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Reactive Arthritis - 2 years- Not going All????

Posted , 10 users are following.

Vincentworld
Vincentworld

I hope someone can help me here, I am desperate and no where to go.

About two years ago I came down with some sort of urinary infection. I was tested for chlamydiae & Gonorrhea (GC) before going on any medicine. Results, negative.

4 weeks post exposure – started getting joint pain, prostatitis, mouth sore, burning eye, and ill feeling.

Went to Infectious disease physician – he said this sounds like ReA. Reactive arthritis and it will go away. I wish he was right.

Doc, decided to run testing for GC, Urine culture, HIV 1/2, EBV, CMV, RPR, CBC, ESR, CRP, CK, ANA, Rheumatoid Panel, and some infectious stuff.

I was tested for Chlamydia & Gonorrhea of Urine using NAA DNA test. And C. trachomatis, C.pneumoniae or C. psittaci using IGG / IGM. Results: Negative. No post exposure ever detected. Nothing.

Results – Negative.

My blood was spanking clean except high CK Total level. This is 8 weeks post exposure.

Doc decided to give me Doxy 100mg for 30 days, Z-Pack for 30 days, and Cipro 30 days. I took all those throughout 5 month period.

NOTHING HELP.

Joint pain continue and eventually started causing Spine pain and stiffness along with neck pain.

One year exactly, I ask my doc about Flagyl. He prescribe and I took it. WOW, Flagyl instantly gave me pain relief and decrease in symptoms. My physician thought it must be anti-inflammatory effect.

I said what the hell it helps so I keep taking it on and off. Ok so at this point i’m able to control my pain.

However, (present day 1 year and half) post exposure – I decided to see rheumatology who decided to do X-Ray and MRI of SI Joint. Results: Negative, no inflammation seen.

rheumatology is confuse and says I should take prednisone -> Sulfasalsaine -> TNF Blocker.

I kindly told doc, FLAGYL helps. rheumatology says impossible and no such thing.

Here i am today, all my blood work is negative except high CK level (600). rheumatology is asking I get EMG test done next week to rule out muscle disease which he thinks has nothing to do with arthritis pain. Two different issues. 

Over last two years I’ve seen 5 Urologist, Rheumatology, 1 ID doc. None of these guys are able to pin point or cause of triggering bacteria.

Urologist has done prostate secretion for anaerobic and aerobic culture along with urine culture. Results: Negative. No growth.

Flagyl is only antibiotics that helps with all my symptoms but they come right back if I stop FLAGYL even for a day. So I decided to take PREDNISONE to see if it helps.

Could anyone here help me out? How did this immune process start? Is there an active infection? Is this disease like an on switch type?

I am confuse and I am not sure which doctor to see because none of them are helpful.

I don’t mind taking Flagyl for ever / Doxcy.

My ID doc is thinking of trying bacterim ds, he says ReA / AS can be cause by klebsilla bacteria.

MY ESR AND CRP has always being normal and no bacteria was ever found in my urine.

As of writing, I still have symptoms of prostatitis, joint pain, eye pain, ankle, knee, hip, spine stiffness and extreme fatigue. 

I'm currently taking Doxy and Flagyl along with Duexis just to see if AB makes difference. I plan on taking doxy for 3 months before moving on to Bactrim. Levo / cipro i'm allergic to.

What should I do? 

P.S. Prednisone - does not work it makes joint pain worse. 

Thanks

B

2 likes, 32 replies

32 Replies

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  • Vincentworld
    Vincentworld

    Posted

    Doc is thinking about Sulfa immuno suppresive as next step. 

    But what is the trigger? UTI??? What bacteria? My main concern is could i still have the triggering bacteria  in uretha?

    I've tried Doxy, Cipro, Zpack, Flagyl, Tindamax.

    I'm thinking of doing Bactrim ds? 

    Aka could trigger event be in my prostate???

    does ReA not go away on its own?

  • jane44467
    jane44467 Vincentworld

    Posted

    Hi there

    I'm so sorry to hear you are suffering. It's a wretched illness- I had it nearly two years ago but am now fully recovered. I can tell you what I did and I hope it may help. I researched the Internet for a long time and came up with some natural anti inflammatory remedies as follows: turmeric tablet (which contain curcumin) frankincense tablets, a probiotic for the stomach called Probio7, omega 3&6 capsules, natural water retention tablets. My rheumatologist gave me prednisolone too. There is so little research about this illness! I also had hydrotherapy for my joints once I started to get better, which was fantastic. I hope this helps and I wish you well as soon as possible.

    • Vincentworld
      Vincentworld jane44467

      Posted

      Hi I've taken prednisone before. It made other joints in more pain than before.

      It did help with back stiffness but not get ride of it.

      But my is not going away it keeps coming back and progressing I'm not sure how my idiot doc not see this.

      I'm frankly tired of going to physician it's either they don't know much about it or they don't care

    • Vincentworld
      Vincentworld jane44467

      Posted

      I've been taking Tumeric evern since you mention. IT doe not work. 
    • ginaji
      ginaji jane44467

      Posted

      Hi Jane,

      How much curcumin did you take daily? I have been taking 500mg twice a day for a week. I was diagnosed with ReA last month (swollen knee). I was alright in a couple of weeks but started having pains 10 days back. Knee, then lower back.

      Thanks

  • john66751
    john66751 Vincentworld

    Posted

    Hey vince from forgot to say the antibiotic in sulphersalazine doesn't actual kill bacteria but help phohibit it growing ...as you say antibiotics help you so with this and it lowering of the immune system to stop it attacking you sounds like it could help you 
    • Vincentworld
      Vincentworld john66751

      Posted

      John,

      Thanks for getting back to me with some great tip. I spoke to my Rhemmy and hes not yet interested in jumping the shot gun about immuno suppresive drugs. 

      However, my Infectious disease doc says if I want to try bactrim hes okay with it. The problem with Bactrim is that I tried it before and within 5 days I started having horrible ear pain. So I'm not sure if i'm allergic to it or not. 

      However, I'm really thinking about trying Bactrim. Does Bactrim work again protozoal?? 

      The reason I say is this because Flagyl seems to work and help mellow out the arthritis pain, but far from a cure. 

      So what its doing is that its suppressing the immune system / the bug and delaying the response. However, if I go off Flagyl all my symptoms return. So the drug is doing something.

      My doctors have no clue why Flagyl is working for arthritis as there are no studies indicating such response. And this is coming from 10 different physician I've seen. So you can see its hard to convince the doc that Flagyl is working.

      I got my ID doc to write me 6 refills so I'm okay but I don't think I want to take FLAGYL forever.

      Is immune suppresion drugs the only answer in truning this response off?

       

  • expandingman
    expandingman Vincentworld

    Posted

    Vincent, I'm very glad to have found this post. I, too, have nearly the same symptoms as you. I have been dealing with mine for at least five and a half years. There is way too much to go into at the moment, but I will hit some of the highlights:

    I developed prostatitis about 13 years ago (the joint pain began in the summer of 2010). I never tested positive for anything, although I have been tested many times over the years. No drugs I took had any effect except Flagyl. The flagyl had definite effects for the prostatitis. However, I was taking Septra DS at the same time I took Flagyl. I am very curious to know the dosage of the flagyl you have taken and for how long.

    Secondly, I have also noticed that corticosteroids such as prednisone and injections clearly make the symptoms worse.

    I have been to see just about every type of doctor one could conceive of who might know something about this, and nothing really comes up positive. Most seem to think it is reactive arthritis, but can find no causative agent. Based on everything I know, I am convinced mine is a response to something I contracted from a female.

    Once again, please let me know the dosages of flagyl and how long you took it. In the meantime, I will try to come up with a more extensive series of events, which I think may help you and others. By the way, it sounds as though you have tried the drugs that clear most of the common bacteria. Have you looked into ceftriaxone? The CDC recommends it as a first line of defense for gonorrhea. I know you tested negative for it, but I have a very strong suspicion that testing for these things is not nearly as fool proof as many believe. I am also wondering if you have ever been tested for trichomonas. I believe you said you are married. Have you and your partner had extensive testing? It's doubtful you would test positive for trich now, with all the flagyl you have taken, unless you and your significant other are reinfecting one another.

    Take care

    • Vincentworld
      Vincentworld expandingman

      Posted

      Hi, wow..your case is like mine. I can't believe it. Finally, one possible individual like I. Do you live in US?

      As for as med goes, I've taken everything except cefriaxone. My infection disease doc does not think I have any infection but yet I can't get these guys to believe me that FLAGYL freaking works. It really helps my none infectious ReA ngu. However, FLAGYL does not stop the disease from progressing.

      My spine is geratly being affected by this disease. I am waiting for my doc to write me a script for HUMIRA.

      I have been tested for Trich - negative and Gonorreha - negative along with Mycoplasma Gentialiam using DNA test - negative. 

      I have been tested for all these disease by post void urine. A prostate massage first, then I pee and we take that sample off to lab. Nothing was ever found. 

      I think what me and you have is a " fastidous bacteria ", these bacteria multiple quick and hard to detected.

      2 years later and I am still having the same symptoms why? I think I still have the bacteria in prostate that is causing immune system to mediate. 

      This is why Prednisone is making prostate issues so much worse because its lowering the immune system. 

      I can tell you for sure I have taken every combo possible such as Flagyl + Doxy , Flagyl + Cipro, Flagyl , Cipro, Doxy, Azithromycine. All for 30 days each. 

      I take Flagyl 1500 mg a day for 2 weeks striaght. Then stop. Then start again for two weeks. 

      I don't think its Trich. My wife never complains about Trich nor Gonorreha. Her STD test was negative and she was check for this because she is pregnant. 

      My infection Disease doc and Urologist do not believe Trich to be cause of ReA and that they never heard of . Also, trich should go away. 

      What we are dealing with is Anarobic Bacteria. These bacteria can form BioFilm. 

      Please, tell me about your ReA how has it affected you? Where you tested for anything?

      What other drugs have you taken besides Flagyl?

      If your in the US i would love to give you  a call and chat about this issues / come up with some sort of game plan.

      Also, Bactrim DS should be good / worth a try with Flagyl cause that drug does go after Anarobic and Protozon. 

      However, I am allergic to Bactrim so I am asking my doc to write me a script for Trimethoprim. 

      I plan on taking Trimethoprim and Flagyl to gether in couple weeks see how that works. 

      I can't not imaging our situation. We are def very very very rare case. Most physicians have never heard / seen our type of case. We are turly a medical mystry for them to study.

      Have you tried ceftriaxone? 

      I am married and I cannot tell my spouse anything - besides did you read what my exposure was ??? A hand job with lotion. 

      How can anyone get any bacteria this way?? Most doc laugh at me when I say this to them how all this started. They say no way and I'm making this up. 

      How??

      Please stay in touch mate. 

      Thanks

       

  • johnjohnS
    johnjohnS Vincentworld

    Posted

    I also have prostatitis symptoms, which worsen when the reactive arthritis increases. My RA has been in various states of activity for the past year, but has not abated enough to exercise and I have increasing and constant pain and tension in joints and muscle spasms in surrounding tissue when the joints are not hot. I am trying something new here and have posted a thread about it, but I wanted to mention that one thing in your thread that helped me get out of bed again after the initial severe attack is active B vitamin therapy. You do a genetic test, upload it into the nutrahacker site, and see what form of b vitamins you need (they vary drastically!). In addition, Freddd at phoneixrising (search it) has created a general protocol, which I adapted to myself using my own genetic profile & reports.

    If you're interested in more intense, non pharmacological therapy, please check out my other thread on this forum.

    • Vincentworld
      Vincentworld johnjohnS

      Posted

      John,

      How long have you had arthritis? Do you have spine pain?

      Do you know what trigger your reactive arthritis?

    • johnjohnS
      johnjohnS Vincentworld

      Posted

      Long enough to be beyond the threshold to know it's not going away. Yes, I have pain all over. The trigger was a GI infection.
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