Home Forums General Discussion Axial Spondyloarthropathy

This topic contains 14 replies, has 6 voices, and was last updated by  bsliu17 2 weeks, 5 days ago.

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  • #456304
    Jrod
    Participant

    First time poster here looking for some advice or suggestions on what my next step should be. Ill summarize my current situation – pain and inflammation in si joint, lower back, and hip that came on right around chlamydia trachomatis infection 2.5 years ago, hla-b27 negative, normal esr and c reactive protein, only results of interest were high calcium low vit d and high levels of s. Cerevisiae igg and iga.

    Ive been seeing an ap doc in nyc for the past few months but hes pretty much impossible to communicate with when im not in the exam room. He has me on doxycycline 100mg pulsed m-w-f since march and sulfasalazine 500mg daily since may but i still feel awful.

    Anyone have thoughts on the combo abx (rifampin + doxy) treatment model that dr john carter used in his study? I want to try it because i think i fit the bill but im not sure if my doc will be on board.

    Im just trying to get the inflammation under control before it does irreversible damage. I came off humira in february to give other treatment methods a shot and since then i have increased pain, stiffness, popping, and cracking in my si joint area.

    ReA / Axial spondyloarthropathy after c. trachomatis infection. Doxy 100mg M-W-F, Sulfasalazine 500mg daily, Aleve as needed, Autoimmune protocol / no starch diet.

    #456311
    worldofme
    Participant

    Read my post, my arthritis axial started like yours. No infection found and chlamydia negative. How did they find chlamydia in you?

    You need to get your doc on doxy plus rifampin for 6 months.

    Humira helped in my case, you might want to consider few shots to calm things down.

    My rehumi would tell you that you have intracellular chlamydia. You need to take doxy plus rifampin.

    At least in your case they know it’s chlamydia. Good luck! This disease sucks.

    #456314
    Jrod
    Participant

    Yea this disease does really suck, i cant even stand up for more than 15 minutes without agonizing pain. I started seeing someone new (who unknowingly infected me) and the back pain started 3-4 weeks later. I didnt have any issues besides the si and lower back pain for about 3 months though until i started having all the typical issues associated with c. trachomatis. The infection was cleared up with the usual antibiotic treatment which also took care of the urinary symptoms but the back pain is still there as strong as ever.

    It blows my mind that so many doctors (ive lost count how many ive consulted) knew my timeline and history of c trachomatis infection and chronic lower back pain and didnt see any connection. I knew something was wrong with my body and had a suspicion that it was related to the urinary tract infection but it took me a long time to realize i needed to do my own research and find the connection myself.

    I have an appointment coming up next week and im going to push for a more aggressive treatment. Thanks for responding worldofme i hope you find relief.

    ReA / Axial spondyloarthropathy after c. trachomatis infection. Doxy 100mg M-W-F, Sulfasalazine 500mg daily, Aleve as needed, Autoimmune protocol / no starch diet.

    #456315
    worldofme
    Participant

    You sound just like me.

    I’m sure by now you have realized most doc are useless when it comes to reactive arthritis. The reason they couldn’t make an easy connection is because ReA is truly a very rare disease. I think the stats is every 1000 case only 30 folks get ReA. From the 30 case of ReA only 15% gets spondalyoarthrophy.

    What type of doc do you see? A rehumi would have easily diagnosis you as ReA is bread and butter for them.

    If I were you and since you knew your bug Ct I would ask for 7 days of Flagyl to ensure there aren’t any parasite or other bug attached to Ct.

    Also, the reason your still having axial pain is because sulfa doesn’t work for axial arthritis, only biologics.

    I would stop sulfa if you have no peripheral arthritis. Resume Humira and Abx for long time.

    Then easy up on humira.

    My rehumi said long enough shot of humira can Def put things into remission.

    Did your doc diagnosis you withave

    Nonradiographic axial spondalyoarthrophy?

    That is the new and hot topic amongst rehumi these days.

    #456323
    MLTelfer
    Participant

    Indomethicin and Tolmetin are two NSAIDS that have track records of being more effective than others for axial disease. You might consider trying them, and I think they are on the Wal-Mart $4 prescription list.

    #456324
    Maz
    Keymaster

    Jrod, have you seen the CPN Help Protocols? These antibiotic protocols are designed specifically for chlamydia-induced reactive arthritides. The Carter studies came after the Vanderbilt ones and do use the same classes of antibiotics, but studies are limited by time constraints and don’t include other variables that might support the treatment, such as specific dietary help and supplements (like NAC).

    http://www.cpnhelp.org/treatment_protocols

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #456325
    Jrod
    Participant

    Thanks MLTelfer ill look into indomethacin and tolmetin.

    Maz, before posting here i read as many posts as i could that were discussing spondy, CReA, and AS and i did come across the cpn protocols. Ill familiarize myself more with the info before my appointment on wednesday.

    What are your thoughts on the info out there that says antibiotic use could put the chlamydia into a more persistent state thus making it harder to get rid of? Im definitley going to push for long term combo abx therapy as i truly believe its my only shot at recovery but this is something that concerns me a little.

    ReA / Axial spondyloarthropathy after c. trachomatis infection. Doxy 100mg M-W-F, Sulfasalazine 500mg daily, Aleve as needed, Autoimmune protocol / no starch diet.

    #456326
    Maz
    Keymaster

    Hi Jrod,

    Do you have any specific literature where you found info about chlamydia persistence and antibiotics? Persistence is not uncommon with many bugs, including cell wall deficient bugs, like mycoplasma, and Lyme disease, which is notorious for altering its forms (spiral cell-walled, cell wall deficient spheroplasts, dormant cystic forms, blebs, etc) in order to evade abx attack. Some bugs are equipped with efflux pumps to push abx out. So, treating many of these chronic infections and slowly reducing tissue reactivity to bug toxins is quite a journey.

    No doubt the CPnhelp experts would be able to provide you with reliable sources of research info for the rationale of their protocols. To my knowledge, the purpose of using multiple, complimentary antibiotics from different classes is for the purpose of targeting chlamydia in its variant forms (Including cryptic forms). Treating with just one antimicrobial and/or improper dosing schedules can be a big mistake for some infections, as it may just push them into resistant forms. Undoubtedly, one of those forms is biofilm and the use of NAC, EDTA and other biofilm busters can be helpful for this purpose. The nitroimadazoles, like Tinidazole and Flagyl also have some biofilm busting properties.

    Thing is, while abx therapies can and do put people into remission, it needs to be viewed as a long term therapy, with no overnight miracles, and sometimes for life. In reactive arthritides, focus on supportive measures can make a huge difference, like diet and excluding starches, night shades, gluten, sugars and dairy, while also ensuring to repopulate the gut with adequate probiotics.

    Clearly, all treatments for rheumatic disease bear some risks, including abx therapy and so it’s quite important to be doing exactly what you’re doing….becoming your own strongest health advocate, getting educated about risk/benefits of different treatments and making informed decisions about these. It sounds like you’re started on a good track, Jrod, with all this and do hope it won’t be long till you’re on your road back to health.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #456365
    Jrod
    Participant

    Hey Maz,

    I think i read about chlamydia persistence w abx therapy in one of dr carters studies but im pretty sure he was referring to persistence to only using one antibiotic at a time. Ive been on doxy since march, felt a little better initially but started feeling cruddy again in may and im still not feeling great. Do you think ive been on doxy too long by itself?

    Im seeing my doc tomorrow and i want to try to get another antibiotic added because i feel like im tolerating the doxy well and from everything ive read in my situation thats the route that needs to be taken. Hopefully i havent pushed the bugs into a more persistent state by being on doxy alone for 4-5 months.

    ReA / Axial spondyloarthropathy after c. trachomatis infection. Doxy 100mg M-W-F, Sulfasalazine 500mg daily, Aleve as needed, Autoimmune protocol / no starch diet.

    #456370
    Maz
    Keymaster

    Hi Jrod,

    Hey Maz,

    I think i read about chlamydia persistence w abx therapy in one of dr carters studies but im pretty sure he was referring to persistence to only using one antibiotic at a time.

    Yes, could be you’re right about the connection to monotherapy with chlamydia and persistence, bearing in mind that a chronic form of chlamydia has been pretty well documented and likely why Carter ran his combination therapy study. Persistence isn’t necessarily resistance in this light. Some bugs are just trickier to treat. For instance, there was a Science Daily article (can’t find link right now) that talked about the fact that strep is not resistant to penicillins, yet some kids are needing several rounds of different antibiotics to get rid of it. There was no explanation for this in the article, but one inference might be that strep is holing up in biofilm colony and being protected in that biofilm by other bugs. So, the bug itself isn’t resistant…it’s just cleverly and successfully hiding, leading to persistence.

    Ive been on doxy since march, felt a little better initially but started feeling cruddy again in may and im still not feeling great. Do you think ive been on doxy too long by itself?

    I don’t know, but it’s rarely a straight line to remission and herxing can occur any time in the first few months. Some bugs are more susceptible to abx at certain points in their life cycles, too, so die-off can occur in rounds. Also, worth bearing in mind that doxy isn’t immune-suppressive so flares in disease can and do occur all the way to remission, but over time should be decreasing in frequency, intensity and duration. It’s often described as a 3 step forward and 2 step back dance…in the book, Dr. Brown says that patients rarely return to their worst point when on AP. Some patients do just fine on monotherapy and, usually, by the 6-8 month mark if improvement has been unimpressive and labs haven’t changed much, then it’s definitely time to go back to the drawing board and think about changing things up. You’re almost at that point, so thinking about adding a secondary abx with your doc isn’t a bad idea. You might want to follow one of the CPn Help protocols.

    Im seeing my doc tomorrow and i want to try to get another antibiotic added because i feel like im tolerating the doxy well and from everything ive read in my situation thats the route that needs to be taken. Hopefully i havent pushed the bugs into a more persistent state by being on doxy alone for 4-5 months.

    Have you tried minocycline yet? If not, you might also consider changing from doxy to mino, but if this change is made, then waiting for a bit before adding other abx might be smart, as mino tends to have better tissue penetration and may result in new rounds of herxing.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #456371
    Jrod
    Participant

    Thanks for the quick reply Maz. I forgot to mention that i was also put on sulfasalazine in May, right around when i started feelin bad again. My doc wanted me on it because of high levels of s. Cerevisiae igg and iga, which he said could be an indication of crohns or ulcerative colitis even though i dont have any of the symptoms (yet).

    He also tested for other genes closely allied w hla b27 (b7, b42, b22) and i was negative for those as well. His summary on my results read “Your tests for crohns/uc are still positive but your testing for b27 b42 and b22 are negative so we can not say for sure that you have an hla b27 or b27 like rheumatic disease. I would still consider using sulfa in view of your crohns/colitis tests being positive.”

    I guess im just confused because he initially said the s. Cerevisiae test wasnt the end all be all test for crohns and I also read somewhere that it is typical for people w the spondyloarthropathies to have elevated s. Cerevisiae without actually having crohns.

    I havent noticed any benefits of the sulfa (500mg daily) up to this point. Im not really sure if its worth being on because my doc may just be grasping at straws going off the elevated blood levels despite any actual symptoms.

    And no i havent tried mino but this is something ill bring up with my doc and see what he says.

    ReA / Axial spondyloarthropathy after c. trachomatis infection. Doxy 100mg M-W-F, Sulfasalazine 500mg daily, Aleve as needed, Autoimmune protocol / no starch diet.

    #456372
    Maz
    Keymaster

    Jrod, if you are considering stopping sulphasalzine, would suggest just doing one thing at a time. It might be helping more than you know…although it is a DMARD with some immune suppressive effects, it also has some anti microbial actions. So, tapering from it first might be a reasonable way to go or staying on it and adding a second abx (ensuring no interactions), getting stabilized and then tapering from it. Doing too much at once can confuse the picture and would be hard to tell what is drug rebound or herxing. Slow and steady wins the race as there are no overnight sensations with any of this and care needs to be taken not to rock an already unstable boat.

    Were you tested for any other pathogens in your gut? If not, you might like to check out and even consider sending a stool sample off to somewhere like the American Gut project, as they perform comprehensive gut microbial analysis and it might help narrow down your search. Genova Diagnostics may also have a panel that makes sense you.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #456373
    Jrod
    Participant

    Youre totally right Maz, gotta do one thing at a time or else how will i truly know whats helping or hurting.

    I havent been tested for other gut pathogens but that is definitely something that i will consider doing. Since all of this started ive had throbbing in my abdominal area and it feels like my heart is beating in my stomach. My first rheumy thought it mightve been my aorta but i had 2 different cardiologists clear me. It wasnt until those s. Cerevisiae results came back that i realized that the throbbing may be an issue with my gut.

    ReA / Axial spondyloarthropathy after c. trachomatis infection. Doxy 100mg M-W-F, Sulfasalazine 500mg daily, Aleve as needed, Autoimmune protocol / no starch diet.

    #457169
    PhilC
    Participant

    This is just an FYI post for anyone who happens to stumble upon this discussion.

    Indomethicin and Tolmetin are two NSAIDS that have track records of being more effective than others for axial disease.

    Etodolac is a safer NSAID that is comparable to naproxen and indomethacin for the treatment of ankylosing spondylitis.

    See:

    An overview of the efficacy of etodolac in arthritic disorders.
    https://www.ncbi.nlm.nih.gov/pubmed/2146130

    Etodolac. A reappraisal of its pharmacology and therapeutic use in rheumatic diseases and pain states.
    https://www.ncbi.nlm.nih.gov/pubmed/1717225

    NSAID study finds nabumetone and etodolac top safety list
    Geriatrics;Sep97, Vol. 52 Issue 9, p95
    http://connection.ebscohost.com/c/articles/9711142012/nsaid-study-finds-nabumetone-etodolac-top-safety-list

    Etodolac ER (Lodine XL) — the extended release version — is recommended for its superior gastrointestinal tolerability.

    Phil

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

    #461122
    bsliu17
    Participant

    Hi Jrod,

    Any updates on your condition and your trial of CAP for chlamydia ReA? I too have Chlamydia-induced ReA and would like to know your experience in dealing with it.

    Thanks!

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