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Reactive Arthritis

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hi mona

have you seen barbara allan's book on conquering reactive arthritis?

google for her website too.

monique

Hi-I tried the l-lysine for 6 weeks and found it didn't help at all, so

I stopped it. I have Reactive Arthritis.

Mona

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Hi, ,

Thank you so much for the advice. I will check into it today.

Mona

rheumatic Re: reactive arthritis

hi mona

have you seen barbara allan's book on conquering reactive arthritis?

google for her website too.

monique

Hi-I tried the l-lysine for 6 weeks and found it didn't help at all, so

I stopped it. I have Reactive Arthritis.

Mona

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  • 8 months later...

Can anyone give some information about reactive arthritis treatment, two month

ago my girl friend got Chlamydia and Micoplasma, I started getting a discharge

but I was treated by some antibiotics, however a week later I started getting

joint pain in my ankles and my right elbow.

I went to few doctors but they are worthless where I live at the

moment they diagnosed it as a " non-specific arthritis "

I started reading some rheumatology books and topics and learned I have

" Reactive Arthritis " most probably because I have HLA-B27 gene in my blood

(Which I tried to test but the lab didn't have any idea what am talking about)

so I started my own treatment of 100 mg of Doxycycline and 100 mg of Diclofenac

daily, I've been on this treatment for one month now, I'm feeling a bit better,

I can walk on a stick now even if I don't take the Diclofenac I can still walk

with pain.

The problem is I don't know if my dose is right, and if I need to stop taking

the Diclofenac at some point (I got a rash in the corner of my mouth three days

ago so I decided to stop it but I cant move around well)

Please advice me if you are a doctor, or share your treatment experience if you

were a patient.

What country do you suggest I go to for such case?

Regards everyone

Ahmed

Doha, Qatar

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Ahmed,

Did you already try the Hamad Medical Corporation?

Not an MD

On Sat, Oct 17, 2009 at 9:00 AM, hamoksha2000 <ahmed.fawzi@...> wrote:

> Can anyone give some information about reactive arthritis treatment, two month

ago my girl friend got Chlamydia and Micoplasma, I started getting a discharge

but I was treated by some antibiotics, however a week later I started getting

joint pain in my ankles and my right elbow.

> I went to few doctors but they are worthless where I live at the

> moment they diagnosed it as a " non-specific arthritis "

>

> I started reading some rheumatology books and topics and learned I have

" Reactive Arthritis " most probably because I have HLA-B27 gene in my blood

(Which I tried to test but the lab didn't have any idea what am talking about)

so I started my own treatment of 100 mg of Doxycycline and 100 mg of Diclofenac

daily, I've been on this treatment for one month now, I'm feeling a bit better,

I can walk on a stick now even if I don't take the Diclofenac I can still walk

with pain.

>

> The problem is I don't know if my dose is right, and if I need to stop taking

the Diclofenac at some point (I got a rash in the corner of my mouth three days

ago so I decided to stop it but I cant move around well)

>

> Please advice me if you are a doctor, or share your treatment experience if

you were a patient.

> What country do you suggest I go to for such case?

>

> Regards everyone

>

> Ahmed

> Doha, Qatar

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Yeah I did

but their triage diagnosed it as non-specific arthritis, and they gave me an

appointment with a consultant in 45 days which is in 3rd of November.

do u know any specific doctor i can refer to here? I'm loosing faith in doctors

here.

Ahmed

>

> Ahmed,

>

> Did you already try the Hamad Medical Corporation?

>

>

>

> Not an MD

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Hi, Ahmed. I'm not sure.

I found Hamad Medical by searching for people and events related to

rheumatology in Qatar - that name kept coming up.

Perhaps you could see Dr. Mohammed Hammoudeh (see the article below)

or call his office for a recommendation? I would tell them you suspect

reactive arthritis.

http://www.ameinfo.com/144408.html

Not an MD

On Sat, Oct 17, 2009 at 2:04 PM, hamoksha2000 <ahmed.fawzi@...> wrote:

> Yeah I did

> but their triage diagnosed it as non-specific arthritis, and they gave me an

appointment with a consultant in 45 days which is in 3rd of November.

>

> do u know any specific doctor i can refer to here? I'm loosing faith in

doctors here.

>

> Ahmed

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Thanks a lot

I contacted a friend of mine who works there he said he may be able to get me an

appointment with him :)

however I would love if members can share with me their experience in this

sorry it might be a stupid question but i'm just new here and dont know how it

works exactly

>

> Hi, Ahmed. I'm not sure.

>

> I found Hamad Medical by searching for people and events related to

> rheumatology in Qatar - that name kept coming up.

>

> Perhaps you could see Dr. Mohammed Hammoudeh (see the article below)

> or call his office for a recommendation? I would tell them you suspect

> reactive arthritis.

>

> http://www.ameinfo.com/144408.html

>

>

>

> Not an MD

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Hi, Ahmed.

Most of our group members have rheumatoid arthritis, and that is quite

different than reactive arthritis.

This might be of help:

http://risg.org/blog/

Not an MD

On Tue, Oct 20, 2009 at 12:17 AM, hamoksha2000 <ahmed.fawzi@...> wrote:

> Thanks a lot

>

> I contacted a friend of mine who works there he said he may be able to get me

an appointment with him :)

>

> however I would love if members can share with me their experience in this

>

> sorry it might be a stupid question but i'm just new here and dont know how it

works exactly

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oh thanks a lot for the link, :)

thank you for all the help and concern really.

my girlfriend today told me she saw a report on permanent treatment for

arthritis on Czech TV, and its applied in Spain, she didn't give me much

information but what i understood from her is that they inject the infected

joints with treated blood and it heals up the joint permanently withing a year,

do you have any more info about that?

Regards,

Ahmed

>

> Hi, Ahmed.

>

> Most of our group members have rheumatoid arthritis, and that is quite

> different than reactive arthritis.

>

> This might be of help:

>

> http://risg.org/blog/

>

>

>

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I'm not sure what process you are describing, Ahmed.

Not an MD

On Tue, Oct 20, 2009 at 12:47 PM, hamoksha2000 <ahmed.fawzi@...> wrote:

> oh thanks a lot for the link, :)

>

> thank you for all the help and concern really.

>

> my girlfriend today told me she saw a report on permanent treatment for

arthritis on Czech TV, and its applied in Spain, she didn't give me much

information but what i understood from her is that they inject the infected

joints with treated blood and it heals up the joint permanently withing a year,

do you have any more info about that?

>

> Regards,

>

> Ahmed

>

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Are you thinking of PRP therapy maybe?

http://www.orthohealing.com/

> > oh thanks a lot for the link, :)

> >

> > thank you for all the help and concern really.

> >

> > my girlfriend today told me she saw a report on permanent treatment for

arthritis on Czech TV, and its applied in Spain, she didn't give me much

information but what i understood from her is that they inject the infected

joints with treated blood and it heals up the joint permanently withing a year,

do you have any more info about that?

> >

> > Regards,

> >

> > Ahmed

> >

>

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  • 8 months later...
Guest guest

I did a lot of courses of cipro, but let me explain something

interesting.

I had tried a few different abx before Cipro without any success but

had read Cipro was good for

prostatitis and since i had had a flare of that early on, it sounded

like a good experiment. The recommended corse was 6 weeks,

however, I could only mange about 3.5 weeks the first time around,

since the dieoff was pretty heavy. This did not work, but it did

something. I would describe it as about a 25% assault, it seemed to

help but soon the babies were back in full swing. I knew the 4 week

mark was a key to get past since this was the cycle i had read about

in some obscure texts. Hence the second attempt a few months later

with cipro at again 1.5g (max) dose per day and a lot of water to

hydrate the tissues and flush out the toxins. After 6 weeks i

stopped, after another 2 weeks later i woke up one day and at lunch

felt a rush over my body which i can only describe as a lift. From

then on the major rampant infection was dead. However, after a few

more weeks another problem started and the colon went south, this

went on for many months and did much damage, the silly drs could not

figure it out nor provide basic testing, eventually after 6 months i

had a private stool analysis done at a very prestigious lab called

parascope (now closed) who found campylobactor, they recommended 2

weeks cipro.... ironically i had it in the draw the whole time.

Following that I did biaxin to clear the back and prostate and other

hot spots, and never really got the colon back, then a few years ago

worked out it was all alleges, corn, gluten, dairy, and now with vits

and minerals and strict abstinence from allergens its again changing

the terrain. I also found antifungals lamisal and non systemtic,

diflican, nystatin etc. to help alot.

cipro gets a bad wrap but its the only abx I believe can kill ReA.

best

steve

On 25 Jun 2010, at 19:54, Mona Goldstein wrote:

> Hi. I have been " hiding " for awhile since my ReA has flared,

> together with

> my new illness-Fibromyalgia. I am one of those that has a negative

> HLA B27

> positive, and yet have a chronic case. My story might be related to

> the

> chronic state-I had a laparoscopy, and developed an infection at

> the surgery

> sight.I suffered with the infection for two months, while the

> doctors messed

> around with me. Finally the infection got into my bloodstream, and

> I was put

> on IV antibiotics for a few weeks. Abt 1 month later, I started

> feeling pain

> first in my shoulder, and then progressively in different joints,

> one at a

> time. I left my internist and surgeon, finally as I kept on getting

> sicker

> and sicker. Abt a year later, I was diagnosed with ReA, and treated

> with all

> of the TNF blockers, etc. Only Doxy and Minocin seemed to

> successfully treat

> my ReA, so that I wasn't in constant pain.

> Lately, my dr. began cycling the Minocin with Tetracycline, to try

> to push

> the minocin to work better(Doxy doesn't work for me anymore). I'm

> also on

> 900 mg. of gabapentin (Neurontin) every day. I feel great on

> beautiful days

> and I walk 3-4 miles a day, but these days aren't often enough on Long

> Island, where I live. The day before rain, I am in a lot of pain

> and am so

> exhausted that I sleep a lot and waste the day away.

> Do you think it would work if I went on the Cipro, the way it was

> described

> here? Any ideas that could help me?

> Thanks, Mona

>

> rheumatic ok, here goes...

> >> > > rheumatic

> >> > > Date: Tuesday, June 22, 2010, 7:02 PM

> >> > >

> >> > >

> >> > >

> >> > > Another newbie here. I've been reading for a little over a week

> >> and

> >> > > I guess I'm ready to start posting...

> >> > >

> >> > > I am a 34 year old mother of 3. I was diagnosed with RA about 8

> >> > > months ago after about 6 months of being told that I had

> chronic

> >> > > EBV by my family Dr.

> >> > >

> >> > > I have completely normal blood work and no swelling. My

> diagnoses

> >> > > was based on morning stiffness and the fact that 1 erosion

> showed

> >> > > up on x-ray. I have, from the beginning questioned my diagnosis

> >> and

> >> > > the treatment plan (methotrexate) that my rheumatologist

> >> > > recommended. Here's how it started...

> >> > >

> >> > > I woke up one morning with a scratchy throat. The next day

> it was

> >> > > worse and looked red with white spots. I NEVER get sick and

> have

> >> > > never had strep. I assumed that I had a little virus. We were

> >> going

> >> > > out of town and I'm not one to let a little sore throat ruin a

> >> > > family trip. The next day it was even worse and I had a

> fever and

> >> > > chills and was just exhausted. I was out of town with no

> access to

> >> > > our local Dr. I decided to wait and see and make an

> appointment if

> >> > > I wasn't better the next day when we got home. The next day

> I WAS

> >> > > feeling better. I was on the mend! I had 2 good days, we

> worked in

> >> > > the yard, everything was great. I went to bed one night and

> >> woke up

> >> > > the next morning in agony. My entire body was on fire. I was so

> >> > > stiff that I literally could not get out of bed (I know that

> many

> >> > > of you have been there).

> >> > >

> >> > > I loaded the kids up in the car to go to the store for some

> >> > > ibuprofen and I couldn't even shift the gear shifter. I was in

> >> > > tears trying to hold onto the steering wheel! I decided that

> the

> >> > > yard work was just too much too soon after being sick, but I

> knew

> >> > > that this was different than just being sore. I finally went

> into

> >> > > the Dr. They did a strep and mono quick test and both were

> >> > > negative. I was told that it was mono, that the test was

> surely a

> >> > > false negative. Given a scrip for Celebrex and sent on my

> way. At

> >> > > the time, I was CONVINCED that I did NOT have mono. I've always

> >> > > believed that antibiotics are overprescribed by drs, but I was

> >> > > upset that they wouldn't give me an antibiotic. I was SURE that

> >> > > whatever I had would be helped by a simple antibiotic.

> >> > >

> >> > > The Celebrex did help, but I was still in lots of pain and very

> >> > > stiff in the mornings and after sitting for more than 30

> >> minutes. I

> >> > > went back to the Dr two weeks later. They told me that it was

> >> still

> >> > > mono and at my urging, did further blood work. Everything

> looked

> >> > > normal and I showed EBV antibodies, the dr told me to just

> let it

> >> > > run it's course. To get lots of rest (haha! I have 3 small

> >> > > children!) and that I would feel better in a couple of weeks.

> >> > >

> >> > > Two months later, still in pain, I went back to the Dr

> again. This

> >> > > time I was told that it must be chronic EBV and that I would

> just

> >> > > have it for the rest of my life. At this point, I was calling

> >> BS. I

> >> > > KNEW that something else was wrong with me! I did research

> and my

> >> > > symptoms did seem to match, but in my gut, I felt that it

> was the

> >> > > wrong diagnosis.

> >> > >

> >> > > I decided to up the ante and a nurse friend recommended that

> I see

> >> > > a rheumatologist. She is fairly confident that it is RA, and it

> >> > > still might be, but I still feel like it is not an exact fit.

> >> > >

> >> > > Here are the arguments for and against...

> >> > > I have one wrist that showed erosions, but I have had an

> injury to

> >> > > that wrist and have had problems with it for 8 years, so the x-

> >> rays

> >> > > could be showing damage other than RA.

> >> > >

> >> > > The onset was sudden. Sudden onset does happen in RA, but it

> seems

> >> > > to be fairly rare.

> >> > >

> >> > > I am seronegative. Again, that does happen.

> >> > >

> >> > > I have NEVER had an elevated sed rate. I have had 8 set of

> >> > > bloodwork over the course of 15 months and even when I was

> at my

> >> > > worst, nothing in my bloodwork was out of the ordinary.

> >> > >

> >> > > My stiffness is worse in the morning and when I've been sitting

> >> > > (typical RA)

> >> > >

> >> > > After a shot of prednisone in the rear I was almost symptom

> free.

> >> > > The dr said it would last from 2-6 weeks, mine started tapering

> >> off

> >> > > after almost 3 months. Dr felt that the good reaction to

> >> prednisone

> >> > > pointed toward RA.

> >> > >

> >> > > Anyway, long story short. I am not a " do whatever the dr says "

> >> type

> >> > > of person. My rheumatologist has really been pushing me toward

> >> > > methotrexate. The thought of that stuff makes me want to run

> away

> >> > > screaming. I decided to try sulfasalazine a few months ago. It

> >> > > seemed to be the lesser of the two evils and I was feeling

> pretty

> >> > > hopeless at the time.

> >> > >

> >> > > When I found this group, it was like a lightbulb coming on.

> From

> >> > > the beginning, I felt like my problem was infectious and

> would be

> >> > > helped by antibiotics. The drs looked at me like I was crazy

> for

> >> > > suggesting it and for a while I thought they might be right.

> >> > >

> >> > > I would appreciate any feedback. I'm sorry for posting my whole

> >> > > long sob story, but I honestly feel like I need to treat the

> >> source

> >> > > of my problem and not the symptoms and I'm hoping that someone

> >> else

> >> > > on here can share their success and help to point me in the

> right

> >> > > direction.

> >> > >

> >> > > I live in the Dallas area.

> >> > >

> >> > > Thanks!!!!

> >> > >

> >> > >

> >> > >

> >> > >

> >> > >

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Guest guest

Thanks so much for your replies. I went today to the new Rheum that was on the

list provided by this group. I'm hopefull that I'm in the right place this time.

The rheum explained that their philosophy is that ReA and AS are responses that

the body has when it's had a " trigger " - bacteria, toxin, etc. And that they

believe the traditional therapy of treating the symptoms is ineffective.

They drew 24 vials of blood and have me on a detox while we wait for the

results. I have a followup in three weeks.

Thanks for the help and support,

Beth

>

> From: Agentbleu <colourbleu@...>

> Subject: Re: rheumatic Re: Reactive Arthritis

> rheumatic

> Date: Sunday, June 27, 2010, 8:45 PM

>

> In me and ReA there was no organ unaffected. The only abx that worked 

> to kill it was Cipro, but I took biaxin for about 2 years on and off 

> also.

>

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Guest guest

It is interesting that there doctors/specialists who have the courage to say

'traditional methods of treatment simply don't work' which is the truth !!  My

hat off to those Dr's.

I am sure now you have a doctor who understand & listens it will be full steam

ahead to get on top of things from now on.

Good luck,

Maz

________________________________

From: beth.johnston95 <bethevans1925@...>

rheumatic

Sent: Wed, 30 June, 2010 10:00:39 AM

Subject: rheumatic Re: Reactive Arthritis

 

Thanks so much for your replies. I went today to the new Rheum that was on the

list provided by this group. I'm hopefull that I'm in the right place this time.

The rheum explained that their philosophy is that ReA and AS are responses that

the body has when it's had a " trigger " - bacteria, toxin, etc. And that they

believe the traditional therapy of treating the symptoms is ineffective.

They drew 24 vials of blood and have me on a detox while we wait for the

results. I have a followup in three weeks.

Thanks for the help and support,

Beth

>

> From: Agentbleu <colourbleu@...>

> Subject: Re: rheumatic Re: Reactive Arthritis

> rheumatic

> Date: Sunday, June 27, 2010, 8:45 PM

>

> In me and ReA there was no organ unaffected. The only abx that worked 

> to kill it was Cipro, but I took biaxin for about 2 years on and off 

> also.

>

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Guest guest

Where is this amazing person? Oh please say close to my home state. You have

no idea how lucky you are to connect with this doctor!

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of beth.johnston95

Sent: Tuesday, June 29, 2010 8:01 PM

rheumatic

Subject: rheumatic Re: Reactive Arthritis

Thanks so much for your replies. I went today to the new Rheum that was on

the list provided by this group. I'm hopefull that I'm in the right place

this time. The rheum explained that their philosophy is that ReA and AS are

responses that the body has when it's had a " trigger " - bacteria, toxin,

etc. And that they believe the traditional therapy of treating the symptoms

is ineffective.

They drew 24 vials of blood and have me on a detox while we wait for the

results. I have a followup in three weeks.

Thanks for the help and support,

Beth

>

> From: Agentbleu <colourbleu@...>

> Subject: Re: rheumatic Re: Reactive Arthritis

> rheumatic <mailto:rheumatic%40>

> Date: Sunday, June 27, 2010, 8:45 PM

>

> In me and ReA there was no organ unaffected. The only abx that worked

> to kill it was Cipro, but I took biaxin for about 2 years on and off

> also.

>

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  • 2 weeks later...
Guest guest

Hi Beth,

Is this doctor by any chance Kemp?

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of beth.johnston95

Sent: Friday, July 02, 2010 5:22 PM

rheumatic

Subject: rheumatic Re: Reactive Arthritis

Hi Cooky

The doctor is in VA. I have to drive 1 1/2 hours to get there because I live

in a rural area but I am really hoping that this is the beginning of a

steady recovery for me.

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