Since I started on IV most of my symptoms went away immediately and I am feeling better than I have had in a long time. The only symptoms that I have now are an achy hip and knee. My LLMD had told me that I should expect a major flare up within 4-5 weeks of starting treatment. Since this has not happened I am starting to suspect that the medication is not really working.

Background: I was diagnosed with lyme and babesia in April 2003. I also have ehrlichia. I don't know went I got lyme, but my doctor thinks that I have had it for many years (maybe over 30 years). Since then I have been undergoing treatment (including rocephine IV) and mepron. Every time I start on a new medication, I immediately feel better. But after 6-8 weeks the symptoms slowing start to return and getting more intense, and eventually I am worse than before. So the doctor shifts to me another medication. To this day, I have not had a herxheimer reaction or flare up.

I have the same questions you do.

In fact, I was also diagnosed April 2003, but probably have had LD for 13+ years.

My LLMD closed his practice in September.

On my first visit, he told me I would need to be on ABX for at least 18 months.

Treatment:
Zithromax
Rocephin 180 injections l GM daily & Flagyl
Mepron & Zithromax
Zith & Flagyl

He told me at the last visit (which I did not know would be my last visit) all I needed was more Zithromax and then maybe eventually just Flagyl.

I'm still sick. I'm unable to work. My nerves are fried. I am not functional. I'm thankful my hard, daily pain is almost gone.

I have neuro lyme. The Zithromax only keeps the pain of head, ear & face at bay. No progress with other neuro symptoms. He refused my requests for Minocin. He said you just got off Mepron & that's for the brain. Forget Minocin.

Please, don't anybody kill the messenger here. I'm just repeating this LLMD's words at my last visit.

He said, "Rocephin drives Borrelia into the cystic form essentially putting you in remission so you can function."

I did not know that when I went on Rocephin. But I wanted to have my chance at it. I'm still glad I did the Rocephin. It does go to the brain.

My brain is totally broken.

I did not have a therapeutic daily dose of Rocephin which is 2 Grams; I got 1 GM daily. My problem was not getting a therapeutic dose & not taking it for a long enough period of time.

If there was a "TRUE" standard of care for this disease, none of us would be on this board. We'd be well.

I found a new LL/FNP (Family Nurse Pratitioner who is a member of ILADS).

I told her I desperately needed ABX for my brain. I had plateaued on Zithromax.

I asked for Doxy.
I asked for B12 shots.
I asked for Rx Amantadine for dopamine for my brain; it's an anti-viral & Dr. B.'s Guidelines say it enhances absorption of ABX.

She's testing me for Bartonella at my request. Results not in.

She prescribed:
Doxycycline Mono to ramp up to 400 mg daily.
B12 injections 1 cc DAILY via insulin needles
Amantadine 100 mg daily
As I said------awaiting Bartonella results.

I do not know if she'll treat Bartonella with a negative test.

This has been my experience thus far.

I've researched for years trying to
find the cause of my disease & thought I had researched Lyme extensively after my confirmed diagnosis of LD.

However, I did not learn enough about LD until I joined Lymenet in July.

To me, this is where the rubber meets the road, so to speak.

Sorry, but I do not know the answers to your questions.

The question is: Are you functional on the Rocephin? Others have warned of crashing after Rocephin is stopped.

So be absolutely sure your LLMD will treat you very aggressively with orals or Bicillin injections after stopping Rocephin. You'll need something to keep you from losing ground.

I was much better on Rocephin, but still never 100%. By that, I mean-----unable to work.

So, my first l8 months of treatment was essentially to get me out of pain.

Just started Doxy (which goes straight to brain & nerves) & I'm back in the pain mode again. It will take a while to get up to 400 mg of Doxy because of the pain.

That surprises me because I THOUGHT I had already experienced the initial bacterial die-off.

I erroneously thought my pain days were over. Not so.

I believe the Amantadine will help with the insomnia, but the pain can keep me up.

Anyway, I'm still killing a lot of Bb off.
Eventually, I hope to graduate to Minocin, but that's very strong. I don't think I could handle it right away.

When Minocin plays out, I suppose I'll go the Bicillin route.

Now if she adds Rifampin to my protocol that will change the picture again.

Just a drug warning for you or other readers:
Never take Flagyl & Doxy together. The
LL/FNP told me that & many on the board have warned about that.

Well, I hope I haven't thoroughly discouraged you.

That was not my intention. I am trying to give you an honest reply.

In my opinion, I would take the Rocephin & not worry about not herxing. I can't remember if you're on a cyst buster like Flagyl, but those are prescribed together.

Sooner or later Rocephin will be removed either by your LLMD, insurance company, lack of funds, or gallbladder problems.

I had a gallbladder attack in the ER, but they evaluated me; got a shot of Demerol & Rx for Bentyl.

I notified my LLMD who had me go off the Rocephin to let this inflammed area "cool down". He put me on Ceftin temporarily.

As for herxing vs. not herxing, it depends on the person. It's all so variable.

Obviously, I do not have all the answers. I hope others will help you with better answers.

It seems to me persistence is the key. The question is: are you functional yet & can you stay that way?

Take Care,
Jan

The question is, are you improving? You said, yes you are, so that is GOOD! The end result of illness is recovery, not herxing!

BUT, with rocephin, get on a cyst buster.

getting better with no herx is good... how most of us envy you...

when i was on rocephin it took 7 weeks to start to work

once started working no herx just got better ... (i was taken off too soon and relapsed but thats a whole nother story)

if you herx their is no particular week when it happens and it doesnt necessarily have a scehdule.

sorry reply short hope it helps some.

I think I have had lyme for many yrs as well.