My recovery has been good so this may be helpful to some of the newer people.

Two and a half years ago, my health had deteriorated for ten years to the point not having the strength to walk uphill. My hands were so painful I had trouble turning doorknobs. My shoulders were so painful that reaching for things was difficult and excruciating. In short, I had about thirty-five of the thirty-eight symptoms on the symptom list.

I started on Bicillin and Biaxin in February 2003. It took several months to get any noticeable improvement. The three month herx was brutal! By summer, I was having days in which I felt normal but a lot of bad days too. By the end of 2003, my improvement was pretty good and in the summer of 2004, I started building a house.

I had contractors build the septic system and a shell. From there I took over and put on a 4000 sqare foot roof, did the plumbing, wired it with 3000 feet of wire in January of this year. Amazingly, everything worked. Someone else hung the drywall as it is just too heavy for me at age fifty five, height of 5' 8" and under 140 pounds.

Well, I'm living in there now. The drywall is only partially finished but I have air conditioning, two bathrooms, and a kitchen finished.

I continue on Bicillin and Biaxin as the combination has worked well for me and my doctor has seem almost no one who has been this chronic go off of antibiotics without relapsing.

So, there can be life after Lyme. I feel like I got a second chance.

Be well and hang in.

David

Bicilllin LA and Biaxin is the combination I have used since starting treatment. No IVs.

I take Bicillin 1.2 IU three times a week and 500 mg. of Biaxin (Clarithromicin) twice a day.

I am so happy for you! Thanks for sharing this news of improvement; I know that it helps all of us to keep that positive energy going!

Congratulations on the home- that is a HUGE accomplishment!

If you feel up for it, would you mind posting your progress here?
Success Stories: http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Thanks for sharing...it is encouraging to all of us.

Are you back to your normal self now? Or just having more good days?

It's nice for me to know that it took some time before you saw noticable improvement.

This is excellent news. I started Bicillin/Artemisinin in early June, added Biaxin in late June. After a couple of weeks, had significant improvement for a couple of weeks, now have slid back but hoping it's die-off.

I am curious as to the reason that you do 1.2mu Bicillin three times/week. I am doing 1.2mu weekly. When I asked my doc, she consulted with Dr. S in San Francisco who said his experience is that anything above 1.2mu once per week is overkill, that the MIC of the L-A is such that it stays high enough.

I would be very interested to know why your doc has you doing it three times per week, if you wouldn't mind sharing that information.

Also, have you considered adding Artemisinin? It has been observed to be a good cyst buster in conjunction with penicillin.

Great of you to post your success. Very encouraging.

The reason I take Bicillin three times a week is that it follwos a protocol Dr. B. (THE Dr. B.) has suggested.

Some patients of Dr. S. (in SF I presume) have reported he has been very reluctant to start using Bicillin. East coast docs have been using it for years and, I believe, he started using it this spring after repeated patient requests.

As I have been doing well and incredibly busy, I haven't even thought about artemsin. Thanks, I'll look into it.

I did not realize your house
was so Big--you must be feeling
Great to be able to handle such
a Huge project--

I dont know if this is possiable but
I would like to see some pictures
of you handy work posted here--

I think some pictures would
help give people more hope
and insperation-
I know it would me.

I was finally able see a LLMD and
had some tests done-My Doc is
Very Bussy so things are going
a little slow -- But I think
thing are going to start rolling
soon--

It seams the the Bicillin shortage
has let up--Is this the case?

I am Very Happy to see you are
doing so well-

David
-Thanks for your help--Jay--

Ps I have a funny house story--
I rented a house that had the
hot water hooked up to the
toilet-- When I had parties
and the toilet got alot of use--

Steam would come out of it--
This always made for a few
good Laughs-

Amen Lou!

Yes, please send a note to the Gov of Pa. stressing your success story and fact that we currently have no optional and EFFICACIOUS TREATMENT MODALITIES for chronic Lyme other than LT ABX.

We're in the process of seeing a new doc for my chronic 15yr old son and getting back on abx...and I'm wondering if many kids have been treated with Bicillin IM. Sure seems to be helpful to some.

The Lyme Disease Network
Conference Abstract

Title: Intramuscular Bicillin For Persistent Pediatric Lyme Disease
Authors: Corsaro L; Montemayer M; Fallon B
Conference: 9th Annual International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders, Westin Copley Plaza Hotel, Boston, MA, April 19-20, 1996
Presenter: Louis Corsaro, M.D.
Northern Westchester Hospital
Columbia University, New York City

Abstract:
Steere et al ('85) reported that 3 weeks of IM benzathine penicillin led to a complete resolution of Lyme arthritis in 35% of patients. Cimmino and Accardo ('92) reported two cases of adult patients with chronic Lyme arthritis resistant to the recommended antibiotic regimens who were cured by 2-6 months of treatment with benzathine penicillin. Based solely on these reports, the use of IM Penicillin among patients with persistent Lyme disease has become common. As a preliminary study of efficacy, we conducted a chart review and follow-up of all patients with seropositive Lyme disease treated with IM Bicillin in a private pediatric out-patient office in a Lyme endemic area between 1993 and 1995.

Methods: The diagnosis of Lyme disease was based on at least one seropositive test and typical articular or neurological symptoms. Treatment consisted of either Bicillin LA or CR 1.2-2.4 million units administered weekly. Relapse was defined as the return of any symptoms which required greater than two weeks of Abx treatment. To assess efficacy, the longest period without symptoms prior to IM Bicillin was compared to the symptom free interval after bicillin.

Results: 61 charts were reviewed of which 25 met study criteria for seropositive Lyme disease. Mean age at time of chart review 11.9 +/- 4.4 years. Mean age at time of Lyme disease onset was 9.4 +/- 4.3 years. Mean duration of symptoms prior to the administration of antibiotics was 16 +/- 32 weeks. All patients failed to sustain improvement after courses of oral antibiotics ranging from 4 to 22 weeks (mean 25.9 +/- 29 wks; median 14 wks). Five children received IV antibiotics and all failed to sustain improvement despite having received 4-27 weeks of IV treatment (mean 9.6 +?- 9.8 wks; median 6 weeks). The longest period free of clinically significant Lyme disease since symptom onset and prior to receiving IM Bicillin ranged from 0-76 wks (mean 60.2 +/- 84.2 wks.; median 8 wks). Of the twenty-five patients given IM PCN, the mean duration of IM treatment was 4-38 weeks (mean 14.5 +/- 8.9 wks; median 10.5 wks). One was still receiving treatment at the time of follow-up and another was symptom free having just completed treatment. Of the 23 children available to assess relapse after treatment, 19 were symptom free, 3 had mild symptoms that did not require treatment, and 1 relapsed and was being retreated. Among the 22 relapse free children, the follow-up period ranged from 2 to 62 week (mean 27 +/- 15.5 wks; median 22 wks). Seventeen of the 22 children had exceeded their longest relapse free interval prior to IM Bicillin, 14 of whom had been relapse free by more than twice the duration of their pre-Bicillin relapse free interval.

Conclusion: A chart review and follow-up studies suggest that intramuscular Bicillin may be a particularly effective treatment for children with antibiotic refractory persistent Lyme disease whether previously treated orally or with
intravenous antibiotics.

Unique ID: 96LDF025

The Lyme Disease Network of NJ, Inc.
43 Winton Road
East Brunswick, NJ 08816 http://www.lymenet.org/

I remember you. Thanks for reminding us that it takes awhile to get better.

I have to remind myself of symptoms that I DON'T have anymore.

It is a slow process sometimes. Having had lyme for 11 years, treated with abx for

2 years and now off abx for over a year, I am much better than I was.

(now mostly dealing with systemic yeast stuff yet)

I just looked up an old thread that I had saved that you began in 2003 - right about the time you were beginning tx. You asked if anyone knew anything about "Dr. Cameron's study on long-term Bicillin therapy that started last year" (2002?)...do you know more about that study? Would certainly be interesting to find out how it went. I'll try a search...

I have mentioned IM therapy to my son as a possibility. He didn't react strongly to the suggestion one way or the other, but didn't rule it out if it might help. He's been through so much treatment-wise that he's fairly jaded at this point. He's really thin now and has lost muscle so I hate to think of sticking him. I know there was a discussion at some point about the best way to give the shots, but can't remember the details.

How do feel about it and cope with the shots? Obviously if it helps it creates a great incentive!

~Nancy

quote:

---

Originally posted by blackmon:
He's really thin now and has lost muscle so I hate to think of sticking him.

---

Nancy -- my husband was in the same boat when we started the bicillin shots -- no butt! I was afraid the needle would go through to the bone. But it all worked out fine. At first, I only put the needle in 3/4 of the way. It's much easier now -- he's been able to work out for 6 months (been on bicillin over a year) and there's more muscle to work with.

Bicillin proved to be one of the easiest meds we've ever done. We're on the 2-shots-every-5-days schedule, which I really like. For us, there's very little pain with the shots. We use an ice pack for about 15 minutes before the shot, warm the shots up to skin temperature (I put them in my armpit to warm up) and inject very slowly, about a millimeter at a time, count to 5, another milimeter. I read to distract myself while I'm getting the shot.

This thread has some excellent how to info and a link to a nursing manual about how to give IM shots. http://flash.lymenet.org/ubb/Forum1/HTML/020465.html

There has been no more information that I know of on that study. When I spoke with the doctor, he was having trouble getting enough people to participate.

Given that your son has had a number of treatments that have not been totally effective, it might help him to read the abstract himself so he can participate in the decision in a reasoned way. If you search Bicillin in the archives, it seems to me that it is the medicine that has been most effective for many. Your son could read some of the posts.

Some of the advantages are Bicillin's good track record, only having to take it once or twice a week rather than remembering to take pills several times a day, no stomach upset as with pills, no need to stay dry as with IVs.

It seems that the main disadvantage is that it is an injection and that puts a lot of people off. Some teen age boys would be pretty uncomfortable with having their mothers inject them in the butt, and it has to go there particularly since he is thin, so that might need to be negotiated. In my opinion, the shots aren't very painful and it is possible to add lidocaine although I have never bothered with that.

I started taking allergy shots in 1984 so I have no emotional response to injections. It may be that staying calm actually causes them to be less uncomfortable. It's also critically important that recipient not clench the muscle as that will dramatically increase the pain and cause a knot.

He's become pretty used to needles over time. Blood draws are a piece of cake and he even did OK with hep-locks before we had a port put in (it has since been removed). He's not had many IM injections but I suppose he would deal with that as well. I'm just so glad that he's older and braver...it was so hard when he was very young!

If we end up going this route, I will e-mail you...thanks.

Minoucat, thanks for your input, too! It's good to know that skinny butts can hold their own! So glad to hear that you and your husband are improving. Have been intending to respond to your e-mail from last month - it was very helpful.

Cootiegirl, really good to hear of your improvement as well!

It does seem that in the last six months or so there are more of the "chronics" (for lack of a better word!...what about "chrymies"?) who are seeing improvement...so gratifying to hear! Seems to me that treating with multiple abx and targeting co-infections is making a difference...also sticking with a regimen for four or more months before giving up on it.