Topic: bicillin quest., only because search engine down
liz28
Unregistered
posted
Hi, everyone. I'm only asking this because the search engine is down, and I'm desperately seeking every possible Lyme treatment before graduating in six weeks.
Bicillin seems to be the next treatment to try. I'm sure my doctor would authorize it, and Lymenet people say they've had good results. However, I can't find out how long and how often you are supposed to take it, whether it creates a big herx, whether you can get it in your arm, and whether it interacts negatively with other abx.
Right now, I'm on flagyl, omnicef, ketek, and mepron, and maybe rifampin in the near future.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi again Liz,
I started Bicillin LA at the end of December and the reason I am probably having this huge herx might be from that (I hope). My good days are better than they used to be, but I still have a lot of mediocre and bad days, so it's too early to tell for me I think and whether it's the Bicillin which has improved my good days, or the Biaxin/Mepron which I've been on for months.
I'm sure the other Bicillin users will come by and post their experiences, which seem largely very positive.
I do have one friend who's been on them about 2 years now and is doing great, but her CD57 is still low so she is a bit scared of stopping the shots.
My LLMD told me 6-12 months, but I tend to think it's going to be longer if I see improvement in the first 6 months.
DLL
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Sorry, don't mean to totally divert, but Cave how long do they treat Syphilis for. I am sure I read somewhere that it was just THREE Bicillin injections(???)
DLL
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
OOps that appeared twice
[This message has been edited by dontlikeliver (edited 29 March 2005).]
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
My husband was on Bicillin 2 to 3 times a week for months. Finally, I could find no place to inject him so we stopped and went back on IV antibiotics. He started out on 2.5 mil units weekly, which produced no improvement. I tried 4.5 and he herxed. His LLMD at the time was not comfortable with giving him that dosage so she ordered the 2.5 at increased frequency. I think he could have stayed on it longer if she would have given it to him once a week at the increased dosage. Ann
Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
We've been doing it for almost a year; my understanding is that our LLMD uses bicillin for a 14 month minimum. I can't cite you any research on this for syphilis or Bb....
Started off at 1.2 IU every 3 days. My husband was so miserable with the continuous herx that the LLMD switched us to 2 shots together, every 5 days (the bicillin LA stays in the system over the 5 day period, or so I've read).
This worked excellently well. Herx for the first couple of days, pretty OK for the next 3 days. The herx wasn't that bad as soon as it wasn't continous, if you know what I mean. And around the 5th month the bicillin herx got down to just a day (we were doing babs tx concurrently, so it's hard to sort out). After the 8th month, there wasn't much of a herx at all, although we were definitely more tired for about 24 hours after the shot.
It was a big plus to get the shots over with all at once, rather than torturing ourselves every few days. AND, from what I've read, the BBB penetration is effective only at high dosage for penicillin.
We've taken a couple of bicillin vacations because we either ran out of bicillin or ran out of places to shoot ourselves in the butt, but in general we've been faithful to the schedule and I've been so impressed with the result that I decided to go the veterinary bicillin route if insurance cut us off. So far so good.
I'm currently on bicillin, tinidamax (much much easier for me to handle than flagyl), ketek. Plus supplements, of course. Be careful about adding in the Rifampin, OK? I know you're desperate to treat the bart, but we didn't add bart tx until near the end of the mepron/zith--bart tx was not the easiest thing to get through, and both flagyl and mepron are pretty hard on the gut and the liver.
Cave, read your other thread on syphilis. You are a treasure. I shall have to start referring to you as "the other Isak Dinesen"... Let us know if you experience the same turn around at the 8th month with bicillin, would you?
I used it for several months and found it very good at relieving muscle and joint pain, once the initial herx settled down.
It doesn't give rapid results though. I think 3 or 4 months before starting to feel noticably better is common.
It is a very slow release form of penicillin G... resulting in low serum levels that are detectable for up to 30 days. The low serum levels plus the fact that the natural penicillins are not metabolized by the liver means it is very gentle on the body... With the exception of one's gluteal muscles which must hold a bunch of it while it slowly absorbs.
No way would you want this in your arm... it is too much material for those small muscles, and they are also more sensitive to pain. It has to be a buttock (dorsogluteal) or hip (ventrogluteal) injection. Some have taken them in the thigh, but I would not recommend that site... I had one there once and it was very painful. There is very little pain if properly given in a gluteal site, but it can be a problem finding a spot to put the next shot after awhile.
I don't know if you been on this already, but our LLMD has us on 200mg of Minocycline right now, and it has done wonders clearing up the brain fog. The herxes as you ramp up to the dose can be brutal though, but the mental clarity was worth that discomfort.
It is something that gave us quick results... drastically improved concentration and cognitive function in 3 or 4 weeks.
The bicillin IMO is worth trying for awhile to see how you like it if you get the chance.
I wouldn't take it with too much other stuff at the same time though. Just a Macrolide such as Biaxin or Zith and maybe pulsing some Flagyl interittently to break up cysts has given good results from the experiences of others I have read here.
No need to overload yourself as that can do more harm than good.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
The rest have said it all. My experience has been very positive. As James suggested, I take Bicillin with Biaxin. I stay a little bit sore but I'm so greatly improved that I deal with that without hesitation. It's good stuff, especially for chronics. David
Posts: 2034 | From CA | Registered: Jan 2003
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I just wanted to share my experience with bicillin.
My husband injects me in the buttocks twice a week. My brain seems clearer but the pain I have in my legs and feet are still pretty difficult to deal with. I don't know if I am herxing or what. I am trying so hard to hang tight but it is kinda tough. I am hoping that I will get some better relief soon. I will see my LLMD on the 2nd of April. Maybe he has some answers.
I am not sure for sure how long I have been on it but I guess for at least 3 to 4 months now.
I haven't been online for some time now because of my pain.
I hope things work out with you as I do for all of us with this nightmare.
Take care.
Maria
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Liz:
I have been on IM BIcillin at 2.4 units once a week for 9 months. I have seen good improvement with this. I am also on Mepron, Zithromax and Artimisinin at the same time.
The Zithromax is destroying my intestines, so I may stop that soon. I have had to stop orals for this reason many times. So, the Bicillin is preferable for me, even though it doesn't target the Babs.
The only downside is that I have developed some pretty hefty scar tissue in my left buttocks that makes the injections painful there now. My nurse rotates the site between cheeks and hips. I don't know how much longer my muscles will be able to absorb this med.
You CANNOT take Bicillin in the arm. I usually clarify in my posts that "this is just my opinion" but, in this case, I can safely tell you that it is never given in the arm, not even to babies. The thigh is used in infants and SOME adults. You need a good muscle that is not full of blood vessels and nerves. Your options are your upper buttocks and your hips. I had one injection in my upper thigh and I bled like I had been slashed and it hurt a lot.
Otherwise, Bicillin is convenient and seems to work for many people.
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