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Neuro Lyme - IV Rocephin - Starting today

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Posted 2/8/2017 12:28 PM (GMT 0)
Hello friends,

It's been a while since I wrote. My condition has reached a plateau, and the only thing left to try is IV rocephin for a month. My doctor said that this is the most aggressive treatment available. After that, we need to wait because the symptoms can take a while to subside.

Some people get better, some people don't. I am feeling well today. I think the oral antibiotics have been reducing the parasite load because the flares are far and between, and the intensity is much lower. So this could work.

For those with neuro symptoms (meningitis, neck pain, confusion), I've been meaning to post the medication I take for pain that works for me, it's called Fioricet.

I am trying to stay positive. I searched online, but couldn't find any reassurance. Anyway, keeping hope alive.
Posted 2/8/2017 1:36 PM (GMT 0)
IV Rocephin is not a magic bullet and should be used as a last resort only for the worse cases. I did IV rocephin for 13 months followed by 3 months of IV Doxy. It did resolve my Lyme joint pain and stiffness, and we thought we were also fighting a Mepron resistant strain of Babs. At one point in 2012 was taking oral Zith, Bactrim DS, Mepron (double dose) and pulsing TindiMax 2 days per week, with IV Rocephin twice a day for 4 days on 3 days off, and taking Actigall.

I hit a plateau at about 60%. Neuro issues were my main sx. I dropped Mepron and the IV, started Crypto and other herbals, then took a hard hit at Bart with Mino, Plaquenil and Rifampin that got me to 80%. I then ramped up herbals and weaned off ABX only to relapse a few months later. After another two years of ABX I'm back to 85 to 90% and hitting virals.

I agree that some get better... some don't. I can live at 90%, Maybe that's as good as it gets with permanent damage from the infections and toxic Rx. Its a long battle, but IV for only 30 days may not be worth the cost and risk.

Good luck to you.
Posted 2/8/2017 1:40 PM (GMT 0)
I'm sorry LongJourney that you have to do such an aggressive treatment. I pray it goes well and it kills them buggers!
Posted 2/8/2017 1:49 PM (GMT 0)
Hang in there. Also wondering where I should be headed with Neuro Lyme treatment.

Keep us posted 😘
Posted 2/9/2017 12:11 AM (GMT 0)
Please keep me posted on how this goes. I am seriously considering this route.

Are you taking biofilm busters while you're on this medication?

Does anyone know of docs in New England (or MA) who would prescribe this type of thing?

Good luck!
Posted 2/9/2017 1:13 AM (GMT 0)
I did about 16 weeks of every 5th day IV Rocephin. Mon, Fri, Wed. I felt like it helped a lot and so did the other people that were on the same schedule that I was.

Lyme isn't my biggest issue so my Bart a Babs symptoms started to really flare but overall I'd still consider that 16 weeks well spent. You need to be on something that protects your gallbladder when on Rocephin.
Posted 2/9/2017 2:08 AM (GMT 0)
Im on month 10 pulsing roceph ..i expected fireworks an got sparklers...yes get actigall..
yes it does help joint pain ...spirochetes are still intercellular even with iv zith....
Eyes brned a bit from herx ...
are you doing picc or port?
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