Post Marketing Reports for December 2003
 

From: sweet1956pea@a...
Date: Tue Dec 9, 2003 9:35 am
Subject: more eye problems, etc
Just read a posting about all sort of eye ailments. i have the shimmering,
thinking i need to wipe my eyes~ like they are tearing up, but no excess tears.

my eyes have been red constantly since May of this year. I thought, and dr.
said was due to "allergies". Eyes became chemically sensitive (to make-up,
that means). Never had that before.

Have also been getting those big hemorrhages around the iris. Have had 3
since June. (Never had one before). Dr. said it was because of 'excess tissue'
forming on either side of the iris. The tissue is friable (meaning bleeds
easily - yes, I know!), and the problem will only get worse. Of course surgery
is
the option. Of course, it is because of my age. I am thinking not!

Also had the occular "lightening flashes" in May ~ I thought I was having a
stroke or something. That was when I was admitted to the hospital for vertigo
(again, never had before).

OH, one other major thing. For the last 2-3 years I have had excessively
excessive sweating. Others are freezing and I am sweating. Of course, you
know,
(I was told), it is that time of life for you. Odd thing was, I'd had total
hysterectomy already, and had no problem. When the sweating developed, years
later, was put on hormones. The sweating did not go away.

Things get curiouser and curiouser.

I am trying to find someone in my area (midWest) who will help find a
solution.

Good luck, y'all.

Have a great day.

Patti

From: "headsparks2000" <cholcombe@c...>
Date: Tue Dec 9, 2003 10:51 am
Subject: Re: Floaters, Swollen Glands, Insomnia...

Is there anyone out there still suffering from the swollen glands &
burning tongue...if not...how long did it take before they went
away...it's only been 5 days for me...but starting to worry me & from
what I've read..there's not much you can do about it.

Thanks again,
chris



From: "Karl, Karl Byrand, Byrand" <gneissdog@y...>
Date: Tue Dec 9, 2003 11:33 am
Subject: Re: [quinolones] Time for tendon damage

I had pain within the first seven days of taking levaquin. That was a year ago,
and I continue to have pain today.


From: "Debra Morse" <debm@c...>
Date: Tue Dec 9, 2003 11:33 am
Subject: Re: [quinolones] Re: Floaters, Swollen Glands, Insomnia...

Hi,

I've seen several postings from people who had the awful metallic taste but
you are the first one I've seen who also suffered the burning tongue sensation
like I did! I had both of them. The burning sensation went away within a week
of finishing the Levaquin but the metallic taste lingered for a little over
5 months and only went away after I started taking magnesium.

Wildreader2000


From: "Susan Harvey" <susanh@w...>
Date: Tue Dec 9, 2003 11:52 am
Subject: RE: [quinolones] more eye problems, etc

Dear All

I was floxed in 1991 by Cipro. Had no idea it was the drug causing all my
horrible symptoms until the last year or so when I began having symptoms of
swelling and pain in soft tissue around my tailbone and ankles. In doing
research on the web, I believe a lot of the problem for me was fluoride in
my drinking water (and everything else). Once I got a reverse osmosis water
system at home the swelling and pain subsided within two days. Now, let me
back up a little. The Cipro in 1991 began a horrible journey and I thought
I was losing my mind and coming down with some dreaded disease. I can’t
remember when the worst of the symptoms went away, but I can tell you it was
months. What stayed with me was the pain in my hips. I thought I was
getting arthritis. Then two years ago I was given occuflox for an eye
infection and things got bad again. The pain in my hip joints was the
worst. That’s when I got floaters in my eyes. I don’t remember how long I
used the eye drops, but I didn’t like the taste it left in my mouth so I
stopped taking it early on. The floaters have come and gone over time.


From: "Emajoe Abeln" <eabeln@e...>
Date: Tue Dec 9, 2003 3:07 pm
Subject: Neuropathy from cipro/levaquin

I don't think my first post went through. I've been
reading the messages since August. First time to post.
I was given cipro for diverticulitis in November of
2001 Soon after started having pain in my left ankle
then after awhile went to my low back then all of the
way on my left side. Muscle pain, joint pain dizziness.
I had a full neurological work up in November of 2002.
They found nothing was sent home saying nothing was
wrong. Then after awhil things started getting better
I was still limping abit. Then in January of 2003 I
got diverticulitis again and was given tequin and that
didn't work was given levaquin, was put in the hospital
and had levaquin IV, I immediatly started having pain
in my arm. Which they thought was the IV so it was put
in the other arm and the same thing happened. But I
was too sick with the infection and wanted to get
better I was then sent home and given levaquin again it
was for a total of 6 weeks. I was gettint worse. My
Dr said the infection was gone and thought I needed
counseling. I then went back to the neurologist and
was given neurotin which has been helping some. There
are days in which I'm really good and then again the
bad ones come. I was also given a steroid injection
for my migrianes. Which I now think makes me worse.
Sorry for the long message but this has gone on for 2 years.
I've almost made to the one year point. I am now
seeing an internest for everything even for
preventative care for the diverticulitis. I still have
some left arm pain and tremors too. I'm wondering if
anyone else has had a similar experience with this and
if there is any hope. I feel like I'm going to be this
way for the rest of my life and that if I go off of the
neurontin everything will be like it was when it
started. I also have a lot of muscle pain, cramps, and
charlie horse pain.


From: Lucinda Lang <storage870000@y...>
Date: Tue Dec 9, 2003 4:23 pm
Subject: Cipro

Nine years ago I had a severe kidney infection. The doctor treated me with
cipro. The first day of taking cipr I lost control of my movements. My knees
buckled and I fell to the floor. I could feel a rocking back a forth sensation
centered in my back, later called a motion tremor disorder. When I lay in a
lazy boy chair, asleep, I rock the chair back and forth!!!!!!!
After falling to the floor, my mom called doctor. His answer of course was no
it can't be cipro and keep taking it. My mom took me to the E.R., no help. The
muscle sensation continued. I was taken to a neurologist who said it was not
the medication, but with all the testing decided I had a motion tremor disorder
and gave me Klonopin.
Here I am 9 years later still with the motion tremor and an increase in Klonopin
because the tremor has become resistant to it. I have been from doctor to
doctor with all kinds of diagnoses and so far herbs and shiatsu massages have
managed my tremor and many other health problems since cipro. I want to share
the other health problems, but I would like to know if anyone has had what I
have described , tremor?


From: "build_it95" <build_it95@y...>
Date: Tue Dec 9, 2003 7:28 pm
Subject: Levaquin ADR doctors?

Does anyone know of any Doctor in the Southern New England area who
has dealt with these ADR's?? Or even the entire Northeast?
Symptoms ongoing for four months(September 2003) including
neuropathic pain, tendon damage, vision problems, anxiety, severe
fatigue, decreased motor skills and cognative function. All symptoms
began after being prescribed Levaquin for chronic
bronchitis/pneumonia.Biaxin was prescribed first but had no luck.
While on Levaquin I was injected with steroid at ER, also given
Albuterol breathing treatment. Sent home with Rx for Prednisone,
Albuterol, and Motrin 800mg, which I took all as prescribed (all at
the same time) while I finished out my Levaquin scrip for 7 days.
Just a note I had 7 day course of Cipro back in January 2003 for same
bronchitis/pneumonia. In hindsight I realize I may have been having
mild ADR to Cipro and didn't know it (slight electric shock/vibration
feeling in my right hip).


From: "Randy & Mary Roethler" <fish@i...>
Date: Wed Dec 10, 2003 9:32 am
Subject: Re: [quinolones] Re: Floaters, Swollen Glands, Insomnia...

My floaters and flashes started one month after being floxed. At the time they
started I had just gotten out of the hospital after a 6 day stay where the
doctors were trying to figure out why I was having spells (rapid heart rates,
lightheadedness, dizzy spells, heavy feeling in my chest, pain in my left
shoulder and upper left arm, weakness and muscle pain). The day I went to the
emergency room I could barely walk from these spells. The doctors could find
nothing wrong with my heart or me and sent me home still suffering with these
spells. While I was in the hospital I had spell after spell after spell. The
first day I had at least 20. I was put on a low fat and low salt diet while I
was in the hospital because the doctors thought there was something wrong with
my heart. Guess what I ate at least one meal a day? Chicken!!!! Isn't that
interesting. I had more "spells" in the hospital than I did at home.

The floaters and flashes started then and haven't gone away yet and it has been
9 months. I believe they were caused by the Levaquin. I also believe my having
a swollen lacrimal gland which I had to have a biopsy done on and found out it
was just swollen was also a product of the poision called Levaquin. Don't you
find it odd that so many people who have been floxed have the flashes and
floaters. How much of this could be a coinsidence.
Mary

P.S. I have been to the eye doctor several times and my vision is excellent,
but when I tell them about the flashes and floaters they blame it on age. That
this happens as we grow older and most people don't even notice them. Yeah
right!! I was 38 at the time. And they also told me they would go away by
themselves.

From: "headsparks2000" <cholcombe@c...>
Date: Thu Dec 11, 2003 7:49 am
Subject: gland pain moving around
Hey there, hate to keep harping on the subject. But I've been
experiencing gland pain for about a week now. It all started with a
severe ringing in my left ear last Monday, which went away in a few
hours...then next morning I had a bad metallic taste in my
mouth..which turned to a slight burning feeling...after four days my
glands in my neck stared to swell, then moved to my armpits, then to
my groin for a day, then back to my neck where it seems to have
settled for a few days. It generally hurts on the back right hand
side during the day & moves to the right side/front of my neck later
on in the day. Has anyone else experienced this movement of the
pain...it's not severe...more like I pulled a muscle. By the way,
it's been 6 weeks since I quit the Levaquin.

Chris

From: Lucinda Lang <storage870000@y...>
Date: Fri Dec 12, 2003 2:22 pm
Subject: The rest of my story

I found this group on the 9th and told everyone I had motion tremors for 9 years
since taking cipro. I have taken Klonopin prescribed by a neurologist for the
tremor. Did OK for a little while. Then the doc. added anti-depressants with the
klonopin for my mental state stunk. It helped. Then the hip pain came along with
pain in my groin, legs, and feet. Then I developed a vibrating sensation that
ran down my legs to my feet with a tingling sensation in my feet. Also, the same
sensations ran down my arms to my hands. I found a herbologist who started me on
a regimen of herbs, vitamins, blood purifiers. He is using reflexology by
placing magnets on my body, and I go once a week to him for shiatsu massage,
kind of like accupressure. I forgot to mention that I was losing my balance. I'm
doing so much better physically and mentally. Thank you all for being here and
sharing your stories and thank you for letting me share mine.



From: "Rick Tyler" <rhtyler@y...>
Date: Sat Dec 13, 2003 9:45 am
Subject: Re: Quinolone ADRs


I was FQed in June, 1999. Except for lingering rotator cuff
tendinitis, I consider myself recovered. It took about nine months,
though, and during that time things got worse and better in a sort
of random pattern.

I took 3 Levaquin and 1 Cipro. Against my advice, my father took
Cipro for a week and now he is showing all the peripheral
neurological problems on the list. I hope he gets better, too.

- Rick

From: "David Nixon" <davenitup@h...>
Date: Sat Dec 13, 2003 8:27 pm
Subject: Baaaddd reaction to Avelox

I've never had a bad reaction to medicine before and wasn't sure what
was happening to me. Thank goodness for the Internet. My ordeal
started 5 days ago on a Monday. I left work early feeling really
rundown with chills and aches. I stopped by my doctor and a swab test
confirmed I had the flu and an xray confirmed I was starting to
develop pneumonia. I recieved an antibiotic shot (sounded something
like rociferen) and a breathing treatment (albuterol) and was
prescribed some flu pills (rimantadine) that I was to take each
morning and night for 5 days. I fell asleep immediately when I got
home and stayed in bed until my doctor appointment the next day about
2:30. The chills and muscle aches had disappeared. The cough was
still there, but I felt much better. At the doctor, I received
another IV of the same antibiotic and another breathing treatment. On
Wednesday I went to work for about 4 hours and then went to the
doctor on the way home. I was really feeling good and my lungs had
almost cleared. I was prescribed Avelox and took my first pill that
night about 7, along with my flu pill and a breathing treatment. The
night was terrible. My heart palpitated. I couldn't regulate my body
temp. I kept uncovering and covering myself. I watched the hours
click by and would only sleep in small restless spells from which I
would be awoken by terrible nightmares. I began to feel very anxious.
I felt exhausted when I finally got up. I wrote it off to being
worried about my wife and son who also had the flu and all the
stories about kids with the flu dying. I went to work and did ok, but
I remember looking at my computer thinking that my vision was really
deteriorating and that I might need to start wearing glasses. I also
had what felt like a panic attack. Everything closed in like I was
looking through a peep hole. I immediately got up from my desk and
went for a walk down the hall and felt better. I just didn't feel
right, but figured it might be my pneumonia causing me not to be
getting all the oxygen I required. That night I took another dose of
Avelox and another flu pill, but skipped the breathing treatment
thinking it was the culprit. I had another terrible night. I remember
thinking that I knew I was stressed and worried, but couldn't
understand why I was feeling so hopeless and panicked. On Friday, I
decided not to go into work because the thought of going in made me
very anxious. In the morning I skipped my flu pill thinking it was
the culprit. I decided to schedule a doctor appointment for that
afternoon to tell my doctor that I didn't feel right and that I
thought it might be the flu pills. About an hour before my
appointment I started thinking that I was taking the flu pills on
Monday and Tuesday and felt fine. Then I remembered that I started
the Avelox on Wednesday and looked for the pharmacy note with the
list of side-effects, but couldn't find it, so I did a search on the
Internet and Wow! Everything I was feeling was right there. I felt so
much better. I told my doctor and he said that he had some patients
who had similar complaints. Of course the only thing he told me prior
to prescribing it was that it gave some people some sleeping trouble -
I'll say. He gave me another shot of antibiotic and prescribed three
more days of Zithromax pills. He told me the Avelox had a 16 hour
half life so that I would probably be able to sleep. That evening I
felt good about 75% of the time, but there would be periods where I
would still feel down. My sleep was not fully restful, but much
better. It is now Saturday night and I feel like everything has
passed. Thank goodness. I feel like I got a glimpse into the
hopelessness and anxiety that people with depression feel all the
time and it was terrible. I felt compelled to write my story in hopes
that it might help someone else.


From: "ajarn_bill" <ajarn_bill@y...>
Date: Mon Dec 15, 2003 4:12 am
Subject: Beginning of the end?

I finally convinced my doctor about the dangerous side effects of
Norfloxacin. At first he was very skeptical about the information I
had
given him. He did advise me on the last visit to him to make certain
I
write in both my passport and DL that I am prone to have severe
reactions to quidolones. No more for me.

I did ask what I can do to help ease the symptoms outside of his Rx.
He
did refer me to a traditional Thai foot masseuse (sp), coupled with B
vitamins, jasmine tea and a few other herbs (I'm not sure what they
are
since they are written in Thai). The foot massage hurt a lot at
first.
However, after 1 1/2 hours, I did get feeling back in my legs and
feet.
The following day (Sunday) was amazing! I could actually walk without
discomfort or pain! Monday, I returned to work and was able to teach
for 6 periods without needing to sit once. No pain at all.

As I write this, only once did I feel a small spasm in my left heel,
nothing
major. It was gone in a matter of ten seconds. I'll be returning for
another foot massage tomorrow. It may not work for everyone, but it
seems to be working fine for me. I can only hope this is the
beginning of
the end. Whatever it takes.

I hope all of you on this forum will continue to heal and be healthy
once
again.

Bill

From: "virgotw95" <virgotw95@y...>
Date: Mon Dec 15, 2003 3:59 pm
Subject: Newbie/Insomnia for life????

Hi,
I was given cipro a few months ago and have recently started
experiencing trouble sleeping. The only symptoms I had at the
beginning were dizziness and confusion. Now, it is very hard for me
to fall asleep and I have never had trouble sleeping. I am only 21
yrs old. I took cipro for only one week. Has anyone else
experienced trouble sleeping? Mainly, has this improved over time,
and what should i do to help me fall asleep. I really really need
your help guys. Thanks so much.

From: "Laurie" <laurie@p...>
Date: Mon Dec 15, 2003 11:49 pm
Subject: RE: [quinolones] Newbie/Insomnia for life????

I had trouble sleeping while on the quinolones (Levaquin, in my case),
but <knock wood> that seems to have gone away with my stopping the drug.
My sore, stiff knees, elbows, and right Achilles tendon continue to
cause me pain. I've had some brief bouts of dizziness, but nothing
horrible. If I'm left with some minor stiffness and the odd bout of
vertigo, I'll be happy. Right now, I'm afraid I could be walking like a
90-year old woman for the rest of my life, and that scares me. I cling
to the reports of people getting better within weeks or months and
having no significant recurrences, though these appear to be in the
minority, at least among those participating in the forums. Of course,
people who get better quickly might not be motivated to participate, so
they may not really be represented here. Giant rationalization?

L.

From: sweet1956pea@a...
Date: Thu Dec 18, 2003 5:15 am
Subject: any of these symptoms, anyone?

Hello ~ I am not sure who all this will get to, but....

I am really curious to know if anyone else has had vertigo, hair loss, mixed
hot and cold feeling at the same time, arms/hands/legs/feet "falling asleep"...

Thanks.

From: "Laurie" <laurie@p...>
Date: Wed Dec 17, 2003 10:43 pm
Subject: RE: [quinolones] new - floxed with cipro

That's awful, that despite your making the choice not to take it that
someone took advantage of your situation and bullied you into it. I,
too, was in pain and scared of complications from my condition
(diverticulitis, diagnosed in the ER) and took what they gave me. 7 days
later, I couldn't bend my left elbow or straighten that arm out, could
hardly walk from stiff knees, and my right Achilles tendon burns and
aches virtually all the time. Most of my neurological stuff stopped when
I stopped the drug -- the insomnia, the anxiety, the detached, confused
feelings. Of course I've heard things can surface or resurface later,
but I'm hoping "all" I'm stuck with is the stiff knees and sore Achilles
tendon. My arms are better than they were, and it's been just 8 days
since I took my last Levaquin.

I hope you feel better soon, as I hope for all of us.

Laurie


From: "megansmom10" <megansmom10@y...>
Date: Sat Dec 20, 2003 8:31 am
Subject: My Avelox Nightmare Story

I have been reading this Forum since February of this year. I
finally decided I should tell my story to give hope to some of you.

Feb of 2003 I took Avelox for a sinus infection. I took 1 pill and
felt funny, thought nothing of it becasue after all it was just an
antibiotic. I took the 2nd pill and that was it, my life had
changed, it was 7 months of a complete life change.

I woke up that night with a horriable sensation through my whole
body, I could tell my whole central nervous system had been
overstimulated. I couldnt sleep, I couldnt sit still, I keep rocking
back and forth, it was awful! I went to the medical clinic and the
doctor told me I was having a reaction to the Avelox but it should
go away when it leaves my bloodstream. WRONG! Thinking he was right,
I waited it out till I could not take it anymore, went to a
differant doctor, by this time I was an emotional mess. That doctor
started me on Paxil and some Xananx. This doctor had no clue, I
think he just thought I was mental. After a few more days I tried to
get into a psyciatry office and it was a 6 week wait. I couldnt do
that, I was going crazy with how I felt so I checked into a mental
health clinc so I could been seen right away by a psychiatrist.
And that I was. This man was wonderful, he researched Avelox, he
told me beyond a dought it was this drug making me feel this way and
he would never let his family take it!! He put me on Klonapin and
left me on Paxil, the Klonapin did help right away, for the first
time in a week my body calmed down. But I researched Paxil and
Klonapin and thought, "oh no, Klonapin is addictive and Paxil is one
of the hardest Antidepressants to get off". So I took myself off the
2 medications. All the syptoms came back, I couldnt sleep for a
month after that, depression set in really bad which I had never
suffered from in my life and so on.... Back on Konapin I went and
back on a differant anitdeprssant. Well, lucky me, Celexa made me
even more depressed and I ended up in a Mental Health Hospital, I
could not beleive all this was happening to me from a stupid
antibiotic! I felt dead inside, I still had the rocking back and
forth thing going on, my adrenaline was always on high alert. I had
to take a leave of absence from my job, I have 2 small children that
I couldnt even take care of, it was the worst time I had ever had in
my life. My life seemed over as far as I was concerned. I just
couldnt beleive this was happening. And my poor husband who is a
pharmacuetical rep felt horriable as he was the one who brought home
the free samples for us. We did file an FDA report.

Basically at this point my whole central nervous system had broken
down, it went from severe anxiety which in turn leads to depression.
This drug just zapped my GABA receptor in my brain and I was floxed.
I spent 7 months working with my psyciatrist and just trying to keep
me stable, I also at one point had to include a mood stablizer
called Trileptal which was fine. I think he was trying anything.

Well, to end this story, during this whole process I also worked
with a functional medicine doctor in CA. I followed a book called,
The Principle, transition 2 by Diane Swartbein. She promised me I
would get better and she was right. She has a website.What could
have taken 2 years to reheal my nervous system we did in 6 months. I
ate perfect, no sugar, no refined flour, all I drank was water, I
took all my supplements in theraputic doses to heal the brain and my
nervous system, everything I bought was organic as possiable and
ect.... My husband made it possiable that I had hardly any stress in
my life except what I was going thru. I slowly started having good
weeks and then it just got better from there. My life is completely
back to normal and I am back to my happy old self. It seems like a
bad dream and now I cant beleive it ever happened.

If is helps anyone, dont give up and dont feel bad you are depressed
or now have anxiety, you are not crazy, it is becasue of the drug
and it can end. Remember I was suicidal and just a mess for 7 months
and now I am completely well! But you are going to have to have a
healthy body to work with so dont just rely on the meds, work with
both. Best wishes to you all. Jodi

From: "Michael Remington" <remingtons150@m...>
Date: Sat Dec 20, 2003 9:57 am
Subject: Corticosteroids/Levaquin

I was taking a Corticosteroid ADVAIR inhaler for a sinus problem. I was
prescribed Levaquin for the same problem. After taking one Levaquin both feet
and ankles swelled up and I was unable to walk or put any weight on my feet for
four days.
I'm still fighting the Doctors about this being a drug reaction. One ER visit,
three appointments and some X-rays. I had several blood tests, and one came
back positive for Rheumatoid arthritis.
My ankle joints and tendons are still tender and my toes have a tingle burning
sensation. I took the medication on the 5th of December.
I have contacted Ortho Mcneil at 1-800-682-6532 and their on call help
requires my doctor to call them for detailed medical information. They did think
it was possible I had a drug reaction!
The Ortho Mcneil Levaquin information site has lots of information for doctors
and patients.
Has anyone had any luck getting a doctor to call Ortho Mceil and does the
company have any tests or remedies for the side effects?

Mike
Widefield



Has anyone had a similar experience and what does it take for a doctor to make
A phone call?

From: "Paul" <ao010@y...>
Date: Sat Dec 20, 2003 12:44 pm
Subject: new and worsening symptoms...

8 months and counting post 1 dose levaq... symptoms keep changing and
it seems to be going deeper in my system... from tendonitis to
abdominal and spinal pain... not maybe floaters showing up - wonder
what else I have to look forward too.. and I have a gut feeling it
will all pass but boy - could fool my mind about it...

Paul

From: "annthomas2020" <j.thomas39@c...>
Date: Sat Dec 20, 2003 11:29 pm
Subject: tendonitis in the upper arm...anybody else?

After taking 5 doses of Levaquin, I stopped the 10-day prescription
due to various reactions...sore eyes and double, blurred vision,
pyschological problems (fogginess and feeling as if I were moving
underwater along with "out-of-control" feelings---wanting to drive
the the car into the ditch and not understanding why I would want to
do such a thing!), terribly hot all over my body, not like fever but
like fire, etc. Within a day or two of stopping, I noticed a dull
ache in my upper arm between the shoulder and the elbow. A few days
after putting up with the dull ache, I started having very severe
stabs of pain. The doctor says it is severe tendonitis and has me on
Naprosyn for pain and a round of prednizone. He laughs when I say it
has to be from the Levaquin and suggests that of course, I must have
pulled the muscle...don't I recall doing that? (I did NOT pull the
muscle or do anything to injure it) I notice that many of you
mention tendon pain...but has anyone had this pain in the arm???
(not the shoulder or the elbow...just in between) Also, I wonder if
anyone had this reaction. The very next day after starting the
Levaquin, when I coughed (which was nonstop), the tendon in the side
of my neck felt as if it were rupturing. Horrible pain...but now it
seems o.k. You all will smile (or cry) when I tell you that my
doctor said...I swear to gosh he said exactly this..."trust me, I am
the man in the white coat"!

From: "rionews" <rionews@y...>
Date: Sun Dec 21, 2003 9:04 am
Subject: Cipro or MS?

Hi. I have posted here before but for a number of months I had
sort of kept a quinolone ADR on the theoretical backburner
because it was looking like I might have MS. I wanted to rule out
a serious disease before entertaining the possibility that my
health problems stemmed from a bad reaction to Cipro.

I've now had two sensitive MRIs, seven months apart, with and
without contrast, of my brain and cervical spine. They are normal,
showing no lesions. I've also had visual evoked potentials and
somatosensory evoked potentials. The only MS test I haven't had
yet is a spinal tap, and I'm scheduled for one in a few weeks.
The doctors are saying that MS is beginning to look decidedly
unlikely, which is good. But it leaves me to wonder, what
happened to my body?

Here's a sum-up of my experience, and I would appreciate it if
others would comment on whether my experience has anything
in common with therir own experiences of quinolone ADR. I've
had just about every lab test in the book, and nothing remiss has
been found so far.

December of 2002 I got a bad viral infection. It was
misdiagnosed as a bacterial infection and I was put on Cipro
750 mg twice a day for 10 days. It wasn't fun, but the infection
eventually subsided and I wasn't left with any major side effects,
except that I started to get some muscle twitches here and there.
In February I started to have problems with urination, retaining
fluid and also having to go to the bathroom more often. I went
through a work-up that eventually included a urologist, who after
lots of tests diagnoses me with prostatitis, likely due to my
original infection a few months before. He put me on Cipro 500
mg, twice a day, for six weeks. The ''infection'' didn't clear up and
the Cipro was a little harder to handle. It was giving me major
insomnia and lots of anxiety. Then around day 10, I started to get
numbnesses in my left leg. They would last for several hours or
on occasion a day or so. They weren't enough to effect my gate. I
then started to get numbnesses all over the place, like my hands
and feet would ''fall asleep'' at night, as if the circulation had
been cut off. I got muscle jerks and more muscle twitches. I got a
pressure senation in my ears and head, and ringing in my ears.
Sometimes it felt as if I was losing some hearing.

Around week 4 of Cipro I started to get bowel trouble adding to
my urinary troubles. I'd get narrowed stool and just generally a
very irritable bowel. I got a major case of pruritis in that area, too.
It was so troublesome that walking any distance would be hard
because of the itch.

As soon as I stopped Cipro (my urinary problems were ongoing,
although they'd improved somewhat) the real problems began.
First it was an electric shock sensation in my abdomen when I
would bend my neck forward. I think this is called L'hermitte's
sign and it's very common in MS. I haven't heard it described in
quinolone ADRS before. This lasted about two weeks. I got
numbnesses in my face and trunk which would come and go
over hours or days. I got little electrical sensations and stabbing
pains throughout my body. Then I got numbness in the outer
fingers of both hands, lasting for a number of days. At the same
time, vision problems kicked in. I got floaters and blurry little
cobwebs passing through my field of vision, in both eyes. I got a
black spot in my right eye which has persisted for months. Also,
my extremities started to get freezing cold, especially feet and
hands. Other times, I would get hot flashes (not normal for a 27
year old man) or night sweats, or shivers in the cold. My body's
autonomic nervous system, charged with keeping my body
temperature normal and with regulating my feelings of hot and
cold, was somehow out of whack. I'd take my temperature and it
would always come up 97.5, whereas I'd always registered 98.6
before. Also, I got burning sensations on my skin and these
would move around a lot. It felt like a sunburn, or as if I'd been
stung by a jellyfish. I got that unpleasant feeling of things
crawling over my skin, too. Oh yeah, and trouble swallowing and
with reflux.

Well, around this time I went to see a neurologist for the first
time. I think he had some suspicion of MS based on my
symptoms, although my neurologic exam was normal. HE
ordered an EMG test and an MRI of brain and spine with
contrast. These all came out normal, except for a cyst on my
pineal gland, which apparently is not attributed to any of my
symptoms. He decided to take the wait and see approach. After
a few weeks I started to get bad headaches, similar to tension
headaches. In fact I had a headache that lasted about 6 weeks
and was more or less constant. No analgesics really helped it
much, but I took lots of ibuprofen and tylenol. You can't just take
that stuff 24/7 though.

Around July, all of my problems seemed to be subsiding. I was
ecstatic and feeling like things were getting back to normal, but
my excitement was premature. In August I got hit again with
paresthesias, more urinary problems, cold limbs, increased
visual disturbances, muscle fatigue, violent fasciculations,
transient numbnesses. This got me very depressed. Things had
been getting better over a few months. If this was a Cipro
reaction, why would things again take a turn for the worse, and
why would I be getting new symptoms many months out from
Cipro? I saw another neurologist who said MS was unlikely,
based on another normal neurologic exam. I had lots more
tests.

The symptoms persisted and didn't seem to be getting much
better. Then in October I was hit with another layer of symptoms.
This time it was vertigo. I would get major visible tremors, and
then something different. I'd feel as if I was moving slightly, or
swaying, even when I wasn't moving at all. Then I'd feel as if
things around me were shaking. If I was working on the
computer, I could see the monitor shaking in front of my, even
though I knew it couldn't possibly be moving at all. Very
disturbing. Also, I got new onsets of painful burning pains over
different patches of my body. I started feeling as if my memory
were really shot (it's never been great, but I was forgetting
appointments and forgetting little correspondences I'd had the
day before). I started thinking, this must be MS, and it just didn't
show up on the tests.

My symptoms have waxed and waned a great deal over the
months. There have been weeks and even months where things
aren't too bad. Then I'm hit with a new round of disturbances and
they are oftentimes very different from the ones that came before.
It became very hard to imagine that I would juwst ''get better'' over
time without new setbacks, because my instincts told me that I
was facing a progressive neurological illness. What else could
account for the symptoms? Cipro seemed unlikely. People on
this forum often talked about cycles of their ADRs, but rarely
described new periods of months long improvement followed by
a ''relapse'' that could involve entirely new symptoms.

Finally, I went back to the neurologist yet again. My examination
was again normal, and I had a normal visual test with a
neuro-opthamologist as well. He ordered a new round of MRIs
and these came back normal again. I know that some MSer's
have normal MRIs, but in light of all the different symptoms and
persistent relapses, MS certainly becomes less likely when two
extensive MRI tests seven months apart show absolutely no
changes. I had negative evoked potentials, two sets, that would
also often be positive in the case of MS. I'm still having a lot of
problems. I've tried acupuncture, dietary changes, magnesium,
all kinds of things. This is a long post, so thanks for reading it.
I'm interested in hearing from other people who have had some
symptoms in common with mine due to quinolones. Thanks, JS


From: "Laurie" <laurie@p...>
Date: Sun Dec 21, 2003 10:33 am
Subject: RE: [quinolones] tendonitis in the upper arm...anybody else?

I don't know why so many doctors are not willing to admit what's
documented in so many places. Quinolones DO cause muscle and tendon
pain/damage, they do cause insomnia and anxiety, they do cause visual
disturbances, etc...

I, too, started with some fogginess, confusion, and a feeling like I'd
taken too much cold medicine or something (I hadn't) -- that sort of
"out of it" feeling. THEN, the pain in my left elbow started, and my
doctor (not the prescribing doctor, the Levaquin was prescribed in the
ER) said it must be a muscle strain or pinched nerve. Within a day, my
RIGHT elbow started, and then I found out about the quinolone ADR
(through a friend who is a nurse) and stopped taking the drug. Of
course, I'm lucky -- all of my doctors admit that they didn't know about
the possible ADR and admit, too, that quinolones do all the things I'm
experiencing and that I experienced while on the drug. They've either
read the info I've given them or have done the research on their own
since hearing about my situation. Of course, none of them have answers
for how to proceed beyond what they'd suggest for someone who got
tendonitis from playing tennis, but...

I do have pain in the upper arm, sort of on and below the deltoid, and
in my forearm. My right arm is almost back to normal, although the
muscles in the upper arm and forearm get "tired" and I get a lactic
scorch feeling even when I'm not lifting or pulling anything. Both elbow
joints click now, and get "stuck" sometimes and then only if I crack
them by forcing the arm to straighten do I get full mobility back. This,
mind you, is a MINOR problem, and if I'm left with this for life, I'll
be happy.

What I won't be happy with is if my knees and right Achilles tendon
don't calm down. I have burning, stiff tendons above and below the left
knee, stiffness in the right knee, and burning pain in the right
Achilles tendon. I've been to the orthopedic specialist who said that
the best thing is to get some aquatic physical therapy and stay off the
legs whenever possible, but to keep moving -- doing very passive
range-of-motion exercises and so on so I don't get stiff. He feels (and
I agree) that many people who lose all mobility do so because once
things started to hurt they stopped moving. I know I'm in much less pain
when I've been doing small chores around the house that require short
walks and standing for short periods -- washing the dishes, running the
sweeper, making the bed, etc... If I sit for too long, when I stand up,
I'm in real pain and it takes about 10 minutes to loosen up again.

I'm taking NO pain killers (not even OTC), but due to the inactivity, I
do have swollen ankles, and my GP has put me on Lasix, 20 MG daily. I
just started last night, and felt OK, so I'm continuing with that. I
know having several pounds of water in each leg isn't helping my tendons
-- it's the equivalent of wearing ankle weights, which one wouldn’t do
if one was trying to rest aggravated tendons.

My orthopedic guy also feels that because I'm not feeling worse, and
that I do see improvement (slight) every few days, that the toxins are
probably no longer at active work -- the damage that's been done is
done. He feels that if there were still agents from the Levaquin
damaging my cells that I'd have more constant pain and the pain would be
increasing, not decreasing. I know many people have seen things get
worse even after some improvement, and I'm praying I don't follow that
path. I wonder, though, how symptoms get better and then recur in a more
severe way once the drug is no longer in the system -- the "life" of
this drug in the body is documented by many studies, in many countries,
on animals and people, and there doesn't seem to be too much divergence
in the data. Am I wrong on this?

Anyway, I can verify feeling what Ann is experiencing in the upper arm,
but can offer the news that it does get better.

Laurie

From: "deetjr" <deetjr@y...>
Date: Sun Dec 21, 2003 9:24 pm
Subject: New to the group

I just discovered this group and have a question. My wife has
Fibromyalgia, and so far the only thing that helps is Vioxx. I've
heard that antibiotics may help this condition. It is very hard to
find doctors that know anything about it. Any help or advice would
be appreciated.

Also, I would like to let you know there is a great documentary
video that deals with the problem of antibiotic overuse and abuse.
It warns against taking them for colds, flu and inserting them in
the food chain which can contribute to antibiotic resistance. It's
at www.films.com, key word search -- antibiotics. It's called
Antibiotics: the double-edged sword.

Thanks for your help.

Bob


From: Patti Bower <pattijbower@y...>
Date: Mon Dec 22, 2003 5:25 am
Subject: Re: [quinolones] tendonitis in the upper arm...anybody else?

Two months after taking Cipro, I ruptured the tendon in my right upper arm. The
ruptured tendon caused a vein to thrombose, which not only added to the pain but
also scared the crap out of me! I didn't put the Cipro and tendon rupture
together until October 2003, when I heard about postal worker lawsuits against
Bayer because of Cipro ADRs (my tendon rupture was in June 2002). My doctor
doesn't think the two are related because "it wouldn't have caused a problem two
months later." From all the accounts on this list, I believe "the man in the
white coat" is wrong.

Anyway, I had to trade in my standard transmission Beetle and switch my computer
mouse to my left hand. My right arm is still weaker than it used to be. I'm
afraid to use weights to try to regain full strength because of further tendon
injury. And I have fibromyalgia--didn't have that before Cipro either.

Patti

From: "acurazrule" <acurazrule@y...>
Date: Mon Dec 22, 2003 7:00 pm
Subject: Avelox sent me to the ER...please help

Hi folks, well, it seems that I was one of the unlucky few who and a
reaction to quinolones. I am a 23 year old male in good general
health. I went to the doctor last Monday because I had a persistent
cough and some pain in my temples. They took my blood pressure which
was normal as well as checked my lungs. My lungs were clear. He
diagnosed it has a sinus infection and gave me samples for Avelox
(400mg/day for 7 days) I then came home and prepared to go on a trip
out of state. I live in PA and was headed to NC for a physical/drug
test. I took the first pill before I left. I thought nothing of
it....figuring it was just another antibiotic. On the drive down I
noticed some weirdness with my heart but I figured it was stress and
thought nothing of it. Tuesday came around and I felt about the same
even after I took that second pill. I had my physical on Wed and the
doctor commented on how fast my heart was beating and how high my
blood pressure was. He said I must be really stressed out. I agreed.
The process went fine and I got back to my hotel. Ate some dinner
than popped the third pill. Two hours later my heart started beating
super fast. I was feeling dizzy and nervous. I didn't know what to
do. I called my doc back home and he said it's nothing to worry
about. I decided to go to the ER at Duke University Hospital, the
line was long, I got my vitals taken and my bp was high 160 over 95.
An hour or so later I got retested and it went down a little. The
nurse advised me that if I really thought it was the avelox, than to
just save my money (i have no health insurance right now) and see if
it calms down. I agreed and went bacck to my hotel. I was unable to
sleep at all. The next morning I was to travel back to PA. I felt
uneasy about it so I stopped at the local emergency room in NC and had
a doctor look at me. EKG was normal and he felt the rapid heart
beat/high bp was induced by the meds as well as stress, lack of sleep,
etc. So from there I came back to PA. Arrived Thursday night and was
fine for most of the day Friday until I just went into a horrible
panic attack. I could not control it. I was scary to the point where
I thought I was dying. So I went to the ER again. They did the EKG,
normal again, chest xrays, normal, blood work, normal. When I first
got there my bp was 165 over 98. They gave me Ativan to calm me down.
On the retest my bp went down to 144 over 95. I'm still worried
though as it seems my heart is still beating hard and fast. I had my
bp checked today and it was 155 over 95. How long will this stuff
stay in my system? I only took 3 pills and the last pill I took was
on Wed. Is there anything I can do to get back to normal? Or how
long will it take until these symptoms go away. I'm supposed to be
young and healthy, not worried about heart problems. Thanks for your
help.


From: "ssarappo" <ssarappo@y...>
Date: Tue Dec 23, 2003 12:57 pm
Subject: Re: My Avelox Nightmare Story

Nice to hear your story of recovery. I took LEVAQUIN at the end of
the summer and like you I hade a reaction of anxiety and
depression. I was put on Paxil and Xananx and like you the Paxil
made me feel worse. I stopped and sure enough The
depression and anxiey came back worse then ever. I have just
went back on antidepressent meds. I'm taking Lexapro for a
week and I notice a little difference all ready but not much. Like
you I never had a day of depresion or anxiety in my life before this
nightmare. I'm 3 1/2 months into this nightmare and hopefully I'll
recover like you. Is there any other advice you could give to help
with the recovery I would be gratefull.


From: "macman4311" <macman4311@y...>
Date: Wed Dec 24, 2003 7:30 am
Subject: cipro

hi all i took cipro back in august for a prostate condition.after a
week on cipro i still had burning, not thinking it was a reaction to
cipro i went back to the doctor, he put me on a sulfa drug for 10
days..at the end of the sulfa i had a skin rash on my arm,burning on
my skin ,dried skin on my penis, burning on my feet,stiff neck,
headache,depressed,i have been checked for everything but nothing
shows up in the blood...... oh i forgot a swolen lip which started
midway through the cipro and is still here..does anyone know about
stevens-johnson syndrome? how long will this last? thelast time i
saw my doctor he told me to see a shrink--h-e-l-p..

From: "jherara" <jherara@e...>
Date: Sat Dec 27, 2003 6:24 am
Subject: (PLEASE HELP!!!) RE: Doctors' Responses to Patients' ADRs

I have allergic rhinitis and asked that my primary physician not
prescribe Levaquin to me again after my last sinus infection b/c on
day two of the treatment I broke out with weird spots, like moles, on
my face and arms.

This was the second time I had used Levaquin with the same result. I
was assured that this wasn't the drug, but didn't want to take any
chances.

I also didn't know until recently that Levaquin can cause depression
after taking it and have been experiecing the full range of mood
problems since taking the drug.

My physician called in a prescription for my most recent sinus
infection yesterday (AVELOX).

I have medication sensitivity and always check my meds online before
using them so that my family knows what symptoms might appear if I'm
unable to tell them what's wrong.

Imagine my surprise when I found out that not only is AVELOX in the
same family as Levaquin, but it also causes tendon ruptures.

As I have a history of tendonitis, carpal tunnel, and SI joint and
ankle problems, I called the doctor on call today and asked what they
were thinking.

Doctor's response:

"There are always side effects listed and you will probably find
somthing wrong with any prescription--so prescribing something else
will not change anything."

"Yes, tendon ruptures do occur, but they are extremely rare and the
occurrence was noted in trials--in puppies."

My response:

"So there weren no human trials or any evidence of this occuring in
puppies?"

The doctors:

"Again, you're simply going to find something wrong with anything we
prescribe."


PLEASE HELP!!! My sinus infection is dragging me down, but I don't
want to risk a rupture (among my most severe medication reactions:
sores down my throat and on my tongue from Biaxin and temporary
blindness from another drug). Except for the rhinitis I am now
extremely healthy and have, through exercise and diet, finally
brought my tendon and back problems under control.

Should I wait and seek a second opinion on Monday? Were any of the
ruptures experienced by people on this forum uncorrectable or
debilitating.

"I hand these drugs out like water and never heard of such a silly
thing"

"Take some Paxil and call a shrink" "You need to lose some of that
stress"

"Nonsense"

"You will be just fine, it should go away in 2-3 days when it
leaves
your system"

"Muscle pain starting 2 months after stopping Levaquin?? Ha! Not a
chance"

From: "ga_wells" <wells@k...>
Date: Sat Dec 27, 2003 1:08 pm
Subject: Cipro and breast enlargement

I have a long list of reaction that can occur with Cipro. Breast
pain is on the list. With in the first week of a 14 day session both
my breast started having shooting pain.The left breast became
enlarged. Not good since I am a male. Has anyone else had this
experience. Note: My doctor did not know this was one of the side
effects, so he went looking for other causes. This could have happen
to others and there doctors did not make the connection.

Thanks


From: "golfridge22" <johnirwin@c...>
Date: Sat Dec 27, 2003 6:01 pm
Subject: Tequin

Hello all,

Thanks for the posts they have been very helpfull. I took ten days
of tequin in August 03. Since then I have the worst five months of
my life, but I am getting somewhat better. As many of you I have had
every test know to man with all of them coming back normal... I
also hit my head on a post while taking Tequin and I think I may have
gotten a concussion... but after reading this site I dont know....
Many of the symtopms are the same. I am having realy bad anxiety and
headaches.. what can I do for this? It seems that may of you say not
to take over the counter pain medicaiton.

Any help?
John



From: "svchickadee" <svchickadee@h...>
Date: Sun Dec 28, 2003 7:49 am
Subject: tendinitis

I have not posted for a while. My
adr began in June 2001 with a Rx for Cipro for a sinus infection.
Within 24-48 hrs of the first dose I began to feel unusual pain in
muscles, at ends rather than central, but thought it was muscle
rather than tendon attachment and insertion pain and attributed it
to doing things I had not done for a while... so continued the Rx to
completion, a huge mistake.
Within a few weeks I was having pain in connective tissue in
back, neck, shoulders, elbows and hips, which a masseuse told me was
indeed tendon and not muscle pain and I realized it was probably an
ADR. A year later after a road trip and much climbing in and out of
a van my knees also became swollen and sore. I now realize that
whatever I do must be in moderation as the cipro injury is
aggravated by excess activity. I feel some improvement over the
years and am able to do my work as a silversmith if I do a couple
hours a day rather than a full days work, same with gardening or
whatever..
My diet is carefully monitored, no meats or dairy or eggs
unless marked that no antibiotics were given, very little caffiene,
and I take CoQ10, Mg and am recently trying Vit D in RDA quantities.
I read an article that Vit D deficiency is widespread and I live in
Washington state where sun is very limited in winter months, and
that deficiency may affect the immune system.I think time is the
biggest healer and care to not reinjure the gtrossly insulted
tendons. I alst lose my senses of smell and taste but those are
returning slowly as well.
Wishing recovery to all affected. Your sharing of ideas has
been so helpful through this life change. Joanna

From: "ddmdoro" <ddmdoro@y...>
Date: Sun Dec 28, 2003 12:07 pm
Subject: Cipro Tremors Anyone?

Hi all,

This is the 1st chat room that I've ever entered, let alone join.
I'm wondering if anyone has experienced TREMORS from Cipro or
similar.

I took Cipro (for a UTI) 250mg 2x day for 5 days in early October.
In retrospect, I did have chills at night and did remark that I was
REALLY depressed (FLAT mood) a few times.

However, it wasn't until mid October (approx.10 days after the last
dose - and 5 days after treatment for a yeast infection)that I began
to notice tremors in both hands and a general, scary feeling of
having something REALLY wrong w/me. Remarked that I felt as if I'd
consumed 15 cups of coffee (I don't drink caffeine)and whole body
felt shaky (anxious).

Other symptoms include alarming weakness in arms - feeling like I
should have both arms in slings in order to support my elbows.
Holding the phone is sometimes difficult; typing w/fingers not doing
what they're supposed to do; aching arms. Calf muscles feel like
they're bulging when standing still or pressing on the gas pedal.
When walking, calf muscles are fine. Oh, and the inside of my right
knee feels like there's an arctic breeze blowing on it from time to
time.

Neurologist suspects a virus. I suspect Cipro. Got confirmation via
phone that the MRI is OK. Doctors who conducted the EMG say it shows
no muscle nerve damage BUT does show tremors where tested - in my
neck, arms, legs...

I go back to consult w/the neurologist in another three weeks.

Because it takes SO long to get seen by doctors, have been trying
what I find on Internet. Have been trying chelated magnesium for 4
days now, along w/calcium and a multi.

Has anyone else experienced these FULL body tremors and, if so, do
they ever go away?