Re: Re: All about my history-Greg

[Guest guest]

Nettazig,

I am currently on Floxin to control my UTI/Reiters - it is working well now

& I was given it by infectious disease drs 2 times in the last 20 years. 1

problem I found with my 90 year old mother - the urologist ordered ciprofloxin

& I made sure the drug was not generec Wal Mart moved into the family farm &

was right next to her house. Mom was mad at the Urologist - a very good

instinctive reaction - I got her away from the urologist & got her Internist to

give her Septra DS & miracles do happen & I had a happy mom. I have watched

with friends & myself the responses to drugs from penicillin to Geocillin to

tetracycline to Minocycline, to Septra DS with doxycycline, to Ciprofloxin to

Levafloxin to erithromycin to Clarithromycin to Clindamycin.

The treatment of Reiters/Chronic Uti with antibiotics - if they work -

requires the proper drug, and typically the proper drug gives almost immediate

improvement. If you get the right drug then you must take it full strength for

a long time - then taper back to 1/2 strength probably forever.

Quinolones may cause some problems in people - my experience is that I

respond to almost everything & have been in the emergency room for drug

reactions

4 or 5 times. I have not had an issue with Ciprofloxin or floxin - but if

they are not administered with a heavy dose or are not the right drug for your

situation then you need to change drugs after 10 days.

I have had Reiters for 35 years - although the urologist that had me on 2

years of erithromycin said that my body aches and pains were not related - he

gave me 2 weeks of geocillin(super high test penicillin) & everything went

away including the visits to the urologist.

My Reiters was caused by UTI. At least you can go to the urologist &

complain & maybe even the Infectious disease dr. I Don't know what to do for

those

of you that have been trigured by leaky gut & other exposures such as GI

infections - but keep going to the dr that feels right - they may not be as

tuned in as a top Rhuematologist but keep trying as relief is attainable.

Greg

[Guest guest]

Sorry,

The first time I had a uti that triggered Reiters type symptoms - that were

laughed off by the urologist - was 35 years ago. He treated me with 2 years

of erithromycin & I suffered - he then took a culture & had it read by a

pathologist & prescribed the Geocillin - it worke & I did not have another uti

for 3 to 4 years - Septra DS cleared that one - the story goes on & on.

My Rhuematologist ( Hopkins trained) diagnosed me with Chlamydia

triggered Reiters in 1997 - & its been cures & flares ever since. The one thing

I

get from the Urologist & the Rhuematologist is when we find a drug that works -

I will be on it forever, at a lower dose. I was good for about 2 years on

Biaxin & he reduced me to from 400mg per day to 200 mg per day to 100mg per

day & then we trired 50 mg every other day & it flared up & the Biaxin at full

strength would not work. I've been searching for the last year & currently

am having success with Floxin 2 times per day - will drop down to 1 1/2 per

day then 1 per day in the next 6 months - if this is the right drug - it

initially appears to be. I currently buy my drugs from Mexico to try - I did

this

1 time before & got a real lecture from the Rhuemmy - but he prescribed it so

I could get it covered by insurance - the drug was Clindamycin & kind of

worked, but eventually stopped working.

Good Luck - this is all a nightmare!

Greg

[Guest guest]

Greg wrote:

The first time I had a uti that triggered Reiters type symptoms - that were

laughed off by the urologist - was 35 years ago

Hi Greg

Sounds like you and I go back the same amount of time. My first flare came in

1973, not long after I returned from maneuvre's in the Carribean Sea and the

Islands there with the Canadian Navy. It was finally diagnosed properly as

Ankylosing Spondylitis in 1983/4. Since then they have added Reiter's,

Psoriatic Arthritis and Rheumatoid Arthritis to the Spondy list and Parkinson's

and Type 2 Diabetes tossed in for good measure. Because of the nerve impingment

in the S.I. Joint area they are looking at a possible case of Cauda Equina

Syndrome. Only time will tell with that but it has already affected my bladder

and bowels slightly with new symptoms popping up every couple of weeks to months

or so. Really keeps my docs on their toes.

Glad to see you posting.

Fr. Dave

AS, RS, RA, PsA, Parkinson's and Diabetic

Older than dirt

[Guest guest]

Fr. Dave,

I wish you the best of luck, your health issues are unbelievable!

I do know that Reiters can trigger many of your problems & if you can get

the Reiters under control you may get some other relief - just throwing this

out there.

Best Wishes

Greg

[Guest guest]

Greg,

Thanks for the time on the phone yesterday and all the info. I am going to push

a little harder for a better urologist who may actually be interested in

helping!

Doug

[Guest guest]

You are welcome - I did not think to call you back on the cell (free

minutes).

Greg

[Guest guest]

Hi . How you're feeling better these days. I too am curious. Look

forward to Greg's response. Still waiting here for my synovial knee biopsy

results. Should know next week.

Regards,

[Guest guest]

Hey,

Sorry I did not respond quicker - my reading comprehension must be

compromised.

I am on Floxin 200mg 2x per day & I feel really good compared to how I felt

really bad 4 weeks ago.

I know that for the last 35 years that I have had Reiters to some degree -

that the proper antibiotic treatment made me feel 18 again. At 62 I would be

happy for 40 but that may not happen. There may be some long term side

effects from the Reiters including psychiatric issues that may not be

reversible.

Best of Luck,

Greg

[Guest guest]

,

How painful was the procedure to obtain the synovial fluid from your knee. I am

thinking about requesting it.

Doug

Hi . How you're feeling better these days. I too am curious. Look forward

to Greg's response. Still waiting here for my synovial knee biopsy results.

Should know next week.

Regards,

[Guest guest]

,

I had my first UTI / some Reiters symptoms / Urologist visit 35 years ago -

I am 62.

That episode was cured by Geocillin for 2 weeks - - I was healthy for 7 or 8

years. I went to Mayo Clinic & they gave me Septra DS - which made me feel

good but they would only give it to me for 2 weeks - whereas a long term

treatment may have worked.

Floxin is working for me now - it is a Quinolone - I will be taking it

forever if it continues to work / is the correct drug for the germ I have. I

have

been to Infectious disease Drs & they prescribed this for me about 20 years

ago & about 15 years ago 3 month treatment & it worked both times.

Some say the UTI is a symptom of Reiters - in my case I would bet everything

I own that the Reiters is caused by the UTI I have. Where do you get UTI's

- lots of ways but my 99% theory is from the 6 girlfriends - I dumped - in

the last 25 years - these women were unfaithful - I am not stupid - all you

have to do is listen & people will tell you what they do. Also avoid the quiet

ones if they are not talking - you are not getting information.

My first choice for a drug is Septra DS forever if it works. Biaxin forever

also works.

Good Luck,

Greg

[Guest guest]

<<Greg said: There may be some long term side

effects from the Reiters including psychiatric issues that may not be

reversible.>>

I've not heard that one yet. It would be nice to blame some of our " looney "

tunes on spondy, but don't think that is one of the symptoms listed.

However, now that I think about it...the long term pain and disability does

tend to drive some of us a little crazy. :-)

[Guest guest]

Doug:

Absolutely painless during the procedure.

A bit uncomfortable afterwards.

My suggestion is .. DO IT.

Regards,

dbcooper1951@... wrote:

,

How painful was the procedure to obtain the synovial fluid from your knee.

[Guest guest]

Greg:

Thanks.

Are you saying that you've had Reiters since you were 18 and only recently

discovered Floxin. Floxin makes you feel good (i.e. 40 years old?). Any side

effects?

I'm going to research Floxin.

Thanks!

[Guest guest]

My sentiments exactly!

Greg

[Guest guest]

I probably will. They can't find anything with blood, urine or semen so I guess

it is the next step to rule in or out possibilities.

Thanks again,

Doug

[Guest guest]

,

Check out www.fqvictims.org before trying any of the floxins. In my mind it is

a high risk with the possibility of high reward family of antibiotics. Many

people are able to take them without problems. Others are not so lucky and

suffer life changing side effects. After taking Cipro (the flagship " floxin " )

in January of this year, I developed many of the central nervous, peripheral

nervous and muskoskeletal problems listed on the above referenced site. The

medical community barely recognizes the muscle / tendon issues as the only

possible side effect. All I know is that on the 5th day of taking Cipro I began

an incredible nightmare which has lasted the entire year and is still disrupting

life today. So be careful my friend!

[Guest guest]

Greg,

Please, please, please research the Quinolones before commiting to them long

term. I told you my story but check www.fqvictims.org to read about others. I

may have RS, but I am certain Ciprofloxacin has really added significantly to my

problems.

Thanks again for the time the other day.

Doug

[Guest guest]

Ken,

The theories are many. The most talented Rhuematologist was Dr Brown from

Hopkins - I think the #1 Medical & Research center for Rhuematology /

Arthritis & for sure the best place to go with Reiters.

According to Dr Brown & my Rhuemmy ( educated at Hopkins & on going

annual education there) the antibodies that developed from the initial

infection

trigger are still floating around in your system & joints. It appears, in

their educated logic, that the antibiotics have some effect on these rogue

antibodies. Dr Brown's Protocol includes initial shock doses of injected

Clindamycin & 7 years of treatment with oral Clindamycin & I think 3 times a

week

of Minocin.

Now I have had numerous Pathological samples of prostate fluid & semen

samples - they all have shown germs & the pathologist bombards the germ with

antibiotics & finds the correct antibiotic. I have seen tests that show a

concentration under 10 ppm or some figure that the Urologist says it is not in

the

valid level of an official infection.

I have been to ID Drs, & all of the rest. The current treatment choice

appears to be to throw antibiotics at the patient. I don't think a true

bacterial diagnosis is available unless you are in a research hospital where

they use

exact diagnostic procedures & that is all they do.

I can only say that I have been cleared of UTI's & Reiters by antibiotics a

few times.

Best Regards

Greg

[Guest guest]

Greg, you say that you have a Urinary Tract Infection

(UTI). If so, when you are tested, what bacteria

specifically is being found?

As I'm sure you know, one of the 'classic' symptoms of

Reiter's Syndrome is urethral pain / urethritis, as a

result of the reactive phase of the disease. This has

been my most pronounced symptom over the past 6 years

of RS, but in seeing 9 doctors (urologists/ infectious

disease specialists / rheumatoligists), an

identifiable bacteria has not been detected, other

than the initial chlamydia infection 6 years ago. Not

knowing what else to do, many of these doctors still

prescribed antibiotics for me, some of which worked

for a time in relieving the urethral pain, but in my

research I discovered that many antibiotics are also

anti-inflammatory, and so I feel this was the

mechanism at work... not the anti-biotic killing some

unidentifiable 'bug' I had.

So I'm curious when you say UTI if you are talking

about a recurring and identifiable 'bug' that you are

dealing with... And if so, what it is...

Wishing you the best,

Ken

--- kruegermec@... wrote:

> ,

>

> I had my first UTI / some Reiters symptoms /

> Urologist visit 35 years ago -

> I am 62.

>< Muchibus snipibus ><

[Guest guest]

Ken,

I am in the same boat with urethral pain for almost a year. Cipro for a week,

nine weeks of Doxycycline, a month of Macrobid and no results, just pain. I

differ in that there was never a positive test for anything. Waiting results

from a specimen taken last week. Has your pain been continual for the 6 years?

I hope not! This is my greatest fear...long term u t pain. It really takes its

toll on your emotional well being over time. And it is my understanding that

long term courses of antibiotics are prescribed for RS patients for their anti

inflammatory capabilities as much as trying to kill some bug. My rheumy called

it sterile urethritis.

Appreciate any feedback. Still looking for hope.

Doug

Re: Re: All about my history-Greg

Greg, you say that you have a Urinary Tract Infection

(UTI). If so, when you are tested, what bacteria

specifically is being found?

snip----------snip----------------snip-------------

[Guest guest]

Hi Doug,

I'm sorry to hear you're dealing with urethral pain as

well. I've been a somewhat fortunate fella, in that it

has lessened (as have other RS symptoms) over these

years. But I still get flareups that last for a few

weeks, but not near as bad as at one time. I've rarely

been completely pain free, but still enough so that

many times I don't even notice the slight amount of

pain unless I get to thinking about it. It's amazing

what the mind can get used to, and block out.

Over this time I've also learned what things might be

triggers, and/or what to avoid when the flareups

occur... especially if I've gotten on a routine of

coffee, caffeine, soft drinks, and spicy things. So I

cut all of that out and it seems to help during the

flareups. I haven't really found any pain killer that

does much to help. As Greg has said, the antibiotics I

was given early-on seemed to stop the pain. But I have

also read about some of the things that antibiotics

have done to people, some of which is very similar to

my own RS symptoms. So, is my urethritis an RS thing,

or could it be antibiotic induced? Some guys I've read

about didn't have this chronic urethritis until after

they were given certain antibiotics.

When all of this started for me after a chlamydia

infection that I was asymptomatic to for a long time,

then I also developed prostatitis. And so it and the

urethritis often show up together in varying degrees.

The other thing that I dealt with for a couple of

years was balanitis -- penis skin sensitivity. Some

skin sensitivity is still there, but not nearly the

burning pain that it once was.

Some have suggested that the nerve pain drug, Lyrica,

could be tried for this. I've thought about asking my

Dr. for a sample to use during the next flareup. It

seems like nerves have perhaps been damaged in this

genitourinary area, and areas that were once

essentially pain-free or pleasurable are now stinging,

burning, and sometime on fire, internally and

externally.

I was a subscriber to this list a long time ago, then

stopped when my RS symptoms greatly eased up after

about 2-3 years. But a few months ago I had another

bad urethritis flare-up, and I joined up again to see

if there was anything new I might benefit from. I used

to know a whole lot more about this disease, but it's

been long enough that I've forgotten a fair bit of it.

Let me know if you have any more questions for me...

All the best,

Ken

[Guest guest]

Greg, thanks for filling me in on some of your

experience with urethral pain. Your path with this

thing has been a frustrating one, I know. I'll hope

that you find resolution, and that it will help the

rest of us as well! Keep us posted... I know you will!

Ken

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[Guest guest]

Ken,

Thanks for the help. Your experience sounds very similar. I have pain inside

and out and that was puzzling to me. I had read about balanitis but the Dr's

dont seem to be looking for it. I don't see obvious symptom but it hurts, badly

at times. I would like to get back to normal if possible, as soon as possible.

Doug