I need to figure out the best timing. I can take a month off work, and should schedule it when I'll most need it. I had assumed that I should take the month off at the beginning. But in searching old posts, I saw someone who said she spent the entire first month off of IV Rocephin in bed while her brain adjusted to the rocephin leaving her system.

So did you have your greatest difficulty with IV Rocephin (a) adjusting to it at the beginning, (b) during the entire treatment, or (c) when you went off?

I really appreciate your input.

you will herx hard. the more bacterium the heavier the herx. hence harder at the beginning than the end.

actigall is good to take defend against any gallbladder problems, milk thistle as adjunct as well.

Hopefully you will not have a problem with it. My grandson had Rocephin and it worked for him but not my daughter. You have to try meds and not all of them will work and that is when you change again. Keep trying until something works.

I'm not quite clear -- Do you attribute your husband's lower Bowen count to the IV, or to the Bicillin shots and Ketek? Or both?

Thank all of you for the information you've shared. You all know how hard it is to decide the best course when so much is unknown!

Also, if I ran the IV too fast, I sometimes had a reaction, i.e., breathing problems, extreme fatigue and ringing in ears, so ended up infusing over about an hour each night.

I would say it was the IV. Now the Bicillin shots are keeping it going. His doctor wanted the Bowen test done after the 6 months to see how he was doing. Great surprise when it was cut in half. As I said, he continues to work. He gets tired but that is part of everything.

Since the nurse did not want to keep an IV in longer than 6 months without getting a port, he had to go off the IV. It all seems to be working.

Hope yours does too.

zipzip, I forgot to answer your question. 10 weeks is the plan.

The first three months were brutal.

We have maintained and continued progress because we were on orals throughout (combinations for co-infections, and to help prevent cyst formation).
We both had Bb, Mycoplasma, and Bartonella. I also had Babesia.

I went off last summer, and have maintained neurologically..with extremely aggressive alternative focus on immune strength, yeast, parasites, liver, gall bladder following immediately, and continuing to date.

Have done herbal therapies for reproductive ststem, intestines, the other organs and yeast.

I believe that is the reason I have continued to progress. The brain has stayed clear, and the physical symptoms are difficult to identify as to whether they are sequestered Lyme, or toxins and organ sluggishness-related. So...I'm maintaining alternative treatment for both these possibilities..I hope to know in time.

Mo

You never know until you get started - I had more improvement with the Rocephin than anything else I've tried so far. Herxed really bad on the Ceftin/Tindamax and had to back off a little. Hopefully I'll see some more improvement with it.

I improved dramatically on my first round of Rocephin until I hit a plateau, then we switched to Ceftin. I then got pretty sick from Systemic Candida & had to stop abx for awhile. During that time I did relapse. But, I think that is because we missed Babesiosis. I started Mepron/Zith and IV Rocephin again and saw immediate inmprovement - like within 4 days. I would have stayed on the Rocephin but after 16 weeks my vein just gave out and I had to have my PICC removed.

So, yes, I would say I really improved on Rocephin and have not relapsed since stopping it last July. I am certainly not cured but I am 50% better than I was before Rocephin and can think and speak more clearly.

Got to hit the co-infections and clean up the Candida for it to work - my opinion.

First two weeks kinda bad, then 3-5 severe herx and hospitalization.

Then mostly steady getting better. 2 mo's of IV

Orals for 6 months after that.

No lyme symptoms for 4 years.

Relapsed this past winter, maybe from steroid shot and/or untreated babesia and Ehrlichia AND bartonella. All three of them in one tiny nymph tic in 1991.

Treating babs with mepron/zith. Feeling pretty lousy all the time now.

hoping for more remissions!

It sounds like I should plan my time off at the beginning from the majority's experience.

And thank you for the reminder about treating co-infections first!