Hello to all. I'm new here, but not new to Lyme. I've had Lyme and Babesiosis for seven years. After many misdiagnoses, treatment protocols, successes, failures and remissions, I've recently started twice-weekly deep-muscle (hips) penicillin injections. I would like to hear from others who are using this treatment. I am concerned with the long-term effect on muscle and joint health. I am a yoga teacher and a runner/hiker and am currently disabled much of the time due to arthritis and now muscular stiffness in the hips.
I will value any replies. Thank you Yanette
Posted by RuthH (Member # 7430) on :
quote:Originally posted by Yanette: I am concerned with the long-term effect on muscle and joint health.
Hi Yanette, I've never gone through injections, so I can't offer any info on that. However; for long term effects your best bet would be to contact the manufacturer of the drug. Find out the company name & look it up online to see what info they give there. Then contact the company CEO & ask what info they have collected on long term use of the drug. They have to have trial studies to have been allowed to sell it on the market, so in their research, they should have something they can tell you.
I've done this with a couple of companies & have been treated very respectfully by the CEO's who were more than happy to answer any questions. It's worth a try!!
Ruth H in WV
Posted by janet thomas (Member # 7122) on :
I have been using IM Bicillin L-A for 9 weeks , along with ketek and antifungals and supplements. I've had no problems with the injection site. There are others here who have used it much longer. Before use I was tested for pencillin allergy.
The package insert -re: long term use- I believe it mentions 2 injections at a time for 3 weeks to treat late stage syphillus.
For me Bicillin may be the abx with which I am finally showing some improvement.
I've also started twice weekly IV glutathione which really helps me to feel better.
Posted by minoucat (Member # 5175) on :
Hi Yanette. You're using Bicillin LA, yes? Good question!
I've been using Bicillin 2.4 IU every 5 days for over a year. It's been a wonderfully effective tx for me, and has not caused any problems with my muscles or joints, and my arthritis is almost completely gone. I just started yoga again. As far as I know, no one else has reported any long term problems from bicillin (other than issues with either allergy or serum sickness, which are a totally different problem).
There is a good post from a long-term bicillin user named David95928 , and you can find others using the search (under the "Post Reply" button.
I still had to address coinfections (babesia and bartonella) separately -- bicillin is not effective against them.
Welcome aboard -- Here's a link to the infinitely helpful Welcome Links Posted by Christine202 (Member # 6158) on :
I have been on IM Bicillan for 5 years or so now....
I love it and have had no problems with injection sites as far as muscle problems etc...
Its a Godsend to me... I have tried to go off but I do much better with it.
Good Luck.
Posted by Yanette (Member # 7872) on :
Wow!
What a quick and helpful response from you all. Thank you so very much. Yes,I went over to look at the other posting/chain on Bicillin use - thank you. I am using L-A. I started with C-R but didn't tolerate the Benzathine well. I'm beginning to tolerate the injections better now after my seventh (still early days). The soreness is lessening, and the next-day crash is less pronounced. I keep my fingers crossed that this will work for me as well as it has done for so many of you. I didn't mind IV Rocephin, but it left me pretty weakened and dehydrated, so that's not an option in the near future. I went for a 1 1/2 mile walk along the cliffs yesterday morning. Haven't done that for so long: must be a sign that something's working! Thanks again. Yanette
Posted by DolphinLady (Member # 6275) on :
I've been on bicillin la for 4 months now, 1.2 IU weekly injections. Its helping a lot. I feel better than I have in years - when I'm not herxing from it.
The herxes have been hard but worth it.
Everyone I know on it is improving. In fact it has a better track record than other lyme remedies in my opinion.
I haven't heard of anyone having muscle or joint problems from long term use. In fact, its been quite the opposite. However, the herxes may cause flare ups in these areas.
I always feel worse the day after injecting. I feel sore, stiff, tired and depressed for the day.
Posted by Yanette (Member # 7872) on :
Thanks. Yes, the first herxes are rough, as always. Today's herx, after my first double injection, was horrible, but has suddenly lifted. I just mentioned this in reply to another Bicillin question on today's board. I'm relieved to hear that the day-after herx is normal, thank you. Yanette
Posted by David95928 (Member # 3521) on :
My doctor has had me on Bicillin plus Biaxin for about two and a half years. Great combination. David
Posted by WildCondor (Member # 434) on :
You should be fine. Are you talking about damage from the actual shots, or from the effect of the antibiotic, or both? I did all my own Bicillin LA shots for over a year and then again for many months and never had a problem with muscles or joints, just herxing...lots of it, but only improvement, no damage.