Anyone Undifferentiated Spondyloarthropathy AP Experience!?

[mirdell]

I have been diagnosed with “Undifferentiated Spondyloarthropathy”. I know that there have recently been studies that have shown combination antibiotic to be an effective treatment for uSpa, but I am curious to know if anyone has experienced positive effects with AP and this condition… How about other spondyloarthropathy patients!? Thank you in advance for your replies!

[lynnie_sydney]

mirdell – welcome to the Road Back Forum, though sorry that you’ve had to seek us out. Spondyloarthropathy is indicated as responsive to AP treatment. Have you read The New Arthritis Breakthrough by Henry Scammell? It contains Dr Brown’s original book The Road Back. We recommend this book as a really good place to start and it’s available through amazon. There is also good information in the Education section of our main site – click anywhere on the blue bar in the heading above to access it. I’m sure others will chime in, but you could also try using the search function on the Forum. Type in some terms such as Spondyloarthropathy, Ankylosing Spondylitis, AS – and all past posts containing the term will come up. Welcome again. Lynnie .

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)

[mirdell]

Thank you for the welcome message. Yes I have read The New Arthritis Breakthrough, but I havent found anyone with this specific condition, even when searching for key words through all posts on this forum. Ill keep looking though and anyone else out there that has uSpa give me a shout! Thanks again.

[lynnie_sydney]

mirdell – if you look at page 62 of The New Arthritis Breakthrough, you will see a discussion on ‘Lumpers’ and ‘Splitters’. Dr Brown was a ‘lumper’ in that he tended to’ group all people with inflammatory arthritis together’ – and this particularly applied to those with rheumatoid arthritis and the spondyloarthopathy group. From his perspective ‘ they seemed to respond unifornmly to his antibiotic therapy’ (pg 62 The New Arthritis Breakthrough). Prior to his death in 2005, Henry Scammell also posted on the Forum about this:

Posted by Henry Scammell on Sun – Aug 14 – 5:40pm: 2005
Why Dr Brown was a Lumper
Tom Brown was a lumper, not because of the politics of the time or arbitrarily, but solely because he saw thousands of patients getting better on antibiotic therapy and he figured they were all improving for the same set of reasons. But the recent exchange on this topic contains a couple of misaprehensions. The concept of lumpers/splitters is particular to RA, and does not include the other connective tissue diseases such as lupus, fibromyalgia, scleroderma, etc. – although certainly Brown recognized that they all had a lot in common, especially their responsiveness to antibiotic therapy. Lumpers use the term rheumatoid arthritis generically to include all the inflammatory forms of arthritis (I think there are 106.) The rationale for this is simply that rheumatoid means inflammatory. Because Brown was virtually alone in using antibiotics for any of those forms of arthritis or for the other connective tissue diseases up to the time of his death, in those days whether a rheumatologist was a lumper or splitter had nothing to do with the AP or the infectious theory. In fact, lumpers and splitters alike held Brown, the theory and the treatment in low regard and often in contempt.
Today the question of lumpers vs splitters has become even more politicized because it has obvious implications for the infectious theory and, to a lesser extent, the efficacy of the AP. Some 17 years after Tom’s death, the theory remains unproven. More happily, the AP has been accepted for use in RA (splitter’s definition) by the USP and the Arthritis Foundation – although it has NOT been approved for most of the other 105 inflammatory forms of arthritis. So today more than ever,the distinction is a critical one. If your doctor is a lumper and he believes the USP or the Arthritis Foundation,chances are good that he’ll treat whatever form you have with minocycline (which was available in Tom Brown’s time, by the way, and which he used – we refered to it as tetracycline because that’s what it is.)
An apparent subsidiary to this issue is the JH reaction – doctors who doubt or reject the infectious theory obviously don’t believe their RA patients ever herx on the AP. Conversely, most doctors who do believe in the theory believe they can tell the difference between the JH reaction and a conventional flare. As for scleroderma, it’s not inflammatory, so obviously the herx, if there is one, would not present in the same way as in RA. I don’t know how a scleroderma patient would know whether he has ever had a JH reaction, or how he could be sure that he has not.
Some years ago, about halfway between the time we wrote The Road Back and today, I updated our effort with The New Arthritis Breakthrough. As anyone who has read that book knows, it owes much to the helpfulness, insights, courage and cooperation of David Trentham . When we sat down to discuss that update, David commented that it was unusual that in the several years since Tom’s death, not a single statement in The Road Back had been proven wrong or false. We both knew we had leagues to go before the day when it could all be proven true.
One last thought on the recent exchange: I don’t know how many of the RBF board believe in the JH reaction, and although I assume it is most or all of them, I could care less. As a loyalty test for supporters of the infectious theory, it’s meaningless.
Okay – yet another last thought:it’s wonderful that RBF has so many good people who are willing to share their knowledge and experience and love of their fellow man, especially in the forum of this lively bulletin board. We now get something like 45 MILLION page hits a year on this site,and I’m certain most of those visitors look in on this running dialogue. Many, many thanks for all you do – whether you agree with each other or not. Keep on sharing. And keep on loving.

mirdell – I do hope that you find someone with your diagnosis to talk with as it does help. If you haven’t already, you could also try posting on the Forum at http://www.rheumatic.org. My reason for posting the above is perhaps to offer you some comfort that Dr Brown believed all forms of arthritis and spondyloarthropathy respond to antibiotic therapy. Lynnie

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)

[DragonSlayer]

Hi, mirdell:

I don’t really understand the term “undifferentiated;” to me that just means the physicians either do not really know how do a proper differential diagnosis, or do not (yet) have the proper tools.

Anyone with this designation should always assume that it means Ankylosing Spondylitis. Obfuscating extra diagnoses of psoriasis or lumbar disc prolapse and osteoarthritis are all potential features (of the 200+) or sequelae associated with AS.

Just because You do not show “X-ray changes” in SI Joint and are also HLA B27 negative, does not mean that You do not have AS; albeit “Early AS” or “Pre-AS” would be more accurate and acceptable: KRA (Klebsiella-Reactive Arthritis) would be the best description, however; Spondylosis and osteoarthritis are intermediate or end-points of the result of untreated disease process.

When using antibiotics, I caution especially in this case: Bactericidal agents rapidly select-out resistive colonies and “substrate modulation” is the most important way to avoid this. Our nemesis germ, Klebsiella pneumoniae, greatly increases its numbers on a substrate of starches. The NSD (No Starch Diet) limits their unbridled passion/procreation to the extent that they can be better controlled using a combination of antibiotics.

I have successfully controlled my symptoms for over 11 years using diet plus a variety of antibiotics and my suggestion is to find a RBF physician who will work with You using not only Dr. Brown’s suggestions (mycoplasma) but Professor Ebringer’s (Klebsiella), also.

Agents I have used include especially Flagyl, Cipro, Maxaquin, Levaquin, tetracycline, doxycycline, Minocin, cephalexin, and I also tried Tanalbit and other “natural” antibiotics like GSE.

I can send to You my own “AP for AS,” to use as a very general guideline with a good physician to help You decide what is best in Your own case.

HEALTH,
John

[APbeliever]

John(DragonSlayer) can you please send me the info on your “AP for AS” also? I believe I have the same problem too and I am thinking of either tweaking my medications or take MTX along with AP. The combo AP and MTX did wonders for me when I started two years ago (a complete remission of disease symptoms during that time). However, AP and LDN has not completely put my disease in remission so far with results getting worst now.

[Pablio]

Hi Mirdell,
I just wanted to say hello and let you know I have a similar diagnosis (see my sig below). I’ve read the books, watched the video and did a lot of other reading. I also so much appreciated the Dragonslayers response to you and have also written him for a copy of his “AP for AS” general guidelines and will use those to inform future discussions with all my team of docs.

You are right that there is not a lot on this forum for the seronegatives and “undifferentiated” types like us. I realize we’re “lumped” in with all the others, and Dragonslayer and Lynnie really helped clarify that for me. So I just didn’t want you to feel alone.

This week, after debating this for a long time, I took the plunge and went to see one of the respected AP physicians in Lufkin, TX. She reviewed my workups from previous Rheumys, listened to me and then suggested I stop the MTX and start Minocin (brand). She also suggested that I have Celiac Syndrome and needed to become gluten free ASAP. I was a little surprised by that, since no one has ever suggested that before, but I’m trusting this physician really knows what she is talking about. Some pretty big changes happening here! So here I go. Send me a pvt message if you’d like with any questions or whatever.

Thank you again Mirdell for asking your question, and to Lynnie and Dragonslayer for their inputs.
Paul

[crowchez]

I am also completely seronegative, except that HLA B27 is present. That makes it AS regardless. My AP rheumy’s best guess is psoriatic arthritis although I have no skin or nail involvement. Daily doxycycline made me much worse then much better as I started pulsing it instead. I’m now on minocycline in the morning & doxy in the evening MWF. Gluten free, low starch, detoxing, yada yada. 🙂

[Pablio]

thanks Crowchez for your input. I guess maybe there are a few more seronegative “undifferentiated” types out there than I thought. I did not have the HLA B27. And my Rheumy has also mentioned Psoriatic Arthritis as well, tho like you, I have no skin or nail involvement. So for now my diagnosis remains what it is below in my sig.

RE: the celiac. I have some other Dr. friends who watch out for me, and they really encouraged me to get tested for Celiac. So today, I went in and my PCP is going to run the comprehensive celiac panel. I know those tests still miss a lot of people, but if it does come back positive, at least I will be more committed to gluten free and not guessing. In the meantime, I’ll try to stay gluten free ( this is my second day) and see how that goes. Its just such a lifestyle change and I guess I’m fighting it a little. Just curious…were you ever on MTX and/or on MTX and ABX at the same time?

I also started the Doxycycline 100mg po bid yesterday and will do that until I get the Minocin from Canada. I will take that at the same dose. BTW, the Minocin was going to cost me $600 (insc penalty for not using the generic) here in the USA and I’m able to get it for $155 in Canada. My intention is to do the ABX and the MTX for now. I see the Rheumy next month and my plan is to confess I’ve started the Mino and ask for her continuing support. If the ABX’s kick in…maybe we can start backing off the MTX. That’s my hope. The reason she was so insistive about the MTX was that she wanted to stop any further “erosions”. Then she said she would consider ABX…that’s a lot for a Rheumy to say! So I’m hoping she’ll be open to the fact that I went ahead and added the abx. I had even emailed Dr. S in Ida Grove and got an email back from him stating that ABX could be started even with a patient on MTX, and that over time, when the abx started working, you could back off the MTX. I will show my Rheumy that email next month. Dr. S even offered to consult with her (the Rheumy) on it if she was open to it. Just as a point of reference however, Dr. K in Lufkin wanted me to stop the MTX now…and all at once was her preference. So I guess there is still no real consensus on that.

Anyway, thanks for joining the conversation and for your info. I just wanted to give a few more details on my situation in case it helps anyone else.

Pablio

[crowchez]

I hear ya on the lifestyle change going gluten-free. We live in such a glutened world. We’ve really messed up all our food if you start paying attention. I just noticed my herbal ginger tea (Lipton’s) has soy lecithin in it! 😮 Blech. Anyway I used that opportunity to go low carb not just gluten free. I did it when I was pretty sick & scared so I was distracted when going through the worst of the adjustment. I see you’re a vegetarian but I came across http://www.marksdailyapple.com/definitive-guide-primal-blueprint/. (He sells stuff but most of the info is free on his site.) Very healthy outlook on life starting with how we fuel our bodies. Also gave me something positive to aim for. I have never cooked so much or eaten so well in all my life! 😆

I’ve never been on MTX but 2 rheumy’s have suggested sulfasalazine, even my AP rheumy. I’ve been very lucky that I got started early & responded well. I hope you’re able to just use abx soon. It does take a while but when things started getting better, progress was ever so slow. Just the tiniest of improvements. But that was enough because I was enmeshed in the archives here & it was so encouraging to read other people’s stories. (If you search the forums for seronegative, you’ll get some hits. At least we can’t get hung up on numbers since we don’t have any. 😛 )

Deirdre

[Maz]

@crowchez wrote:

At least we can’t get hung up on numbers since we don’t have any. 😛 )

Deirdre…I got such a giggle at your last comment – oh, the irony…but how true for you ‘lucky’ seroneg types! 😆

[crowchez]

Yep, lucky, that’s the ticket! 😆 They just keep running tests & everything is normal. Interesting to have a condition that there’s no test for.

I did have a question for John (Dragonslayer) about using combo abx – is it necessary or is mino/doxy enough? Since there is such a gut connection in AS & some abx target the gut (like flagyl), would staying only on tetras not get the job done? It seems to be working for me but I always think ahead & want to be ready to pounce if I need to.

[DragonSlayer]

Hi, crowchez:

Over many years, the extra-intestinal colonization by Klebsiella pneumoniae will create a constant flux of antigenic sequences (dead, separating bacteria) that will maintain an undesirable level of disease activity–enough to promote osteoporosis if not any obvious fusion.

The bacteriostatic agents are very good in keeping more colonies from forming, but they do not “search-and-destroy,” whereas bactericidals will help eliminate the established colonies.

But it is a matter of personal choice, of course; once the antibacterial concept is proven and if You are comfortable on the tetracyclines, I agree that sometimes it is better to not stir things up–these drugs are very powerful and really bad stuff like colitis can happen. I made myself temporarily worse several times and especially once at the wrong time–and I had to eliminate colitis in less than two weeks (it takes some fasting to accomplish this).

And since You do not “indicate,” disease activity is really very subjective, but using the stronger antibiotics with any AS-family disease, it is extra-important to be ultra-strict with diet (especially starches including milk sugars and caramel, etc) so that they are not going to select-out resistive strains to form new colonies.

The reason for the Flagyl is more for cases where the Cipro is used because this can help reduce any tendency for colitis and especially in AS just in case there are any unknown issues with previous potential giardiasis (the cysts of this protista are hardy and quite persistent, and Flagyl can eliminate these).

Good to be extra-cautious and consult good RBF physicians in any event,

HEALTH,
John

[crowchez]

Thanks so much John. That makes things much clearer. Like no more dark chocolate for me. 🙄 I always knew my sweet tooth would do me in, so time to redouble my efforts in the kitchen. 😆 I’ll bring the combo issue up with my AP doc next time I’m there. He’s mentioned sulfasalazine but not another abx.

(Here is something I found interesting: I’ve been eating eggs for breakfast for the past year – love them, love my breakfast. I’ve been having some pain return & then stomach issues narrowed down to after breakfast time. Eliminating cream in my tea didn’t fix it but stopping the eggs did. And lo & behold, my other pains have slipped away as well. Now what to have for breakfast…..)

[vera]

Hi Crowchez,
I, too, have psoriatic arthritis, and have been eating an egg every morning for breakfast. Not sure that it agrees with me either, as I definitely deal with pain. If you figure out what to replace it with, I’d sure love to know. I already eat meat 2x/day, and really enjoyed the egg!

Lori

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