I am 5'-3 1/2" and about 117 lbs, with not much meat on my bones. My nurse rotates the injection sites between my buttocks and my hips. She is concerned about me being on this Rx for too long. So, I'll see my MD in a couple of weeks to discuss it.

Just curious, how long have you all been on this protocol? And, are you seeing significant improvement?

I believe I was thin at the time I was doing bicillin injections and after the firsst month it was 2x a week.....

you just have to rotate the site.... I did end up with alot of lumps ....but they went away eventually.

It was years ago so i really dont remember how much it helped.

Is it safe to assume that since you are still on this forum that the Bicillin did not "cure" you of your Lyme?

What is your protocol now (life after Bicillin IM)?

1.2m once a week I presume? If so should be sustainable for quite awhile with good care of the muscle. There is some collateral damage that is to be expected.

Firm pressure on the injection site for 5 minutes after the shot really cuts down on bruising, by the way.

Having said that after the bicillin I might have tried a few orals than I went on IV...

I was getting better BUT I had alot of complications....
some of them were...

piccline was put in my heart -couldnt breathe right for months so lyme got worse...

had a cold for a month (lyme symptoms get worse when I get sick...usually dont bounce right back)

liverenzyme issues(had to go off antibotics a couple times for a little bit... got much sicker)....gullbladder problems than surgery ....

gastroparesis....c.diff..

all these (and a few others)complications for over a year.

thats alot of it ... it was one thing after the other.... so dont judge a meds effectiveness by my experience.

Right now the symptoms are so bad I'm also in pain management and even with that I still cant do very much....

I mostly lay and watch tv.

right now I'm on cefzil and flagyl 500mg each 2x a day.

it has helped the muslce pain a little and the flashes of light have dissappeared..but i still have some really dehibilatating symptoms (mainly pain and fatigue).

Just so you know I found that alot of nurses werent familar with long term treatment for lyme.

Also I take a multivitamin... b complex.....mag/pot... acidolphilous.. s.boulardii....profactor plus

and I'm starting to take milk thistle, msm, and glucosimine chondriton(sp?)... I had to stop for awhile due to stomach issues.

Please dont get discouraged by my story many people just get better without having all the complications.

best wishes

[This message has been edited by AZURE WISH (edited 01 November 2004).]

I have been on various protocols for 2 years now. IV Rocephin and IM Bicillin have been the ones that I have seen the most improvement with.

Your story sounds very complicated, as you say. I wish you well and hope that things start to improve. You are a trooper!

James: Yes, my Dr. just told me to cut out the jogging (short) and cycling (also short distance) because he says I am "over doing it". He said to walk, as you say. I used to be very athletic and I tend to overdo it when I have good days. Your suggestion is well taken.

I am doing 2.4 units each week. I have it in 1.2 units - one in each cheek at the same time. The 2.4 dose needle was too long for my boney arse.

Cave: I hear you about the overdoing it. I feel like a little kid in a penny candy store when I have those good days. Never felt that on orals and, the IV was such a pain, had to be too careful.

Thanks for all the responses so far. This is very helpful.

Bc

Were you on other abx as well as the Bicillin? Or just the same abx, Bicillin???

I'm curious because my LLMD, Dr. C of MO, has prescribed 6-8 weeks of Bicillin, which I believe is a significant amount.

I've done 6 shots with two weeks off from severe herxing. I plan on doing 10 shots total because I had to buy them in sets of 10. 10 seemingly being a large amount of treatment.

I've done really well, well with considering the fact that I had some really hard herxing. I do believe that my response has been greater than most of the other abx that I've been on in the past...including Rocephin (yuk, yuk and what a mistake that was and prescribed by my PCP before I got to a real LLMD who would not have put me on Rocephin in the first place), Doxy, Biaxin, Flagyl, Clindamycin, Rifampin, Zithromax and I'm sure a couple of others thrown in there.

My LLMD says that he is having a 15% BETTER response to Bicillin over orals and an even better response, I think, than Rocephin.

So, with that said, I really believe Bicillin is the best in the arsenol against Bb. And, even though I am currently on Diflucan, I haven't had any problems with yeast that I had in the past with those (listed above) other abx.

You pretty much summed it up.

My MD is of the school of thought that I continue on a med until I plateau. I did very well on IV Rocephin, then my improvement leveled off - I didn't get worse though. I am doing progressively well on Bicillin and Mepron. So, I think he will keep me on this until I get to a point where I am either well or have stopped improving significantly. We have tried various orals but, I simply cannot tolerate the gastro side effects. The parenteral meds seem to work well for me.

I think I was just looking for some reassurance that others have done a lengthy course of this and wondered about possible tissue damage from the injections. At 16 weeks I still feel like a Bicillin Newbie.

Like the MD you mentioned, I also met a woman who was on IV for years back in the late 80s. She is now well and has not relapsed. The treatment was aggressive but, she says it saved her life.

I have certainly learned patience and have stopped to smell the roses with this disease. Time is no longer an obsesssion.

I wish us all well and hope to see more progress reports with Bicillin.

Bc

The only real stress is on the tissues it is injected into. Care with site selection, rotation, and injection technique can minimize the damage.

A comment about site rotation: Nursing manuals tend to show how to locate the correct spot for a SINGLE INJECTION. 'X' marks the spot. The possibility that it might be necessary to give REPEATED injections is not given much coverage in training.

The 'buttock' (dorsogluteal) site is actually an 'area' where it is safe to get a shot, so there is room for some site rotation within the 'site'.

If you look at this diagram it is basically the area of muscle outside the dotted diagonal line. (The older method of dividing the buttock into quadrants is also shown.)
Diagram for Dorsogluteal IM

The 'hip' (ventrogluteal) site is not as large, but there is still some room for variance.
Diagram for ventrogluteal IM

If you can vary the injection locations somewhat there should be no problem for as long as you need to take it. (Some of us are taking alot more than that without problems.)

The important thing is that if the spot intended for the injection still has a hard lump from the last one, you do not want to give another one into the lump. That WILL cause scar tissue! Your nurse sounds concientious about not harming you. If that happens just have her(?) feel the muscle for a more suitable location within the safe area.

The hard lumps are usually caused by bleeding into the tissue after the shot, so that is why keeping a little pressure on the site for a few minutes after the shot is so helpful.

Aside from a little collateral damage to the posterior, this is a very low dose, non toxic form of treatment.

Being too sick with antibiotic side effects to work is not an option for some of us. This has worked well.

I have been improving steadily. Now I can sleep 7 hours with one time waking up and only one wet T-shirt (night sweats). I have been herxing 24 hours after the Bicillin injection, but the reaction has become less and less. The last three weeks there has been no herx. I take that as improvement. I also think that the Zith/Mepron has helped against Babesia. My LLMD said that I can stop the Bicillin shortly but I'd rather continue a few months (I have 9 shots left, why not finish it?) in order to make sure to kill as many as I can.

In the beginning I did 2 times 1.2 mln units per week (2 shots together) but my LLMD said that the difference in taking 1.2 mln or 2.4 mln units is only marginal.

The Bicillin is a very low dose abx. It does not attack the skeets agressively. If you attack them agressively it changes shape into the cystic form. That's why Bicillin takes a long time but you get good results.

I am supposed to start on Ketek in a few weeks.

Ciao,

I'm sure when you posted that link that you didn't realize that this would happen. I am only trying to give you an option as I'm sure you didn't mean for the post to come out this way.

I just cannot do that...if I reduce the size of my text any smaller, then it is too small for me to read without a magnifing glass.

Would you pease reduce the link that is too long, the one that is now making this post go over the limit of the screen?

I am not critising, please, you just didn't know, I'm sure.

Here's how to do shorten a link where is will keep the text within the boundries so we will not have to scroll back and forth, back and forth and lose where we were reading.

http://flash.lymenet.org/ubb/Forum5/HTML/000246.html

and, here's another way:

http://tinyurl.com/

Thanks,

You can try to reduce it from your task bar, probably in the Views or Tools section. I think there you can reduce the link by any percentage to fit your screen size.

Also, you can go into Control Panel, hit Display, and change your preferences there so that the larger links fit your screen display. However, you are right, that will reduce the font size proportionally.

Hope this helps those who may be having trouble with the link scales.