I am one month into IM Bicillin 1.2u 3 x weekly. Also on pulsed Flagyl, Minocycline, Rifampin and Plaqenil, though my LLMD has me dropping all orals except Flagyl in another week.
I have been treating with orals for 2 years, little improvement. This stuff is so ingrained in my nervous system that it is hard to wrap my mind around ever living without the multitude of neuro symptoms I deal with on a daily basis.
Anyway....how patient should I be on the Bicillin until I try something else? (IV, most likely - I realize this is not necessarily a "fix" either - but I don't want to just live this way, gotta try something).
I felt pretty awful the first couple of weeks on the injections. Now I am just at my "average awful." No better, no worse. My over-active nervous system is always there, to varying degrees.
Any thoughts? Thanks for input.
TS
Posts: 566 | From West Coast | Registered: May 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
You should be very patient.
The first month I felt so-so, and had a few minor herxes like joint pain, some tearfulness, and headaches. Those symptoms were mostly after the first shot or two. But during this time I was only doing 2 shots per week.
Then, the second month I went up to 3 per week, and I felt more tired, more like crap. And I was like, "maybe this is side effects and it's just not working." I really thought about stopping it.
It took until about the 4 month mark 'til I could tell vaguely that it has been helping. And I do feel that it has helped me. But it happens so slowly that you almost don't notice it, unless you look back, then you realize that you are slooooowly getting over Lyme.
Maybe you feel like poop right off the bat from starting stronger than me, and maybe you'll see progress at the 3 month mark instead of 4 month mark, because when you think about it, I was a month behind you, and started 3/weekly in month 2.
Anyways....I think for Bicillin, it is a long-haul kind of thing, and you are WAY too early to be able to tell if it's going to be a good thing for you or not.
I hope that is reassuring, not frustrating.
I have heard of quite a few people that credit Bicillin with curing them. So I think that you just need to hang in there for a few months, and hopefully you'll start seeing good things. But don't expect them right away.....it isn't that kind of drug. Works very slowly.
I would recommend LDN for people not making progress (www.lowdosenaltrexone.org for info). I feel like once I started that, my immune system really started working "with me."
So anyways, I felt awful too in the stage you're in, but am doing better now. Currently in month 11. I feel like right now, it's not really doing much either way except maintaining where I'm at (have made some modest progress on it), so I am just gonna keep doing it until I'm totally better. I feel like it's controlling my Lyme, and now I'm basically just dealing with Bart and babesia. So once I conquer Bart and babs, I'll stop treatment and stop the Bicillin then.
But I feel like my Lyme is quickly becoming "under control." So it does get better.
Posts: 4590 | From Midwest | Registered: Jun 2008
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WildCondor
Unregistered
posted
Very patient indeed. It took me a year of Bicillin before I started to feel a lasting benefit. Stay the course and do not expect a quick cure.
Bicillin plus Flagyl will be a great protocol to be on, if you add Biaxin it is even better.
Make sure you take Florastor and keep at this, it does work but it takes a long time and determination and dedication to the protocol.
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posted
I was doing Bicillin for about two months: wasn't feeling any better. Dr H took me off of it this week, and switched me back to Ceftin. Now I am wondering why he did that...
Posts: 360 | From New York | Registered: Oct 2009
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WildCondor
Unregistered
posted
That is odd because you can take them both at the same time. I took Ceftin 3,000 mg with 1.2 MU Bicillin LA 3x per week plus 2,000 of Biaxin plus Pulsed Flagyl and it was one of the best protocols I was on.
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posted
I was just put on Bicillin LA 2x per week, Rafampin, and Nystantin. I'm starting Mon. I was glad to read this thread. I know I need to be patient. Dr W put me on this until I get in to see Dr C. I have my first visit in Aug.
Posts: 39 | From Oklahoma | Registered: Feb 2010
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posted
Thank you everybody for your responses, it is very appreciated.
Yes, Hoosier, I am trying to be patient instead of frustrated; it's hard sometimes as I know most all of you relate.
I wake up every morning hoping to have the buzzing feeling alleviated, but no. I twitch, buzz all over inside (if that makes sense), tremor, feel uncoordinated...the neuro list of symptoms feels never ending.
The only concern I have is when I read Dr. B's protocol; I am definitely completely neuro and he says IV when that's the case. Hopefully, my current protocol will at least keep things from getting worse and we'll re-evaluate after several months to see if IV is needed.
Thanks again....it's time to go give myself a shot in the a$*&% ! TS
Posts: 566 | From West Coast | Registered: May 2008
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