Post Marketing Reports for June 2003

From: "barbclaypool" <barbclaypool@y...>
Date: Mon Jun 2, 2003 1:18 pm
Subject: Levaquin

My husband took one levaquin pill and went into shock.....he has been
diagnosed with periferal-polyneuropathy, fibromyalgia, carpaltunnel
in both wrists,he is in constant joint pain, muscular pain, skin on
body basically numb, hands and feet numb and painful. He has been
told by his Dr. he can go on disability, and soon will. His
nueurologist and personal Dr. have related this problem to the
Levaquin reaction. I cannot get an attorney to represent us against
the drug co. All attorneys I have spoken to say we cannot prove
negligence against the Dr.that gave him the medication. I have
personally filed a lawsuit against Johnson&Johnson and Ortho McNeil
on his behalf. I would like to compile statements about Levaquin
reactions from others. Please send me emails with your Levaquin
horror stories...would like your Name and address also. I will keep
in touch with info about my legal fight.

From: ward crowley <wardsown@y...>
Date: Sun Jun 8, 2003 1:43 pm
Subject: NEUROPATHY & VIBRATION FEELINGS (ELECTRIC)

It seems most postings on this site relate to
muscle/joint pain, seizures, etc. MY problem is
small-fiber neuropathy & "diffuse vibratory sensation"
as diagnosed by the Mayo Clinic. My feet seem to
"buzz" and at times my whole torso feels like it is
vibrating or electrical shocks. All of these things
come and go in time of day, areas of body & intensity
of feeling. They definitely seem to be affected by
diet. These symptoms are mentioned numerous times in
Dr. Jay Cohen's study but I have not seen them yet
here. I know they are due to the quinolones I was on
but none of my doctors (including Mayo)seem to agree.
Anyone else have these symptoms? Ward in Denver.


From: "painter173" <painter173@y...>
Date: Tue Jun 10, 2003 7:58 pm
Subject: fatigue

hi--- please forgive all lowercase letters---my kitten is asleep in
my arms.

i was given levaquin last july for 5 days for a non-existant
bladder infection. by day 2, my muscles were on fire. the pain was
intense along with horrible fatigue and cognitive impairment.

i realize now that i had mild symptoms before july, and i believe
this was due to taking levaquin and cipro previously over several
yrs for urinary tract infections. but the adr's were so mild then
that i didn't notice them. nothing like what i experienced last
july. i could barely walk for a month.

i was dx'd with fibromyalgia. docs don't believe it was caused by
the levaquin. the side effects were so bad, that i had called doc
while taking the levaquin and told him about the pain and deep
itching. he said 'keep taking it'

my muscle pain is much better. now i have all over achiness
rather than pain. and terrible pins and needles in feet , legs, and
hands. i believe magnesium and elavil have helped the pain.

My question is, do any of you suffer from terrible terrible
fatigue? what helps? also, does the weather effect you?

i fear that i will never have anything that even closely resembles
a life again. lost business. lost friends. lost hope.

thankyou----painter

From: "mb" <ea5cng@y...>
Date: Wed Jun 11, 2003 12:37 am
Subject: help reporting my ad and my story part II

Hi,
I live in Spain and I am finding it difficult to know how to report
my ADR to levoxacin. I have been trying to find information on the
web
and spanish people who have experienced the same effects. I can
assure many people here don't know about this and doctors here from
my experience DO GIVE IT OUT AS CANDY.
I took norfloxacin(don't know brand name outside spain), baycip, and
after Tavanic.
I had a urine test where I was only sensitive to levofloxacin for an
infecction by enterococcus faecalis. The nurse called me and asked me
to come round to the surgery in the NH to pick up a prescription. I
was handed a prescription BY THE NURSE in the hall which says:
TAVANIC 500mg every 12 hours and rest for 10 days and then take
again. Do this for 3 months! and your doctor's appointment is on the
13 of August! I still haven't seen the doctor(urologist) that
prescribed it, he hasn't even spoken to me, he doesn't even know I
weigh 44kg. I went to my GP who I don't know too well as I have never
been ill and she said I must take it because the infection persists
and those "difuse symptoms" that I explain have nothing to with the
medication, "just need plenty of food and rest". Finally another
doctor in hospital, who also says they have nothing to do with
TAVANIC, has changed my antibiotic to clamoxyl(amoxicilina)750mg 3
times a day but he does admit he wouldn't have given me TAVANIC for
my infection. My GP is very angry because she says that Clamoxyl
won't clear my infection and that I should be taking Levofloxacin.
So here I am with my infection(positive in new test) just the same
but with painful joints (knees, fingers and toes), ringing in my only
hearing ear, extreme weakness and lost taste, I just eat cause I know
I have to.
Can I complete the RD form myself?
if I take it to my doc she is not going to know what it is and I
don't think she speaks english.
Does anyone know where I have to report this in Spain?
I am going to try to find people in Spain with the same symptoms and
adr that don't know what is causing them and I shall send them the
information in spanish that I have found thanks to all of you.
Thanks to you all,
noynebm


From: "epistulis" <epistulis@y...>
Date: Wed Jun 11, 2003 8:56 pm
Subject: Update and question

I posted to the board this past Feb and March -- I took 10 days of
Levaquin in Feb, preceded by 3 days of Cirpo. If anyone here
remembers, I was a complete wreck. I had complete insomnia for about
30 days, horrific anxiety, muscle spasms, tremors, ringing in my
ears, eye problems, nerve pain, and muscle pain. Oh, and the
horrible bladder spasms and pain. How could I forget that.

I am glad to report that I am much, much better. I have taken what
most would consider very drastic approaches in my lifestyle. I eat a
pretty strict macrobiotic diet, with lots of grains, veggies, sea
veggies, soy products, and some fish. All organic. I took wheat
grass every morning for 2 months, to detox my liver, and also a few
herbs and some supplements. The diet thing has been a huge
challenge, but when I go off even a little, I start to feel a lot
worse. I also walk every day and do some yoga and swimming. I feel
like crap when I don't exercise. I stopped all medications,
including advil and tylenol, in Feb. I have used homeopathic
medicine to counter some of the ADR's, with some success. I took
Ignatia for anxiety, and that actually helped. Some of the others
not so much.

I still have cycles, but they have been fairly mild. The anxiety and
sleeplessness have not returned. The bladder stuff came back for
about 3 or 4 weeks, but it was bearable. I have occasional ringing,
and still have weird muscle stuff from time to time, especially in my
arms and lately in my left achilles tendon. All of the nerve pain,
tremors & eye stuff seem to have left. I still have some fatigue,
but usually feel pretty good. I am able to work full time, and
generally be a normal human again. I still have quite a bit of fear
that things will return, or that permanent damage has been done.
Everytime I feel a twinge I freak out. I am hyper sensitive about my
body. I wonder when it will end.

I applaud any and all proactive action that those here are taking to
spread awareness regarding these drugs. The level of ignorance and
denial in the medical community is astounding. My husband is meeting
with one of the top class action litigation firms in the country
tommorow (for his business) and said that he will talk to someone
about the quinolone issue.

I don't know if anyone here follows the Levaquin side effects site,
but there have been two deaths reported in the past two weeks. Does
anyone here know of any law suits being filed against Bayer? I seem
to remember an attorney visiting this site and asking for information.

Thanks again to everyone here who helped me through the initial
nightmare. I would have been lost without your support, because no
one around me knew what was going on -- and could scarcely believe
that it was from a mere antibiotic.

Good luck to everyone new here. There is hope.

Mary



From: Mindy Printz <mpk139@y...>
Date: Mon Jun 16, 2003 8:41 am
Subject: My daughter - lyme disease and levaquin

I have a 16 year old daughter who has been on IV
therapy doxycyclne 5 months for relapse of Lyme
disease (previously was on 3 years IV claferon). She
was having difficulty swallowing and intense stomach
pain when eating - bactrum was prescibed. She
developed a UTI and ws put on a 10 day course of
levaquin- urinary symptoms still occurring- another
10 days of levaquin. Had been functional but swollen.

She is now totally bedridden. Painful joints in hips
and knees. She describes as if black and blue and
cannot even roll over at night without being woken
from the pain.
Also, still unable to swallow and getting worse daily.
She is also lactose intolerant so no yogurts or milk
products allowed.
Don't know what is lyme and what is adverse effect of
levaquin.

Any suggestions? Have stopped all medication and am
very fearful of lyme relapse.
She has been seen by all the appropriate medical
sub-specialties.

Help!!!

From: aussiepsaussieps"Rick" <aussieps@y...>
Date: Tue Jun 17, 2003 7:45 pm
Subject: When will it end?

Hello Everyone.

My journey started on March 20th of this year when I was prescribed
Levaquin. 14 500mg tablets. I was in the emergency room after the
first dose suffering from symptoms of a heart attack. I've made two
subsequent repeat visits sure that I am checking out of this life.

As the first 30 days past the symptoms of heart palpitations,
tremors, pins and needles, numbness and fatigue seems to be
dissipating.

I was hopeful that most of the posts on this site were the exception
and not the rule. I'm sorry to say that's not true.

Some days are good, I feel almost normal. Only faint tingling and
others are torturous. Hour after hour of listening to my heart pound
like a miniature bass drum. Laying my head down on a pillow and
hearing it reverberate through my hears like an echo chamber. Some
twisted form of the Chinese water torture.

Waking up in a sea of sweat petrified that your next breath my be
your last. The evenings and mornings are the worst. I wake up
multiple times during the night. My left arm numb, then my leg then
my face. My heart racing to 130, 140, 160. Breath slow, Breath
slow. Calm down it tell myself. It will pass, it will pass, it will
pass.

I sleep most of the time on my back now for thats when I can hear my
heart the faintest. I pray for it to stop, it doesn't.

Then I go for maybe a day or two, no symptoms to speak of. I begin
to remember life before March 20th. Somedays I just wait for the
other shoe to drop, sometimes hoping it will.

Two years? Three years? I'm sure I can't last that long.

My neighbor and insurance adjustor asked me? "If you were healthy
and I proposed you could live through what you lived through the past
three months for a price, what would that number be?" I told him,
there weren't enough zeros in the universe for that check. My price
is to turn back the clock to March 19th and take a detour.

Sorry to drone on. I just needed to vent a little with someone that
can emphasize with my plight.

I keep looking for the light, but I'm not sure I can even find the
tunnel.

Go Night. For those like me, rest knowing I feel your pain, for
those on the mend your have my blessing and my envy.


From: "jaa0317" <jaa0317@y...>
Date: Wed Jun 18, 2003 6:22 am
Subject: New Member

This is a letter I actually wrote to Dr. Cohen who wrote the article
PERIPHERAL NEUROPATHY ASSOCIATED WITH CIPRO.
This is driving me nuts. I'm also having major panic at times. I
really feel like I'm losing my mind with all this. If it was one
thing I think it would be easier to cope with but with never knowing
what the symptom is going to be it's a enough to drive someone over
the deep end!!!!!!!!!!!
Here is the letter I wrote. I will post his response to me in another
post....

I started taking levaquin for a sinus infection on
saturday 6/7/03. By saturday nite I had pains in my legs and
arms but just thought I had over done it or something
during the day. Sunday I took my second dose and
within several hours I had severe pain in my legs,
arms, fingers, knee's etc. I felt very hot and sweaty
and actually sweated so much at one point my head was
wet. I called the doctors office and the doctor on
call felt it was not a reaction but to stop it anyway
and call my doctor on monday.Which I did call my own
doctor and she felt this was in no way related and
that it was nothing to worry about it would probably
go away in a day or so. It's now Wed. I'm still having
muscle aches and pains, incredible fatigue,
dizziness,headaches,blurry vision, pour concentration,
burning sensations in muscles of my feet and legs and
arms. I tried to discuss it with my doctor on monday
and she felt it was not related. I was relived after
doing some research to realize this is not just in my
head! I woke up this morning feeling drugged and again
many of the symptoms I described above. I also suffer
from Charcot-Marie-Tooth which is a nueromuscular
disorder so having all these sensations really scared
me. I called my doctor in tears telling her she needed
to listen something wasnt right. She had me come in
and did some pricking with a pin etc and I handed her
the article and asked her to please read this that I
belived this might be related to the levaquin. Well
she is sending me to my nuerologist i'm just waiting
for them to contact me an appt (my appt is 6/25). Has anyone had any
success in dealing with this???? Is this something
short term or long term in your experience. Also if
you have any information I could pass along to both
the dr and nuerologist to help I would appreciate it.
Because at the moment I feel like my doctor thinks
this is all in my head. This is so frustrating but I
know something just is not right!
Thank you for your help
Julie Anderson


One question I have is after reading this forum I notice people
talking about eating meats and having problems. Can someone explain
to me what that is about or point me to past posts on it so I can
read up on it. I dont want to make my symptoms worse. I've only been
dealing with this a week and I just want to curl up in a ball and cry.
Thanks for any help.
Julie


From: "quackvictim" <quackvictim@y...>
Date: Sat Jun 21, 2003 7:45 am
Subject: To cipro or not to cipro?

Hi everyone. I found this site last night and I'm so sorry you're
all going through such terrible problems. I've been offered Cipro by
my doctor to treat a longstanding problem that was caused by
anitbiotics in the first place and I'm honestly not sure what to do.
Could any of you offer any insights or thoughts - I'd be really
grateful.

Three years ago I was prescribed a 10 day joint course of Augmentin
Duo Forte and Doxy 100 for a suspected UTI. Note "suspected". All
the tests subsequently proved to have been negative (i.e. no
infection of any kind) so why I was given these a-bs I'm still trying
to find out. I started to suffer really severe gastrointestinal
problems after the first dose - severe diarrhoea, abdominal cramps
and distention, etc. I contacted the doctor who told me to continue
the course despite the symptoms. After four days of worsening
symptoms and diarrhoea like dysentery I managed to get to see her.
She still told me to continue but I stopped them myself that night.
That was three years ago and I was diagnosed at the time with severe
dysbiosis (a massive disruption of normal gut flora) but despite a
massive amount of naturopathic treatment and tons of probiotics (not
to mention a huge financial burden) my bowel has not returned to
normal at all. I had Great Smokies run a digestive stool analysis
and they discovered I had higher amounts (listed as 4+ Possible
Pathogen, whatever that means) of Klebsiella oxytoca, proteus
vulgaris and Hafnia Alvei. All these three bacteria are capable of
causing diarrhoea and gastrointestinal distress, apparantly, which is
what I'm basically still suffering from. The sensitivity testing
showed Ciprofloxacin to be the only antibiotic effective against all
three. No herbal remedies were effective on the sensitivity tests.
My good flora were shown to be high in the Lactobacilli but very low
in the Bifido bacteria. It looks possible that my continuing
symptoms are being caused by the higher than normal levels of the
three possible pathogens and if I could get rid of them, maybe I'd
get back to normal and could start rebuilding my health again
(although I can hardly remember what "normal" was like any more).

So what on earth do I do? The doctor has given me a prescription for
Cipro 250mg twice per day for 7 - 10 days, depending on how quickly
(or if) my symptoms improve. These last three years have been a
nightmare and I'm suffering from malabsorption and various other
problems directly related to these gut problems caused by these
dreadful antibiotics. Is Cipro as bad as the other quinolones? Do
you think I'm likely to suffer any reaction to such a low dosage?

My apologies that this is so long - if anyone could offer me some
insight or information I'd so grateful - I'm so desperate to be well
again and get my life back.

Thank you in anticipation of someone replying - I truly wish for
improvement for all of you still suffering and a return to good
health.

veronica


From: "jaa0317" <jaa0317@y...>
Date: Mon Jun 23, 2003 5:10 am
Subject: Muscle pains... and aches

Ok i'm coming to the experts since I'm new dealing with this.
I know I read someone had a deep tissue massage and had problems so I
thought I would ask... Has anyone used ben gay or icy hot or anything
like that with the muscle pains? Has it helped or hurt.
Right now I seem to have pain in the shoulders and last nite thought
of using the icy hot but choose not to. How about applying heat does
that help or make matters worse?

Julie



From: erineena2003erineena2003"erineena2003" <erin_spinazzola@h...>
Date: Thu Jun 26, 2003 7:51 am
Subject: levaquin+shooting pains

I am a 33 yr old female. I took Levaquin 2 yrs ago for a sinus
infection. About a month after I finished the med I started getting
shooting pains (nerve pain) throughout my arms, legs, hips, ankles,
feet, wrists, fingers. I realized after 3 moths that it was the
levaquin. I went to Neurolgist and Rhuemtologist they found nothing.
(and disagreed that levequin was the cause). It went away completely
after 10 months. I was symptom free for 1 year. WEll guess
what....it's back. Its been about 5 days now of that same shooting
pain throught almost every single part of my body. Does anyone know
if the side affects are perminant? and even more importantly, does
anyone know if it can cause future diseases? I'm scared at this
point.
Anyone have similiar side effects?


From: garyp0323garyp0323Gary Pettijohn <garyp0323@y...>
Date: Fri Jun 27, 2003 10:14 am
Subject: Re: [quinolones] Re: is the drug worth the risk?

As a new member of the forum and I speak on behalf of
my 23 year old daughter who unfortunately lost her
life from ADR to Avelox, I agree with the
recommendation to never take a quinolone. Everyone in
our family is getting this message out also. My life
now is dedicated, on behalf of my daughter, to
preventing people being used as test subjects after
drugs of this type have already been approved for use
by the FDA.

From: donswife1991donswife1991"donswife1991" <donswife1991@y...>
Date: Sun Jun 29, 2003 11:17 am
Subject: Chest pain


Hi,
I found this website while hunting for information about Cipro side
effects. I already knew they were really bad. I even sent emails
to Barbara Walters (via "The View") and Oprah asking them to educate
people about taking this drug like candy during the anthrax scare.
My husband was prescribed Cipro a few weeks ago for a nasty burn on
his ankle that he received at work. While I had reservations about
his taking a drug as potent as Cipro, I also didn't want him to lose
his foot. He's been off the drug for a few weeks now but is
complaining about pain and tightness in his chest. He says it gets
worse when climbing stairs, etc. My question is, can this be a side
effect of the Cipro? And if so, will it go away on it's own or
should he see a cardiologist?


From: flwrlady2002flwrlady2002"flwrlady2002" <flwrlady2002@y...>
Date: Sun Jun 29, 2003 12:31 pm
Subject: Photosensitivity Reactions?

Is anyone on the forum experiencing skin problems such as
photosensitivity, skin just not feeling right or looking right,
peeling of skin? I ask because twice since Memorial Day my face
swelled up - eyes (above and below), lips, and whole face was red as
if I'd been in the sun for hours. On each occasion I visited a
local plant place, had sunscreen on and was not in the sun very
long. I would have the reaction by the next morning and worse by
the following day. I ended up going to the ER the 1st time and was
told it was probably a reaction to pollen - was given Zyrtec at the
ER and a script for 20 more. I also went to an allergist the very
next day and he said it was probably from pollen or could have been
from something at the plant place; i.e., what they spray on the
plants, etc. I said I wasn't quite sure it was from the sunscreen
as I have used sunscreen before with no problems. A few weeks later
the same thing happened. Saw allergist again (had run some allergy
tests in the meantime - only found allergy to dust mite, dog,
Timothy grass. He really wasn't sure what it could be, but now
thought it wasn't from the plant place. Oh, I was given Prednisone
both times to use for 3-5 days until it cleared up. I was very
reluctant to use it because of it being a steroid, but was told that
was for longterm use you need to be careful. I had told ER dr. and
allergist about my reactions to Tequin last year. Allergist said it
wasn't from the Tequin (I knew he'd say that). The reaction went
away within 3 days the first time, but this second time has given me
a worsening of whatever is happening. I used the Prednisone and saw
a Dermatologist also who gave me some Cutivate to use on my face
after the Prednisone and if it happens again - she said after using
the Prednisone you can have a relapse which is why I should use the
cream. It's been over a week now - used Prednisone for 3-5 days (oh
yes, everytime I did use the Prednisone my shoulders, arms and
entire torso felt as if the skin was bruised - sort of under the
skin or as if it was sunburned under the skin) and would go away
once I stopped. I have used the Cutivate for a few days and it
started to make my face peel. The Derm said that it was good
because it's clearing up the scaling which occurred from the
reaction.

I don't know what to do anymore - I'm afraid to even go outside in
the sun now because I think it's coming from the sun - and it's
soooooo beautiful outside today too. I also seemed to be getting
somewhat better a few months ago - not perfect - but I could
tolerate things better and seemed to have to not so bad days. Now
all of my days are bad or worse. I'm still on Ativan for about
close to a year now - never take more than 2/day mostly only 1 @
1mg., but it doesn't seem to help so much anymore. I'm afraid to
take more than 2 a day and can't seem to get off of them. I'm
afraid if I do that everything will get back to how I felt when this
all first started happening.

David Fuller - didn't you say once that you were having somekind of
a reaction on your skin like red welts or spots? Did you ever
figure out what it was? If it wasn't you - sorry I asked.

The Dermatologist also suggested that I go to a Rheumatologist
because they are more schooled in autoimmune diseases and can tests
for more than an allergist can - allergist did test for that and
Lupus, but once again everything is normal. The Derm said I might
want to tested for connective tissue diseases also. She said that
if I had the reaction on my face again she could do somekind of
patch testing.

I've also noticed the past few weeks that my throat seems to be
getting hoarsey sounding at times - I thought this was from the
pollen at the time to, but not sure anymore. I have dental work
that needs to be done the next two days and I don't know if
something is wrong with my throat and I should cancel the appts.
until I find out or what. I seem to be going downhill again when I
sort of thought I was getting a little better. The anxiety has
never gone away and was very bad last night and this morning - I
don't know why.

I'm going to make an appt. with a Rheumatologist tomorrow and see
what she has to say (although I already can guess). A person does
not feel sick or sickly for a year with nothing being wrong with
them - that's according to these drs. and all the tests that have
been done.

I agree that it is getting harder and harder to deal with this
stuff - I pray to God everyday that he sends us someone who will
finally be able to get this stuff out in the open or find us some
kind of cure or something. I can't believe the rest of my life is
left to this because of a simple sinus infection. I know this is
long, but I have to ask the members because I do not know of anyone
else around that is going through this - although I suspect there is
and people just don't realize what has happened to them.

Thanks for listening and any comments are welcome - good health for
everyone of us!