The doctor is talking about taking my son off of orals and trying bicillian shots. Anyone do this? What should we expect from the shots. He has reached a stand still with treatment, not any better in a while and depressed because of it. We have been on many orals which have been hard on him.
Thanks everyone for your input, sometimes I wonder what I would of done without finding your help! You all mean a lot to me and have helped so much!
Amy Posted by TNhayley (Member # 8249) on :
Don't have an answer, but hoping someone will respond ... up
Posted by Jill E. (Member # 9121) on :
Hi,
Have you tried doing a search for Bicillin topics? We've discussed Bicillin many times - everything from how hard it is to obtain due to a current manufacturing shortage, to how to minimize the discomfort, to whether insurance will pay, etc.
I know that several people have posted that Bicillin has helped them enormously - some have said it's been the most helpful of all the medications.
I've been on Bicillin for several months and find it just keeps me at a plateau, but I've got coinfections to deal with that are probably interfering. My LLMD and I decided to let me try it rather than go to IV after all these many months on orals.
I will say that the discomfort is almost non-existent once you get the hang of it. Will a nurse be injecting or are you planning to learn to do it?
I have a nurse inject me. She does a great job.
In general, I think the posts have been very positive about how well Bicillin works for most.
Take care, Jill
Posted by Lymetoo (Member # 743) on :
It beats IV if you can tolerate the shots. I hear bicillin works very well.
Posted by concerned mother (Member # 8128) on :
Thanks everyone, I will look up old posts. I hope this helps my son, I hope to find a nurse to help us with this.
Amy
Posted by LC (Member # 7070) on :
Hi Amy- My mother did my shots for me. She was trained by the dr. and once she got over having to stick her daughter, it was fine.
I liked the independence of doing it this way.
Mine hurt a little in the beginning. But then it seems the body gets used to it, and pain was minimal.
I had hit a plateau with orals and switched to bicillin. It helped me a lot too. But I also took minocycline at the same time as the shots. Good combo for me.
LC
Posted by KatieBugsMom (Member # 3184) on :
Hi, Amy -
My daughter opted for Bicillan shots before trying IV therapy when orals had done all they could (I passed LD to her during pregnancy - went 14 yrs w/o treatment). She's quite a trooper, and altho shot is painful while administering, she tolerated them extremely well. And, they have REALLY helped her immensely! We had a nurse administer shots, since this is an intramuscular shot and extremely important that it doesn't get into veins instead. Also, altho I would have done it - I was relieved that darlin' daughter would not consider ME giving her the shots. whew! However, I understand a lot of people do this themselves.
Posted by KatieBugsMom (Member # 3184) on :
Oh - I should also mention that she has not had to go on to IV treatment - she is presently enjoying symptom-free days! Posted by bettex99 (Member # 8109) on :
Bicillin can work great, it did and is for me. I have been on them for about 18 months now, just had my shot about 30 min ago. I can be very highly functional on bicillin. I can walk 50 minutes or ride my bike for 40 to 50 min. Helped my brain fog and fatigue.
At this time I have plateued on bicillin and am now addressing co infections, but am staying on the bicillin.
That being said, at first one can get pretty sore when starting the shots but this goes away as the body adjusts. Depending on how lymey I am at the time of the shot, I can get warm and flushed about 20 min. after the injection, I figure its the benzathine. When I first started the shots when I was really sick I would get some weird sensations that could be a little scary but they were not allergic reactions, just my body being ****ed off. They would resolve in about an hour.
One can herx hard on bicillin. I did for several weeks, but it was worth every bit of it. There were times I would herx hard within an hour of the shot, depends on the germ load I think , I had a very high germ load when I started this therapy. Ease into it with maybe one shot a week for two weeks then go to the two shots a week.
Also you have to be on a strict yeast diet, at least I had to. Over time I could cheat a bit but I am now back on a very strict yeast diet.
Its a worthwhile therapy, if you have questions feel free to PM me. I am a veteran user. Good luck!
Posted by Squeegee (Member # 7219) on :
I have been on Bicillin for several months now and like the freedom from having to do the antibiotic/probiotic dance every day.
In addition to taking the tubex out of the fridge a little ahead of time and injecting VERY slowly, it also helps to ice the injection site for several minutes beforehand. Walking around quite a while afterward helps to avoid having a big lump.
It does get easier to tolerate over time.
Hopefully it will help your son progress in his treatment. Good luck to you both.
Betty B
Posted by Jill E. (Member # 9121) on :
Hi again,
If you look for my post from April 2006 titled Minimizing Bicillin Discomfort, you will see my and several other posters chiming in with ideas on how to reduce the discomfort.
Everyone finds the combo that works best for them, but the fear was far worse than the reality. I've been getting Bicillin injections for so many months, and there is so little discomfort now that I have my routine, that I don't think twice about it.
One of the main things is to inject slowly. Bicillin is a very thick, glue-like substance. It needs to be injected slowly in order to allow the muscle enough time to absorb it. Injecting slowly helps reduce pain, lumps and bumps.
I haven't had any of the lumps that some people get from Bicillin or Rocephin injections. And the only time the pain was lasting was when a substitute nurse had to give me the injections, rather than my regular one, and she injected too quickly.
Take care, Jill
Posted by minimonkey (Member # 8693) on :
I , too, had really good success with bicillin LA -- I did the shots myself -- it isn't hard, you just need to be sure you aspirate to guarantee you haven't hit a blood vessel/vein.
Recently the pharmacy had been unable to get the 1.2 mu shots (which I had been doing 2x/week) so we switched to the 2.4 once a week -- those needles/shots are HUGE! The little ones never hurt me much if at all -- the big ones did.
I'm taking a break from the bicillin at the moment after developing a serum-sickness type reaction -- not sure if I will go back on them or not, but they did help me a great deal!
Posted by concerned mother (Member # 8128) on :
Thanks for all the great tips everyone! I will read up, we head to the doctor on October 2nd
Amy
Posted by JennyT (Member # 9894) on :
I would agree with the previous comments. Bicillin can be a painful shot, but can get better over time. The 2.4M shot is a large dose and given with a very large needle. Very uncomfortable.....I have had three of these, and not looking forward to the next. Not sure how old your son is, but I don't think a child could handle the 2.4M shot. Too big, and too painful for a someone with a small hip muscle.
Posted by Jill E. (Member # 9121) on :
Hi again,
Depending on the age of your son, the pediatric dose, I believe, is 600,000 million units, not the 1.2 million or 2.4 million that we adults use. So I would think the needle would be that much smaller.
But the Lyme doctor will have all the specifics and will obviously make the right dosage recommendation depending on age, size, etc.
Jill
Posted by lymeout (Member # 8045) on :
My daughter just started bicillin, starting at one half to two thirds of adult dose (she's 20), and she is herxing like crazy! I am really reluctant to increase the dose yet. Has anyone had experience with starting at smaller doses and successfully moving up?
I can't bring myself to give the injection. We asked our primary care to do it, even though they did not prescribe it; and they agreed.
Posted by TheCrimeOfLyme (Member # 4019) on :
Bicillin made me well. I had come a long way by the time I got on bicillin, but I was at a stand still myself going no where fast.
I'm currently off all abx, and symptom free except for yeast systems ( two or three).
Posted by David95928 (Member # 3521) on :
Great stuff, especially with Biaxin. As others mentioned, the shots make one sore at first and then the body seems to get used to it. It's an old, Korean War vintage, drug so its properties are well know. It's easy on the organs because it is excreted slowly.
How does your son feel about this?
[ 25. September 2006, 08:02 PM: Message edited by: David95928 ]
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whew! However, I understand a lot of people do this themselves.
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