Re: Rocephin

November 23, 1998

Hi Lovette,

I was on IV Rocephin last year. I only did a month's worth. I felt awful

while on it and awful right after it; but then about a month later I felt

better than I had in the past 5 years! Unfortunately, I did relapse and may

need to go back on IV. I am hoping I can do it for longer than a month this

time, as I feel it might be the answer for me to go into a decent remission.

I'd like to at least try that approach! Good luck to you and be

patient.......you may feel worse before you feel better. I'll be hoping for

better days for you!

Hugs,

Chrissy Ü

In a message dated 11/23/98 7:47:28 AM Eastern Standard Time, smott@...

writes:

<< Dear : Is the Rocephin working for you? I have 1 1/2 more weeks

of a 6 week course to go, and I don't think it has helped. I am more

tired and more photophobic than when I was on oral doxy. I'd be

interested to hear what your reaction has been.

Lovette

>>

November 23, 1998

Dear : Is the Rocephin working for you? I have 1 1/2 more weeks

of a 6 week course to go, and I don't think it has helped. I am more

tired and more photophobic than when I was on oral doxy. I'd be

interested to hear what your reaction has been.

Lovette

November 23, 1998

" F. Mott " wrote:

> From: " F. Mott " <smott@...>

>

> Dear : Is the Rocephin working for you? I have 1 1/2 more weeks

>

I would like to think so, but I have only seen small changes so far.

Involuntary finger twitching has stopped. Sometimes I can barely move my

fingers and cold seizes them up completely. I had my first herx 20 days into

IV and I have herxed regularly every two to four weeks since. Feel like I

went through the meat grinder and my butt muscles become extremely painful.

Goes away after three or four days, just back to feeling rotten. I have had

a few days and hours where I felt great and thought I was on the road to

recovery and then pow back to blaaaaaaaaaaaaaaaaa!!!!!!!!!!!!!!

> of a 6 week course to go, and I don't think it has helped. I am more

> tired and more photophobic than when I was on oral doxy. I'd be

> interested to hear what your reaction has been.

>

The first thing I noticed on IV Rocephin is that it made me tired. For me

this has gotten worst as time goes on. Tired all the time, no strength,

extreme weakness, have to sleep most afternoons for a while. Can kind of

walk then barely move,

changes a lot. fog is thick then kind of lifts. The worst for me is

the profound weakness and having no strength in my hands.

I was told by some lyme experts this was going to happen so you just have to

keep the faith that it will improve. They all said it was going to get a lot

worst before getting better. I SURE HOPE THEY ARE RIGHT!

I have been doing a lot of supplements and have regular liver, gallbladder ,

and other blood tests done. So far all is normal even after 83 days of

rocephin. No lyme literate docs here so I am steering my own treatment with

the help of a real great gp doc who wants to learn.

>

> Lovette

>

> ------------------------------------------------------------------------

>

November 24, 1998

Hi and Lovette,

I know that when I was on Rocephin, I did not feel really good until two

weeks after I stopped it. I think Chrissie mentioned this same thing very

recently....so look forward to feeling good real soon....and here's hoping

you killed all those spirochetes with this round of Rocephin,

Hugs,

Marta

--

October 19, 1999

In a message dated 10/19/1999 3:56:32 PM Eastern Daylight Time,

elsbeth@... writes:

<<

What's your experience been?

>>

beth, unfortunitly I hav been having problems with my IV lines and hav

missed 2 days worth, so total I have only had 5 days worth. Tomarrow I will

get a picc line put in so hopefully i can get the proper dosage. Today was a

very bad day, fatigue, neck pain and stiffness ect.

Deb- Richmond VA

Husband hunts on deer populated area, this where I believe the tick came from

First contracted Lyme 1989, bull's eye rash on stomach, flu-like symptoms,

treated with Doxy for 21 days and recovered.

Re-bitten in Sept, 1998, ringworm like rash, flu-like symptoms in 11-98, went

undiagnosed until Aug 1999, symptoms multiplied and become worse. Started on

Amoxicillin 500mg and Probenicid 500mg, developed an ulcer. I am now taking

IV Rocephen

October 19, 1999

Deb and anyone else who's had experience w/ IV Rocephin - I'm in my 6th week

of IV (PICC line) Rocephin and I am utterly, totally and completely wiped

out. Many of my other symptoms have abated BUT in the last couple of weeks

the fatigue has become debilitating. My recent blood results are o.k., liver

enzymes are up a bit, so my doctor thinks I should continue although neither

he nor I know how much the fatigue is a side effect of the Rocephin, the

disease itself or a herx. I suspect it's largely a side effect. He would

like me to do another 6 weeks of it (if I can take it). The fatigue has been

so bad I've considered quitting.

What's your experience been?

Be well all,

beth

October 19, 1999

beth-

I was on Rocephin IV for 8 weeks in the begining of my

treatment. The fatigue was horrible during the

infusion but I would sleep during that time and then

wouldnt feel too bad after I woke up. The worst of it

for me was the fog. Not sure if it was really fatigue

in disguise or if it was real brain fog.

The one thing I noticed was that it HELPED with all

the pain in my back and neck. Nothing Ive been on

since has done that. Im now on Doxy and Flagyl and

feeling like crap!!! Not only the fatigue but

everything is worse. Started the Flagyl last Mon and

see my doc tomorrow. Id say hang in there if you can

for as long as you can get the IV.

L (MI)

--- beth Feldman <elsbeth@...> wrote:

> Deb and anyone else who's had experience w/ IV

> Rocephin - I'm in my 6th week

> of IV (PICC line) Rocephin and I am utterly, totally

> and completely wiped

> out. Many of my other symptoms have abated BUT in

> the last couple of weeks

> the fatigue has become debilitating. My recent blood

> results are o.k., liver

> enzymes are up a bit, so my doctor thinks I should

> continue although neither

> he nor I know how much the fatigue is a side effect

> of the Rocephin, the

> disease itself or a herx. I suspect it's largely a

> side effect. He would

> like me to do another 6 weeks of it (if I can take

> it). The fatigue has been

> so bad I've considered quitting.

>

> What's your experience been?

>

> Be well all,

>

> beth

>

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October 19, 1999

,

Thanks for the encouragement.

Be well,

beth

October 20, 1999

Hi Liz,

I just started the Rocephin myself. I got my picc line in yesterday for

the second time. First time it had clogged after 3 days!!!!

October 20, 1999

Good luck w/ it . Is this the beginning of your treatment or have you

been on other abx's before. I'll be interested to hear how you do with it.

beth

> I just started the Rocephin myself. I got my picc line in yesterday

for

> the second time. First time it had clogged after 3 days!!!!

>

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

or equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 4 wks IV Rocephin, Rocephin oingoing

Live in San Francisco

February 2, 2000

Message: 1

Date: Tue, 1 Feb 2000 20:00:17 EST

From: Phishmomnj@...

Subject: Rocephin Question

Okay, this is my last email response for now.

My LLMD wants me to go on rocephin through an IV. I have tried both oral

and IM abxs for a year with little response.

Is there research to show that Rocephin given through an IV works? Have

any of you improved on this medication?

I was on Rocephin for two weeks. Would have gone longer but i kept

blowing my IV sites. Then had pic line put in but they did it wrong and

it ended up coiled in my elbow instead of in my artery. The pain was

tremendous when they put the med through and finally sent me to xray

after three days. They wanted to implant a line into my chest after that

and i told them where to go but what Rocephin i did get into my system

practically ended the heart arrythmia and a lot of my other symptoms. I

probably wouldn't be here today at all if it weren't for the IV's. I got

Lyme in 1987 but was treated for sinus infections and depression until

1992 when i forced Dr to test for Lyme. I tested highly positive on the

wb and the elisa. Unfortunately, the cdc came after my dr in 1994 and

she won't treat Lyme anymore so i treat myself as best i can.

February 2, 2000

Dear Gail,

I can't say I'm cured but I feel better after being on Rocephin IV. I was on

it for

about 4 months in 1998 after doing Primaxin for a while, and then went off to do

IV

Zithromax and oral Mepron for the Babesiosis. Now I've been back on Rocephin IV

for

about 6 months and Flagyl was added in November. I've been on IV antibiotics

since 3/98,

and I'm better than I was (palpitations certainly are better controlled, don't

have a

headache all the time, have more energy) but I am still no dynamo and don't

think I ever

will be again. I had it too long before diagnosis--6 years for the Lyme; 8 years

for the

Babesiosis. I also have Leptospirosis and I have no idea when I caught that one.

To sum

it up, take the Rocephin if you can afford it; it is better than orals. I tried

orals

for 9 months and they did nothing for me. I have an implanted port and my only

problem

is a clot on the outside of the catheter.

Good luck.

Eileen

February 2, 2000

I have a good friend who has lyme disease and her four year old daughter

has just been diagnosed with lyme, babesiosis, and erlichiosis. The

prognosis is very bad and I would appreciate any advice from this group.

Please pray for the little girl and her family.

Rigg

Re: [Lyme-aid] Re: Rocephin

From: Eileen Glaessgen <emcinerney@...>

Dear Gail,

I can't say I'm cured but I feel better after being on Rocephin IV. I

was on it for

about 4 months in 1998 after doing Primaxin for a while, and then went off

to do IV

Zithromax and oral Mepron for the Babesiosis. Now I've been back on

Rocephin IV for

about 6 months and Flagyl was added in November. I've been on IV

antibiotics since 3/98,

and I'm better than I was (palpitations certainly are better controlled,

don't have a

headache all the time, have more energy) but I am still no dynamo and don't

think I ever

will be again. I had it too long before diagnosis--6 years for the Lyme; 8

years for the

Babesiosis. I also have Leptospirosis and I have no idea when I caught that

one. To sum

it up, take the Rocephin if you can afford it; it is better than orals. I

tried orals

for 9 months and they did nothing for me. I have an implanted port and my

only problem

is a clot on the outside of the catheter.

Good luck.

Eileen

---------------------------

February 2, 2000

Just for Haha's my LD does not like to use Rocephin, he feels it causes the

LD to mutate entirely toooooo much. pepi

Rocephin Question

> Okay, this is my last email response for now.

> My LLMD wants me to go on rocephin through an IV. I have tried both oral

> and IM abxs for a year with little response.

> Is there research to show that Rocephin given through an IV works? Have

> any of you improved on this medication?

>

> I was on Rocephin for two weeks. Would have gone longer but i kept

> blowing my IV sites. Then had pic line put in but they did it wrong and

> it ended up coiled in my elbow instead of in my artery. The pain was

> tremendous when they put the med through and finally sent me to xray

> after three days. They wanted to implant a line into my chest after that

> and i told them where to go but what Rocephin i did get into my system

> practically ended the heart arrythmia and a lot of my other symptoms. I

> probably wouldn't be here today at all if it weren't for the IV's. I got

> Lyme in 1987 but was treated for sinus infections and depression until

> 1992 when i forced Dr to test for Lyme. I tested highly positive on the

> wb and the elisa. Unfortunately, the cdc came after my dr in 1994 and

> she won't treat Lyme anymore so i treat myself as best i can.

>

> ---------------------------

February 3, 2000

Hi Gail and Welcome to our list,

You sure had a terrible time with that IV line, I elected to have the

implanted catheter port and even though I had some difficulties with the

surgical procedure, I don't even know it is in now, and when I was

receiving IV infusion it was a breeze. I was on IV Rocephin for 4 weeks,

and Claforan for 2, I had 2 glorious weeks of feeling normal when the

treatment ended, but soon relapsed. Currently trying to get approval for

long term IV...not making much headway though.

Not too many Lyme literate doctors in West VA, at least that I know of

anyway. What have you been doing to treat yourself, if you don't mind my

asking.

Welcome,

Marta

> From: gail88@... (gail from WV)