joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I just got my last bicillin shot after being on them for fourteen months and doing really well.
Did any of you relapse after stopping bicillin.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
I am also really interested in outcomes since I just started Bicillin (2.4 mil weekly).
So far I am hearing from patients who have been on it for years but are afraid to go off. Then again, most who do really well don't post here anymore. I have heard of many who just do bicillin and no other additional abx (like Flagyl, Biaxin) and never come back on this board.
Anyone?
Posts: 770 | From USA | Registered: Jul 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Yes. IF I eat right, get a good nights sleep, exercise, and don't overdo it.
I'm feeling better than I have in twenty-five years! Not perfect but I could happily live like this.
I'm just really scared to stop the bicillin. I don't want to lose any of the progress I've made.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
My personal theory (and many studies point the same) is that bicillin merely suppresses the bacteria -as beta lactam merely make borellia hide in l -forms and cysts . Not eliminate it . So naturally after you go off it it will re emerge.
I d think if you use other drugs along with bicillin (flagyl, some good intracell drugs) - did you do any of those?
But regardless that supression seem do people lots of good . I mean if you relapse you can go back on it .
p.s. Damn I can't imagine people staying on those shots for so long. Those things hurt and leave bumps and scar tissue really fast Posts: 856 | From MA | Registered: Jul 2009
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posted
I have searched under Bicillin many times and it appears there is no follow up here with Bicillin users. Most do not post here anymore, so know way of knowing. Not sure if that is good or bad. I would assume your LLMD might know what the recovery numbers are.
I would like to hear from others also. Would be great if this board had a poll for different protocols and their outcomes (i.e Bicillin, Rocephin, others).
Posts: 770 | From USA | Registered: Jul 2006
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posted
Bumping this up just in case there are other Bicillin patients out there.
Posts: 770 | From USA | Registered: Jul 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I did Bicillin LA injections twice weekly for about 6mo(in combination with other oral antibiotics). My doctor wanted me to try 3 injections weekly but I couldn't tolerate that many. My muscles hurt all the time so I had to stop.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Joalo.. Good question about the flagyl or cystbusters. Did you take them?
I understand your hesitance... but I don't think you'd lose "everything" by stopping to see where you are on this. You've probably beaten down the keets pretty good!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I did Bicillin injections once a week for about 8 months. For 2 months of that time I took Diflucan at the same time (kills Lyme, not just yeast.) I gradually improved on Bicillin and later in the course felt quite good on it, maybe 90-95%. (Though I felt rather lousy when on Diflucan.) Did I relapse - yes, quickly actually. I guess it just depends on where you are in your treatment though. I didn't think I was done with Lyme when I stopped Bicillin, I just got tired of the injections and the slow pace and moved on to other treatments.
FYI there is a talk by Dr. B on video, available on the LDA website videos page, and right at the end during Q&A he talks about relapse after bicillin. I think he said that knocking the Lyme back then causes other coinfections to rear up, particularly Bart.
Also perhaps of interest - my LLMD feels that Bicillin operates under the radar of the borrelia given that a very low abx level is maintained over time. So it very gradually kills them off because they don't realize its there and don't go into defensive mode. He started me on 10 days oral penicillin and then I got the first Bicillin shot timed with the end of that. And I only got 1 shot per week to keep the level low. I think its an interesting theory.
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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I am sorry Bicillin didn't work for you. Have you treated co-infections?
Hopefully others will join in and give their experiences with Bicillin.
Posts: 770 | From USA | Registered: Jul 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I used BIcillin for 14 months in combo with various meds and including cyst busters. had a small remission, and relapsing now. I was doing 2.4 mu 3x a week ....ouch
Posts: 3905 | From USA | Registered: May 2007
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quote: Also perhaps of interest - my LLMD feels that Bicillin operates under the radar of the borrelia given that a very low abx level is maintained over time. So it very gradually kills them off because they don't realize its there and don't go into defensive mode
Well I wonder how that works exactly , MIC and MBC concentration are typically calculated based on in vitro studies, I guess there might be the thing with low dose abx that it still might interferes with bacteria metabolism.
Albeit many studies strongly correlate sucess of treatment with abx concentration in blood - there are some cases where infection is still treated even though drug concentration are not sufficient, but there are many more failures usually in those cases.
quote: I used BIcillin for 14 months in combo with various meds and including cyst busters. had a small remission, and relapsing now. I was doing 2.4 mu 3x a week ....ouch
You did 2.4 x3 /week for 14 months?!? And you still could walk? How much you weight (muscle mass wise)
Posts: 856 | From MA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
coltman,
I am a small-boned person, and I have a small butt...not a lot of fat there.
However, I do 3 of the 1.2's every week, and I don't tend to develop obnoxious bumps or anything that prevents me from doing the shots. If I really feel around, there are spots where I can tell where I did my last shot, but since I rotate spots, it doesn't impact doing the shots 3 times a week.
So my theory is that it just depends on the person, whether or not you tend to develop scarring/bumps that are painful or make the shots difficult. Because I would have never thought I could handle 3 of these per week, but it is not a problem.
joalo,
I am currently about 6 months into using Bicillin. The best level of health I've ever achieved since having Lyme/co's was simply doing high dose Amoxicillin on it's own.
So I'm hoping Bicillin will be effective too. I am herxing/tired because of my babesia meds, but I bet if I was just on Bicillin, I would be feeling better.
So it's tempting to go off the other stuff, and just see what Bicillin on it's own would do.
Does anyone wonder if it's the anti-inflammatory effects of the med that is helping us? I just feel so good on the pennicillins, that it makes me wonder.
And I feel better sometimes very soon after my shot....or, if I would miss a dose of Amox, I could tell because I would feel worse. It doesn't seem like Lyme would be able to cause changes that quickly, so that's why I wonder if there is some kind of anti-inflammatory effect going on?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Yes, I was feeling worse yesterday and it had been 6 days since my last shot. Had my 3rd shot last night and feel perfect today. Amazing how quickly it works.
Posts: 770 | From USA | Registered: Jul 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
I've been on generic Bicillin 1.2 IU three times week for over six years. I was always scared to stop. About a year ago I ran into temporary supply problems and had to cut down to once a week for about five months. It did seem that I began to relapse at the lower dose and eventually returned to three times a week. I'm inclined to agree that Bicillin keeps Lyme suppressed and does not kill it off. However, given the relapse rate I've seen here, when people stop taking antibiotics regardless of the antibiotics used, I'll take that. It's the opinion of my doctor that we really don't know how to kill off Lyme once it has been established for a year or so. He says that in those cases, he has rarely, if ever, seen someone go off antibiotics and not relapse. Hence he avoids Flagyl as he sees the side effects not being worth it, especially the potentially permanent neuropathy. We just keep it beaten back with Bicillin only. It seems to be working fine. Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
That's the answer I knew in my gut was true, but didn't want ; )
I am also thinking Tinidazole, Flagyl maybe something that is not worth enduring if everyone relapses.
I can't seem to get a straight answer out of my LLMD, but I am guessing he is thinking along the same lines. Guess it makes sense to do the Bicillin for 6-9 months and then move into the lowest dosed pulse orals (Doxy, Zith) that keep me functioning. I was doing really well on pulsed low dose Doxy, Zith but dropped the doxy because of stomach problems. Downhill after that.
I am wondering what the long term effects of that much Bicillin might be? I know it is processed through the kidneys.
David - Has your kidney function been ok all this time?
Posts: 770 | From USA | Registered: Jul 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My labs all look great!
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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quote: I've been on generic Bicillin 1.2 IU three times week for over six years.
hrmm thats a dreary perspective. Are you feeling better at least? Honestly though I d think most of the cells infected in this period of time should have died in 6 years and replaced by new ones (by natural cytogenesis)
And while some type of cells (nerves ,cardiac and skeletal tissues) persist for long time I d think overall the load should been brought down if it had inhibitory effect.
Posts: 856 | From MA | Registered: Jul 2009
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posted
Yes, I don't get it either. We are dealing with a very strange bug. Or bugs for that matter!
Posts: 770 | From USA | Registered: Jul 2006
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posted
I tried to post yesterday and lost it so I'll try again. I was on 2 shots per week for about a year and was able to go off for about 6 months.
I felt pretty good but knew I wasn't well. Just needed a break. I went back on them for about another year or so till I lost my dr. about 2 1/2 months ago.
I did feel the best I've felt on them. I could do things I hadn't done in years. Now I'm at the point of having to decide what to do again.
I'm really struggling making a decision. Either I could go back on them and feel better knowing I will probably relapse again or I can try to find something else.
I did only take the bicillin and no other abx so have wondered if I needed to add something else.
Also, I think I have some coinfections maybe and that's why I relapsed.
I also just read here that sometimes going off bicillin can bring out the co's, especially bart. I'm thinking that may be what has happened in my case since I've just had a strange rash that resembles a bart rash.
Posts: 495 | From KY USA | Registered: Dec 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Coltman, actually, I've gotten used to it. and am basically asymptomatic so to me it's worth it.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
I have been getting 2 1.2 bicillin shots since April '08 (that's 19 mos.). I have made, what I think, is great improvement in that time.
I started off weekly and now my LLMD is seeing how far she can stretch out the shots.
If I do well I will eventually get off the bicillin (I hope that makes sense). I, also, take plaquenil and a ton of sups (all recommended by my LLMD).
I am up to getting the shots every 3 weeks for mos. now (can't remember how many). We stopped advancing the length of time, because I got some old symptoms back.
I want to go back to every 2.5 wks., I was feeling good on that.
My LLMD told me she has some patients up to every 6 wks. She, also told me that bicillin is what made her better (and you should see her go!).
posted
Hi Everyone, Just started Bicillin 3 weeks ago. The fungus went mad. I have serious fungal issues.
My question is that my Dr. told me NO WAY take it in the butt and has me take it in the side of my leg on the middle meaty part. He said you can get nerve damage with that strong of penicillin.
Anyone have this experience? The leg is a hard way to go.
Thanks, Truesun
-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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quote:Originally posted by Truesun: Hi Everyone, Just started Bicillin 3 weeks ago. The fungus went mad. I have serious fungal issues.
Do you take nystatin and probiotics?
quote: My question is that my Dr. told me NO WAY take it in the butt and has me take it in the side of my leg on the middle meaty part. He said you can get nerve damage with that strong of penicillin.
Nerve damage can happen with anything - typical causes: mechanical damage (needle hits the nerve) , drug is injected near nerve (most abx damage nerves when injected near it) and worst one hitting the artery or vein - some drugs cause necrosis and all kind of other damage so in vein they spread and wreak havock , which may lead to paralysis due to damaged nerves. This is one of the scariest thing you can get from IM. But its also very rare and is avoided by using proper technique (proper sites and aspiration)
It does look very scary on paper but IM administration is incredibly widespread and complications are rare ( I assume in many time caused by negligent medical professionals as I read that often those "professionals" not doing aspiration, injecting in wrong sites etc), as you can even see in this thread people been doing this stuff for years. Only thing I do not like is that with heavy stuff injected with big needles in large volumes (like bicillin) scaring, fibrosis and bumps can happen when its done on continuing basis. It kinda sucks as this is essentially long term damage (possibly even permanent in some cases)
Generally use "safe" site (dorsogluteal = upper left quadrant of the buttock, ventrogluteal - side of the hip ,the one your DR prolly talks about) and always aspirate so it never hits blood vessels. So you have essentially 4 sites to rotate - hips and glutes. It is in theory possible to use other muscles, but its harder to avoid nerves and blood vessels in other place , hence why generally those 4 sites are used
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