Help with Protocol + Questions

Hello. I'm putting a protocol together to self treat and I just needed some input on all of the meds that I'll be using.

This is for neurological lyme, I suspect I have bartonella as I have seizures and seizures are connected to lyme and bart, haven't heard of anything regarding babesia I don't think I have it anyway... I have the horrible back of head headaches and a stiff neck a lot of the time. Burning feet an pain in heels too.

I live on welfare, so I have very little to spare most of the time, but thankfully I've managed to get at east 3 months worth of Ceftin on sale, having sold a few things.

I will be using: - Ceftin, 500mg x 2 daily
- Minocycline 100mg x 2 daily
- Rifamicin 300mg a day (may move up to 600mg as tolerated.)
- Tinidazole 500mg x 2 a day for 2 days every 2 weeks to a month or so for persisters

Will this be enough do you imagine? I know ceftin penetrates the BBB which is good, I also know that Minocycline penetrates the CSF pretty well and I have a lot of neurological stuff going on. Also I am aware that Rif and mino are used to treat bart and that they work on lyme is a bonus here.

Also a few questions, neuropathy can get worse as part of herxing, right? Along with inflammation etc? Can someone just summarise herxing for me again briefly? That'd be really great and I'd be very thankful. So far I have been experiencing a little more neuropathy since starting the ceftin. I'm waiting on the rest of the meds to come in the post.

My memory is absolutely atrocious at this point. I've had a really bad few months. I took an od and tried to drown myself at the start of the year and so self treating is the way I'm gonna have to go at this rate. Just hoping for some insight and support here.

Thanks guys.

Your sleep may be disrupted.

Don’t freak out when the Rifampin causes your urine to turn a deep orange/brownish colour.

Girlie - What causes the sleep disruption? Is it just rifampin affecting the diurnal cortisol cycle? Does taking hydrocortisone help?

I sleep for a good 4 or 5 hours straight and then I'm woken up...with a low level anxiety attack. I usually get back to sleep after that.

But I've heard others complain about poor sleep on it.

Cignet said...
It's crap eh Girlie, missing out on the sleep? I miss the days where I used to sleep for a solid 12 hours. There's no winning, but sleep felt like a comfort blanket, just tune out, no pain or bs to deal with... Of course, normal life would be ideal!

What % are you at now, would you say? Just curious. I'm sitting at maybe 15 - 20% hoping to gain maybe 10 or 20% so that I don't feel so awful anymore and get rid of the seizures, nerve dysfunction. Fatigue I can live with, this stuff is something else.

Also have you heard from Jova ever since?

I used to be a great sleeper. I was a professional napper, too... lol

I miss having a good feeling going to bed. I’ve had some really bad sleep issues over the past several years - especially in the beginning.
Kinda traumatized me.

My progress?
Going by numbers - I’d say Im close to 90% better.
Had approx 35 symptoms and have maybe 5 left.
30/35 - so I guess it’s only 85%

- POTS
- nerve pain left scapula, arm and hand
- head pressure (not constant)
- shivering internally
- waking anxiety.


May have forgotten one or two that are more sporadic

If I could get rid of the nerve pain symptom I’d be a happy camper.

It was a few months before I noticed improvement.

My symptoms never leave quickly.
They ever so slowly diminish - ie they improve in tiny increments over a period of time and then I realize they’re gone.
I used to chart their severity daily - 3x a day because mine fluctuate during the day.
But I stopped charting because I was focussed on my symptoms all day long.

Spacing probiotics and abx by 2 hours on either side is minimum.

I take a final dose of probiotics in the evening at least two hours after the antibiotics so it’s left alone all evening and through the night.

The thing I noticed with mino was that it killed bartonella, with the most obvious symptom being dark urine (bilirubin). This usually happened within 24 hours.

10 am and 8 pm should be fine.

I’m usually taking mine at 8:30/9:00 am and between 6;00 and7:30 pm.

Didn’t know that mino is known for neuropathy - is it a low occurrence or more often?

I did know about the intracranial hypertension and teeth staining

Re: food with Rifampin.


I take it, wait 20-30 minutes then eat.
An hour before is prob ideal but I don’t want GI problems - so I split the difference -

I do wonder how much isn’t being absorbed BUT I’m weighing in at 130 lbs and this same dosage is given to a 170 lb man - so losing a tad prob doesn’t matter??