitely was the cause!

So now I'm on 200 mg mino and 300 mgs rifampin. I just don't know when I should expect to feel something.

What else should I do? Ask for a dose increase? Switch orals? Start a PICC?

Maybe I don't have Lyme? My IGenex test was indeterminate.

Utahgal, you do have Lyme if you had a herx reaction. There is no reason to doubt your Lyme diagnosis with those positive bands. Sometimes it just takes awhile to find a treatment that's right for you.

Three months may seem like a long time but in the grand scheme of things (especially since you've been sick for years) it's not long at all.

Utahgal —

I agree with a lot of the posts here—really good supportive info. I do think you might just have to give things more time and that is so hard to do sometimes—especially when you don't feel in control over your emotions or thoughts.

Have you tried slowing down a little bit—all the switch up so quickly is a little different. Maybe your body needs to catch up a little bit. You LLMD is likely trying to understand what would provoke a response so that does make sense. But if you're not feeling any relief at all from anything, you're either overwhelming your system and/or you need more time to get into a rhythm. And, as someone suggested - the worse you feel, the more you need to detox. I have no secrets to that—it's something I am really challenged by myself.

Hang in there… and keep posting. You will get through this!

-p

I have a theory....

Since you went undiagnosed for 6 years, there's a possibility that many of "your" Bb's are in cyst form. Based upon what I read in "Beating Lyme", that's one possible explanation for a low antibody response.

Since Bb's can only be killed while in the bloodstream, yes, abx will kill what's in the bloodstream when we start treatment.

However, we need to wait the 3-6 wks. it takes for additional Bb's to come out into the bloodstream to replicate. In the meantime, they hang in our tissues and nerves and cause big trouble in the form of ongoing symptoms.

I think it was Horowitz's book that said Bb's can lay dormant in cyst form for as long as 10 months and then they HAVE to come out to replicate.

It's entirely possible that your first month of treatment was successful in knocking down some Bb's and you didn't feel anything because of your extensive detox protocol.

Flagyl is a cyst buster and I think *that* explains why you herxed so badly on it....cysts were burst open and your body was flooded with toxins as the antibiotics killed the Bb's.

It seems that many of us deal with ongoing symptoms because we haven't just yet healed from Lyme....and then there is an exacerbation of symptoms during a growth cycle and/or when the meds regimen is switched around.

This all makes sense based upon what we know about Bb's.

I do believe your current regimen of antibiotics is doing something because, most likely, there are some Bb's in your bloodstream. I think you haven't experienced herxing from that die-off because, once again, you have been detoxing like a madwoman from the get-go and are keeping up with the toxins being released.

It seems the body's bacterial load needs to reduce significantly for us to experience improvements. With the timeframes that are inevitably required for abx to kill slow-growing Bb, it's going to take awhile for that bacterial load to be reduced - especially in people with long-standing, untreated infections.

Heck, you know I started treatment right after the tick bite. Yes, there was a 6-wk interruption with the treatment since my PCP didn't recognize as Lyme the couple of mild, transient symptoms I reported to her after going off ABX (and she was never convinced I had Lyme).

On Thursday of next week, I will be "celebrating" 3 months of treatment with my LLMD. I am still dealing with symptoms that I did not have when I first started treatment. I don't call that "improvement". After much research, I understand why it takes so long. It sux but it beats the alternative.

I, for one, am not interested in a PICC line. I've read enough stories on here to understand the logistical challenges aren't anything to be taken lightly - let alone the risk of infection. It seems appropriate to give orals a chance since there are success stories of people taking orals for a few years and healing.

It's clear you have Lyme because you herxed - there aren't too many infections that cause herxing. The fact that you herxed means you ARE on the right track.

And, based upon what I've read, not everyone herxes extremely - especially if they're able to keep up with the toxin load by an effective detox protocol.

IMHO, it all boils down to what others have said - give it more time.

Post Edited (cd3764) : 12/13/2014 5:31:53 AM (GMT-7)

Sayya and Happyjo...

I know what you mean. It's very hard to swallow so much stuff (abx, vitamins, herbs.....) everyday, ALL DAY, and not see any improvement. I just need some kind of sign that it IS working, then I could be more patient.

I thought by now, 3 months of treatment, I would feel a little better. But I don't.