David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
As some of you know, I've been around a long time and on Bicillin LA and Biaxin. This last spring I had to cut back on Bicillin due to financial/supply reasons but have now solved that. When I reduced my Bicillin from 1.2 MU three times a week to once a week, I became more symptomatic. Since increasing it again, things have normalized.
Meanwhile, I've started having more GI problems in the last year. Part of it is surely that I have had three abdominal surgeries but I wonder if the Biaxin is also implicated.
So, does anyone know of anyone who has had stable remission on Bicillin alone? I see my doctor on the 4th but am pretty sure he will not have an opinion on this as he is Lyme friendly and not an LLMD.
Thanks.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Hey Dave. I've seen a couple of docs who thought very highly of Bicillin.
Have you considered/or tried running an oral long-term?
Like many abx, Bicillin doesn't hit the cyst form, but I'm sure it would work fine as suppressive therapy over the haul.
If I can ever get close to "normal again," I'll probably run some kind of mono abx therapy as well at manageable doses...
posted
Hi David, Just passing through and saw your post--an old-timer among all the newbies. Glad to hear that the bicillin is working well for you again.
My son, was unable to handle Zithro or Biaxin b/c of intestinal issues. Don't know if that's what is happening with you.
He didn't respond very well to the second round of bicillin that we did last year, but is now taking Factive, a floroquinolone and is having very good results. The doc is pulsing it 5 days on every two weeks (5 on/9 off, more or less). It hits Lyme and Bart, both of which we know he has. You could ask your doc about that--it's an intracellular like Zithro and Biaxin, where as the bicillin is hits the cell-wall. Our doc likes to cover both.
Just to update, my husband was bitten last summer, didn't get tx right away and ended up with major arthritic sx. Saw a rheumatologist, then went to the LLMD and got improvement with antibiotics. First round helped alot, then he hit a plateau and now is taking Zithro, Plaq and bicillin. It's so much easier for me to give him the shots than my son! They were always very painful for M. but my husband has a much more substantial 'target' and they rarely hurt much at all.
I hope you continue to improve and that you are recovering from the surgeries.
Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Thanks folks. Here's an update. I saw my doctor and right off the bat he agreed that it was highly likely that the Biaxin could be a major culprit in intestinal issues. We came up with a plan to cut back, or stop at least temporarily, my call.
So I started taking it nightly with Bentyl (he approved of this plan), as Bentyl tends to slow things down and relax smooth muscle. It seemed to help some so I decided to go off Biaxin for a week. It's been about four days and it seems to have really helped. Of course, I'm still taking Asacol whose main indication is ulcertive colitis. And I'm still taking Bentyl at bedtime. After a week I may try going back on Biaxin to see what happens. However, it seems likely to me that Biaxin doesn't fit well into my future.
What all this does seem to rule out is my problem being due to bacterial overgrowth. So at least there's that. I haven't had a callback about my labs so presumably I am not anemic and that, if true, would tend to speak against me actually having ulcerative colitis. I have to call and see if they will tell me. More likely I just need to see him again to go over everything and come up with the next plan.
Nancy, thanks for the ideas. Sorry about your husband getting bitten. I swear it's EVERYWHERE! I live in a small city and know seven people in my profession who have chronic Lyme. No, we are not forest rangers. We are social workers.
If anyone has ideas about an appropriate oral antibiotic that is easier on the gut, please let me know and I will add it to the differential possibilities.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Hi Dave. Biaxin has the same effect on me. I have been on zith before and it did seem a little easier on the gastrointestinal side.
However, my LLMD feels that biaxin does more re: lyme, so I went back to it. Sometimes I have to pulse it- like 4 days on , 3 days off, etc. I also take loads and loads of a great probiotic. Seems to help IMO.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Alright!!! Here's an update. I stopped all oral antibiotics during the summer and my Lyme symptoms remain minimal. Very doable. I've since had a colonoscopy and inflamation was found. I went off Asacol for a few weeks prior. The GI doc sort of blew off the significance of the information by my Lyme-friendly PCP says I have some sort of IBD. Summary: My GI issues are manageable with Asacol 800 mg. t.i.d. and careful eating. I expect this will become more of an issue again, eventually. Bicillin seems to be effective as a suppressive monotherapy, at least in my case. Nancy, how is your family doing?
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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How are your muscles holding up to the long term Bicillin injections? Have you had any problems with scar tissue or loss of muscle mass?
Hey... If you are having intestinal inflammation, you might want to have look for a Strongyloides infection. They are extremely common and rarely considered. When I found them in my sinus and various other places they supposedly don't even go I educated myself and got after them with some Ivermectin... and all sorts of annoying problems went away.
Humaworm and other stuff that people take for intestinal parasites do not touch these because they breed inside the tissues of the intestinal walls and enter the bloodstream. You would not believe how common they are when you start looking for them.
I am glad to hear you are doing more or less OK. You are definitely a survivor!
Regards, James
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
My son does. He did monotherapy for 2 years. He did Doxy for a few months, Mino a month, Biaxin only a few weeks and then Doxy again, followed by Bicillin alone for 9 months and he got well.
About your stomach issues. I just posted that I was having stomach issues too. I have been on Biaxin too and started cutting down, thinking that was the culprit. My LLMd tested me for H.pylori - that was the culprit and now it is being treated and I can't tell you how much better my stomach/intestines feel. You might want to ask for H.pylori blood testing.
Ironically treating H.pylori includes amoxi/biaxin and a ppi, such as nexium or prevacid,etc.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I have heard of stable remissions just on amoxicillin, so it seems that bicillin could work too. Personally, I would combine it with some of the herbs suggested by Buhner, like resveratrol and androgrpahis.
Best wishes and hope your GI issues resolve.
Posts: 2557 | From home | Registered: Aug 2006
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