Home Forums General Discussion My story: reactive arthritis

Viewing 15 posts - 1 through 15 (of 40 total)
  • Author
    Posts
  • #457747
    eagle26
    Participant

    Hi friends. I have just found this site as a coincidence while I was surfing the net. I was diagnosed with reactive arthritis after a urinary infection. It has been two years now but no relief at all. I am living in Turkey which there are as far as I know no doctors at all applying the AP therapy. When compare the medical system in here with developed countries, it is mostly based on using old fashion ways like using dmards for rheumatologic ilnesses. I have been to many docs in universities (research hospitals mostly) in different fields especially to urologists and rheumatologists.No stds no bacteria ever found. All my tests including crp, sed rate were in the limits just a bit higher white blood celss rarely. I had 5 months of remission in between but I think now it gets chronic. Before that I used nsaids for pain and inflamation. One of my doctor offered sulfasalazine which he thought uit using for my pain and prostatitis but we found out I am allergetic to sulfa drugs. He was no information about AP treatment and rejected me. Also I am allergetic to tetracycline family of antibiotics.
    I have heel spurs and a mild pain in both knees. My main problem is burning in urination and frequency most of the time tht some urologists say it is prostatitis. I think may be someone in the forum can help me and direct me into a treatment. I need suggestions definately. I reject using dmards and tnfs because I have a mild disease. I am eager to use AP therapy but there are no docs here implementing it. General practioners never give antibiotics without a proven bacteria here.
    So what should I do? Which antibiotic should I use. At first macrolides were good for pain and urinary symptoms. I give impotance to my diet meanwhile in this time. I also use some supplements and herbals containing krill oil, prebiotics, black cumin seed oil which is known in muslim countries as cure for all disease. Thanks god I have never bed ridden . I can do my daily chores and I am able to work as a half men bacuase of my ilness.
    Sorry for my bad English and typing errors. I tried to explain my problems. Thanks for everything for every suggestion.

    Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
    NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.

    #457751
    lynnie_sydney
    Participant

    Hi eagle26
    You may be interested in reading the 2 latest posts on our Blog which are on reactive arthritis:
    https://www.roadback.org/blog/reactive-arthritis-causes-and-treatment/
    https://www.roadback.org/blog/reactive-arthritis-nutritional-factors-in-healing-part-two/

    Your English is very good. (And, by the way, most Doctors everywhere prescribe DMARDS and immunosuppressive drugs for rheumatic illnesses). There is a very experienced semi-retired AP Doctor in Iowa who will freely consult with a doctor in your country by email if you can find a GP willing to do this. Maz on this board will assist in getting you those details if you’re interested and I’m sure she and others here will have some suggestions for a way forward for you.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #457752
    Maz
    Keymaster

    Hi Eagle,

    I’d suggest getting in touch with the author of this study who is Turkish. He’s run a number of studies on rheumatic diseases you can find on wwww.pubmed.com. Click “Additional Article Information” under the title to find his contact info.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3883615/

    He’s not on our list of AP providers, but sure would like to know if he’s a practicing physician and if we could add him. He’s a strong advocate of infectious causes for rheumatic disease! If you discover anything, please Let me know. If that is a dead end and you can travel, there are AP docs listed for Italy, Egypt and U.K., as well as the doc Lyn mentioned above who will consult with local docs but I am hopeful the doc in the study above might help you.

    #457757
    eagle26
    Participant

    Thanks Maz and Lynnie.
    Maz I will absolutely send an e-mail to doctor Ogrendik including my story . I will let you know the details for sure. It is a bit far away from the city I live. However, may be he has got a doctor friend sharing his thoughts about AP in my city who may help me. Or else he convince my doctors here consulting me. I can not travel to abroad .
    Lynnie these articles are a great source of information. I will add vit C to my supplement list as the article suggests. Now I understand why Hydroxyzine helps me much. It is an histamine supressing drug I use for sleeping well that I forgot to mention in my story. Strangely it is good for my prostatitis too.
    I have questions to both of you. Where can I find more info about AP protocols? I do not know where can I find info about because I am new to the forum. Can I start AP therapy on my own? Do I need regular blood checks? and My last question is about supplements? Are there any other supplements that helps for inflammation and pain of reactive arthritis. do you know any other friends in the forum that has symptoms like me?
    Thanks alot.

    Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
    NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.

    #457764
    Maz
    Keymaster

    Eagle, that is a great idea to ask Dr. O. if he has a colleague near you with the same treatment philosophy. If not and you can’t make the trip to see Dr. O., then if you have an open local doc, let me know and I’ll pass you Dr. S’s contact info for your doc to consult with him.

    Glad you found the ReA blogs of help – Katherine is on the foundation board and wrote, “The Infection Connection,” an encyclopedic volume with much good info, if you like to read and get educated about this stuff.

    Where can I find more info about AP protocols?

    Check out the FAQs, link at top of page for info on AP and also the Resources tab, which contains the doctor packets you could print for a local doc who might help, plus the core book by Henry Scammell, The New Arthritis Breakthrough, which can be downloaded to a digital reader from Amazon in English.

    Can I start AP therapy on my own?

    In some countries around the world, people can buy antibiotics over-the-counter at pharmacies. However, it’s not recommended, because it’s quite important to get a doc to monitor your bloods and ensure you’re okay, as you go.

    Do I need regular blood checks?

    Yes, at least every few months, to check CBC and a CMP with liver/pancreatic enzymes, plus any inflammation (CRP and SED rate) and disease markers that may be showing positive at baseline. It can be pretty heartening to see things improving over time.

    My last question is about supplements? Are there any other supplements that helps for inflammation and pain of reactive arthritis.

    Yes, people take a variety of supps to help with detox (which can help to get rid of free-radicals fueling inflammation)….pretty much anything which promotes glutathione, which is the body’s master detoxification antioxidant, produced in a healthy liver and rich in the lungs, but usually deficient in the chronically ill. Things like n-acetylcysteine (NAC), curcumin, Vit C, non-denatured whey protein, and glutathione IV pushes, if you can get these in your country. Bovine colostrum is also pretty amazing for gut healing and reducing inflammation. Working on gut health can be critical for some people, ensuring a clean diet, without gluten, simple sugars, dairy…and, for folks with reactive arthritides, starch can be a very big player, because some gut bugs (e.g. klebsiella pneumoniae) feed off starches in the diet. There are so many supps that people find that help, so perhaps others will offer their insights for you, too. CBD oil is legal in the US and some people find this helps a lot with pain, too. A supp similar to aspirin is called, “white willow bark,” which can take a month or so to kick in, but it is safer for long-term use than aspirin. If you have herbalists near you, you can probably get help from a good one in terms of finding an effective herbal for you. It can take some time to figure out what helps and what doesn’t.

    do you know any other friends in the forum that has symptoms like me?

    If you type “reactive arthritis” in the search box at the top of the forum, you will find many past posts coming up about it from guys suffering similarly. When you find a post that describes your situation or if you just want to contact that person, click on their User ID and it will take you to their forum profile where you have the option to private message that person. They will receive an automated notification of the message from you, so hopefully you’ll find someone that way.

    Have you seen the J.D. Carter research yet? He’s a Florida rheumatologist who studied ReA and the chlamydias (c. pneumoniae and c. trachomatis) and ran studies on combination oral antibiotic protocols to treat it with a good amount of success. Trials are limited by study time-frames, so a 6 month study or even a year only provides a partial picture of long-term outcomes, but nevertheless they provide good insight into which antibiotics are believed to work for ReA. In fact, you might want to get some infection screening ahead of beginning your treatment.

    https://www.ncbi.nlm.nih.gov/pubmed/21853013

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3155888/

    See abx Carter used in this study, as follows:

    1) doxycycline and rifampin
    2) azithromycin and rifampin

    Check out antibiotic protocols similar to the above study and that have a focus on the chlamydia infections are found at http://www.cpnhelp.org:
    http://cpnhelp.org/treatment_protocols

    https://www.ncbi.nlm.nih.gov/pubmed/20445454

    Thought this Tunisian study was pretty amazing as they actually analyzed synovial fluid in joints for various bacteria!

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2453759/

    Hope the above helps, Eagle. Let us know how you get on!

    #457771
    PhilC
    Participant

    Hi,

    Also I am allergetic to tetracycline family of antibiotics.

    How did you determine or learn that you are allergic to tetracycline antibiotics?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #457773
    eagle26
    Participant

    Hi Phil. When I was using them I had difficulties with breathing and swallowing. Also there was swelling in my throat a bit and I went to ER. Doc told me to never use them again.
    With sulfasalazine I have all over pain and flu after one week use.

    Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
    NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.

    #457779
    Maz
    Keymaster

    With sulfasalazine I have all over pain and flu after one week use.

    Sulphasalizine also has some anti-microbial effects – from your description of symptoms after one week, that is the classic timeframe for herxing (toxins released from dying bugs causing histamine reaction – Dr. Brown called it “bacterial hypersensitivity”). This also occurs with other antibiotics and is par for the course, if the antibiotics are doing their job. This is why learning how to detox can be so valuable – see reply just above Phil’s.

    PS. Before antibiotics were discovered, such as penicillin and tetracycline, sulpha-based antibiotics were used to treat infections.

    #457780
    eagle26
    Participant

    Hey Maz I did not know it but I do not like the way how I feel with sulfa. Headache and fever was another reason. Yeah I must learn about detoxing.
    I feel my drug is macrolides. I was really feeling good with them and also it was a coincidence. A doc gave it to me for a throat infection. I discovered that it was good for my pain and urological symptoms too.
    By the way I sent a mail to the Doc “O” and waiting for the reply. Thanks for all.

    Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
    NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.

    #457793
    Maz
    Keymaster

    Hey Maz I did not know it but I do not like the way how I feel with sulfa. Headache and fever was another reason. Yeah I must learn about detoxing.
    I feel my drug is macrolides. I was really feeling good with them and also it was a coincidence. A doc gave it to me for a throat infection. I discovered that it was good for my pain and urological symptoms too.
    By the way I sent a mail to the Doc “O” and waiting for the reply. Thanks for all.

    You might do really well on Dr. Carter’s antibiotic protocol (study above) then, Eagle, using azithromycin and rifampin. The purpose of using a combination protocol is to ensure that all the various pleomorphic forms of the offending bug are targeted and to help prevent resistance issues. It’s worth asking about this protocol, as you do so well with macrolides. Macrolides that seem to help folks are clarithromycin, azithromycin, and, in Europe, roxithromycin (unavailable in the US). Whatever works, right?

    Yes, please do read up on the herxheimer reaction, because flu-like symptoms, including headache, fever, aching muscle and joints, as well as a few other new things, are pretty common die-off symptoms. It’s likely why the anti-histamines are helping you, as they help to reduce the histamine reactions to the circulating toxins from die-off. Try to also read the “Hypersensitivity” transcript of a talk Dr. Brown gave, because it includes the rationale for using an anti-histamine. Even though the article is directed to RA patients, the same is true for anyone going through a “herx”:

    https://www.roadback.org/resources/journal-articles/guidelines-for-infectious-hypersensitivity-approach-to-the-treatment-of-rheumatoid-arthritis/

    I’m just letting you know this, because it’s possible you will experience the same or similar herx-like reaction from using antibiotic therapy. 😉 See FAQ #20 – click here: “After Starting AP“, because it describes pretty much what you shared.

    A Jarisch-Herxheimer reaction is taken as a good sign the antimicrobials are working. Experienced docs like to see a good herx, as it means the medication is doing its job, but the goal is to keep herxing to a tolerable level to “kill the bugs, not the patient.” Also, important to be aware that this is a long-term therapy and there are rarely any overnight miracles. Treatment continues until all symptoms and abnormal labs normalize and some folks prefer to remain on a maintenance dose for life to avoid relapse.

    #457876
    eagle26
    Participant

    No reply from the doc “O”. I think I will follow the second suggestion. I may get prescribed clarityromisin . I will try this week from my urologist. And also ask if he will do the blood checking too.
    I will postpone the combination therapy till I find a proper local doc or in am another close city who believes this therapy. Thanks everyone
    Ps I added propolis and royal jelly to my list too. Sometimes using aspirin c with vitamin C. I firmly believe that krill oil is doing its job about inflammation.

    Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
    NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.

    #457880
    worldofme
    Participant

    You should read my story. Sane thing as your 3 years later with countless abx nothing. My ReA progress to spondylitis. Yours will too if not control.

    Listen, one thing I wish I would have done earlier is send a semen sample bedford research foundation in Boston for them to run a PCR test.

    There is definitely a none culture bacteria involve. Don’t listen to doc 99% have no clue how to treat this.

    I live in US and I’ve been to major clinics and they still don’t have clue. They will treat you with rheumatic drugs not abx.

    I would suggest bedford lab for your semen testing using pcr before starting any abx.

    What abx have you try so far?

    #457881
    worldofme
    Participant

    Fyi…rifampin and azithro / doxy is not to be take easy…I did that protocol and got sinus tachycardia for 5 days so I would hold on rifampin for last. Besides his combo only works if you chlamydia induce ReA.

    You need to send email to Ryan at bedford and ask him to send you prostate kit.

    Do THIS before starting abx. If PCR is negative I would drop the whole bacterial thing.

    #457882
    worldofme
    Participant

    Sorry and another sample to

    United mediaCal lab for semen broth testing. If both of this is negative then take tnf blocker.

    I am pretty positive one of these test will be positive for hard to culture bacteria.

    #457883
    eagle26
    Participant

    Hi wordofme thanks for suggestions
    However I think I am not able to send samples to USA. Neither have the monetary situation nor the will.
    Countless tests up to now , seMen culture, urine culture, stds and pcr chlamydia were negative.
    Even if there is no bacteria , I consider AP therapy. Other drugs dmards and tnf are far more dangerous and I do not want them.
    I want to at least try not the combination but single macrolide.
    Hope the disease will not become serious for us.

    Reactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
    NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.

Viewing 15 posts - 1 through 15 (of 40 total)

You must be logged in to reply to this topic.