I know alot of you in the U.S have been using IM Bicillin, have you had good results?
Reading through these forums their seems to be quite a few happy customers.
I don't think many people in the U.K have used IM Bicillin so I thought I would ask you lot a few questions.
Have you had good or bad effects on IM Bicillin? Did you have any nasty reactions? How long did it take for you to notice differences? (Herx's, improvments etc..) How much does it cost? (roughly)
I am going to consider asking my LLMD in the U.K if I can give this a try. I don't really want to go on I.V and Oral antibiotics as this will probably mess my stomache up - so IM Bicillin sounds like a plan.
Any help would be appreciated.
Posts: 263 | From UK | Registered: Mar 2006
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posted
I've been on Ketek and Bicillin LA since last October and have improved steadily. I've had strong herxes along the way, but I'm not sure if it's been more due to the Ketek or the Bicillin.
The only difficult thing for me about Bicillin is the actual shot...but once I started warming it up before the injection, the pain lessened tremendously.
It's not inexpensive. I pay $379 for 10 doses, although I've heard of someone getting it for as little as $279 for 10 doses. I get one dose a week, although I've read of others on this forum who get the shots 2 or 3 times a week....OUCH!
I also pay a nurse $20 per injection to give it to me. I told myself that I'd learn to do it myself, but I can't bring myself to do it. I wimped out!
I've now improved to the point that my LNP is going to change meds. I'll be DC'ing the Ketek and starting tinidazole to use with the Bicillin. The mere idea is causing me anxiety.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I was on bicillin it was increased to 2x perweek and then flagyl was added and then that was increased.
This combo did help quite a bit.
Sorry it was years ago cant rember timefraims or cost.
posted
Hello, Bicillin has helped me tremendously. I take it along with Zithromax and Tindimax, although I built up all my doses slowly.
My health insurance covers most of the cost with me only paying $40 for 10 shots (month supply). I'm not sure how this would work in the UK.
As far as side effects, I get a little light headed right after the shot but that goes away quickly.
Also, you have to be careful to rotate shot locations to keep the areas from being too tender or knots from developing. I ice the shot location immediately to keep it from becoming tender.
I have herxed from Bicillin, but I have herxed from every single antibiotic combination I have been on.
Overall, I think Bicllin has done wonders for me, but of course everyone is different!
I have a question to throw out to all the Bicillin users. I have been on it 8 months now. Has anyone been on it longer than that? I'm starting to wonder if it is time to switch to something else.
Take care, Ms. Myo
-------------------- Posts: 122 | From Texas | Registered: Jan 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
I've been on it along with Biaxin for three years and I'm not changing anyting. Chris, the generic name is Penicillin G Benzathine. It's a drug made all over the world and the international price as always under $5.00 per dose. The prices here in the U.S. are criminal. Are you allowed to import medicine for personla use? If so, this could be an almost negligible cost.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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I have just come off of Bicillin after 6 months, 3 times per week. I also had a stint of Levaquin and another of Flagyl.
I felt pretty good with the shots- but I recently developed a rash and it is believed to be an allergic reaction.
In hindsight- I was experiencing bad lower back pain and nerve pain in my right leg- so I think that my body just had enough.
I would caution Bicillin users to make note of these symptoms should you get them, as if I had stopped a few weeks ago I might have avoided this nasty reaction...
Otherwise, it worked well- only time will tell of course....
Good luck with it-
Hope- Sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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posted
I get Bicillin LA injections. Started them Feb. 2005 (2.4 million units every week for about a month, then every 2 wks. x3, then and now every 3 wks). So, yes Ms. Myo, over a yr. now.
Since November I've been on Biaxin/Plaquenil with it-best combo yet!
Got my shot today, as a matter of fact. I go to my pcp office and the nurses give it to me. They get more squimish giving it to me (they don't like injecting 4cc of thick fluid all at once) then I am getting it.
Call me strange but I've only had a couple that caused some mild discomfort and in the beginning I would get a localized lump and reddness. I rarely feel anything when I get them - not the needle or fluid - no pain sensation. I'm not sure why that is, just know it's not the norm.
I spent the weekend with another lymie (from the U.K.) at the Hope to Heal Lyme Conf. and we discussed it. I think he said he was going to check it out with his doc. I know they are continuing their holiday in Florida and won't be back till next week but maybe you could contact him.
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I started IM bicillin LA Feb. 15th.
Previously, I had been on IV rocephin and doxy, but had to stop due to fungal infection in the picc line, and C. diff.
10 days after starting the bicillin, I landed in the ER with tachycardia. I tend to "herx" 10-12 days after starting an antibiotic, and this was one bad herx!
My heart is fine now, and I am noticing improvements from the bicillin (gratefully). I had lost ground during the time I was off the rocephin and doxy.
I currently get one shot per week (1.2 MU), but at some point my LLMD may increase that up to 3 shots per week.
My hubby gives me the shots, and he does it slowly, and it really doesn't hurt much at all.
I have a co-pay of $41 per shot. Good luck!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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WildCondor
Unregistered
posted
I have always done very well on Bicillin. it is a wonderful alternative to swallowing pills. It depends on the dose how much it costs. the pharmacy always screws up my Rx for it, they dont understand the concept that there are (2) 600,000 units in one syringe, so one syringe is one dose of 1.2 MU.
posted
Wow - Thanks for all the replies, really does sound promising.
LymeDACnow - Could you PM me his details, please?
Wildcondor - Thanks, I will send you an email.
One thing I am worrying about is I haven't a clue if I am allergic to Penicillin, is there anyway I can find out? Or do I just take the shot and hope for the best?
I might be able to get it on the NHS, if my G.P is in agreement, in which case it would be free. If not I should be able to get it cheaper from my other doc.
Keep the comments coming!
Posts: 263 | From UK | Registered: Mar 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Chris, your concerns about possibly being allergic to Penicillin are understandable. Have you taken any oral Penicillins in the past? They are hard to avoid. If you ever got an injection for strep throat, it was almost certainly penicillin. if you have been given (oral) PenVee, it's a penicillin. Amoxicillin, Ampicillin are also in the same category.
If you have not had any of these orals, you might want to talk with our doctor about doing an trial course, as a pill is somewhat less likely to trigger a severe reaction. Still, because Bicillin LA is long-acting, it is also slow-acting and MAY be less likely to trigger a sudden reaction, unlike IV Ampicillin, for example.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
An allergist did a skin test on me to see if I was allergic to penicillins.
Posts: 8430 | From Not available | Registered: Oct 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I had taken amoxicillin before, so my chances of having an allergic reaction were not very high.
My PCP did have me wait in her office waiting room for a half hour after my first bicillin injection to see if I would do ok.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Chris, Saw your post while looking for "bicillin" threads and thought I'd add my son's story.
He began last October, 1.2 mu once a week, along with Plaquenil and Septra and has had very good results. He's 16 - has had Lyme/Bart since age 6, wasn't diagnosed until age 11, treated with IV Rocephin, got better, but didn't get enough follow-up and relapsed. He was very sick for the past 4 1/2 years until this regimen.
At first he would herx dramatically for about 4 days after the shot, but began to have improvement. Just in the last two weeks he has had no noticeable herxes after the injections, just feels better and better. He's up and about every day lately - after being on the couch for most of the time for the past few years.
Hope you can give it a try.
One more thing that we've been doing during this time period is B12 injections - 1 gm,about 3/wk. Not sure what is causing what, but I think it has helped, too.
David, glad to hear that you are still doing well -how's the house coming along?
Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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David95928
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posted
Nancy, Thanks. it's so good to hear that your son is so much better. It seems that for a lot of people, when they go on bicillin, they begin to lead fairly normal lives. The last couple of weeks I have not been feeling as well, mainly achey. Today I have felt much better. PM me your e-mail and I'll send you a couple of pictures. Also, there is one over on Off Topic under "Build your own house."
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
My gosh, can't believe how, when you are ready to learn something, the teacher will appear. That is this post!
I will be on IM penicillin as well in a few weeks. Plan to take tini with it, but can someone tell me the correct dose?
I will need to buy my prescription...LLMD recommended ordering from the States, but now it sounds like it is just as expensive there. I am in Canada.
Anyone know where one can purchase this with a Canadian Md prescription?
This post answered so many questions I have been agonizing over for the past week. Many thanks.
Posts: 190 | From BC Canada | Registered: Jul 2004
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In Canada, they tend to call antibiotics by different names. I need to double check this please.
Penicillin for intermuscular injection is the same thing as bicillin, yes?
Is tinazadole the drug to take with this? My LLMD was going to put me on nothing else but I panicked. I know that most of us take 2 antibiotics at the same time.
I mentioned that I had both flagyl and tini left over from a previous regime and he said just to take the tini. He did not tell me how much, or if this is the right thing.
Please, I do need a response. I can remember nothing unless it is in writing. My symptoms are all cognitive and neurological.
Thanks
Posts: 190 | From BC Canada | Registered: Jul 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Chris,
I can tell you that you cannot get Bicillin the UK as it is banned.
Therefore, you would have to buy it (privately) from out of the country. You can get it from parts of Europe, however it is not the long-acting version and you have to mix it yourself, and it is quite bulky - twice the bulk of the premixied Bicillin LA syringes.
The problem you then have if you want Bicillin LA is that it needs 24/7 refrigeration. The only people who've been on it in the UK that I know (myself included) bought it in the US and physically brought it over to the UK themselves.
Sorry about the bad news on that front.
I did Bicillin LA for about 4 months over a year ago. I did not really notice any positive change, and I also possibly coincidentally developed very bad sciatica, which my LLMD was not happy about, coupled with several weeks of feeling so awful he thought I may have serum sickness. I did not hae serum sickness, and after stopping the Bicillin my sciatica also went eventually, which it probably would have got better if I carried on anyway, I just don't know. So, for me it was not big success.
On the other hand, one of my UK friends has been on Bicillin (quit now) for several years and she is now 100% well thanks to it.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Islandgirl,
I disagree with dll about the penicillin that is sold in many European countries and around the world.
If the chemical name is Benzathine Penicillin G then it is long-acting. It's used practically everywhere for rheumatic fever prophylaxis and to treat syphillis. Aventis' version, made in France, is called Extencilline 2.4 IU. It's just across the Channel and ought to cost about about 3.00 Euro per 2.4 IU dose. You can use half and refrigerate the rest for another day. It must be shaken again because it does not mix to the point of becoming solution in which the solids have been dissolved, instead it's a suspension. Thus when allowed to sit, the solids precipitate down. The water will have become practically clear, with the penicillin settled at the bottom. This resitance to dissolving is what makes it long-acting.
Sometimes Benzathine Penicillin G is mixed with Procaine Penicillin. this combination IS short-acting and is to be avoided.
While it does have to be mixed and the resulting liquid volume is about double that of Bicillin LA, it's probably the same amount of solids. Bicillin is thick, about the consistency of white glue. Extencilline is about the consitency of milk. Further, since you have to mix it, one has the option of substituting 1% Lidocaine for the water, as with Rocephin. Presto, far less sting.
If you and your doctor decide to go this route, you should be able to get it without undue difficulty. It's good stuff.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
David,
This is the information I was given by the Swiss pharmacy recommended to me while I was investigating buying my Bicillin in Europe. The pharmacist told me that Extencillin is not long-acting, which is why I did not buy it there in the end as my LLMD said I had to have long-acting.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
dll,
Then the pharmacist was mistaken. They sometimes are. People here have been given Bicillin CR by pharmastists when they needed Bicillin LA. When challenges on it, some claimed they were the same thing. When you asked about it, did you use the numeric designation, that is, Extencilline 1.2 MU or 2.4 MU? In some case the shorter acting version has the same name but with different numerical designations.
Benzathine Penicillin G is long-acting leaving traces in the blood stream for up to a month. That is why it is prescribed every three weeks to people, usually children, who have had rheumatic fever, which is basically strep throat spread to the heart. Interestingly, the medical profession does not have a problem with people using it for this purpose for life. Recently there has been some research suggesting that some rheumatic fever patients can be withdrawn after ten to fifteen years.
It used to be standard treatment for strep throat but in recent years Azithromycin oral has been used for that quite a bit. It is the standard of care for syphillis. Ask your doctor what is used in England for Rheumatic Fever prophylaxis and the treatment of syphillis.
Extencilline is available with the same numerical designations as Bicillin LA (600,000 U, 1,200,000 U and 2,400,000 U. In Spanish speaking countries it is called Benzetacil and in India it is called Penidure. Again, the same numerical designations are used.
I really don't have a need to be "right" about this but have researched this extensively and am certain. People need accurate information.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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