posted
I have been on Rifampin for 7 weeks, Zith for 9 weeks, and did Bicillin 1.2 mil/units per week for one month. I took a two week break from the Bicillin and then my LLMD upped it to 1/2 mil/units two times per week (I've done three shots at this dose).
Do those of you that have done Bicillin feel bad after every shot? I have found that anywhere between 24-72 hours after I feel horrible. I have also had left-sided weakness crop up (to add to my right-sided weakness).
Also, on average how long to feel better on the Bicillin? I'm sick of feeling worse since I've started this!!
Thanks!!
Shelly
Posts: 292 | From UT | Registered: Aug 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Shelly,
I have done Bicillin twice now..very tough one. I made it only 7 weeks the first time, last fall.
Then I tried again in Feb (about 4.5 months now) and just did my last shot..it effects my mind too much.
I have found for myself the shots made me feel better right away, but the herxing that would follow in the days to come is very hard.
Many times I felt like I was starting over from the beginning ...early awakenings, tremors, anxiety, PAIN, new symptoms, old symptoms!
Recently I posted about the "emotional" roller coaster of it that hit me about 6-8 weeks in..cry, cry, cry. Many responded they felt the same thing.
I don't think Bicillin is the drug for me..it has helped in some ways, but not enough to continue. Some people have amazing results, I was hoping I'd be one of them.
2 shots got to be too much for me, so my LLMD took it down to one shot per week and that was plenty for me.
I have been told 6 months - 1 year is needed to see results. I did have one month on Bicillin I felt near normal and then went right back to square A.
Everyone is different..so it could work for you quickly or take a few months before you notice things are changing.
I am more curious how you handle the Rifampin? did you start that first and stabilize before starting Bicillin? How'd did you do on Rif, cause it can be hard.
Like my LLMd says, "We do what we can" and this one can be absolutely great and absolutely hard and it can take months to see results the way I understand it. But I am done for now...maybe I will try again in the future.
I recommend doing a "bicillin" search here and reading some posts.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Shelley, it took me several months to start seeing improvement and I did feel bad about twenty-four hours after each shot for at least a year. Still, I've been on it for five years and consider myself to be in remission. I just got better and better.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I've been in on since Nov and still get the 24-72 hr die-off you are describing. My LLMD says this is common and to expect it for a year. Ugh! But I do think it's helping.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I too have the 24-hour herx after a bicillin shot. My herx tends to be highly neurological, but I figure this is a good sign, as I'm wanting to target the neuro Lyme. After my first or second shot I had the worst seizure I have ever had, almost exactly 24 hours later.
I am a little over 2 months in now, and I wouldn't say it's doing great things yet, but the herxes are MUCH better. For the first three or four weeks, the emotional herxes in particular were just brutal.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
bicillin is a very good choice for alot of lymies and helps many.
it is helping me, any abx makes you herx.
bicillin has the ability to get into spaces orals cant, its similar to IV w/o the inconvenience of a picc line.
do some searches on here, theres tons on bicillin
most say they loved it
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
It probably depends how sick you are and how long you went untreated, and a host of other factors, such as co-infections, etc.
It took me about 3-4 months to see improvement in physical symptoms, and 6-7 months to see major improvement in neuro symptoms, at 2 injections per week.
In the last 3 months, my improvement has been great, and enduring two injections each week of bicillin has definitely been worth it. However, I have used bicillin in conjunction with other abx, minocycline, a macrolide and plaquenil.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Thanks for all of the great info. It makes me feel better to know that what I am experiencing is normal... Sounds like I shouldn't expect results too soon, though! My LLMD told me that I should hopefully start feeling better in a month but it sounds like it usually takes longer than that.
David - Holy cow - five years! That's a long time to take shots in the rear end! :-)
Have any of you had insurance problems covering it for a length of time? When I went to pick up my prescription for the 2 x per week, I held my breath waiting for the pharmacy to say it had been denied. Luckily, it went through fine. I'm not sure what will happen long term, though.
Thanks again!!
Posts: 292 | From UT | Registered: Aug 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have a friend who lives near me, she is on Bicillin. We spoke last night and she said they did a SPECT scan and found that the bicillin was not dispersing evenly throughout the body. It appeared as "strings" of white on the scan. Her LLMD was disappointed to say the least.
I called another (very educated) Lyme friend of mine to ask if she'd ever heard of this..I was amazed she also said when she was on it they found it to distribute very unevenly as well in her body, she said the herxing was horrible and her comment was "horrible drug". She recommended IV over it any day to me.
Before my own experience, I was excited SO much about trying it, I was sure it was the answer for me, it hasn't been yet - (there goes the ridiculous "placebo theory")
My (ILADS) LLMD said Bicillin is best when ONLY lyme is left..get the co-infections taken care of then use Bicillin to hopefully finish up killing the LD.
I am feeling clearer and clearer the further away I get from the last shot, it is good to have my brain back - LOL!
If recommended in the future again for me to try, I might...it did help some things, but not nearly enough to continue right now. I still would like to believe it works, so maybe down the road.
I definitely don't like this new information of it appearing "stringy" in scans and not distributing evenly throughout the body though.
That is something I will have to discuss w/my LLMD before I try it again in the future.
I have used Mexican Bicillin in the past, it is of thinner consistency and likely distributes very well, it was great and got rid almost all symptoms in a few short weeks I just tried it (then ran out) now that was an amazing version, way better than the U.S. version in my humble opinion.
posted
Thanks for all of the great info. It makes me feel better to know that what I am experiencing is normal... Sounds like I shouldn't expect results too soon, though! My LLMD told me that I should hopefully start feeling better in a month but it sounds like it usually takes longer than that.
David - Holy cow - five years! That's a long time to take shots in the rear end! :-)
Have any of you had insurance problems covering it for a length of time? When I went to pick up my prescription for the 2 x per week, I held my breath waiting for the pharmacy to say it had been denied. Luckily, it went through fine. I'm not sure what will happen long term, though.
Thanks again!!
Posts: 292 | From UT | Registered: Aug 2001
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posted
Lymebytes - That is interesting info. Definitely kind of disappointing... I would love to do IV, but I have a feeling insurance would have a problem with it and I can't afford it out of pocket right now. The Bicillin is costing me $80/month and I know that even with insurance, IV would be so much more. Plus, I am working as an OB nurse and I think it would be really hard to do with IV.
Anyone else heard that about Bicillin?
Posts: 292 | From UT | Registered: Aug 2001
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