June 2004 Post Marketing Report

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

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

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

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

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



Thanks, I appreciate it.



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

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

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

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

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

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

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


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

Dear Lady,

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



Mark H

19004 From: jeanhanna212 <jeanhanna212@y...>
Date: Wed Jun 2, 2004 2:07am
Subject: My story- please help

My story is as follows: I had UTI symptoms back in December and was
given Cipro/Levaquin for 2 weeks. I then experienced sharp back pain
followed by a blurry vision episode lasting 2 hours. My current
symptoms are: severe muscle stiffness esp in my ankles in the
morning, numbness everywhere, bone pain, wrist pain, pain is more
pronounced in the right side of my body, joint pain, head pressure,
sense of feeling my heart beat, numbness and pain in the outer tips
of my fingers, itchy skin, red blotches on skin, coldness and hot
flashes, urinary problems(urgency and burning), extreme fatigue,
muscle weakness.
I went to see a neurologist and she did a neuro exam and blood tests
ANA (1:40),CBC normal, rheum neg, thyroid- all relatively normal.
She then thought it was stress related and all in my head. I tried
to explain to her that it could be drug related, which I explained
clearly because I am a pharmacist. She said she never heard of that
and doesn't think I need an MRI. But I am so paranoid that all the
symptoms could be a disease. I was a healthy 24 year old before...
What should I do? I am scared...


19005 From: garym52 <ggmab@f...>
Date: Wed Jun 2, 2004 2:19am
Subject: Re: My story- please help




I would suggest magnesium supplementation. There have been many
people on the board that seem to have success with it. I personally
didn't notice much improvement from mag., but it is worth a try. If
you want to try meds., neurontin really helped me. In fact, it gave
me my life back at a period when I almost had given up hope. 8
months later, I'm off of it. I still have profuse muscle
fasciculations, but the muscle and joint pain isn't quite as bad so
I no longer needed the neurontin.



Good luck,
Gary


19007 From: coop86quin <coop86quin@y...>
Date: Wed Jun 2, 2004 3:34am
Subject: Reaction to Avelox

I am a 54 y/o urgent care M.D. who is rehabing an acl tear of my
right knee with reconstructive replacement with a cadever achilles
tendon done on 10-31-03. As many of you may know, this injury
requires months of intense progressive physical therapy. I was
progressing well and had started a running program until 5-28-04,
when I noted that my sinus infection was not improving with
augmentin. As per the Sanford Guide to Antimicrobial Therapy,in the
case of "severe disease" associated with clinical failure after 3
days,only quinolones are listed as the next line of treatment. I had
had ENT evaluation and sinus surgery was advised. To hopefully avoid
surgery,I decided to start Avelox. Interestingly enough, the Sanford
guide was given to me by the Avelox drug rep.. I took one tab and the
next A.M. I woke up with the most pain I have ever had in my life in
my left leg,back and hip. I was barely able to crawl to the restroom
where I noted that my leg from mid-calf to my entire foot was
reddened and swollen with all tendons being painful. There were also
symptoms of confusion, depersonalization, and basically panic. I have
not had much improvement since that time and have spent the last two
days working my 12-13 hour shifts, limpimg from exam rooms. I have
reported this to Medwatch, but after almost 30 years of primary care
practice,I have no illusions that the government, drug cos, hmo-
insurance cos. will make any real effort to look into this apparently
rapidly spreading poisoning of the american public. I also have read
several hundred posts to this site, and realize that most diagnostic
tests will not be significnantly abnormal and seem to be of little to
no value as well as any real treatment having any significant impact
on these symptoms. I am taking extra calcium and magnesium that were
advised on another wwbsite. To me, this is truly the "perfect storm"
for the drug cos.with the pts. with adverse reactions appearing as
neurotics and no definite diagnostic tests seemingly available to
document or predict the course of these reactions. I can assure
everyone that in these days of managed care, M.D.'s really have
little influence in health decisions on any significant scale and
this quinolone situation is quite representative of the type of
health care that will be administrated in the foreseeable future. I
know that I am rambling here, but I once had private practice,for 15
years, where all office visits were $25.00 and the pts. had a real
person to talk with and their care was not decided with corporate
profits as the prime motivator. I can only offer my empathy and
compassion to everyone who has been harmed by the health care system.
P.S. Yes my feet are also burning and often numb similar to pts. with
neuropathy

19009 From: <sweet1956pea@a...>
Date: Wed Jun 2, 2004 7:11am
Subject: quinolone toxicity vs. chemotherapy

Hello All ~ hope life has been treating you well recently, despite the
various maladies brought on by the poisoning from quionolones.

I have an interesting input ~ I had my first round of chemotherapy yesterday
(for treating the breast cancer diagnosed about a month ago). I can honestly
say, I had been much improved from the floxing after starting
homeo/nathuropathic remedies/treatments.

Well, guess what. Today, again, I am having many of the same "symptoms" as I
had with the quinolones. I do not believe the "quinonolone damage" is
flaring ~ I am certain it is the chemo drugs causing this ~ and to me, another
indication that quinolones can be toxic and cause toxic damage in many people, much
more than the doctors know, but how well we know. To me, it is one in the
same.

that is all I have for input right now.

Hope you all do well today.

Take care!

Patti
19010 From: shelli <golubshelli@y...>
Date: Wed Jun 2, 2004 11:40am
Subject: Re: update and questions

I am also the significant other of a multiple dosed quinoline victim. Each time he received prednisone in the past he got WORSE. And on top of it, it caused significant depression (almost suicidal) and weight loss and then gain. I wish his doctor would admit it was the multiple doses of levaquin and cipro, but he does not. He STILL want him to take the Cipro again even after sending him multiple articles on the affects. Gregg is at the one plus year mark with no relief. He just went through IV Lidocaine treatments twice for the burning. The first treatment helped a little, the second made things worse. So now he is undergoing multiple blood tests to see if they can adjust things hormonally (sp?) to help. He burns constantly, is red most of the time, has twinges in his legs and arms, and severe joint pain. He lost his job and has filed for disability. The insurance company has denied it and we have gotten an attorney to fight them. Social security has also denied him, but
that is their normal process and we are fighting that as well. I wish I could have given you more positive information, but I would be cautious with the prednisone. Altho it can be a powerful aid (it helped me with RSD), it can also be a danger as I have seen with Gregg. Would love to hear some success stories and how you beat this!!!!!!!!!!!

19011 From: shelli <golubshelli@y...>
Date: Wed Jun 2, 2004 11:48am
Subject: Re: Re: My story- please help

Gregg is on Neurontin, but we were told that you could not take magnesium AND neurontin - that one negates the other and that you need to allow at least six hours between each. He is on 2400mg daily (4 600's). That doesn't allow enuf hours in the day to do that! Did you take them together?

Shelli


19012 From: shelli <golubshelli@y...>
Date: Wed Jun 2, 2004 11:57am
Subject: Re: Reaction to Avelox
As a medical doctor you CAN do more than offer your sympathy. You can TELL OTHER DOCTORS TO LISTEN to their patients - you can tell the world!!!! Gregg and I desparately tried to tell his primary care doctor that his "care" was MAKING Gregg sicker. He STILL doesn't believe that. Until doctors stop functioning with their egos and really start listening (AND our government starts putting REAL warnings on drugs that cause problems) these issues will never go away, they will get WORSE. I am sorry if this seems like I am coming down on you - I am not. I am sorry you are in pain, but I watch the love of my life suffer daily and I am ANGRY that no one seems to be able to do anything about it and that the doctors he is seeing now still shrug off the "quinolone theory" as unreal !

Shelli
19014 From: garym52 <ggmab@f...>
Date: Wed Jun 2, 2004 7:49pm
Subject: Re: Reaction to Avelox


Sorry to hear of your troubles, I can relate. I too had acl
reconstruction except i used a piece of my own patella tendon for
the repair. I've also had mcl reconstruction on the same knee.
Anyway, the problems you are experiencing are very common on this
board, and unfortunately there isn't a lot that can be done to
help. I would continue with the mag/cal supplements as many here
have reported improvements from there use. The only thing i have
read on this board that really helps is time, and sometimes a long
time. Hope that you recover soon, and please don't ever rx these
drugs unless they are 100% necessary to save someone's life. So
many of us, including myself were given these drugs with little or
no cause. In my case, it was for a suspected UTI. I was told to
take a 7 day course of 500mg twice daily of cipro. I did, but my
culture came back neg. So i didn't even have a uti. There has been
a hell of a price to pay for that one rx.

Good luck,
Gary


19015 From: shelli <golubshelli@y...>
Date: Thu Jun 3, 2004 11:59am
Subject: Re: Re: My story- please help


That's what Gregg is going to go to too - the 2400 is too much for him. Even tho' it is on the rx info, we talked about it yesterday and he is going to start taking both together today and see what happens. He can't get much worse - the burning is so bad I can FEEL the heat emmanating from him. And interestingly enough, another side affect is that he does not sweat at ALL. For a man that used to work out and sweat PROFUSELY, it is MOST unusual. Hopefully the blood work will show SOMETHING that the doctors can use to help him. (Current hope is the endocrinologist - the pain management doctor and neurologist have basically written him off (ie "What do you want from me - I have no magic shot that will make your pain go away" - quote unquote after the last IV Lidocaine treatment).

Shelli


19016 From: <WAlakhdar@a...>
Date: Thu Jun 3, 2004 8:33am
Subject: Re: Re: My story- please help


I don't know if this will help, but recent blood work showed my Magnesium
levels are dropped off the low end of the chart. My doctor was shocked and said
he has never seen that bad a problem. He has put me on B-12 and Magnesium
shots once a week that I administer at home. My husband gave me shots last
night, and I slept like a baby for the first time in months. This morning, I
have a dramatic reduction in muscle pain. I should note I did not have this
problem ever in my life until I was floxed on Levaquin and Cipro. Although I
still have a long list of debilitating problems, the relief I feel this
morning is very soothing and encouraging.
Mary



19022 From: John Edward Roe <angelbab@s...>
Date: Fri Jun 4, 2004 4:49pm
Subject: Re: Can I take Zithromax?


Hi, I, too, am a fellow quinolone sufferer, and used to take Zithromax for infections, but last December I developed a respiratory infection and was still in my air casts on both legs for achilles tendon problems, (no surgery yet), and began the Z-pak and 48 hours after I had started, my tendon problems got much worse. I was in physical therapy and my therapist could not believe that we had made so much progress for the previous several months, to have my tendons flare up again. Additionally, that same day, I went to my orthopedic doctor and she too was amazed at how I had reacted. I was sent to 3 surgeons for evaluations following 3 MRIs, one of each leg, and one of my shoulder. I had to have arthroscopic shoulder surgery to repair my tendon and remove some spur material, and the 2 other surgeons, by the time I got to see them about a month later refused to do my leg surgeries. My shoulder one was done the end of January, and this would have been in March, I think, and then my
achilles tendons had settled down a bit. I still keep my air casts handy for flare ups, but I have had a terrible time with my shoulder-just finished my therapy on it the middle of May, and still have pain from time to time. I have fibromyalgia as well as arthritis, so I know that they play a part too, but it has been very hard for me. My orthopedic doctor and my general practitioner are both very concerned for me and meds....just about 3 weeks ago I got another respiratory infection, went to a fill in doc for treatment since mine was unavailable, and tried K-flex-took if for 10 days, thought I was well, and then the infection came back full force. Am currently on Augmentin, and so far, am doing better. Still haven't got my reports back on the lab work, the chest xray, or the throat swab, so I am not sure if I am completely healed or not. One thing my general doctor said was that she was so worried about me because as she said-one day I might get an infection and she will be
powerless to find the right medication to save my life, and I might not make it. She strongly tells me to stay completely away from anyone who is ill-to not take chances with catching the disease, so I try. But, I sell real estate for a living, so it is hard, but believe me, I do try. My suggestion for you on Zithromax is to be cautious-you never know....and incidentally, when I had my first bout the the achilles tendon rupturing was in 2000, and I had been given a Z-pack just before then, but could find no quinolones-then was given Cipro and Levaquin for urinary tract infections just in time for the tendons to rupture again in 2003, so I am a mess. Good luck....NR


19025 From: Jeanne <frekkie@e...>
Date: Sat Jun 5, 2004 0:42am
Subject: med article from Germany

I 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 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

19028 From: chinacat6142000 <chinacat6142000@y...>
Date: Sat Jun 5, 2004 3:20pm
Subject: My Cipro story


My story started around May20th . I had this weird buzzing in my feet
and a little at that time in my hands. The buzzing would go up my
legs. I went to my PCP and she said from what I told her (burning
urination) to get bloodwork and urinalysis. After lab start Cipro Xr
1000 for 3 days. Wellllllll, lab came back with cocci so she called
in another 5 days. First day ankles, elbows, any other joints just
hurt. Went to work for 45 minutes only! Oh sorry she also gave me Rx
for xanax for "my nerves" (buzzing feet, ha!) This was now Tues.
Wednesday still same joint pain now worse buzzing has now changed to
tingling in my fingers and toes. Felt like when you were a kid and
you were out too long in the snow and put your hands under water,
tingling burning sensation. Made it 7 hours at work feeling awful,
like a flu and hand sensations. Thurs. called out. This is when Dr.
called in extra 5 pills because of lab results. Mom went to the get
the RX and asked the RPH about my ADR's. He said yes those are ADR's
but since it is a bad infection better take the meds. Fri. started
out pretty good. Then things got really weird. I took this pill every
day at 2PM. Stayed home again and my feet felt like they were on
fire!! My fingers and toes were full force tingling. I am 39 years
old and crying like a baby at my Mom's house. My body and mind felt
like it was turning on me! Now these ADR;s morphed into Pin pricking
sensation from my feet to my face ontop of the tingling. I thought I
was dying. The joint pain was the only thing that eased up. I thought
I had Ms or Guillane Barre or something. I was hysterical. These
sensations were maddening. I took the xanax too calm my head but it
did nothing for my nerves, because now I see it was not nervous
nerves ,but real nerve ending nerves they are fried. Saturday I
secluded myself thought I would give my Mom a break. By the way , Fri
was the last time I took the Cipro xr 1000. I made it five out of the
eight days.
Sunday and Holiday Monday just stayed in bed with all these weird
sensations going through my mind and body. I also have a husband and
12 year old son. I did not want my son to see me crying all the time
(which is not usual for me) so I stayed in my room. Tues I go to
work tingling and zapping. It was very hard. Wed same deal and go
back to Md. I told her of all these things and she told me to make
appt. with allergist which I did. I go June 17th. Thursday make it
only 4 hours my face is tingling and I leave. Go to Moms she says my
upper front lip is swollen! Ok. this in nuts. We call Bayer and
leave a message. They call back and the woman took my information and
said they take ADR very seriously. She wrote down all my side effect
s and I also tell her that in March I was in the ER with kidney
stones and they had given me an Cipro IV drip and left with an RX for
500mg BID. After tranfering me to a Bayer clinician I now feel the
initial buzzing in my feet was an ADR from the iv treatment and
follow up medication for a week, even though it was two months later.
The reason I say this is because she said the cipro stays in your
feces for up to a week but the ADR's can last for weeks to months
after taking Cipro. This was a Bayer representative telling me
this ! I was floored. I asked her if there was and "antidote to this
antibiotic and she said drink lots of water and she feels sorry for
me and my condition! I could not believe she validated every sided
effect to tell you the truth, but now I know I am not crazy. Because
in between the iv deal I would feel a slight vibration inside by
where my pelvic bone would be. My friends just laughed at me . It
does sound funny when it is not happening to you. You see I was
vibrating and buzzing before this last go round of Cipro and now I am
in a living hell. I thought the pin pricking eased up but it came
back last night. It seems to wax and wane? I am depressed and
crying a lot which is not like me. I don't want to go anywhere, just
stay in my room. I know this is a long story , but thanks for
listening. Right now the Zapping, like little stings are just random,
in my hands I guess from getting them strirred up from typing. They
go up my wrist. Oh , PS. Mom was at a retirement dinner for someone
at the Hospital and she sat next to a Dr. she knew for many years and
he stated giving someone Cipro xr 1000 for eight days for a uti in
his opinion was like giving a mosquito and elephant shot!! Why not
start on something milder.
Thanks again for listening. Tracey


19029 From: chinacat6142000 <chinacat6142000@y...>
Date: Sat Jun 5, 2004 5:30pm
Subject: I forgot to mention a couple more ADR;s


I think it is important to mention all the adverse reactions that I
had after taking the cipro. I forgot to mention fatigue, a funny
taste in my mouth and inflamed tip of my tongue and
tremors ,especially when I am still and lying down. They subside I
guess when I sleep. ?
Thanks Tracey


19030 From: <WAlakhdar@a...>
Date: Sat Jun 5, 2004 5:24pm
Subject: Re: Can I take Zithromax?


Well, I take biaxin. I have no choice but to continue taking antibiotics
from the point of being floxed onward. I take them because I have late stage
chronic lyme disease, and my treatment requires them. I have to say I was
first floxed in February with Cipro, and then went on to Levaquin in March,
despite hardly being able to walk from the fifth day of Cipro. My doctor was
unaware of the harmful complications of these medications, and kept telling me
that I was only reacting to the lyme disease being treated. \

Unfortunately, he was very wrong, and now I am disabled. I have been making
slow progress that I can only see by looking over long periods of time like
the three months since being floxed. I have been on biaxin the entire time,
yet I am still making the slow progress to be better. I don't know if I
would be getting better faster if I weren't on any antibiotics, and I'm too
scared of the horrible effects of lyme to stay off medication.

Don't know if that helps. I can tell you that biaxin does nothing like
cipro and levaquin did to me. Maybe it would be o.k. for you to try and follow
your pain. If it hurts, stop.

Best of luck,
Mary


19032 From: John Edward Roe <angelbab@s...>
Date: Sat Jun 5, 2004 9:35pm
Subject: Re: Re: Zithromax question


Hi, just a quick note on the Zithromax question. I am a respondant who had both legs with achilles tendons involved in rupturing as well as a shoulder tendon which was affected. 48 hours after having begun my Z-pak, I had a full blown relapse making it necessary for my orthoped to order 3 MRIs, one on each leg, and one on the shoulder. Had shoulder sugery to repair one tendon in Jan of this year and went to two other surgeons for evaluations on my achilles tendons...wouldn't touch me-felt that it would be a too hard procedure for me based upon all my other issues...I have fibro as well as osteoarthritis...said to keep my air casts handy for my legs when the tendons flare and get off my feet and rest. I too have a wheelchair that I use when I cannot ambulate well. Interestingly enough as well, when I have a severe bout of a respiratory infection, or influenza or whatever, my fibro, or whatever else is going on with my immune system kicks in and I cannot ambulate well, have to
resort to my quad cane again and be so careful. Additionally, I too have bouts with severe stiffening of both of my legs most usually when I am in bed at night-very painful and I cannot place my feet flat on the floor-legs straighten out, and become ridgid with pain-have to have my husband to help me stand and try to rub my legs for ease of pain. I take medications to prevent it, but when I overdo it and am on my legs for longer periods of time, I pay for it. Wish there was an answer for us who suffer from use of these drugs....my general doctor fears for my life, literally, for she says she is fearful that one day I will contract a disease of some kind, and she will be virtually powerless to prescribe something to help me for fear of reactions, and I might die...nice thought, huh? Oh, well, I just plug along and try to stay away from contagious people! NR


19035 From: Mark <mitrerom@c...>
Date: Sat Jun 5, 2004 10:38pm
Subject: My story and management (and a magnesium question)


Hello everybody!!!!!

Before I start I want to share a long lasting healing mental hug
with you all. I feel like I want to take all those hellish symptoms
away from you. I really do feel it very very strongly. So, as from
tonight and every night I am going to pray specifically for us all.
I`m not particularly religious but I do feel there is "something"
out there and I`m going to ask it for it's love, healing and
regained health for us all. The only other thing I can do is fight
to get this "syndrome" of adrs recognised officially and maybe one
day with enough shouting we can get this evil in the World banned
for good. Perhaps even get those who have hurt and killed so many to
turn their research into helping us. (Hey, can't you tell I`m on a
good day today!) Before i go on tho....Recommended Daily Allowance
for magnesium ehre in the Uk is 250mg. I`m on 500mg (250 x 2 a
day)...is this good? bad for me? I feel better for it and thinking
of raising the levels.

Right then. Really, I just wanted to share my story although it is
very early days for me. I apologise in advance if my story seems a
long one. I also apologise for any disjointedness and spelling
mistakes. My concentration is not as it should be (a lot of you may
recognise that one).

I`m a UK guy (by the way, are there any UK quinolone sites/groups
out there??? after searching I can't find any - WHY?), my name is
Mark, 33 and took Cipro for 4 weeks(!jeez if I knew then what I know
now). I can't remember if it was 250mg twice a day or 500mg twice a
day (memory screwed) in order to treat prostatitis that I had
suffered for 7 months.

Now, exactly a year ago I took 3 lots of antibiotics for an ear
infection and I havent really been well since so I`m assuming one of
those sets of antibiotics was a quinolone. I will discover if so
later this week when I visit/confront my G.P. After that period (the
ear infection didnt go away) i suffered lots of tingling, itchy skin
and as a result found it difficult to sleep (poss quinolones again)
but I put it down to the extremely hot summer we had in the UK last
year.

Ok, wind forward a few months (October/november 03), the ithing,
burning, tingling skin had gone but I was full of self misery and
had really strong suicidal tendencies. I couldn't see any point in
living at all. But, I was still feeling the effects of a split of a
long term relationship, had rather terrible bad neighbour trouble,
my job wouldn't afford me to buy my own place in this madness of a
housing market so, hey, maybe it was reactive depression with a
nudge from possible quinolone poisoning. ....It just now seems
really odd to me that i had such strong suicidal feelings. It's not
the me i usually know. And now I understand that quinolones can have
effects way into the future....well, i`ll be more certin once I talk
to my gp.

OK, so....fast forward again to March 04. I'd been having some
really odd symptoms. Burning on urination, swelling between my legs,
even some pus (gross but it draws a picture) and a fair bit of pain.
I'd been tested and treated for Gonorrhea, Chlamydia, Syphillis,
Hiv, and another one I can't remember. All this took about 12 week
and obviously a lot of antibiotics. I`m amazed at the incompetence
fo the doctors and nurses, I really am. It astounds me. So, on my
6th visit to tell them nothing has changed I see the consultant.
He's he guy who checked me out, said he couldnt see anything wrong
but when i told him it felt liek i had a golf ball up my bum he
mumbled something about prostatitis and gave me a prescription for
the Ciprofloxacin. At no time was I told about any side effects (I
didn't think to ask coz well...I guess one just doesn't sometimes).
At no time did he say if there are any odd reactions to stop taking
them. At no time was any hint of such a thing mentioned to me.

Now, when I look back, it was within a couple of days that my knees
really started to hurt (they already had felt pretty bad so I`m
wondering if I'd been `floxed before) and my anxiety levels were
already a little high..in fact thinking about it I can remember one
set of antibiotics around mid february I was so glad to get off
aftee a week because I had been so tense for no particular reason
and finishing them I felt like I could breathe and relax again. Hmm,
had sleep problems at the time too I recall. hey, suspicious or
what!!! I must call them Monday morning and ask for a list of
everything I've had......Anyway, I`m sure it was within the first
week that i noticed the tremors. I put it down to too much caffeine
and carried on working although I was really concious of it. At the
start of the second week I had a massive fever along with terrible,
terrible diarrhoea...but there was a bug going around at work so
didn't think any more of it. I had noticed my anxiety levels through
the roof but again just focused on finishing the course and look
forward to the relief and relaxation. Bizarrely enough I didn't
realise that it wasn't affecting my prostate in the least. Things
were pretty stable for the last two weeks although I did feel my
mind was whirring on overtime constantly, I was smoking 20-30 a day
(when I`m a five a day man) I just couldnt get enough cigarettes
down me!!! I felt liek I couldn't get enough food, drink, whatever,
as if my appetite for everything had gone crazy.

The big day came!!! No more Cipro!! I was rather anxious about it
since I was disappointed that my prostate still throbbed and hurt
and guess what!! My hips and tummy now felt like I was having knives
pushed into me and being dragged down towards my knees. It was
painful enough for me to get really down and for it to stop any
activity and killed concentration. I cannot remember much of the
week that followed. I cna rmember just feling disappointed about my
prostate and just doing being very spirit less and bearing the pain
in my hips, stomach and knees. Then I weekend away that i had
planend in order ot get me some space from my now fairly quiet
meighbours. And Boy! I wanted to enjoy myself. And by God I did!!! I
ran though woods, I ate rather well, and ran on beaches, and took
some great photos...BUT at the back of m mind was a niggle. I knew i
jsut didn't feel quite right. Something was missing. I guess now
that the something was a part of me. my "me-ness", my personality.
Something had just disappeared. i was still sort of me but not
entirely.

So, I get back from this great breather of a weekend and within a
few days my knees felt liek theyd neve done before. I could hardly
walk, my hips were agony, every 4/5 days i had what felt like food
poisoning, I had tremors, I was tense, angry, confused, wondering
wheter I was being poisoned by my tap water, my skin was itchy,
burning, and at times as if I'd got thousands of tiny wooden
splinters all over my body.Even a breeze was agony. And this is when
i had the good fortune to just ponder the possibility that those
tablets had caused this. I searched the net and found many many many
thousands of people suffering like me, some worse, some better. I
thank God and whatever Angel is watching me that one of the first
posts I received contained a menion that Magnesium can help. (I come
to that later)
Afte probably my fifth bout of "food poisoning" in a fortnight my
mental faculties just disappeared!! I had no idea what was going on
around me. Had no real idea where i was. I felt no real connection
to where I was or what was going on. I was/am so disorientated I
feel I can't walk in a straight line, even reading is a struggle )I
can read the words but getting the sense and meaning of a sentence
just doesnt happen at times - tough in my job a a proof reader) And
by God, (actually I really want to swear but won't) it is so damn
scary and frightening and upsetting. "Luckily" I suffered a lot of
anxiety as a kid through being abused sexually and tho its as hard
as hell, I guess I`m lucky to have learnt strategies (dusty and
rusty tho they are now) for coping.

Having read the mention of Magnesium, I rushed out (well, hobbled
for quite a long time) and didn't care whether they cost more than I
earnt because i was so desperate. I tried. For me it does take the
edge off my symptoms, makes them a little more managable. I have yet
to try Calcium too. AND WOULD YOU BELIEVE IT>>>>> 2 days after
taking the Magnesium MY PROSTATE IS FINE!!!! Also, my back which had
clicked and ached chronicly between my shoulders for a year or so
has disappeared. And the disorientation and disconnected feelings
are a little beter and get better day by day but I still have some
really bad moments. So.....evidence suggests I was floxed
previously. i just know it in my bones.

This is a list of everything I have/still am suffering.

Painful, deep "bone" aching in my hands/ feet sometimes neck
Legs and arms feel unco-ordinated
Legs and arms have deep bone aches
Kneecaps feel as if theyre being hacked off with an axe
Knees feel as if the bone crumbling when I walk
Pain either side of my groin
Pain from my groin down to my knees via muscles/tendons
Cold knees (really freezing!!!!)
Nausea whenever/whatever I eat (this is fairly new)
Diarrhoea often
Burning skin, itchy skin, "A thousand wood splinters" skin
Inability to concentrate "normally", can do short spurts
Disorientation - up and down and round and round. Bloody awful
Depersonalisation / dislocation - thats the worst mental one. It
really scares me and could set of a lot of panic attacks if I let
it. I get by by allowing myself to breathe deep and easy and
becoming "involved" in whatever activity there is to distract me.
Its gonna catch up some day tho
Really horrible headaches
Feeling as tho my nose is being pushed into my face
Feeling as tho when I walk, I am walking immersed in water
Sleeping pattern totally disprupted - periods of inosmnia with
periods of too much sleep.

And right now I seem to have completely lost the point/ my train of
thought. Sorry. If this email helps anyone then Im glad ive been
able to help.

If anybody out there (especially UK) feels like commenting / passing
any ANY advice or just getting in touch to say Hi then please do.

Peace and ease be with us all, coz we blooming deserve it.

Mark


19038 From: jeanhanna212 <jeanhanna212@y...>
Date: Sun Jun 6, 2004 3:29am
Subject: weird rash on face.....anybody know?

I have been getting this weird bumpy rash on my face, which lasts a
few days and then goes away. I seem to get this rash every 2 weeks
or so. The rash just looks like tiny red little bumps on my cheeks
and middle of forehead. This is like a malar rash seen in Lupus
patients. I tested twice for lupus and my ANA titer was 1:40, which
is still considered neg. My inflammatory markers were also neg (ESR,
Rhem). I know people have said they have gotten skin problems with
the quinolones but did anyone get something similar to this? Do
quinolones cause autoimmune like reactions? Is the autoimmunity
permament?


19053 From: Mark <mitrerom@c...>
Date: Mon Jun 7, 2004 9:06pm
Subject: Tendinitis / tendinosis & quinolones

Hi guys,

Well, guess what? It has been oh, 3 weeks since I finished
ciprofloxacin. I have posted previuosly as to my symptomsso far but
today my left hand was continually spasming and causing my fingers
and thumg to "claw up" into a ball every few seconds. It has eased
as the day has progress but recognised it as capral tunnel syndrom
or RSI (which my mothersuffered for a while)...but...I get home from
work (btw my left hand does nothing at work so its not really
repetitive strain injury coz the well, I`m right handed) and this
evening my whole body seems to ache with pain. Feet, hands, elbows,
and particularly my inner thighs. Now, being an intelligent chap I
start looking up tendinitis on the internet (because that's what rsi
is basically) but discover this document. Quite an eye opener for
me. http://www.sma.org/smj2000/maysmj00/casparian.pdf

So, it seems they know about quinolones adn tendinitis/ tendinosis
Also, has anybody here suffering/recovering from Tendinosis? (the
all over body version of tendinitis) because if you are out
there,I'd love to know how you wer diagnosed, treated, length of
recovery, how its going...anything to give me hope!!!!!...or even
prepare for the worst :-( PLease. I`ve got too much else to suffer
and try to heal without this too. Pain management techniques
espcially welcome.

Love & prayers to all as always

Mark


19054 From: Laura <lparker30@c...>
Date: Mon Jun 7, 2004 10:13pm
Subject: I hate to be a pain and ask...
prolly a stupid question but hey no stupid questions right?
anyways... anyone else have a feeling in there face or forehead that feels likethe skins too tight that along with permanent wrinkling of the forhead...
thats whats happening to me and its freaking me out.



19058 From: <WAlakhdar@a...>
Date: Mon Jun 7, 2004 9:50pm
Subject: Re: Tendinitis / tendinosis & quinolones


Hi Mark:

I had tendonitis all over my body, but mostly in the legs, and my knees, in
the beginning and still largely now, seem to be totally useless. But as
these three months since floxing have gone by, I have begun to see baby steps
towards recovery. I am hopeful. I will continue to pray for you and all of
us.

God bless,
Mary
19059 From: Fran Salomons <fsalomons@y...>
Date: Tue Jun 8, 2004 2:31pm
Subject: Re: More frustration

After being floxed by cipro/levaquin in late Feb and having major tingling, numbness, severe anxiety, sore wrist, knee and heel for months, I am finally experiencing noticeable relief after starting a program 2 weeks ago (on the advice of a 20+yr pharmacist turned master herbalist) of the following:
300-400 mg. daily of alpha-lypoiec acid (this rebuilds nerve damage) , AOR R+ Brand is the best;
300 mg daily of SAMe (this helps with the mood and anxiety problems) Jarrow's Brand is the best;
and as much magnesium and B100 vitamins as my body can handle.
After experiencing an almost fatal pulmonary embolism from a low dosage estrogen med a few years ago, I wasn't about to take any more medication!




19066 From: coop86quin <coop86quin@y...>
Date: Tue Jun 8, 2004 11:22pm
Subject: Took one Avelox and can no longer walk


This my second post after taking one avelox tablet on 5-28-04 with
subsequent severe left leg pain and inability to walk,along with rash
over my left foot and lower leg. I must apologize if my first post
was somewhat cynical and depressed, those were certainly my feelings
at that time. Since that time I have posted my story on
fqvictims.org, downloaded the petition noted on this website, and
written letters and e-mails to my elected reps. in D.C.. What has
really angered me is that during much research, it becomes quite
apparrent that the drug cos. have continually come out
with "new,safe" quinolones which seem to pass the FDA requirements
but cause significant,severe, disabling adverse reactions in the
general population i.e. Raxar, Trovan, Tequin(now banned in
Europe?). This seems to be a regular cycle for the drug cos., and of
course they make a fair amount of revenue while the ADR's are getting
sorted out and they can come up with another "new safe" quinolone. I
am not a research scientist, but it seems like saying that, if we add
a few accessories, the old Yugo would actually be a good automobile.
An article at medicinenet.com quoted a study by Dr. Bruno Stricker
from Erasmus Med Centre in the Netherlands which was reported in the
Archives of Internal Medicine that found that quinolone users were
more than 4 times as likely as a non-user to have a tendon rupture.
Quinolone users in their 60's and 70's were 6 times more likely and
those in their 80's and 90's were 20 times more likely to have
ruptured tendons than non-users. As an M.D. in practice I can say,
from my experience,I feel that these adr's have been minimalized in
any communication that I have had with drug cos. or their reps.. An
article first published on 10/20/03 that I found at the Journal of
Pharmacology and Esperimental Therapeutics website revealed that "all
FQ's showed moderate cytotoxicity to tendon cells after 24 hours and
more severe,significant toxicity after 72 hours on tendon cells. Like
Vince Lombardi once said, "What the hell is going on here"? These
adr's are well known to the scientific community, so where are the
organizations and agencies that are supposed to protect the public?
Do not give up, keep researching and communicating with elected
reps..


19067 From: Angel_8384 <lparker30@c...>
Date: Tue Jun 8, 2004 11:45pm
Subject: Re: I hate to be a pain and ask...


not sure about the palsy thing nothing drooped I think but later
after the forehead felt better then m cheeck felt weird and I seem
to be drooling more but that maybe my sinuses I think not sure but
its all driving me nuts. one minute I think I have everything from
rabies to tetanus to anthrax to everything else in between...lol


19069 From: jeanhanna212 <jeanhanna212@y...>
Date: Wed Jun 9, 2004 4:18am
Subject: can only one eye be affected?

I have this vision problem that only seems to affect my right eye. I
have this pressure feeling and blurry vison episodes only in my right
eye and it is worse when my body temp heats up. It also seems that I
get more muscle pain and stiffness on the right side of my body.
Does it make sense that is it concentrated only on one side?


19070 From: Rex Wockner <rex@c...>
Date: Wed Jun 9, 2004 7:06am
Subject: Re: can only one eye be affected?

All my vision issues as well as my two-month weird headache-like thing
were on the right side.
19071 From: Laura <lparker30@c...>
Date: Wed Jun 9, 2004 8:33am
Subject: Re: can only one eye be affected?

actually yes it makes sense to me a little bit mine is worse in my right eye
as well i cant even see five feet out of it without it blurred or
distorted.
the other is a little bad for me but right is waaay worse. all my symptoms
were all on my left side first then switched to all sides after I say about
3 or 4 months.


19073 From: toomuchpsi383 <toomuchpsi383@y...>
Date: Wed Jun 9, 2004 1:42pm
Subject: Re: can only one eye be affected?

Levaquin messed up my left eye.. It has permanent blured vision.. My
right eye is still 20/20. It is able to compensate for my left eye
but does acuse headaches now and then from straining to compensate..
The left eye is not terrible, but it does suck knowing this poison
damaged soo many parts of my body.. I have recovered from most of the
damage ecept the eye vision and ringing in the ears.. it has been
over 2.7 years now.


19074 From: Rex Wockner <rex@c...>
Date: Wed Jun 9, 2004 8:49pm
Subject: Re: can only one eye be affected?

Well, except for the floaters, which
are in both eyes...



19075 From: Rex Wockner <rex@c...>
Date: Wed Jun 9, 2004 8:51pm
Subject: Re: Re: can only one eye be affected?

I've recovered from most of it too. Remaining problems are the occasional
feeling of something in one Achilles tendon, and tons of eye floaters that
were never there before. I was floxed 10 months ago.

19076 From: raghlg <raghlg@a...>
Date: Thu Jun 10, 2004 1:18am
Subject: Transfer of Cadrofloxacin into the gallbladder tissue and bile - Japan

Transfer of cadrofloxacin, a novel fluoroquinolone antibacterial,
into the gallbladder tissue and bile]

[Article in Japanese]

Tanimura H, Ohnishi H.

Wakayama Rosai Hospital, 435 Koya, Wakayama-shi, Wakayama 640-8505,
Japan.

Clinical pharmacological studies of a novel fluoroquinolone
antibacterial drug, cadrofloxacin, were performed in 12 surgical
patients by investigating the transfer of cadrofloxacin into the
gallbladder tissue and bile. They were scheduled for cholecystectomy
(n = 6) or had undergone a percutaneous transhepatic biliary
drainage (n = 5) or gallbladder drainage (n = 1) at the Second
Department of Surgery, Wakayama Medical University. A single dose of
cadrofloxacin was orally administered to all patients at a dose of
200 mg. The results were as follows: 1) Serum and gallbladder tissue
levels of cadrofloxacin after 2.9-5.7 hours were 0.6-2.5
micrograms/ml and 0.6-8.6 micrograms/ml, respectively. The
gallbladder/serum ratios of drug concentration were 0.6-3.4. 2)
Levels of cadrofloxacin in bile reached a peak of 2.5-12.9
micrograms/ml after individually different period of time.
Cumulative bile recoverlies of cadrofloxacin (unchanged compound +
glucuronide conjugate) within the first 6 hours were 0.02-0.49%, and
0.08-0.75% within 0-12 hours. The mean value of [glucuronide
conjugate/unchanged compound] in bile was 37%, although the values
depended on the patients.

PMID: 15116576 [PubMed - in process]

19081 From: Kathy <catalina@m...>
Date: Thu Jun 10, 2004 2:14pm
Subject: CIPRO reaction


I'm the almost ex-wife of a CIPRO victim. He took it for two days a
year ago April (Easter Weekend) and had an elevated heart rate and
he says anxiety that only lasted 2 weeks. However, he had started an
affair in the month before this, and I think the CIPRO made his
behavior totally bizarre during the 6 sessions of counseling he
agreed to (in July through September). He also says he really wanted to
move out in May, and friends have described his conversations as
irrational.
He sat during the counseling sessions with his eyes closed and
responded to things said like a 2 year old. I don't know how much
may have been CIPRO reaction vs. guilt and whatever he was going through
on his own. But, my teenage daughter described him as "demon-possessed"
obsessing on certain activities, and not rationally discussing
things with either of us. He moved out in September and filed for
divorce
in October, and it is almost final. He had had a history of migraine
headaches, and his mom had severe migraines, depression and
alcoholism.
I have tried to talk about the possibilities that his reaction to
CIPRO may haved affected our counseling, but he says since I didn't
believe him at the time, he thinks I'm crazy now, and I should stop
sending
him information about the neuro-psychiatric ADR's of the quinolones
(which I have stopped). So I have realized I need to give this up, but
just
wanted some confirmation that the behaviors may have been influenced
by the CIPRO (not the start of the affair, but his reactions
afterward).
What do you think?

-Kathy


19093 From: Laura <lparker30@c...>
Date: Fri Jun 11, 2004 9:05am
Subject: Re: new troubling symptom...facial pain??

very weird for you to say that right at this moment becuase I too am getting
the same thing as well but this is mostly on my left side, though most of my
symptoms have been on that side. also have very stiff back and neck lately
with pain and leg pain and tooth pain as well its a weird one alright..
In a message dated 6/11/2004 4:29:29 AM Eastern Standard Time,
jeanhanna212@y... writes:

I woke up one morning and only one side of my face is very painful.
My right side including around eyes, lips, nose , and scalp is super
sensitive to touch and I get periodic electrical shocks. This is
very bothersome.... I believe this is called trigeminal neuralgia.
Has anyone else ever experienced this???
19100 From: Laura <lparker30@c...>
Date: Fri Jun 11, 2004 8:17pm
Subject: Re: new troubling symptom...facial pain??

maybew thats my problem to becasue before taking cipro oh maybe 6 months
before Ihad experienced what I thought was MS symptoms but they went away
and I didnt think muh of it at the time.
maybe the symptoms were trigggered by CIpro... I was never diagnosed with
Lyme though.

19107 From: chiggins1066 <chiggins1066@y...>
Date: Sat Jun 12, 2004 0:44am
Subject: Re: please go to fqvictims.org and print-sign-mail

When I told my ENT what had happened to me he said "I've never heard
of that before. Really strange, especially the rash."

So one of the top ENTs in the country has never heard of allergic
vasculitis, floroquinolone-induced tendinopathy and neuritis. Yeah
right. He then went on to tell me "I checked with the drug rep, and
they said neuritis and neuropathy don't occur with this drug."

really now?

So I called Bayer, and they checked their records. Then they told
me "yes, peripheral neuropathy can occur, although it is rare."

The insert that came with the Avelox makes no mention of nerve
damage, neuropathy, neuritis, or vasculitis. It also does not
specify the DEGREE or DURATION to which side effects can occur. It
is one thing to say "if you feel tendon pain, stop taking the drug
and notify your doctor" and "this drug may cause chronic tendon
pain, tendon rupture, and long-term muscular-skelital complications."

And this doesn't even touch upon some of the even worse side-effects
(organ damage, SJS) that might happen.

The drug companies are merketing this stuff like Tylenol, and more
people are getting hurt every day.

This drug is to be used against bacterial infections found within
anaerobic environments in which bacteria has penetrated, or is
threatening to penetrate bone. A severe sinus infection in which a
blockage has occured is a good example.

This drug should NOT be prescribed for things like lung infections,
UTIs, etc. That is what Zithromax and Augmentin are for.

Sorry if this sounds like a rant, but my feet are killing me, and
I'm really angry. I've spent thousands of dollars on doctors,
tests, accupuncture, massage therapy, supplements, you name it.

We have to stick together and act as a group. I sent my petition in
a few days ago. Whatever I can do, let me know.

Colin




19109 From: raghlg <raghlg@a...>
Date: Sat Jun 12, 2004 1:52am
Subject: Consumer Guide to Cancer Drugs - Levaquin Approved as Cancer Treatment

nice to know this, huh???

Levaquin
Publish Date: 10/13/99
Generic Name:
levofloxacin
Category:
Antibiotic
Classification:
Levofloxacin is an antibiotic that belongs to a group of drugs
called fluoroquinolones.
Action:
Levofloxacin prevents the bacteria from replicating DNA, so the
cells die. Levofloxacin is used to treat sensitive gram negative,
and some gram positive bacteria. It is used to treat sinusitis,
bronchitis, pneumonia, skin infections, and complicated urinary
tract infections.
How drug is given:
Levofloxacin is given intravenously or orally. Take levofloxacin
tablet(s) with 8 oz of water, and try to drink at least 2-3 quarts
of fluid throughout the day while taking levofloxacin. Keep pills in
a tightly closed container and out of the reach of children.
Remember:
You should read and understand the following information. If any of
it causes you special concern, check with your doctor.
Before taking this drug, notify your doctor of any of the following:
• If you are pregnant, breast feeding or planning children in the
future, inform your doctor of this before treatment. This drug may
cause birth defects if either the male or female is taking it at the
time of conception or during pregnancy. Men and women who are taking
this drug need to use some kind of birth control. However, do not
use oral contraceptives ("the pill") without checking with your
doctor.
• If you are thinking about wanting to have children in the future,
be sure to discuss this with your doctor. Many chemotherapy drugs
can cause sterility.
• If you have any of the following medical problems:chickenpox or
exposure to chickenpox, gout, heart disease, congestive heart
failure, shingles, kidney stones, liver disease.
• If you are taking any other prescription or over-the-counter
drugs, including vitamins and herbals.
Should I avoid any other medications, foods, alcohol, and/or
activities?
Your prescription and nonprescription medications may interact with
other drugs, causing a harmful effect. Certain foods or alcohol can
also interact with drug products. Never begin taking a new
medication, prescription or nonprescription, without asking your
doctor or nurse if it will interact with alcohol, foods or other
medications. Some drug products can cause drowsiness and may affect
activities such as driving. Your prescription and nonprescription
medications may interact with other drugs, causing a harmful effect.
Certain foods or alcohol can also interact with drug products. Never
begin taking a new medication, prescription or nonprescription,
without asking your doctor or nurse if it will interact with
alcohol, foods or other medications. Some drug products can cause
drowsiness and may affect activities such as driving.
Precautions:
If you are also taking antacids which contain magnesium or aluminum,
iron, or sucralfate, take them 4 hours before or after your
levofloxacin dose. If you take a vitamin containing zinc, take it at
least 2 hours apart from your levofloxacin dose.
Tell your doctor if you have any allergies, especially to antibiotic
drugs.
All antibiotics can cause allergic reactions. Stop the drug and tell
your doctor or nurse right away if you develop a rash, hives, red
blotches on your skin, difficulty breathing, or chest pain.
Tell your doctor or nurse if you are taking oral diabetic medicines
or insulin for diabetes mellitus. Levofloxacin may cause your blood
sugar to be low.
Use of antibiotics can change the normal flora in your body. Women
are at risk of getting fungal infections. Tell your nurse or doctor
if you get vaginal itching or discharge.
Tell your doctor if you are also taking warfarin (Coumadin),
cimetidine, cyclosporine, phenytoin (Dilantin) or theophylline.
There may be serious drug interactions. Talk to your doctor about
this.
Levofloxacin can increase your sensitivity to direct sunlight. Try
to avoid direct sunlight, and keep your head, arms and legs covered
when outside.
More Common Side Effects:
• Vaginal itching
• Vaginal candidiasis (fungal infection)
Less Common Side Effects:
• Vomiting
• Abdominal pain
• Diarrhea
• Loss of appetite
Rare Side Effects:
• Diarrhea related to infection of the intestinal membrane
(psuedomembranous colitis)
• Dizziness
• Feeling tired
• Feeling lightheaded
• Rash
• Hives
• Flushing
• Increased sensitivity to sunlight
FDA Approval:
This drug is approved for cancer treatment.

Copyright © 2004 CancerSource - All Rights Reserved
webmaster@c...


19112 From: chiggins1066 <chiggins1066@y...>
Date: Sat Jun 12, 2004 2:06pm
Subject: Does anyone have this symptom


My hands are almost sunburn red. with pinpoint red dots all over the palms. At first I thought this might be hives, but I think it is actually something called petechiae, which is essentially bleeding under the skin. This can be caused by an allergy to a drug. It doesn't cover my entire hand, just the palms, and especially where I make contact with a table or object.

When I went on Prednisone as a treatment to my Avelox ADR, this went away entirely, only to come back when I stopped. The condition was worse when I first experienced my ADR -I actually had larger red welts on my palms, like allergic vasculitis.

It's like my immune system is completely out of whack, attacking my skin (like Serum Sickness).
I've been tested extensively for Lupus or any other autoimmune disorder, and all tests came back solidly negative.

If I try to lift something heavy, or do light weights, the hands turn even more red -like constricted blood flow or something.


19113 From: taundaleah2001 <taundaleah@m...>
Date: Sat Jun 12, 2004 2:44pm
Subject: New to Group & Detxofication


Hello everyone, my name is Taunda and I am also suffering from
levaquin ADR. I've seen 10 docs, had all the lupus, MS tests and am
a little better than two months ago when this all started. I
initially suffered from incredible stress, sense of doom, muscle
pain and burnig in all limbs, involuntary finger movements and
incredible pain.

I've been researching detoxification, has anyone tried the niacin,
vitamin programs that seem to be listed on all the detox sites?


http://fe.pennnet.com/Articles/Article_Display.cfm?
Section=OnlineArticles&SubSection=HLTHS&PUBLICATION_ID=25&ARTICLE_ID=
173597&VERSION_NUM=3

http://www.detoxacademy.org/detox_basics.htm

http://www.drug-rehabilitation.info/narconon-drug-detox.htm

They all seem to suggest Niacin, B & C vitamins and sauna's. Any
feedback would be appreciated. I took my first dose this morning
and will post with my results in a few weeks.

Taunda



19118 From: Laura <lparker30@c...>
Date: Sat Jun 12, 2004 9:45pm
Subject: Re: Does anyone have this symptom

yes definitely hasd ths even from the beginning I was obsessed about it
showed it to doctors they shrugged it off and also said that alot of my
veins are visible in my legs and else where now they said that was nothing
either.lol man I hope I stop imagining these things soon eh
19123 From: chiggins1066 <chiggins1066@y...>
Date: Sat Jun 12, 2004 11:08pm
Subject: Re: Does anyone have this symptom
Laura,
it really is amazing. My GP shrugged this off as well, saying "my hands get red too, especially when it is cold."
My hands are naturally pale (I have very fair skin). NOT sunburn red! It is an allergic response to the quinolones.


19124 From: Taunda Nestor <taundaleah@m...>
Date: Sat Jun 12, 2004 11:11pm
Subject: Re: Does anyone have this symptom

I have been evaluated by 10 doctors in total now since my april floxing.
My dermatologitst told me that I had all the symptoms of dermomyosits, but
that my skin was not showing the normal rash.

I later had a discussion with my mechanic who informed me that he had drug
induced dermomyosits as a result of a cholesterol medication.

I wonder if levaquin can also induce dermoyositis? Dermomyositis is also
called polymyositis if you don't have the rash. Has anyone heard of this?

I've attached a picture of dermomyositis if you'd like to see if the rash
looks like yours. I'm pretty sure that it is also in the autoimune
category.

Good Luck!
Taunda


19126 From: Laura <lparker30@c...>
Date: Sun Jun 13, 2004 0:41am
Subject: new/old symptom...

this happened back in the beginiing of the first course of cipro it
prompted me to g oto the hosptial and have the ER doc tell me its an
inner ear imbalance ...
anyways its almost like numbness but I can still feel my skin.. on
the left side of the face and jaw feels junky tight as well. inside
my ear its like closed up not swollen almost like something blocking
it like a bone...
that and extreme dizzyness and derealization..



19130 From: <Beadit42@a...>
Date: Sun Jun 13, 2004 1:17am
Subject: Re: Re: in regauards to not eating FQed meat...

haven't posted anything on here for a longggggggg time-after 7 years have
sort of given up!! I haven't had my favorite food either for almost 3 years now-
and I find when I do have a buffalo wing (YUM) now and then in the past few
months I started cheating-I certainly feel the difference!!!!

:( sherry


19131 From: Taunda Nestor <taundaleah@m...>
Date: Sun Jun 13, 2004 0:47pm
Subject: RE: new/old symptom...

Laura,

I was given levauin for a sinus infection that was contributing to my ear
disorder that I've had for about four years. I have labyrinthitis which is
also known as miniers disease. My ear gets a full, blocked feeling, the
ringing starts and then I get dizzy. Not a fun feeling.

I'd say that if you have the full feeling you probably have fluid trapped in
your inner ear. Fluid can only drain from the inner ear through your
estacian (spelling?) tubes. When they become blocked the fluid can't drain
and starts putting pressure on the nerve and the nerves in your ears start
sending mixed up messages to your brain on movement, that's why you get
dizzy.

I have found that I can force my tubes open by opening my jaw and holding it
in a certain position, if you can do this you'll hear a pop and feel the
draining start. I have also found that putting heat right over and under
the effected ear can reduce the swelling and help drainage. I put regular
white rice in a sock, tie the end and put it in the microwave for 2 minutes.
It will stay hot for about an hour and works perfectly on the ear, also
works well on sinuses. I also use saline nasal spray - the kind with no
drugs added, if I use this on a pretty regular basis it seems to keep the
tubes open.

I hope this information helps. You can always make an appointment with an
ENT. Your ENT has a device that can measure the pressure behind your ear
drum and let you know if that's the problem. You can't tell just by looking
in the ear, so your GP probably can't help unless he has this device.

Good luck!!

Taunda

19132 From: Taunda Nestor <taundaleah@m...>
Date: Sun Jun 13, 2004 1:08pm
Subject: RE: Re: Does anyone have this symptom
Laura,

My symptoms were pretty severe. I started on levaquin for a sinus
infection that was aggravating my ear problems.

I started the levaquin (500 mg.) on 4/22/04, by 4/26 I was a mess. I could
barely get out of bed, I started with my calf muscles locking up, burning
pain, moved into my back and later into my arms. I had pretty severe
tremors., severe fatigue. It was so bad that I could be sitting perfectly
still and my thumb was moving all by itself. Very scary stuff.

I also had CNS symptoms of crying every day, horrible nightmares, babies
being cut up and such. I couldn't sleep and was very depressed.

It's been about six weeks and thank god the CNS symptoms seem to have
subsided. The tremors are almost gone and I'm feeling much better except
for the limb pain. My muscles are just very sore, not so much the burning
as before but more of a constant aching.

I also have a rash, looks like my blood vessles are closing to the skin than
before and I had little red hard bumps all over. They seem to come and go.
My dermatologist said it was pimples.. hmmm... never had pimples before?

Taunda

19133 From: Taunda Nestor <taundaleah@m...>
Date: Sun Jun 13, 2004 1:14pm
Subject: RE: Re: Does anyone have this symptom

I have treated with 10 doctors, with differing opinions, they all seem to
think that the levaquin is somewhat related but no real diagnosis. I did
have one ER doctor tell me that I had serum sickness.

I did a little bit of reading after the last posting and I believe that the
rash I have does look like serum sickness.

19137 From: Taunda Nestor <taundaleah@m...>
Date: Sun Jun 13, 2004 4:02pm
Subject: RE: Re: Does anyone have this symptom

Carol,

Did the muscle symptoms improve with medrol dose pack?

I'm currently in Physical therapy and it said in the article that I read
that you should no do massage with serum sickness.. my pt massasages me
every time... and my muscles are SCREAMING!! Just took flexeril to help
tooday.

If the medrol helped the muscle pain for you I will surely ask the Dr. for
one.

Thanks :)

Taunda

19143 From: Debra Morse <debm@c...>
Date: Sun Jun 13, 2004 8:30pm
Subject: Response from FDA

Thought you all might find the following information interesting to read!

I recently wrote to my Senator and Representatives and in a response Senator
Pryor, he stated that he had forwarded my letter to the FDA along with a request
that they send me a copy of whatever response they made to him. Well, I finally
got a response from the FDA and basically I think it's a copout. Below, you
will find what they wrote (along with an inserted comment or two from me!).


"This is in response to your email of February 22, 2004 to Senator Mark Pryor
regarding the inclusion of a "black box warning" in the labeling of quinolone
drugs. The Food and Drug Administration (FDA) has forwarded your email to the
Center for Drug Evaluation and Research's Office of Executive Programs to respond.


It is important to realize that all drugs carry risks as well as benefits, (LIKE
WE DIDN'T ALREADY KNOW THAT!) and it is often impossible to determine which
individuals will suffer an adverse drug reaction. Benefit versus risk is always
evaluated during the FDA drug review process, and benefits must outweigh risks
for a drug to receive FDA marketing approval. ( DUH!!This is a point I made
in my original email when I stated that I realized these drugs had a place in
the medical field but that because they are extremely powerful drugs, they should
be warning doctors to use them as drugs of last resort only instead of prescribing
them like candy!) The FDA realizes that when an approved new drug becomes widely
used in clinical practice, health care professionals may observe differences
from clinical trial results in both the incidence and/or types of adverse drug
experiences. (YEAH RIGHT, the rare one here and there willing to admit the
patient just might be right!) After approval of a new drug, the sponsor is required
to provide periodic reports to the FDA as well as reports of any adverse reactions.
(HMMMM, have to wonder about this one. Is it being done or not?!) The Agency
monitors these reports to determine if any safety problems or trends can be
identified and takes actions accordingly. Additionally, FDA has revised labeling
in response to post-marketing reports from adverse events.

We will continue to monitor future adverse events reported to us. We recommend
that your support group encourage those individuals contacting you regarding
adverse events experienced when taking quinolone to submit a MedWatch report
at http://www.fda.gov/medwatch. FDA will continue to weigh all risks and benefits
associated with the quinolone class of drugs prior to taking any additional
action
Sincerely
Francis T. Gipson, MHA, FACHE
Office of Executive Programs"


Debra


19144 From: Taunda Nestor <taundaleah@m...>
Date: Sun Jun 13, 2004 10:16pm
Subject: Anyone Interested in taking Action?


I did more research, my husband is starting to say .. step away from the
computer.

However, I do not believe it's fair that we are out here in all corners of
the earth trying to find answers when Johnson & Johnson and Orth Mcneil
probably have the answers we need.

Ortho Mcniel is owned by Johnson & Johnson. They are located in Brunswick,
NJ. About 1/2 way between Philly and New York City.

Now I know you may think I'm crazy... but I would be more than willing to
buy a plane ticket to NJ/NY/Philly if I could convince enough of you to join
me there to protest Johnson & Johnson's headquarters.

They have the resources to find out exactly what is going on with us, and
probably already know. I think that they are a darling company in the
American eyes and would not want the bad press that a protest would bring.

So if anyone is interested, let me know and I'll leave my sunny home in
naples for a few days in NJ.
I would think we would need at least 15-20 members of the group to attend.

And I guess I will say that it would be a most interesting protest... I know
I can't walk for very long so we'll have to bring lawn chairs :)

Taunda
My favorite story in this regard is when I wrote to Sen. John
Warner, (R- VA) a couple of years back when I had my Levaquin
reaction. It was a thoughtful, carefully crafted letter I sent and
it took me some time to compose.

His reply:

"Blah, Blah, Blah....

Blah Blah

We will continue to look into sacarrhin..."

Yep-- it was a form letter and they forgot to change the word in the
last paragraph.

-Linda


19146 From: quinedout <quinedout@a...>
Date: Mon Jun 14, 2004 2:05am
Subject: Re: Response from FDA


also to shed some light, the people who work at the fda have their
salary paid by the drug companies... the drug companies also pay
their own doctors to say the wonderful advances in medicine in
regards to the quinolones drugs... they pay the researchers,
chemists, scientists etc... plus, not to add along the grant money
they supply the major universities!!! it is disgusting.......


19159 From: Taunda Nestor <taundaleah@m...>
Date: Mon Jun 14, 2004 5:53pm
Subject: Re: Anyone Interested in taking Action?


Our new arts center is great, I hope I get to see your sister.
Unfortunately I'm to sick to enjoy living here. :(

I am treating at the Cleveland Clinic, and they new it was levaquin as soon
as I walked in the door. They had another patient who had an ADR the same
time I did, so at least I am getting good care, unfortunately the numbness
is getting worse and nobody is doing anything about it!!!!!!!!

19166 From: Debra Morse <debm@c...>
Date: Mon Jun 14, 2004 10:24pm
Subject: Re: FDA Response to Recent Inquiry

Hi Vonnie,
Yep, this sounds EXACTLY like the canned, idiotic response I got from the very
same "Frances" person! My God, they are so arrogant they don't even bother to
make sure their facts are straight when they respond to us! Witness the fact that
this message didn't even have the correct dates in it!
Debra

On Mon, 14 Jun 2004 09:39:16 -0600, Vonnie Burr wrote
> All:
>
> Due to privacy concerns, a friend of the groups asked me to post this.
> Our friends editorial comments in response to the HHS are included in
> brackets.
>
> Vonnie
>
>
> We would like to thank you for your post marketing surveillance reports
> of January and February, 2004. However, CDER's Office of Pharmaceutical
> Science reviewed your initial submission for January and the numbers are
> not consistent with the reported numbers within our office. {Of course
> it doesn't matter that the numbers being referred to came directly from
> the AERs reports obtained under the freedom of information act} It was
> also noted that the majority of those adverse events reported are
> well-known side effects of the Fluoroquinolone class of drugs. {Well
> known by who? The physician sure as hell don't know about them} Since
> approving the first Class of Fluoroquinolones in 1996 {Wrong, first
> approval came in 1982 NOT 1996} for treatment of acute maxillary
> sinusitis, acute bacterial exacerbations, of chronic bronchitis,
> community-acquired pneumonia, uncomplicated skin and skin structure





19168 From: <sweet1956pea@a...>
Date: Mon Jun 14, 2004 8:19pm
Subject: hernia, anyone?

Hello All ~ I have not been following what is going on in the group, but I
have a new development. It appears as though I may have an inguinal hernia. I
have been bothered for over a year now, and it has gotten to the point that I
can barely walk because of it. The "doctors" where I was seen before
pooh-poohed and said it was fibro, be patient, it will go away.

My new PCM is going to evaluate. If I remember anatomy correctly, isn't a
hernia a separation of tendon/and or ligament (which is damaged by quins)?
Hmmmmm.

Would be interested in any feedback from others who might have a similar
problem.

Hope you are all doing as well as can be expected, or even better.

Have a wonderful day!

Patti
19169 From: noquins <noquins@y...>
Date: Tue Jun 15, 2004 0:21am
Subject: Re: People already in the process of taking action


dear taunada,
you are very new to this board as well others, ..however, if you
look through the archives, you will see how many people have tried
to get this issue out in the public. the fqvictims.org site is
fairly new (just a few months) and there has been "datline" tv
documentary, oprah, good morning america, people magazine
etc...stepehn fried wrote "bitter pills" regarding the
quinolones ... also, there have been a few people who have already
been to washington and are currently persiung congressional
action.... so don't knock what you do not know.... again, go to the
home page and read the archives from 1999... what is needed is
everyone to speak up... not just a few... the state reps, congress
and sentate need to know... this means writing, calling, making an
appointment within your congressional district and writing letters,
petitions etc because the drug companies deny what is happening to
thousands of people...you might want to write the fda and count all
the reports that have been sent in and still the fda and drug
companies turn a blind eye.....things will change, but everyone has
to shout and complain and get heard..not just a few
individuals......thank you

19170 From: noquins <noquins@y...>
Date: Tue Jun 15, 2004 0:23am
Subject: new quinolone web site

new site on quinolones

www.antibiotics.org


19171 From: raghlg <raghlg@a...>
Date: Tue Jun 15, 2004 0:43am
Subject: Re: People already in the process of taking action

the fqvictim.org petition has only been on the internet for 2
weeks... i have heard there have many replies.... the site has been
up almost 6 weeks... i think the site is doing a great job...this
site, along with david's fqresearch.org and the fqvictims.org and
the new antibiotic.org sites have really come around recently to get
attention... i am sure that this will all break before the
election.... there are way too many peole who are physically unable
to withstand a trip let alone the expense... the petition is vital
in order to have the signatures... but do read the archives... it is
well worth it along with the articles published......

19172 From: Taunda Nestor <taundaleah@m...>
Date: Tue Jun 15, 2004 0:53am
Subject: RE: Re: People already in the process of taking action

How fortunate for me that the site came up right when I took levaquin. I
have an appointment in the morning at the cleveland clinic.. now both knees
swelling and legs showing more signs of nerve damange with all the numbness.
I have printed off multiple articles from fqvictims to share with the doc
who's bio says he's a former professor and medical director at the cleveland
clinic. Hope he can help.

I aplogize for acting/speaking before I fully understood. I will contact
fqvicitims and see if there is any way I can help in a more productive
manner.

I'll also let you know what the doc says :)

Thanks to everyone for all of your help. I have read the story of suicide
after being floxed and cried every day for some time until I found this
support group and understood that I was not going crazy. You have been so
helpful, I haven't cried in a couple weeks but am sure that I would be a
basket case with out all of your support.


Taunda


19178 From: chinacat6142000 <chinacat6142000@y...>
Date: Tue Jun 15, 2004 2:22am
Subject: For the ladies in the group re: breast pain

Sorry about the previous post. Computer is going whacky. Has
anyone in the group ever experienced breast pain and tenderness ?
I am now premenstrual and this is not a common "PMS" symptom for me.
The pain is in both breast. It is similiar to the pain and
tenderness I had when I was pregnant. I am not pregnant. I can
hardly put my clothes on. The seat belt even hurts.I also had elbow
and knee pain come back again but that has subsided. Any feedback
would be appreciated. This is sooo uncomfortable. Thanks.

Tracey



19181 From: paul keels <paul_keels@y...>
Date: Tue Jun 15, 2004 3:53am
Subject: Nerve Conductivity Tests?

I'm scheduled for "nerve conductivity tests" this
week. I understand it's an electrical procedure that
can identify areas of nonconductivity, etc. Has anyone
ever experienced such a test, and can you describe it
or clue me in as to its potential for identifying
assorted areas of neuropathy or other nerve damage,
please?

Thanks.
Paul
19182 From: <kings1978@y...>
Date: Tue Jun 15, 2004 5:01am
Subject: Re: Nerve Conductivity Tests?


I have had it done. I;'s no big deal. They stick nnedles in your legs
at various points and run some current through. Yes, you feel some
pinching in your legs but so what? The current is few very breif
bursts that have that "hurts-so-good" "hit your funny bone" feeling
like when the Dr hits your knee wit da rubba hamma

It's a good test for certain conditions. I know it's pretty much the
confirmation test for Lou Gherig's disease and worthless for MS. (I
specifically asked directly about these two conditions)

They didn;t find anything wrong in my case but like any tests there
is a threshold to meet. The extent of my nerve damage is perhaps
below what this test can discern.

In fact, from listening to the people on this group, my impression is
that MY neuropathy symnptoms are pretty mild compared to most here.


19184 From: jeanhanna212 <jeanhanna212@y...>
Date: Tue Jun 15, 2004 5:42am
Subject: throat problems?

I have had a constant sore throat for most of the time. It also
really hurts when I swallow. Has anyone else experienced this?? It
is really bothersome and nothing seems to help...


19185 From: Laura <lparker30@c...>
Date: Tue Jun 15, 2004 6:12am
Subject: Re: throat problems?

I have also that problem and also jaw problems and twitching tongue womtimes
, soo weird these symptoms are I wish I could wake up one day and tehy would
be gone. well at least the mental stuff, eye problems brething problems and
heart palps all the rest I could deal with... well the allergies too need to
go but anything else is ok lol.
19190 From: Rachelle Golub <golubshelli@y...>
Date: Tue Jun 15, 2004 1:01pm
Subject: Re: Anyone Interested in taking Action?


Taunda and Mary: We live in Ft Lauderdale - there is a Cleveland
Clinic there too. They also have not been much help, nor do they
show a lot of concern - he cancelled his IV Lidocaine therapy because
it appears to be making him worse (he was CRIMSON head to toe when he
left after two treatments) - the dr was to have called him back -
that was 3 wks ago and we are still waiting! I hate to tell you, but
my boyfriend will hit the one year mark this month. The burning, the
tingling, the muscle spasms, the sensitivity to touch has all
continued and or gotten worse. And, to make matter worse, his
primary care dr fq'd him AGAIN (that's BEFORE we knew about this list
and the results of fq's) for about the 20th time in the last few
years. I've FINALLY been able to put a post on the neurological
forum (they accept only 2 questions a day) - lets see if they have
any ideas. Already been to dermatologist, allergist, neurologist
(had Lidocaine IV therapy) and ended up addicted (now detoxed) to an
opiate to alleviate the pain. Neurontin (1800 mg / day) provides
little to no relief. Air conditioner set on 60 provides some relief
to him (I wear flannels in mid summer!) He lost his job and is
fighting for disability. Will try the Lypoic Acid and Magnesium
suggested by list members. Hope you find a faster answer. Seems
the more fq's you took, the longer and stronger the reaction. And
unfortunately he took MUCH and MANY (and, as I've already posted)
his "old" primary care physician STILL refuses to believe this was
the cause (says none of his other patients ever complained). Let's
see what the new primary care dr says - appt is this Thursday!
Believe me, living with an fq'd victim is almost as bad as being the
fq victim themselves!

Shelli (significant other of Gregg)



19197 From: Taunda Nestor <taundaleah@m...>
Date: Tue Jun 15, 2004 5:45pm
Subject: RE: Re: Anyone Interested in taking Action?


Rachelle,

I am so sorry to hear of Greg's horrible year. I did go to the nueuro
today at the Cleveland Clinic who's exact words regarding levaquin "toxic".
He did an autonomic EMG that I don't have the results from yet and
unfortunately susupects vasculitis also.

I aslo had a chance to complain again to my pharmacist who is of the opinion
that it is widely known that quinolones can do this to your body. I wish I
had known prior to taking this course.

I will certainly keep your family in my prayers and hope things start to
turn around for you.

Taunda


19198 From: shelli <golubshelli@y...>
Date: Tue Jun 15, 2004 6:35pm
Subject: RE: Re: Anyone Interested in taking Action?


Thank you, Taunda - prayers are most welcome. We also did an emg - but as you will see from many members of this group, most of these tests show "normal" results - much to our dismay and discouragement. We are now going to see an endocrinologist in hopes that maybe he can help. And as indicated, I will keep the group informed on the response from the neurological forum. I have already had one "comment" re: someone going thru a similar problem, but no doctor response yet. Seems that takes several days.

Shelli




19203 From: <WAlakhdar@a...>
Date: Tue Jun 15, 2004 6:46pm
Subject: Re: throat problems?

When I was first floxed, my voice was gone. Not sore, just raspy like I had
been screaming for a long time. I am finally noting, 3 months later, that
I have a voice again.

Mary



19212 From: shelli <golubshelli@y...>
Date: Wed Jun 16, 2004 0:56pm
Subject: Re: Re: OK,, Now I'm really scared!!

Gregg's BODY looks like this at times, particularly on the chest, neck and ears. You should have seen him after his second (and LAST) Lidocaine IV treatment - he would have glowed in the dark!!! Sometimes his palms look like this also if he is over-heated. (And he has very fair skin so he looks like he has a bad sunburn!)

Shelli


19221 From: shelli <golubshelli@y...>
Date: Thu Jun 17, 2004 8:26pm
Subject: Re: So frustrated!!!!!!!!!!!!!!


Well, after visiting the endocrinologist yesterday I'm not sure what the doctors think anymore. NONE of them, this one included, feel the fq's are any problem at all. To quote this doctor: "Every medication has some side affects; if you believe what you read on the internet you need to see a psychiatrist to deal with your problems!" This doctor feels Gregg should be off ALL medications. He says Neurontin is no good and will not help (but he doesn't say what will.) The doctor thinks it is all in Gregg's head (but couldn't explain why Gregg was so red or why he is burning so badly!!!) And the response from the doctor at the Cleveland Clinic Neurological Forum question was to see a pain management specialist to get something to deal with the pain. His new primary care physician wants to dose him up with anti-depressants (probably so that Gregg won't bother him anymore cause Gregg won't care about the pain anymore! He reacts VERY badly to any antidepressant - sleeps all day even
after weeks on them and doesn't even bother to get out of bed most days! ) So there it is - just like many of you we have vastly differing approaches, and no answers.

Sorry to vent folks, but I am so very frustrated and upset today. Based on the Cleveland Clinic answer we are trying to get in to the Univ of Miami to a neurologist that specializes in neuropathies and chronic nerve pain. I guess I need to hold out some hope they will have an answer.

Shelli

chiggins1066 <chiggins1066@y...> wrote:
This type of treatment is commonly used for chronic fatigue syndrome.
Is this what Gregg was diagnosed with?

The skin issues sound like a severe allergic reaction bordering on
Stevens Johnson Syndrome. Very dangerous. It could also be allergic
vasculitis -but I've never seen it all over someone's body.

Do Gregg's doctors believe the quinolones are to blame?




19222 From: shelli <golubshelli@y...>
Date: Thu Jun 17, 2004 8:28pm
Subject: RE: Re: Iodine a trigger?

The Cleveland Clinic in Ft Lauderdale says that there is really nothing called "serum sickness" and that if you are sick due to a medication that it will clear up in a few weeks. (Yeah, sure!)

19223 From: bobgroz2001 <bobbygr@r...>
Date: Thu Jun 17, 2004 9:45pm
Subject: Some encouraging news

I want to encourage you all with good news - we are making a
difference.

Both my GP and urologist at Temple University Hospital know about my
story and have reviewed fqvictims.org

My GP told me yesterday, because of this, he is severly limiting his
prescribing of quinolones. He said only life/death situations would
warrent his prescribing of these drugs.

Also, my urologist at Temple is well known for his prostatitis
research. He is one of three urologists in North America who study
this horrible affliction.

He runs NIH studies and previously did double blind studies combining
NSAIDS and Cipro.

He has stopped combining NSAIDS and quinolones for the studies. We
are talking about many, many studies here.

Thanks to all of you - your stories - many people will be spared a
horrible fate.

We ARE getting somewhere - please be encouraged....

Bob



19226 From: build_it95 <build_it95@y...>
Date: Thu Jun 17, 2004 10:30pm
Subject: Inability to perspire

Has anyone else been troubled by an inability to sweat? I am unable
to be in direct sunlight for any length of time without feeling ill.
Also my body can't regulate temperature because I can't sweat.


19232 From: Rex Wockner <rex@c...>
Date: Fri Jun 18, 2004 1:41am
Subject: Re: Some encouraging news

I succeeded with my primary-care doctor, my dermatologist and even my
dentist. Once they saw that some of what I was reporting was in the PDR
then didn't hesitate to believe the rest. Dentist says he won't prescribe
FQs at all anymore, primary-care doc said she was very glad to have this
info, dermatologist read what I gave him from the Net and said it was
fascinating. Docs are at Kaiser in San Diego, dentist is in private
practice here. Primary care doc noted my electronic records at Kaiser that
I am never to be prescribed an FQ again, and had me get a Med Alert for
around my neck.




19243 From: shelli <golubshelli@y...>
Date: Fri Jun 18, 2004 2:59pm
Subject: Re: So frustrated!!!!!!!!!!!!!!


No, that is one speciality we have not seen. After this week Gregg and I are so very discouraged, I'm not sure I can get him to go to another doctor. The endocrinologist was #7 - primary care, allergist, dermatologist, neurologist (referred by him to anesthesiologist / "pain mgmt" dr (yeah, sure!), psychiatrist and endocrinolgist. We are now waiting to see a neurologist that specializes in neuopathy at the Univ of Miami. (I hope we don't have to wait too long!)

shelli


19244 From: <sweet1956pea@a...>
Date: Fri Jun 18, 2004 11:11am
Subject: Re: Inability to perspire

I have totally the opposite problem. I sweat even in a 68 degree F room.
Just pours out of me. I can't wear a hat inside (I have a very short buzz cut
as my hair is coming out from chemo), and going outside makes me miserable.
It is not hormonal either, as my doctor keeps trying to tell me.

Have a great day. Try to stay cool!

Patti

19247 From: taundaleah2001 <taundaleah@m...>
Date: Fri Jun 18, 2004 4:54pm
Subject: Immunologist Appointment - Suspects Levaquin Started Immune Process

I went to the immunologist today. I showed him the blood work
already done and we discussed the immune complexes – serum sickness
that Colin and I have been researching.

Once again, he believes that the Levaquin is definitely the cause of
my problems and has also indicated that the Levaquin may have
started auto immune process that will not just go away with
drinking lots of water.

He ordered the additional blood work:

Thyroglobulin ab
Thryroid preoxidose ab
Atrhritis panel
Complement ch50, total
C-1- Eserase inhibitor

Complement Components:
C2
C3

Anti-Histone Antibody
SPIEP w/reflux
UPBS w/reflux
CRP

He indicated that he has treated another patient with levaquin ADR
and he should be able to tell me after this blood work has come back
weather a new immune process was started because of the levaquin.
I'll let you all know what he says.


19248 From: taundaleah2001 <taundaleah@m...>
Date: Fri Jun 18, 2004 9:14pm
Subject: My ENT Visit - the poor doc that prescribed it

I saw my ent today, the poor fellow who prescribed me this med. He
did indicate that he would no longer prescribe it and was going to
talk to the drug rep, wondered why he hadn't heard about it before.
I told him about fqvictims.org and fqresearch.org and told him to
tell the drug rep to call all the dr's I've seen. I actually felt
sorry for the poor guy he felt so bad.



19250 From: chiggins1066 <chiggins1066@y...>
Date: Fri Jun 18, 2004 9:59pm
Subject: Re: My ENT Visit - the poor doc that prescribed it


It's amazing that he actually listened to you! My ENT initially dismissed my claims altogether, then reluctantly agreed that it might be some kind of drug reaction, but then went on to say it was so rare it was like winning the lottery twice. He has no intention of curtailing the prescriptions of Avelox.

I saw the Podiatrist about my feet today. He was a little more receptive, but was lost when I brought up the subject of serum sickness, immuno-complexes, and small vessel vasculitis. Interestingly enough, he did say "sounds like Bayer owes you some compensation."

Unfortunately, many doctors have egos, and it is difficult for them to accept the fact that they don't know what some of these drugs actually do, only that "they work, so prescribe!"

My neurologist was cooperative and listened to me. He has little doubt that Avelox caused my problems.

We just need to keep fighting, and getting the word out.




19253 From: Tracey McCracken <chinacat6142000@y...>
Date: Sat Jun 19, 2004 2:17am
Subject: Re: Late or missed menses (For the ladies)


I would like to know if any of the ladies in the group have missed a period or were very late while in the midst of being floxed. I am a week late, but have the cramps , tender breasts and ... nothing. Very bad tremors today, nerves, literally fried. I am like clockwork every 28 to 30 days, so this is unusual. The adr's started end of May , beginning of June after being floxed twice since March. My concentration is soooo bad, this is very frustrating. I never had a problem sleeping, now this past week , I was up ALL night for two or three nights. People at work think I am a hypochondriac. I've had to leave early again, felt like I was going to faint. Blood pressure ok. I even took a pregnancy test, .. negative. Thanks for listening, any feedback would be helpful. This is all new and not fun. Good luck to everyone. Tracey

19258 From: <WAlakhdar@a...>
Date: Sat Jun 19, 2004 5:01pm
Subject: Re: Re: Late or missed menses (For the ladies)

Hi Tracey: I have had all the symptoms you mentioned....ALL OF THEM, since
I fell with lyme disease several years ago. I have even had to take
medication to make myself have a period. The sleep problem has been and is torture,
my nerves are fried, I have consuming panic and anxiety.

Yet all of this was getting better as my lyme treatment continued. Then I
was floxed!

Now, I have been in the hospital with the anxiety to bad I hyperventilated
and needed an ambulance. Sleep is some delicious thing that evades me,
without the hordes of sleep medication I take (trazadone works well on high dose).

Yes, floxing does this if it hits the nervous system hard. Also include for
me the call to commit suicide, massive depression and fits of crying.

I had begun to have a period of my own, just prior to being floxed, and now
that is gone again.

I would like to know if anyone with the nervous system syptoms this bad
every got better, as well.

Take care Tracey,
Mary

19282 From: Laura <lparker30@c...>
Date: Mon Jun 21, 2004 8:45pm
Subject: HAHA! just went to the doctors

for my first actual visit with a real doctor that I will see consistently!!
lol want to know what the initital diagnosis is?
lol MAJOR DEPRESSION.
lol....

yeah im depressed because my life isnt the same any more after taking these stupid drugs...

gave me a drug to take Paxil CR
oh and saw levaquin being advertised and all the med books were full to the brim of ads for stuff like that.

she oredered a pap smear(yeah I know... lovely experience..)
a TSH thyroid stimulating hormoneBasic metabolic panel
Cholesterol Panel. took another ECG and was fine still...

offered a tetanus again but refused it...

why? paranoia of anything going in my body.=/

yeah its these lovely drugs I never was like that EVER.
always been paranoid about certain things but never this bad its rediculous what goes through my head.

on a side note a peculiar effect that floxing has had on my brain I seem to be more creative than before and more artisticly inclined...lol

Ive always been an artist but some how it comes easier now after doing soo. helps me slip into anoter world too which helps.

moms says oh yeah take that because you know that it will help you relax...


no thanks I dont need to lose more reality than already have lost..


ok just wnated to pdate on whats going on with me how are you all doing?



Geez, doctors are idiots. Mine told me stress caused me to curl up
in a ball screaming from massive panic attacks out of the blue after
being hammered by Levaquin.. Thanks for the wonderful information. He
also handed me a subscription of Paxil and said I need to see a
shrink. He also said there was no way Levaquin caused the problems
and that he hands it out like water and has never seen such a
reaction before.. Jackass!!

ANyway I threw away the prescription and it took months for my fried
nervous system to start working again.. Anxiety was the worst... I
never had any anxiety / panic attacks pre Levaquin...I did recover
from most of my ADR's from Levaquin.. Took a long long time.

Kevin


Yep, my doctor just told me I had an anxiety disorder that is
causing me to tic and wanted to know what was going on in my life
that was causig me to have a set back. he practically insisted that
it was obvious that I was depressed and wasnt enjoying my life ect.I
take an antidepresent already so I made it easy for him. Only one
step further to say its obviously isnt working. Thing is Im NOT
DEPRESSED!! I take my meds and lo and behold they work! I told him
thats funny , none of this started untill I took avelox! (the tics
and muscle spasms and legs giving out from under me and the times I
cant say a sentance for the life of me that makes any sense) He wants
me to see a psychatrist. Stupid doctor indeed.


19287 From: psycho_wolf_pup <mythfang@h...>
Date: Tue Jun 22, 2004 10:23pm
Subject: My story and some questions...

I am 21 years old, in good health except for being kinda overweight.
Prior to this whole event, I was an upbeat, happy, mostly healthy
person who took no drugs for there was no reason to (rarely got
headaches or the flu, maybe once a year if at all).

At Noon on Wednesday, June 9th, my abdomen began hurting, a sort of
cramping pain. It was very light, so I passed it off as abdominal gas
or stomach cramps from bad food. It was too light to worry about, but
it was persistant, and got worse as the day drove on. It was quite
annoying by nightfall, and felt better when I layed down, so I went to
sleep hoping it'd be gone by morning. Needless to say it really really
wasn't.

I went to the ER at about 8 AM on Thursday, June 10th, thinking I had
appendicitis. They did a catscan on me, and my appendix was just fine,
but my intestine looked as though it may have Diverticulosis. I had
about 5 different doctors come in and tell me this, each one going
"But you are 21...you shouldn't have Diverticulosis" They admitted me
for observation, and gave me antibiotic IV drip, and within minutes
the pain was gone.

They then scheduled a colonoscopy for the Friday, June 11th, and I got
woken up at 2 AM to drink a gallon of Go-Lytely to clear out my
intestines for the colonoscopy. At around 4 PM I went in to the
colonoscopy, and was given drugs to stop any pain and make me
'forget'. They did neither, and I felt the whole procedure.

Before the colonoscopy, though, the gasentologist came in and said
that he wasn't sure what the hell the other doctors were thinking in
saying I had diverticulosis, cause it looked like a basic infection of
a small section of my intestine. After the colonoscopy, he said what
he saw of my intestines was just fine, and I got prescribed a 10 day
course of Levaquin and Flagyl, and was sent home Saturday evening.

Saturday through Wednesday, the only effects I suffered were light
nasea, constipation, and lack of appetite. I called up the doctor and
they said I could stop after Sunday instead of Tuesday.

Thursday the real problems started. The feelings of 'doom' were ebbing
through my mind, though I brushed those away easily. The weather
didn't cooperate, setting up 80-90 degree temperatures, and making me
even more miserable. I suffered through it till Saturday, when I
started losing sleep. Monday I woke up lightly shaking for 30 seconds,
but it passed quickly. I stopped taking Flagyl that day, as I
attributed most of the side effects to that, but took one final dose
of Levaquin at around noon.

At around 5 pm I came across two message boards, this one for
Quinolone's in general, and one specifically for Levaquin. What I've
read so far is quite disturbing, but I have a positive outlook and am
sure I'll defeat this with help from friends and family.

Though for now, I have a few questions.

1) Does the loss of appetite dissappear eventually?

2) What does 'floxed' mean. I've seen the word many times, but could
not gleam its definition when it was used.

3) I've read a few times Antacid's can help. True? What else can help
me through this?

4) Insomnia/Sleeplessness. Whats a good way to beat it without
resorting to medication?

Thank you all for your time, and good luck.

-Caig



19305 From: psycho_wolf_pup <mythfang@h...>
Date: Thu Jun 24, 2004 2:01pm
Subject: Feeling better


Well, its the day after my second hospital visit. I actually got sleep
last night, even if it was in 2-3 hour spurts with a bit of shivering
and stretching in between.

I like sleeping with the TV on. The sad thing is, whenever I woke up,
whatever was on was on some sort of 'doom' scenario with people going
"its hopeless, I'm going to die". I didn't have dreams or nightmares,
or at least don't remember them.

My urges to constantly urinate have dissappeared. I'm going to see if
they stay gone over the next few days before I consider canceling my
urologist appointment (it probably isn't wise, but problems with money
cause more stress than I need!)

I still have very little appetite, but my brain doesn't go "Ew, food"
anymore, making it easier to eat something.

Anyways, I found out my lips get quite dry. I have what looks to be a
blister or something at the corner of my lips, when I open my mouth
past a certain distance, it sorta 'opens' and stings. Is there
anything simple and non-prescription I could use to help this go away?

Thanks
-Caig



19307 From: psycho_wolf_pup <mythfang@h...>
Date: Thu Jun 24, 2004 3:54pm
Subject: Re: Feeling better


Flox was Sunday before last to last monday. I've had dry throat most
of the time, sore throat once or twice, jittering/trembling mostly
when I wake up, a slight muscle pain around my right buttock/waist
yesterday thats gone. I've had very very mild bouts of blurriness in
my vision, but that might be just my reaction to it plus having strong
prescription eyeglasses. My right foot has been feeling sort of sore
close to where the 3 middle toes bend.

Urination is ALMOST back to normal now. I feel a very very 'slight'
urge now, nowhere near as bad as yesterday and day before. I'm
drinking less water than I did when it first appeared, and a lot mroe
spread out along the morning. Urination feeling is about 80% normal.

Basically, I'm going to wait till Monday to see how well I'm doing and
if it's gone. If it isn't, I'm going to see the urologist. If I'm
feeling damn fine, I'll cancel, but make a new appointment if the
symptom returns.

In other questions...anyone know of good medical insurance I can get
without work? I need something to soften the blows of these medical
bills hehe.

19308 From: Laura <lparker30@c...>
Date: Thu Jun 24, 2004 7:50pm
Subject: thyroid...

doctor just caled and talked to my mother she told my mother that something was off with my thyroid...

But, the weird part she said its not treatable right now have to check back in 3 months...lol umm thatnks doc.
mom asked if that could have been caused by Cipro she told her absoulety NOT, ugh then why the heck did it all start after taking the bloody pills...
eh I still dont trust their pills and never will... I wwish I was in more contact with my native american heritage I'd rather go to a medicine man than the conventional doctors..=<
everything else seems to be fine she says...
ok fine and im still sick. seems that fine has a definition to doctors than those of the patients.

19309 From: Justin <jjmg@a...>
Date: Fri Jun 25, 2004 0:17am
Subject: Re: Feeling better


It was "prostatitis" that got me into the whole flox mess in the
first place (exactly a year ago). I put prostatitis in quotes
because they did culture my urine and never found any evidence of an
organism. (Only a very small percentage of "prostatitis" cases
actually culture positive for something; but the standard treatment
is antibiotics -- and very long courses of antibiotics -- even if
there is no positive culture.)

I personally found that the fluoroquinolones made the symptoms
WORSE. (I started out on conventional antibiotics and was only
switched to fluoroquinolones when the symptoms returned.)

It was only while I was on cipro and levaquin that my prostate pain
was so unbearable as to make me consider suicide. I was on cipro for
two weeks and then levaquin for 6 days. It was while on the levaquin
that the CNS and other symptoms began, and when I discovered this
forum I stopped taking the levaquin (I doubt I would have survived if
I had taken the whole 21-day course of levaquin that I was prescribed
after my 14-day course of cipro).

The prostate pain became far less within 24 hours of stopping the
levaquin. (Of course then, all the big FQ ADRs started, and have
persisted, through multiple cycles, to this day.)

I have had relapses of prostate pain since that first bout -- but
NONE of them have been as bad as when I was on the cipro or
levaquin. I control my prostatitis symptoms through diet: avoiding
alcohol (which I have to avoid anyway due to the way the FQs fried my
brain), spicy food (which I do miss!), caffeine (ditto for the CNS
issues), and citrus (which I also miss). Whenever I get a
prostatitis attack, it's usually because I "cheated" on the citrus or
caffeine front. Again, though, the attacks, though unpleasant,
aren't *unbearable* like they were when I was on the cipro and
levaquin. I honestly believe that while I was on those drugs, they
were actually WORSENING my pain perhaps as one of the side-effects of
the way they are known to block the GABA receptors in the brain. In
fact I think that MANY of our FQ symptoms are due to a kind of
permanent (or at least long-term) "hypersensitization" of the brain --
i.e. we feel things more than we used to.

- Justin


19312 From: lindahpcss <lindahpcss@y...>
Date: Fri Jun 25, 2004 4:31am
Subject: Need info fast please


Hi

Was just directed to this site through a Chronic Lymphocytic leukemia
list. My husband has been treated on and off with cipro for several
years. Following his most recent knee replacement surgery (actually
stage one of a two stage revision) he was put on cipro again at 750
mg twice daily. This was not really of concern at the time as he has
taken it before and had no problems. This time after taking the drug
for approximately one month he started to notice tingling and
numbness in his right hand. HE complained to the doctor in the rehab
about this but was brushed off with an explanation of carpal tunnel.
It seemed to be getting a bit worse but the sensation would return
after about 20 minutes so he was bothered but not really disturbed by
this. Anyway, he came home from hospital this past saturday and he
did not get his prescription for cipro filled until the monday.
Interestingly the hand didn't seem to be bothering him as much on the
saturday and sunday. On wednesday morning this all changed and he
woke up unable to use his hand. He had lots of swelling in the
forearm and also in the recently operated upon leg. HIs i.v. nurse
(oh yeah he is also getting 8 grams of Cloxicillan daily through a
pic line) came and directed me to take him to hospital. So off we
went. Doc in emerg was baffled but diagnosed a radial nerve
neuropathy of unknown origin, and is making arrangements to have him
seen by a neurologist. She also wants him to be seen by his
oncologist (he also has CLL) as she is aware that there may be some
neuropathies associated with CLL. I posted this to the CLL list and
someone there recommended that I check out this list and some other
sites as well. To say the least I am astounded. Any and all info I
can get would be greatly appreciated. Should he stop the cipro (this
will cause huge problems with his knee surgeon who believes himself
to be god and beyond questioning)? Are magnesium and calciium really
helpful? Are there any specialists (particularly in Canada) who know
about this stuff? Is there a "window of opportunity" for full
recovery?

He is frightened and so am I. He already has had more than his share
of medical problems (60+ knee operations including what will soon be
his 5th knee replacement, CLL and severe chronic pain) and he is only
46 years old. HE certainly didn't need this added to the list and how
do you diagnose this as the cause of the problem? is it a process of
elimination thing and if so what tests should be done to get to the
final decision?

Any help would be greatly appreciated. Thank you in advance.

Linda Hayward
Port PErry Ontario Canada


19313 From: psycho_wolf_pup <mythfang@h...>
Date: Fri Jun 25, 2004 1:57pm
Subject: A Bad Night


Ok, night before last was just great.

But last night was awful.

My frequent urge to urinate returned. I couldn't sleep, and when I did
sleep, I had some really freaky dreams.

Right now I dont' need to go as much as I did last night, but I still
feel a light urge.

I dunno if I can stand this if it'll go night after night until tuesday.

Any suggestions?



19317 From: librarian1234567890 <owoodward@h...>
Date: Fri Jun 25, 2004 2:58pm
Subject: Called my senators and rep

Dear folks - I called Sen. Edward Kennedy, Sen. John Kerry, and Rep.
Michael Capuano today to follow up on the letters I wrote. Obviously
only spoke to aides, but boy did I give them an earful. Mostly I
said that we (the victims) were the only ones who could inform
people about the FQ poison they are handing out. Urged them that
something had to be done about this. Reminded them that Senator Max
Baucus had an aide which was crippled by taking Cipro during the
anthrax scare - urged the congressmen to talk to Baucus, who saw
first-hand and close-up what these drugs can do to a human.

Capuano's office couldn't find my letter, so I re-sent it. They said
email is best when you send letters. Here is info again on how to
find your reps and senators - still not too late to send letters!

Representatives:
http://www.house.gov/writerep/
Senators
http://www.senate.gov/general/contact_information/senators_cfm.cfm

Sen. Kennedy's aide said she would track down my letter and call me
back.
Sen. Kerry's office said I could leave a voice message for the aide
responsible for medical issues. He's pretty busy running for prez,
so don't know when, if ever, he'll ever get to this issue.
The gist of my phone calls was that I wanted to make sure that this
concern got beyond the aide and to the congressman in question.

OK, this politicking is sure time consuming!!! Don't let them forget
about this. Don't let them bury our letters. Let's give them hell!!

Olive


19324 From: Mitrerom <mitrerom@c...>
Date: Sat Jun 26, 2004 9:01pm
Subject: Re: Re: A Bad Night


Hi caig and everyone else,

Caig, I just wanted to say I've been reading your posts with a lot of interest. I didn't want to jump in too quick to say anything but from what you say, Ive been feeling exactly the same thing - right down to the pain that seems to be in the third toe, frequent urination at nights and jsut some very odd feelings inbetween my legs. The odd thing is, these symptoms of mine all came on BEFORE I was floxed. I'd been to our local genitary-urinary clinic (I`m based in the UK) for various tests but no sexually transmitted disease was found (they were convinced it was gonorrhea after - turn around now people if you're squeamish - I was um..expressing discharge from my urethra. Yeah, it was pretty gross). After that and another course of non-quinolone antibiotics, I seemed to develop the classic golf-ball feeling between my legs which indicated Prostatitis. A Doc gently placed a see thru tube up my butt to "view" my prostate but said there was absolutely no sign of swelling. Thats when he decided to give me a months worth of Ciprofloxacin (its a standard thing and apparently do work well for prostatitis - there's not many antibiotics can penetrate the prostate). So, I took them and here I am on this website. getting better everyday tho. usually. BUT, I wanted to say after a digital examination, which I was assured would be massivley painful if I had prostatitis - it felt odd but was by no mean painful, I`m convinced I havent got prostatitis. Like yourself I`m awaiting to see a urologist and also a physician. The urologist to see if there is any reason why my urethra should sting when I pee (not all the time tho) and the physician to see why I feel "swollen" between my legs and also why my glands either side of my lower tummy sometimes are swollen ad sometimes not even tho blood and urine tests show no sign of infection at all. Also, I don't know about you, but I often feel that the tendons in the top of my legs (that would attach to my pelvis) feel really sore and tense and painful (not sure wether this was the flox or not) but also that on my left side of my perinuem - well, sometime it feels like there's a piece of glass inside.

Anyway, jsut wanted to let you know you are most certainly not alone Caig. I`m also part of a yahoo prostatitis group and after floowing it for a while, I`m pretty damn sure that though some symptoms are shared, I haven't got prostatitis.

It's taken me a while to try and differentiate between the flox symptoms and other symptoms but like you I also never really feel hungry...and my ability to pee does go up and down. But last week I had almost two whole weeks with no symptoms at all. But I've done something recently to bring it all back on...yup...very disappointing. The floxing tho, thats another matter and this group has been great for information. The magnesium tip (taking it to bowel tolerance) really helped me. So much so in fact that I now don't feel the need to take it. It helped most with the anxiety.

AS with all the other tips...hell, give them a go. If they work, let us know eh?

Al lthe very best

Mark



19330 From: jeanhanna212 <jeanhanna212@y...>
Date: Mon Jun 28, 2004 1:55pm
Subject: help-sharp pain in back of head?

Lately, I have had this constant head pain in the back of my head.
At first, it was just a pressure sensation in the base of my skull,
typically described in these posts. Now, it is pressure feeling and
severe pain in the back that spreads to my forehead and around my
eyes. It is resistant to any kind of pain medication. I really feel
like this is a brain tumor- I am going crazy. It is a very strange
feeling... anybody else experience this?


19336 From: Honey Moon <snapdragon928@w...>
Date: Wed Jun 30, 2004 3:46am
Subject: speech problems

I have been having headaches every day now since relapsing or what
ever Im doing. and Im having problems talking also. I speak broken
english sometimes or with differet accents same type of speach,and
then I'll speak totally normal. Its in addition to the tics that are
physical and verbal, but different. Ill converse most of the day, off
and on like this,doing it for a half hour or longer at a time.And I
continue with the legs weakening and giving out but that is getting a
bit better. Frustrated and wodering if this is normal for tourrettes
that they say I have since the avelox, or more seroius side affect.
or maybe a new complication to the cns damage, ms or what ever. any
body got some ecouragemet?Already had catscans mri you name it and I
have Dr appointmet with new neurologist friday.Thanks