May 2004 Post Marketing Report

18684 From: blackbeltdaddy <blackbeltdaddy@y...>
Date: Sat May 1, 2004 2:46am
Subject: I had an adr from avelox/ can anyone help?

My second dose of avelox I woke up in the middle of the night with
the left side of my body numb and a burning in my stomach and chest.
I had my wife call 911. The paramedics said my vitals were ok, so I
chose not to go to the E-room. I could not sleep the rest the night
and actually had thoughts that I was going crazy. Since then I have
had almost all the symptons I have read on this forum. Mostly with
CNS problems. After two trips to the ER, several trips to my doctors,
several blood test, my doctor came to the conclusion that I was
suffering from depression. I refused to take meds. for this I really
dont like taking meds. if I can avoid it. So I decided to take ST.
JOHNS WORT and I must say it has done wonders for the severe anxiety
and depression.Im still having problems with tremors, weakness, and
fatigue. Before this happened I was a healthy 34 year old male. Now
its all I can do to get through the day. Its been almost two months
now and Im getting sick of feeling this way. Alot of what Ive been
reading has been old, is there anything out there that helps make you
better, faster? Also my doctor told me it wasnt a reaction when I
called the next day and to keep taking the avelox, I refused, thank
God.


18686 From: Justin <jjmg@a...>
Date: Sat May 1, 2004 4:36pm
Subject: Re: Possible New Symptoms

I call mine "head pressure" more than a headache. Sometimes it feels
a bit more like a dull headache, but most of the time it's just an
uncomfortable feeling, centered in the back of my head at the base of
the skull/top of the spine, although it can kind of spread all over.
When it is at its worst, my teeth actually start to feel a little odd
(especially my upper teeth, roof of the mouth). The best way I can
describe it is to say that "it feels like my gums are on too tight."
The head-pressure can last for weeks at a time. It comes and goes.
I am just now at the 9-month mark, post-flox.
- Justin


18687 From: Angel_8384 <lparker30@c...>
Date: Sat May 1, 2004 8:13pm
Subject: Re: Possible New Symptoms
yeah I get that too... I'd really like a head ache more soo than
head pressure head pressure is really not a great feeling..=/



18691 From: mls0618 <mls0618@y...>
Date: Sat May 1, 2004 9:30pm
Subject: Re: Regular Live Chats

I am new to this web site. I have had many adverse reactions to cipro
and really need some help finding doctors in the Philadelphia area. I
would appreciate any help. Thanks, madeline


18693 From: Emajoe Abeln <emajoe_abeln@m...>
Date: Sat May 1, 2004 10:18pm
Subject: RE: I had an adr from avelox/ can anyone help?

I have had CNS symtoms as well, and I've been taking neurontin as perscribed
by my Dr and it has really helped. I know you don't like taking things but
with this I wouldn't have been able to work.
18700 From: ljjeff_2000 <ljjeff_2000@y...>
Date: Sun May 2, 2004 5:01pm
Subject: Nightmare with Tequin
Hi,
I started taking Tequin last Tuesday when I was given samples of
them for a broncial cold to be taken for seven days. By Thursday
night, I could not sleep, felt like something was stuck in my
throat, and had extreme, almost psychotic nightmares and itching.
Friday I went to work. I had tinninitus, vertigo, nausea,
confusion, memory problems, weakness, and on and on. When I called
my doctor they said it could just be the illness, bronchitus, they
were treating. I knew better. They did not tell me to stop taking
the mediction and as panicked as I was, they were calm and
unconcerned.
Saturday morning I woke and my eyes were swollen shut and all the
same symptoms continued. Called the hospital and the nurse said it
was not an allergic reaction unless I was having trouble breathing,
which was about the only thing not happening. My husband noted my
confusion. Called the pharmasist and he said about the same thing.
Sunday things were no better and I debated going the the ER. Called
my insurance and spoke with the nurse. By this time I had been
online and found out what a danger this drug could be. The
insurance nurse was the first to seem concerned and told me I should
call my doctor and in the meantime stay in a comfortable position
and not move around too much due to the vertigo. Called my doctor
and he was completely nonchalant about what was happening to me and
said I'd just have to ride it out for about 5 days from the last
time I took it, which was Friday. So...I guess by Wednesday I'm
supposed to be better. This is a nightmare!!
On top of this, I have a history of Steven Johnson's Syndrome and
the doctor's office also sent me off with a sample of Advair
inhaler, which I have since learned is contraindicated with Tequin.
I had not instructins not to drive or warnings that it might cause
dizziness, which would have been the least of my worries. I am
concerned about trying to work like this for the next three days,
yet equally concerned about missing that much time from work. I am
a counselor and Friday, when this all started had to dismiss a
client because the vertigo was so bad I was concentrating on not
falling out of my chair.
Have others experienced this nightmare, and what have you done about
it. I will be changing doctors, but I don't want anyone else to
experience this nightmare. It has been miserable and I hope there
are no long term effects. Please help me with any info. I'm not a
big believer in law suits, but I think there has been some
significant negligence. Opinions.... I'd appreciate any input.
LJJ

18703 From: annebeardsley <annebeard@a...>
Date: Sun May 2, 2004 8:18pm
Subject: Achilles tendon pain - when will it get better?

Hello,
I would like to hear from any of you who have developed achilles
tendon problems after taking quinolones.
I was treated with levofloxacin for pneumonia while in the hospital
in India. I stayed on the medication for a total of two weeks. It's
been one month since my symptoms began and I'm still waiting/hoping
to see any improvement. In addition to pain, especially when walking,
my feet and legs are very swollen. Getting up and down stairs require
real courage.
According to my doctor here at home, there is no treatment/therapy to
ease the symptoms (other than ibuprofin, which don't help much) and
it's unpredictable how long they will last. He also tells me that
there's no risk of tendon rupture at this point, that would have
happened already if it were to be. Is this all true, I wonder?
Please be in touch if you have any information to share about the
condition, treatment, timeframe, etc. Positive news would be such a
blessing!
Thanks,
Anne


18704 From: chiggins1066 <chiggins1066@y...>
Date: Sun May 2, 2004 9:49pm
Subject: Re: Achilles tendon pain - when will it get better?
Hi Anne,
I initially developed Achilles tendon pain (along with lower leg
pain in general) when I was on Avelox (I was on Levaquin before
that). When I stopped taking the drug, the symptoms vanished, only
to come back again 2 weeks later. I now have intermittant pain in
my lower legs and wrists, along with full-blown carpal-tunnel
syndrome. Just like you, this has been going on for over a month.
I read somewhere that Achilles tendonopathy (possibly leading to
ruptures) can happen between 2 and 60 days after taking the
medication.
A couple things I've found that help are
1. Icing the affected area
2. gentle massage
3. Ibuprofin
4. Avoid uncomfortable leather shoes
5. Avoid hot baths and showers (causes swelling)
Diet doesn't really matter for me. The pain comes and goes.
Sometimes it feels like I just ran a marathon, but other times I
feel fine.


18705 From: build_it95 <build_it95@y...>
Date: Sun May 2, 2004 10:23pm
Subject: Re: Achilles tendon pain - when will it get better?
Hi Anne,
I'm going for MRI of both Achilles tendons this thursday. My
biggest problem has been left knee, but my heels started really bad
about two moths ago. I had very little problem with heels before the
major problems hit, this didn't come until my seventh month post
Levaquin+Prednisone+Albuterol+Motrin800. I wish I had positve news
for you but none so far here, I'm on my ninth month. Andy.


18707 From: librarian1234567890 <owoodward@h...>
Date: Mon May 3, 2004 2:07am
Subject: Re: Achilles tendon pain - when will it get better?


Anne - tendon ruptures have been reported as long as 6 months after
treatment. One of the subjects of the Casparian article (can't
remember offhand where to find it)had a rupture at 6 months I think,
and then several years later ruptured the other one. In the words of
my PT, about achilles ruptures in the healthy population: "it
happens...but it is a freak thing" and he went on to say that to
rupture one and then the other, there is definitely something gone
wrong. He was telling me about a patient of his that this also
happened to (one rupture, then the other several years later) - he
didn't share the name of the patient (confidentiality).
Be very smart about this and pay attention to what your body is
telling you. Don't let anyone give you steroids - the worst thing
you could do. Also, NSAIDS make any nerve damage worse.
Time is your best ally.
I'm not a doctor and this is not medical advice.
But I sure as heck wouldn't trust any doctor who advises you about
this unless he/she is very familiar with these reactions. Do your
research and look out for yourself. It's a minefield out there.
So sorry this happened to you. I went to India and was sick with a
gut infection when I returned (in 1999) and then they gave me cipro
and the rest is history.
Some people recover completely. We'll keep our fingers crossed for
you.

18710 From: <WAlakhdar@a...>
Date: Mon May 3, 2004 7:50am
Subject: Re: Re: Achilles tendon pain - when will it get better?
To Questions: Nsaids and recovery
But first, my best wishes for Anne and all the rest of us with this thing.
ON the subject of NSAIDS, my lyme-literate doctor gave me celebrex to treat
the inflammation, and maybe it is helping with pain. Can't see a difference in
inflammation yet. If I am no longer on the levaquin, can I take celebrex.
And if not, what research says not to, and why? I know I have run across this
warning before.
My legs are so swollen that is causes a lot of the pain, and when the
swelling is down, the pain is a little better. Doc also put me on an aggressive
water pill plus potassium. However, I can't take this forever! When does the
elephant legs return to normal? What do most people experience?
And my heart cannot stop running. I wipes me out and sets off the tears.
ON the subject of recovery, what is the average length of time for those who
have recovered to get there? Does anyone know this? And is there any formula
for this happening?
I have been fighting late stage chronic lyme disease for many years, and
finally started to see a clearing in the woods, until I was hit with Cipro and
levaquin. Not I am thrown back into darkness and hope of recovery feels totally
lost.
Any encouragement would be good. News of recovery always good.
Mary



18713 From: Debra Morse <debm@c...>
Date: Mon May 3, 2004 2:15pm
Subject: Re: ZITHROMAX 500 mg?????


I have no idea if Zithromax will cause any bad reactions for you or not but
I have taken it 3 different times since being floxed last May and each time
it has taken care of the infection without causing any side effects for ME.
I personally believe it's a crap shoot with ANY medication once one has been
floxed. People are sooo different and have such different reactions to things
that there is no one answer
for whether any given medication will cause problems for you or not. Unfortunately
the only way to find out is to try it and see...sigh!

Debra

Does anyone here know if zithromax 500 mg (antibiotic in macrolide class) do
some bad adverse reaction because i took cipro 500 mg twice a day for a periode
of 5 weeks for a protatitis and had a very bad reaction! I still have side effects
like a lot of floaters in the eyes and a mild ache in my right shoulder and
legs. I dont know if its related with cipro but i also have digestive problem.
It's been exacly 1 year and 6 months that i took this KILLER pills and still
have a bad vision(floaters).<BR>
Now i have to took ZITHROMAX for an urinary infection...i have to take 4 pills
of 250 mg and want to know if i will have some bad and long therme side effect.<BR>



18716 From: Rex Wockner <rex@c...>
Date: Mon May 3, 2004 8:54am
Subject: Re: ZITHROMAX 500 mg?????
I still have the damned floaters too.
Only remaining side-effect is an occasional feeling
of weakness in my Achilles tendons.
Soy and poultry, however, make some of the
other symptoms come back for a couple of weeks.

18717 From: Angel_8384 <lparker30@c...>
Date: Mon May 3, 2004 8:47pm
Subject: Chest pain when I move around...

Anyone else experience this? kinda a newer symptom for me... lol
love every day now always something new and interesting about me
that messes up lol.
its like a bruised like pain in the chest when I move a certain way.
all my glands are seeming to be up as well today and my throat is
nasty like.having the weird tremor thing through out my body as well.
ah well how are you all doing today?



18720 From: bobgroz2001 <bobbygr@r...>
Date: Tue May 4, 2004 3:18am
Subject: IN FOND MEMORY
I just received our first story that resulted in a death. Her name is
Kim. Kim's mother, Betty had the courage to send us Kim's story along
with a picture of her very pretty daughter. As hard as these ADR's
are to live with day to day, it would be much harder to lose my
daughter. I cannot even imagine the pain of losing a child.
It was hard putting this story up - it's hard to see when your eyes
are filled with tears.
There is a new section at www.fqvictims.org called "IN FOND MEMORY"
We will be placing the stories of those who have died from
fluoroquinolone antibiotic therapy.
When you go to this new area - there is a "click HERE" above the list
of stories where you can pass along any comments to us - that we will
include on the story page. As we receive comments, we will update the
story page with them.
When you read the stories - anything that may move in your heart -
please send those thoughts along to us - so we can add these thoughts
to the story.
We must do everything we can to prevent these tragic deaths. It is
our duty before God.
Thank you all.....
Bob



18724 From: bobgroz2001 <bobbygr@r...
Date: Tue May 4, 2004 5:19am
Subject: Re: Nightmare with Tequin
--- In quinolones@yahoogroups.com, "ljjeff_2000" <ljjeff_2000@y...
For one thing stop taking the Tequin immediately - especially with the
steven's - johnson syndrome. Don't be alarmed if these things don't
clear up by Wednesday. For many of us they last much longer than a
week.
Your Doctor is an ass - giving you those drugs without checking your
medical history. You very well could have a lawsuit - although I'd
get a family member to manage that for you.
Please keep us posted on what's going on. That way if someone has/had
similar symptoms - you might get some good advice. I hope this does
pass quickly for you...
Bob

Hi,
I started taking Tequin last Tuesday when I was given samples of
them for a broncial cold to be taken for seven days. By Thursday
night, I could not sleep, felt like something was stuck in my
throat, and had extreme, almost psychotic nightmares and itching.
Friday I went to work. I had tinninitus, vertigo, nausea,
confusion, memory problems, weakness, and on and on. When I called
my doctor they said it could just be the illness, bronchitus, they
were treating. I knew better. They did not tell me to stop taking
the mediction and as panicked as I was, they were calm and
unconcerned.

Saturday morning I woke and my eyes were swollen shut and all the
same symptoms continued. Called the hospital and the nurse said it
was not an allergic reaction unless I was having trouble breathing,
which was about the only thing not happening. My husband noted my
confusion. Called the pharmasist and he said about the same thing.

Sunday things were no better and I debated going the the ER. Called
my insurance and spoke with the nurse. By this time I had been
online and found out what a danger this drug could be. The
insurance nurse was the first to seem concerned and told me I should
call my doctor and in the meantime stay in a comfortable position
and not move around too much due to the vertigo. Called my doctor
and he was completely nonchalant about what was happening to me and
said I'd just have to ride it out for about 5 days from the last
time I took it, which was Friday. So...I guess by Wednesday I'm
supposed to be better. This is a nightmare!!

On top of this, I have a history of Steven Johnson's Syndrome and
the doctor's office also sent me off with a sample of Advair
inhaler, which I have since learned is contraindicated with Tequin.
I had not instructins not to drive or warnings that it might cause
dizziness, which would have been the least of my worries. I am
concerned about trying to work like this for the next three days,
yet equally concerned about missing that much time from work. I am
a counselor and Friday, when this all started had to dismiss a
client because the vertigo was so bad I was concentrating on not
falling out of my chair.

Have others experienced this nightmare, and what have you done about
it. I will be changing doctors, but I don't want anyone else to
experience this nightmare. It has been miserable and I hope there
are no long term effects. Please help me with any info. I'm not a
big believer in law suits, but I think there has been some
significant negligence. Opinions.... I'd appreciate any input.

LJJ


18725 From: Laura <lparker30@c...
Date: Tue May 4, 2004 9:08am
Subject: Re: IN FOND MEMORY

Im sorry to hear this am young myself scares me to think abot it now, right now having a real bad reaction and can't stop shaking for the life of me.

18726 From: bobgroz2001 <bobbygr@r...
Date: Tue May 4, 2004 7:43pm
Subject: Re: IN FOND MEMORY
Laura,
I don't believe you need to worry about dying. Usually those things
happen pretty quickly after taking an FQ. I shook horribly after I
was floxed. My arms moved all the time. I paced like a caged animal.
My life consisted of shaking and jerking around walking in and out of
our front door smoking cigarettes (I had quit smoking 10 years ago but
picked it up because of the HORRIBLE anxiety).
I shake very rarely anymore. I do jerk sometimes in bed - but nothing
like I was early on.
Please keep us all informed of your progress. If you need any
specific help - email us at fqvictim@f... and we will do
everything possible to help you.
Hang in there Laura - we are all going through this with you.
Bob

18727 From: John Edward Roe <angelbab@s...
Date: Tue May 4, 2004 7:45pm
Subject: Re: ZITHROMAX 500 mg?????
Hi, while I am still not certain about Zithromax, I can tell you that last January, I was given a Z-pak (shot gun approach) medication to help me with a respiratory infection. I too am a sufferer from quinolones, and had been in my second round of leg casts from the previous August (2003). Additionally, I had been in physical therapy since September, and once given the Z pak, left the p.t. on Friday, started the Z pak, and by Monday, was in full blown swelling and pain. My shoulder joints were badly swollen, and the calves and tendons on both my legs were a mess. My physical therapist said it looked as though the progress we'd made, was all cancelled, so he was amazed. I wound up having to have another shoulder surgery the end of January, and went to 2 surgeons to check out my tendons,only to be turned down because of the liklihood that they would heal and I would recover. I asked my general doctor whom I trust very much if there could be the reaction to the Z pak that I had to
the quinolones, and she assured me that there was no reaction that she knew of that would substantiate that. She began researching the quinolone theory after I had my first bout of achilles tendon inflammation and rupture in April of 2000, so although she had not heard of it prior to my episode in 2000, she firmly believes that it does happen to folks, and has been very supportive of me telling me that I must list quinolones as a no no for the future. What puzzles me though is that since I have been "floxed", I have to be very careful of medications because of the damage that I believe has occured in my system, and therefore, anything can cause me to have a reaction from now on. I deal with acid reflux disease as well, so along with everything else I have, (fibromyalgia, arthritis, degenerative disc disease to name a few!).
Anyway, I would still be very cautious as to what I take, medication wise, and let my doctor know everything I do take to help me keep from more destruction. Hope this helps, and good luck! NR

Yves Beaupre <y.beaupre@v... wrote:
Does anyone here know if zithromax 500 mg (antibiotic in macrolide class) do some bad adverse reaction because i took cipro 500 mg twice a day for a periode of 5 weeks for a protatitis and had a very bad reaction! I still have side effects like a lot of floaters in the eyes and a mild ache in my right shoulder and legs. I dont know if its related with cipro but i also have digestive problem. It's been exacly 1 year and 6 months that i took this KILLER pills and still have a bad vision(floaters).
Now i have to took ZITHROMAX for an urinary infection...i have to take 4 pills of 250 mg and want to know if i will have some bad and long therme side effect.
Tanks for your help!
Yves



18729 From: Laura <lparker30@c...
Date: Tue May 4, 2004 9:39pm
Subject: Re: Re: IN FOND MEMORY


Thanks Bob, I fel a little better right now but last night was a particularly bad one, I hate thinking about death but my mind won't let me stop thinking about it.
Think I had the reaction from eating rthe worse I have eten in a very long time, was Mcdonalds and junk food all day, I warn people never ever eat mcdonalds god I regret that I jsut want a normal life back and I want the poeple that poisoned me to pay. but glad I some how through all this nightmare found this group that understands <3
becasue that's probably the most important thing in life is for you to have someone who understands what you are going through becasue it's horrible alone.


18731 From: Betty Crawley <beejay31@c...
Date: Wed May 5, 2004 0:53am
Subject: Re: IN FOND MEMORY
Dearest Laura:
I just read your e-mail, where you wrote:
"Im sorry to hear this am young myself scares me to think abot it now, right now having a real bad reaction and can't stop shaking for the life of me."
I felt so sad when I read that -- as I feel my writing about our daughter, Kim, may have caused you some distress. I just felt compelled to write to you, and hopefully, reassure you that, for the most part, Victims of Quinolones seldom suffer such a terrible adverse reaction. I have read many, many e-mails from individuals who have suffered from quinolone reactions -- and their symptoms are numerous, often quite severe and debilitating -- but am only aware of one other instance similar to that of our daughter. And, in that case, the individual also suffered from other major health issues and should never have been prescribed a quinolone.

In the hope it will ease your mind somewhat, I would like to share with you something about our daugter Kim. Kim was only seven months old when she was diagnosed with Neuroblastoma, a type of cancer. She had a massive growth in her abdomen, and underwent surgery twice, radiation, and chemotherapy which continued over a period of four years. When she was 18 months old it was discovered the cancer had spread to her head -- and she underwent Cobalt treatments for that.

At the end of the four years, her chemo was discontinued, and she was followed by a Oncologist every 3 - 6 months, and then at yearly intervals for the next ten years. At that time the Cancer never recured -- and it was felt she was cured!

Unfortuantely, the Chemo and radiation damaged her left kidney so severely that it no longer functioned. Her right kidney functioned at about 30 - 40 %. Her growth was also affected by the radiation -- and she was quite petite. She was actually only 4'6" tall -- but somewhere along the line, she somehow added an additional two inches to her height -- and when anyone commented on her short stature, she promptly informed them she was all of 4'8" tall!!

Kim had health problems over the years, and was always under the care of a Kidney Specialist, as well as a Gastroenterologist, as the chemo and radiation had left her with digestive system problems. In spite of all this, Kim had a GOOD life! She sustained a learning disability due to the cobalt treatments to her head, and had a problem with reading comprehension. But Kim was never one to let that stop her. She worked hard all through school, and often had a tutor, but she graduated from High School, and went on to do many things the doctors had told us she never would do!

Because she was so short, Kim was not allowed to take drivers ed in school. She wanted so much to drive, so after graduation, we took her for private driving lessons. One of the proudest days of her life (and mine too!) was the day she took and passed her test and received her driver's license!

Kim worked in a Retirement Home, and while there she found she had a real knack for relating to "Senior Citizens". She loved people of all ages, but seemed especially fond of older people, many of whom had no family close by. She "adopted" many as her "grandparents" -- and even when she left the job, continued to visit and enjoy the company of many friends there.

During the last three or four years of her life, Kim began to have more problems with her functioning kidney, as well as with her liver --both of which were damaged by the treatments for cancer. Although she had a Kidney Specialist who followed here closely, she also was seen by a Family Practice Physician for other problems.

In May she developed what appeared to be an upper respiratory infection, and went to see her Primary Care Doctor. She as diagnosed as having either bronchitis or pneumonia -- tho her doctor did neither a sputum culture or a chest x-ray! He simply prescribed Cipro for Kim.

It was only several months later, after consulting with a number of nurses we met through a Bereavement Group, we learned that ANYONE with major kidney and/or liver disease should NEVER take Cipro! Although it is a very uncommon adverse reaction, a person with such kidney and/or livr problems can go into sudden Anaphylactic Shock if administered Cipro! We also learned that an individual with such health problems should ONLY be given Cipro if no other medications have worked -- it is the drug of last resort for individuals with major kidney problems. Even then, if it must be given, the individual should be hospitalized and monitored closely for any adverse effects!

Or course, this was not done in Kim's situation, and because we were not familiar with the the medication, Cipro, at that time, we had no reason to question why she was given that particular medication. Kim's Physician who prescribed the Cipro was aware of her kidney/liver damage, and yt, apparently had no qualms about prescribing the Cipro. He never has admitted th Cipro had any adverse effect -- tho we have done a great deal of research, and are convinced it definitely did.

Laura, I do so hope the fact we feel our daughter's death was somehow related to the quinolone, Cipro, this is NOT the usual reaction to this medication. Kim had other health problems -- and should never have been give Cipro.

I am aware of many others who have taken quinolones and have suffered from adverse reactions -- but in time, these side effects have subsided. I do not know why you were prescribed a quinolone, but I do hope you are feeling better now, and in time the side effects will completely go away.

Again, I sincerely apologize if my e-mail concerning what we feel was our daughter's severe and deadly reaction to Cipro, has caused you undue stress and anxiety. As I said, our daughter had other major health problems -- and I probably should have explained that more fully. She died quite suddenly and unexpectedly -- after only three doses of the Cipro. I do NOT believe you need to be unduly concerned about that kind of reaction -- as it is a rare reaction -- and had we only known more about quinolones at that time, we would have questioned why her Doctor prescribed that particular medication in the first place.

One thing we have learned is to always question what medications our doctors prescribe -- to ask what the medication is supposed to do, any side effects or adverse reactions, and to ask if there is other safer medication which can be prescribed instead. I do feel in the past we have simply trusted our doctors and never questioned anything they prescribe.

Laura, we also have a 43 year old daughter and a 48 year old son who have Cystic Fibrosis. They too have major health problems -- and are under the care of spcialists, and we feel very fortunate that thy are doing fairly well at this time.

One thing, in closing. Always feel you have the right to question your Doctor about any medications he/she may prescribe. It is YOUR Body -- you have every right to know about any medications you take, and the possible side effects.

Laura, I wish you the very best and hope your health will continue to improve over time. I assume it has been some time now since your exposure to quinolone treatment, and I hope you believe me that the reaction we feel our daughter had was rare, and not the usual case. I know your side effects have caused you a great deal of problems -- but hopefully they are starting to subside -- and you will find yourself gradually improving and able to lead a long and fulfilling life.

If you should be interested in viewing a Web Page our son created in Honor of Kim, you can view it at:

inmemoryofkim@m...

I sincerely apologize for the lengthiness of this e-mail, but wanted so much to try to reassure you.

Best Wishes for the future!
Sincerely,
Betty Crawley



18735 From: jeanhanna212 <jeanhanna212@y...
Date: Wed May 5, 2004 2:15am
Subject: Abnormal blood tests


Hello,

I have had 3 blood tests since taking the quinolones (4 months ago)
and they consistently show low white blood counts. They range from
3.6-4.0. My baseline is usually higher. Has anybody else had this
problem?
Also, I seem to be developing new symptoms as far as new neuropathies
in different places after 4 months. Could one develop worsening of
symptoms? I would think the symptoms would climax in the beginning
and then gradually decrease as the drug leaves your system. Any info
woud be appreciated


18736 From: charlene goetz <adair1@c...
Date: Wed May 5, 2004 2:34am
Subject: RE: IN FOND MEMORY


Dear Betty,

I was quite moved by your response to Laura. I too had a very severe
(anaphylactic shock) to a quinlone (Avelox). I was lucky to have been home
with my family and was saved by the fast response of the paramedics. That
was almost three years ago and I'm still recovering from an array of
symptoms. I am happy to say that I'm doing so much better now and I think
I'm ready to let go of the quinolone forum. Sometimes when I see other
people reactions and symptoms, I start questioning whether I'm having them
or will in the future. I feel its definately time to move on.
I wanted to let you know that I too have two children with Cystic Fibrosis
and was encouraged to see the ages of your children. I just came home from
their check-ups and they did very well. My husband and I have been working
very hard trying to improve their PFT's and weight gain. Our daughter is
15yrs. old and our son is 13 yrs. I never let them go on quinonlones and
they both have had hives when they were put on Levaquin a few years ago.
Let me know what has worked for you as far as their health care goes, I
would really appreciate it. Take care and God Bless, Charlene Goetz


18740 From: Debra Morse <debm@c...
Date: Wed May 5, 2004 2:20pm
Subject: Re: ZITHROMAX 500 mg?????


Hi,

Just wanted to say that you are an example of exactly what I was talking about
when I wrote that "I" had taken Z-packs 3 times since being floxed with NO adverse
effects yet here you have suffered tremendously from having taken them! I truly
believe that we are all soooo different in how we will react to
ANY drugs since being floxed because our medical history's are all different
and we are all physically and genetically different as well. That's what
I meant with my comment about it being a "crap shoot" now as to what meds will
cause reactions and how severe those reactions will be since the fq's.

Debra
Hi, while I am still not certain about Zithromax, I can tell you that last January,
I was given a Z-pak (shot gun approach) medication to help me with a respiratory
infection. I too am a sufferer from quinolones, and had been in my second round
of leg casts from the previous August (2003). Additionally, I had been in physical
therapy since September, and once given the Z pak, left the p.t. on Friday,
started the Z pak, and by Monday, was in full blown swelling and pain. My shoulder
joints were badly swollen, and the calves and tendons on both my legs were a
mess.


18741 From: teoflox <teotec@c...
Date: Wed May 5, 2004 2:31pm
Subject: Re: Abnormal blood tests


"jeanhanna212" <jeanhanna212@y... wrote:

Also, I seem to be developing new symptoms as far as new
neuropathies in different places after 4 months. Could one develop
worsening of symptoms? I would think the symptoms would climax in
the beginning and then gradually decrease as the drug leaves your
system. Any info woud be appreciated

Depending on the intensity of the intoxication with quinolones, new
reactions can develop months and even years after taking them.

If the intoxication is mild, recovery can start as soon as the drug
is discontinued.

If the intoxication is severe, new symptoms (all of them very well
described in this forum before) can develop up to two years after
cessation of the drug or even later.

Most of the delayed symptoms are of a neurological nature. Nobody
nows for certain what is the real mechanism behind this fact. Many of
us have shared in the past diverse ideas and opinions that could
eventually offer an explanation.

I currently believe that the toxicity of the quinolones generates a
drug induced vasculitis (narrowing of small blood vessels). The only
way of proving it is through a nerve-muscle biopsy. The progressive
dysfunction of the nerve endings due to the lack of proper supply of
oxygen and other nutrients leads to many neurological symptoms like
peripheral neuropaties (numbness, tingling, tremors, fasciculations,
twitchings, loss of sensitiviness, cold hands and feet, joint pains,
and the like); internal organ dysfunctions (systemic disorders
related with the gastrointestinal system, heart arrytmias and
palpitations, internal spasms); vision problems (diplopia, focusing
alterations, and others).

Many other problems can develop due to the ischemic process (lack of
blood supply in tendons, connective tissue and vital organs), and due
to the true and potent chemical toxicity of the quinolones.

Depending on personal conditions, some vessels are more affected than
others, so symptoms vary a lot between individuals. The intensity of
the intoxication plays a critical role.

Many people recover uneventfully.

Teo.


18744 From: LuAnn Jefferson <ljjeff_2000@y...
Date: Wed May 5, 2004 10:55pm
Subject: Re: Re: Nightmare with Tequin


Hi Bob,

Thank you for responding. I am learning so much and
have gotten such good advice i.e. checking back in my
medical history to confirm if I'd taken these before
and it was not properly identified.

I won't be alarmed and I will be firing my doctor who
does not acknowledge that the symptoms have anything
to do with the Tequin even when I was armed with the
all the information I'd printed out from my research.

Guess what...it's Wednesday and...still waiting for
improvement. My face isn't swollen, but that's about
it! My doctor did order and MRI on the brain, cervial
and shoulder. I'll get those and move on to another
doctor. Does anyone have any suggestions how to find
a doctor who has a clue about this?

Thanks again. This has been really helpful to me to
be able to connect with others who have had similar
experiences. I had no idea.

LuAnn



18745 From: shelley <blondeambitionz@y...
Date: Thu May 6, 2004 0:26am
Subject: New to Group


Hi everyone. I am new here. I was floxed by Cipro in Jan 04. You can
read my story on www.fqvictims.org. Still in recovery but much
better than I was. My heart goes out to everyone who has been
through this nightmare.

Thanks,

Shelley


18749 From: melkwp <pino@f...
Date: Thu May 6, 2004 10:47am
Subject: Boston Doctor??/Vasculitis/Thyroid


Hi everyone,

My name is Mel, and this is the first time I've posted on the yahoo
group, although I posted my story on Bob's website last week. I've
been logging on to this forum off and on (typically, whenever I'm
floxed out with insomnia) since I was nailed by Floxin last September
(at the 9-month now and things are morphing and heating up).
Although I have been absolutely convinced since I took myself off of
the Floxin on day 8 that my symptoms were the result of quinolone
toxicity, I have been going through all the usual absurdities with
different doctors and even had one temporarily convince me my primary
trouble was hypoglycemia (which I do have now, and I am fully aware
it was probably caused or exacerbated by the quinolone). After a
month of a sugar and carb free diet, I just kicked into the longest
attack I've had since I was taking the stuff last year.

Made an emergency room visit last week because I thought I was going
to have a heart attack; my doctor was convinced it was hyperthyroid.
They ruled that out and so perhaps I can convince him now that he
needs to refer me to an endocrinologist and/or neurologist that
specializes in drug reactions. I'm desperately awaiting my
appointment next Monday. In the meantime, does anyone know of a
doctor who acknowledges this problem and is proactive about treating
it in the Boston area? I would be so *thankful* at this point to run
into a doctor who knew as much about fluoroquinolone toxicity as we
do. (Or, knew about it at all for that matter.)

Spent 12 hours researching on the web yesterday (if I could spend the
hours on schoolwork that I've spent researching this poison, I'd be
half finished with my dissertation right now). Many of you, I'm
sure, have already read and read about ADR's, but some of you still
might be interested to take a look at a site I found instructing
doctors on how to recognize and diagnose drug reactions. It's 45
pages long and it took me forever to read it, as I had to plug in
every other word to an online medical dictionary, but I felt like I
at least had a broad-based understanding of the different
categorizations of ADR's when I finished. Quinolones are mentioned
in it a few times. It's at
www.jcaai.org/Param/Drugs/Commentary.htm. If the link isn't working,
Google "vasculitis" and "quinolone" and it should be among the first
few listed.

I was researching anaphylactic vasculitis yesterday after reading
Teoflox's posts; many similar symptoms, especially terrible pressure
on my face and in particular the bridge of my nose. But after
tooling around for a few hours it didn't seem that the vasculitis
would be the case of the severe insomnia (I've had three nights of
sleep in the last week). So I'm wondering if it couldn't be a
combination of that and thyroid stuff. I found out yesterday that
ALL fluoride compounds, organic or inorganic, bring havoc upon the
thyroid, although not directly--through the brain and liver (this is
why people are campaigning to get fluoride out of drinking water, and
why much of Europe has already gone that route. It's no joke; a past
president of the AMA and a Noble prize winning doctor have come out
publically against the overuse of flouride). Although most of the
reading on it seems to be on quinolones as a result of hypothyroid
(or Graves') as opposed to hyperthryoid, it seems very possible that
by messing with the TSH secretion (thyrotopin, which regulates the
secretion of thyroid hormone), just about anything could happen
between the thyroid and the pituitary gland. This would explain the
paradoxical problem Teoflox mentions of why phosphatidyl choline
would help some people and throw others into new attacks. Any
thoughts? And, more specifically, has anybody tried beta blockers or
a natural remedy for hyperthyroid?

Hang in there everybody,

Mel


18750 From: toomuchpsi383 <toomuchpsi383@y...
Date: Thu May 6, 2004 2:10pm
Subject: 2 1/2 years ago....


2 1/2 years ago, I had a horrific reaction to Levaquin.. I was on it
for a prostate problem (minor) and took Levaquin for a month straight
with no side effects...

One day I woke up feelign tired and restless and then my left arm and
face went numb.. I also noticed a small rash on my arm.. Next thing I
knew, I had an all out Panic attack of huge proportions.. I have
never in my life had one before and man was it bad.. My fiancee thank
god got on the internet right away and found this website..I flushed
that poison called Levaquin that night. Soon after I had all kinds of
problems which I will call phase 1.

extreme anxiety, jittery feelings, burning sensations shoot up my
arms, down my legs and back,extreme sensativity to light, ringing in
the ears,blurred vision,rash on arm,high liver count.

My doctor said it was due to stress and pushed me out of his office
with a prescription of Paxil. What an ass. This was not a mental
problem, but a toxic reaction to Levaquin. It fried my nervous
system,ears, eyes, everything... This doctor said he hands it out
like water and it cannot possibly be the drug. . Thank god I did not
take his poor advice.

So for the next 3 months I am dealing with these problems.. Anxiety
is reduced to Jittery feelings, burning sensations less, then BAM!! I
get hit with horrific muscle and joint pain.. To the point my 32 year
old ex healthy self could barely walk. Every muscle and joint in my
body was hurting. I could not walk up stairs, of my calf and legs
muscles would burn.. Typing made my hands hurt like massive
arthritis. Severe muscle twitching in my face and calves also.

Then everything over time turned into cycles. Cycles of anxiety from
an overstimulated nervous system. Cycles of muscle and joint
pain..The cycles became less and less after the first year and a
half. I would start having a week or 2 at a time without symptoms...

Well 2 1/2 half years later I am MUCH better. First 16 months was
tough. I am now in the gym lifting heavy weights again doing serious
weight training.. I never though 2 years ago I could walk up a flight
of stairs, let alone bench heavy weights.

Lingering problems are permanent blurry vision in my left eye. Not
bad because my right can compensate. Constant ringing in the ears,
something I have learned to live with. I cannot have any caffeine or
my nervous system will go crazy..No chicken at all. Cut it completely
out of my diet.

Just wanted to let the new people here know that things can get
better over time and you can get past this nightmare..

Kevin


18752 From: Rex Wockner <rex@c...
Date: Thu May 6, 2004 6:17pm
Subject: Re: IMPORTANT: Take the FQ Survey !


Name: Rex
Age: 46
Sex: M
Ethnicity: white

City: San Diego
Country:
Telephone:
e-mail: rex@r...

1) Describe the events leading to your ADR; please include:

- date of ADR: October 2003

- flouroquinolones taken (duration/dosage): Cipro 500mg 7 days

- other drugs taken (duration/dosage): none

- sequence of symptom onset: My ADRs began two months after. They
included: Foot pain; severe Achilles tendon pain; bizarre electrical
sensations in the arms; severe eye floaters; a feeling of fullness or
swelling in the lower legs; numbness and tingling in the hands, arms, legs
and feet; pounding heart; salt craving; chest pains; an eye tic; a
right-side headache for two months; out-of-synch eyes; nasal congestion (I
have no allergies); and tons of cavities when I usually have about one
every 5 years. At this point, 9 months after taking Cipro, I am left with
Achilles tendon weakness and pain, severe eye floaters, lots of new
cavities and occasional sensations of electrically charged arms and legs.

3) Before your ADR, how regularly did you:

- Drink caffeinated beverages (tea, coffee, colas)? Daily

- Eat or drink products with aspartame (eg. diet foods)? Weekly

4) Since your ADR, how regularly do you:

- Drink caffeinated beverages (tea, coffee, colas)? Daily

5) Progression of symptoms/treatments:
- Describe how symptoms have progressed since the initial ADR.

See above.

7) Food/Drug Reactions:
- List any observed reactions (both positive and negative) to food,
drugs and other stimuli that you attribute to the ADR. Indicate any
pre-existing allergies when applicable.

FOODS:

- chicken: causes cycle
- soy products: causes major cycle of symptoms

STIMULI:

8) Would you be willing to speak to journalists about your case?

Yes! And I am a news reporter myself.

18753 From: Laura <lparker30@c...
Date: Thu May 6, 2004 6:08pm
Subject: hospital


planning on going to the hospital maybe this weekend to have them check me out and to also get a prescription for urinary catheters and incontinence pads(have had this problem all my life not from the FQ)

I was just wondering what should I tell the doctors there to make them understand whats wrong with me?

I am a bit worried right now been really feeling awful in the last few day and it seems to only get worse, I have had severe attacks of crying and shakign and feeling as though my heads going to pop along with numbnewssin my facew and hands again. plus new pains in my legs.

the reason I ask what I whould tell them is that I have a hard time really telling them everything.and the last time I told them everything they just looked at me like I was a quack.

soo any key things I should have them look for?


thanks again ,

Laura

18765 From: kristinelanglois <kristinelanglois@y...
Date: Fri May 7, 2004 4:13am
Subject: please let me help you


My name is Kristine.....two years ago this website saved my life yet
scared me so much that I have never posted and rarely logged on....i
could not find much hope here and I was in so much pain. I made a
promise that if I could find a way to get well...find a way to get my
life back, I would then spend everyday trying to help others.
My story like all of yours is bad...very,very bad...at least 54
symptomologies....it all started with a uti...I was just a thirty
year old mom with two small children and a nine month old baby boy.
I ended up in a medical nightmare that left me barely hanging on. I
was given Leviquin then flaygyl then as more symtomolgy appeared and
no doctor recognized it as such tequin and the finally i.v. cipro and
flagyl in man size doses to my suddenly frail,body....when I left the
hospital that day my skin burned instantly in the sun and I don't how
I didn't die in the weeks that followed. My list of symtomology goes
on and on gastro. distruction,tendon pain everywhere,joint pain
everywhere, burning everywhere, abdominal pain, eye pain,
hallucinations, night terrors, huge uncontrolable yawns, anxiety, ear
pain, swollen lymph nodes, for 21/2 months I had to sleep sitting up
or my face would swell, tingling in my hands, feet and forehead,
purple toes that would then swell up and turn red hot, muscle
twitches everywhere....on and on and on...16 doctors later and my
refusal to take anything for the pain or the anxiety the doctors
would't even look at me, wouldn't look at any information we had and
had nothing to offer but more pills....so one beautiful summer day as
my three children played in the yard I made a decision I would either
take my life or I would take my health into my hands and find a
way...I had so much to live for, much more than I had ever realized.
I slept clutching rosaries and prayer cards as I thought I would die
any minute but I refused to stay in bed or pull myself out of
life ...crawling up my front walkway trying to figure out how to drag
one bag of groceries with me as my children watched in horror....but
I searched and searched and did my best to find and read anything on
natural healing.......if i had not craw;ed into a church early one
sunday morning begging god for help I would have never found my
answer and what I hope can be an answer for all of you......that day
in the church two little old women were in the back..i had no
idea..they came rushing over and held me in their arms...one of them
gave me the name of a holistic chiropractor...it wasn't until two
months later in desperation my husband picked up a pile of random
numbers that people had given us and dialed his first....he told my
husband to get off the phone and order the ph miracle by Dr. Robert
O. Young...three days later it arrived and I read it over and
over...In October of 2002 I began drinking a product called
supergreens...but only small amounts i didn't trust anything ( not
supreme greens on the infomercial!) I was doing so many different
therapies at that time and things were cycling so I didn't know what
was doing what but that is when I got my first break from the
pain...but things went on...constant cycling ..not until one very,
very bad day in Feb. of 2003 did I decide that I had to trust in
something....things were still spinning out of control. I began the
full program in Dr. youngs book which began with a 10 day liquid
cleanse....it was not easy I did some scary detoxing....that was the
second week of March 2003...the pain began to dissappear...I began
drinking more greens and met peole who had cured themselves of all
kinds of disease using his methods..by june I was walking normal by
July I was walking every morning I did more cleasing and tried my
best to follow the alkaline diet laid out in his book....unfortunetly
for me the only thing I kept having trouble with was sugar...I would
throw myself off and set myself back BUT...my symptomology was still
slowly changing and I was suddenly able to run up the stairs
again...I danced all night at my brother-in laws wedding in
November....I now going to the gym 6 days a week and my symptomology
has gone from around 54 to around 6...I spoke to hundreds of people
at a health conference given by Dr. young in Boston in March...I told
people all of our stories, I warned them of the danger and I told
them how Dr. Young science had saved my life(he is a microbiologist
not a western medcine doctor) I was able to sit down and meet with
him...he is truly amazing, his products are truly revelutionary....I
want so badly to help all of you please let me.......I want no one to
live one more minute of their life with that pain...please call me, e-
mail me, I live in Massachusetts, please I know I am supposed to help
you....I truly hope i can kristine Langlois
quinolone survivor
klang3@c...


18766 From: vmuleus <vmule@c...
Date: Fri May 7, 2004 11:54am
Subject: Re: IMPORTANT: Take the FQ Survey !

18767 From: spyrodas <spyrodas@y...
Date: Fri May 7, 2004 0:42pm
Subject: Instead of taking quinolones,


Hello I am new in this group and this is the first time a have posted
on this site.

I had been taking quinolones for 2 months at the begginng of 2002,
first cypro for 10 days that it didn't help me at all with my
infection in prostate, and the rest period noroxin, that it was more
effective). After a couple of hours from the first dose I was
starting feeling all these symptons, fatique, join pains, etc, but i
didnt gave up the medecin as my doctor told me that it was the only
one which can confront the infection. I was hoping that all these
symptoms would go away after the treatment, but they lasted for about
1 year and half. No one doctor accept that the reason of my problems
was quinolones. I was diagnosed like fibromyalgia desease, and my
reumatologist gave me magnisium and deprassants. I took them for
about 3 months and I saw an improvemt but not a completely healing. I
finally went to a homeopathist and i succeed to minimaze all my
fibromyalgia symptoms.


The dilema is the following, if there is a need to take quinolones
for treating a chronic infection like prostatitis, because this is
the most suitable medication as it penetrates perfectly to the
prostate glad, and you are allergic to this group of antibiotics,
what is your choise?
Are other antibiotics so good at treating this desease? I have read
that sulfamide group is effective too, and Furolin also (this is its
name in Greece). Does they have any adverd reactions? I would
appreciate any help and suggestion.



18769 From: chiggins1066 <chiggins1066@y...
Date: Fri May 7, 2004 4:35pm
Subject: Can someone explain this one...

After mentioning to my ENT that I was having physical problems since
taking the Avelox/Levaquin, he gave me Medrol (Prednisone).
Some studies say Prednisone can help alleviate tendon inflammation.
But one of the side effects of Medrol is tendon rupture!
How can this be? It sounds like curing the disease by killing the
patient.
(I haven't taken any of the Medrol, nor do I intend to).




18774 From: <WAlakhdar@a...
Date: Fri May 7, 2004 6:04pm
Subject: Re: IMPORTANT: Take the FQ Survey !

I have a question for Rex. I was floxed about 2 months ago and to this day I
am unable to walk much at all. How is soy a problem for us? I take it
daily with my vitamins.

Mary


18778 From: chiggins1066 <chiggins1066@y...
Date: Fri May 7, 2004 11:25pm
subject: Re: ANOTHER THING I NEED ANSWERED...

What do the spots look like?

I had a skin reaction in which a chicken-pox like rash developed on
my palms and fingers. It was a prickly rash basically. Fortunately,
after a couple weeks, it pretty much vanished, save for a spot here
and there. The rash first developed about 2 days after quitting
Avelox due to lower leg pain and wrist pain.

My skin has been a mess since going on steroids for sinusitis. I get
strange vascular red marks, lots of pimples, etc. I went to a
dermatologist, but he didn't seem too concerned.




18789 From: davos12908 <davos12908@y...
Date: Sat May 8, 2004 11:17am
Subject: Floxin-1998 Anaphylaxis-near death


In April of 1998, after taking one dose of Floxin (1 pill) I
suffered a massive allergic reaction. My blood pressure dropped to
60/38 and had an overnight hospital stay because my kidneys wouldn't
work well.

Today, May 8, 2004, I still suffer from ringing in my ears, joint
pain, and kidney pain.

This drug should be removed from the market.

Lisa


18790 From: davos12908 <davos12908@y...
Date: Sat May 8, 2004 11:19am
Subject: Re: floxin/cipro


Dear Linda,

Basically the same thing happened to me in 1998 and I am still
suffering from it today.

One Floxin pill did this to me.

Lisa

--- In quinolones@yahoogroups.com, ljb40@j... wrote:
Hi all
This is my 2nd post like many of you. I am glad to be able to
repost since I had left out many of my symptoms. I was given floxin
at an urgent care on March 24 of 96 for a suspected blader
infection. I don't recall how many pills I had taken before I
noticed a reaction, seems as tho everything became a bblur from the
begining. I started with a bad headache and took some advil, which
is a no no, but I didn't know. I didn't associate the headache with
being a floxin reaction.On the 28th of March I had severe abdominal
pain, went to the Doctor at work, he wanted to know what I had eaten
or taken, I told him floxin, he gave me mylanta and zantac and sent
me home. He also took my blood pressure which read 140/90 and I had
always carried a low bp of 118/78. I went back to work and really
begin feeling the effects of floxin. I had dizzines, insommina and
nightmares.MY jaw began to ache and I had excess salivia coming from
the left side of my mouth and my left arm would jerk.On the 11th of
April I could not work any longer.My mind was so fuzzy and my vision
began to blur and I was dizzy. I go back to the urgent care and
there my bp had risen to 160/120.They were able to get my bp down
after spending 8 hrs there, then they gave me cipro. Why I don't
know unless the Dr thought that maybe my bp could be contributed to
an uti.Well that is really when my hell started. The insommina grew
worse, the anxiety was running next to fear,I had a burst in the
back of my head on the left side, it felt just like an explosion. My
vision was getting worse everything was distorted and blurry, even
now if I look at the moon the bottom falls out and it becomes oval
shaped.walls would slant suddenly. I had muscle and joint pain plus
my body would jerk not noticebly but I could feel it. I had never
taken any kind of meds for anxiety, but I do now that is still with
me.my head feels like I have medicine head all of the time.The
bottom of my feet burn at times now, early I would have burning
sensations all over.I too have had a mutiple of test sed rate
autoimmune, mri's. After taking the floxin/cipro I did develope
carpel tunnel and had surgery for that. I also had a cervical fusion
for pinched nerve in my neck, didn't have that before floxin/cipro
either. Had not been in a wreck or had a whiplash.At todays date I
still feel like hell.I have so much pressure in my head and am so
dizzy there are days that I am hardley functionally.
LAt the begining I could hardley sign my name. I still have
trouble concentrating. Sometimes I have to really grope for the word
I want to say and sometimes they won't come.
LLinda





18794 From: <sweet1956pea@a...
Date: Sun May 9, 2004 10:36am
Subject: Re: help someone... my legs feel weird


I have had a similar feeling, but don't know what it is. Also, had weird
"swirls" of hot and cold going through my legs at the same time. Again, don't
know the cause, but the quins do anything they want to do.
Take care.
Patti


18800 From: shelley <blondeambitionz@y...
Date: Sun May 9, 2004 11:59pm
Subject: peripheral neuropathy - Mary

Speaking of peripheral neuropathy, what exactly is this and what are
it's symptoms? I have been researching on the Internet, but I would
like to know from someone who has actually had or has it. I
experience weakness often, tremor, tingling, etc..wondering if that
is it.



18801 From: shelley <blondeambitionz@y...
Date: Mon May 10, 2004 0:01am
Subject: WEIRD Symptom - anyone else experiencing this?

Hello - just curious if anyone else has been experiencing this
strange symptom. Ever since being "floxed" in February, everytime I
yawn my entire body feels like it becomes extremely weak. I feel
like my muscles are very weak, especially in my arms. I also have a
strange feeling in my throat, almost as if it were closing up. It
feels like the muscles are constricted for a few moments.

I thought this was really weird and didn't know if there was a
connection with this symptom and the Cipro I took. I appreciate
anyone's comments.


18804 From: <WAlakhdar@a...
Date: Sun May 9, 2004 9:38pm
Subject: Re: 2 1/2 years ago....

Hi LuAnn:

I am also new to this group. I was floxed 3 months ago and haven't gotten a
bit better yet. Don't know when I can expect to start feeling better, if
there is any general range.

Went to the mall today to shop, and just as it has been ever since getting
floxed. I am dripping with sweat, droplets falling off my soaked hair, by the
time I leave. I am just totally embarrassed. People stare in disbelief. And
I break a sweat over anything. In the beginning, I was waking up at night
literally in a puddle, soaked through my pajamas, the sheets, and the mattress
cover.

Now, here is a question for you ladies out there, and for you gentlemen,
don't read further...

Have any of you ladies stopped menstruation after being floxed?

Well, I said it.

Would like to know.

Best to all,
Mary


18806 From: pwdrskiers <pwdrskiers@n...
Date: Mon May 10, 2004 1:10pm
Subject: Human growth hormone


FYI--I noted several folks that have been diagnosed with Human Growth
Hormone deficiency on the forum over the last few months. Well, it
appears that I too am deficient in HGH. My IGF1 levels are below
normal and I will begin taking supplemental hormone in the next week
or two. The endocronologist says I have some type of problem with my
pituitary. I asked if the drug could be responsible--the answer was
probably not, but not out of the realm of possibility.

For those of you that have not been tested for ALL hormone
deficiencies or excesses since being FQ'd, I strongly encourage you to
do so. MANY people have ended up with such problems since taking an
FQ. So, have ALL your hormones tested including thyroid,
testosterone, estrogen, DHEA, IGF1, prolactin, parathyroid, etc.
Demand it from your doctors.

Low or high hormone levels CAN cause all of the problems we experience
from FQ reactions--muscle/tendon/joint problems, vision problems, skin
problems, bone problems, psychological problems, peripheral
neuropathies, etc.

If you are tested and end up with deficiencies or excesses, post your
results for the group to see.




18810 From: Larry <marranzino@s...
Date: Mon May 10, 2004 5:04pm
Subject: Re: Re: Human growth hormone
18813 From: chiggins1066 <chiggins1066@y...
Date: Tue May 11, 2004 1:58pm
Subject: Some theories and questions


We know that quinolones can cause tendon inflammation (and rupture).
Is it possible that this inflammation can crowd adjacent nerves
(specifically in the carpal tunnel and ankle region) leading to nerve
trauma. In other words, are cases of peripheral neuropathy in fact
tendon (and perhaps muscle tissue) related?

A couple days after going of Avelox, I developed a weird rash on my
hands. It was like flaming red chicken-pox, lots of small red dots
scatterd on the palms and fingers. Most of it has gone away, but
during physical therapy last night, I noticed my hands starting to
turn red again -and then I made the connection. It is vasculitis, not
a rash. it is a circulatory issue caused by the inflammation in the
wrists and elbows. It is commonly called "allergic vasculitis."

Another thing I noticed was that during the time I took both
Prednisone and the quinolone, I didn't have and ADRs. It wasn't until
AFTER I had finished the steroid, that I began getting led pain, wrist
pain, etc. I think this is because the Prednisone is an
immunosuppressant, and any autoimmune/allergic response would be kept
in check. The minute this was taken away, BAM! The immune system
starts freaking out, attacking the skin, tissue, etc.

So my question is, how many of you have had Vasculitis? Check the
picture on the web and see if it matches up. Also, how many of you
were given a quinolone/floriquinolone along with Prednisone (Medrol,
etc.)?


18814 From: Vonnie Burr <vonnie@m...
Date: Tue May 11, 2004 2:19pm
Subject: RE: Some theories and questions

I can’t address all of your questions, but did want to point out that
the use of Levaquin with steroids is contraindicated. The Levaquin
warning label states:

Ruptures of the shoulder, hand, or Achilles tendons that required
surgical repair or resulted in prolonged disability have been reported
in patients receiving quinolones, including levofloxacin. Post-marketing
surveillance reports indicate that this risk may be increased in
patients receiving concomitant corticosteroids, especially in the
elderly. Levofloxacin should be discontinued if the patient experiences
pain, inflammation, or rupture of a tendon. Patients should rest and
refrain from exercise until the diagnosis of tendonitis or tendon
rupture has been confidently excluded. Tendon rupture can occur during
or after therapy with quinolones, including levofloxacin.

My 69 year old father was prescribed Levaquin with prednisone.
Bilateral tendon rupture occurred 5 days later.


18817 From: Lance Duffdecker <hsspedsec@y...
Date: Tue May 11, 2004 3:55pm
Subject: Re: Some theories and questions
I imagine that in some instances, that may be what
happens. In my own case, orthopedic osteopath said
MRI of shoulder showed "tendinopathy with surprisingly
little inflammation". So, in addition to NSAID's
increasing the seizure risk, they weren't helping my
tendon pain, since inflammation was not the problem.
FQs are directly toxic to tendon tissue, they can
cause a lot of damage without necessarily causing
concommitant(sp?) inflammation.

-- Linda B.


18818 From: Lance Duffdecker <hsspedsec@y...
Date: Tue May 11, 2004 4:07pm
Subject: Re: Please help


We are all different, so my experience may not be
predictive of yours, but I had root canal/crown work
shortly after being floxed and don't believe the
numbing agent (probably Novocaine?) caused me any
additional problems. Having the work done at that
time was more difficult than usual, as nearly ALL my
tendons were problematic for me at the beginning,
including ones in my neck and face, so keeping jaw
open enough was really hard.
Just an FYI, I have read that many dentists continue
to use a mixture of epinephrine with the numbing
agent, as it helps the numbness last longer.
Supposedly they use the combination in dental school
while they are learning and it takes them longer to do
the work; and then, even though they should no longer
need to use it when they become proficient, many
continue to do so. Since epinephrine causes
vasoconstriction, and some of us believe that
vasoconstriction contributes to or causes some of the
FQ ADRs, you might want to ask your dentist about that
component.
Good luck!
-- Linda B.

18820 From: sp da <spyrodas@y...
Date: Wed May 12, 2004 10:10am
Subject: Re: Please help


I hope you to overcome all this bad reactions from
Quinolones. I would like to ask you how the
Tendonopathy is connected with food. I had join pains
since i took cipro and it took me such a long time to
recover and after a year I had a mild tendinopathy in
my right soulder.

18824 From: jeanhanna212 <jeanhanna212@y...
Date: Wed May 12, 2004 4:07pm
Subject: Constant pain......


I have been having constant 24 hours a day pain in my back. I really
have trouble moving around. The pain is straight down my back and
burning. I even developed a rash on my back from the irritation.
Has anyone else had this problem? Is this a structural or
neurological issue? What can possibly alleviate this? I just been
feeling really miserable lately because I feel like I can't do
anything anymore. I am only 24.... any advice?


18826 From: chiggins1066 <chiggins1066@y...
Date: Thu May 13, 2004 0:19pm
Subject: What is this?


After being floxed, I have carpal-tunnel like symptoms in my hands,
pain in the wrists, and neuritis in the elbows. But my hands
(specifically the left hand) is virtually always red, almost like it
is sunburned. It is worse when I type, lift something, etc. Almost
like vasculitis.

Does anyone else have this symptom?


18827 From: Lance Duffdecker <hsspedsec@y...
Date: Thu May 13, 2004 2:10pm
Subject: Re: Re: Please help

I have pasted my original response to your novocaine question below. Maybe it didn't go through the first time. (FYI, I also responded to the food question, after that.) -- Linda B.

We are all different, so my experience may not be
predictive of yours, but I had root canal/crown work
shortly after being floxed and don't believe the
numbing agent (probably Novocaine?) caused me any
additional problems. Having the work done at that
time was more difficult than usual, as nearly ALL my
tendons were problematic for me at the beginning,
including ones in my neck and face, so keeping jaw
open enough was really hard.
Just an FYI, I have read that many dentists continue
to use a mixture of epinephrine with the numbing
agent, as it helps the numbness last longer.
Supposedly they use the combination in dental school
while they are learning and it takes them longer to do
the work; and then, even though they should no longer
need to use it when they become proficient, many
continue to do so. Since epinephrine causes
vasoconstriction, and some of us believe that
vasoconstriction contributes to or causes some of the
FQ ADRs, you might want to ask your dentist about that
component.
Good luck!
-- Linda B.


18828 From: vmuleus <vmule@c...
Date: Thu May 13, 2004 6:22pm
Subject: Re: Constant pain......


Dear jeanhanna:

Welcome to the world of Hell. Hopefull, your symptoms may resolve
but for me and many others,it has not. After six years I still
remain bedridden in agony every day.

Quite frankly, I pray to God that he sends down an Archangel like
Micheal to chop up into little pieces these drug company executives
who are poisoning innocent people like us and leaving us crippled
for life. These drug company people are monsters. They intentionally
poison little children, women and adults in ordeer to weasle out of
each of their vicitms the $100 for the bottle of poison. In other
words, to them your life is worth one-hundred dollars.

And guess what, in a few months or so Levaquin is probably going to
be approved for use in children from the ages of 6 months old up to
18 years of age as currently FQ's are banned for use in children
under 18 years of age.

And to all of our Congressman, senators and the president, lets
spend another $200 billion to help the Iraqis who dance with joy at
the death of Americans while 200,00 Americans die each year and
another 2 million are crippled from Adverse drug reactions that in
80 percent of those cases are completely preventable. This doesn't
count those killed and crippled from prescription errors, doctor
mistakes or overdose and addictions.


It's time to declare war on them as I swear I will dedicate my life
to making them suffer, pay and ensure that every American knows that
our Elected officals in Washington D.C. are allowing the mass murder
of thousands of innocent children, women and adults and are doing
nothing about it because they get millions in campaighn
contributions. Our elected officials then turn around and spend $200
billion to stop the suffering of Iraqis. I have nothing against
Iraqis but when these elected officials say that I am not patriotic
because I don't support their war, who is the patriot.

Who is allowing hundreds of thousands of Americans to succumb to
death and torture from drug company crimes of humanity because what
we are going thr is torture !! The drug companies, the white house,
congress and senate are allowing violations of the helsinki, geneva
conference, RICO and a host of other laws which are being violated
and it's time the American Public knows the truth.

In the next few months there is going to be websites, petitions and
media campaigns waged against this injustice warning and educating
Americans to the horrors of these fluoroquinolones and as I suffer
in agony everyday, I will do everything i can to make sure that
these crimes do not go unpunished. I want these drug company creeps
to suffer in jail. They must pay for their greed and indifference to
human life and suffering.

Because if we do nothing, this nightmare will just get worse and
worse.

v



18832 From: autumnsboy2000 <autumnsboy2000@y...
Date: Fri May 14, 2004 7:20pm
Subject: Re: What is this?


My last Cipro was 42 weeks ago. I have suffered many problems since
then. Most have subsided. About 2 months after my last flox
(Cipro) I developed severe arthritic-like pain in my hands and I
thought that I would never be able to use them normally again.
Typing and working a mouse became very difficult. This lasted until
about week 30. During that time I did have a few good days and even
possibly a whole week where I had very little pain in my hands. For
the last 12 weeks, my hands have been fairly pain-free.

Things do get better, but it takes time.

18839 From: raghlg <raghlg@a...
Date: Sat May 15, 2004 3:31am
Subject: Factive


NEW DRUG CHECKLIST
FACTIVE (fac-TEEV)
Factive treats lung infections that are caused by bacteria. This
medicine is a fluoroquinolone (floor-oh-KWIN-oh-lone) antibiotic.

GENERIC NAME
Gemifloxacin

WHEN YOU SHOULD NOT USE THIS MEDICINE
You should not use this medicine if you have had an allergic
reaction to gemifloxacin or other quinolone antibiotic medicines
such as ciprofloxacin (Cipro), gatifloxacin (Tequin), levofloxacin
(Levaquin), moxifloxacin (Avelox), norfloxacin (Noroxin), or
ofloxacin (Floxin).



HOW TO USE AND STORE THIS MEDICINE
• Your doctor will tell you how much of this medicine to use and how
often. Do not use more medicine or use it more often than your
doctor tells you to.

• You may take this medicine with or without food. Swallow the
tablet whole. Do not crush, break, or chew it.

• Keep using this medicine for the full treatment time, even if you
feel better after the first few doses. Your infection may not clear
up if you stop using the medicine too soon.

• Drink extra fluids so you will pass more urine while you are using
this medicine. This may help prevent kidney problems.

If you miss a dose:
• If you miss a dose or forget to use your medicine, use it as soon
as you can. If it is almost time for your next dose, wait until then
to use the medicine and skip the missed dose.

• Do not use extra medicine to make up for a missed dose.

STORAGE AND DISPOSAL
• Store the medicine at room temperature in a closed container, away
from heat, moisture, and direct light.

• Ask your pharmacist, doctor, or healthcare giver about the best
way to dispose of any outdated medicine or medicine no longer
needed.

• Keep all medicine away from children, and never share your
medicine with anyone.

DRUGS AND FOODS TO AVOID
• Ask your doctor or pharmacist before using any other medicine,
including over-the-counter medicines, vitamins, and herbal products.

• Make sure your doctor knows if you are also using erythromycin,
probenecid, warfarin, medicine for depression, medicine to treat
abnormal heart rhythm, a phenothiazine medicine, or a steroid.

• Tell your doctor if you are also using antacids that contain
magnesium or aluminum, iron supplements or multivitamins with iron
or zinc, sucralfate, or didanosine powder or chewable/buffered
tablets. You must take these medicines at least three hours before
or two hours after you take gemifloxacin.

WARNINGS
• Make sure your doctor knows if you are pregnant or breast-feeding,
or if you have kidney disease, liver disease, heart disease, heart
rhythm problems, or low potassium or low magnesium levels in your
blood.

• Make sure your doctor knows if you are receiving dialysis or if
you have a history of seizures (epilepsy).

• Rarely, antibiotic medicines may cause severe diarrhea. Call your
doctor right away if you have severe diarrhea while using this
medicine or soon after you stop using it. Do not take anything to
stop the diarrhea unless your doctor tells you to.

• This medicine may make your skin more sensitive to sunlight. Use a
sunscreen when you are outdoors. Avoid sunlamps and tanning beds.

• This medicine may make you dizzy. Avoid driving, using machines,
or doing anything that could be dangerous if you are not alert.

SIDE EFFECTS
Call your doctor right away if you have any of these side effects:

• Allergic reaction: Itching or hives, swelling in your face or
hands, swelling or tingling in your mouth or throat, chest
tightness, trouble breathing

• Blistering, peeling, or red skin rash

• Fast, pounding, or uneven heartbeat, or lightheadedness or
fainting

• Seizures, or a feeling of shakiness, restlessness, or nervousness

• Swelling or sudden pain in your shoulder, elbow, hand, wrist, or
in the back of your knee or ankle

• Unexplained fever

• Unusual bleeding or bruising, or if your skin or eyes turn yellow

IF YOU HAVE OTHER SIDE EFFECTS THAT YOU THINK ARE CAUSED BY THIS
MEDICINE, TELL YOUR DOCTOR.

The preceding information has been made available courtesy of the
UltiMedex™ Integration Services division of Micromedex, Inc. In
addition to providing an extensive set of drug information and
disease management leaflets for integration into clinical practice
management systems, UltiMedex offers patient-specific dosing,
medication advisory screening (DUR), and access to world-renowned
drug and acute care knowledge bases. To learn more about how this
information can be directly integrated into your system, please
contact your system vendor or call Micromedex at (800) 525-9083.


18840 From: raghlg <raghlg@a...
Date: Sat May 15, 2004 3:34am
Subject: Factive #2 article


Rx CARE
New fluoroquinolone has dual activity against resistant bugs
Physicians will soon have a fourth-generation fluoroquinolone with
dual activity against bacteria to treat community-acquired
respiratory infections. The Food & Drug Administration recently
approved gemifloxacin (Factive, GeneSoft Pharmaceuticals) for the
treatment of acute exacerbations of chronic bronchitis (AECB) caused
by Streptococcus pneumoniae, Haemophilus influenzae, H.
parainfluenzae, or Moraxella catarrhalis and community-acquired
pneumonia (CAP) of mild to moderate severity caused by S. pneumoniae
(including penicillin-resistant strains), H. influenzae, M.
catarrhalis, Mycoplasma pneumoniae, Chlamydia pneumoniae, or
Klebsiella pneumoniae. Gemifloxacin will be available in pharmacies
by the end of the year.

Gemifloxacin inhibits DNA synthesis through the inhibition of DNA
gyrase and topoisomerase IV. This dual activity gives the drug more
potency compared with the other fluoroquinolones, which may be why
it has better activity against some microbes, said Gary Smith,
Pharm.D., professor, Department of Pharmacy Practice and Science,
University of Maryland School of Pharmacy, Baltimore.

According to the manufacturer, S. pneumoniae with mutations in both
DNA gyrase and topoisomerase IV (referred to as double mutants) are
resistant to most fluoroquinolones. Gemifloxacin inhibits both
enzyme systems at therapeutically relevant drug levels in S.
pneumoniae and has minimal inhibitory concentration values that are
still in the susceptible range for some double mutants. In vitro lab
data show that gemifloxacin is 30 times more active against
penicillin-resistant S. pneumoniae compared with ciprofloxacin
(Cipro, Bayer) and four to eight times more active compared with
moxifloxacin (Avelox, Bayer), Smith said.

Unlike other fluoroquinolones, gemifloxacin has limited activity
against anaerobic bacteria, said B. Joseph Guglielmo, Pharm.D.,
professor and vice-chair, Department of Clinical Pharmacy,
University of California, San Francisco School of Pharmacy.

The labeling for gemifloxacin includes a bold-faced warning that the
safety and efficacy of the drug have not been established in
children, adolescents under the age of 18 years, and pregnant or
lactating women. Guglielmo and Smith recommended that the drug not
be used in these populations. The warning also states that
gemifloxacin should be avoided in persons with a history of
prolongation of the QTc interval or untreated electrolyte disorders,
such as hypokalemia or hypomagnesemia, and in those who are taking
class IA or class III antiarrhythmic agents, because it may prolong
the QT interval in some patients.

Guglielmo and Smith said that gemifloxacin therapy is associated
with a higher incidence of skin rashes compared with other
fluoroquinolones. In clinical trials, the rash was more common in
persons under the age of 40 years, particularly women and
postmenopausal women taking hormone replacement therapy. The rash
was generally mild to moderate in nature. The incidence of rash was
also increased in persons taking gemifloxacin for more than seven
days.

GeneSoft Pharmaceuticals said that multivalent cations significantly
reduce the systemic availability of gemifloxacin. The company
recommends that patients take aluminum- and/or magnesium-containing
antacids, ferrous sulfate, or multivitamins containing zinc or other
metal cations no less than three hours before or two hours after
taking gemifloxacin. Proton pump inhibitors and H2-antagonists can
be taken concurrently with gemifloxacin, however, said Smith.
Patients should take gemifloxacin at least two hours before taking
sucralfate.

The recommended dose of gemifloxacin is one 320-mg tablet swallowed
whole with copious quantities of liquids. The recommended duration
of treatment is five days for patients with AECB and seven days for
patients with CAP. For patients with a creatinine clearance equal to
40 ml/min, the dose is 160 mg every 24 hours. Gemifloxacin can be
taken with or without food.

Charlotte LoBuono


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

TIPS TO REMEMBER: Factive
In clinical trials, common side effects associated with Factive
therapy (in addition to skin rashes) were diarrhea, nausea, and
headache.
Factive therapy is associated with tendonitis and tendon rupture. If
patients taking the drug experience pain, swelling, or tendon
rupture, they should stop taking the drug and notify their
healthcare professional immediately.
Factive therapy is associated with phototoxicity. Patients should
not use a tanning bed and should wear protective clothing and use
sunscreen while taking the drug.
Factive does not interact with the cytochrome P-450 enzyme system,
so it does not cause the drug-drug interactions seen with other
antibiotics such as the macrolides.



18842 From: <kings1978@y...
Date: Sat May 15, 2004 3:44am
Subject: Re: Factive
QUOTE

IF YOU HAVE OTHER SIDE EFFECTS THAT YOU THINK ARE CAUSED BY THIS
MEDICINE, TELL YOUR DOCTOR.

UNQUOTE

Yes, tell him, so the mo' fo' can deny deny deny deny deny it's the
gemifloxacin, then tell you you're crazy and prescribe a second drug
without even checking to see if it's contra-indicated with
Gemifloxacin.




18860 From: quinedout <quinedout@a...
Date: Sat May 15, 2004 8:32pm
Subject: black box warning on quinolones


Rx Care
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."


18861 From: quinedout <quinedout@a...
Date: Sat May 15, 2004 8:33pm
Subject:

Fluoroquinolones to add warning on tendon ruptures
By Michael F. Conlan

Five makers of fluoroquinolones have agreed to add warnings in their
labeling of the risk of possible Achilles and other tendon
inflammation and rupture. The Food & Drug Administration has been
aware of the potential problems with the antibiotics for more than a
year, based on 25 reported cases of tendon rupture. Some 14 million
fluoroquinolone antibiotic prescriptions were dispensed in 1995.

The drugs affected are Cipro (ciprofloxacin, Bayer Corp.); Floxin
(ofloxacin, McNeil Pharmaceutical); Maxaquin (lomefloxacin, G.D.
Searle & Co.); Noroxin (norfloxacin, Roberts Pharmaceutical Corp.);
and Penetrex (enoxacin, Rhone-Poulenc Rorer Pharmaceuticals Inc.).

That the additional warnings had been agreed to in June was
disclosed following the filing of a petition earlier this month by
Public Citizen's Health Research Group. The advocacy group requested
a bold warning on tendinitis and rupture, a patient package insert,
and a letter to health-care professionals alerting them to possible
problems.

"Doctors and the public must be warned to immediately discontinue
use of fluoroquinolone antibiotics at the first sign of tendon
pain," said Sidney Wolfe, director of the Health Research
Group. "With reported cases of Achilles tendon rupture, often
requiring surgical repair, it is essential to let people know that
prompt cessation of use at the onset of unusual pain can stop the
progression to more tendon damage and rupture."


18862 From: quinedout <quinedout@a...
Date: Sat May 15, 2004 8:42pm
Subject: bayer - dear doctor letter sent to veterinarians


Dear Doctor
letter that Bayer sent to veterinarians that its veterinary
equivalent to Cipro can cause blindness, partial blindness, etc.



Bayer
Agriculture Division

Animal Health
Bayer Corporation
P.O. Box 390
Shawnee Mission, KS
66201-0390
Phone: 913 268-2000

July 6, 2000

Dear Doctor,

Baytril® (enrofloxacin), the first fluoroquinolone developed by
Bayer
specifically for veterinary use, has been approved for the treatment
of bacterial infections in dogs and cats in the United States since
1989 and 1990, respectively. Prior to FDA approval in 1989, Baytril
underwent mandatory toxicological testing in dogs and cats. Pre-
approval target animal safety studies in both dogs and cats
demonstrated safety at 25 mg/kg/day x 30 days.

Bayer Animal Health has received sporadic but an increasing number
of
reports concerning altered vision in feline patients treated with
Baytril Tablets and/or Baytril Injectable. (Baytril Injectable is
only approved for use in dogs.) These reports, while uncommon,
include blindness, temporary blindness, partial blindness, and
mydriasis. Bayer Animal Health estimates that the incidence of
vision
related reports over the past decade in the U.S. is 0.0008%, or 1
report per 122,414 feline patients treated. The increase in the
number of reports appears to be temporally associated with the July
1997 label change for the oral dosage form from a point dose
administration of 2.5 mg/kg bid to the flexible dose administration
of 5-20 mg/kg as a single dose or two equally divided doses.

Bayer is taking a number of actions to thoroughly investigate the
relationship. [YEAH RIGHT, ITS CALLED COVERING YOUR TRACKS}. As you
are aware, there are many causes of acute vision loss in cats.
[DIVERSIONALRY TACTICS]. Bayer has enlisted the input and expertise
from a panel of veterinary ophthalmologists of the American College
of Veterinary Ophthalmology (ACVO) regarding the best means to
objectively investigate this matter. [PAID PIMPS TO REPORT WHAT A
WONDERFUL AND IMPORTANT DRUG BAYER MAKES, AND THEN REPORT THAT THE
INCIDENTS OF ADVERSE REACTIONS TO BAYTRIL I SIMILAR TO OTHER
ANTIBIOTICS - AND CONVENIENTLY FAIL TO REPORT THAT THE SEVERITY OF
THE ADR's IS MUCH WORSE]. On behalf of Bayer Animal Health, we want
to ensure you have accurate information on Baytril for the benefit
of
your practice and your patients.

As a result of our discussions with the ophthalmologists, a specific
feline safety study designed to assess any potential effects of
Baytril on ocular parameters is underway. This study is being
conducted with dosages both within and well above the label dose
range by board certified veterinary ophthalmologists. Retinal
histopathology will be performed at the conclusion of the study.
Upon
completion of the study, we will communicate the final results to
you. However, preliminary results suggest dose related ocular
effects. The most severe observations are in cats dosed at 50
mg/kg/day (2.5x the high-end of the approved dose range) and
developed within one week. No changes have been observed in cats
dosed at 5 mg/kg/day (the lower end of the approved dose range).
Therefore, at this time, we strongly recommend to restrict the use
of
Baytril Tablets in cats at a dose not to exceed 5 mg/kg/day.

Again, Baytril® (enrofloxacin) Injectable has only been approved for
use in dogs. Discussion with your clients of potential side effects
of any medication is always encouraged. We recommend you include in
this discussion the potential for possible effects on the retina in
cats treated with Baytril.

Bayer is thoroughly documenting and monitoring all reported cases in
order to collect as much salient information as possible. To that
end, we ask that any suspected case be reported directly to us. As a
responsible manufacturer of drugs for animals and humans, Bayer
cares
greatly about the safety of all its products and the well being of
your patients.

We will continue to provide pertinent information to you and support
your commitment to provide quality veterinary care. Please direct
any
questions about Baytril or any of the Bayer products to Bayer
Veterinary Services, 800-422-9874.


/s/

Erin Evans, DVM
Director, Veterinary Services
Bayer Corporation


18863 From: raghlg <raghlg@a...
Date: Sat May 15, 2004 8:47pm
Subject: Vigamox


Rx CARE
New ophthalmic has broad antibacterial coverage
Clinicians will soon be able to treat conjunctivitis using a fourth-
generation topical fluoroquinolone. This one has better activity
against gram-positive organisms compared with currently available
fluoroquinolones and higher concentration than the other drugs in
this class (except one). The drug is moxifloxacin (Vigamox, Alcon)
0.5% ophthalmic solution for the treatment of bacterial
conjunctivitis. It should be available in pharmacies in the next
several weeks.

Francis Mah, M.D., assistant professor, department of ophthalmology,
University of Pittsburgh Medical Center Eye & Ear Institute, said
that moxifloxacin ophthalmic solution inhibits topoisomerase IV and
DNA gyrase with equal affinity. Previous generations of
fluoroquinolones have a better affinity for DNA gyrase compared with
topoisomerase IV, he noted.

Clinically, the affinity of moxifloxacin for topoisomerase IV gives
the compound better activity against gram-positive organisms than
previous generations of fluoroquinolones. Topoisomerase IV is
important for the growth of gram-positive organisms such as
Streptococcus and Staphylococcus, which cause 80% of ophthalmic
infections, explained Mah, who is also co-medical director of the
Charles T. Campbell Ophthalmic Microbiology Laboratory at the
University of Pittsburgh Medical Center.

Moxifloxacin ophthalmic solution hinders the development of
bacterial resistance to the drug in two ways, Mah said. Bacteria
must have mutations at both sites of activity to be resistant to
moxifloxacin, whereas they require just one mutation at the DNA
gyrase site to be resistant to the older fluoroquinolones. In
addition, changes were made to the moxifloxacin molecule at the 8-
carbon of its methoxy group. These modifications inhibit the ability
of bacteria to efflux the drug out of the cell, so that one
mechanism of resistance, the efflux pump, is negated, he said.

At 0.5% concentration in solution, moxifloxacin has a higher
concentration than the other topical fluoroquinolones, with the
exception of levofloxacin (Quixin, Santen) 0.5% ophthalmic solution,
said David Ritterband, M.D., clinical associate professor of
ophthalmology, New York Medical College, Valhalla. Moxifloxacin
offers good solubility, so it thoroughly penetrates the ocular
tissue.

Moxifloxacin does not contain the preservative benzalkonium
chloride; thus, it will not irritate the corneal surface and cause
it to break down over time, said Ritterband. He is also assistant
director of the corneal and refractive surgery service at the New
York Eye & Ear Infirmary in New York City. Moxifloxacin has a near
neutral pH, so it is gentler to the eye and less likely to sting
when instilled, he added.

Mah mentioned that this is particularly important for patients using
multiple topical agents. He went on to point out that this is the
first topical antibiotic that is dosed three times per day and does
not require a loading dose. The recommended dosing schedule for
moxifloxacin ophthalmic solution is three times per day for seven
days. This convenient dosing schedule may lead to better patient
compliance, particularly among children and neonates, he noted.

Ritterband said that although the Food & Drug Administration
approved a moxifloxacin regimen lasting for seven days, the drug was
found to be successful in trials enrolling persons with
conjunctivitis and lasting for only four days. Moxifloxacin was
instilled four times per day in these trials.

Ritterband said that some clinicians might prescribe the drug for
only four days, which could lead to improved compliance. Other drugs
for conjunctivitis are approved for use in a seven-day regimen, he
said.

Although the safety and efficacy of moxifloxacin ophthalmic solution
have not been established in infants younger than one year, Mah said
he feels the drug has an off-label use for the treatment of
ophthalmia neonatorum. Moxifloxacin has activity against organisms
that often cause this condition, including Chlamydia trachomatis and
Neisseria gonorrhoeae. He also said that no toxicity was observed in
clinical trials of moxifloxacin in infants less than one year of
age.

Charlotte LoBuono
18866 From: Justin <jjmg@a...
Date: Sun May 16, 2004 2:23am
Subject: Re: Abnormal blood tests


I had the same hopes as you did when I was first floxed in July 2003,
10 months ago.

Personally, I doubt that our problems have anything to do with the
drugs still being in our systems. As for what causes the symptoms
and why they go through up-and-down cycles, absolutely nobody knows.
Lots of theories are out there but no hard science.

In my own personal experience, I have had several cycles. My
absolute peak (so far) in terms of worst neuropathies -- meaning in
the sense of the most severe neuropathies, the longest-persisting
neuropathies, and neuropathies in the most areas -- was in the period
from late December through the end of April or so. In other words,
my worst symptoms so far were in my 6th through my 9th month. I am
certainly not the only person to have this experience. Cycling is
one of the most distinctive hallmarks of the "flox" experience, and I
did notice more than one person in the forum before me had peaked in
around the same time period. By the way it wasn't just the worst
peripheral neuropathies during that period but also the worst tendon
pain. Both are in (relative) remission for me now, although many
symptoms remain, including the severe tinnitus, painful sensitivity
to loud noise and bright light, other visual disturbances including a
massive increase in floaters that I notice pretty much all the time,
including when I read, the charming "head pressure" sensation, and
others. On the whole, though, I am doing much much better than I was
just a month ago.

Of course I'm hoping that my last peak was THE peak and that it's
going to be getting better from here. From the experiences others
have reported I am expecting to have more cycles, more ups and downs,
but my hope is that each successive cycle will be milder, and not
worse, but until the next cycle hits, I won't know.

- Justin




18872 From: Julie <jaa0317@y...
Date: Sun May 16, 2004 3:18pm
Subject: Pain Medications and other questions


Hi,
I havent posted in awhile.
Pretty much have my stuff under control but do seem to have cycles
now and then.
I'm dealing with something right now that I don't know if it's
related or not. But need some guidance from those who have to take
pain medication on what I can take and what I can't take.
Along with being a victim of this lovely med (levaquin) I also have
two other nuerological problems that I had before I was floxed.
One being Psuedo Tumor Cerebri ( basically it's a swelling of the
optic nerve. I've been diagnoised with this since the age of 16 and
pretty much symptom free that was until recently starting with
headaches again. And also another disorder called Charcot Marie
Tooth. Which is a Nuerological disorder which effects the muscles and
nerves mainly in the legs.
I recently (tuesday) had to have a spinal tap done because I was
starting to get headaches again and one of hte meds they put me on
Diamox was causing numbness and tingling in the fingers and the
nuerologist wanted to check my spinal fluid readings to see how high
they were. Well just my luck I ended up with a low pressure headache
after the spinal tap which lasted from Tuesday till friday. On friday
they sent me in for a blood patch. Basically take blood from arm and
inject it back in the spinal tap site to stop the spinal tap leak I
seemed to have developed. I'm plain scared now that I have had this
done. I spent almost a week flat on my back trying to avoid the
headaches and not have to take anything for them. I did end up having
to use some ibuprofen and also darvocet. Both which seemed to cause
muscle twicthing in the arms and legs.
Are there any pain medications when these headaches start I can take.
I'm so afraid to take anything after the levaquin. Also a little
concerned now that i have had blood injected into my spinal space
wether this is now going to create more problems. Since about 10
minutes after the blood patch I have been headache free. But today
it's over cast and rainy and feel headachy but I really really don't
want to take anything. But I have that funny fuzzy feeling in my head
and I hate it.
Any suggestions or advice is welcomed.
Thanks
Julie
18878 From: unitedvisions2003 <unitedvisions@g...
Date: Mon May 17, 2004 7:05pm
Subject: CIPRO-for kids-approved!!!

Dear all

I don't know what we are doing wrong.
But Cipro has received FDA-approval for pediatrics(1-17 years)
for complicated UTI and phylonephritis.

STOP THIS INSANE EXPERIMENT ON HELPLESS AND INNOCENT CHILDREN.

History is repeating itself. Are we in for another Holocaust and other obnoxious atrocities
against mankind?

I'm absolutely speechless.

God bless these children.

Source: check out the most recent CIPRO-label

Mark
18879 From: jeanhanna212 <jeanhanna212@y...
Date: Mon May 17, 2004 8:03pm
Subject: Anybody else with back problems???


Does anybody else have back problems from being floxed? My whole
spine feels like it is burning from top to bottom. It is a constant
pain that won't go away.... This was actually my first symptom then
came the blurry vision and numbness.


18880 From: carolhorton12 <carolthorton@a...
Date: Mon May 17, 2004 9:00pm
Subject: Re: Pain Medications and other questions


Hi Julie -
I, too, am a levaquin victim - ruptured both achilles tendons back
last November. I still have some pain in my ankles, although they
did surgery to reconnect them and also have a lot of pain in my
shoulders which I believe was exacerbated by the levaquin. Anyhow, I
take quite a bit of ibuprofen (2 pills a couple of times a day) when
I'm hurting, and it seems to help and I've had no bad effects that I
know of. I think we can all become somewhat obsessed about being
afraid to take any drugs - if you listen to all the horror stories
surrounding all of us every day, we'd probably even be afraid to
eat. And that isn't good. So onwards and upwards - just use your
good sense, and if ibuprofen helps your pain then I would take it!

Carol




18881 From: chiggins1066 <chiggins1066@y...
Date: Tue May 18, 2004 1:14pm
Subject: Another update -and I need advice


Good news and bad news. I will start with the good.

Physical therapy, theraputic massage, hot bath and dietary
modification seem to be helping my hands and elbows (after being
floxed I was diagnosed with bilateral ulnar neuritis, carpal tunnel
syndrome, and tendinitis in my wrists). The strength in my grip has
improved 35%, paresthesias are down 95%, and so is skin irritation.

Now the bad. I went to my ENT yesterday (the guy who gave me the
Avelox), and he said I still have some bacteria in my sinuses. He
gave me Medrol (Prednisone) and Augmentin to take. I do NOT want to
go back on Prednisone! Is there any other way to reduce the sinus
inflammation?
He also told me "I spoke with the pharmacy rep, and he says he has
never heard of any of the adverse reactions you have described. The
rash doesn't make any sense. Nor does the nerve damage." In other
words, he is telling me i'm full of sh**. So I left there thinking I
had Lupus.

I've been getting a lot of muscle twitching in my legs. Can anyone
relate? Not painful, just annoying. Perhaps stress/anxiety related?

I'm now having trouble determing what symptoms are a result of being
floxed, and what are bi-products of severe anxiety.



18883 From: <mcorey1234@a...
Date: Tue May 18, 2004 9:55am
Subject: Re: Another update -and I need advice

I've been getting a lot of muscle twitching in my legs. Can anyone
relate? Not painful, just annoying. Perhaps stress/anxiety related?

I surely can relate, after being Floxed 18 months ago. I had wild muscle
twitches, and profound achilles tendinitis, both from the drug Floxin. Magnesium
helps always, so rely on it.

Here are two things that always make me WORSE: Coenzyme Q10 and also any form
of GABA, which is the inhibitory neurotransmitter that's supposed to make
people calmer. However, the quinolones target the GABA receptors in the brain,
and I believe that they damage these receptors. I can make my achilles
tendinitis ten times worse by taking any form of GABA, or even Neurontin, which is
based on the same thing.

Has anyone else out there experienced an adverse reaction to GABA, Neurontin,
or to CoQ10? I believe that the quinolone induced damage to the GABA
receptors in my brain are responsible for the twitching of muscles and also for the
achilles tendinitis. The question is this: how does one reverse, or
effectively treat, damaged GABA receptors?

mc



18888 From: chiggins1066 <chiggins1066@y...
Date: Tue May 18, 2004 4:52pm
Subject: Re: Another update -and I need advice

Well I got my blood tests in order.

The neurologist took 12 blood tests, ruling out everything from Lupus
to Diabetes, to a thyroid disorder.

My GP took 3 CPK enzyme tests. CPK 3 came back elevated (musclular
skelital), but has since returned to normal.

So I've had 15 blood tests and an EMG. The EMG revealed bilateral
ulnar neuritis (nerve inflammation in the elbows) and carpal tunnel
syndrome, along with possible tendinitis in the wrists. I'm having
another EMG done on my legs on Thursday.

More and more, it is looking like the quinolones, or a remote
possiblity of MS or Guillian-Barre. I doubt it is either of those,
since I don't have many of the typical MS symptoms, nor does it run
in my family. Guillian-Barre is usually more severe.

We WILL hold the pharmacutical corporations accountable for this!
I'm just gathering my ammunition!




18893 From: spyrodas <spyrodas@y...
Date: Thu May 20, 2004 9:26am
Subject: augmentin instead of quinolones


Hi,
I had a bad reaction to cipro, two and a half years ago. The same
adverse reactions that are well described in this group. After a year
i succeeded to recover.
I was prescribed augmantin by an urologist
I want to know if this medicine is safer than quinolones for treating
prostatitis

Has anyone experienced side effects from this medicine

thanks


18894 From: charlie_horse15705 <charlie_horse15705@y...
Date: Thu May 20, 2004 2:56pm
Subject: cipro side effects

fascinating yet depressing to read about all these stories here.
Found this site today and am very grateful. Let me share my current
story and see if anyone can confirm the connection with Cipro, for
which I would be most grateful.

Back in December had testicular pain which one doctor diagnosed as
epididymitis. Gave me Cipro for 10 days. After 5 days of no relief
went to urologist who gave me Doxy to take 10 days after cipro
ended. Went away. Epididymitis or what I thought was such came back
at end of April. Spoke doctor on phone and without seeing me (to be
honest probably because I told him on the phone that I thought
epididymitis had returned)prescribed doxy for 10 days (as that had
seemed to work before). When it didnt clear up, was examined by
another doctor in the practice who put me on cipro for 30 days.
Within a week I had a yeast infection (which I treated myself)and a
few days later swollen glands. I also had developed a aching back
and muscular discomfort in lower left back and left thigh. Any
thoughts about this connection would be greatly appreciated.

Chris



18899 From: John Edward Roe <angelbab@s...
Date: Thu May 20, 2004 9:32pm
Subject: Re: Re: augmentin instead of quinolones


Hi, I too am a victim of levaquin and cipro and the ADRs that go along with them...achilles tendon tearing, also shoulder tearing requiring surgery, and so forth. And, I had a respiratory infection in December, was given a Z-pack, and within 48 hours following the pack, I began swelling and having a reaction to it. I was going to P.T. for my achilles tendons-had been in air casts since last August, and also working on my shoulder, when on Friday began the Z-pack, then, on Monday went back to the P.T. after feeling worse and swelling, etc. - the P.T. as well as my orthopedic physician both could not believe their eyes and how that my progress that we had made since Sept. was almost all for nothing! My general doctor, once I reported it to her, (and she believes that I have had adverse reactions to quinolones, and since has done research on it, and cautions everyone she prescribes them for to be so careful), stated that there should be nothing in the Z-pack to cause those kinds of
flare ups that I had....still I had them, so I am most likely not going to take a Z-pack again. Am now just finishing a 10 day course of Keflex-for you guessed it, another respiratory infection caught from my fellow co workers who had it and brought it into the office to pass around, so when I first came down with it, a week ago Tuesday, I could hardly get out of bed that morning. My husband had to help me and it was back to the cane again on the way to the doctor's office. So, I fear that those of us who have been permanently damaged by the quinolones, are going to have a lifetime of problems. My general doctor worries because as she says, one day I might come down with something that might kill me because there is so little that she can prescribe for me to help me fight off infections. Pleasant thought, isn't it? Anyway, don't mean to discourage you...just be careful what you take, and make sure your doctor knows everything there is to know in order to help you! NR


18900 From: Brian Hickey <brian.hickey@v...
Date: Thu May 20, 2004 9:48pm
Subject: Re: Re: augmentin instead of quinolones


What does it feel like to tear your shoulder and achilles??? I am
having pain with both of them. Thanks


18901 From: chiggins1066 <chiggins1066@y...
Date: Thu May 20, 2004 10:00pm
Subject: Getting to the bottom of it all...


I think I'm beginning to understand what's going on.

The quinolones cause tendon inflammation at the joints (one of the many side effects). This in turn, compresses the nerves in those areas; ankles, elbows, wrists, shoulders. A kind of "compression neuropathy".

After 15 blood tests, 3 EMGs, and several physical exams, my neurologist and a rheumatologist BOTH concluded that the Avelox and Levaquin were the source of the nerve damage, but tests indicated that it was NOT a generalized neuropathy (peripheral neuropathy). The nerve damage was specific to the bottom of my feet, elbows, and wrists (bilateral ulnar neuritis, carpal tunnel, etc.)

My neurologist actually researched the problem, and read Dr. Cohen's article (along with some others). My ENT dismissed me entirely.

Don't assume a peripheral neuropathy. Chances are, it is localized. Look to the tendons, and that is where the problems originate. My nerve issues started every time I did some strenuous exercise or physical movement (weight lifting, running). The muscle and tendon pain would go away, but the nerve issues would remain, since the nerves become damaged and grow back at a millimeter a day.

Keep the pressure on your doctors. Print out research and show it to them. Challenge them to make a different diagnosis. Ultimately, diagnosis through exclusion will point to the quinolones.



18904 From: Vonnie Burr <vonnie@m...
Date: Fri May 21, 2004 2:13am
Subject: Rocky Mountain Area Neurologist

All:

Today my father, mother and I met with my father’s Rocky Mountain
neurologist specialist. He is an astounding physician. He spent over
an hour with us. He was cordial, kind and understanding. This facility
is so receptive to people with illnesses that they offer free valet
parking!!!

As it turns out, this doctor IS NOT an expert in FQ disorders. He is
simply an outstanding physician. And he had no difficulty relating my
father’s ADRs to the Levaquin prescribed in January.

While there appears to be no help but continued therapy for my father,
there may be hope for some of you. I specifically discussed with him
the group, and this Dr. advised that he would be willing to accept
regional referrals from other docs for those of you who have
neurological problems. He further advised those of you NOT in the rocky
mountain region should see if you can get a referral to your closest
medical school.

My parents are content with and resolved to the diagnosis. This doc was
not cut from the normal cloth. He really is special in terms of his
bedside manner.

If any of you in the rocky mountain region wish to consider a referral,
please let me know.

Vonnie





18905 From: mls0618 <mls0618@y...
Date: Fri May 21, 2004 4:37am
Subject: help with healing


I wanted to thank Kristine for her encouragement in getting better.
I was given cipro hc otic Ear drop on top of my big toe after nail
surgery to prevent infection. I have had many of the neurological
symptoms, taste perversion, ringing in the ears, and I have great
pain and difficulty walking on both of my feet even with orthodists
that were made for me.

I have been to countless neurologists, rheumatologists, internists,
podietrists, orthopedists, physical therapists, and a homeopathic
doctor. I am greatful that my pharmasist showed me the article in
the annals of pharmacology about quinolones. Since then I was lucky
enough to be lead to this website.

I read tonight the letter to the newbies in the fqvictim.org and it
got me very upset because it took away my hope of getting better.
Thank you kristine for saying that you are getting better. It really
helps me to believe that this nightmare could possibly end. I have
two great kids and a wonderful husband and my life and their lives
have changed drastically. For their sake, I need to get myself
better. It is becoming more and more difficult to maintain a steady
household which they could flourish. I already had to give up a
great career.

Could you please be specific, anyone and tell me ways to get better.
Food, physical therapies, doctors that know what we are talking about.
I am so confused, everyone says contradictory information.

I live in Philadelphia, but would go anywhere to get help. Names of
Doctors? Thanks to everyone who writes on this website trying to help


I have tried va


18906 From: Rachelle Golub <golubshelli@y...
Date: Fri May 21, 2004 2:18pm
Subject: PLEASE someone HELP!!!!


I was hoping to see some response to this also. I have suffered for
OVER a year - burning all over my body, skin crawling like ants all
over me, spasmodic "electric shock" sensations, varying stages of
redness, sensitivity to touch, to heat, to cold. Can't even take a
shower in comfort anymore. My doctor "hit" me with REPEATED doses of
FQ's to "cure" fibromyalgia (the most recent only one month ago!)
BEFORE I even knew that FQ's could be CAUSING the problem. The
dermatolgist said not her problem, the allergist said not his
problem, the neurologist did some kind of tests and said not his
problem, pain management doctors prescribe opiates (NOT for me
anymore!), etc. Finally the Cleveland Clinic is trying lidocaine via
IV once a week to cure the unbearable burning. After the first
treatment I looked like a cooked lobster. No relief, but dr wants me
to try again next week. I can't live like this, and I can't go back
on strong pain meds (was detoxed in january after a pain dr put me on
so much fentanyl I could no longer function).

Please - has someone found something that will help. I'm only 44
years old - can't work anymore - this is impacting my relationship
with my girlfriend. I live in South Florida and will go ANYWHERE to
find some relief!!!!


18907 From: <SRo2930269@a...
Date: Fri May 21, 2004 0:40pm
Subject: Re: PLEASE someone HELP!!!!

So sorry to hear your story. After 18 months post-flox, I have daily
"manageable" electrical sensations mainly in leg calfs and hands/feet. These are
symptoms of parathesis. There is no pain with mine....just annoying tingling most
of the time! Hang in there and consider nutritional supplementation/diet
regime. Shybasset

18908 From: Rachelle Golub <golubshelli@y...
Date: Fri May 21, 2004 5:58pm
Subject: Re: PLEASE someone HELP!!!!


thanks to all of you that have responded. yes, the dr i went to is
on the "good dr" list for fibromyalgia and STRONGLY feels that fm is
due to a virus and thus can be cured by massive repeated doses of
fq's. i do believe he means well, but he failed completely to really
listen to all the side affects i was complaining about month after
month after month and did not alert me to the fact that the fq's may,
in themselves, be the cause. now, 12 months later, the pain is 24
hours a day, nutritional supplements do nothing, i can not go
outside, shower daily and sometimes i can not even dress in more than
a t-shirt and shorts. i am on 1800 mg of neurontin, clonzapam (for
the stress) and ambien to try and get what little sleep i can. i
pray that the lidocaine iv therapy will help - the first treatment
did nothing but turn me redder!





18917 From: <WAlakhdar@a...
Date: Sat May 22, 2004 11:38am
Subject: Re: A warning

18920 From: <sweet1956pea@a...
Date: Sat May 22, 2004 0:35pm
Subject: shoulders vs. achilles tendon


My major joint problems have been my shoulders (bilaterally) and the hip
(inguinal) bilaterally. Of course, pretty much all the joints, but those places
significantly worse than the others.

Have a wonderful day.

Patti


18922 From: seagalaxy <linmarsta@m...
Date: Sat May 22, 2004 11:06pm
Subject: Re: PLEASE someone HELP!!!!


--Rachelle-- this is of course peripheral neuropathy, nerve damage,
which Cipro lit FINALLY has an adde warning on admitting it happens.
Your letter really brought back some horrible memories for me-- I
had the horrendous burning as well for many months-- and mine
began most significantly way after I had finishsed the Levaquin I
took, so it is BS for them to say "Discontinue at the first sign of
PN..."
--- how the hell could I have known???
In my opinion, we all go through similar stages looking for help,
getting more and more desperate because the pain is so bad. First we
think there must be a pill to counteract it (like Medrol-- and of
course there is not, they only make it worse.) Then we turn
to "natural
alternatives" which if not approached with a healthy amount of
skepticism, can also make things worse. Even food made me react
worse when I had the PN. I can tell you all the things I tried but I
can't for sure tell you any of them made much difference. I did not
try additional Rx drugs at all, though believe me the pain is so
intense I can understand the need to at least try painkillers.
You just want to crawl out of your own skin.
I have recovered, which is mainly what I wanted to tell you. There
are no guarantees, we are all different, but wanted you to know I
also suffered for more thn a year and did recover.
I wish you all the best
linda
I have suffered for
OVER a year - burning all over my body, skin crawling like ants
all
over me, spasmodic "electric shock" sensations, varying stages of
redness, sensitivity to touch, to heat, to cold. Can't even take
a
shower in comfort anymore.


18925 From: JLese <frekkie@e...
Date: Sun May 23, 2004 5:58pm
Subject: Re: Re: related media alert

Several of the military with Lariam toxicity also took Cipro. Unfortunately, lots of people seem to take Cipro and Lariam at the same time! Travel clinics like to give Cipro to people going on safari or to the Far East to combat travelers diarrhea. (Any FQ sufferers willing to trade diarrhea for what you are going through?)

We tell Lariam sufferers to avoid fluoroquinolone antibiotics and to ask for another class of antibiotics. I know of two medical references that state that FQs and Lariam should not be taken together. One of them is an old report from WHO (1989 or 1991 -- have to check), the other is a recent paper from Croft/Herxheimer that offers some interesting speculations, but is not a study with data to back it up. Dave, Beth, are you aware of any more?

jeanne lese

18926 From: annebeardsley <annebeard@a...
Date: Sun May 23, 2004 6:41pm
Subject: Cycling?

I'm looking for clarification re the concept of "cycling".
Now into my 8th week of ADRs, I can't determine any kind of pattern
in either the symptoms that affect me, their severity or frequency.
It all seems rather random: one day the symptoms are less, one day
more, some symptoms may appear for a day or two and then disappear
(more or less) for a week or two, only to return for another week,
etc. etc. So, without a specific pattern, can one talk of cycling?

I want to thank everyone who takes the time to share not only the
difficult parts of their experience, but also any little forward
movement and sense of healing. I think it's so important not to lose
hope and one's optimism. Whether I'm cycling or not I don't know, but
I am so very grateful whenever the symptoms fade for a while and I
catch a glimmer of life as I would like it to be/become. The fact
that that's happening at all must mean that I'm getting better and
healing is a posibility, as we want it to be for each and everyone.



18928 From: paul_keels <paul_keels@y...
Date: Sun May 23, 2004 10:56pm
Subject: Re: FQ's and Testicular Cancer?

Dear Andy,

I'm terribly sorry it's taken me so long to respond to your post. I
switched to "no mail" status before your note was delivered. I hope by
now that you've received some news from your doctors as to your
diagnosis and treatment.

On the day I was released from the hospital about 150 miles from my
home, I received news that my house had been flooded by a broken
washing machine hose while I was away. My incision also resulted in a
four-inch hematoma, for which I'm being treated with something called a
"Wound-Vac" by home health nurses. Since the house was unlivable, I've
been living and being treated in hotels in two cities for the past
three weeks. I just returned home this weekend, and have only now
checked the forum for messages.

I can only tell you that, though my symptoms were much different, I
would certainly be concerned by the symptoms you describe, and would
follow up immediately with the best medical resources I could find. In
my own case, my testicle enlarged, rather than shrank, and I didn't
experience hair loss until the third week of chemotherapy months later.

The discovery of my malignancy was triggered by a trauma to my testicle
caused by an otherwise seemingly harmless backward fall from which I
landed in a sitting position. Within one week, my left testicle became
markedly swollen and uncomfortable, followed by continued enlargement
and a dead, firm, dense heaviness. Within the second week, I was
diagnosed with testicular cancer, and by the end of week three, my
surgeon had performed a left radical orchiectomy. That surgery was
surprisingly simple, but the retroperitoneal lymph node dissection a
month later was major surgery. An intended nerve-sparing version of
that procedure was a failure, and despite negative biopsies, the
malignancy had apparently already micro-metasticised to an area of the
lymph nodes that were not removed during the first dissection. Three
months later, I was diagnosed with metastatic testicular cancer in the
lymph nodes and left lung, and began chemotherapy several weeks later.

The wonderful news is that my surgery of April 28 was successful!
Biopsies of the residual masses removed from my left lung and lymph
nodes were both negative. They were diagnosed as dead scar tissue of
the original malignant tumors that had already been taken care of
through chemotherapy. My prognosis appears to be excellent, though I'll
be followed closely with monthly bloodwork and chest x-rays and
quarterly to semi-annual ct scans for the first year, decreasing in
frequency each year as long as there is no sign of recurrence.

If you have any further questions, Andy, please address future
correspondence directly to my personal yahoo! address, as I plan to
remain on "no mail" status on this fq forum until I'm more fully
recovered. And please advise me of any news you hear from your doctors.
I'm extremely interested in your situation.

I'll keep you in my thoughts.

Paul


18930 From: spyrodas <spyrodas@y...
Date: Mon May 24, 2004 10:03am
Subject: Re: PLEASE someone HELP!!!!


Rachelle

I am sorry to hear about your experience with fluroquinoles that
caused fibromyalgia. I had the same experience 2 1/2 years ago. At
the bigining I did't know what was going on. After having gone to all
kinds of doctors without having any specific result that something is
wrong with me, I was dignosed with fibromyalgia. The reumatologist
prescribed me antidepresants for better slip and magnesium pills for
pain relief. They helped me a lot and the symptons were 80% gone.
After that I visited a homeopathist and prescribed me some remedies
and now I feel completely cured. I don't know if these will help you
as every person is different, they were good for me.

From what I have read in this forum many users of quinolones have
experienced fibromyalgia's symptoms. The best thing you have to do is
not to take this kind of antibiotic again. The symptons of fibro tent
to reduce as the time goes by. For me it took 1 1/2 year!

I wish you the best, If you have time write me how you feel,

Spyros



18933 From: carolhorton12 <carolthorton@a...
Date: Mon May 24, 2004 4:17pm
Subject: Re: There is hope--3 months later I am almost better
One thing I wanted to tell you was, since about 2 weeks after the
pain in my shoulders started, I started doing absolutely NOTHING
with
my shoulders that would exert them. Fortunately I have a very
supportive husband who picked up the slack at home. I did no
grocery
shopping, no lifting, no cleaning except occassionally the dishes,
and I would basically go to work, go home and get into bed. I
would
drive with my legs when I could on the freeways (except for big
turns!). But I never stopped my walks, even though my shoulders
were
worse afterwards, because I believed it helped my overall health
to
continue them. I have been walking 3-5 hours a week for the past
4
years. Anyway, thank God so far my lower body was never affected--
though I know it could happen in the future. I can only hope it
wont. But having relief from the TERRIBLE pain in my shoulders is
finally pretty well over. It felt like someone was sitting on
them
constantly. Like I said, my left elbow isnt that much better, but
I
also just dont notice it as much because it is an elbow.

I did take Celebrex for 1 full week and by the end of the week, I
felt no pain! But I stopped it because my stomach bothered me and
I
do drink about 6-7 alcohol drinks a week, which I did not want to
have to quit because of the celebrex. Anyway, a month ago I felt
like there was no light at the end of the tunnel, but feel much
better now.

I also noticed some posts lately of others who have had problems
with
their shoulders. All the docs usually say it affects the
achillies
tendon.

Jenny - you give me great hope! Levaquin ruptured both my achilles
tendons which were re-attached by surgery and are now rapidly on the
mend with lots of walking. But my shoulders are another matter -
they still bother me a lot. I can hardly wait for the luxury of
sleeping on my side!!
Carol



18936 From: kevin rogers <kejoro@s...
Date: Tue May 25, 2004 2:38am
Subject: achillies tendon pain

hi everyone it's been about 8 month since i stopped the use of
Levaquin and am still suffering pain daily ..i'm new to the group but
i see i'm not the only one who has been injured by this medication..I
was wondering if any of you have joined class action lawsuits or are
persuing individual lawsuits ,if so i would like to know of an
attorney who is taking these suits ... thanks all .


18937 From: <mcorey1234@a...
Date: Tue May 25, 2004 3:11am
Subject: Re: achillies tendon pain

In a message dated 5/24/04 10:40:32 PM, kejoro@s... writes:
I
was wondering if any of you have joined class action lawsuits or are
persuing individual lawsuits ,if so i would like to know of an
attorney who is taking these suits ...

I was wondering the same thing, particularly since both my achilles tendons
are so painful and brittle that I can't even THINK about using them to hit the
brakes. So I haven't driven a car in over a year now.

The one thing that makes me worse is GABA, and that's ironic beause GABA
normally has a calming effect on the mind and brain.

Hope you feel better,

mc



18938 From: shelli <golubshelli@y...
Date: Tue May 25, 2004 11:59am
Subject: Re: achillies tendon pain


i am also wondering the same thing. i feel like the doctor, whom i trusted, let us down and that the system that was supposed to protect us did NOTHING! gregg can not work - he can not play - life is just short of miserable.



18940 From: roxymartini <roxymartini@y...
Date: Tue May 25, 2004 7:56pm
Subject: HELP!

I was a healthy 29 year old until I took a round of antibiotics for a sinus infection one
of them being tequin. I have had muscle spasms and tremors and severe
insomnia.
After still suffering and having spastic colitis, I was given a shot of depo medrol which
helped the inflamation but did nothing for my colon probs and my candida that I was
suffering. This is horrible. I have been to 10 doctors who think I am crazy. I don't
know where to turn.

Is there anyone in SF who knows the terrible side effects of these antibiotics that can
help?

-rx



18945 From: ScottMach4 <scottmach4@y...
Date: Wed May 26, 2004 6:22pm
Subject: Problems from Quinolones

I went to my family doctor almost two years ago for a severe chest
infection. He prescribed a quinolone for the infection and gave me
the prescription for 30 days. This was my first use of this new
wonder antibiotic. I immediately started to take the prescribed dose
and within 3-5 days started to feel worst. I started to have
problems with coordination and slurred speech and extreme pain in my
tendons. I had no idea of what was happening to me. I continued to
take the medicine and just got worst and worst. I started to really
slur my speech and my mind and memory started giving me problems. It
was so bad that I didn't even realize I was slurring and having
problems with my balance. I tryed to drive my car with my wife and
scared her to death as she said I was weaving on the road. I didn't
think I was. I continued to take my medicine for another week and
finally it got so bad my wife took me to the emergency room thinking
I was having a stroke.

I was examined by the DR. and he advised my wife that he was 99.9
percent sure I had had a stroke. They did a complete blood work up
and it showed quite a few problems. Hardy any WBC, RBC in my urine
and my platlet count was well below normal. There were also other
irregular numbers for other blood components.

The hospital sent me to a neurologist for a bunch of tests, MRI's
with and without dye and they showed no signs of a stroke. The
doctors were unable to figure out my problem and sent me home. I
continued to take my medicine for 28 days before I started to suspect
that it may be the quinolones that were giving me these symtoms. I
got on the internet and looked up the medicine and instantly found
many other people who were having the same problems I was. I stopped
the medication immediately and with in about 8 days started to feel
better. My pain in my tendons started to subside and my speech and
coordination slowly improved. The only lasting efects I had was a
lose of memory which I still have today.

I improved and had decided to have lasik surgery that summer. After
the surgery I was prescribed an antibiotic which was a very small
dose of a quinolone. I discussed this with my eye Dr. and he thought
that the small amount of this antibiotic would be ok. It only took
the first night of two or three drops in my eyes and the same weird
feelings rreturned. I stopped the medication and received another
non quinolones and was ok.

It has now been two years and 1 month and I have been back in the
hospitial for three days and have had several relapses. The last one
lasted from Jan.2003 until the middle of April.

I am now experiencing some of the same problems with coordination and
I am having a complete blood workup and urine screen done tomorrow to
see if my abnormalities are still present.

The one fact I read was that fluoroQuinolones are made with fluorine,
which is a very strong poison. And it is in the same compound in
Prozac, which I was taking at the time. I was getting a double dose
of a poison which has changed my life.

I will post any results from my latest tests but Iam wondering if the
problems or cycles will ever go away.


18949 From: susan_w_77429 <susan_w_77429@y...
Date: Thu May 27, 2004 2:14am
Subject: Drug side effects similar to Quinolones...Why can't we take legal action?


Lariam is the trade name for the anti-malarial drug mefloquine,
manufactured by Hoffman-LaRoche (approved by the FDA for use in the
USA 2 May 1989). Mefloquine is also marketed under the trade name
Mephaquine manufactured by Mepha.
Over the past decade, there has been increasing documentation, from
medical case reports and anecdotally, that both the frequency and
the seriousness of debilitating side-effects of this drug are under-
estimated. Perhaps most troublesome, is that serious adverse events
can persist for years after the end of dosing (see the medical
research references listed on the lariam bibliography page).

A study published in the British Medical Journal (31 August 1996,
313:13) found that "About 0.7% (1 in 140) travellers taking
mefloquine can expect to have a neuropsychiatric adverse event
unpleasant enough to temporarily prevent them from carrying out
their day to day activities, compared with 0.009% (1 in 1100) taking
chloroquine and proguanil. [emphasis mine]" Overbosch and colleagues
(2001) reported adverse events attributed to mefloquine in 42% of
486 people studied. Neuropsychiatric adverse events were found in
29% of the subjects, with 19% being considered "moderate or severe".

Anecdotally, many people have reported serious side-effects (e.g.
panic attacks, "epileptic type" convulsions, headaches, visual and
auditory hallucinations, etc.) that persist months after last dose,
and are so debilitating that they can no longer continue their work
or normal social interactions (see the many medical case reports and
media references). "Lariam Action" support groups have been formed
in the U.K., the U.S.A., New Zealand, Canada, Ireland, Denmark, and
Switzerland. As of March 2001, lariam-related lawsuits have been
filed in Ireland, Canada, Denmark, and the United States. (In 1996,
class action lawsuit against the manufacturer was filed in the U.K.
representing several hundred clients, but was withdrawn in 1999.)
Legal action against Lariam's manufacturer was filed in the U.S.
jointly by Stanley & Rose (Silver Spring, MD) and Suggs & Kelly
(Columbia, SC). For additional information, please read through the
references and/or contact Stanley & Rose (contacts).


18950 From: rmrippy <rmrippy@h...
Date: Thu May 27, 2004 2:28am
Subject: More on Lariam side effects


Drug causing GIs permanent brain damage

By Mark Benjamin and Dan Olmsted
United Press International
Published 5/26/2004 4:19 PM

WASHINGTON, May 26 (UPI) -- Six U.S. soldiers have been diagnosed by
the military with permanent brain damage from an anti-malaria drug
used in Iraq and Afghanistan, and health officials must reassess its
safety, a U.S. senator said.

Sen. Dianne Feinstein, D-Calif., in a letter to Health and Human
Services Secretary Tommy Thompson, said the drug, called mefloquine,
has "serious risks" that have not been adequately tracked by the
Pentagon, the Peace Corps and other government agencies that
distribute it.

"I ask that you work with the Food and Drug Administration to reassess
the safety of mefloquine," Feinstein wrote Thompson in a letter dated
May 24.

Feinstein told Thompson she is concerned that "six service members
have been diagnosed with permanent brainstem and vestibular damage
from being given this drug despite the fact that alternative drugs
might have been chosen to prevent infection."

The FDA last year warned that the drug, also called Lariam, is linked
to reports of suicide, though a connection has not been established.
It also said some psychiatric and neurological side effects have been
reported to last long after taking it. The Pentagon this year
announced a new safety study of the drug, which has been used by some
20 million people worldwide, and the Department of Veterans Affairs
said it will look at possible long-term effects on veterans.

According to people familiar with the situation, the six service
members were diagnosed in recent weeks by doctors at Naval Medical
Center San Diego. Its Spatial Orientation Lab, a Department of Defense
facility, specializes in balance disorders.

One service member who received a diagnosis is former Navy Reserve
Cmdr. William Manofsky, who became severely ill after taking
mefloquine in Iraq and Kuwait while deployed for Operation Iraqi
Freedom. Another soldier with a mefloquine diagnosis is a Green Beret
who served in Afghanistan.

UPI reviewed a copy of Manofsky's medical report from the San Diego
lab, which includes the notation, "Lariam induced," with the word
Lariam underlined.

Earlier this month, Manofsky filed suit against Lariam's manufacturer,
Swiss drug giant Hoffmann-La Roche, for alleged failure to warn of the
drug's risks and marketing a product it knows is unsafe.

Asked for comment about the suit, Roche spokesman Terence Hurley told
UPI: "We don't comment on pending litigation. Roche believes that the
labeling that accompanies Lariam, and which has been approved by the
FDA, is adequate. Information about the use of Lariam and
neuropsychiatric events has appeared in the product's label since it
was approved by the FDA in 1989.

"Roche takes issues of safety very seriously and works with regulatory
authorities on an ongoing basis to ensure recommendations on product
use take into account current scientific and medical evidence."

Manofsky said he became mentally and physically ill after taking the
drug, at one point taking his gun apart because he was afraid he was
going to kill himself. A year after he stopped taking the drug, he
still suffers from severe balance problems, trembling and memory loss.

The diagnoses appear to put the Pentagon, and particularly the Army,
in an unusual position: Military health officials continue to insist
the drug is safe and to prescribe it widely. Army Surgeon General
James Peake told a House subcommittee in February that "we don't think
it is as big a problem as has been made out."

Peake also dismissed any association between the drug and a string of
murder-suicides at Fort Bragg, N.C., in the summer of 2002 by U.S.
soldiers who took Lariam while assigned to units in Afghanistan.

"There was absolutely no statistical correlation between Lariam use
and those suicides," Peake said.

But the Army announced it will study possible Lariam side effects,
including suicide, as a result of the controversy. The study could
take up to two years, according to William Winkerwerder Jr., assistant
secretary of defense for health affairs.

In March another Special Forces soldier committed suicide after taking
Lariam in Iraq and returning home to Monument, Colo. William Howell's
wife believes Lariam triggered his bizarre behavior, in which he stuck
a gun in her face and threatened to kill her before shooting himself.
She accused the Army of not looking into whether the drug had played a
role -- the same charge made by friends of the soldiers involved in
the Fort Bragg incidents.

Howell's death in Colorado brought the number of suicides among
Special Forces soldiers during the war on terrorism to five. At least
four of the five took Lariam on deployments just prior to committing
suicide, according to the Army.


18951 From: <no1dosmom@a...
Date: Thu May 27, 2004 0:28am
Subject: Lariam


Drug causing GIs permanent brain damage
By Mark Benjamin and Dan Olmsted
United Press International
Published 5/26/2004 4:19 PM

WASHINGTON, May 26 (UPI) -- Six U.S. soldiers have been diagnosed by the
military with permanent brain damage from an anti-malaria drug used in Iraq and
Afghanistan, and health officials must reassess its safety, a U.S. senator said.
Sen. Dianne Feinstein, D-Calif., in a letter to Health and Human Services
Secretary Tommy Thompson, said the drug, called mefloquine, has "serious risks"
that have not been adequately tracked by the Pentagon, the Peace Corps and
other government agencies that distribute it.
"I ask that you work with the Food and Drug Administration to reassess the
safety of mefloquine," Feinstein wrote Thompson in a letter dated May 24.
Feinstein told Thompson she is concerned that "six service members have been
diagnosed with permanent brainstem and vestibular damage from being given this
drug despite the fact that alternative drugs might have been chosen to
prevent infection."
The FDA last year warned that the drug, also called Lariam, is linked to
reports of suicide, though a connection has not been established. It also said
some psychiatric and neurological side effects have been reported to last long
after taking it. The Pentagon this year announced a new safety study of the
drug, which has been used by some 20 million people worldwide, and the Department
of Veterans Affairs said it will look at possible long-term effects on
veterans.
According to people familiar with the situation, the six service members were
diagnosed in recent weeks by doctors at Naval Medical Center San Diego. Its
Spatial Orientation Lab, a Department of Defense facility, specializes in
balance disorders.
One service member who received a diagnosis is former Navy Reserve Cmdr.
William Manofsky, who became severely ill after taking mefloquine in Iraq and
Kuwait while deployed for Operation Iraqi Freedom. Another soldier with a
mefloquine diagnosis is a Green Beret who served in Afghanistan.
UPI reviewed a copy of Manofsky's medical report from the San Diego lab,
which includes the notation, "Lariam induced," with the word Lariam underlined.
Earlier this month, Manofsky filed suit against Lariam's manufacturer, Swiss
drug giant Hoffmann-La Roche, for alleged failure to warn of the drug's risks
and marketing a product it knows is unsafe.
Asked for comment about the suit, Roche spokesman Terence Hurley told UPI:
"We don't comment on pending litigation. Roche believes that the labeling that
accompanies Lariam, and which has been approved by the FDA, is adequate.
Information about the use of Lariam and neuropsychiatric events has appeared in the
product's label since it was approved by the FDA in 1989.
"Roche takes issues of safety very seriously and works with regulatory
authorities on an ongoing basis to ensure recommendations on product use take into
account current scientific and medical evidence."
Manofsky said he became mentally and physically ill after taking the drug, at
one point taking his gun apart because he was afraid he was going to kill
himself. A year after he stopped taking the drug, he still suffers from severe
balance problems, trembling and memory loss.
The diagnoses appear to put the Pentagon, and particularly the Army, in an
unusual position: Military health officials continue to insist the drug is safe
and to prescribe it widely. Army Surgeon General James Peake told a House
subcommittee in February that "we don't think it is as big a problem as has been
made out."
Peake also dismissed any association between the drug and a string of
murder-suicides at Fort Bragg, N.C., in the summer of 2002 by U.S. soldiers who took
Lariam while assigned to units in Afghanistan.
"There was absolutely no statistical correlation between Lariam use and those
suicides," Peake said.
But the Army announced it will study possible Lariam side effects, including
suicide, as a result of the controversy. The study could take up to two years,
according to William Winkerwerder Jr., assistant secretary of defense for
health affairs.
In March another Special Forces soldier committed suicide after taking Lariam
in Iraq and returning home to Monument, Colo. William Howell's wife believes
Lariam triggered his bizarre behavior, in which he stuck a gun in her face and
threatened to kill her before shooting himself. She accused the Army of not
looking into whether the drug had played a role -- the same charge made by
friends of the soldiers involved in the Fort Bragg incidents.
Howell's death in Colorado brought the number of suicides among Special
Forces soldiers during the war on terrorism to five. At least four of the five took
Lariam on deployments just prior to committing suicide, according to the Army.

18952 From: maktraveler <maktraveler@y...
Date: Thu May 27, 2004 6:04am
Subject: Tendon biopsy?

Almost 1 1/2 years after I took Levaquin I'm considering a tendon
biopsy.

Has anyone had a tendon biopsy?

In Feb of 2003, I had 7 days of Levaquin

I could barely walk, had to crawl up my staircase. I had severe
muscle weakness, muscle burning and joint pain in all my limbs. I
ached and burned in what seemed every tendon in my body. I was
unable to sleep due to the pain.

I told my family and friends that I didn't know what was happening
to me. I felt like I had MS. After researching this drug online, I
realized I was having an ADR to Levaquin.

1 and ½ years later, I still have the following symptoms:
• Severe tendon/muscle pain and tightness
• Tendonitis
• Tingling, numbness, prickling, pins and needles sensations in my
extremities.
• "Electrical" sensations
• Shooting pain
• Feeling of worms crawling under my skin
• Severe arm and leg weakness
• Twitching, spasms and contractions
I have limited function now, can't do my job any more and am
disabled.

Diagnosis: My Rheumatologist, GP, Neurologist, Hand Specialist, Neck
& Spine specialist have ruled out rheumatoid arthritis, lupus,
neurological disorders, disc problems or nerve damage. I've had
EMG's, blood tests, xrays. All the doctors lean toward a
fibromyalgia diagnosis. I'm now considering a tendon biopsy to see
if Levaquin changed the cellular function of my tendons.


18953 From: spyrodas <spyrodas@y...
Date: Thu May 27, 2004 7:52am
Subject: Re: Tendon biopsy?


Hi
I had the same adverse reactions as you after taking cipro and
noroxin for an urinary track infection.

My urologist gave me cipro for 4 weeks. Right after the first dose I
felt badly, join pain, burning, extremely fatigue, it was difficult
for me to go from one room to the other in my house without feeling
tired. Syptoms continued for a long time after the completion of the
medication.
After having done all the tests finally my reumatologist said that I
was suffering from fibromyalgia syndrome. He gave me antidepresant
(remeron, or this is its name in Greece) and magnesium pills. I
started feeling better after a week. My symptoms diminished for 80%.

Now after 2years I feel completely ok, with the only symptom left is
a soak or a steep look in my finger when I handle something very
strongly, the same when you are in a swimming pool for many time. Do
you experience the same feeling?

If you speak french there are some very good articles conserning
fibromyalgia in www.proteus.fr

I hope you soon be better and recover from the quinolones' problems
Spyros


18954 From: soniaandsam01 <soniaandsam01@y...
Date: Thu May 27, 2004 0:02pm
Subject: help! new to this!

hi folks. im posting from london having been searching the net for
information about quinolones. i was given an overdose in october
2003 of cipro and oflox together for PID and after suffering very
strange side affects such as confusion and ringing in my ears, two
weeks later i lost all mobility. im a 30 year old single mum of one.
i was completely frozen up. now its may and im walking better but
not without pain and stiffness and the same for all other joints. is
this a similar story for some of you guys? im excited to read that
you are writing letters and trying to raise awareness. i have been
told that im making this up and its just joint pain after a virus.
never had a bloody virus! i was a trained gymnast swimmer and cross
country runner and PE teacher. now im a mess! i am putting together
a case to sue hospital but there is so little information on this.
but it sounds like it could have been an adverse reaction by the
sounds ofyour stories too? what do you think folks?

sonia x





18957 From: <kings1978@y...
Date: Thu May 27, 2004 3:57pm
Subject: Re: Tendon biopsy?

I am living with this crrrahp for 5 yr since the onset of symptoms. I
hope that doesn't sound too depressing.

I have thought of a tendon biopsy but... it is my understanding that
any significant damage (amd even sub-significant damage) would be
detectable via MRI or ultrasound anyway. Also, if we do have some
kind of cellular level damage I would consider it unwise to cut,
poke, and remove pieces of already damaged tissue.

Besides... pretend they DO find a some kind of variation there? What
are we gonna do about it? Probably just more worrying. I would save
the cutting and poking for when things get so bad you NEED a REASON
for why you cannot walk anymore OR there is at least some reason to
believe that the knowledge would lead to a cure or effective treatment

Just trying to keep from getting "wrought over"

18958 From: JLese <frekkie@e...
Date: Thu May 27, 2004 4:53pm
Subject: Re: Drug side effects similar to Quinolones...Why can't we take legal action?

Susan,
Where did you get the info you post? It's out of date. Suggs & Kelly pulled out of Lariam litigation in 1999. Two randomized, double blind studies were published in 2001 and 2003, so by now the evidence linking Lariam to serious adverse effects is far beyond anecdotal.
I'd really like to know where you got this ancient history. Please email jlese@e....

18959 From: Julie <jaa0317@y...
Date: Thu May 27, 2004 5:25pm
Subject: Mono or Epstein Barr


Has anyone had this diagnoises?
Or had swollen Lymph node glands in the neck?
I just had it so bad that i couldnt move my neck.
Doc just ran a bunch of blood tests to see.
They have me on zithromax also for it.
sigh
Uncle I've had enough already!
Julie

18962 From: <WAlakhdar@a...
Date: Thu May 27, 2004 3:50pm
Subject: Re: Tendon biopsy?

I just discovered that being floxed wiped the magnesium out of my body. No
Magnesium can cause these symptoms.

18965 From: Julie <jaa0317@y...
Date: Fri May 28, 2004 11:51am
Subject: Re: Mono or Epstein Barr

HI Larry,
No she just did a lot of blood work.
The glands in the right side of my neck all swelled up so much it
hurt to move my neck. The mono test came back negative. But my white
blood cell count was very ellivated so she figures whatever I have is
viral. The glands are no longer swollen so that's good. But boy am I
tired!
Julie

18966 From: Julie <jaa0317@y...
Date: Fri May 28, 2004 11:52am
Subject: Re: anxiety
The Dr and I decided against it yesterday for now. But it is an
option she is willing to think of if this wave of panic doesn't pass.
Julie

18969 From: Justin <jjmg@a...
Date: Sat May 29, 2004 2:33pm
Subject: Re: Getting to the bottom of it all...

I have to agree.

My "peripheral neuropathies" flare-ups have always coincided with my
worst tendon-pain flare-ups as well. And they always
seem "downstream" from the tendon pain. So when I have really pain
pain in my knees and ankles, that's when I end up with toes feeling
like they are embedded in ice, or with the soles of my feet feeling
like they've been skinned or beaten.

I'm not sure I would use the word "inflammation", though. We all
know that anti-inflammatories don't help the tendinopathies and that
steroidal anti-inflammatories can actually *cause* a tendon rupture.
I do agree that it is side-effects from the tendinopathies that cause
the "neuropathies" -- whether by compression or some other effect.
(OR -- possibly the same thing that causes the tendinopathy is also
causing localized nerve-damage: e.g., some sort of vascular disease
that is reducing blood-flow to both the tendons and to the nerves in
the same area.)

As for fasciculations (twitchings, spasms), they seem to have NOTHING
to do with tendon pain and unlike my peripheral neuropathies (which
are always located at the extremities), my twitchings can happen
ANYWHERE: face, trunk, thighs, fingers, etc. My own semi-educated
guess is that the fasciculations are more due to the GABA issues in
our brains than due to any sort of "peripheral neuropathy": i.e.,
the brain is over-excited and sometimes just sends out bizarre
signals which lead to the twitching.

(On the other hand, I do have two sensory neurological issues which
are not peripheral: i.e. the constant unabating tinnitus (and
painful sensitivity to noise) and the various bizarre optical effects
(spots zipping around at high speed, illusions of smoke or horizontal
lines, pain from bright light or sudden change from dark to light,
etc. Whether those are due to problems in the auditory and optical
nerves or -- again -- due to GABA problems in the brain, who knows.)

As for peripheral neuropathy, I have seen multiple neurologists and
all are utterly firm in their insistence that whatever I have, it is
NOT what they consider peripheral neuropathy. This is mostly because
(in their opinions) peripheral neuropathy effects both sensory and
motor nerves, and (in their opinions) always leads to weakness or
paralysis. Guillain-barre syndrome, CIDP, etc., are problematic more
for the weakness/paralysis than for the sensory problems. (On the
other hand, diabetics do get sensory neuropathies a lot -- again due
to vascular/blood supply issues.)

Anyway -- enough rambling. I just think you are on to something :-)

Justin


18970 From: Angel_8384 <lparker30@c...
Date: Sat May 29, 2004 6:16pm
Subject: weird brownsh yellow spot on finger....

anyone else ever have this phenomenon? Ive had everything but I
think this is the weirdest not painful or anything just like a stain
on the skin that wont come off..

happened after finally going out and about outside. could the sun
have done it?I have a blurry pic if anyone wants to see it I'll
upload it some where and show it




18971 From: build_it95 <build_it95@y...
Date: Sat May 29, 2004 10:24pm
Subject: Re: weird brownsh yellow spot on finger....

I have similar on my forearm, just in the last two days. I've been in
the sun a couple of hours and I feel physically sick. Joint pain,
fatigue, vision problems, and I haven't changed anything else in my
routine except go outside.




18982 From: jackiemia13 <jackiemia13@y...
Date: Mon May 31, 2004 3:56pm
Subject: Reaction to Floxin

Please!!!! I need help. Took Floxin...Had a very bad reaction.. Need
to talk to someone that has been thru this... Please respond.. Jackie


18990 From: jeanhanna212 <jeanhanna212@y...
Date: Tue Jun 1, 2004 6:48pm
Subject: difference between neuro diseases and quinolones

I was just wondering if there is any way of discerning between having
a neurological disease like MS or quinolone syndrome? I know the
neuro symptoms and muscular symptoms are similiar but is there a
specific difference in the way the symptoms manifest? For example, I
get blurred vision for an episode of 2 hours and then it resolves.
In MS when it is caused by demylienation would the vision problems
manifest that way? I am not able to get an MRI because I would have
to pay for it myself and my MD will not write for one. All my blood
tests were normal (ANA,CBC,Rhem) Does anybody have any input?


18991 From: toomuchpsi383 <toomuchpsi383@y...
Date: Tue Jun 1, 2004 6:49pm
Subject: Re: anxiety
The first 3 months were realy bad, then it turned into a jittery
feelings and being anxious all of the time.. For a good year I had
cycles of it on and off until it finally went away.. I also had a ton
of other symptoms that were ongoing at the same time like muscle and
joint pain..

Total time of healing was around 18 months. It has been over 2 1/2
ears and i am prety much back to normal.. Hang in there. I know
anxiety is the worst.


18993 From: iluvscottie2hottie <iluvscottie2hottie@y...
Date: Tue Jun 1, 2004 9:08pm
Subject: update and questions

Hi, I haven't posted for quite a while. Just to remind everyone, I
am the wife of a quinoline victim. My husband was given levaquin
back in December for a sinus infection and well, it's the same old
story for us as well as all of you.

We really thought that by March, he was doing better. We even went
on a 2 week vaction to Florida and hit all the parks. So you can
imagaine all the walking he did and it didn't bother him. He even
slept great considering it was in motels. Anyway, by mid April he
started feeling bad again. Mostly the body aches, stomach problems
and real jittery. He has a very physical job so it was affecting his
work. He was also depressed and lots of anxiety (worrying that he's
dying from some horrible disease). We knew that the doctor that put
him on the levaquin in the first place and who we had seen since
would just blow him off so we tried a new doctor. We told him
everything that had happened (I have been logging everything since
Dec.) and he said that it was definetely the levaquin that was doing
this to him. I was shocked!! Finally a doctor who beleived us. He
calls it "syrum sickness". He says that when a person has a reaction
as bad as my husbands it affects your immunity system and your
muscles, joints, etc.. become almost foreign to you. He did a
physical and checked his blood for everything (just in case it was
something else) and all that came back fine. This was over two weeks
ago.
So here's whats going on now. He put my husband on prednisone. He
said that should help. Well, I think it did at first but now (he's
down to 2 pills a day) he seems worse that he was before. He's lost
weight and most people gain when they are on it and he has been more
depressed than ever. He saw the doctor again and he gave him an anti-
depressant (Lexapro). He also gave him Nexium to take when his
stomach acts up. Then last Friday, he thought he was getting another
sinus infection and they put him on zithromax 500mg and a
decongestant. The zithromax doesn't seem to bother him. I was
worried about all these different medicines interacting.

The doctor still believes it's the Levaquin. He says there's just
nothing to do to get it out of you. It's a time thing. My husband
goes back again next week. He is afraid that they will want to do
more prednisone. I think he was doing better when he was taking his
magnesium supplements. We really like this doctor and I have hope.
Unfortunately, my husband is running out. He is so tired of being
sick and I try to stay positive but it's so hard. It is starting to
affect our daughter and the relationship she has with him.

Can anyone give me advice? What do you know about prednisone and
it's effects? My husband is at the 6 month mark. I thought I read
here once that new symptoms come on about that time. Does anyone
know if that's true? We need some good days.

Thanks, I appreciate it.


18996 From: chiggins1066 <chiggins1066@y...
Date: Tue Jun 1, 2004 9:31pm
Subject: Re: update and questions

Your husband's story is very similar to mine. I was given Levaquin
in January and Avelox in March. My problems have not been as severe
as your husband's, but I've been through a lot of grief.

I had never heard of Serum Sickness, until you brought it up.
Usually that is a result of a vaccination (antibody), but I see
antibiotics can cause this as well.

I just got through taking Prednisone to treat my problems, and I
noticed the following....

the red sores on my hands went away, and the carpal-tunnel like
symptoms in my hands improved. However, it didn't do anything for
the tingling in my feet, and the overall lower leg pain. It didn't
make anything worse, so I would try a Medrol Dose Pack (4MG) and see
what happens. This is a pretty low dose.

I've lost weight too, simply because I've stopped drinking and I've
been watching what I eat.

Has your husband tried physical therapy? Has he tried Neurontin?

18998 From: Mark <mitrerom@c...
Date: Tue Jun 1, 2004 10:04pm
Subject: Re: update and questions

Dear Lady,

I am a Brit guy, suffering prostatitis and took my first 4 week
course of Ciprofloxacin 6 weeks ago (yup, a quinoline). I just
wanted to say I joined this group out of inquisitiveness because i
knew something about my condition didn't make sense to me. And from
the way you described your poor husbands quinolone sypmtoms, I feel
like him!!!..The jitters (I sometimes remind myself of my poor ol
grandmother who's got Parkinsons).. and anxiety???? Only yesterday i
was convinced I was going to die at one point...and couldnt keep
food down. Stomach problems?? I feel like every four of five days I
suffer a big bout of food poisoning!!!! I really want to hug you and
your husband because A) you shone an unexpected light on something
thats been a big problem for me and B) because I really empathise
with your husband. You felt he did better on magnesium? Right, I`ll
try that too! I pray for him. I hope he knows it's not him thats at
fault for being ill but the poison the Docs gave him. I CANNOT
believe this stuff is being given out to ill people!!! It gets me
blinding furious with those B*std drug companies (I work for Reuters
so know exactly how much they make from suffering and lie through
their back teeth to suppress side effect information just so they
can get stuff marketed) Somebody has to pay for all this suffering!

Rant over. For now. Just, thank you thank you thank you...one day
into this group and I can identify immediately. Take the very best
care and tell your husband to please not to give up. I`m not going
to. Thats not really the answers you're looking for I know but thank
you for helping me.

Mark H