HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi everyone,
I'm looking for opions and experiences.
Everyone thinks I.V. is the best treatment. But the more I read about it on postings the more I don't like it.
High relapse......
Insurance hassle...........
Cost.
I'm leaning towards Biccillin I.M. It's cost effective. Don't hear about insurance hassles. Only read about herxing on it.
Is there something I'm missing?
I do know 2 families who got better on I.V.s in the 1980s. they then switched to orals and all became healthy.
I don't know anyone personally who is or did I.M. Just here on the board.
All opions welcome. Thanks.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on IV for 6 1/2 months and it recently got pulled due to a fungal infection of unknown identity.
I got much better. However, due to GI upset (maybe from the anti-fungal drug) I'm off all medications, except probiotics.
My PCP has told my LLMD that she thinks IM would not be a good choice for me, since I'm thin, have little fat on me, and it would tear up my muscle.
I hadn't thought about that, but if that is true, I wouldn't want it. As soon as my GI clears up, I'll be speaking to him for his opinion. My guess is that he will try orals.
Nice to hear of some families that you know of that got better with IVs and then orals. I hope to too!
I liked my IV. And I think it helped me a great deal. If you're thin, IM might not be the best choice...
Good luck.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
You know, Bicillin IM is kind of a puzzle as far as treatment of Lyme goes. It is completely backwards of everything we think we know about Lyme Disease treatment.
Lyme is a very difficult infection to kill, so the conventional wisdom has been to throw high doses of the strongest (and often most expensice) medications we have available. Even then, it seems to just laugh at our eforts many times.
Bicillin LA on the other hand is just a modest size dose of plain old Penicillin G, the kind that has been in use since the 1950's, but in a very slow release base that releases tiny amounts of Penicillin G over 2 or 3 weeks.
In the earlier days very high doses of Penicillin G given IV were tried, but with disappointing results.
Logically the very low Penicillin levels Bicillin achieves should do nothing at all! Perhaps a little placebo effect... "My backside hurts a bit from the shot, so it must therefore be really strong medicine."
Illogically though... it DOES seem work. Some have had really good results, especially when combined with an oral like Biaxin.
I think whoever figures out TRULY why this is so will have some major pieces of the whole treatment problem solved.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Hi, Heather
Only on Bicillin IM now, if you don't count herbs / vitamins. Orals were hard on my stomach, and the macrolides messed with my heart. I herx on Bicillin. Sometimes I feel like I am coming down with "something" a day or two after the shot. Scratchy throat.... foggy head....
I am skinny, too, but LLMD never mentioned anything about Bicillin being contraindicated. Still, I do feel the lump in my butt all week after the shot.
Overall, I think it might be helping, but since I still have these heart scares regularly, it's hard to appreciate the positive effects.
Curious if it's a good idea to use Bicillin along with pulsed cyst-busting ABX, but I'd have to run this by my LLMD.
Any other questions, just ask...
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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posted
Heather- I've been on Bicillin IM for three months now, after hitting a plateau with orals. I am still on zith, to go with Mepron, but that might be over soon as its been 8mos. of Mepron for me.
I am pleased with the results. Major herxes that I feel have demonstrated that it is getting to the nervous system, the source of most of my symptoms.
Insurance...I am currently battling them to get it covered. Long story, but their stance is that bicillin is a 'health service', not a self-administered injectible. My LLMD is a non-participating provider and does not administer the shots so it is very complicated. I don't have confidence in a positive outcome. But maybe your insurance is better.
LC
Posts: 116 | From Pennsylvania | Registered: Mar 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I've done both, but only about 5 weeks of IM and a total of well over a year of IV (split up over 3 times since 2002, on the third time now). For me, the Bicillin didn't help but I didn't give it that long because for me getting the shots was just too much.
I think that aspect of it is very individual - some people can't handle having an IV line all the time and the hassles that come with that and having to spend time tethered to a pole while others can't handle getting a shot in the butt once (or twice or three times) a week. My preference is definitely IVs, but that's just me and there are others who much prefer the convenience of the shots.
As far as effectiveness of IVs, I've had ups and downs with them. In 2002 I was on IV Rocephin for 4 months followed by 2 months of IV Zithromax and had a lot of improvement. I did well for about 5 months after stopping but a) wasn't on a cyst buster with the Rocephin, b) wasn't on good enough orals with the IVs, and c) wasn't on good enough orals after stopping the IVs so I started relapsing and since then it has mostly been downhill.
I was on Rocephin for another 3 1/2 months in 2004 with no improvement (I had complications and I suspect antibiotic resistance). Now I'm on IV Primaxin and I'm slowly improving on it.
I've jumped around doctors and I feel comfortable with my current doctor in his knowledge of my treatment protocol and I'm also on Tinidazole with the Primaxin so I think things are going well for me because of all that.
Sorry for being so long-winded but I hope it helps! In the end, it's up to you and your doctor (but ultimately you) to decide what is best for you and your case.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Thanks everyone!
Timaca, I'm fat!
James H, Very interesting. Makes sence.
Johnny b, How long have you been on biccillian so far?
Annie, Thank you. I hope you get that right combo and heal this time.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
About 2.5 months, but I can't handle high doses. We tried 3 1.2MU shots a week, but I "overloaded" and had to bring the dose back down.
Though it's debatable if bicillin actually crosses the BBB, I can report that since being on Bicillin, the numbness / tingling in my extremities has pretty much gone away.
Check with your LLMD, but I'd say if your insurance covers the shots, it's worth a try.
AWFUL nightmares, though....
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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posted
Hello, I was on orals for a year and made decent progess. I have been on IM Bicillin for three months and have made great progress. I currently do Bicillin every three days, oral Zithromax twice a day, and I'm pulsing cyst busting Tindamax. My husband gives me the shot so I do not have to pay get it done.
I am a skinny person, and overall have tolerated the shots well although I do have a few new lumps in my glutes. I make sure to put ice on the injection site right after I get the shot to cut down on soarness. It is also important to rotate sides and injection spots to allow areas to heal. I would recommend trying Bicillin to see how you tolerate it. It's worth a shot!
Take care, Ms. Myo
-------------------- Posts: 122 | From Texas | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Thanks Myo and Johnny!
Myo I L O V E your dog heads!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Heather!
The very first people I knew about with Lyme -- both from NJ and both late-stage -- were treated with IV abx for about 16 months.
They paid for this out of pocket, they said.
They're both better now...not 100% but about 90%.
I'm on orals and have seen some progress in 7 months but seem to have hit a plateau just in the last month. Now, I've got some new symptoms emerging and don't know if this is good news or bad news
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
ill never do IM Bicillin again. Then again, I have a slight allergy to penicillin. When I was one it (I am sure EVERYONE here remembers how I felt over Thanksgiving???), I felt like I was going to die. A really bad herx? Maybe. An allergic reaction? Maybe even though I was desensitized to it.
Everyone is different. We are pushing for IV meds now so we'll just see what happens!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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David95928
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Member # 3521
posted
The combination of Bicillin and Biaxin have been very beneficial to me.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
up
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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