Great doctor

[Carolina]

Hey angels,

I saw a great doctor today (Duke) at the urgent care center where I went for a Urine test for my possible UTI.

He said two great things:

"We don't really know much about this"  not UTI's but stuff in general.

There's a huge universe of blackness out there and we have a few little paths where we have some idea of what's going on and the rest is a mystery.  AMEN!!!!!!

AND

"Stay away from doctors", which I heartily agreed with!

Hugs

Elaine

[Meld256]

Hi Elaine,

It's so great when we can find a doctor who we can relate to, and them to us!    I always appreciate one who admits we don't know everything.

So glad you're making some progress in your treatment.

Blessings,
Melinda

[Still in the hunt]

He may say stay away from doctors,, but soetimes we just need them to find that little path one might know about,, I;m still looking,,, most of mine are stuck in the car trying to find the handle to get out

[Meld256]

Still,

Lol 
You're right! I'm glad you haven't given up on them entirely.   

[Patze]

I keep trying to stay aware from them, Elaine, but darn it, they keep finding me and they're multiplying!!!!!

What did the doctor say about your possible UTI?


Patze

[Carolina]

Hi Patze:

Yeah, I TRY to stay away.

He said my urine didn't show up infected in his office  but he was sending it out for culture.

In the meantime he ordered an antibiotic and thought I should start it right away, just in case.

However, after consulting with my husband (25 years of research and teaching in immunology) he felt I should wait until the results came in, since my neuropathy may very well have been caused by an antibiotic I took for very persistent UTIs from 2007-2009.

The doctor was concerned that my first ever problem with my 'system' was an acute infection of my kidney with e-coli, which wound up in my blood.  I was bacteremic at the least and septic at the worst.  Close to massive shut down of my systems.   

That's why I freak out at UTI's.

But who knew the antibiotics might (remotely) be a cause of PN?

Live and learn.

Well, still living anyway.

Hugs

Elaine

still waiting to hear about the culture, btw.

[Still in the hunt]

sometimes Iwonder if all the antibiotics Ihad to take didnt cause my PN also, neuro called yesterday and she said after reviewing teh mris again,, she sees no evidence of cord compression,, hmmm,, guess she didnt look at the ones from Mayo that I gave her which showed some compression in the cervical area

[Carolina]

Exactly SITH!

Let me google the list.

http://medicationsense.com/articles/may_aug_05/warning_antibiotics_052205.html

"Peripheral Neuropathy: Rare cases of sensory or sensorimotor axonal polyneuropathy affecting small and/or large axons resulting in paresthesias, hypoesthesias, dysesthesias and weakness have been reported in patients receiving quinolones, including Avelox (moxifloxacin), Cipro (ciprofloxacin), Factive (gemifloxacin), Floxin (ofloxacin), Levaquin (levofloxacin), Noroxin (norfloxacin), and Tequin (gatifloxacin).  [The drug] should be discontinued if the patient experiences symptoms of neuropathy including pain, burning, tingling, numbness, and/or weakness or other alterations of sensation including light touch, pain, temperature, position sense, and vibratory sensation in order to prevent the development of an irreversible condition."

This is Macrobid (which I took for 2.5 YEARS)

http://www.drugs.com/pro/macrobid.html

Neuropathy:

Peripheral neuropathy, which may become severe or irreversible, has occurred. Fatalities have been reported. Conditions such as renal impairment (creatinine clearance under 60 mL per minute or clinically significant elevated serum creatinine), anemia, diabetes mellitus, electrolyte imbalance, vitamin B deficiency, and debilitating disease may enhance the occurrence of peripheral neuropathy. Patients receiving long-term therapy should be monitored periodically for changes in renal function.

Optic neuritis has been reported rarely in postmarketing experience with nitrofurantoin formulations.

Another List:

http://www.medlink.com/medlinkcontent.asp

Table 1. Antimicrobials Associated with Peripheral Neuropathy

• Chloramphenicol
• Chloroquine
• Clioquinol
• Dapsone
• Ethambutol
• Fluoroquinolones
• Griseofulvin
• Isoniazid
• Linezolid
• Mefloquine
• Metronidazole
• Nitrofurantoin
• Podophyllin resin
• Suramin

So I'm sure I have PN from taking antibiotics.

Which means it won't progress most likely, at this point.

However today I got the word that my heart is getting worse, with a sclerotic valve, an aorta full of plaque and and enlarged Left Ventricle.   All indications of incipient heart failure.   Tho the condition is highly associated with stroke in women.

So if the right one don't get me the left one will is highly applicable here.

Hugs to you SITH.

Elaine

[irish]

If anyone should have neuropathy from antibiotics it should be me. I have been on a boatload of them and I ain't through yet. I have been on 6 out of that list that was posted plus many of the other more common ones.

Another thing that I bet is very hard to prove for sure. I just talked with my doctor today about some things and he said that there is so much knowledge out there and also so many variables that it is almost impossible to find the reason for many things including where to place blame for reactions to medications and other chemicals. Lifeis wah too complicated now. irish

[Narablueeyes]

Exactly SITH!

Let me google the list.

http://medicationsense.com/articles/may_aug_05/warning_antibiotics_052205.html

"Peripheral Neuropathy: Rare cases of sensory or sensorimotor axonal polyneuropathy affecting small and/or large axons resulting in paresthesias, hypoesthesias, dysesthesias and weakness have been reported in patients receiving quinolones, including Avelox (moxifloxacin), Cipro (ciprofloxacin), Factive (gemifloxacin), Floxin (ofloxacin), Levaquin (levofloxacin), Noroxin (norfloxacin), and Tequin (gatifloxacin).  [The drug] should be discontinued if the patient experiences symptoms of neuropathy including pain, burning, tingling, numbness, and/or weakness or other alterations of sensation including light touch, pain, temperature, position sense, and vibratory sensation in order to prevent the development of an irreversible condition."

This is Macrobid (which I took for 2.5 YEARS)

http://www.drugs.com/pro/macrobid.html

Neuropathy:

Peripheral neuropathy, which may become severe or irreversible, has occurred. Fatalities have been reported. Conditions such as renal impairment (creatinine clearance under 60 mL per minute or clinically significant elevated serum creatinine), anemia, diabetes mellitus, electrolyte imbalance, vitamin B deficiency, and debilitating disease may enhance the occurrence of peripheral neuropathy. Patients receiving long-term therapy should be monitored periodically for changes in renal function.

Optic neuritis has been reported rarely in postmarketing experience with nitrofurantoin formulations.

Another List:

http://www.medlink.com/medlinkcontent.asp

Table 1. Antimicrobials Associated with Peripheral Neuropathy

• Chloramphenicol
• Chloroquine
• Clioquinol
• Dapsone
• Ethambutol
• Fluoroquinolones
• Griseofulvin
• Isoniazid
• Linezolid
• Mefloquine
• Metronidazole
• Nitrofurantoin
• Podophyllin resin
• Suramin

So I'm sure I have PN from taking antibiotics.

Which means it won't progress most likely, at this point.

However today I got the word that my heart is getting worse, with a sclerotic valve, an aorta full of plaque and and enlarged Left Ventricle.   All indications of incipient heart failure.   Tho the condition is highly associated with stroke in women.

So if the right one don't get me the left one will is highly applicable here.

Hugs to you SITH.

Elaine

DANG!!  As if you've got room on your plate for that mess.  I'm so sorry to hear that about your heart.  My maternal grandfather had PN.  My mother had Fibro and I'm almost certain she had Sjogren's as well but none of her doctors ever diagnosed her but she definitely exhibited classic symptoms.  Is it possible, I wonder, for these things to run in families?

[Carolina]

Dear Irish:

The PN as a rare but significant side effect of a list of antibiotics doesn't rule out their use for most people.

In fact, it really doesn't rule out their use at all.

And when I was prescribed Cipro the last two times I got the verbal notification to be on the look out for severe tendinitis leading to tendon rupture.  Which I've never gotten.

Most of us don't get these weird 'rare' side effects.

But It seems likely to me, with no other apparent cause, and an intense and prolonged usage, including three months of daily dosage with Macrobid Nitrofurantoin, in the two years leading up to the diagnosis of my PN, that the antibiotic is the cause of my otherwise idiopathic peripheral neuropathy.

But of course I don't KNOW, per se.  I think it would be very hard to prove except that it happens often enough to make it on the list of rare but significant side effects.

I think, having also had a horrible outcome to a routine bladder tack surgery, that I simply can't avoid the reality that 'stuff happens' and some of it happens to me. 

I'm not angry, nor to a blame anyone at all.   C'est la vie.

Hugs

Elaine

[Skylar]

Hi Carolina , you're lucky to have seen a smart and realistic doctor. As patients we forget that modern medicine is truly a miracle worker when it comes to acute care - the type we need when we have an accident or emergency medical condition. It is very poor at treating chronic diseases such as autoimmune diseases and that's why we, as patients, are so frustrated - science really doesn't understand why we develop AI diseases and there are no magic bullets. It's a mess - they don't even have reliable tests which is why getting a diagnosis is a nightmare.

OMG you were on Cipro (quinolones) - that's awful. That medication should be withdrawn from the market - it is illegal in other countries or limited access. I'm always shocked and saddened to see patients taking it knowing it's side effects. And for a bladder infection - and look what you are left with permanently! (((HUGS))) I know a couple of months ago when I was actively posting here, there was someone else who was taking Cipro and I told them to call their doctor and request another antibiotic. Most people don't realize that there are several classes of antibiotics - and most of them are not quinolones - this is a special class that is particularly dangerous with unique side effects not seen with other classes.