The following post marketing reports are from the Quinolone Adverse Drug Reaction Forum hosted by Yahoo, which is independently owned and operated and has no association with the Fluoroquinolone Toxicity Research Foundation.

November 2004 Post Marketing Reports

20416 From: Betty Crawley <beejay31@c...>
Date: Sun Oct 31, 2004 0:00am
Subject: Re: FEEL THE NEED TO EDUCATE OTHERS BUT NOT SURE HOW? - TRY ANTIBIOTICS.ORG
Hello:
My name is Betty Crawley and I just viewd your Antibiotics.org Site. I am very interested in getting th eword out to others about the dangers of taking fluroquinolones, and would like to share my story with you. It concerns our 38 year old daughter, Kimberly Janne (Crawley) Stickler.
Kim was born February 22, 1964 and at the age of 7 months was diagnosed with Neuroblastoma -- a type of childhood cancer. She underwent chemotherapy, radiation, and two surgeries over a four year period -- but thank goodness the cancer itself was cured.

Unfortunately though, the chemotherapy and radiation did a great deal of damage to her kidneys -- leaving only her right kidney functioning, and over time, it too began to deteriorate. By the time had turned 38 the kidney was functioning at about 40%, and she was under the care of a Kidney Specialist, whom she saw on regular intervals.

In spite of this problem, Kim led a fairly 'normal' life. She was quite petite, 4'6" tall (tho she had convinced herself she was actually 4'8" tall -- and that extra two inches seemed to make such a difference to her! She wanted so much to be tall.) She weighed about 78 - 80 pounds, which for her height was about right.

Kim had a real love for people, and seldom mete a stranger. She had her own apartment, but enjoyed spending time visiting with us at the at the Retirement Community where we live. She related so well to older people, and attended many of the social activities here. She wasn't the least bit shy about going up to one of the residents she didn't know, extending her hand, and saying: "hi, I'm Kim -- what's your name?" And in just a few minutes she had found out where take the person lived, where they came from, how many children and grandchildrden they had, and even their age! I once told her people don't always like to be asked such personal questions, to which she replied: "Mom, they don't mind at all - they like me!"
Kim made friends so easily, and a number of residents in our community seemed to look upon her as their grandchild. She was so outgoing and had such a bubbly personality, and always had a smile and a hug for everyone.

Kim enjoyed attending Bingo at our Clubhouse on Thursday evenings, and even though she didn't win often, she had so much fun just being with people. She would flit from table to table, talking to different people, giving and receiving hugs. She learned one lady had a real fondness for choccolate tootsie pops, so every week she came witjh a handful of the tootsie pops to share with Barb and others at her table.

Kim loved people -- and if she felt someone was sad or not feeling well, she made it her own personal agenda to brighten up their day if at all possible. Sometimes it was a kind word spoken, or perhaps one of her big hugs, or an "I love you". She just seemed to know what would brighten up one's day -- and she truly was am "ambassador of good will" here in the Rdtirement Community where we live.

Kim loved cats and kittens -- all colors, sizes, and breeds. I believe if she could have had a dozen cats, she would have gladly done so! She had two cats of her own -- and often when she would call me on the phone, she would insist I "talk to my 'grandcats'!

In April of 2001 my husband, Kim and I made a trip to see our son and his family who were stationed at Lakenheath Air Force Base in England. During the three weeks we were there we made trips to Amsterdam, Paris and Edinborugh. We had such a wonderful time, and were able to see so many wonderful sights. Kim amazed us all during our visit to London. She walked for hours, taking in all the sites -- and her only disappointment that day was that she didn't get to go inside Buckingham Palace to meet the Queen!

We took a bus tour from London to Paris and Amsterdam, and by the time we arrived at our destinations, Kim knew almost everyone on the bus. I will never forget the evening we arrived in Amsterdam. We checked into the Hotel, which was on the outskirts of the city, and went to the dining room for dinner. We were informed that, unfortunately, we could not be seated and served, because we did not have any reseervations. Most of the group were going into the City, but we were tired, and just wanted to stay at the hotel and rest.

There were no restaurants near by, and we were faced with the idea of just having crackers and a soft drink for our dinner. We had been traveling since early that morning, and had looked forward to a nice relaxing meal once we reached the Hotel in Amsterdam. Kim left to go to the Gift Shop -- she loved shopping for souveniers, and a short while later she came to the room and announced we now had a table waiting for us in the Hotel Restaurant!

Later we learned Kim had marched up to the Matre d" and explained our situation, and apparently he was so impressed with this "pint-sized" young lady 's story about her parents ewho were "starving" and weho had looked forward to enjoying our first meal in Holland, our first taste of "delicious 'Dutch" food, that he arranged to have an extra table set up for us!!

Kim was such a kind and caring individual, and often reached out to others she felt were less fortunate. In spite of her own health problems, she worried more about her older brother and sister, who both have Cystic Fibrosis -- and it was very important to her that the entire family knew how much she loved us.

In May of 2001 Kim came down with an upper respiratory infection, and on May 23 went to see her Primary Care Physician. The Dr. prescribed Cipro for Kim -- without doing a chest x-ray or sputum culture. Kim was not running any fever, and the Doctor gave her SAMPLES of Cipro -- as she said it was an expensive antibiotic, and didn't know if it would be covered under Kim's insurance. She gave Kim NO indication at all that there could be adverse reactions to Cipro, and indicated this medication was very good for respiratory infections.

On May 24th Kim started coughing and the following morning, May 25th, I called her Physician to see if there was something he could recommend for her cough. The Doctor said he would call in a Prescription, and in his own words, said: "She should be MUCH BETTER BY MONDAY". May 25th was Saturday morning.

When I picked it up, it was Methylprednisolone dosepak, and I was puzzled, as I had expected a cough syrup of some kind. The Pharmacist assued me this medication was used for coughs. Kim started the Methylpred- nisolone, and took her morning dose of Cipro. Approximately five and a half hours later, while watching TV with family and a friend, she complained of being very tired -- and she was extremely pale. She said she did not have any pain -- but wanted to lie down and take a nap.

I walked with her into the bedroom, turned back the covers, and she laid down. I left the room, but had a strong feeling something was not right. I turned back to check on her -- placed my hand on her, and she did not appear to be breathing. I checked for a pulse -- but found none. We immediately called 911 -- and they were here within a few minutes. Our friend started CPR and mouth-to-mouth resusitation until the Paramedics arrived -- and once they were here they took over -- but NEVER were able to revive her. Her Physician told us she had died from "Acute Ciculatory Collapse -- due to Myocardial Infarction."

Although her Physician insisted the medications had nothing to do with her sudden and unexpected death, we are firmly convinced if she had NOT taken the Cipro and Methylprednisolone, she might well be alive today. During the last two and one have years I have done a great deal of research, talked to a number of nurses who are knowledgeable about these medications, and am convinced the medications had a direct bearing on her sudden death.

I have learned that any one with Kidney disease or damage should ONLY be given Cipro if it was the DRUG of LAST RESORT! And if that was the case (which it definitely was NOT), the person should be hospitalized, closely monitored, and a LOWER dosage of the Cipro be given!

Our daughter's doctor was WELL AWARE of her kidney problems, and any time Kim saw her Kidney Specialsit he always forwarded a report to Kim's Primary Care Physician -- the one who prescribed the Cipro! It is my belief that the Doctor possibly did not look at Kim's chart to refresh his memory about her kidney problems, or else, he simply did not know about possible Adverse Reactions (including death due to heart failure) from Fluroqunolones.

Although it has been so difficult to accept the loss of our precious Kim, we know she is and always will be with us in Spirit. She had a real zest for life, and brought so much joy and sunshine to all those she met. We miss her terribly, but we are determined to work to carry on the Legacy of Love she left behind. We planted a beautiful bush called "Yesterday, Today, and Tomorrow" in her Honor. The plant has beautiful deep purple flowers the first day it blooms, then the second day the flowers turn a light lavender, and oln the third they they are totally white. Purple was one of Kim's favorite colors -- and we feel thisd plant is very appropriate. We continue to look for ways to Honor her Memory.

In March of 2003 Kim was one of a group of "adult children" who were remembered at a "Celebration of Life" ceremony in Las Vegas. A number of parents who have lost a child met in Las Vegas, and released balloons with the name of each child, and filled with "forget me not" flower seeds. This was followed by a Candlelight Memorial service honoring our adult children.

Kim was such a caring and giving person, and loved helping others. She had such a kind heart, and spread sunshine everywhere she went. Although Kim was only with us for 38 years, she continues to be a source of Inspiration to our entire family. We have as our goal to spread the word about the risks in taking these fluroquinolones, and have signed a petition to be presented to Congress asking for an investigation into these dangerous medications.

Sincerely,

Betty Crawley



20417 From: mistervnv <bu2@s...>
Date: Sun Oct 31, 2004 4:03am
Subject: Does Anyone Else Have These Symptoms

I have or had a lot of side effects as a result of being treated
with Levaquin. Most of them, thank God, not as bad as some of you
have reported. Several of the these have disappeared or at least
lost in frequency and intensity.

Unfortunately I have recently acquired two new ones. I am wondering
if they are caused by the same drug or perhaps something else is
going on.

I have occasionally a funny sound in my right ear. Not like ringing
but more of low pitch steady whistle. Lasts for a minute or so at a
time.

The other one is a pain that comes stays for a time and so far has
always gone only to come back again. It is in the head but not like
a typical headache. It is more like a dull pressure or pain in a
spot on the right side between the eye and the ear but a little
higher up.

Has anyone else experienced this? I never had that before I got
floxed.



20419 From: bthejh <bthejh@y...>
Date: Sun Oct 31, 2004 11:23am
Subject: Re: Does Anyone Else Have These Symptoms

> Has anyone else experienced this? I never had that before I got
> floxed.
I also don't have many of the symtons others do and feel very
fortunate. I do hve the pain in my head you re describing, it
doesn't last long nd if I massage the area it seems to go away. I
feel it is just another of the many symptons we are going to suffer
before this is over. Which I pray for everyone is soon!!. I have
burning in my ears but no ringing so far.



20422 From: mistervnv <bu2@s...>
Date: Sun Oct 31, 2004 2:16pm
Subject: Re: Does Anyone Else Have These Symptoms

Thank you for your reply. I have also received a private mail from
another fellow sufferer. In his/her case the whistle like sound in
the ear is apparently benign and predates the Quinolone drug
exposure.

The pain on the side of the head, I complained about, now seems to
be steady for a couple of days. The problem is whatever happens
these days I wonder if it is a consequence of Levaquin?

I do have a lot of side effects other people report. Fortunately,
they are mostly rather mild by comparison. Except possibly the eye
related one. I even had to go to ER when I suffered what looked like
a mini stroke.

So far no reason for it has been found despite numerous tests. I am
still undergoing some tests including a CT Scan of the head
scheduled for mid November. If that turns out to be clean then the
inevitable conclusion will be: the villain must be Levaquin.

The irony is two months of a cocktail of drugs including a month of
Levofloxacin (Levaquin) appeared to do no good for the initial
malady it was prescribed for. An even bigger irony is virtually no
medical person will admit the problems were caused by the "L" drug.


20426 From: <christopia@a...>
Date: Sun Oct 31, 2004 10:47am
Subject: my cipro symptoms
My symptoms since I started cipro - I went from 25 to 85 in 8 weeks.
August - Swimming, broke cartlidge off of the bottom of my ribs and sternum,
now ‘clicks’
Sept 1 - Started CIPRO 500mg, 2x a day
Sept 5- Severe back pain
Sept 6 - Start Prozac, Buspar
Sept 9 - left Elbow clicking, knee pain - see dr for rib, costochritis?
(tietz syndrome)
Sept 11- feeling ‘tearing grinding in back’ to collar bone
Sept 14 - Stop Prozac, Continue Buspar - Go to ER for back pain. - severe
depression from Prozac
Sept 24 - oral sugery, still on Cipro, put on Predisone for a week.
Sept 30 - Stop Prednisone, and Cipro, notice TMJ, clicking of my jaw.
Oct 1 - pain and burning into left arm, left shoulder
Oct 3 - pain into right side shoulder and arm, wrists
Oct 5 - Cannot work more than 5 hours, back in so much pain
Oct 7- lose job, due to lack of strength
Oct 9 - back hurts into my neck, some hips and fatigue
Oct 10 - sleeping begins to be disturbed, waking up fatigued and depressed
Oct 12 - losing libido majorly, obsessing and depression
Oct 14 - severe pain in most of my body, neck and back being the worse
Oct 16 - both sides of body in equal pain, burning in muscles
Oct 20- getting worse, more fatigued, suicidal, overwhelmed, arms are so
tired I cant lift
Oct 20- 30 - BAD - given paxil, zanaflex, started eating correctly. Daily
gets worse.
October 31st - Have lost 32 pounds in 8 weeks time.

Neck is severe pain, feel I cant hold my head up by dinner time.
Back is severe - grinding, crunching - both sides
All joints crack and grind, cant move the way I used too.
Arms and leg shake.
Slurring some words, confusing words, saying the wrong things.
Muscles hurt to touch, VERY fatigued , hard to wash hair, eat, hold phone
Left elbow feels like death, cant use arm, noticing dark dark veins.
Waking up stiff and very sore, in a lot of pain. Hips knees and neck stiff.
Bad depression, Obsessing over my pain.
Family, Friends, Drs, seem to think its in my head, psycho, hypochondriac
Hard time typing, writing, anything to do with my arms, holding a bottle of
water is heavy.

20427 From: jwk <jwk@m...>
Date: Sun Oct 31, 2004 4:27pm
Subject: Re: Re: orbafloxacin
Am not so sure that it doesn't in people either. About one yr after
levaquin, I was found on exam to have cataracts, about 3 yrs after, macular
degeneration was evident. I was in my mid 50's. My parents are 94 and 84
respectively and were recently diagnosed with it. These are only a couple
of the examples of ADR's that I've gotten from levaquin. I think it was
made worse by the fact that I received a cortisone along with it, drank
coffee and ate grapefruit. Was also taking nyquil. None of which helped.

christopia@a... wrote:

Hey bud.
I hate to say it, but everyday I am feeling worse. I wonder if I am one of
the sorry bastards that took 60 days of cipro and its irreversable, or cannot
be fixed. Am I going crippled! jesus. I might even have fibro and joint
damage, who knows. I fear that the rheum doctor on Tuesday is going to say Fibro,
because he wont be able to explain all my pain and damage, and all the tests
are great.. so whats left. I want so badly to be hopeful, but in the past 2
months I went from great, to bad, then without work the past 3 weeks and no
cipro Im going from bad to worse. Last night I couldnt hold my head up my
neck hurt so bad. My muscles are so tired, I can hardly drive or hold things. I
fear this is permanent, the more I try to exercise them, the more tired and
dead they get.

I am trying to remain positive and say, this too shall pass, but will it?

Your a friend, Thanks for your help and listening. I am so fatigued! I miss
ME!

I wont try the PAXIL, I refuse to put drugs into my body, I am even going to
stop the 50$ worth of malic acid, magnesium, glucosimine and MSM, and seeing
the ZANAFlex isnt working, I should cut that out too.

My aunt sent over one of those MAGNET bed pads, pillow and blanket, from the
Nikkan company, she said to sleep on it and under the blanket and it will
help my body. Who knows.. Magnets.

Chris

20433 From: vmuleus <vmule@c...>
Date: Mon Nov 1, 2004 2:51pm
Subject: Re: Any familial arthritities?
Dear Yanis:
There is a study entitled "Physical Therapist Management of
Fluoroquinolone-Induced Achilles Tendinopathy" by a DR. Brenda
Greene. You may find thuis study of interest.

Basically, this journal publication is a case study of a 42 year-old
patient who suffered an FQ ADR and subsequently underwent
conventional physical therapy and had no benefits whatsoever. The
patient could hardly walk and then went to doctor Greene. Dr. green's
diagnosis was the patient had two pathologies going on. The first was
not a tendon injury from the FQ's but a "connective tissue" disorder
in which the tensile strength of the cells was greatly reduced due to
the FQ toxicity. The second was "motor" involvement which basically
means there was one of the many types of peripheral neuropathy
invovled as well. Docotr Greene developed a physical therapy program
called "connective tissue remodeling" and it apparently helped the
guy.

You can find this paper on the web. Second, if you saw the abstract I
posted recently on this site about prostate cancer treatment with
Cipro, FQ's target specific genes. One of the genes that are targeted
p21WAF1, controls, inhibits and accelerates, depending upon whether
its damaged or not, arthritis, osteoarthritis, rheumotoid arthritis
and other age-related diseases.

I believe that when people who suffer an FQ induced ADR but actually
do not have an infection, they are the ones who suffer the greatest
damage because the FQ's do not get used on the bacteria and instead
target human cells and end up damaging these genes. This gene p21WAF1
also controlls renal function. In patients who do not have an
infection and thus their genes, specifically p21WAF1, are targeted by
FQ's. This results in the inability or capability of the kidneys to
excrete FQ's and thus these antibiotics buildup in toxic
concentrations. Again, patients without an infection suffer the
worst. This is my opinion from reading thousands of articles.

me


20434 From: lableslea <leslea@h...>
Date: Mon Nov 1, 2004 9:05pm
Subject: Daily Fever as Pain Increases
Everyday about 10:30 am I start running a low grade fever, develop a
headache as the pain in my knees and hips worsen. By 4:00 pm I
usually have a 100 degree to 100.5 degree fever and hurt so bad I
have to sit with my legs up. I take Excedrin for the headache and
fever, but only rest helps the joint pain. Does anyone else
experience the daily fever. I am at 11 months and counting with no
relief so far.



20441 From: ddmdoro <ddmdoro@y...>
Date: Tue Nov 2, 2004 1:11am
Subject: Re: Any familial arthritities?
I think there is a connection.
My mother, who often took Cipro, came down w/rheumatoid arthritis
two years ago. It wasn't until I had an ADR to Cipro last year that
I convinced her NOT to take Cipro. I have told her many times that I
suspect her rheumatoid arthritis is the result of the Cipro.
Furthermore, my co-workder's 20-year-old son has RA too....and she
said that this came on after he'd been treated for a series of bad
infections.



20442 From: ddmdoro <ddmdoro@y...>
Date: Tue Nov 2, 2004 1:13am
Subject: Re: Any familial arthritities?
On another note, my father had psoriatic arthritis and had taken
fluoroquinolones for pneumonia. He died of leukemia which was the
result of a medicine he had to take for the arthritis.

20443 From: Blue Velvet <aunt_heap@y...>
Date: Tue Nov 2, 2004 1:46am
Subject: Seizure disorder?
All,
Has been just over two months since being floxed. Thought I was making headway (eating as much organic food as possible, no caffeine, taking calcium and OMEGA-3 supplements, Unisom tablet before bed) and then, WHAM! Last night the lower back of my head was swollen and hurt so bad, I could barely sleep. I also had searing pain behind my eyes. I cried myself to sleep eventually.
At this point, I don't know what to expect next? Is my head pain a precursor to seizures or what? Anyone else having these symptoms?
Also, I have been having severe pains in my lower legs of late. This is not in the joints but right along the calf muscles. I am wondering if I need to have a test run for vasculitis or something like that.
Anyone having these symptoms, please chime in.



20449 From: ddmdoro <ddmdoro@y...>
Date: Tue Nov 2, 2004 2:26am
Subject: Re: Seizure disorder?
I had the leg disturbances that you mention. Felt as if my calf
muscles would pop out of my legs (yet they felt weak) and it
occasionally (13 mos out) feels as if I have a golf ball inside my
left leg.



20456 From: ruffin144 <ruffin@a...>
Date: Tue Nov 2, 2004 2:03pm
Subject: Re: Seizure disorder?


--- In quinolones@yahoogroups.com, Blue Velvet <aunt_heap@y...>
wrote:
>
> All,
>
> Has been just over two months since being floxed. Thought I was
making headway (eating as much organic food as possible, no
caffeine, taking calcium and OMEGA-3 supplements, Unisom tablet
before bed) and then, WHAM! Last night the lower back of my head
was swollen and hurt so bad, I could barely sleep. I also had
searing pain behind my eyes. I cried myself to sleep eventually.
>
> At this point, I don't know what to expect next? Is my head pain
a precursor to seizures or what? Anyone else having these symptoms?
>
> Also, I have been having severe pains in my lower legs of late.
This is not in the joints but right along the calf muscles. I am
wondering if I need to have a test run for vasculitis or something
like that.
>
I have had the pains just below my calves. Your achilles tendon
goes up to and attaches to your calf muscles. It sort of fans out.
That's where the majority of my pain still comes from when I try to
walk. I had less pain right above my heel where the biggest part of
achilles tendon is. You can probably find a picture on internet to
see what I am talking about.

Michele in Arkansas

20458 From: Leslea_Bates <leslea@h...>
Date: Tue Nov 2, 2004 2:44pm
Subject: Re: Re: Daily Fever as Pain Increases
I believe our fever comes from the joint damage, but not an inflammatory response because my sed rate (shows degree of inflammation) is normal. I'm sorry to hear the people you are rooming with don't believe you are in pain. I am fortunate that my family is very supportive, but this is my second reaction so they know what I went through before although this time is worse and different in many ways. I'm with you on not giving in or giving up. My regular doctor believes what is going on, but just doesn't know what to do about it and my rheumatologist is just getting started, but doesn't believe my pain and fever are related. My regular doctor won't prescibe quinolones to his other patients now so we have one doctor on our side. He didn't prescribe the quinolone to me my ENT did. Hang in there you will probably be fine since you are young, I on the other hand am 47 and am wondering if I will recover.



20463 From: isabellarose99 <bradylady@r...>
Date: Tue Nov 2, 2004 8:07pm
Subject: PERDUE CHICKEN!
Hi everyone
I posted about a month ago about a relapse from eating chicken.
Well I am still going through the relapse over a month. I was
floxed in Nov 2002 and was a healthy 29 year old mother of 1. Well
now 2 years later here we go again this time it was from something I
ate. The night it began I ate Perdue chicken. I have read some
posts from the past few weeks re: Perdue chicken and I too see how
the website states it is antibiotic free, well no where on the
actual packaging does it state this. My thoughts on this is that
they can cover themselves because the package doesn't state
antibiotic free. In my case I have been 100% about for the most
part a year after the floxing, so almost a year fine with no
problems after a year that was so hard to deal with muscle/joint
pain, anxiety etc. Now I started to eat chicken about 8 months ago
with no problems and then BAM all my symptoms again. First it
started with anxiety and heart paps which I did not have my heart
involved the first time. and then a week later the muscle aches,
the soreness, weakness and easy bruising. My hair seems thinner,
which I usually have thick hair. I do remember that the last time.
Do any of you get reddness around the joints? The ball of my hand
looks very discolored almost bruised???.. it kills. I am so sore.
I am going back to trying to detox. It is hard but worth it.
Especially with all the halloween candy around :)

Well I pray we all get better. I want to give encouragement to
anyone just starting out. It does get better. I need a little
encouragement myself the past few days. But I am trying to stay
positive. I am just mad that this happened again. I hope we can
figure out why this happens.

Jen in Boston


20467 From: christopia1979 <christopia@a...>
Date: Wed Nov 3, 2004 5:09pm
Subject: possible side affect?
Hey all.
random question, but may I ask in trust of friends... since I
have had this Cipro reaction, my sexlife is very painful of course,
my body really cannot handle the movements (im a male) afterwards I
shake in the legs and my body just wants to die.

But the question is, I was a very active male, September 1st, before
I took the cipro, since I have had this adverse reaction, I have
totally lost my sex drive, holding an erection, and orgasm is almost
numb, no enjoyment. I was on Cipro for prostate issues, I hope I did
not do permanent damage. Just wondering if any other males or
females had major loss of libido?

Christopher


20468 From: christopia1979 <christopia@a...>
Date: Wed Nov 3, 2004 5:51pm
Subject: another possible side affect
Im not sure if this is cipro or not.. but the past few days, I am
getting bad pain in the area below my thumb, the fatty round part of
your palm, connecting up to the thumb. When I type, write, or put
any work on it, it kills. Its the deep tissue/muscle inside, even
now using the touchpad on my laptop I can feel its pain. I am also
getting darker veins in my arms and fingers. Any relation? I will
add it to my list of symmmmmmptommmss.. I pray I am back to my old
self within a year, being 25 and just starting life, this really
puts a stop to all my dreams.. specially being an artist, I need my
hands! But does anyone think this pain is cipro related with my ADR?

Thanks Friends, Chris


20470 From: isabellarose99 <bradylady@r...>
Date: Wed Nov 3, 2004 7:05pm
Subject: Re: another possible side affect
Hi Chris
I too am from Boston. I am only a few years older than you...Well
to answer your question...about the ball of your hand turning color
and hurting... I posted yesterday the same exact complaint. So I
guess it is part of the course. I was floxed 2 years ago and was
100% and ate chicken a month ago and am having a horrible relapse
almost worse than the first time taking Levaquin. I have read about
people having sexual side effects too and I believe that goes away
too.
Hang in there. It will get better we just need this group and lots
of positive thoughts...
Jen


20471 From: isabellarose99 <bradylady@r...>
Date: Wed Nov 3, 2004 7:47pm
Subject: Re: Update on my health!!!
Hi Kevin
I am having a horrible relapse right now after a year of being free
from this nightmare. I am in my thirties also and quite athletic.
I was floxed 2 years ago. Ate chicken and feel like I am beginning
the ADR all over again. Do you know what set off this last cycle
you had? Thanks, Jen

20472 From: <WAlakhdar@a...>
Date: Wed Nov 3, 2004 4:18pm
Subject: Re: another possible side affect
That is also probably part of the Adverse reactions.
The reactions will evolve and change for several months before they start to
back off.
Stop saying your dreams are gone, and so on. Pick yourself up, and start
setting your mind differently. No more stuff about dreams being over. O.k.
Just don't put that stuff down on paper and reinforce it. It is not going to
be that way. End of discussion.



20473 From: build_it95 <build_it95@y...>
Date: Wed Nov 3, 2004 10:17pm
Subject: Re: possible side affect?
I really hate to scare you Chris but I'm 39 and after Levaquin I had
the same problem and now I have to do Testosterone therapy.





20477 From: Blue Velvet <aunt_heap@y...>
Date: Thu Nov 4, 2004 4:03am
Subject: Help with any answers you can give
I am writing this about a family member who has been floxed with Cipro a little over 2
months ago. She took 500mg twice a day for five days and is 42 years old. The
condition she had that the Cipro was prescribed for turned out not to be as serious as
was suggested and probably didn't even need an antibiotic.
She can't use the computer because it bothers her eyes and she has pain in
her arms, shoulders and hands. She also has pain in the tendons in her lower back
and legs and sometimes pressure in her eyes.
She can only sit up for a few minutes at a time without being in pain. She had a
tremendous amount of Anxiety and fear and dread at first and that has gotten a little
better, but still has it. Some days are worse than others.

Her skin is loose where it was not before and she used to be limber and flexible, but is
not now. She stays in bed most of the time. She is an artist and now cannot use
her hands. She would like to know what to eat that will not contribute to the
problem. She knows not to eat meat or chicken with antibiotics and not to have
caffeine.
But she needs to know what TO eat as well as what not to eat. Also are there any
safe products to help with the pain and anxiety and is there a way to help the tendons
renew themselves? Does anyone know if the tendons ever get back to normal. Of
course, each person is different, but she is desperate to know what to do to
safely help herself. Also, what type of specialist have some of you found that
helped the most.

She has been to a neurologist and an MD that was supposed to be a naturalist, but
wanted to perscribe a powerful psych drug, which she did not take. The doctors really
do not want to believe that this is Cipro related and suggest it is psychological.

Any answers you can give will be appreciated.

Concerned relative.

20483 From: Fran Salomons <fsalomons@y...>
Date: Thu Nov 4, 2004 2:24pm
Subject: Re: Re: Question about relapse
Symptoms were tingling & burninng on right side,sore tendons in right arm, knee and heel, anxiety.....of almost the same intensity as when I was first floxed in Feb.
I had rec'd the flu shot twice anually prior to being floxed with no side effects. (My doctor insisted as I have a benign lung condition called sarcoidosis). I live in Canada so there was no paper" given.
I will probably never know if the flu shot, the shrimp or something else caused the relapse. I had not had any caffeine or poultry since being first floxed.

20490 From: vmuleus <vmule@c...>
Date: Thu Nov 4, 2004 5:11pm
Subject: Re: Levaquin theory
Dear Anne:
GABA receptors have a life og about two weeks and then are recycled
if you will in the body so permanent damage to GABA receptors should
last for only about two weeks. Why then do victims suffer long-term.
One theory is the FQ's are still in the brain and hence re-attache to
the new GABA receptors or it's actually NMDA receptors and
acetycholine receptors. I go with NMDA.
I suffered with severe anxiety, panic attacks etc along with other
chronic pain symptomsand I disagree with the sleep theory. I had no
problems with sleep or anything like that before taking FQ's and I
got hit extremely hard. I am still disabled with alot of problems
after seven years.
I think the panic attacks are really tiny ischemic seizures, not
panic attacks.
me



20492 From: <christopia@a...>
Date: Thu Nov 4, 2004 2:38pm
Subject: question for males.. relating the sexual side affects
has anyone had hard testicles? I feel they are almost swollen, and they are
firm.
- C


20498 From: build_it95 <build_it95@y...>
Date: Thu Nov 4, 2004 10:38pm
Subject: Re: possible side affect?
Testosterone gel (prescribed by Endocrinology Doctor) is rubbed on my
shoulders daily to raise my testosterone level back toward normal.My
Doctor checked my testosterone level in my blood because of my
symptoms of lack of desire ( low sex drive) and it took forever to
achieve orgasm. Also lack of energy, weight redistribution from
shoulders and arms and legs, to abdomen are symptoms. These all
started after taking Levaquin. Andy.


20499 From: build_it95 <build_it95@y...>
Date: Thu Nov 4, 2004 10:49pm
Subject: Re: question for males.. relating the sexual side affects
Chris, I had
the opposite. Mine shrunk to about 30% of thier normal size and
hardened. Mine actually atrophied and I had one removed partially to
check a lump for cancer.


20503 From: gospeltoyou <Gospeltoyou@a...>
Date: Fri Nov 5, 2004 1:38am
Subject: New Symptoms & Dr. Visit
I just started experiencing new ADRs that are different from the
initial onset of ADRs that began over 4 weeks ago. On Tuesday I began
to get extremely sharp pains in my left calf just below the backside
of my knee. The pains are so intense, and so sudden, that it almost
throws me to my knees. The pain only lasts for about 5-7 seconds,
then it stops. I have gotten them as close together as 5 minutes
apart, and as far apart as 3-4 hours. They strike without warning and
feel like someone shot or stabbed me in the calf. These are on top of
the other ADRs that I continue to experience.

Two weeks ago I told my Dr.(DO)that I was experiencing ADRs to the
Levaquin he prescribed and told him about what I discovered on the
web concerning ADRs to FQs. He told me that he never heard about the
ADRs and asked me to drop off some info on what I found, which I did
the following day. I finally visited my Dr. for the first time on
Monday since the ADRs began and he said that he has prescribed
Levaquin 1000's of times with absolutely no ADRs. But he agreed with
me when I explained that most probably never associate the ADRs with
taking FQs. He subsequently took blood tests for liver, kidney,
thyroid, diabetes, anemia, and electrolites. All tests came back
negative, which I told him would probably happen. He now wants me to
write down all of my ADRs and he is filing an ADR report with the
Ortho-McNeil rep and the FDA.

In the meantime, I'm experiencing a fairly mild day with the ARDs,
and I had 3 fairly good days in a row last week. What I am
discovering is that the ADRs come in waves, they come in and crash
hard, but subside and lessen only to re-group to form another wave
that crashes hard again.

I am a minister that also works constuction on the side, and all of
these ADRs have caused me great financial difficulties. But, my faith
is in God and I know He will pull me through this.
20508 From: <christopia@a...>
Date: Fri Nov 5, 2004 10:56pm
Subject: saw a rheum doctor, not so good
Well, I wish I had a better update for you all. I went to the Rheum doctor,
my blood, EMG, Catscan, Xrays and physical all came back fine. Nothing wrong.
I wanted to cry, I sat there and asked..."why are my arms dead, why are my
elbows and shoulders and neck clicking, grinding and so tired and sore"... he
had no answers... I asked "why is my body feeling 85, why do these muscles
feel torn, why do I have no sexual drive, why does my entire body feel like it
hasnt slept in weeks" .. he had no answers and then told me " some things are
not explained, I cannot figure out what is wrong with you and your mind
controls alot of things, I suspect and say, this is Fibromyalgia" he then touched
my neck, shoulders, '
elbows, hips.... that hurt, so he said, "yes, fibromyaglia".. the first
thing I thought was.. great, there goes life.. but then thought, this is a bad
diagnosis, and he is trashing me for not being able to figure out what it is
that is wrong. Okay, so now I either keep on a road of fighting this, and give
myself at least a year to get better, a hard long struggle. or am I in denial,
and do I need to accept this weakness and try and live with fibromyalgia.
The word freaks me out. Do I have drug induced fibromyaglia? I ask him this...
he says "I have never heard of Cipro causing such damage as to your body,
only known problems are achilles tendon problems, most severe, you may have drug
induced fibromyalgia, but your rib injury could have caused this too" - so I
think, OK, fine.. he then handed me a prescription for AMBIEN, only 7
tablets, per month. To help with sleep. No follow up appt.

What the F&*K to I do now? Do I have an adverse reaction, or do I have
Fibro, or do I have both going on? This is so hard. My body is so very weak and
seems to get worse daily.

I decide, that I will keep eating good, no meats, try and find a gym with a
pool, get some therapy, with this, maybe kick whatever this is into remission
or just gone for good. Or am I in denial and freaking out? I am more mad
than anything, this happens to me just as I begin my life, and now I am not
living. I do not dare ask, what is next, because when I do, something on my body
snaps, grinds, clicks, crunches, or just goes nuts. Last night I sat down
fast, and I did something to my lower back... Siatic nerve, who knows, but the
entire lower back is just furious with pain, I can hardly walk, add to that all
my other symptoms, and I sit here and think. How can I ever get a positive
mind?

The people I have met off of here have been such a good support team and
help. But maybe I am beyond help, can I truly believe that time and the body
will heal all, or do I infact need help of western medicine and antidepressents?
or do I detox and let my body do its own thing, and keep the strength in my
mind that one day in the future, this will all be a bad memory. Has this
drug done such severe damage to my body and its functions and system, or can I
fix the damage without doctors? They tell me that the clicking, and moving of
muscles in my back are normal, and thats my body.. but no one will ever
realize that I know, I know, I know, my body is not as it was 3 months ago, and
that cipro, or fibromyalgia has done very bad damage... can I fix it? do I have
the power to do so?

On monday morning, I am getting a new primary care doctor, I will also find
a new rheum doctor, and from there find therapy.

If there is anyone from Boston area, please email me directly, and inform me
of understanding or helpful doctors in the medical area here bouts. I really
need to find someone that is going to understand what is going on, and not
treat me as a mental patient.

Im really confused friends.. I dunno what to think or do.. Do I allow this
throw off diagnostic to be my final word, or move on in this confusing battle?

-Chris, 25 Boston

_Christopia@a..._ (mailto:Christopia@a...)


20510 From: teoflox <teotec@c...>
Date: Sat Nov 6, 2004 8:57am
Subject: Re: saw a rheum doctor, not so good

You are suffering a reaction to cipro. Your descriptions correspond
to a well known, and predictable course of events caused by plain
toxicity on your body. The pattern of the evolution you can expect
during the next months is well described by young floxies in earlier
posts.

You are currently getting through the acute phase. Your symptoms will
increase in number, sort and intensity and will change in
presentation before you can feel a remission.

The chances that you have fibromyalgia are minimal, matching the
knowledge that your doctor has on cipro and its adverse effects. In
my opinion is far worse to have a severe reaction to cipro than
having fibromyalgia, so there is not good news either. The severe
reactions to cipro cause permanent damage to eyes, organs,
cartilages, .... and disability and a truly and miserable life for
many years.

Severe reactions to cipro are not frequent. It is not yet possible to
know wether you have a severe, moderate or even mild reaction to
cipro because your acute phase masks it all. You will have to wait a
few months to get a more precise diagnostic.

Moderate reactions heal in 2 years on average. Life starts to look
brighter from the 12 or 14 months mark.

In mild reactions recovery happens around months 6 to 12.

Your young age is a very good asset that provides you with plenty of
chances of recovering completely (in time).

Your doctor can be a caring and loving one but has no idea of what is
going on in your body thanks to the cipro.

Remember that diagnosing a floxie that is going through his/her acute
phase as having fibromyalgia means just nothing, because obviously
the symptoms are the same (plus many others)and is the only recourse
of doctors unaware of cipro-induced devastating reactions but
acquainted with fibro symptoms.

It is positive that you share your concerns and fears with us, but it
is also worrying that you seem to have so much focused your mind
around a prefixed idea.

I suggest you to concentrate on fighting everyday's symptoms and
going on. It is hard enough, I can assure you.

Teo

20513 From: vmuleus <vmule@c...>
Date: Sat Nov 6, 2004 6:03pm
Subject: Re: saw a rheum doctor, not so good
Dear Cristopia:
I can tell you this: after being crippled for seven years and reading
tons of literature on this subject, there are patterns and trends.

FQ vicitms who take other medications to treat the symptoms of the FQ
ADR tend to not recover, tend to develop multiple ADR symptoms and
also see an increase in their severity over the years. Prescription
drugs I am talking about include cortocosteroids, NSAIDS, SSRI's,
benzodiazapines, neurontin, anticonvulsants and COX-2 inhibitors.

If you can, and not all vics can, but if you can, avoid any
additional medications. This also includes vitamios and supplements.
Many, not all victims get worse after taking moderate amounts of
vitamins.

Second, if you get better within the first 6 months, you will
probably see a full recovery. If you still suffer after six months,
you are in for a long haul. This observation is not hard and fast but
for the most part, what I have seen is those with the same intensity
of symptoms after 6 months will tend to suffer for years. Some people
get better after 2 to 3 years but for the most part, the four to five
year period is the time frame given for a almost complete recovery.

Of course people will say "that's not correct" and "I will get better
soon" bla, bla, bla and some will but the numbers don't lie.

A rough estimate is about 40 to 50 percent of vicitms will suffer for
years. About 27 percent will suffer permanent/long-term neuropathy
and 20 percent will suffer permanent/long-term tendon problems.

I say avoid all farm raised fish...only eat foods that are gaurenteed
to have no FQ"s. Focus on detoxification, however you may achieve
that. Do not be suckered in by doctors who do not know about these
reactions and will try and prescribe another medication that will
probably end up making you worse. Some people are soo ill that they
have to take another med and don't have a choice. Those cases it
can't be helped.

Sorry, I didn't sugar coat it but this is why we are fighting
Congress to initiate hearings so that we cAN GET RESEARCH ON THIS AND
FIND A CURE OR TREATMENT.

The reason FDA put "irreversibe" neuropathy on the new FQ package
inserts ammendments is because that is the truth.

me.


20514 From: ddmdoro <ddmdoro@y...>
Date: Sat Nov 6, 2004 9:34pm
Subject: Re: saw a rheum doctor, not so good
It's the Cipro. You'll get better, but it will take time.
I went through all of the tests too. Neurologist told me I had a
virus or a combination of fibromyalgia and chronic fatigue syndrome.
I kept saying, "It's the Cipro." No one listens.
It was a nightmare for the first several months: The anxiety, panic,
limb weakness, tremors, exhaustion, night sweats, depression, other
weird neurological things. I thought I was going nuts. At the risk
of sounding too dramatic, I must admit that several times I
contemplated the best way to put an end to it all if things got
worse.

Thanks to this group, we make it through.

I'm 14 months and doing very well. Even the tremors are gone.

Rest when you can. Take your magnesium and calcium. Stay away from
chicken and eggs unless they are antibiotic free. Drink lots of
spring water. And be very sure that no one ever gives you another
fluoroquinolone.

Hang in there. You're in good company.
20520 From: <christopia@a...>
Date: Sat Nov 6, 2004 9:55pm
Subject: Re: Re: saw a rheum doctor, not so good
Hey group.
I went to the ER tonight with bad bad back pain, maybe Sciatic. Its
getting worse.. they kept doing blood work and such to see if it was my
kidneys. Anyway, I talked to the dr on duty and told him how I was on Cipro for over
60 days, he was shocked, he told me he isnt suprised the meds did damage to
me. Was good to hear a doctor say that, someone at least realizes.
Also, they kept pushing pain killers on me and I was so scared to take them,
finally they gave me Oxycotton (sp) and Valium. Is this bad to take, with
my ADR?

Let me know, Chris


20521 From: avalonsands <avalonsands@y...>
Date: Sun Nov 7, 2004 7:34am
Subject: Re: saw a rheum doctor, not so good

That's the second time in my few weeks on this list that someone
reported dealing with an ER doc who was relatively hip to this whole
thing. I guess that's not surprising. They are probably seeing a lot
of floxies with "oh my god, what is wrong with me?" kind of symptoms.
I remember one of the ER staff making a little cringe face when I
mentioned I felt a little funny in the head after the Levaquin IV...

I saw an orthopedist the other day about my thoracic back pain who at
least acknowledged that it could be due to the Levaquin/Cipro,
because, he said, the drugs affect cartilage as well as tendons. But
he added that "this usually happens to diabetics who take them for
long periods," and he is inclined to blame the pain on "an arthritic
process." I am supposed to go back in a couple of weeks.



20524 From: <christopia@a...>
Date: Sun Nov 7, 2004 10:18am
Subject: valium and oxycodone

Id like to think that being 25, and now feeling 85, that I have some chance
that my body can heal this. If I indeed got drug induced fibromyalgia, I would
suspect that its underneath all the pain from the ADR. But I have totally
suffered alot of damage from Cipro in 2 months time. My shoulders, elbows,
knees, and some major back wear and tear. The doctors see nothing on Xrays, but
I will be finding a new doctor monday.

But I know that the next year of my life will be recovering, not eating
meat, exercising as much as I can take, and therapy. I will not take meds, and I
will research better ways of natural healing.

It is dissapointing after all the hope and inspiration I got from the group,
telling me that I will get over this and I will recover, to hearing its
probably permanent and I wont get better. If this is how my body is going to feel
the rest of my life, I choose to not live. Because at 25, I have no use of
my body the way I did 2 months ago. My left arm is totally going to be a bum
arm, and my back suffers bad. The rest of my body is severe fatigue, muscle,
joint pain. Stress makes me hurt even the worse. Thus they want me on an
antidepressent, but I am keeping everything out of my body.. so im battleing this
alone at 25, with no help and no one to listen, but my friends here. Its
overwhelming.

I have 9 days of valium and oxycodone. I would suspect that these
medications will not fuck with my body, and I do need them for my lower back
strain/muscle pull...but if someone on this group tells me that it would affect my ADR.
I will not take them, and suffer through. But the pain sucks, its Sciatic,
and pulled muscles. I was also thinking the past few days, that the pain gets
worse... will it heal? seeing my body is out of whack, will it actually heal
my back pain/strain? Or will it sit around for a loooong time.

20531 From: avalonsands <avalonsands@y...>
Date: Sun Nov 7, 2004 6:30pm
Subject: Pain-killers and rat rotator cuffs (was: FYI)
Whoa... Thanks for posting. This is sobering.
My orthopedist, because he at this point leans toward blaming my pain
on arthritis, wanted me to go on Aleve. (I have never had to take any
meds for more than a week, thank god, and even that has been extremely
rare with the disastrous exception of my illness in July. I have
always been antidrug because my mom was a classic "polypharmacy" train
wreck, but like a lot of us I was relatively willing to make
exceptions for antibiotics to treat severe acute illnesses that seemed
probably bacterial.)

I balked at Aleve and asked him, why Aleve? is aspirin so much worse
for the gut? (since I prefer older, time-tested drugs if any... no, I
was really not thinking clearly in the ER with a 102 fever, I should
have at least asked if there was something they could give me from an
older class). He replied "oh, well then take enteric-coated aspirin,
if you don't mind waiting an hour for relief, that's what I use." But
I've held off on that because of what you all have warned me about
anti-inflammatory drugs, and I'm glad I did. I will print this out and
show it to him on the next visit along with some material from Dr.
Cohen, etc.

Avalon


20532 From: avalonsands <avalonsands@y...>
Date: Sun Nov 7, 2004 7:05pm
Subject: Re: tendons
Chris, if a doctor at the ER was "shocked" as you said to hear that
you had taken Cipro for so long, then he knew you were at high risk
for tendon rupture.

What I am still wondering about is how much tendon material there is
around the spine, and where exactly. I too have been worried that I
actually tore or ruptured something in the mid-back. The orthopedist
only took x-rays, which would not show that, AFAIK. But chances are,
there is a lot more muscle material around your lower spine than any
other kind of tissue. And I don't know about you, but at least some of
my back pain is muscular, it's unmistakable.

In any case, remember that the damage from these drugs is not limited
to tendons--not to be too cynical, but that's just the first baby step
taken by officialdom, to get the word "tendon" up in lights with these
drugs. Cartilage, too, is affected, says my doc. Medical science has
only a dim picture at this point. Meanwhile, we are having trouble
getting through the day...


or would I know if I
> hurt a tendon or not. Because my pain is bad, but not getting
better. Now im
> scared to take the pain meds!

Hopefully, simple stretches would not be enough to bust a tendon, but
I don't know enough about our condition yet to have any certainty. In
fact, if anyone on thi list has info/experience/links they can share
about how to continue exercising safely after getting floxed, I would
really appreciate it.

I still think Oxycontin might be OK, in terms of not preventing
healing or making the damage worse. It is a narcotic (works on the
nervous system), not an anti-inflammatory. The trouble with Oxycontin
is you could get hooked on it. And that would be another big problem
you surely don't need.

It seems there are a lot of ups and downs to this. I felt horrible
yesterday, couldn't even breathe right from the pain and soreness, yet
this morning--after only 5 hours of sleep and for no obvious reason--I
got up feeling about 75% better. I hope tomorrow morning will be like
that for you.

Avalon



20537 From: richardson_bart <richardson_bart@y...>
Date: Mon Nov 8, 2004 2:29am
Subject: My Experience with Levaquin


The Day after Labor Day I awoke to a horrible pain in my side. I went
to the emergency room (I am 31 and have not been to a doctor since I
was 17, but I was hurting) and was diagnosed with a large kidney
stone. After going to a specialist three times within a month I
elected to have the stone surgically removed. The surgery was
suppossed to last 20 minutes but went an hour and a half. I was put
on Levaquin for five days to make sure that I did not get an
infection. I felt bad for those five days but I thought that was
normal because I had just has surgery. I had a stent put in me and it
was removed six days after surgery and they gave me another levaquin
to help prevent an infection from the reomval. I did not feel well
and my left ankle started swelling. I attributed it to my active
lifestyle. I thought that I had twisted my ankle while working. A few
days latter I had terrible stomach problems. Cramping, loose bowel
movements, etc. I went back to the doctor and he did some blood work
and decided I had an infection in my stomach. You guessed it, he
prescribed more levaquin. I took two more doses and I knew that
something was wrong. My left ankle and knee swelled up and I knew
that I had done nothing to cause this. I also started having chills
and being weak. I also felt that I really had to concentrate hard to
do simple things. I stopped taking the pill and called my doctor. He
said that I was probably worrying to much but he did tell me to stop
taking the pill. In the past few weeks I have been to see three
different doctors and have been in the emergency room with chest
pains. Everytime I have been to any doctor they run tests and they
all come back normal. They all say I should feel fine. However, I got
one of the three doctors I have since seen tell me that he would not
give levaquin under any circumstances. He said it was a horrible drug
and that many people had side effects like I described. I decided to
look up levaquin side effects and I stumbled onto this group and I am
glad that I did. I am 22 days out from taking the last pill. I have
good days and I have bad days. I get fatigued easy and I sometimes
feel that I am in a fog. The doctors also think that I may have an
ulcer and the one doctor who told me how bad this drug was thinks
that this may be the culprit. I am also experiecing rib cage pain and
flank pain. I have had this checked out and there seems to be no
cause. The doctor who told me about the bad side effects said that
levaquin could also cause damage to cartlidge. How did this drug ever
get approved? I am working out every day and I am trying to work
through this. Some days are better than others. I have missed more
work in the last two months than I have in the past eight years.
Fortunatly, I am a boss and I do have some flexability in my
schedule. My boss had a family member who went through the same thing
with another drug in the quinolone family. We both work with a lot of
people and we have both pledged to let everyone know about these
terrible drugs. Any advice on dealing with this would be greatly
aprreciated. Thank you.

20539 From: <mcorey1234@a...>
Date: Sun Nov 7, 2004 10:33pm
Subject: Re: valium and oxycodone
I sympathize totally, and feel the same way. Floxin has destroyed my life,
and I've been forced to go almost two years without driving my car, because my
achilles tendon cannot put ANY pressure on the brake pads. If this is the way
it's gonna be from here on out, I'm saying "uncle" from now, because I simply
cannot tolerate the day to day misery that these daily reactions are causing.


20544 From: vmuleus <vmule@c...>
Date: Mon Nov 8, 2004 2:40pm
Subject: heart damage
Dear A:
I had to have a pacemaker implanted as I suffered irreversible damage
to the electrical system of the heart
me


20545 From: <mcorey1234@a...>
Date: Mon Nov 8, 2004 11:55am
Subject: Re: heart damage
I'm so sorry to hear this. Did you take Tequin? The reason I'm asking is that
my dearest friend was given Tequin for pneumonia, and she developed a heart
arrhythma, so they implanted a "defibrillator" which is probably what they
implanted in you. It's no just a pacemaker, it actually shocks the heart to come
back on track when it loses its rhythm. Well, I'm so sorry to say that she
passed away last month, and it made me hate the drug companies all the more.

However, there are two things that she could have done to make it easier for
her heart to stay alive--she could have taken large doses of magnesium and
also of fish oil. So if you're not taking adequate doses of magnesium, I'd get on
it right away.

All this Vioxx stuff is petty when compared to the ravages of the
quinolones.....

mc


[Non-text portions of this message have been removed]


20546 From: richardson_bart <richardson_bart@y...>
Date: Tue Nov 9, 2004 0:48am
Subject: Re: My Experience with Levaquin


--Funny thing about sleep. I can sleep for six hours but if I get
woke up like I did the other night (phone call-wrong number at 3:30
A.M.) Then I cannot get back to sleep. Also, I have had some of the
strangest drams. They are not bad dreams but they are weird. Do you
have any problems with dreams?


20547 From: c_moreheadus <c_morehead@h...>
Date: Tue Nov 9, 2004 1:57am
Subject: Re: My Experience with Levaquin
Bart,

I took Levaquin for 5 days (last dose was 8/20/04). I still have days
where my chest feels like it's either hollow or on the verge of
collapse if I breath too deep.

I'm like you when it comes to sleep - no problem unless I get
awakened. My dreams have been surreal, vivid and at times rather
frightening. Only recently have they started to fall back to
pre-floxed states of normalcy.

Here's my 10 points of advice for you and others (for what it's worth
<smile>):



20548 From: richardson_bart <richardson_bart@y...>
Date: Tue Nov 9, 2004 2:17am
Subject: Re: My Experience with Levaquin


--Thank you very much for the advice. I have the same type of feeling
in my chest. I had it checked and they found nothing. I am sorry that
you have that symptom but at least I know that I am not alone. I have
also had issues with depersonalization. I have to work real hard to
overcome that problem. I have been on a multivitamin that my
pharmicist told me to try. That has helped. Also, I have had a
herboligist tell me to start drinking two table spoons of aloe vera
juice in the morning and two tablespoons in the evening. I am on my
third day and it seems to have helped in the area of brain fog and
fatigue. It has also helped in my digestion (which was messed up
after the levaquin). Does anybody know how well this will work? Thank
you.



20551 From: richardson_bart <richardson_bart@y...>
Date: Tue Nov 9, 2004 2:39am
Subject: Re: My Experience with Levaquin

For me it feels like you are watching yourself without any emotional
involvement. It feels like you don't care about things that should be
important. I do care but it is a decision instead of an emotion. I
know what needs to be done in my job and mentally I can do it.
However, I sometimes do not have the emtional involvement that I have
had in the past. Also, I care about my job but I do not always have
the passion that I have had in the past. I am doing all the same
things in my job and everbody says that they see no difference but it
does not feel the same. I do still have the love and passion for my
family and I still have the love and passion for my co-workers. That
has not changed. I love my job and I love the people I work with.
However, the emotional involvement in the workplace is not always
there. I want the passion to return. Perhaps I am defining this wrong
with the term depersonalization but this is what I feel.

Maybe this has to due with my priorities being reorganized. But this
feeling was never there until I took the levaquin.


20552 From: udukeshere <udukeshere@h...>
Date: Tue Nov 9, 2004 3:08am
Subject: Request for help on supplements + my story


Hi all,

This is my first post although I've been reading everyone's
posts
for 5 months now. I took cipro for an attack of diverticulitus in
2003 with no problems then again in May of this year and all hell
broke loose with me. My tendons were a mess (my wrists the worst)
with about every other symptom you all have had and listed so I wont
re list them again. My symptoms subsided mostly within 3 months with
just minor flair ups so I count my self very lucky!!

Anyway I went in for a Colin resection on Oct 6 due to the
reoccurring attacks of diverticulitus. The repaired section
perforated after the first surgery and they had to go back in 2
weeks later. In all I spent 21 days in the hospital, have a
temporary colostomy and am still stuck at home (not back to work. I
had Quinolone's listed as an allergy so they wouldn't give me
any.
That being said weather it was the anesthetic or one of the other
drugs they gave me caused a major flair up. Far worse than the
original ADRs. Basically right now the area around every joint in my
body is on fire and the skin at the surface is numb.

Per my reading on this board I'm taking magnesium (400mg) and
B-12
(1000mcg). I was looking for info on dosage. Right now I'm just
taking what it says on the bottles but I remember people on here
talking about taking larger doses. Any other supplements others
would recommend? I'm still taking vicoden (Spelling?) for the
pain
from the surgery. My concern is that I will need to go back in the
hospital in Dec/Jan to have the colostomy reversed and if the
tendons and joints get worse after I'll be bed ridden. I am just
moving now but with constant pain.

So as I said any advice on supplements and dosages that have helped
others would be greatly appreciated. Sorry if this was a little long.

Thanks
Dan


20553 From: <christopia@a...>
Date: Tue Nov 9, 2004 3:20am
Subject: Re: Re: My Experience with Levaquin


I was on Cipro for over 60 days. When I stopped it, my sleep changed totally.. I am in bed by 10-11 at the latest, and I am MAJORLY fatigued and just need my bed. Sleep is light, and I have nightmares, if I am woken up by a sound, I cant fall back asleep, and this is at like 5-6am to car alarms and such, and I get SO mad, I try so hard to fall back asleep. Before Cipro I would be up till 2am, having fun, sleep till noon, nap normal.. I was 25.. now im 85. I hope I can heal myself. I want this mylagia and cracks and crunches and tired arms, and tired mind, and no sexual feeling, and anxiety and dark thoughts.. I want myself back!

Chris


20554 From: richardson_bart <richardson_bart@y...>
Date: Tue Nov 9, 2004 3:56am
Subject: Re: My Experience with Levaquin


Before levaquin I could stay up until 1:00 or 2:00 a.m. and sleep for
three to four hours and be 100%. I now have to get all the sleep I
can which is usually six hours at the most. I feel tired and have to
pace myself a lot more. I also have joints that crack and crunch real
bad since I took this drug. I also worry a lot about things that
never bothered me but at the same time I have a hard time finding the
passion for the things that have always meant something to me. I just
try to live one day at a time and do the best that I can. I also pray
a lot and that has giving me comfort. Good luck to us all.





20565 From: patwoods125 <patwoods125@y...>
Date: Tue Nov 9, 2004 4:21pm
Subject: Quinolone Antibiotic-Omniflox

I am new to this list. In 1992 I took an antibiotic, Omniflox for
bronchitus. About 3 days after I started taking it, I got what I
thought was a stomach flu, vomiting, upset stomach, and head and body
aches. I also contracted a urinary infection and felt very
disoriented. I did not go to a doctor for these reactions. I did not
know at that time that this drug could cause these reactions. Later I
started having major depression and psychosis. Today, 12 years later
I am still suffering from depression. I was wondering if anyone in
the group knew anything about the connection between Omniflox and
depression?




20598 From: seagalaxy <linmarsta@m...>
Date: Fri Nov 12, 2004 2:00am
Subject: Re: Quinolone Antibiotic-Omniflox-DEPRESSION
--- there is an absolute link which Dr. Flockhart also reported in
during the anthrax issues. he also estimated 30 percent of ADRs were
psych effects.


you might find this interesting, posted in June of this year on the
board.
"got this from someone in Germany, who translated it for me.
Although he is a
researcher, he is not a professional translator. Please do NOT
consider the
translation definitive. It is sent only for your information.
jeanne lese"

THE ARTICLE
The latest edition of the "Deutsches Aerzteblatt" (something like
the German
equivalent to the BMJ) has a long story on suicidal ideation side-
effects of
fluorquinolone-antibiotics. This article is written by the German
Physician's Comission for Medications (Arzneimittelkomission der
Deutschen
Aerzteschaft).
---------------------------
http://www.aerzteblatt.de/v4/archiv/pdf.asp?id=42113

Notification: "From the adverse reaction data base": Suicidal
ideation under
treatment with 5-fluorquinolon-antibiotics

Deutsches Aerzteblatt 101, No. 22, May the 28th, 2004. Page A-1618

German Physician's Comission for Medications

One of the tasks of the German Physician's Comission for Medications
(AkdÄ)
is the registration, documentation and valuation of adverse
reactions of
medications. The AkdÄ would like to inform you about current topics
of the
work of its adverse reaction department and it's hoping to give you
valuable
information for your everyday work. Medications can cause depression
and
suicidal ideation. Such substances include inteferone, mefloquine,
possibly
SSRIs and definetly fluorquinolones.

The 5-fluorquinolones are prescribed widely (27 million / year) (1).
Physicians are well informed about their side-effects by several
publications and by the product information sheets for physicians.
The
Federal Institute for Medications (BfArM) and the AkdÄ have received
4825
reports on adverse reactions from 403 different products from 1990
until
February the 2nd, 2004. Most of these reports are gastroinestinal
disturbances (35,5%), disturbances of the muscular and bone system
(17.9%)
and pyschiatric disturbances (30.6%). Of these 30.6%, 0.5% are
suicide
attempts. The physicians' information sheets by the manufacturers
highlight
this adverse reaction. For example the product information of
Ciprofloxacin-Ratiopharm points out that "psychotic reactions
(including a
danger of suicide)" can occur. It is also pointed out that "these
reactions
can already occur after the first dosage." However, suicidal
ideation is not
mentioned in the product information of moxifloxycine (Avalox) so
far. The
product information of ofloxacin (Tarivid) mentions under "adverse
reactions" that psychotic reactions including a risk of self harm
can occur.
Still this adverse reaction doesn't seem to be known well enough so
far.
Therefore we would like to present the following cases from the
adverse
reaction database:

- A patient was treated with ciprofloxacine and moxifloxacine
several times
in the last few years. So far he had tolerated the medication
without any
problems. When he took ciprofloxacine again a depressive mood
occured. He
had to take 250mg of ciprofloxacine orally three times daily for
eight days
because of a severe acute prostatitis. Six days after
discontinuation the
patient woke up at night and felt a strong wish to commit suicide by
hanging
himself. He had already strangled himself when his wife saved him in
the
last second. He denied any previous suicide attempts. Another female
patient
over 60 years reported "a strong wish to commit suicide" after just
one
ciprofloxacine pill (250 mg) and said: "If any poison had been in
the house,
I would have swallowed it." The patient was very surprised of
her "lust for
suicide" as she called it. She discontinued ciprofloxacine and only
three
months later she reported the symptoms to her physician. The patient
said
she had never thought about suicide in her life before and there
were no
cases of suicide in her family.

- A 55 year old female patient who had been treated with
moxifloxacine
reported aggressiv and depressiv mood including suicidal ideation and
nightmares. Another female patient reported suicidal thoughts after
her
first use of 400mg moxifloxacine. It must be pointed out that these
side-effects occured in patients who were very surprised of their
suicidal
thoughts after discontinuation of the drugs as they had never
experienced
this phenomenon before in their lifes.

In 1998 the AkdÄ already reported 54 reports of suicidal ideation as
adverse
reactions after the use of fluorquinolones (2). This term included
death
wishes, suicidal thoughts, suicidal ideation and suicidal acts
(suicide
attempts and suicides).

We think two consequences have to be taken: First of all, the
prescription
of fluorquinolones to all patients with a history of psychiatric
disturbances should only take place under special circumstances that
require
these substances. Second of all even patients without any such
history
should frequently see their physician again during treatment so he
can be
sure that no psychiatric changes have occured.

We think it is possible that a high number of unreported successfull
suicides in connection with 5-fluorquinolones have occured. Every
case of
suicide should be examined with a blood test to find out what
medications
have been taken. This is the only way to find out how frequently
suicide
occurs under 5-fluorquinolones. Once again we would like to point
out that
we think the actual number might be strongly underestimated.

Please report all observed adverse reactions (including suspected
cases) to
the AkdÄ. You can use the form that is frequently printed on the
last page
of the Deutsches Aeerzteblatt or you can download it from the AkdÄ's
webpage
www.akdae.de .

Literature
1. Schwabe U, Paffrath D (Hrsg.): Arzneiverordnungs-Report 2003.
Springer-Verlag Berlin Heidelberg New York 2004.
2. Wolfersdorf M, Müller-Oerlinghausen B: Gyrasehemmer,
Depressivität und
Suizidalität. Münchner Med Wschr. 1998; 140: 113-116.

Arzneimittelkommission der deutschen Aerzteschaft, Aachener Strasse
233-237,
50931 Koeln, Phone: 02 21/40 04-5 28, Fax: 02 21/40 04-5 39, E-Mail:
info@a..., Internet: www.akdae.de

20601 From: <annebeard@a...>
Date: Fri Nov 12, 2004 1:06pm
Subject: Re: hepatitis booster


hello everyone,
I travelled in India earlier this year, which is where I received the Levaquin treatment 8 months ago. I am now due for a Hepatitis booster shot. Am I taking any risks with this as far as the FQ ADRs are concerned? I have be getting better very slowly, but steadily over the past 6-7 weeks, with occasional relapses in between. It's so helpful to hear from others who have found light at the end of this dark tunnel, but at the same time very disheartening and sad to realize that not everyone have made it onto the road to recovery.
Thanks for getting back to me!
Anne


20602 From: Blue Velvet <aunt_heap@y...>
Date: Fri Nov 12, 2004 8:00pm
Subject: Re: Re: Quinolone Antibiotic-Omniflox-DEPRESSION

So then why won't any doctors believe there is any such thing as ADR to FQ drugs. I cannot seem to find one that will take me seriously. If they grudgingly admit there is some chance of ADr they deny it can still be happening months after having taken the drug.

I say that if a drug causes enough devastation it takes time for the body and mind to heal, plain and simple. Why would that not occur to doctors ? I mean it wipes out brain chemicals and attacks tissues, htat is supposed to heal instantly if you stop taking hte drug ?

I am devastated by this and there is nothing in the warning or side effects list that tells people that they CONTINUE past stopping taking hte FQ drug. This should be remedied asap. If I had known there was even a small chance symptoms would continue for months or may be permanent there would have been NO way I"d have taken the drug I'd have risked my bowel infection/inflammation killing me before risking this LIVING HELL I have been in and my family watching me suffer living their own hell too.

Every time I think I am getting better then the pain returns it is hard to just gather up a wish to live. I don't want to get more specific than that. Who is going to pay for doing this to us ?!?!?!




20604 From: Blue Velvet <aunt_heap@y...>
Date: Fri Nov 12, 2004 8:25pm
Subject: when will this pain end - and other questions

I hope it is OK that sometimes my family (close family) look at this board for me - my eyes have hurt so badly for a few weeks now, at this particular moment they are not so bad and I've found I can't be on computer at all at night cos the overhead light drives my eyes into such pain, (as if being floxed were not depressing enough now I have to lie in a dark room !). I also asked them once or twice to post a question in my stead. They said no one replied.

So here I am, I may pay for this tonight in increased levels of pain in hands and arms but here goes. It is to a crisis as far as my needing to know some answers and hope for some reassurance if possible.

I was an artist before and drawing and art are such a part of me, I feel I am barely existing without being able to draw - if I even so much as write a short note my hands are screaming in pain later that night and all the next day... Not that I need to do anything to have pain. The pain is not equally bad in all parts on all days but I always have bad pain somewhere. And if I use a muscle or body part such as brushing my own hair or brushing my teeth or showering then all those muscles and tendons are lit up for at least a couple days, more than usual.

My ankles hurt daily there is never any change in that. OK so on to the questions.

Will this pain ever end ? I had Cipro 500 mg twice/day for five days in Sept - I Keep thinking that the pain will fade. Hubby says he tihnks I am getting better but I don't know about that - he can't feel the pain etc. or the depression. I went to the ER twice last week once for chest pain and weakness (I told him I felt like I was dying) and once for depression (a waste of time - they refused to believe Cipro could cause it and still I had to wait out in the hall w/out any privacy for hours before they'd sign me out to go home - they were just too busy etc. I mean why won't Drs even look into our claims w/out dismissing them - why do they take the drug co. info at its word ?? Are drug cos. required to say HOW LONG a side effect lasts, anyway ?).

How long does it take tendon pain to go away ? My hands and arms being affected is the hardest part next to the mental damage. I mean, I want to at least have a positive attitude and I do all I can for that but -- it is so hard. I lie in a dark room most of the time, I depend on others to take me outside but that happens rarely. Sometimes I am in such pain in my muscles I could not go anywhere anyway - not even downstairs to sit. At times I have been unable to sit - I tore up some muscles or tendons simply by leaning down from a seated position, to pick up my own shoes for the first time in 2 months - and just leaning down like that tore me up so badly, that I had to lie flat (could not sit up even in bed) for days. I took Unisom to sleep - but after 1 week that gave me such a head and eye ache (or was it flox still) that I had to discontinue it. Just be sure & get the sleep tabs not the extra strength if you try it yourself cos the stronger one interacts with other
drugs badly etc... And always check w/your Dr first anyway before taking anything.

OK so anyway - I go from Dr to Dr, none will believe me, each time that happens I despair more. I want something to hang my hopes on, and I am not finding anything.

Right now just sitting here this long my rear end is going totally numb, I am so sick of all these weird things happening in my body !! Being floxed is like suddenly waking up in someone else's body - and mind too really (or emotions).

One of the ER doctors is going to send me to his friend and I hope that Dr believes me ... Due to a second trip to ER we had to cancel our first appt with him and reschedule. SO wish me luck please. I am getting near hte end of my emotional rope. If anyone else came in with pain they would at least treat it - but doctors once they hear Cipro will not do a thing for me, not even pain pills. ANd I am normally against takikng pills of any kind - I only took Cipro cos my first Dr lied and said my condition was worse than it was (to shut me up I guess and 'do as I say') and I have since seen my records, my condition would not have killed me. I had begged him for another Rx for plain penicillin.

By the way - I wish I had known of ordering Rx from Canada before - but I was so sick and weak I couldn't have thought of it at that time.

Nor Have I ordered anything from www.canadapharmacy.com anyway but oh boy how I wish I had - I have missed SO MUCH in hte past few months, family occasions, things that were real important for me, and I was flat on my back in a dark room.

I am thinking htat I will end up in a wheelchair, cos I still can't walk right, my ankles just won't bend and my legs are like rubber.

WHat does it mean when the Dr hits your knees or elbow with a hammer and your limb does not move at all ? They do'nt say a word to me when that happens. I know it can't be good. Last time, at the ER both my legs did not move a bit when hte Dr hit each knee with that little hammer.

The Dr prescribed Ambien so I can sleep. Any advice - should I take it if desperate ? He only gave me 5, I guess to be on the safe side. Basically they all treat me like a nut and that just makes me feel worse about myself right now.

I did have one kind Dr in that first ER trip earlier this week - I am hoping against hope htat his friend will be just as kind and will try to help me. REALLY help.

I found a good resource for anxiety (by the way I have NO affiliation with anything that I post here it is just if it helps me at ALL I want to share it just in case it can help someone else !!), www.panic-anxiety.com I got his kit and so far reading the book, there is a lot that might help us too although our reason for anxiety is different, he did a lot of research into it cos he had it for years. He mentions GABA being important and how it helps block pain too, and the two (GABA and pain) seem connected I think ?? And he mentions that sometimes the body will release histamine after a meal - any meal - and then the person's symptoms worsen.

Well my phone is ringing if anyone can help me please do.


20606 From: Blue Velvet <aunt_heap@y...>
Date: Fri Nov 12, 2004 9:03pm
Subject: Re: Re: Request for help on supplements + my story


Hi Dan

I missed your original letter (I can log on only rarely - even if not in too much pain to sit, or to type or to look at the screen - then emotionally I often fear that reading tihngs which bring back the first days of my own ADR will lead to a panic attack).

Did you say you had a recurrence ? What happened ? Does simply having surgery or another body trauma or exhaustion lead to a recurrent ADR ?? I still have (SLIM) hopes of having children one day and that would certainly go under that category !!

How long after your originally taking the flox, did you have anohter bout of it ? Did you take more flox, or did it just come back ? This is kind of a scary thought.

Does anyone have any advice on what to do to stop these drugs from getting more people as victims... Why isn't anyone doing anything to put out the word about how evil these drugs are. Cipro has just devastated my life.

20607 From: Blue Velvet <aunt_heap@y...>
Date: Fri Nov 12, 2004 9:18pm
Subject: feeling of muscles tearing with any movement ??


I have this feeling sometimes like muscles are tearing. What is happening ? I lean over to pick something up (a few weeks ago) And it is like everything tore in my lower back. After that when I would try to get up from a seated position, I could literally feel tendons over my lower spine, scrambling for a position around the vertebra so they would not have to stretch (and likely tear). It was a very weird sensation.

But also I seem to have torn something in my right side simply getting out of bed to use the bathroom. It still hurts and pulls, with pain. I don't know what is happening to me. Why don't the warnings give any clue how bad the ADR could be ? My doctor and nurse said the ones listed "don't actually happen to people - they have to list everything from the trials". THat doesn't even make sense does it - if it happened ot one it can happen to another one. But there is no clue given in the info sheet that these things can LAST and LAST and be PERMANENT.

I am so tired of doctors being patronising sarcastic and even insulting, or labeling me crazy and imagining it all (OH I WISH !!!). I mean I get my hopes up and go to them only to realise very soon that they think it's some type of delusion. Would htey treat anyone else this way ? But mention Cipro and boom you are stamped a lunatic. As if this is not devastating enough already.

We have an appointment for Mayo soon - can anyone tell me if they are more open minded and informed than other medical professionals ?? I am struggling to just stay sane (especially when being deemed crazy for no reason other than pain they can't find proof for in their simple blood tests) and to keep my spirits and hope up, to just get through each day.

We pray and say positive things but mostly I lie alone in a dark room and many days can't even read or watch tv (my eyes hurt too badly). On top of all this I do not even know what has happened to me.

Has anyone compared our symptoms to say, arsenic poisoning ? Wouldn't doctors take that seriously ? So why not FQ poisoning. It is frustrating cos at least if they took it seriously then SOMEONE Might do some RESEARCH for a treatment.

Am I going to be like this forever ?? I should not even be using my hands, cos in order to try to not cause myself permanent damage I am thinking maybe if I just lie and do nothing (or as little as I can) then someday I can heal and be "normal" again (what was normal for me, I mean - before floxing).

I know no one has a real answer, and I don't either.

Can I request one thing and of course there is no obligation here.

But, when people write they are better, or even they did not get better, can they put some context to it ? It is'nt possible to read every letter & remember every detail - so maybe just a footnote saying how long ago you were floxed and how long you took the FQ drug and so forth... Cos otherwise if someone just writes in saying "I am better" I do not know if it's similar to my case or not. Or "I had a recurrence" I do'nt know how long it has been since htey took it. Of course no one HAS TO it would just help me for one, is all. To give a sort of context and hope.

ANy doctor I talk to just SWEARS to me to hte point of being angry or sarcastic or insulting - that it is NOT possible for Cipro to STILL be affecting me since I only took ten pills over five days. That anyone who would have a lasting effects would "HAVE TO" have taken it for at least two weeks. That (they say) otherwise it it not possible and all but one have said it was in my head and to see a shrink !!

Only one Dr. said he believes I do have some type of auto immune disorder but he can't figure out what or why. And he gave me his friend (rheumatologist) phone # and wished me well and he seemde like a good person. But he was baffled by it since no muscle inflammation shows up in blood tests etc. He said it should if I had certain auto immune disorders. Thank heavens at least he saw a POSSIBILITY that I was not LYING or CRAZY. That in itself, doctors who say we are making it up or crazy - adds to the depression and isolation and hopelessness, in my opinion. I mean I feel literally as if I am living a nightmare I cannot wake up from.

How can we make Bayer tell us what is happening to us and what FQ drugs sometimes do ?? THEN maybe we can be guided to a good treatment. Don't they owe us THAT MUCH at least ?!?!

20608 From: Blue Velvet <aunt_heap@y...>
Date: Fri Nov 12, 2004 9:22pm
Subject: email campagian ?


Does anyone think that we should start an email campaign to warn people about FQ drugs. I mean, I had even seen the entry page to some of the anti FQ websites before taking it. But I did not get all the info I needed.

Can there be something in bold letters about LASTING side effects ?? Cos people's doctors even if they see hte websites will tell them "Oh those are SO RARE" or "OH those don't LAST" etc. Or "Oh, you have to take them for months or weeks" (like Gulf War vets did) to have those side effects.

Well you should have seen one doctor's face when I told him that Bayer's info sheet mentoins that ADR can happen with ONE PILL (I think where it talks about the monkey tendon tearing). His eyes got really wide - he looked so afraid. He was hte one who forbid me from reading anything about the internet (and at that time, I actually stlil was in the confused stage adn tihnking I coiuld find out how to treat this - the internet did NOT cause me fear at that time- it's almost like he planted that phobia FOR me - cos now, it does - I can't stand to read about this really).

Anyway, that Dr. kept telling me, "This Is NOT Permanent" etc. I wonder if he needed ot believe it more than I did.
20610 From: Dan <dcrin@e...>
Date: Fri Nov 12, 2004 9:28pm
Subject: Re: Request for help on supplements + my story


I said reoccurrence but it had only been 5 months since I took the
Ciro and the ADRs hadn't completely cleared but they were getting a
lot better and were mostly gone. So I guess I would call it a flair
up (a bad one).

I had Quinolone's listed as an allergy so they didn't give me any. I
wasn't to bad after the initial surgery but after my bowel
perforated and they had to operate a second time it got bad. I think
it was from so much anesthetic but to be honest I was so out of it
on morphine after the second surgery I'm not even sure what they
gave me.

Stay positive. Feel better!
20612 From: Blue Velvet <aunt_heap@y...>
Date: Fri Nov 12, 2004 10:00pm
Subject: flailing in the water - need answers/hope

HI again everyone

I am sorry to be such a downer today but today is hard, it is only the 2nd time I think, that hubby has gone to work in the out of town office and those days he gets home much later, I have to be alone much longer and being alone flat on my back is so hard. I have so many questions but I am afraid to ask most of them anyway, so I just sit and think and suffer basically. It seems every week is some new symptom and if one hting gets better another thing comes to replace it.

Please anyone with a website on this - consider putting in BOLD letters that the ADR lasts past taking the pills and NOT to believe a doctor who says otherwise. Even if a small percent of people get ADR (do we have any numbers ?) when it does happen it is devastating and changes your life forever.

We have not been married that long and we are older and this was our window to have children, now that looks impossible although I allow myself the slimmest hope otherwise or I would Go INSANE for real. Not to mention now we can't go anywhere really or do anything, if we do, even to a doctor appt., I can't continually guzzle water while traveling so I get more pain and weakness after an outing. I have to drink more water than I ever thought possible or I Get massive pain - and maybe I would anyway. Not sure.

I did find relief and calmness and easier sleep by taking Unisom Sleep Tabs (NOT the extra strength ones) for a week but then my eyes and head hurt so badly I had to stop, I am still overly sensitive to any light since then, not sure if it wsa that or hte Cipro ADR itself. I was somewhat sensitive to light since Cipro anyway. But maybe for someone else it would work better.

My theory is that FQ drugs for some people send their bodies into overdrive an auto immune response that attacks your own tissues and body. And the only real answer is time and building your immune system up again. But meantime the pain, depression and worry - as there are no real answers just waiting.

So I find myself unable to plan normal things. The holidays are coming up and I can't look forward or plan anything, other than an organic meal on a bed tray. I ca'nt shop and can't use my hands - typing today is really risking pain for days - but mainlhy I can't use them to grasp anything without lots of pain - tendons just scream - so I can't wrap gifts. I know there are people who are worse off than we are but what hurts is, first the doctors being so COLD before and during this, and then the fact there are no real answers to it cos I'm sure Bayer has the info on what EXACTLY this does but won't let go of it to help us - and then the fact that there's no way to tell whether or if I will get better.

Of all my fears losing my hands (to draw with) and losing my sanity (depressoin, anxiety) had to be among hte top ones and now here it has happened. And what really is hard to take

THIS WAS ALL PREVENTABLE.

Does anyone have any words of wisdom. Also I am only halfway through my third month since being floxed (took Cipro for 5 days). I can't believe the damage it's done to me... BUT a big worry is... Do I have any new things to "look forward to" ? I remember reading early on that the intense muscle pains start around six months, is that true??

I would especially like to hear back for comparison sake, from people who took Cipro less than one week. Since all doctors keep insisting, rudely at times, that there is no way that lasting effects can happen unless a person took it longer (one said two weeks the other two said a month or more). But my feeling is everyone is different and it really does not matter, how long a person took it.

Lastly - if doctors do not know what the heck this stuff is or does - and neither does anyone seem to or else Bayer is'nt saying - THEN WHY do they give it to ANYONE. They are poisoning innocent people !!!!!!!!!!!

PS I asked a relative to look up fluoride poisoning, the symptoms are much the same as we have... But I asked a pharmacist friend (of a friend - I had'nt known we knew a pharmacist or I'd have askde him about Cipro to start with before ever taking it - but I was ill and not really able to do much research beforehand, my doctor both shamed me into taking it plus lied about hte seriousness of my condition so I was scared NOT to take it and he refused to give me regular penicillin - are the kickbacks they get really THAT good ?).

Anyway I asked a pharmacist friend about fluoride poisoning being the real culprit ? He only said "there isn't that much fluoride in it". Of course - doesn't answer the question or give us an idea - well how much does it take to poison someone anyway - if their body for some reason cannot metabolise it properly and flush it out ? I did read one place, www.thyroid-info.com, I think, that only 2 mg of fluoride a day (like, in toothpaste) is enough to compromise the thyroid.

I guess I better start a new letter for my other question. Sorry but I store all this stuff up for when I feel well enough to post. Thanks for bearing with me everyone.

20613 From: wendyvogt <wendyv@c...>
Date: Fri Nov 12, 2004 10:00pm
Subject: Floxin -- Until now I had no idea why my life has been ruined...


I was given Floxin for an infection after having surgery. Four days
into it, I had doughnut-sized hives all over my body. Stopped the
medication, was given steroids to clear up the allergic reaction and
then my body shut down. Literally. I thought I was dying because
of the excruciating pain in my body and joints. To this day I'm
still trying to get my body back -- I will read through the other
emails in this forum to see if my "bad spells" are something you
guys go through because even the docs at Stanford can't explain them
or make them go away. They go like this:
* It is like someone turns on a switch -- my heart jumps