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» LymeNet Flash » Questions and Discussion » Medical Questions » Bicillin Shots work for ANYBODY???

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Author Topic: Bicillin Shots work for ANYBODY???
jenschasinglyme
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Hi guys,

I have been in treatment now for a year in a half, 14 months of that on IV after going undigagnosed for a little over a year.

I am a 27 year old girl who got this when she was a 25 year old fitness model.

Why am I not responding better to treatment. I feel I am in a constant herx.

Went from being on flexeril beg. of treatment now on a host of narcotics and benzo's.

No, I don't have the bio-toxin gene.

10 months of it on treatment with Mepron,art and zith, some plaquenil here and there including a month in half of straight Tindamax.

I still am waking up with claw hands and have terrible arthritis.

My LLMD feels the Lyme is still very strong. Should I leave the IV longer then 14 months with Rochephin...STILL???

Should I try some Bicillin??? Positive experiences with long term use...anyone???

Thank you for your help everyone.

God Bless

Jen

Posts: 111 | From San Francisco | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
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Hi Jen,

I have been using bicillin shots for 5 months. I think it has helped in clearing some cognitive issues and I feel that my energy level has increased since starting bicillin.

I also started low-dose mino before the bicillin, and plaquenil around the same time as the bicillin. My response to bicillin has been good enough to stick with it for the time being.

Personally, if I felt that any treatment was not working after 14 months, I would change that treatment. You and I have both been in treatment the same length of time, a year and one-half. Although I have made progress in the last 18 months, I still feel like I am herxing too! My doctor says, and I agree, that is OK as long as the overall trend is a good one.

Jen, if you are on a host of narcotics and benzo's, then your doctor will need to work with you and take great care in changing medications. Please watch for dependency issues. Take care and I hope you feel better soon.

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David95928
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I've been on it five years and have to say that it seemed that I herxed, albeit less and less frequently with less and less intensity, for about four years. Bear in mind I went untreated for at least twelve years.
Dave

--------------------
Dave

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CaliforniaLyme
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P & G in our local group have had good experiences with it. P is very private and I wouldn't feel comfortable giving you her info but G I am sure would be fine with it if you wanted her email!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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jenschasinglyme
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Thanks everyone for the responses.

David- the whole five years..has it helped get rid of any symptoms??

I need something for the arthritis.

I even have arthritis in my damn ear.

I still am getting my claw hand.

Is'nt IV really suppossed to help with this stuff??

I don't have very many cognitive issues.

Alot of neuro physical ones though.

If anyone else could chime in here...

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lymebytes
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Hi,
I used Bicillin and it worked well as long as I could tolerate it. Since I herx very hard and found it overwhelming, I had to stop after only 7 shots. Since I have been off of it and back on orals, many symptoms are returning, I didn't last long enough and will likely try it again.

Please remember, it takes 1-5 years to get well. I have been in treatment 20 months and have progressed like a snail.

Hang in there, do what you can and in time things will start changing.

FYI: Some LLMD's like Biaxin better than Azithro, if you do Bicillin this would be a good choice of oral abx to do with it, Biaxin has helped me.

I am not a doctor, but if this were me, if Rocephin hasn't worked in 14 months, I'd possibly ask to try a different IV, azith, doxy or one of the penicillins. I also understand that follow up after IV must be very specific. Bicillin is a good follow up choice I have heard.

I always thought everyone got well on Rocephin, but have met a few people lately it did nothing for.

I hope you nail the right combo and start getting well.

Take care.

--------------------
www.truthaboutlymedisease.com

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WildCondor
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Bicillin LA shots are awesome. I took 1.2 MU 3-4x per week for over a year along with other combinations of antibiotics and it was a wonderful treatment. The best combo for me was Bicillin plus Flagyl (pulsed) plus Biaxin 2,000 mg/day. Also, IV Zithromax, or oral plus Mepron +Artemesia for Babesia along with Bicillin.

The stuff is great. [Smile]

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David95928
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Jenschasinglyme,
At this point I'm pretty much free of overt symptoms. I've realized that I may never be as quick witted as I used to be and have fatigue if I let up on my B vitamins and spasms if I let up on magnesium. As long as I keep up with what has worked if feel pretty good most of the time. This abstract may interet you.

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.

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.

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--------------------
Dave

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CD57
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Jen, curious...why did you do IV after 4 months treatment with no neuro problems? Just curious...usually you hear that it's prescribed for neuro cases.

I'm on Bicillin, 2 months now. Has definitely helped.

I was just reading about cat's claw/samento and how useful it is for Lyme arthritis. Could you suggest that to your LLMD?

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cottonbrain
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Jen, you said you do not have the gene for biotoxins, I guess you mean the HLA-DR4 gene?

Have you been tested for RA? There is also a genetic variation that makes some people predisposed to severe Rheumatoid Arthritis--

I am really hoping you do not have this, but it is something you can check if you are concerned.

peace.

cottonbrain

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CaliforniaLyme
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She did have neuro stuff- clawhand for one!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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jenschasinglyme
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What Sarah said, CLAW HAND for one, foot drop for two and then I was put on IV 10 weeks on orals I developed Bells Palsy on the same side of the claw hand and foot drop.

I should have been put on IV after 30 days of doxy. I had FULL ON MENNINGITIS SYMPTOMS!!!

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djf2005
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check for virals.

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

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jenschasinglyme
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Have been on Valtrex for over a year due to a HSV-1 and HSV-2 infection that does'nt waver.

Thanks for the info though.

Keep them comin.

I need all the help I can get.

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janet thomas
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when u say IV do u mean rocephin? dosage? and what else?

have you been treated for any co-infections?

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I am not a doctor and this is not medical advice but only my personal experience and opinion.

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jenschasinglyme
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PROTOCOL FROM THE START:

30 DAYS DOXY

H.PYLORI FOUND - AMOXY AND BIAXIN

BELLS PALSY - HOSPITALIZED AND PUT ON IV ROCHEPHIN

DR.S PUT'S ME ON VATREX AS WELL FOR FOUND HSV-1 & HSV-2 ACTIVE VIRUS

3 MONTHS OF IV - PICC LINE PULLED

START TREATING BABESIA WA-1

3 WEEKS LATER BELLS PALSY COMES BACK

PICC LINE BACK IN (BELLS CLEARS UP)

SEE DR. H

GO ON PLAQUENIL AND TINDAMAX IN ADDITION TO MEPRON, ZITHRO AND ROCHEPHIN. ALSO START PULSING 4 GRAMS A DAY 4 DAYS ON, 3DAYS OFF.

GO TO CHICO FOR HYPERBARIC, 17 DIVES, LOSE GALLBLADDER AND STAPH INFECTION CULTURED FROM BLEEDING EARS THAT HAD BEEN BLEED FOR THE PAST PRIOR 6-7 MONTHS.

RIFAMPIN FOR 2 WEEKS, ZVOXX FOR 2 WEEKS (ALL FOR THE STAPH) THAT IS CULTURING GONE BUT WHO KNOWS??

NOW DOXY ALONG WITH PULSED ROCHEPHIN AND MEPRON AND ZITHRO.

HELP? SUPER ARTHRITIS, MUSCLE PAIN AND IT FEELS LIKE MY EAR IS BEING SCREW DRIVEN IN ALONG WITH MY DYSTONIC CLAW HAND.

ONCE AGAIN - INFECTED NO LONGER THEN 14 MONTHS AT THE MOST. REMEMBER BITE HINDSIGHT IN ADDITION TO RASH AND INCUBATION (LATE SUMMER FLU) IN MID SEP. OF 2005.

DIAGNOSED END OF SEP 2006.

ONCE AGAIN- NO BIO-TOXIN GENE. HYPOTHYROID AND BEING TREATED FOR IT. 102.1 FEVERS STOPPED AFTER 8 MONTHS OF MEPRON.

ANY SUGGESTIONS GUYS?? YOU ARE THE PRO'S!!

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Ellie K
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Wow, you have been through a lot. I have been on Bicillin 2.4mu/week since the end of August. (Prior to that, I was on Rif and Levaquin for Bartonella.)

By the way, I'm really not sure when I first got infected. I think there may have been multiple bites. I ran a 100 degree fever daily throughout law school, and finally crashed this past March, ending up in the hospital and barely being able to graduate...

But anyway, I have mixed feeling about Bicillin. I herxed very hard on it. I found the herx more tolerable than Rifampin or Mino, but that's not saying a lot.

I find the shots easy to administer myself and relatively painless. Much more convenient than pills.

Over the past 5 months, Bicillin has takin away my intolerable ear pain/pressure, which used to be one of my worst symptoms. I also rarely have that godawful "brain squeeze" sensation at night. It was terrible. I felt like Bicillin got into my brain stem and started moving things around, if that makes any sense at all.

It is the only abx that I've tried that has not caused horrible barfing.

But many neuro and non-neuro symptoms remain.... Arthritis popped up last month-- pretty minor but not encouraging. Dr. S. says its part of a herx.

My fatigue is actually MUCH worse-- I am herxing on MEpron right now, so that could be the cause. I also have a pretty long list of add'l symptoms that I won't bother you with.

I am going to do 2 more months of Mepron and then IV Rocephrin, which I am excited for. Seems like we're actually approaching treatment in reverse ways.

By the way, I'm 26 (pretty close to you.) I used to run ten miles a day. [Frown]
Good luck!

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TheCrimeOfLyme
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When I hear arthritis type symptoms and burning ear syndrome, BARTONELLA comes to mind. Two weeks of Rifampin ( even though it wasnt for it) wont work.

I would try to not leave that coinfection out of your treatment loop.

--------------------
You want your life back? Take it.

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TheCrimeOfLyme
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I also meant to say:yes, bicillin worked for me. It was my first remission and it lasted for a year.

I would go back to them, but I swear my butt still has lumps in it to this day [Wink] . I am doing just great on orals and I have hpylori as well ( did you have HORRIBLE stomach pains?) ugh...

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You want your life back? Take it.

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