HLA-B27 Associated ReA

[Anonymous]

Hi everyone, this is my first post here. I’ve bee having pain mainly in my neck and back for the last 8 months or so. But just in the last month has a doctor actually said that I have reactive arthritis. Initially I was told I probably had ankylosing spondylitis. It’s been a real struggle to get good treatment for this even though I’ve probably seen over 30 doctors now.

Anyway I’m very happy to have found this site, it gives me a little hope to see that there could be another solution out there aside from anti-tnfs and DMARDs. Since I’m new to all of this though, I would like to know if there is anyone else on these forums who has had reactive arthritis, and particulaly ReA with axial symptoms. I’d really like to know what you have been doing for treatment and if anything has helped you.

Thank you for reading this, I’m hoping to learn a lot from you guys.

[lynnie_sydney]

Welcome to the Road Back Forum Mike. You may want to check out the posts of DragonSlayer (John) who will probably see your post and chime in anyway. You might also want to use the search box at the top of the front page to General Discussion and type in search term such as ‘HLA-B27’ and ‘ReA’ . Alot of past discussion on these will come up for you to look through.

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)

[Anonymous]

Hey lynnie!

You know I think I’ve actually talked to John though another forum already. So I know that guy is a fountain of knowledge. I was hoping to hear from other people who have had reactive arthritis though. I haven’t had the chance to hear the thoughts of many people who have tried an AP with this particular disease.

I’m sure once I have some free time I’ll be pouring over past threads though. I get the sense this community has some very good information circulating through it.

[Todd WI]

Hi,

If you haven’t stumbled across it yet you might want to do a bit of research (pubmed, google etc.) on Dr. Carter and his studies on reactive arthritis. Here’s one article:

http://www.arthritistoday.org/news/antibiotics-combination-reactive-arthritis058.php

Todd

[Anonymous]

@Todd WI wrote:

Hi,

If you haven’t stumbled across it yet you might want to do a bit of research (pubmed, google etc.) on Dr. Carter and his studies on reactive arthritis. Here’s one article:

http://www.arthritistoday.org/news/antibiotics-combination-reactive-arthritis058.php

Todd

Hey Todd I’ve actually seen that article. While it does look promising, I don’t think I’ve ever had chlamydia, and it seems that treatment is only effective for chlamydia induced ReA.

[Todd WI]

Sorry Mike, I didn’t intend to imply you have or have had an STD. I meant only to point you to a researcher that appears to be having success with reactive arthritis.

[Trudi]

@Todd WI wrote:

Sorry Mike, I didn’t intend to imply you have or have had an STD. I meant only to point you to a researcher that appears to be having success with reactive arthritis.

There are non-STD clamydia infections which may also be a player in the reactive arthritis, but just not mentioned–
http://www.lymediseaseblog.com/you-could-have-chlamydia-pneumoniae/
It showed up for me and my doctor hastened to explain the difference :).
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Anonymous]

@Todd WI wrote:

Sorry Mike, I didn’t intend to imply you have or have had an STD. I meant only to point you to a researcher that appears to be having success with reactive arthritis.

Todd, of course I didn’t think you were implying I had an STD, and I do appreciate your response to my thread. I’m aware of pulmonary chlamydia as well, so I know saying chlamydia doesn’t always imply an STD.

I have had numerous blood tests though, and so far none has shown the existence of chlamydia in my blood. The only bacteria found thus far is one called Haemophilus Parainfluenzae. The past 2 and a half months I’ve actually been on augmentin to try to kill it off. And while I think it did help a little bit, in that my spasms were reduced and pain reduced a little (a very little bit–as if my flare had just calmed a little), I ended up with some gastrointestinal problems after the long term Augmentin and had to discontinue its use.

Right now I am taking Allicin pills as my primary antibiotic, but I will definitely be bringing up minocycline with my doctor. I was very lucky to find a LLMD who seems to be open to alternative treatments.

[Author]

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