Re: Questions about ReA

[Guest guest]

wrote " I am new here. My other-wise health partner has a

`temporary diagnosis' of ReA. I have been doing research about this

syndrome and his symptoms seem to indicate ReA. "

Hi

I'm sorry to hear that you and your partner are having such a hard time. I

can't answer all your questions, but can attempt some. You'll probably have

more luck searching the web under 'Reiter's Syndrome' rather than ReA or

'reactive arthritis'. A lot of good, reliable information is also accessed

by searching under 'Spondyloarthropies', as ReA is one of the types of

inflammatory forms of arthritis that fall into this category. Look for

rheumatology websites in particular.

Re. the triggering infection, it has often 'been and gone' before a person

develops any symptoms, so will often not show up on blood tests. (Such was

the case with my first flare, but my 2nd was pinned down as being a result

of campylobacter poisoning).

Two suggestions: Be VERY assertive and pushy about getting aggressive, early

treatment for your partner: such treatment may reduce the chance of him

suffering further flares. Secondly, suggest that he be given a short course

(e.g. 10 days) of high-dose prednisone (40-50mg), as this will give him some

immediate relief. He may need strong pain-killers too, such as

Tramadol/Ultram, or codeine and perhaps something to aid his sleep, due to

his pain.

Best wishes and please tell us how you go!

[Guest guest]

asks:

<<1. Since he still has a fever, can this be an indication that the

underlying infection is still active? Can the NSAIDS cause this as well?>>

, I hope your friend will be diagnosed properly and have the right

treatment available as soon as possible, what ever the initial problem was. I

would think that the fever is consistent with an underlying infection, either

bacteria or virus, especially since he is suffering from swelling of hands and

feet and has systemic symptoms. Does he have a rash on his feet and hands that

are causing the swelling or are they just red and swollen because of joint

inflammation? Does he have the UTI symptoms? There are quite a few other

bacteria, parasites, etc. that can cause the same type of symptoms? Did the

doctor

see the lesion on penis? This would be important for a diagnosis. There are

different types of lesions. Did the doctor check for HIV? There are so many

new diseases that are cropping up with HIV and doctors are having a problem

with these new diseases. It is so important for safe sex protection, as you

know. Partners should also we checked for disease as Chlamydia is usually a

silent disease for people who have normal immune systems. There could be

re-infections. They say that as many as 40% of women have Chlamydia and don't

know

it. The % is higher among men. Untreated, it can cause infertiltiy, especially

among women. Our young people are getting this disease at alarming rates and

if they are sexually active, they should be check for Chlamydia and other

STD's at regular intervals.>>>

2. Should he ask for the one-time dose of Azthromycin just to

eliminate the possibility of Chlamydia? Is this enough for someone

who may have progressed to ReA from a Chlamydia infection?>>>

I believe the newest treatments for Chlamydia " with a Reiter's Dx " is for a

longer term for antibiotics use, if the disease is definitely Dx with

Chlamydia. I don't think they give the long term use of antibiotics

prophylactically, as it can have some nasty side effects. The antibiotic you

mentioned is

given to uncomplicated Chlamydia infection. Have all the tests that were

taken, come back with results? What tests were done?

I'm not a physician, we are all just members who have spondyloarthropathy.

My disease is Ankylsoing Spondylitis...so I've never experienced Reiter's

Syndrome, which has a different set of symptoms from AS. Most of us on the list

have various symptoms and disease levels and have only learned a few

highlights of the spondy's through members on this list and through information

on the

internet, but none of us are experts on diagnosing or treatments.

Below are some more web sites that might help:

Sincerely, Connie

_Reiter's Syndrome_ (http://healthlink.mcw.edu/article/926056398.html)

_Antibiotics for chlamydia on Health_

(http://health./ency/healthwise/hw147288)

[Guest guest]

Hi ,

I've been recovering from RA since contracting it via a salmonella

infection last September. My experience with my diagnosis & treatment

here in The Netherlands has been positive and I was correctly diagnosed

very early on. If travel to The Netherlands is realistic for your

partner, I can provide you with more information about my

rheumatologist.

[Guest guest]

Thanks for the suggestions, . I'll post updates here.

[Guest guest]

: If it is Chlamydia please call the University in Tampa Florida as they are

on the cutting edge using a combination of antibiotics to cure this thing. I

have gone from having every joint in my body on fire to just lower back pain. I

spoke with the Dr.Vasey there the other day and they remain optimistic that they

will cure this form of Arthritis. They are doing a study useing a combination of

antibiotics. They told me they are trying to eradicate a " spore form " of

Chlamydia that it turns into. Dr. is ahead of this study....

Hope this helps!!!

[Guest guest]

Kev:

I've always been suspicious of having a Chlamydia infection but NEVER tested

positive. I bet I've had more tests (swabs and urine) than any man on the planet

within a four year period. Never tested positive. What are your thoughts on

conventional testing? Did my " Best Infectious Disease Doctors " miss something?

Could the bug be transmitted orally?

Thanks,

[Guest guest]

Thanks, . Did you happen to take prednisone as had

recommended to me?

I am interested in what treatment you were given and the timeline.

Right now, we are more than 2 weeks from the initial medical visit and

he has been prescribed Voltaren and something for the pain. From what

I have read, this seems inadequate, but I am not sure of this given

that we are just two weeks out.

I am not sure just how he was given a RA diagnosis, but his

'generalist' doctor said that is his diagnosis. He will again see the

rheumatologist on the 1st and the 10th, and I want to call and

'politely' recommend more agressive treatment and cite medical

literature or anecdotal studies to back up these recommendations. But

I have been told that this is taboo in Spain and I find it somewhat

frustrating.

I guess what I really want to know is: Does 's treatment seem

adequate and reasonable? If it is not, maybe our next stop will be

the Netherlands.

I hope to have concrete information about this soon. My Spanish is

good but I don't yet understand all of the medical terminology, nor am

I prepared for the cultural issues regarding accepting everything the

doctor says without question.

Thanks.

[Guest guest]

Thanks, Connie. I work in Public Health, but not as a health care

practitioner. It has always amazed me that we have programs to do

Chlamydia screening and treatment in high schools, but they only

screen females because of the risks later in life from this infection.

I have always said that to prevent infection, they need to screen

and treat both males and females and also, the risks to men may be

'hidden.'

My partner has not had any diagnosis of infection - only a RA

diagnosis. I hope to have more informaiton soon.

Also, thanks for the link.

[Guest guest]

wrote: " I've been recovering from RA since contracting it via a

salmonella infection last September. "

Hi ,

You didn't say if you are HLA B-27 pos or neg. I'm curious as I came down

with Salmonella back in 1988 and I'm negative. But, most doctors around here

believe that it's only a male's disease and that men get it only thru STD's.

Such ignorance!

Good luck,

Dawn

[Guest guest]

wrote:

" am not sure just how he was given a RA diagnosis, but his

'generalist' doctor said that is his diagnosis. "

, are you getting your initials wrong? ReA is Reactive Arthritis

(Reiter's) and RA is Rheumatoid Arthritis which is a different kettle of fish

altogether.

You seem to be getting into see doctors fairly quickly so you could ask the

General Practitioner to refer you to a Rheumatologist or get more specialized

lab and x-ray tests done.

One piece of advice though, and that is not give the doctor the idea that you

know more than they do. That ticks them off to no end and could cause further

delays.

Hope you get it sorted out.

Blessings

Fr. Dave

[Guest guest]

Thanks Fr. Dave,

I am the 'King of Typos' - it is ReA, not RA, the sun king. I

understand that it is a fine line to walk when dealing with medical

professionals - I work with them and there is an entire 'nursing wing'

within my family.

As suggested, a little arm-twisting is sometimes necessary, but

I am usually very diplomatic. My issue is that my partner is not a

'complainer' nor does he like to go to the doctor, and yet he has

begged to be taken to the emergency room 3 times due to pain and

swelling, and was admitted into the hospital for a few days. His

general doctor does not seem to know much about ReA and is 'waiting'

for an another appointment with the rheumatologist, coming up on the

1st, which will be about a full month since his first medical visit

for this illness. His only perscription is for Volteran which has not

done much in the last week or so that he has been taking it. He is

still in a lot of pain, frequently has low-grade fevers, and due to

the swelling, he has such restricted movement that he cannot bathe

himself. Maybe I am being impatient, but how long should he endure

these symptoms before the doctor tries another medication?

One thing that the 'age of AIDS' has taught me is that doctors are

people, not gods. They deserve our respect and gratitude, but they

are not above scrutiny. Those doctors who have a issues with someone

being resourceful in trying to reasonably deal with their own

illnesses need to examine the underlying insecurities or

'god-complexes' that can cause them to have these issues.

Oh and Fr. Dave, I am not religious at all - and I am frequently at

odds with religions, but I sincerely THANK YOU for your blessings!

If there is a God and sin exists, then it is a sin for us not to use

our brains to be thoughtful and resourceful to help ourselves and

others and to find our path in the world.

[Guest guest]

Hi Dawn,

I'm HLA B-27 positive.

[Guest guest]

Hi ,

I was taking Prednisilone at a maximum dose of 30mg per day,

Methotrexate & Sulphasalazine. I was also on Tramadol for pain. I

began weaning myself of everything (with the doctor's guidance)

several months ago and have been medication-free for about six weeks.

[Guest guest]

Hi again

Just thought I'd add a comment that Voltaren (and the other anti-

inflammatories) are usually not sufficient for this type of pain.

(They certainly aren't for me and I'm on a high dose of one of the

strongest - indomethacin). The pain, swelling and inflammation that

ReA causes can be pretty impervious to drugs: I'm currently on

prednisone and even so my knee has just swollen up today

I think your partner (sorry, I can't remember his name) may well need

stronger pain relief - it sounds as though he is in need of it!

I hope you get more answers soon...

[Guest guest]

In a message dated 8/21/2006 10:51:51 P.M. Eastern Daylight Time,

garyoliver2002@... writes:

I have always said that to prevent infection, they need to screen

and treat both males and females and also, the risks to men may be

'hidden.'

You are absolutely correct, . I suppose they are concentrating on women

because of the infertility problem. There are more cases of infertility in

women than there are with people coming down with a spondy disease. I think

they

aren't taking the seriousness of the possibility of acquiring a Rheumatic

disease from Chlamydia infection yet. Maybe that will happen in the future? The

testing should be done on both sexes as it takes two to tango.

Don't forget to ask for the HLA B-27 antigen test. Although it isn't a

conclusive test...up to 80% have the genetic marker with people who come down

with

a spondy type condition. If he is positive, they may be able to cure his

initial infection, but there is no cure for possible future re-infections with

Chlamydia or other triggers that will predispose him to another round of ReA.

Antibiotics won't change his genetic makeup and his underlying auto-immune

system.

Sincerely, Connie

[Guest guest]

You wouldn't test positive with conventional testing because the bacteria is now

deep within your tissue causing disease because it takes nutrients and disturbs

your normal repair cycle. you may even need intravenous antibiotics. I don't

know I'm not your doctor. I never tested positive for Chlamydia either until

they did a punch (PCR) on my knee and found the little buggers. That's the

point, it's more a " parasitic infection " than one where pus hangs out your nose

or something. That is why it takes a long treatment with antibiotics rather than

the conventional treatment of a week on Doxy or a day on Zithro. It is deep in

your tissue now. that's why the statement " one day of Zithro will kill

Chlamydia " is not true!

These germs have been very tricky. Look at AIDS which is a virus and how

it becomes immune (Changes outerr and inner proteins so your body won't

recognize it). , I probably had Chlamydia for years and never even knew. It

can be very benign in men and later cause prostate disease or Arthritis . Our

support group seems to have two different factions; one that wants to separate

itself from any kind of sexual cause and another group; of young people who know

we are all human and realize truth is the only way we will get well. I know

there is different ways to get this disease such as food poisoning, but I would

bet the majority of us got it through unprotected sex. I think you can actually

pass the bug back and forth to your spouse. We did! The problem is a cure is so

hard because it takes the right doctor and the patience in the patient.

Remember, men or woman can have Chlamydia and not even know it! That's what

gives it the chance to get deep into our systems and

raise havoc. You'll get better , as soon as they get you on the right

medicine. It might take time though don't give up!!!! Dr. Shumacher is the

best, he is on the cutting edge!

[Guest guest]

In a message dated 8/22/2006 1:11:31 P.M. Eastern Daylight Time,

ccsdad116@... writes:

Our support group seems to have two different factions; one that wants to

separate itself from any kind of sexual cause and another group; of young

people who know we are all human and realize truth is the only way we will get

well.

,I think this is due to an absence of understanding. I don't believe we

have two factions in our group that want to separate the causes of our

diseases into sexual or gut causes. You are completely eliminating the reason

why

we have a spondy disease in the first place. It isn't the type of bacteria or

parasite or virus that is the basic problem. It is our hyper immune system

that doesn't work normally when it comes into contact with a variety of germs.

A goodly portion of Reiter's comes from Chlamydia. That just happens to be

from sexual activity. Other's in our group have had other bacterial triggers

and it just happens to be from other sources. We all are in the same boat, so

to speak. No matter what bug triggered the process.

Our Dr. Vassey may be able to use antibiotics to cure the infection that

initially triggers our immune system to go into high gear, but he isn't

changing

our genetic makeup in any way...so the possibility of another bug causing

our immune system to go hay wire is still out there. Your next bug might be

something else that will cause a Reiter's flareup.

BTW, I was " young and human " way before you! I certainly could have been

exposed to Chlamydia (and worse) if it had been around during my life time.

Don't make assumptions about us old timers. You have no idea. Regards, Connie

_eMedicine - HLA-B27 Syndromes : Article by A a Di Lorenzo, MB, BCh_

(http://www.emedicine.com/oph/topic721.htm)

_MedlinePlus Medical Encyclopedia: HLA-B27 antigen_

(http://www.nlm.nih.gov/medlineplus/ency/article/003551.htm)

[Guest guest]

Hi ,

You are obviously well-informed about ReA caused by chlamydia. Please

remember though, that is NOT the only trigger: As I have mentioned before,

I got mine from campylobacter poisoning. It would be impossible for me to

have had chlamydia, as I have only had one sexual partner (my husband - and

the same goes for him. I have been with him since he was 16 and me 17 yrs

old). We need to not focus too much on only one of the many triggers of ReA

- i.e. think more broadly.

_____

[Guest guest]

Kev:

I totally agree with you. I've tried my best to meet the best doctors in the

world. They've all let me down. I was tested for Chlamydia immediately after

a " high risk " event. All tests were and continue to be negative. The only

thing I'm thinking is my mouth / throat was not swabbed. Hmmm. I don't know

anymore. All I know is .. I am SICK and I'm getting worse.

This Friday, I'm going for a MRI of hip / lower back.

Next Tuesday, I'm having a bone scan (breastbone area).

How can I convince a doctor to conduct this PCR (poke) test? Is this like a

spinal tap? What kind of doctor would perform this test (i.e. ID / Rheumie /

IM)? Is the test painful? Big needle? Are you awake or knocked out? Please

let me know.

Geeze -- how do I convince my wife to go on antibiotics for life. She's been

having sinus infections every 3 months. She sounds nasal all the time... has

red eyes...stiff in the morning. Shit. I screwed up her life too. Dude this

driving me nuts.

Thanks.

[Guest guest]

I never tested positive for Chlamydia either until they did a punch

(PCR) on my knee and found the little buggers. That's the point, it's

more a " parasitic infection " than one where pus hangs out your nose

or something.

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

, You sure do have a way with words...But you're wrong about

two

camps of us..We're in this thing together,,,there is no 'tug-of-war'

going on here and certainly us older folk are in no way acting

behind some sort of prudish banner..Truth is, we've been saddled with

this

infection or disease for some 20 or 30 years in some cases..All that

means is that we've tried everyting imaginalable in order to reduce

the

severity of symptoms just short of Seppuku. Let's face it ,

Methotrexate and the anti-TNF's

like Enbrel are potentially dangerous; but we try them anyway in the

hopes something will bring the inflammation and pain down to

tolerablle levels..If you are really convinced antibiotics in some

combination and for some extended length of time will improve my

condition, I'd be more than

willing to try them out with my Rheumy's permission/..Fortunately he

and I have a pretty good relationship and if I could suggest

antibiotics in some kind of protocol, I feel certain he'd consent..I

would just ask if you could provide some literature involving double-

blind tests or the equivalent. I would be the first to try it out..

One last question, please, you mention Dr Schumacher and as I told

you

previously the last time i contacted him he was not convinced

antibiotics would reduce the symptoms very much..Now, that was 5 or 6

yrs ago and I would ask if to your knowledge has he shifted his

opinion

about long-term antibiotics and if so do you know what his feelings

are

nowadays about the use of antibiotics???Honestly this is not a tricky

question and above all i'm not trying to paint you into a corner..As

I

said, wee are all in this " thing of ours " together..There is

no 'us'

and 'them' when it comes to following any course which might lead to

an

improved quality of life..Lastly, I've had Reiters and Ankylosing

Spondylitis for almost 25 years snd tried a lot of things, except

long-

term-antibiotics so i would be very willing to give them a try if

only

you could point me in the right direction....meaning where can i find

some documentation let alone proof, which is very allusive when it

comes to nailing down a means by which we can share in the benefitss

of

some workable protocol together..Whatever DR Ralph Schumacher says is

worth listening to..I'm sure my Rheumy knows of him and would

acquiesce

in my desire to follow his advice if it means long term antibiotics...

jeff lanneau

>

[Guest guest]

Hi Im glad you posted this im really suspicious that my problems with

Reiter's are being cased by chlamydia deep in the tissues (i have a skenes

gland that was damaged it still doesnt drain properly it is the female

prostate/paraurethral gland) it has been bothering me for 20 years the best

urologists around here wont touch it because they think removing it will

leave me incontinent the glands on the right side and i have constant hip

pain (on the right side ) that i just live with i was treated with zythromax

when i was first diagnosed and it worked till i stopped taking itafter

several months so then i went back on it and it worked again that remission

lasted for a few years then i got sick again after having my daughter the

antibiotics didnt work that time and i ended up in a slow recovery and

having alot of accupunture and chinese herbs so i was relatively well for a

couple of years now im 18 months into a chronic urethritis which is making

me a bit insane! im doing dmso intraurethrally twice a day i think it is

helping a bit with the pain /inflamtion but im really curious as to what

antibiotics you have used for this i feel like im in the dark ages up here

in canada the rheumies i saw years ago wouldnt even discuss reiters with me

it was a total run around i have been seen by lots of specialists but get

the most milage from my gp who is at least willing to try things i dont know

if i have the genetic marker ( or if the test is even available to me )i

would like to try more antibiotics but am also pretty scared to at this

piont during the last year and a half it seems we have tried everything

(cipro/macro/penicillin/the quinolins? probably at least 10 different kinds

everything made the bladder/urethral pain worse and made me even more

miserable my body seems hypersensitive now i cant eat fruit or spices or

citic acid coffee alcohol or any of the other " trigger " foods my hormone

cycles trigger the heavy pain too so i spend half the month really out of my

head with it i would like to know if there are any accepted protocals for

reiters that my gp could oversee or do i have to be a part of a study or in

the states ? does anybody know any other tricks for getting the urethritis

to settle down( i have tried flomax

/minipress/gabapentin/elmiron/quercetin/prelief) im 35 and was involved in

the sex trade for nearly 20 years since age 13 i am sure i had more contact

with chlamydia than i could shake a stick at im sure ive been exposed to

things they havent even started to culture the stupid part is that aside

from being raped i have been scupulously clean and always used protection

for intercourse but for oral sex in the " trade " protection is unheard of so

anything that cant be transmitted orally goes around unchecked and nobody

ever says a thing about it doesnt make alot of sense but its a buyers market

i was so used to the rules of play that i guess i didnt question them and

then the medical attitude of if you get chlamydia take 3 zythomax and it

will be fine doesnt help either well sorry for the ranting thanks for the

help ............blessings bella

[Guest guest]

wrote:

" Our support group seems to have two different factions; one that wants to

separate itself from any kind of sexual cause and another group; of young people

who know we are all human and realize truth is the only way we will get well. I

know there is different ways to get this disease such as food poisoning, but I

would bet the majority of us got it through unprotected sex. "

I think you are dead wrong about this support group. I know that I know that

these diseases can be caused by several agents and doctors should check for them

all. As Connie has mentioned, most of us have been through hell and back over

20 - 30 years with these diseases and the cure of the day club. Some work, some

don't. I think you would have to say that 9 year old children that come down

with this stuff did not get it from Chlamydia. I know my grandson who is now

showing signs of a Spondy didn't catch it from Chlamydia as he is also 9 years

old.

But I think you are missing a major point. That point is that the wonky gene

that causes this stuff is passed down genetically. Sometimes, as in my case, it

skips a generation, so it is there all the time. You don't " catch " a Spondy at

all, you just catch something that triggers it and there are lots of triggers

out there. Yours happened to be Chlamydia, that is the luck of the draw. It is

one disease that needs a lot more research than it is given now.

As for your statement " I would be the majority of us got it through unprotected

sex " , I bet you are dead wrong again. There are a lot of us on the list that

actually grew up in a far different world. A world where most of us kept within

societal bounds of that era. Today we do not have those bounds and look what

has happened.

I believe that one cannot pin the triggers of our diseases on just one or two

" bacteria " there are many others so we have to keep an open mind.

Fr. Dave

who was not always a priest and who spent 35 odd years running away from the

call.

[Guest guest]

> had written:

> " Our support group seems to have two different factions;

> one that wants to separate itself from any kind of

> sexual cause and another group; of young people who know

> we are all human and realize truth is the only way we will

> get well. "

>

Connie, I agree wholeheartedly with you and Fr. Dave, and I

agree that has indeed got " the wrong end of the stick "

(as we say down under!).

It doesn't matter how we got this disease, what is important

is that we focus on providing support to each other.

Perhaps if all of us who posted, agreed to stop suggesting

'magic cures', it would help keep the focus on the important

part (of providing support).

[Guest guest]

,

Keep in mind that I am new here, so I may not be up-to-date on

everything. Your post is confusing to me - is ReA contagious? Nothing

I have read implies this. Regarding you wife needing antibiotics, are

you talking about the possibility that you have a chronic chlamydia

infection? I don't understand the link with sinus infections.

[Guest guest]

Connie said:

" Our Dr. Vassey may be able to use antibiotics to cure the

> infection that initially triggers our immune system to

> go into high gear, but he isn't changing our genetic

> makeup in any way...so the possibility of another bug

> causing our immune system to go hay wire is still out

> there. Your next bug might be something else that will

> cause a Reiter's flareup. "

Connie, this is so true. My intial flare was via food

poisoning, but my current one (the longest and most severe)

was triggered by stress caused by the terminal illness of a

loved one. Once the ReA has been triggered, non-bacterial

events can help it reoccur. My rheumatologist agrees that

stressful events can set things off.

All the best,