July 2004 Post Marketing Report

19341 From: paul keels <paul_keels@y...>
Date: Thu Jul 1, 2004 1:15am
Subject: Re: Re: Nerve Conductivity Tests?

Thanks, Gary and others who responded to my original
inquiry re nerve conduction tests. I had the test a
couple of weeks ago, conducted by a Doctor of Physical
Medicine and Rehabilitation, specializing in
Electrodiagnostic Medicine. I've received a hard copy
of the results, but haven't yet discussed them with my
physician. I got a call from his office yesterday,
referring me to a neurologist for a follow-up
appointment next week.

You were right, Gary. The nerve conduction test uses
electrodes. The emg (electromyogram) uses needles. He
did the conduction test first, followed by an emg of
my lower right leg only.

The summary of results reported an "abnormal study...
consistent with a mild peripheral polyneuropathy which
appears to be sensory and motor... including mild
bilateral carpal tunnel syndrome... Potential
etiologies include cancer, cisplatinum treatment
during chemotherapy, as well as adverse reaction to
Levaquin... Cisplatinum is typical for creating
peripheral polyneuropathies and is quite common.
Cancers can create various neuropathies, typically
sensory but often can be mixed motor and sensory.
Levaquin has been reported to create periperal
neuropathies as well. However, not having had
emg/nerve conduction studies along the course of the
patient's symptoms makes it somewhat difficult to
ascertain the true etiology for these abnormalities."

When I told the doctor of my toxic reaction to
Levaquin almost four years ago, he said I was "one of
a very small percentage of patients," but added that
he couldn't believe this was the first nerve
conduction/emg test I've had, considering my history.

I'll let you know what the neurologist has to say next
week.

Thanks again to each of you who responded. It was very
helpful.

-Paul

19343 From: telisa78 <telisa78@y...>
Date: Thu Jul 1, 2004 3:56am
Subject: adverse effect

My sister was given Levaquin for a kidney affection. After taking the
medication for about three days she began to act strange. She was
confused, could not sleep, depressed and paranoia. We took her to the
emergency room. The doctors could not figure out what was wrong with
her. So she was examined by different specialists, and given
different test. All of the test results came back normal. Well, fluid
was discovered in one of her lungs so they diagnosed her with
pneumonia. They completely disagreed that the medicine caused such a
reaction. Even my family members do not believe that the medicine
caused her to act this way. From day one I somewhat believed that it
was the medication. After reading the different messages
in the forum I strongly beleive that the Levaquin caused her to act
this way. Prior to taking this medication she was very normal. Four
weeks has pass and she still can not sleep, often confused, and
sometimes irate and trembles. Has anyone found anything that may help
these effects. Please email me
Tee


19345 From: chiggins1066 <chiggins1066@y...>
Date: Thu Jul 1, 2004 1:05pm
Subject: Re: Nerve Conductivity Tests?

I had 2 EMGs done. One on my arms, and one on my lower legs. The
arms revealed "bilateral ulnar neuritis" and the lower legs showed
slight nerve damage. In both cases, the nerves were "slow" (much
worse in the arms).

The hands and arms have improved, although I still have problems.
When I was first floxed, I had raging paresthesia and pain in hands,
along with swelling and a sunburn-like rash. Now it is very slight
numbness in one of my fingers and numbness at night -but not always.
About one out of every 5 nights or so.

My feet have shown no improvement. Absolutely nothing helps.
Klonapin, Neurontin, Lexapro, supplements, physical therapy,
accupunture, it's all a waste of time.

I also have some skin crawling on the back of my neck, although it is
pretty mild.

I'm exaclty 3 months post-floxing. 2 more weeks of this and I file a
lawsuit against bayer corporation.




19347 From: kristen harding <krissy@e...>
Date: Thu Jul 1, 2004 6:43pm
Subject: Re: speech problems
You really need to see a doctor. 2 1/2 years ago I did the same
thing, I let it go on for a month by time my husband took me to the
er, I had a severe care of Bacteria Mengatits(SP), and Guillain-
Barré syndrome and then hour after I got into ICU I went into a
coma. Not trying to scare you but when you have a headache that will
not go away and problems walking it is something serious, don't do
what I did and wait till you have to get medical help. Because I
waited to long I now have Neuropathy and was in a wheelchair for 2
years, just not getting back on my feet. It has taught me to seek
medical advice. I would rather be told its nothing than to wind up
back in ICU.
Krissy

Hi Krissy -

Yes, the surgery did work. I had the casts on for two months (they
were changed every two weeks). When they finally came off and they
told me to stand up and walk I really freaked. But I did - with
help, and the next day got a walker. I used that for only a few days
and was walking on my own. However, it's a SLOW process. My casts
came off February 1st, I think, and I'm still working a feeling
totally normal with my walking. I walk a couple of miles a day, but
I have to discipline myself to keep from limping and my achilles
still feel tight in spite of physical therapy, exercises, etc. I got
a staph infection on one of the incisions, unfortunately, that set
me back a bit. But overall I am THRILLED to be walking as well as I
am. My doctors had never before done both legs at the same time, so
I was charting new territory. If you want to "talk" about this
more,you can email me at carolthorton@a....

Best wishes,
Carol
19349 From: lindahpcss <lindahpcss@y...>
Date: Thu Jul 1, 2004 9:07pm
Subject: Neuropathy

Hi Everyone

Just wanted to say thanks to everyone who responded to my request for
information on Cipro and associated neuropathy. We took the
information to the family doctor who immediately agreed that Tom
should stop the Cipro. He took care of calling the knee surgeon and
letting him know. Tom's hand has now started to regain some of it's
ability to move but it is still not great. Last night Tom's CLL
doctor called to see what was happening. When we explained what was
going on he was appalled that Tom had not yet seen a neurologist or
a plastic surgeon (it's a week later and we have heard nothing about
the planned follow up appt.), nor had he been started on any type of
steroid. He was concerned about the continuing problems in the
hand/forearm and expressed that there may be permanent mucle tissue
death. He felt that he should have seen one or the other specialist
the same night. HE also added that he felt that the "cipro thing" was
crap. Well, about 20 minutes later he called us back and advised Tom
to not take the cipro any more, or any related medications. He had
apparently gotten off the phone and thought that he should be able to
back up his "crap" label. He apologized for being hasty and admitted
that we had very possibly been right. It was sure nice to have a
specialist admit that he had been wrong. Thought that we would never
see the day. If the steroid thing doesn't help and the hand gets
worse he has directed us to go to the one of our larger hospitals,
where they have 24 hour access to the required specialists and said
to kick and scream until we get one or the other of the required
specialists.

I have also taken the information that everyone so graciously sent to
me to my own physician and hope that they will share the information
with others.

Again. thanks to everyone who replied to my request. Without your
help, and information, Tom could well be having even worse problems
and also be fighting the uphill battle to educate his doctors.

Linda Hayward


19350 From: bobgroz2001 <bobbygr@r...>
Date: Fri Jul 2, 2004 0:18am
Subject: A question about marijuana

Prior to taking the legal avenue for pain (with my prostate) I used
medical marijuana to manage the pain and it worked very well.

At the time - I stupidly became afraid of our government - and took
the legal drug - vioxx to kill the prostate pain. It combined with
the cipro - and to this day I suffer in agony.

I'm wondering - are there any studies - or does anybody have any
experience in using marijuana to help relieve these horrible CNS
problems. The anxiety is just awful - and I'm thinking about trying
marijuana.

To those here with PNS pain - it might really help you. I had
absolutley horrible prostate pain - and it really helped me with it.

Anyone that may have heard anything about this helping the CNS hell
that I'm in - I'd love to hear from you.

You can email me privately, if you're afraid to publically say
anything.

All I know - is I need relief. Thus far I have found nothing. I need
help to sleep - and need relief from this suicidle anxiety.

As far as me posting this publically - I pity the agent that would
even think about coming after me. I've got nothing to lose.

Thank you,

Bob


19351 From: jeanhanna212 <jeanhanna212@y...>
Date: Fri Jul 2, 2004 2:26am
Subject: vein discoloration- ADR?


Lately I have been noticing that all my veins in my hands, arms, and
legs are raised and colored green. I am only 24 and really have no
reason to have varicose veins. My hands are almost green from all
the veins. Is this related to the quinolones??


19352 From: <snapdragon928@w...>
Date: Fri Jul 2, 2004 0:32am
Subject: Re: Digest Number 1589


I am seeing the DR tomorrow and I have listed all the symptoms and have made
copies of info online concerning avelox and quinolones in general. I have
included a list of side effects and have highlighted all the ones I've had. The
muscle weakness and fatigue and speech problems are there. Yes, it says you
could have these side effects but who would have dreamed that it would still be
going on after 7 months or come back with a vengeance like it did. It could be
worse as I have read on these sites so I am thankful But it doesn't make my
problems any easier. I even found another case of a tourette like syndrome in the
clinical toxicology review volume 20, #3 dated 1997. So good luck to me :-)


19354 From: mls0618 <mls0618@y...>
Date: Fri Jul 2, 2004 3:43pm
Subject: ringing in ears

Does anyone else have ringing in the ears constantly? I am looking
for any information or insight to this new symptom?
Thanks,
Madeline


19358 From: Z Z <lev_damage@y...>
Date: Fri Jul 2, 2004 5:21pm
Subject: Re: ringing in ears
I have had tinnitus for about 4 years after being poisoned with Levaquin.
--- E.


19361 From: chiggins1066 <chiggins1066@y...>
Date: Fri Jul 2, 2004 9:40pm
Subject: Re: ringing in ears

I've had some ringing (more than usual), but the events are few and far between.


19362 From: <djcmick@a...>
Date: Fri Jul 2, 2004 5:47pm
Subject: Re: ringing in ears

Go to ATA.ORG. It's the American Tinnitus Association. And yes, FQ'S can
cause Tinnitus.
Dan
19365 From: pseltes <pseltes@y...>
Date: Sat Jul 3, 2004 0:24am
Subject: took ofloxacin for UTI treatment

Hi. I once had UTI and my doctor prescribed qinolon (ofloxacin). I
got better, but sometimes have recurrent burning or tingling
sensation that makes me want to urinate. I thought it's my UTI
recurring - but after reading the forum and some related articles in
the internet - is this one of the adverse effects of taking
ofloxacin? I don't know if the "pins and needles" sensation is the
same as the one i am experiencing. But if feel it in my bladder. I
also can't see the cause for my UTI to recur becuase i had been
drinking more than 8 glasses of water everyday. If there is anybody
who is experiencing this - i'd appreciate a post. THanks.


19370 From: rionews <rionews@y...>
Date: Sat Jul 3, 2004 4:25pm
Subject: Re: took ofloxacin for UTI treatment

Yes. I had a lot of bladder problems after taking Cipro and to this
day the only explanation I can find is that they were caused by
Cipro. I have tingling, pins and needles as well. The catch 22 is
that when they started the doctor's only idea was to put me on
another several weeks' worth of Cipro, which did nothing to help.


19373 From: cjt2202 <cjt2202@y...>
Date: Sat Jul 3, 2004 11:15pm
Subject: Phenylketonuria?

Has anyone considered this as a source of the neurological problems
associated with quinolones?
Levaquin shut down my liver. maybe it took away my ability to break
down the amino acid phenylalinine.
see website for more information:
http://www.healthatoz.com/healthatoz/Atoz/ency/phenylketonuria.html
Good luck,
cjt


19375 From: shelley <blondeambitionz@y...>
Date: Mon Jul 5, 2004 3:35pm
Subject: Letters submitted to Congress

I submitted letters to Congress letting them know what happened to
me after taking Cipro. I received two letters back from my
Congresswoman Elizabeth Dole. She stated that she has forwarded my
information to have my case reviewed. I don't know if this actually
means anything or not. Did anyone else receive a letter like this
from their Congressman?

Thank you all!



19380 From: <kings1978@y...>
Date: Mon Jul 5, 2004 7:03pm
Subject: How much you wannna bet ...

How much you wannna bet this guy was given an FQ for his
pneumonia and more recent lung problems?
Austrian President in Critical Condition

http://news.yahoo.com/news?
tmpl=story&u=/ap/20040705/ap_on_re_eu/austria_president

Critical points:

QUOTE Security guards at Klestil's suburban Vienna home used a
defibrillator to revive the 71-year-old president. END QUOTE

QUOTE Klestil suffered from a severe case of pneumonia in 1996, and
his lung problems turned serious again in recent days. END QUOTE

QUOTE In late June, he canceled a public Open House at the Hofburg,
the central imperial palace where the presidency is based, because of
complications following surgery on both of his Achilles tendons. END
QUOTE

Now why the hell would a 71 year old man just have magical mystery
problems requiring surgery on BOTH achilles tendons? Connect the dots
19381 From: kristen harding <krissy@e...>
Date: Mon Jul 5, 2004 10:30pm
Subject: Re: ringing in ears
I do have ever since I was given quinine (the drug they use to give
for malaria) for my muscle spams/pain in legs. They have never
stopped the ringing, and some days swear they about drive me crazy.
Krissy


19382 From: chiggins1066 <chiggins1066@y...>
Date: Mon Jul 5, 2004 11:36pm
Subject: Re: How much you wannna bet ...

No doubt in my mind at all. He was given Cipro most likely.
I remember when I was first floxed. The very first pain I felt was as if someone hit me with a baseball bat in the wrist. Then the Achilles tendon pain started settling in... I was fortunate that I didn't suffer a rupture.
And the president probably doesn't even realize his tendon issues are a result of the medication.


19383 From: shelley <blondeambitionz@y...>
Date: Tue Jul 6, 2004 0:35am
Subject: Re: How much you wannna bet ...

I bet you're right. I bet it was a quinolone. How sad for this man.

19384 From: shelley <blondeambitionz@y...>
Date: Tue Jul 6, 2004 0:38am
Subject: Re: ringing in ears

My ears ring too. My hearing is not as strong as it was before the


19385 From: shelley <blondeambitionz@y...>
Date: Tue Jul 6, 2004 0:42am
Subject: Clostridium Difficile aka C. Diff

Has anyone who has been floxed also been diagnosed with Clostridium
Difficile? If you aren't familiar with what this is, it is also
known as antibiotic associated diarrhea. The normal bacterial flora
in your gut is killed by the antibiotic and the bad flora flourish.
I was diagnosed with this shortly after taking Cipro, and required
me to take another antibiotic to clear it up. It cleared up but I
just had to take another antibiotic called Macrobid and now I think
I have C. Diff again. Once you have it once, you are prone to it for
the rest of your life. How lucky am I? The Cipro really did a number
on my intestinal tract.


19387 From: shelley <blondeambitionz@y...>
Date: Tue Jul 6, 2004 0:53am
Subject: Re: adverse effect
Tee,
I too suffered the same symptoms as your sister. I am about 100%
sure that what caused her sudden change was the Tequin. The doctors
would never admit to me that what happened to me was because of
Cipro. Do not be surprised that they're denying it.

Your sister is not alone. It will take time for her to get better. I
am just now getting back to normal "mentally", still struggling with
my physical health. The things that helped me get well again was
support from my family, therapy (i did have to go on anti-
depressants which have helped wonders)and my new faith in God. Just
give her time hopefully she will have a quicker recovery than me.
Continue to support her and let her know you are there for her.

19390 From: Debra Morse <debm@c...>
Date: Tue Jul 6, 2004 9:54pm
Subject: Re: Letters submitted to Congress

Hi,

Yes, I received two letters from my congressmen but don't hold your breath on
getting any REAL action on the message she forwarded for you. That's the same
message I got from my two and the people they forwarded it to was the FDA!!!
The message I got back from the FDA was nothing but a bunch of claptrap rubbish
defending the FDA for ever releasing quinolones to market and the standard advice
"have the people in your support group contact the FDA's Medwatch and file a
report." HAH!!!!!

Debra

19394 From: dutch7142000 <dutch7142000@y...>
Date: Wed Jul 7, 2004 3:40pm
Subject: Rash

I recently had surgery and was given Levaquin pre-op and Contamycin?
post op IV. I was given other meds IV and orally but have had a
couple of them in the past with no adverse reaction.
I was sent home after surgery with a prescription for Medrol dose pak
and benedryl and a nasty rash. The rash looks like the tiny water
blisters you get after a BAD sunburn before you start to peel. I am
trying to find out which
medication would have caused this rash. The meds I took for this
surgery that I HAVE taken before include:
Phenegran (I.V)
Norco (oral)
Drugs I HAVE NOT taken prior to this surgery include:
Levaquin
Ativan (I.V.)
Contamycin (spelling?)
Morphine (I.V.)
Any help or direction would be greatly appreciated


19395 From: virgotw95 <virgotw95@y...>
Date: Wed Jul 7, 2004 4:42pm
Subject: Another UTI please someone help

Hi,
I am having another UTI. I had a UTI last September and was floxed
by Cipro. The doctor has prescribed Macrodantin. I am too scared to
take another antibiotic. Can someone please tell me alternative ways
of getting rid of this? I have been drinking a lot of cranberry juice
but I still feel that the infection is still there. Please please
help me, i am in desperation.
Tamara



19400 From: beirutjim <beirutjim@y...>
Date: Wed Jul 7, 2004 11:13pm
Subject: Does this sound like a floxing?

Okay, so after reading these messages on/off for the last couple
months - first off - this may sound tired, but Thank You All for
sharing your stories. It does make me feel better to know that I'm
not as crazy as the medical profession wants to insist.

2nd - I'm still unsure if I've been floxed, or if something worse
(MS, etc) is happening. Seems awfully coincidental that my story
seem SO SO much like so many others on here though. To wit:

41 years old - Prostatitis diagnosed about 6 months ago (Merry
Christmas!) and put on CIPRO for 2 weeks. After 7 days felt
shooting pains in legs, back, and feet, and left foot started to
feel numbness during long periods sitting at work (am a computer
programmer type). Doc said not a side-effect, finish the dose, so I
did. Prostate issue seemed to clear up after about the third week
but by then raging insomnia and fears (dying, MS, paralysis, etc)
had settled in. Lived with that for 2 months or so - doc sent me to
therapist, which helped a little, in that he actually helped me
discover (and correspond with) Dr. Cohen. Also finally got Primary
Care Physician (PCP) to send me to a neuro to rule out MS. He
begrudgingly had a lower MRI done, to rule out spinal nerve
compression (came back negative). Handed him copies of Dr Cohen's
study only to get brush-off as "never heard of this, can't be
true". Told it's all in my head - PCP finally prescribed Paxil for
anxiety. And I must admit, that seems to be working, as sleep
finally started happening again. But pain in feet when walking,
hands falling asleep at night, pins-and-needles in feet and hands
almost continuous these days. No answer from PCP other than "give
the Paxil time" -apparently the theory is that all these phantom
pains are caused by anxiety, as opposed to the other way around.

Anyway, foot/hand pains continuing to this day, and now vision
seems "weird". Eyes feel full and distance vision not what it used
to be.

So - does this sound like classic floxing? Still worried about
possible other things (mostly MS, as I've got friends with that and
I've watched first hand the devastating effects).

Have recently started Magnesium/Calcium/Zinc pill regimen, after
reading of some successes by others...any other ideas?

Thanks for listening. Keep up the good fight! We'll get better
somehow...

Jim


19401 From: psycho_wolf_pup <mythfang@h...>
Date: Thu Jul 8, 2004 1:41am
Subject: Re: Does this sound like a floxing?


Yep, sounds like a classic case of the floxin toxin.

For me, in my youth (21), the flox hasn't had too much of a serious
side effect, but I've had VERY odd things happening to me post-flox
that I can't figure out with my research.

But thats besides the point. All I can suggest to you is to take
things a day at a time. Stay away from chicken (most treated with
flouroquinolones to keep them 'healthy' while alive), lots of tap
water sources (flourine or something used to treat water, has effected
a good number of people by causing a cycle). Most beef and pork is ok
I beleive.

It seems your docs have ruled out most other things for you. They
aren't told everything about the wonder drugs they give you, so its
not suprising they just brush you away. Though their knowledge won't
help you even if they agree.

The biggest healing factor with flox is time. The next biggest is
support from friends, in my opinion =)

Hope it all evens out sooner than later for you =)


19403 From: Bradley Smith <bmsbms_8@h...>
Date: Thu Jul 8, 2004 3:36am
Subject: RE: Rash

I took 3 doses of levaquin in May 2003 and awoke on the 4th day with
thousands of tiny little water blisters on my face. They eventually
sloughed(sp?)off. When I called my dr. he told me to immediatly stop
takiing the Levaquin that it was a severe allergic reaction, I have other
ailments from the Levaquin also.The tiny water blisters sounded so familiar
to me that I thought I would let you know my story.

Best of luck getting to the bottem of it
Sarah

19404 From: k_desalvo <k_desalvo@y...>
Date: Thu Jul 8, 2004 3:56am
Subject: Cipro and peripheral neuritis

Hello,
Any advice or thoughts. April, I had a uti, given cipro 1st week of
May. Living in Hawaii I spent a few hours in the sun. 2nd degree
sunburn, since the sunburn I have bleeding in the top layer of my
skin. 2 weeks agi my Dr. suspected lupus and put me on prednisone. 5
days later I woke up in excrutiating electrical type pain. Went to the
ER, big mistake. Over the weekend I had spent getting shocking jolting
pains every few mins. Everything was seeming to ease until last night
same jolting pain, home from work and hating life. I have allergic
reactions to sulfa, erythromiacin, amoxicilin. Today they did a biopsy
for the skin and waiting for that. Sound like adverse affect?

Thanks if advance
19411 From: taundaleah2001 <taundaleah@m...>
Date: Thu Jul 8, 2004 4:28pm
Subject: My Anotomic EMG Results

Well this and a $1.00 will get you a cup of coffee..

My neuro appointment was today, my anotomic EMG showed the absence
of sympathetic response in my foot and a valsalva ratio at the lower
level of normal.

I asked the neuro PA what this ment and she said, well we told you
that the levaquin had a toxic effect on your nervous system, but
siad this was very minor and not to worry about it.. come back in
two months for another appointment.

So at least the numbness is found on the emg, but that doesn't help
me understand whats going on or help with the fear that this is MS
or something that will do permanent damange.
Anybody have any ideas?
Taunda





19415 From: garym52 <ggmab@f...>
Date: Thu Jul 8, 2004 6:29pm
Subject: Re: Does this sound like a floxing?

I agree with everything that you have said with the exception that
it is going to be a rough few months. I don't want to be a downer,
but my adr's have lasted for over a year now. Also, many people
here have suffered for years. That being said, there have been many
people that return to let us know that they have recovered.

19416 From: k_desalvo <k_desalvo@y...>
Date: Thu Jul 8, 2004 7:03pm
Subject: Relieved yet concerned

I just wanted to say how relieved I am for finding this information.
I've been taking many blood tests, had biopsies on my skin yesterday
and they still haven't ruled out lupus or vasculitis. Yesterday I was
literally in tears because Dr's don't seem to understand the part when
I tell them the pain is like I am being shocked. Last Friday 2:30am
when I woke up with the pains I ended up in the er, the Dr there was
so bad, he asked me over and over again "what do you want me to do for
you, and also he told me with my allergic reactions he would be afraid
to treat me. Over the weekend I continued to get quick shocking
stabs. The past 2 nights I am having the electrifing pain again. My bp
is extremely high, ususally its below normal. I'm taking prednisone
for the rash on my legs, but I am unsure if I am bloating from that or
the Cipro. I stopped taking the Cipro when my feet had swelled up like
clubbed feet. So I don't think the prednisone is helping but now I am
swollen everywhere. I did read somewhere that some of the symptoms
don't arise for a few months? I was on it in April, thats why I am
pretty sure this is what my problem is.

After finding out all this information I printed a lot of information
for her, only to find out she has the day off today. GRRRR!

I guess I am getting concerned with the length of time this is going
to go on, are these attacks in the middle of the night going to
continue and leave me irreversable damage.

Guess I am rambling,
KD
19421 From: kanimal83 <kanimal83@y...>
Date: Thu Jul 8, 2004 11:07pm
Subject: to beirutjim+k desalvo

the bad news - yes, from the sounds of it u have been floxed. i
was floxed 3.5 years ago. - the good news is no matter what you may
think, as u've never experienced anything like this , or what u may
read in terms of symptoms of other diseases - u dont have anything
other than being floxed. - which could be bad news as at least with
some of the other diseases - someone might be able to tell u whats
going on, and figure out a way to provide a cure. in years of reading
message boards , i've never heard of anyone coming down with any
disease as a result of being floxed. i know at times it can really
mess with u'r head thinking u have all these different diseases. and
if u do research as everyone else has done -i can tell u it could
sound like 3 or 4 different things when in fact its nothing other
than the effect of being floxed. it seems to mess with your nervous
system in way's no one know's. there are alot of theories out there -
but really none that can be backed up or substantiated. and it seems
everyone is effected in a slightly different manner. we all have alot
of the same problems - but also at the same time have other problems
that are unique to each individual. some people recover in a short
period of time - a couple of months - some take a long time - years.
and some never seem to recover. depending on how bad u are, somewhere
down the road in a month or two - or even in a year or so - u may
develop diffent problems than the ones u have today. the only thing
that seems to help is time - for some its quick -others its
agonizingly slow.
first i would keep a daily log -in detail - as u dont know how
long u'r in for. it can help tremendously in finding out what u can
and cant do. you find patterns to alot of these problems.
dont believe everything u read here on this board or any other
board. it seems one person says something then everyone else swears
to it. everyone is different and things that work for one may not
work for anthor.
doc's arent all they are cracked up to be - just like any other
profesion - some are good -some are bad - some are totally arrougant -
they think if they dont know about it, it cant be. and some are down
to earth and receptive. if u'r not getting anywhere with u'r doc -
dump them - there's thousands more where they came from. dont forget -
it was a doc that messed u up to begin with!!!
dont think of things that are nutrional (minerals,
vitamins,herbs etc) as being good for u. they may be - but it
isn'talways the case. it's an unregulated industry - u dont always
know what u are getting - and alot of people that have been floxed
cant tolerate these things. pain is not u'r friend - if u try
something and it doesnt agree with u'r body - dont do it.
if u'r like most people u can have every test that there is and
almost always everything will come back fine.
beiutjim - i did the paxil thing to - didnt do anything for me,
except make me sleepy and be able to have sex for hours!!!!!! i could
still feel the problems i was having - but on the paxil u just didnt
care. have to be careful coming off paxil - it can have bad
withdrawal problems - the same as any ssri. the problem is the
withdrawal problems come out as the same problems u got on the drug
for in the first place. dont think the paxil will help with the nerve
pains - as they arent from u being a physco - at time u may make them
worse when u start to wonder what the hell is going on - like i did.
but the nerve probems are real. and u need someone that will give u
something to relax/calm u'r nervous system .
k desalvo - u sound like u have parts of what i have - it took
about 1 1/2 years for the nerve pain to come outin me. at times its
like electric current going thru u'r body - at times - its a terrible
ache to the nerves. the jolts is like a huge electric current that
just shoots thru u'r body. if u go to the paxil withdrawal boards -
they call it the zaps - it can lift u right out of bed sometimes. the
best thing for me is klonopin - again it comes with its own set of
problems - one it can be addictive if let it be, second u can build
up a tollereance to it, requiring u to take more and more to do the
same job. and again u can have withdrawal problems - causing u to get
back the same problems u went on it for. so if u go on it dont let it
control u, u control the drug. but it can provide tremendous relief
to nerve pain. there is also a product called nuerontin (not sure it
i spelled it right)i never used it though. its supposed to help alot
with nerve pain. on the natural side there is b-12 - not the kind in
the store - its called methylcobalamin - it a sublingual - u put it
under u'r tongue and let it disolve. it goes directly into u'r blood
stream. most people have to get it online.- it has a real calming
effect on my nerves, and it can take away the pain, but if i use it 2-
3 days in a row it messes up other parts of my body - but that could
just be me.
hope it helps



19424 From: jeanhanna212 <jeanhanna212@y...>
Date: Fri Jul 9, 2004 2:35am
Subject: one sided headaches

Does anybody have one sided headaches that always occur on the same
side? I get this almost daily on my right side and I also get
ringing in just my right ear. Also, my right eye gets more blurry
than my left. I find it strange that everything is happening on only
one side....


19425 From: psycho_wolf_pup <mythfang@h...>
Date: Fri Jul 9, 2004 3:07am
Subject: Odd problem, doubt it is flox but....

Well, I should asked when it cropped up a week and a half ago, but
better late than never I guess.

My problem is with a private area of my body (just a warning if you
want to stop reading now, otherwise here it goes =)

Basically, about 4 days post-flox I had that insane urge to urinate
thing, lasted from thursday to saturday evening when it just went
away. I did go to doctor and they said it wasn't a UTI or anything,
and if it went away by monday, I should be fine. Otherwise, set up an
appointment with this GP for a better analysis.

Well, it went away saturday, but Saturday I also saw something new. On
the right side, under the head of my penis where it connects to the
shaft, looks like a gouge out of the skin. Its small, only a
centimeter or so long, but very noticible.

GP said it may be an odd wart...so prescribed ointment for it...said
if it is still there by end of this month, he'll refer me to a urologist.

Anyone else have any ideas on what this might be?


19426 From: Laura <lparker30@c...>
Date: Fri Jul 9, 2004 5:59am
Subject: Re: one sided headaches

yeah most of my symptoms are on my left side... it IS weird...
hope you get better soon though
Yes on the headache and the blurry eye.


19431 From: shelli <golubshelli@y...>
Date: Fri Jul 9, 2004 0:19pm
Subject: Re: Re: Does this sound like a floxing?

Amen to that question: Is there ANYONE that has recovered. We have gone thru 18 months of hell now with NO end in sight.
shelli


19432 From: cjt2202 <cjt2202@y...>
Date: Fri Jul 9, 2004 4:44pm
Subject: Re: one sided headaches

Laura,
Are you left handed? Jeanhanna, are you a rightie?
My symptoms are right sided: leg numbness/weakness, arm/hand
numbness/tingling. Blurred right eye. Headache on right, left or
both. I'm right handed.
Also, my right eye is no longer dominate, both eye are equally
dominate. This appears to me that the two sides of the brain are not
in communication any longer, just my guess. Might be a question for
a neuro.
Anyone considering Pellagra testing from post 19422:
http://emedicine.com/ped/topic1755.htm
Lab Studies:
Therapeutic response to niacin in a patient with the typical
symptoms and signs of pellagra establishes the diagnosis.
"Low serum niacin, tryptophan, NAD levels, and NADP levels can
reflect niacin deficiency and confirm the diagnosis of pellagra."
"Low urinary levels of N-methylnicotinamide and pyridone suggest
niacin deficiency and support the diagnosis of pellagra. The
combined excretion of N-methylnicotinamide and pyridone of less than
1.5 milligrams in 24 hours indicates severe niacin deficiency."
Take care,
cjt
19433 From: Justin <jjmg@a...>
Date: Fri Jul 9, 2004 6:07pm
Subject: Re: ringing in ears

Yes, I've had tinnitus since September of last year. I was floxed in
July 2003.

While being floxed and for several weeks afterwards, I had *extreme*
discomfort from sound. Actual physical pain and a sensation of
pressure in my ears. (Same thing with bright light.) Pretty much
all sounds seemed louder to me than usual, and very loud sounds were
excrutiatingly painful. A roomful of people talking was more than I
could bear.

After about exactly two months of this pain from noise, the tinnitus
started, suddenly, in the middle of the night. It woke me up out of
a sound sleep. At first I thought it was a fire alarm going off or
something but once I was awake enough to realize it didn't sound like
a fire alarm (it is much too high-pitched), I realized it was
probably tinnitus.

It has lasted, non-stop, ever since. 10 months so far. I don't
expect it to ever go away.

My hypersensitivity to sound has improved, although it has still not
gone away completely. By October, once I was well enough to be able
to leave the house (I was more or less totally disabled for the first
couple of months post-flox), I went to a concert. It was
uncomfortably loud for me and in fact when the whole concert hall
applauded the first time I actually yelled out and covered my ears
and put my head between my knees. I actually felt nauseous from the
pain. I can attend concerts now without that severe a reaction.
However, little sounds still do bother me. Even the sound of closing
a toothpaste tube cap -- that little high-pitched snapping sound --
is painful. I am used to wincing in anticipation of a sound like
that, but at least I can function now. (My reaction to bright light
has followed the same trend; at first I would scream out if
something I was watching on TV went from very dark to very light, and
I found even a dusky sky at sunset too bright too look at; now I
still have discomfort with sudden changes from dark to light, and the
sky is still uncomfortable to look at during the day, but it's much
better.)

I had a hearing test in October. Many cases of tinnitus are due to
nerve deafness at certain levels of hearing: the brain fills in the
emptiness at that register by imagining a constant sound at just that
pitch. My hearing tests were completely normal: in fact I had
slightly above-average hearing for my age (43). However, a standard
hearing test doesn't test ALL registers: just the ones that are
needed for functioning daily. Like being able to hear conversation
and stuff. I might have deafness at a very high frequency -- a
frequency that isn't required for everyday functioning -- but I don't
know. The ringing in my right ear is at a higher pitch than that in
my left ear.

When I stand up fast, the tinnitus gets worse. It seems to have some
connection to blood pressure, I guess. It is NOT the pulsatory kind
of tinnitus, though.

It is BY FAR THE WORST for me at nighttime when I am trying to
sleep. I am unable to fall asleep anymore on my side. I have to be
very careful to lie on my back with my head centered and facing
straight up. I have two fans going all night long to drown out the
ringing. If I put my head on a pillow, that ear is "protected" by
the pillow from the white noise from the fan, and all I can hear in
that ear is the high pitched sine tone. Even after 10 months I find
it excruciating and horrible. For me, a pillow might as well be the
receiver to a phone listening in on a fax in progress. I just learn
to face up so both ears are exposed to the fan. I rarely hear the
tinnitus during the day, especially if I am out and about. It's only
when it's very quiet that I can hear it. So for instance if I am at
a restaurant (a fairly rare event since there isn't much non-organic
food I trust to eat these days), I won't hear the tinnitus in the
dining room, but if I go to the restroom where it's very quiet, then
I'll suddenly notice it.

The tinnitus is, for me, one of the most upsetting symptoms,
psychologically. Unlike the tendon pain and the neuropathies, it is
always there, lurking. I may not always be in physical pain, and I
do go through "cycles" with the tendon/nerve issues, but the tinnitus
just seems to be the one constant. My suspicion is that some
permanent damage was done back when I got floxed, and that there's
not much hope of improvement.

Tinnitus is very common -- and there isn't much in the way of
treatments. By the way, MANY drugs can cause it, including aspirin.
Aspirin is the most common source, by far. Although normally if you
stop taking aspirin, the tinnitus will usually stop too. Many, many
antibiotics can also cause it -- not just quinolones. Even the old-
fashioned ones. I have a vet who is actually deaf in one ear from
erythromycin, so even an old-fashioned antibiotic like that can be
ototoxic.

I have heard that there is a group in New York City that you can go
to who will make a personalized CD for you with a pink noise designed
to cancel out your precise tinnitus, and that allegedly if you listen
to this CD for like 30 minutes it will stop the tinnitus for 12 hours
or something like that. I don't know how much success they've had,
but apparently they've gotten approval from the FDA. Some day I may
try it. I do have hopes that eventually the tendon and nerve
problems will abate -- that the cycles will eventually get further
apart and less severe -- at least I keep telling myself to hope
that :-). I wish I had similar hope about the tinnitus, but I
haven't come across anybody yet who had it once and has gotten over
it.

- Justin
19434 From: Taunda Nestor <taundaleah@m...>
Date: Fri Jul 9, 2004 6:31pm
Subject: RE: Re: ringing in ears
Justin,
I have had tinitus and gotten over it, well almost. It took a long long
time but It has gone away for the most part. You may want to check out the
forums at earfoundation.com. There are lots of treatment for this
condition. None seemed to work for me except for time.

It started with a head injury in 2001, just like you described I had the
ringing in my ears and the over powering sense of hearing that would make me
jump when a commercial came on .. I still hate that!!

Over the years I found periods where it would lessen and then stared having
periods of no ringing. I had gone a year with no ringing before this last
episode and they are not ringing now. The reason I took the levaquin was
because of a sinus infection that the ENT thought had started the ringing
again.

If you feel pressure in your ear you may have fluid built up behind your
eardrum. I believe that my nerves were so sensitive that even the
slightest bit of fluid would make my ear ring. Have you tried manually
opening your estacian tubes? Try opening your mouth, swallowing or chewing
gum until you feel the pop, when you feel the pop your tubes are open. I
can do that enough to drain the ear and make the ringing and pressure stop.

I have also found that when the ringing starts if I apply heat to the ear it
will shorten the eposide. I put rice in a sock, tie a knot in the end, pop
it in the microwave for a min and apply to the effected ear (I only have one
that rings) After a few days the ringing will stop for me.

I know that not everything works for everyone, but I have also heard great
things about ginko biloba (spelling) stopping the ringing you may want to
give that a try.

I've also heard that usually after about five years the brain will start
ignoring the nerve that is sending the wrong messag and you will stop
hearing the ringing.

Please check out earfoundation.com and good luck!!

Taunda

19436 From: taundaleah2001 <taundaleah@m...>
Date: Fri Jul 9, 2004 10:58pm
Subject: drugtopics.com article

You may have seen this, I had not and found it interesting.

Calls mount for black box warning on fluoroquinolones
Are fluoroquinolones safe? They should be used with caution,
according to Jay Cohen, M.D., associate professor of family and
preventative medicine and psychiatry at the University of California
San Diego.

Cohen is calling on the Food & Drug Administration to require a
black box warning of severe, multisystem reactions on all
fluoroquinolone package inserts. "A small percentage of patients
seem to get multisystem effects from a variety of fluoroquinolones,"
he said. "Physicians don't believe that the drug is at fault because
no syndromes are reported in the literature. Current package insert
warnings just don't make the dangers clear."

Public Citizen's Health Research Group petitioned the FDA to require
health warnings on all fluoroquinolones in 1996. There is no
question that some fluoroquinolones are dangerous. In 1992, Omniflox
(temafloxacin, Abbott Laboratories) was withdrawn after 50 severe
adverse drug reactions (ADRs) and three deaths were reported in just
three months.

In 1999, Raxar (grepafloxacin, Glaxo Wellcome) was taken off the
market after reports surfaced of cardiac arrhythmias and seven
deaths. The same year, the FDA restricted the use of Trovan
(trovafloxacin/alatrofloxacin, Pfizer) following more than a dozen
reports of acute liver failure, including five fatalities.

Cohen studied fluoroquinolone reactions in 2001. The study,
published in The Annals of Pharmacotherapy, found that
fluoroquinolone ADRs can be severe and disabling and can occur after
a single dose. The study examined 45 patients who reported
peripheral nervous system effects, such as tingling, numbness,
burning pain, twitching, or spasms. More than 90% also reported
adverse effects on other systems.

Central nervous system symptoms such as dizziness, agitation,
impaired cognitive function, or hallucinations were reported by 78%
of patients studied. Musculoskeletal symptoms such as joint or
muscle pain or tendon rupture were reported by 73%. Adverse events
involving cardiovascular or gastrointestinal systems, skin, and
special senses were reported by 18% to 42% of patients.

Eighty percent of the reactions were severe, involving chronic pain
and/or significantly limited function. Symptoms were typically long
term, Cohen found, 91% lasting more than one month, 58% lasting more
than one year, and 27% persisting for more than two years. The
reactions occurred in an otherwise young and generally healthy
population, he said. The average patient age was 42, and 62% had no
other medical disorder beyond an infection that prompted
fluoroquinolone therapy.

"I looked only at patients with peripheral nervous system
involvement," Cohen said. "If I had taken all the cases of serious
multisystem reactions, I could have reported hundreds of patients.
Clinicians don't realize that fluoroquinolones can have these
significant toxicities."

In Cohen's study, 40% of patients reported that their physicians
either failed to recognize their neuropathy or dismissed symptoms as
minor; 31% of patients said their physicians prescribed multiple
courses of fluoroquinolones despite the occurrence of significant
adverse events in the initial course of treatment.

One reason physicians dismiss serious fluoroquinolone ADRs is their
relative rarity. The package insert for Cipro (ciprofloxacin,
Bayer), for example, notes that treatment was discontinued due to
adverse events in 1.0% of patients in clinical trials. Medically
important events were reported in less than 1% of Cipro patients.

"If the ADR rate is 1% or less, it is entirely possible that a
prescriber would never see an adverse fluoroquinolone event in an
entire career," noted Daniel Albrant, president of consulting firm
Pharmacy Dynamics.

Cohen's numbers are significantly higher because he looked at the
minority population that suffered one or more ADRs from
fluoroquinolone use. It's a minority with a few high-profile
members.

One of the best-known cases is that of Philadelphia writer Diane
Ayres. She took a single Floxin tablet in 1992 for a minor urinary
tract infection and landed in an emergency room with delirium six
hours later. The antibiotic triggered persistent manic-depressive
disease that requires regular drug therapy.

Ayres' husband Stephen Fried called her condition "friendly fire in
the war on disease" in his award-winning 1998 book Bitter Pill:
Inside the Hazardous World of Legal Drugs. The book sparked
Congressional hearings on fluoroquinolone ADRs, but the only result
was minor wording changes on package inserts.

Reaction to Cohen's call for a black box warning is varied. Cipro
maker Bayer did not return telephone calls. A spokeswoman for Ortho-
McNeil, maker of Levaquin (levofloxacin) and Floxin (ofloxacin),
said the company had no comment.

At the other end of the spectrum, some patients said a black box
warning is not enough. Helen Gordon suffered multiple tendon
injuries following Levaquin treatment for a mild infection in 1997.
Gordon and other patients with significant fluoroquinolone reactions
are lobbying the FDA and Congress for a "Dear Doctor" letter to warn
prescribers of potential ADRs.

"I have been on crutches for six years because of fluoroquinolones,"
Gordon said. "Countries in Europe and other parts of the world have
issued Dear Doctor letters and medical bulletins to get the warning
out. There has not been a single Dear Doctor letter in the United
States. When we go to the FDA, they just reply with the same generic
letter saying they are looking at the issue, and nothing happens."

Gordon and fellow patient Vince Mulé took their campaign to Capitol
Hill in February. Mulé has intractable peripheral pain, tendon
damage, and a pacemaker to control cardiac arrhythmias linked to
fluoroquinolone therapy.

"They were requesting that we ask the FDA to direct a Dear Doctor
letter to highlight the side effects of these drugs," said a
spokesman for Rep. Rush Holt (D, N.J.). "We could well end up
talking with FDA."

Pharmacists are in the middle. Albrant said fluoroquinolones could
be extremely useful in treating community-acquired pneumonia and
other serious infections but should be prescribed with greater
caution. "It is a good thing to raise the issue," he said. "Whether
it is serious enough to warrant a black box, I'm not sure, but these
things are not candy. The information needs to get into drug
databases where pharmacists and prescribers look."

Some fluoroquinolone ADRs are commonly acknowledged, Albrant said,
including CNS disruption, tendon problems, superinfections, and
significant diarrhea. Peripheral nervous system problems are less
well known and not always recognized as ADRs. "Peripheral neuropathy
in a patient with diabetes is likely to be overlooked as an ADR," he
noted. There is real merit in drawing attention to these adverse
events."

Fred Gebhart


Fred Gebhart. Calls mount for black box warning on fluoroquinolones.
Drug Topics Apr. 5, 2004;148:43.

Copyright © 2004 and published by Advanstar Medical Economics
Healthcare Communications at Montvale, NJ 07645-1742. All rights
reserved.




19442 From: iwannabelikeironmike <iwannabelikeironmike@y...>
Date: Sat Jul 10, 2004 5:31pm
Subject: Floxed? Not sure, anyone else have these side effects?

Hi, I was recently put on 10 days of Cipro for prostatitis. During
the 10 days I didn't feel any side effects but after I stopped I
started getting random pains all over my body as well as severe lower
and middle back pain. For a couple of hours I would feel fine and
then all of a sudden I will get a stabbing sensation somewhere (ribs,
butt, legs, knees, foot, arms, etc...) it changes every time. I also
have had constant back pain although I believe the back pain is
starting to go away. In addition I will get throbbing pain in my
bones (also switches to different parts of my body). I have realized
that these side effects are usually worse in the afternoon. I didn't
realize that these side effects could be caused by the meds. So a
week later when my prostatitis came back the doc gave me 2 weeks of
Levaquin. Well, I took the first pill and then decided to research
the med online and was shocked with all the horror stories. I
realized that my problems were probably caused by the Cipro. It's
been 3 days since I took that 1 Levaquin pill (i refused to take
anymore) and about 2 weeks since I stopped the Cipro. My random pain
and soreness isn't going away. Has anyone else had symptoms like
these? If so do they ever go away? Is there anything I can do? The
only thing that seems to help is warm baths, but the pain usually
comes back after I get out of the water. I have been taking anti-
inflammatory (motrin) for my back which seems to help a little and I
told the doctor I want a different med for the prostate problem so he
put me on Keflex. Anyone ever used that? The only other thing that I
have is pretty bad anxiety/stress (even before taking the cipro) and
I know that anxiety/stress can also cause muscle pain. Any help or
responses from anyone would be greatly appreciated.
Thanks!

19444 From: shelley <blondeambitionz@y...>
Date: Sat Jul 10, 2004 5:55pm
Subject: Re: Floxed? Not sure, anyone else have these side effects?

A lot of people haven't felt any side effects until after the course
was finished. I am not shocked that you are now having side effects.
Cipro is what damaged me as well. I had more neurological problems
than physical. It does sound to me like you have been floxed. I was
floxed this past Feb, and I had a lot of pain in my lower legs. I
also would have burning pain on my thighs and arms. The pain
symptoms have gone away for the most part, but I am still left with
mild tremor in my hands. I do not have the strength I had before.
You will get better, it just takes time. I thought I would wake up
one morning and everything would be back to the way it was, but it
wasnt. I also suffered from mild anxiety before the Cipro, however I
am now taking a daily dose of Zoloft to keep the depression under
control. The incident is slowly losing its horror in my mind..but I
will never forget what I went through. You never will either, but
you will get better. It just takes time...and everyone's time is
different - some faster than others. Has your Dr been able to
provide you an explanation for your pain? Do not be surprised if he
refuses to believe that the quninolones did this to you.

19445 From: <kings1978@y...>
Date: Sat Jul 10, 2004 5:58pm
Subject: Re: Another UTI please someone help

Makes sense but the unpredictability makes the focusing on the
downside of guessing wrong irresistable. We're not talking about "Boy
did that medication give me a bellyache!" Or "The rash those pills
gave me tok 3 whole days to go away!" We're talking, or at least
*I'M* talking about life-altering , debilitating effects that last
forever.

And , it's on thing to contemplate possible bad reactions if one is
healthy going into it. But it's quite another problem when you
ALREADY have been neurologcally affected. yes, the Macrobids et al
might pass through totally without ill effect...but as I am
already known to be sensitive to neurological reaction and in a
current state of, shall we say "neurological degradation" perhaps
the MAcrobids et al would be a slam dunk to affect me.

Also, If you read the ADR list of those drugs optic nueritis causing
blindness is not dose dependant. It can occur after one dose! And
it's not necessarily reversable. Do I want to go blind if I don't
have to just to treat an infection that can be treated with
something else?

If I were healthy I;d take the pill and be confident. But then I
KNEW of the POSSIBILITIES of FQs before I took them too. I
contemplated ruptured tendons and all that. But I didnt know I would
be affected forever

I dotn want to scare anybody with this or make our lives more
fearful than they perhaps already are, but I cannot feel
comfortable assuming anything. or at least assuming anything "good"
I have no problem assuming the worst... ;-)

However, I feel better the past couple days reading that there are
people who have had FQ's and then Nitrofurantoins with no bizzare
affects


19446 From: iwannabelikeironmike <iwannabelikeironmike@y...>
Date: Sat Jul 10, 2004 6:03pm
Subject: Re: Floxed? Not sure, anyone else have these side effects?


Hi, thanks for your response. Well last time I saw the Doc I didn't
even think that the Cipro was causing this and he basically said he
didn't know what my problems were coming from and that it might be
from stress (thats what they all say when they don't know). I haven't
been able to meet with him again because he's on vacation. Has anyone
ever tried Acupuncture for the muscle pain?


19447 From: Taunda Nestor <taundaleah@m...>
Date: Sat Jul 10, 2004 6:12pm
Subject: RE: Floxed? Not sure, anyone else have these side effects?

You are describing exactly what I happened to me right down the the pain
moving.

It's been about three months and it comes and goes, but I do think I'm
getting better.

Be sure to watch your diet, watch out for chicken, caffine etc. as they seem
to increase my symptoms. Go to fqvictims.org for more info.


Good Luck!!


19452 From: Taunda Nestor <taundaleah@m...>
Date: Sun Jul 11, 2004 0:09am
Subject: RE: Re: Floxed? Not sure, anyone else have these side effects?

I'm was floxed on April 22-27, I spent the first few weeks almost bedridden,
muscle jumping and cramping, this strange electrical sensation going down my
arms and plain miserable. After about a month and a half I was out of bed
all day but still pretty sore. I still have soreness but it's not quite as
bad. Still have muscle twitches but not as hard.

Biofreeze is a rub on gel that you can buy from physical therapists,
chiropractors or orthopedic doc's. I had it on hand because hubby's a
runner. It worked wonders for the pain. I also find that heat helps, I
put those stick on heat pads that last 8 hours on my muscles when they start
burning and it seems to help them calm down.

You might also find that you have an anxiety problem now also, it hit me for
the first month or so, still a little high strung but it's getting better.

Good luck, feel free to write with any questions, hang in there!!

Taunda
19455 From: k_desalvo <k_desalvo@y...>
Date: Sun Jul 11, 2004 9:05am
Subject: Question

I am curious about something.
How long did it take before you started developing symptoms? I had
swelling and rash immediatly, neuropathy 3 months later. My Dr thinks
its been to long for a reaction.

The back of my left knee seems to be tight and hard to bend. Feels
like its swollen but its not. Could this be the tendonitis?

How does tendon rupture come from this? Muscle loss, weakness?

What types of nerve pain relief meds given? I was given Nortriptylne
and vicadon.

Thanks


19456 From: cjt2202 <cjt2202@y...>
Date: Sun Jul 11, 2004 11:56am
Subject: Re: Question

Weird feelings - 4hours, back of rt knee swelling - 16hours, total
meltdown- 24 hours.
Your doctor is wrong, let him try some!
Don't know what causes swelling, etc.
Haven't had pain, or pain meds.
cjt

19457 From: chiggins1066 <chiggins1066@y...>
Date: Sun Jul 11, 2004 3:14pm
Subject: Re: Question

Here is the timeline for me

Day 11 of Avelox: developed lower leg pain in shins and cavles.
Day 12 of Avelox: developed intense wrist pain (tendons) -like someone hit me with a baseball bat in my right wrist. Hand turned completely white for about an hour.
Day 13 of Avelox: developed intense paresthesias in hands along with burning.

Quit the mediction

Day 15: devloped redness and swelling in the hands.
Day 21: allergic vasculitis beginning to appear in palms.
Day 22: intense pain in achilles tendons.

by one month, most leg pain gone, but some still remains

Day 40: Paresthesias develop in both feet. Tingling, buzzing, etc.
Day 60: Redness in palms begins to fade. Allergic vasculitis also improves.
Day 65: skin crawling sensation in shoulders.
Day 85: Symptoms begin to "cycle." One week of feeling pretty good (very little tingling and buzzing -less pain), followed by a bad week.
Day 100: Marked improvement in hands and feet, although still some numbness at night, and occasional wrist pain. Soles of feet still sore.
Day 110: Seems like I'm turning the corner. Some muscle twitching and tingling in the feet, but much less than before. Hands feel excllent during the day, and have returned to their normal color.

So the answer is YES. Symptoms appear weeks to months after exposure. This is true of a lot of the people on the forum.

My theory behind this (and I'm not a doctor), is that the quinolones set off an idiopathic form of serum sickness. Serum sickness is a condition in which the immune system binds with an element within the antibiotic to form "immune complexes" which then mistake healthy tissue for an invader. It is like getting temporary Lupus. Serum sickness has been seen in Cipro patients, and one of the complications is neuritis (which I have in my elbows and feet).

One treatment option is Prednisone, but this medication will not reverse damage already done. It will only stave off the immune complex temporarily. The minute you go off the Prednisone, the complexes will then attack tissue with a vengeance, making up for lost time. This is why many Floxies get worse from corticosteroids.

Another theory is that quinolones cause small vessle vasculitis -this may or may not be related to the autoimmune issues.

Your doctor is on the right track, but she doesn't understand the fundamental problem.

Prednisone got rid of my rash temporarily. It came back the minute I stopped taking it. The medication also caused all sort of strange skin manifestations which looked like basal cell carcinomas. I had acne all over the face, and I felt like hell. It's not worth it.

Try Benadryl for the rash. Start doing nerve glides and get into physical therapy.


19458 From: <snapdragon928@w...>
Date: Sun Jul 11, 2004 1:08pm
Subject: Re: Digest Number 1598

fellow floxed persons has mentioned this is part of the calming influence at
work I our brains, so if that's where the damage is done, it makes sense that
they work just not for the reasons the docs what to say. My DR insisted I was
still depressed and suffering from anxiety even though I was denying any such
symptoms. He said your on three meds for anxiety so see obviously your still
anxious. Duh! The meds aren't working, so maybe I'm not anxious? I don't know
it's complicated. The meds worked for 6 moths very well and now they don't .



LEVAQUIN

FDA should take harder line on drug

In October 2003, the FDA approved a new 5-day dosage form of Levaquin
(levofloxacin, from the fluoroquinolone family, which also brings us
Cipro, Tequin, Floxin, etc.). Levaquin is prescribed for a variety of
infections such as pneumonia, UTIs, sinusitis, prostatitis and others.
However, the ingestion of this drug is often analogous to using a
sidewinder missile against an anthill.

I'm one of thousands of levaquin's adverse drug reaction (ADR) victims.
I was "floxed" in 1991 for a pneumonia issue and remained sick from the
drug for months. Along with the overarching malaise, I suffered from
hepatic toxicity, severe tendonitis in my right forearm, and peripheral
neuropathy. These effects continue to recycle occasionally — just
recently, in fact, except the tendonitis now appears in both arms and
the neuropathy often feels like wasps' stings. I further developed
cataracts that I believe are resultant from levaquin.

Other victims aren't so lucky. They end up severely disabled with
ruptured Achilles tendons and a host of other devastating physical and
mental disorders, even fatality, as the drug impacts multiple bodily
systems, baffling physicians. An unusual aspect to these ADRs is that
they often persist for months and years. There is no known effective
treatment from the allopathic establishment. To avoid lawsuits,
physicians often won't acknowledge and report these ADRs as stemming
from levaquin ingestion.

The FDA, for 40 years, has neglected to recognize the significant
adverse effects caused by fluoroquinolones, despite ample evidence that
extremely serious ADRs are real. It has allowed these drugs to be
marketed to physicians as a safe antibiotic with minimum side effects.
Potential patients should research this drug thoroughly, and then some.
And, the FDA should ban this family of drugs before more lives are
ruined.

MICHAEL ARVEY, Boulder

19461 From: flwrlady2002 <flwrlady2002@y...>
Date: Sun Jul 11, 2004 10:08pm
Subject: Still Having Problems 2 yrs. later


Hi everyone! I haven't posted here since sometime last year because
things just got so bad for me and are continuing to this day that I
didn't even have the energy to use my computer. In Feb. 2002 I was
floxed by Tequin for a sinus infection. I originally was given
Zithromax and the sinus infection seemed to be going away, but still
wasn't completely gone at the end of the ZPAK course. I used the
Tequin for a few days and started after a few days getting pins and
needles on the tops of my hands and in pelvic area, blue/red
coloration on tops of hands with skin peeling/cracking, heart
problems (which I believe was prolongation of the QT interval) to
the point that I almost passed out 3 times, a coated tongue, chills,
fever 102', vaginal yeast problems, severe anxiety attacks for 1 1/2
months to the point I was scared for my life, etc., etc. After
going back to the NP I got the stuff from she said she wanted to
keep me on the Tequin since I was having so many problems and she
was not sure she wanted to put me on another antibiotic because of
all the reactions I was having. How ignorant in hind site that I
ever listened to her. Why would you put someone back on the same
thing that was causing them to have such bad reactions?

I only took 1 pill and decided to stop, but the problems have
persisted and changed ever since then. I was prescribed by another
PN Ativan which I continue to take to this day (1mg)and try to only
take two if I need it. Because of ongoing symptoms I changed to a
differenct Dr. who does believe it could have been the Tequin. I've
been prescribed everything from Macrobid (PN) and could only take
that 1 day (I swear it made me worse)to every antidepressant you can
think of. I can't even get past 1 antidepressant without something
feeling wierd or making me hurt more. I have to take a Benadryl
almost everyday because of hives and wierd skin reactions (the
little water blistery looking breakouts on the face that others have
talked about)and an Aleve on the days the pain is so bad.

I've had every test imaginable - I also thought I had MS, but I
don't - just feel like you do. I've found out that I do have
Epstein-Barr virus, antibodies to Hepatitis B (which I never even
knew I had Hepatitis B), and recently found out at some point I had
parvo virus, but they couldn't tell me when I acquired it - I could
have gotten it years ago. I've also had so many blood tests done
and nothing else seems to be wrong. My worst problems now are the
anxiety has turned into panic attacks, ear ringing, loud noises seem
to jolt me into a panicky feeling, and lots of skin problems.

Been to the Derm 5 - 6 times - had a skin biopsy because of the face
stuff and my upper thighs seem to get bumpy looking and blue/red at
times - it showed folliculitis. Yeah, well, I never had that before
and then I was told that the breaking out on my face was perioral
dermatitis and is very common (adult acne)never had that before
either. I don't know if I break out from things I'm eating or what,
but it doesn't seem to go away except without using steroid stuff
which I'm trying to stay away from. I have the worst pains in and
across my shoulders and also have the swelling in the back of the
neck. I have some very wierd chemical sensitivities now that keep
me from going out in the sun and smells in stores make me nauseous
and/or dizzy. I had patch testing done, but it revealed nothing -
allergist said it didn't surprise him. I recently had an EGD
because for the past few months anytime I ate I was getting real
bloated and had pains in my upper stomach area right below the
ribs. That tests revealed nothing either.

I just went back to work last week after being off for 2 mos. and I
really don't know if I will be able to continue. I struggle
everyday with something new, cycling, or worsening of existing
problems. I've had the toe pain, curling of toes thing, electric
type current feeling which shoots from one side of my head straight
through to the outher side just as I lay down to sleep (really
strange), but doesn't happen all the time.

I know this is long, but after trying to catch up on posts from last
year I just had to get back on here to let everyone know what's
still continuing for me. I would also like to acknowledge how
deeply saddened I was to hear about Paul Levine - I just wish I
would have kept up better since he seemed to be having some of the
same problems I had/have and missed the opportunity to talk to him.
I understand the feelings though because I've been through the
terrible pains of just being sick of it all, but I try to go on!

Thanks for listening and hope through everyone's efforts these
problems get to the media (on television) soon. I was glad to hear
Tequin was stopped in Europe. I'll try to keep up from now on.

God Bless

19464 From: shelli <golubshelli@y...>
Date: Mon Jul 12, 2004 0:20pm
Subject: Re: Updae

For those of you that are not familiar with Gregg, here's a brief update:
*FQ'd over 18 times in 2 yrs to based on dr's assertion that fibromyalgia is caused by bacterial infections which massive doses of anitibiotics followed by prednisone and priobiotics will help
*reactions (muscle pain, numbness, tingling, redness, burning, vision problems, headaches) continued to worsen - last FQ was in April 2004
*pain dr addicted him to fentanyl and he was detoxed (at his request) (NEEDED HOSPITALIZATION the detox was so bad!) Jan 2004
*pain and all symptoms above continued to worsen - visted dermatologist, allergist, neurologist, primary care, endocrinologist (probably missed a few) - all said it was in his head (pyscho type)
Guess it is - finally a dr did an MRI last wednesday and there is a cyst on Gregg's pituitary about 6mm. Been there at least a YEAR! We see the neurosurgeon this morning.
Moral is DON'T GIVE UP - if you are really suffering, continue to push these doctors until one of them FINALLY really looks and listens!!!
Please pray for us - we are very frightened right now and facing brain surgery of the most delicate type!!!!
Keep you informed.
Shelli


19466 From: jeanhanna212 <jeanhanna212@y...>
Date: Mon Jul 12, 2004 3:03pm
Subject: my head is going to explode!


For the past 6 months I have had periodic headaches and head
pressure. For the past 3 weeks, I have had constant and daily
symptoms. I have a really bad headache on the right side of my head
with extreme head pressure in the back of my head and again mostly on
my right side. It almost feels like my nose is being pushed into my
face. The right side of my face is extremely sensitive to touch.
Also, I have most of my other symptoms like numbness and joint pains
on my right side. Could all this be still due to the quinolones I
took 6 months ago or something more?? I am getting really worried
and parnoid. I don't really have access to MRI's at the moment. The
head pressure is really troubling me. Has anyone had a similar
experience? Is there anything to be done?
19470 From: iwannabelikeironmike <iwannabelikeironmike@y...>
Date: Mon Jul 12, 2004 4:27pm
Subject: Anyone else experience very low body temperature?

I was floxed about 3 weeks ago and notice that the last couple of
days my temp has been around 96 - 96.5. Is this something I should be
worried about. I have also noticed that when I am out of the sun I am
almost always cold, when I'm in the sun (live in california) I get
really hot.


19474 From: jeanhanna212 <jeanhanna212@y...>
Date: Mon Jul 12, 2004 8:32pm
Subject: Re: my head is going to explode!

Well I know that the head pressure I have is really not due to sinus
issues. I never had any sinus problems and my frontal sinuses are
not really affected. I am familiar with all the medications because
I am a clinical pharmacist but nothing seems to relieve my head
pain. I am between jobs now and I won't have medical insurance for
awhile. I don't want to go and spend thousands of dollars on
catscans and MRI's now if this could be related to the quinolones. I
have read people report on head pressure in this forum but I am not
sure if it is the same. My pressure is mostly on my right side. any
ideas?

19479 From: shelli <golubshelli@y...>
Date: Tue Jul 13, 2004 0:07pm
Subject: Re: Re: Update on the update

He was fq'd over 22 times in a two year period, primarily with cipro and vancomycin taken concurrently. Last dose was April, 2004. He finished the 10 day cipro, couldn't handle even two days on the vanco. That's when we found this website. Until then we did not know what the side affects could cause even tho' we had been complaining to dr for many months of the effects he was feeling during and after each treatment. Dr. is WELL regarded in the fibromyalgia treatment community, is referred to in the national FM website and to this date does not believe fq's are causing ANY of Gregg's problems. (We do not see him very much anymore, and will not take any antibiotics but this dr. is primary in Gregg's petition for disability both for ssd and ltd (private) so we need to stay with him. The local primary (we moved from Orlando to Ft Lauderdale) says he does not have the time to deal with Gregg's issues and we have yet to find a local primary that will.

Shelli

19494 From: shelli <golubshelli@y...>
Date: Thu Jul 15, 2004 11:55am
Subject: Re: Re: Update on the update


Gregg was diagnosed with Fibromyalgic at Chapel Hill in NC. It has documented testing and symptoms. After that diagnosis he sought out a physician where he lived that specialized in FM. The doctor is very attentive and kind, but majorly focused on his philosophy (shared by many other physicians) on the supposed bacterial cause of both FM and Chronic Fatigue Syndrome. There are centers nation-wide that treat all their patients the same as Gregg was treated - with antibiotics.

Gregg saw the neurologist yesterday (the third one) and even tho' he has only had nerve conduction tests, he says that they DO show whether there is small nerve damage and that Gregg's results are normal. He can not explain the redness, the burning, the tingling, the electrical pain sensations, the lack of sweating etc. He concurs, however, with the neurosurgeon who indicates these are NOT symptoms of the pituitary tumor - he calls that an "incidental but beneficial finding"! He FINALLY after MUCH talking prescribed Keppra (Gregg has been on Neurontin with no positive effect) and bloodwork for B-12??? Today he has his dynamic MRI and tomorrow we meet with another endocrinologist who we hope will have some answers. At that point we are at the end of the road with no where else to go except to wait and see what will be done about the tumor which it appears, is not the cause of these issues.

Shelli



19500 From: <snapdragon928@w...>
Date: Thu Jul 15, 2004 8:24pm
Subject: Re: Digest Number 1601

I wrote a letter to the president when this issue went around last time. I
have noticed a number of those who have been floxed also carry a diagnoses of
fibromyalgia, cfs,Lyme disease, epstien barr infection and the like. Is it he
flox symptoms or the syndromes that come first? Do these underlying problems
make us more susceptible to the effect of fluoroquiolones? Or does an underlying
factor that makes us more susceptible to these syndromes make us also
susceptible to the Quinolones? Where are the doctors who were floxed? these are
interesting findings to me, If there is actually a higher number of floxed victims
in this group.

19501 From: <snapdragon928@w...>
Date: Thu Jul 15, 2004 8:45pm
Subject: Re: Digest Number 1602

Although its better now, Yes, I was either hot or cold, not in between.mor
bothersome is not being able to walk through a grocery store or church or any
public place without having trouble walking, trouble talking trouble not
shouting thugs out that are at most inappropriate at least not directed at anyone
and embarressing. I have to use a cane sometimes ad other times I back to normal
me. And the daily headaches. I am going to Ann Arbor to the University of MI
on Tuesday see what they can do for me, wish me luck

19504 From: <md29again@a...>
Date: Fri Jul 16, 2004 0:07am
Subject: Re: Re: Anyone else experience very low body temperature?

19535 From: <mitrerom@c...>
Date: Mon Jul 19, 2004 5:19pm
Subject: Re: Strange Reaction to bite

Hi Taunda,

Like you Ive had some odd reactions to bites. I live not too far from a rive and subsequently get bitten a quite a lot during these summer months. Mostly a normal bite would have me itching a little anda small red lump but since Ive been floxed these bites can be huge. Mostly they just end up big, big red spots but one (it must have been the mosquito from the dawn of time) bit me on the ankle and for the first few days my ankle locked. I couldn't move my foot up or down etc because of the amount of swelling. Then after that my whole leg up to my knee became so swollen I could hardly get trousers on!

It took about a week for it to reach its worst and then took about another 3 weeks to return to normal, tho its still not normal, still itches and my skin aroudn my ankle is kind of dry and flaky but I guess it'll heal totally eventually. Talk about a abonormal response from my immune system.!!!! its a little bit scary really. I just hope I don't get stung by a bee or wasp.

Mark (probably the only UK person here)
19554 From: <WAlakhdar@a...>
Date: Tue Jul 20, 2004 8:46pm
Subject: Re: leg pain at~ 10 mos

I have had the same under the knee cap pain, inside and outside of leg, and calf cramps. However, when my doctor put me on Magnesium shots, accompanied by large daily doses of chewable magnesium, the calf cramps and twitches went away like maagic. I still believe that after floxing our magnesium is severely depleted.

For the oral chewables, I order from Shaklee, very high quality vitamins.
Hope that helps.

Mary in CT



19557 From: virgotw95 <virgotw95@y...>
Date: Wed Jul 21, 2004 3:04am
Subject: My story of Cipro + Ampicillin


Hey guys,
I just wanted to share my story with you all because it is
comforting to know that someone listens and responds. Well I got
floxed in Sept 2003 with Cipro for a UTI (I was 21). Cipro gave me
neurological problems only. I had tremors, dizziness, anxiety,
depression, and I felt tired all the time. Everything started getting
better about 7 months afterwards. However, I still have sleeping
problems. My body used to be on this internal clock where i would
feel sleepy at a certain and I would awake at the same time every
morning. However, now this clock has gotten really messed up. I fall
asleep at random times, I never really even feel sleepy. One night I
stayed up the whole night, and the next day i still couldnt sleep even
though I tried to nap in the afternoon. I just felt dizzy all day.
Also in the morning I can't tell what time it is. Usually you can
wake up and you can feel if its 6 am or 10 am, but my body really
doesnt know the difference anymore. I had a UTI again about 2 weeks
ago. I was scared to take any antibiotics at all, but I took
ampicillin as I know it has been around for a while, and although i
didnt want to take any antibiotics because Cipro has made me fear all
of them, I didnt want to risk getting a kidney infection. I took it
for only 3 days. Then a week later I had some coffee. It made me
shaky again and I am getting anxiety problems again every morning. I
hope the ampicillin does not cause problems for another year. It was
disappointing to have to go through 10 months with the Cipro already.
I just wanted some opinions on whether anyone has taken ampicillin
and how dangerous of an antibiotic it is. Any comments/suggestions
would be highly appreciated. Thanks so much for your help.
Sincerely,
Tamara


19564 From: Debra Morse <debm@c...>
Date: Wed Jul 21, 2004 10:28pm
Subject: RE: Senator Blanche Lincoln's office responded!


Well, believe it or not, Senator Blanche Lincoln's office not only responded,
but they told me that if I had anything I ever wanted to add, that I should
feel free to contact them! When I read the email yesterday concerning the drug
trial in France using pediatric patients, I immediately wrote Senator Lincoln's
office again and said: "you said that if I had anything to add that I should
feel free to do so and I certainly do have something to add. I just got an
email about a drug trial in France using quinolones on children and I want to
"cut and paste" the article into my message to you!" (which I did) I also told
her that with the studies already done in this country on juvenile animals,
the drug companies already knew more than enough about how these drugs could
effect kids and with this study to bolster that knowledge, it is unconscionable
for companies like Johnson and Johnson to be conducting their own studies on
innocent kids!

Again, I really didn't think I would get a response from her office but I did!
I am "cutting and pasting" it below for all to read. SOMEBODY out there IS
listening!!! Whether she gets any further with the FDA, etc. than we have waits
to be seen but it's sooo nice to know that someone in Washington is actually
trying! AND, I'm so glad to see that she took my suggestion to have the CRS
do the research (after all, that's their function darn it!) instead of just
turning it over to the FDA because we all know just how far anything goes with
THEM. BTW, "Anna" handles Senator Lincoln's official correspondence.

Debra

19569 From: dsinouye <yanase@a...>
Date: Thu Jul 22, 2004 10:38am
Subject: Another Quinolone Casualty (!!)

Hi,
I found this group by searching about quinolones and
tendonitis/ruptured tendons.
I finished 5 days of cipro 250 mg 2x a day tuesday. Monday I could
hardly walk my tendons in one foot are swollen (inside of arch) red
and sharply throbbing. Ice is helping. My doctor called in an Rx for
another 7 days of it at 500 mg 2x a day there is no way I am taking
another quinolone ever.

I had a reaction to Levoquin IV in January - ten days of it for a
serious infection. Then they switched me to vancomycin. It took many
months to recover from that and my tendons hurt then and I was
restricted in movement/function. My doctor seemed to understand it
was the drug causing this reaction. But this last time with another
infection his office staff insisted Cipro was what he ordered and the
best and would be ok even though I had the reaction to Levoquin - and
refused to ask my doctor about another medicine. Needless to say I am
pretty ticked off.

I am up in the middle of the night tonight with tendon pain all over
my body that is transient, except in that one on the inside arch -
that's been pretty constant. Knees, ankles, elbows, shoulders, lower
back, wrists. I felt hot like I couldn't get enough air and had to
get up and decided to search for something I could do until morning
when I can call my doctor's office. Ice is working good off and on
the worse places. I usually take ibuprofin for severe fibromyalgia,
so I continued that. Drinking LOTS of water - 4+ 32 oz water bottles
each day of taking this stuff and more the day after and tonight.
I'm also swollen and have edema, my head and eyes ache, I can't read
small print, jaw aches. I feel hot and cold at the same time.

The half life of this says 4-6 hours and it's been about 40 hours
since the last dose I had I'm wondering why isn't it out of my system
by now like the enclosure says it should be? Or is this misleading?

I'm sorry to see so many others have had similar and worse problems.
I hope someone will have some suggestions of what to ask and what
might help get through this and minimize damage. With other medical
problems I deal with I've come to know that shared experience is quite
valuable.

One thing I will do is take a big red marking pen with me to the
doctor and write on my chart NO QUINOLONES!!! so they'll get it. I am
mad, no doubt about it, but want to focus on what can I do to deal
with it the best possible.

Thanks for having this group,
Dorothy
nothern california


Thanks for the info. I take it that reference didn't break things
down by severity? I don't know about you (pl), but I can't recall
ever taking a prescription drug that *didn't* cause some kind of
minor adverse reaction such as mild anxiety, dry mouth, upset
stomach, or the like. When talking about prescription drugs I think
a long list of potential ADRs is par for the course :-( It is the
non-minor ones that cause the most concern, thus my curiosity.

I've been digging at pubmed for awhile, and so far I've only found
two abstracts that provide details re ADRs and their severity. FWIW,
here they are:

Safety of oral ciprofloxacin. An update based on clinical trial
results (abstract)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=retrieve&db=pubmed&list_uids=2686432&dopt=Abstract

Describes a database that was created through 1988, of 9,473 well
documented treatment courses world wide. There were 9466 patients.
Patient age ranged from < 1 year to 99 years. Mean was 50.6. More
than 38 percent were older than 60 years. Total incidence of side
effects for patients: 9.3% (94% mild to moderate, 6% severe).
Treatment discontinued due to side effects in 1.5% of patients
(mostly due to gastrointestinal reactions). Based on the 9,473
courses, the incidence of severe reactions was 0.6 percent.


Adverse drug reaction monitoring of ciprofloxacin in pediatric
practice (abstract)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=retrieve&db=pubmed&list_uids=1592498&dopt=Abstract

1990 survey of paediatricians in India. 147 doctors prescribed cipro
for 3341 patients under 18 years old. 159 ADRS reported in 104
patients (3.1%). Of 159 ADRs, 8 (5%) were severe, 76 (47.8%) were
moderate and 75 (47.2%) were mild. Therapy needed discontinuation in
9 (0.3%) patients. Note: by my calculations, the incidence of ADRs
was: 0.2% severe, 2.3% moderate, 2.2% mild.


19583 From: soniaandsam01 <soniaandsam01@y...>
Date: Fri Jul 23, 2004 6:04pm
Subject: hello from england - had quin' o/d

i have posted here before once when i found this place but cant find
message and wanted to ask for some help.

i dont suppose anyone has any information on interactions between
quinolones? i was prescribed cipro and oflox together and two weeks
later was completely frozen up. that was last october, im still
suffering pain and swelling in knees in particular. im attempting to
sue docs but need as much information as possible on this and am
begging for your help... so anything that you can think of that
would add weight to my case or even better help me recover i will
love you forever. by the looks of things also its looking hopeless
that the fda (dont know what uk equivalent is?) will sit up and take
notice and i would not know where to start in getting attention over
here, but this is obviously a huge silent problem. so many of you
seem to have been dibalitated by this.

thanks for reading. sonia

19591 From: build_it95 <build_it95@y...>
Date: Sat Jul 24, 2004 11:08pm
Subject: Hyperglycemia

Has anyone been diagnosed with hyperglycemia, or with glucose
intolerance? Also, I've been prescribed Metformin to regulate glucose
( only when it's above certain limits), and I'm trying to find out if
anyone else has tried it. Wondering about side effects? Andy.

19598 From: Honey Moon <snapdragon928@w...>
Date: Sun Jul 25, 2004 5:54am
Subject: Ann arbor visit


I went to the U of M hospital and I was disapointed . The doc did not
think that these problems I am having were caused by the avelox and
suggested stress as a reason. She didn't want to look at my papers of
things I had copied from the computer or anything. I have found a
case of tourettes caused by quinolones, Unfortunatly I couldnt find
the paper.Also heard from a nurse at work ,she is aware of another
case of a girl taking antibiotics and that she developed tic syndrome
from it as well.Doc said that the leading meds were haldol and
risperdol. If you thought quinolones were bad, try haldol. I told her
no way.It was not good I cried which only led her to go down the path
of stress. Its the tics and reactions to the quins that were
stressing me out.She took my papers to read and scheduled me for an
eeg and speech therapy(my speech is almost allways screwed up now, I
talk funny all the time,dont make sense sometimes) To top it all off
my boss said the other day they may not be able to keep me in my
position anymore due to the fact I can't do my duties,I can
understand but we're talking aboutlosing myjob here or going down to
the bottom level again and doing thirds & cut of five dollars!Help
what do I do with all these circumstaces?Oh , Vonnie ,what do I
do,the letters to the papers and about the hospitals and the Children
trials. Also can any of this be done without a printer & just by
email? I havent got a printer. I need info on contacting the local
government in MI. I dont know what to do. All this is important
stuff, but I need to still have a place to vent and ask questions and
bring up issues to discuss like why some of us are floxed and others
dont have a reaction at all. How do we get researchers on this??



19601 From: <yanase@a...>
Date: Sun Jul 25, 2004 0:16pm
Subject: Re: Re: Serious adverse reaction rates (?)

My doctor dug up some information about quinolones contraindicated in people
with Rheumatoid Arthritis - it seems to set off a series of autoimmune
reactions that make it worse. There was also an article about it's use in
patients with autoimmune illness and that group having a higher rate of
incidence of serious reactions. His office is going to make copies for me
and I'll see about getting them posted.
I'm really curious about the genetic possibility of this; as I've read many
personal stories that reference more than one family member that have
serious problems with these... my mother, grandfather and I all had serious
problems with these (and all have fibromyalgia, osteoarthritis, RA, etc.)
I wonder maybe the tests they have for things like RA aren't getting it
early enough - while it goes undetected it may still be a high risk factor
with quinolones?
There has also been a great deal of research on other drugs, especially
chemo drugs, that delve into the genetics issue - so far it's interesting
what's being found. This could also be a factor thus far unknown? It
would be a very good thing to get to the answers.
-Dorothy

19602 From: <yanase@a...>
Date: Sun Jul 25, 2004 0:39pm
Subject: Re: Re: Another Quinolone Casualty-plodding through


By Thursday afternoon I could hardly walk and could not straighten out my
left arm. There were lumps in tendons. They got me in to see my doctor who
looked over the lumps and thought they are something called "ganglia"(?)
He called poison control! Then my insurance company to see about a
magnesium iv at the hospital next door (the only fast way he had of
providing it for me) but without a test saying I'm deficient it's not
covered at the hospital. Argh. I printed out and gave him all the articles
from this site and the other (thank you!).
What ended up is a shot of 80 mg cortisone, with the opening to come in for
another the next day if needed for another. Within two hours I was able to
open and close my arm (bend elbow) and walk almost normally. I worked
Friday and was tired but ok until three hours after I got home and it hit
hard again and was a rough night of sweating, my arms and legs feeling like
numb, tingling 4th of july sparklers, skin flushed, hot but freezing inside,
tetany, ringing ears, eyes and head pressure - misearble. Saturday this
stuff continued so we called the doctor and talked over what was going on.
The advice is oral prednisone, ibuprofin, mirapex, mestinon and valium. I
tried it all but the valium and my nerves felt like jagged glass/rattling
chains - then 10 mg valium changed that and I felt relaxed inside. The
mirapex improved the neuropathy significantly and continues to. The
anti-inflammatories seem to be doing a good job so far I don't notice
anything new from taking th