Early Friday morning I will be traveling 5 hours to my ILADS doctor. I have been in treatment for almost 1.5 years. I'm able to work but wonder if it is time to make a move since my infection is 30 years old. I have bart and babs also.
My son did IV antibiotics and they changed his life.
Burroscano and others have said that old infections usually need IV's at some point. I feel like that is me so why wait. It has been discussed already with my doctor.
Should I try bacillin shots before moving to IV antibiotics in your experience?
Any idea how long IV would be with an infection so old? I am somehow very forutnate to not be terribly sick.
Posted by CherylSue (Member # 13077) on :
Hi Kari,
Yesterday, I watched Dr. Burrascano's DVD from his March 2011 presentation. He says he's had success with bacillin shots, and that may be easier for you than the IV.
Since you're not terribly sick, why not try the easiest route?
Also, when you see your doc, ask him about the test range for babesia. It's no longer under 10, but goes up to a range of 54 on the ECP. Our doc told me Babesia wasn't an issue at my 19.
How are you treating the Bart? Any success with that?
Best wishes on your visit. Let me know how it goes.
Hugs, CherylSue
Posted by ktkdommer (Member # 29020) on :
Anyone else? Advice?
Posted by Marcie (Member # 10070) on :
HI Kari- I have heard Bicillin shots can be just as effective as IV treatment. There are more side effects from IV's (line getting infected..etc). I have also read that it takes a few weeks to herx or feel improvement from the shots.
I am going back and forth on this subject too.
Let me know how your apt. goes.
Have you heard anything about the ecp test changed? It must a new test. Not sure if a lab can just change a test range after telling people they were positive.
Posted by Abxnomore (Member # 18936) on :
Bicillian shots can be very effective and they are usually used with orals and a cyst buster and malaria meds if you have babs.
No reason why you should not give them a try, per Dr. B's guidelines and see if they make a difference for you.
Posted by twicebitten (Member # 5412) on :
I have had lyme for probably 30 years too..and had IV for about 3 months (Rocephin)..it didn't help me, although it may have if I could have done it longer. The insurance wouldn't pay anymore.
I haven't tried the shots, but would like to. One of my docs wrote an RX for that probably around 6 or 7 years ago, but my insurance refused to pay for it too..she only wrote it for like a month or so. It was going to be $600, so I didn't try it.
I have been on orals only since and seen improvement after 3 years but now am not getting any better, in fact worse and am trying some things on my own.
I fear I may need IV again but have no idea how I will pay for it, and no doc in my state to prescribe it. My llmd doesn't do IV, or at least doesn't want to do it for me, not that it would matter he is 1,000 miles from me. Every time I take an order for a test like MRI, or CT scan they refuse to do it here and I have to get my pcp to rewrite it..
I'm at a loss as to what to do. I haven't worked since Nov. 2005 due to this stuff. I was working still when I had the Rocephin/Flagyl combo..but don't see how to get that going again. When they start mentioning wheel chairs you get a little desparate.
I have managed to avoid the chair, although I had a walker, scooter and leg braces at one point. I still have my braces but haven't used them in several years. I would like to improve more but not sure which direction to go at this point. I am self treating now with salt/C and mino.
Since you are still able to work I may go for the shots, then if that doesn't work go to IV..but discuss with your doc. He should be able to help you more than I. If your insurance will pay for IV, maybe just go for it??
Posted by sammy (Member # 13952) on :
My personal opinion, try the Bicillin LA shots first. They are supposed to be as effective as IV.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sammy: [QB] My personal opinion, try the Bicillin LA shots first. They are supposed to be as effective as IV.
- and you may be less likely to relapse. Rocephin relapses are very common, esp if cyst busters are not used.
Good luck with the Bicillin LA if you decide to do that!!
Posted by ktkdommer (Member # 29020) on :
Thanks everyone!! I think I know the route I want to take now. You guys have been so helpful! So good to hear about others where it worked.
I would still be taking orals and treating coinfections.
Posted by blinkie (Member # 14470) on :
If it was me...I would go to IV. I wish I had done so sooner. The shots can be painful and take longer from what I have seen on this board and from my husband's experience. I've been on IV and gotten better faster in a shorter time than the 3 years I did orals.