IV Rocephin

Hi All,

Just looking for some advice. I've been on IV Rocephin for just about 4 weeks (5 days on and 2 days off to spare my gal bladder). I've been taking Flagyl pulsed two days a week, Ceftin and Azithro 5 days with the Rocephin. I've been treating for a really long time, finally got a picc line after many years. So here's my question for any of you who've been on Rocephin, did you herx on it? I haven't really herxed but I guess some of my symptoms have gotten more intense. Mostly my throat. My swallowing has gotten weak again and I have a sore throat - not the kind of sore throat you get with strep or a cold virus but my muscles in my throat are really sore as is the back of my throat. My neuropathy is more intense in my foot and tongue. One symptom that has subsided quite a bit are the palpitations and weird adrenaline surges that made me feel like I was on a roller coaster. They are way less intense which make me so happy.

Do you guys think it's working on the lyme but bringing bartonella out? I tested positive for BLO and Lyme 6 years ago, no babesia (I don't have a spleen so was happy not to get that one!). I have a phone call with my doc tomorrow, do you all think I need to try 4 more weeks or what?

Any advice is welcome, thanks ya'll!

Thanks Girlie for getting back to me so quickly! I'm not on Ursidol because (according to my doc) since I'm on the five days on /two days off Rocephin I don't need it. I did ask for it but he said no.
I definitely need more treatment as you've pointed out since I'm not symptom free. I was wondering if anyone thought that based on what I described if what I'm experiencing is more bartonella related. I've never been able to figure out what symptom corresponds to what infection - besides the bottom of the foot pain being bart that I had years ago. Also, do you all think I should push for 4 more weeks of the rocephin? Even though I'm not sure it's doing much.
In the past I've treated bart with buhner's protocol, A-bart, and rifampin, flagyl, and mino. I've been on abx and herbals with some breaks for almost six years. I've had times where symptoms where really mild and then something traumatic happens and they flare.

I don't think I have babesia as I don't have a spleen and if I had gotten babesia I probably would have ended up in the hospital, so all my LLMDs over the years (3 of them) didn't think I had babesia and I tested negative for it through Igenex.

So what do you all think? My llmd wants me to go on the full Cowden protocol after this (I've tried a few Cowden herbs and they didn't do anything). BVT sounds really interesting to me, maybe Rife?

Well regarding Bartonella treatment - I was on Rifampin and mino or Biaxin for over a year.
Then I tested positive for bart via pcr test !!!

I have since gone to Dr J clinic and have treated Babesia extensively (first on my own and then another 5 ish months with dr J (double dose of Mepron)
And then went on Persister/bart treatment and the Rifabutin hit me hard - like I had never treated bart before.
I think there’s two reasons for this:

1) Maybe the Babesia was preventing bart treatment from working.

2) The Rifabutin is much more effective - I really herxed on it.
For the first time in over 4 years of treatment I had a fever and high heart rate as herx symptoms.

Four weeks of Recephin is a waste of time and money. My LLMD said to expect the worse herx from Rocephin on week four. I never had a major herx while on Rocephin for 13 months, plus another 3 months of IV Doxy. Keep on the Rocephin for as long as you can afford it or your insurance covers it. I think it would be way too early to transition to herbal protocol only or you will back slide faster than you improved.

I started out for the first two months with IV Rocephin once a day x 7 days a week, then switched to 4 days ON twice a day, then three days OFF. I took Actigall the whole time.

It took me over six months to start to see improvements while on IV, and I was treating Babs in parallel, and pulsing Tindamax two days a week as well.

Girlie said...
Well regarding Bartonella treatment - I was on Rifampin and mino or Biaxin for over a year.
Then I tested positive for bart via pcr test !!!

I have since gone to Dr J clinic and have treated Babesia extensively (first on my own and then another 5 ish months with dr J (double dose of Mepron)
And then went on Persister/bart treatment and the Rifabutin hit me hard - like I had never treated bart before.
I think there’s two reasons for this:

1) Maybe the Babesia was preventing bart treatment from working.

2) The Rifabutin is much more effective - I really herxed on it.
For the first time in over 4 years of treatment I had a fever and high heart rate as herx symptoms.

I took rifampin and biaxin, and it did nothing to bart. The bacteria were completely resistant to it. Minocycline did work for me, and flagyl and bactrim seems to have killed off the rest of the bart.

Bartonella is frequently resistant to antibiotics but once you find something it's not resistant to, it dies pretty quickly. If you've got persistant bart, it's probably hiding in borrelia biofilms. I don't think babesia can do that?

tickbite666 said...
Four weeks of Recephin is a waste of time and money. My LLMD said to expect the worse herx from Rocephin on week four. I never had a major herx while on Rocephin for 13 months, plus another 3 months of IV Doxy. Keep on the Rocephin for as long as you can afford it or your insurance covers it. I think it would be way too early to transition to herbal protocol only or you will back slide faster than you improved.

I started out for the first two months with IV Rocephin once a day x 7 days a week, then switched to 4 days ON twice a day, then three days OFF. I took Actigall the whole time.

It took me over six months to start to see improvements while on IV, and I was treating Babs in parallel, and pulsing Tindamax two days a week as well.

Thanks Tickbite, that's really helpful information. What were your worst symptoms and what did the iv help clear? I agree with you about the herbal protocol as I've been on them before (a number of them) and I didn't get better only stayed the same.

Quin said...

Girlie said...
Well regarding Bartonella treatment - I was on Rifampin and mino or Biaxin for over a year.
Then I tested positive for bart via pcr test !!!

I have since gone to Dr J clinic and have treated Babesia extensively (first on my own and then another 5 ish months with dr J (double dose of Mepron)
And then went on Persister/bart treatment and the Rifabutin hit me hard - like I had never treated bart before.
I think there’s two reasons for this:

1) Maybe the Babesia was preventing bart treatment from working.

2) The Rifabutin is much more effective - I really herxed on it.
For the first time in over 4 years of treatment I had a fever and high heart rate as herx symptoms.

I took rifampin and biaxin, and it did nothing to bart. The bacteria were completely resistant to it. Minocycline did work for me, and flagyl and bactrim seems to have killed off the rest of the bart.

Bartonella is frequently resistant to antibiotics but once you find something it's not resistant to, it dies pretty quickly. If you've got persistant bart, it's probably hiding in borrelia biofilms. I don't think babesia can do that?

Thanks Quin, really helpful. I should see if I can get back on Mino as I felt that was really helping. I had to switch docs and this one doesn't like mino. Maybe I can just order it online. Do you know if those sources are good? I'm talking about the one from India that I've heard others discuss. And this question is for anyone who's used them.

Kitkate said...

Thanks Quin, really helpful. I should see if I can get back on Mino as I felt that was really helping. I had to switch docs and this one doesn't like mino. Maybe I can just order it online. Do you know if those sources are good? I'm talking about the one from India that I've heard others discuss. And this question is for anyone who's used them.

I got mino from here: https://www.inhousepharmacy.vu/p-265-minomycin-100mg.aspx

It worked for me, but Girlie says her infection was resistant to it. So YMMV...

Kitkate said...
Quin,
That's intersting about the depakote, isn't it an anti-seizure med? Did your doc prescribe it? Thanks!

Yes, it's an anti-seizure med with antibacterial effects. It can kill certain bacteria. See eg https://www.ncbi.nlm.nih.gov/pubmed/12755481

I found it effective against borrelia (Lyme) but it did not work against bartonella.

Quinn - I never said bart was resistant to mino.
I said that mino isn’t “enough” for bart.
I am on mino now.


Most experienced llmd’s don’t use mino as the abx for chronic longstanding Bartonella .

Girlie said...

Bart didn’t go quickly for me - all my symptoms slowly drop over time. I think there are other factors that come into play:
How long you’ve had bart
What coinfections you have with it and of course what you use to treat it.

I think if people use Rifabutin - in a lot of cases they will be more successful

I was able to get rid of most of the active bart infection in about 3 months with minocycline. So not that quick, but it's not quite as persistent as borrelia.

The real problem is that I suspect bartonella hides in the biofilms created by borrelia. When I killed off the borrelia with valproate, then the bart came back.

tickbite666 said...
Kitkate,

I had combo of both neuro and arthritic sx. Oddly enough my long term IV protocol while fighting Babs in parallel resolved my joint pain and stiffness first, and I plateaued at around 50%. It wasn't until I switched protocols to fight Bart for the second time that I saw significant neuro improvements.

I'm steady at around 90% for the past year or so, but if I stop or try to pulse down to 2 week ON and 4 weeks OFF I backslide. Right now we are keeping abx full time and my burner herbals full time, and trying to fine tune items to get me to 100%; or just reduce items and find a 90% maintenance compromise until a cure is discovered.

Interesting.... Makes sense that Dr. J treats babesia before bart then....

Tickbite - are your remaining symptoms tolerable - if you never get to 100% but can maintain the 90%?

Mine aren't. If I was to go by 'numbers' I'm prob at 90% now.

Have you tried 2 weeks on and 2 or 3 weeks off?

I'm currently on 1 week on and 3 weeks off. Week 2 off right now...we'll see how it goes.
(The week on is 4 days of abx)

I don't think I could have taken the Rifabutin daily....I only took it M/W/F week 1 and then M/T/W week 2 followed by 2 weeks off. Well, that was the prescribed schedule. The first 4 rounds (maybe 5) I had to postpone the week 2 and start it a few days late...in fact the first round, I took week 2 off and did the M/T/W on week 3.
It just about killed me....(or so I thought at the time) :0


Do you get a fever when you herx? I had never had an increase in temp until the Rifabutin. Plus it sped up my heart rate.... and the body AND head pain.... I was a hurting zombie for several days...

But, I do believe it was a typical herx...because the first cycle was the worst - close to going to the ER.
And then they got slightly better each cycle.