Does my husband have ReA, "Reactive Arthritis"?

[chessler]

My husband is 48 years old. He was diagnosed with Ankylosing Spondylitis when he was about 20 and was treated unsuccessfully for more than 20 years with anti-inflammatories. A new doctor said he never had Ankylosing Spondylitis. How frustrating!
A few years ago, as his symptoms continued to worsen, he underwent a nerve conductive study that showed that he possibly had Arachnoiditis. His testicals hurt so bad he can hardly sit for any period of time. This is affecting his whole life, especially work. He just lost his job. His boss calls it "cutting surplus" but we feel it's because he cannot work as long and hard as he used to.
He has tested positive for the HLA-B27 gene. He does have gastrointestinal problems. He had L5-S1 fusion in the fall of 2001 and developed a pretty serious illeous and hasn't been the same since. He has a difficult time urinating, but his urologist cannot find anything wrong. He was diagnosed with plantar's fascitis years ago and does well with shoe orthotics.
As I have been doing research, I keep coming back to this "Reiter's Syndrome" or ReActive Arthritis. We have an appt with a specialist at the Cleveland Clinic next Tuesday and are hoping to get some answers and help.
Is there anyone out there who has been diagnosed with this and what has your experience been like? Please let me know what to expect and what has worked or not worked.
Cindy

[AndyM64]

Hi. I am not a doctor but my own problems have led me apply my engineering degree to find my cure, as a problem to be solved. In my opinion your husband has ReA. The problem that confuses everyone about ReA, is the spread of symptoms. ReA, is not a disease it is a symptom. The collective disease is called Reiters Syndrome.  Therefore, in terms of non differential diagnostics the ReA component can be igored. Look at the other symptoms to identify the pathogen and then make a differential diagnosis ignoring the arthritisis. This will give you the differential route cause.

In my opinion, one issue that is not regularly discussed is Immune Mediation. For example Chlamydia if undiagnosed can find places to hide from your immune system. after initial infection, the immune system builds a respnse and within a few days symtoms start. Within a few weeks your imine system has the battle under control, the chalamydia is defending itself at the weak points of your immune system. Stalemate. Like trench warfare. The immune systems resources are critically and continually at 90% Chlamydia control. The remaining 10% of your immune system is left to deal with the other stuff you put in your body, cigarette toxins, volatile chamicals from fuel and additives to food and almost worst of all sugar. You then pick up a fingus at the pool and your system can't deal with it. Chlamydia moves forward. Joints inflame and the body shuts down other functions to resource the immune system.

Other opportunistic bacteria, spores and fungi, can then infect the gut and other areas that would normally be patrolled and balanced by your bodys controls.

The final requirement is to determine the pathogen.

In my case my symptoms narrowed the pathogen to Chlamyia, Candida and  Leptospiro. After 23 years of symptoms, I took a single dose of Azithromycin (1000mg). I woke up the next day symptom free and until recently they had not returned. Tests did not identify the pathogen but my research concludes that Chalymidia is the only agent that could have provided  the basis for all symptoms and responsive to azithromycin.

The difficulty you have is to find the culprits hidding place. Chlamydia is most likely Fungal infections are likely to be secondary due to immune system compromise. Other possibilities less likely can be Leptospirosis whoch can also become HPL (Human Persistent Leptosprosis)

These two Leptospirosis and Chlamydia have many sero types. They are very adaptable and an infection may not result in everything from death to nothing. Chlamydia does not respond to Gram Stain testing and so is called gram negative.  This means complex testing is required. Also as it is Immune Mediated, the infection will not appear in the blood or urine. You have to locate the possible hiding places, eg wrists, bones, white tissue and extermities anywhere there is no blood low. There may be very few pathogens and detection is almost impossible. Thsi is why I beleive that in the case of suspected Reiters Syndrome, you may have to accept that an actual pathogen will not be found, that the Medical Profession may continue to treat the many symtoms and you may continue to suffer.

I hope that this advice has been helpful. I am standing in the light at the end of a 23 year long tunnel.

[smittygirl]

Hi Cindy,

I was dx with Reactive Arthritis 4 years ago.  I have the HLA B27 gene as well and mine was triggered by a UTI, e coli bacteria.   I was in a wheelchair for 4 months.  I was a marathon runner and triathlete before it happened.  I literally woke up one day and could not move a bone in my body.  My feet, knees, hands were the size of melons!  2 dr's told me I had polyarthritis which meant they didnt know what I had.  Long story short I went on line and looked at all of the 100 different types of arthritis, when I got to the R's there it was!   I had an appt at the Mayo Clinic and the doc there said he woudn't charge me for the visit because I had dx myself and I did indeed have Reactive Arthritis.  I have been on every drug they make for it and nothing worked for me.  I started using Enbrel 4 weeks ago, an injection I give myself once a week.    Based on the fact that he is HLA B27 positive and has gastro issues I think it is text book ReA.  It is much more prevelant in men between 20 and 40.  I am a woman and was 46, so go figure!   Does he have swollen and stiff joints?

Sue