Hi. I need to come to a decision about whether or not to add Bicillin IM to my treatment which over the last 12 weeks has been biaxin, with a later addition of omnicef.
It is not covered in my insurance coverage and so I want to be sure it is necessary and effective.
I have had chronic neuro lyme for at the least 15 years and at the most 30 which would coincide with my first remembrance of a tick bite before I turned 10.
I would like to only be on antibiotics for 6 months especially, as I understand it, there have been no studies to show that it is more effective than placebo in chronic neuro lyme (Columbia website). Not saying I know or understand if this is indeed true. Also saying I know the antibiotics have made a helpful difference in my life over the last several months. While it may not be realistic to go off at 6 months, it is still what I am hoping for.
I guess my main question is...in order for Bicillin to be effective....is there a general rule for the DURATION of that type of addition to the treatment plan??? I would need to weigh the cost to benefit ratio based maybe on some experience others share about use of the Bicillin, which I understand is predicted to cause a major herx.
Any and all advice or thought is appreciated!
Posted by lymie tony z (Member # 5130) on :
I have had some of my best results from IM bycillin...however I have had iv ceftriaxone and other orals previously.
I also don't think I was on IM long enough but it does get to be a litteral pain in the butt.
Lately there has been material brought up here that recommends IM bicillin with Diflucan... You may want to search for that...
Unfortunately no one knows for sure if six months is long enough...I hope in your case it is but don't get your hopes up too high...would'nt want you to be too dissapointed...
Take what you can get....good luck......zman
Posted by painted turtle (Member # 7801) on :
Thanks zman...yes you have some good words of wisdom, I won't get the hopes up too high but it doesn't hurt to have that kind of goal, does it?!!
May I ask...how long you were on the IM Bicillin that you don't believe was long enough, and why you went off them and why it wasn't long enough? I mean, did you progress and then regress???
Recently I had a neuropsych assessment and will be getting results of exactly what parts of my brain are not working. Basically sometimes it feels as if my breathing mechanism forgets to breath. I feel quite strongly that any cognitive therapy will be as powerful as the antibiotics in healing so I can deal with the effects of what this dis ease has done to me in every way.
Thanks for any more conribution to this topic.
Posted by groovy2 (Member # 6304) on :
Hi turtle
I think bicillin - biaxin is a good move--seams to work on cronic lyme--
If you have had lyme a long time its going to take a long time to get over it--Jay--
Posted by WildCondor (Member # 434) on :
It seems like you have already made up your mind not to treat your Lyme longer than 6 months. If you have been infected for that many years, and your attitude is that 6 months should cure you or else it doesnt work does not sound like a smart idea. I wonder what your LLMD thinks of this idea. It may take you many years of treatment and different antibiotic combinations to get better. There is no by the book, everybody is the same, standard of care. Everybody is different. I took Bicillin for about 2 years. It requires patience and determination! I wish you luck, but you might want to seriously consider opening up your mind, learning more about the complexities of this disease, and learning about your treatment options. Posted by painted turtle (Member # 7801) on :
Thank you Jay and WildCondor. I just wanted to get an idea of others experience with IM Bicillin b efore I choose to make the investment in starting the stuff and wanted to have an idea of duration so I could project financially, plus I wanted to get an idea about efficacy, true efficacy, to get an idea about the value of the investment.
I have a pretty open mind but maybe I, just like any of us, really don't want this disease. I don't think it is denial on my part, really - but, maybe a bit. I think I am being optimistic if anything. I first tried for 3 months and while I passed that marker unsuccessfully, I continued with antibiotic treatment.
I have a long term personal experience with the complexities of this dis ease and could probably educate many doctors out there about the experince but not necessarily about the objective causal factors, but I think there are many of us with chronic lyme who could do the same. Even then, each story would be different but surely there would be a lot of commonality. I have researched it and the truth of the matter, in my opinion, is that no one really knows enough about it at this time especially in an objective clinical scientific way (with regard to chronic neuro cases).
I think I am trying to be realistic about what damage is already done and what is caused by an active infection. My lyme person says 6 months is minimum and she is willing to work with my goals but will check CD57 before any decisions are made.
....Now if I could just fix this broken hypothalamus....
I will probably do the Bicillin IM.
Posted by Ewok (Member # 8319) on :
Be careful with Bicillin IM--you want to make sure not to hit a vein--could be fatal. Always draw syringe back a little to make sure there's no blood there. I'm not a doc but a LLMD told me that.
Posted by Nal (Member # 6801) on :
I am on IM Bicillin right now as well. It hurts going in but definately check to make sure you don't hit a vein or anything when you do it. Have a trained nurse or dr show you how to administer it.
Nancy
Posted by painted turtle (Member # 7801) on :
Thanks I haven't gone ahead to buy it yet, trying to determine if I want to wait til January when holidays are over since it is predicted to cause prolonged herx. Who the heck wants to be herxing during the holidays?? I don't know which choice would be the wiser to do it now or to wait. But i'll figure it out.
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