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#465209 - 03/19/12 06:57 PM Can dialysis help in any way?
Alisvan Offline
New_Member

Registered: 03/14/12
Posts: 10
Loc: Mass, USA
I'm new to the forum, but was curious whether there has been any research done on dialysis treating AS? Given that it is our blood, could we wash it through or treat it through a process like that?

Gerry

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#465211 - 03/19/12 07:13 PM Re: Can dialysis help in any way? [Re: Alisvan]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
The main candidate for initial inflammation trigger in AS seems to be the gut. See research by Ebringer posted on this site. Some doctors are skeptical, but the skeptics have never discovered a more likely alternative, and other research has demonstrated the gut is able to trigger autoimmune arthritis:

http://www.sciencedaily.com/releases/2010/06/100617120716.htm

"One surprising finding was that bacteria in the gut could influence the development of an autoimmune disease affecting tissues distant from the gut. Diseases such as irritable bowel syndrome have been linked to gut-residing bacteria, but this study is unique in showing the mechanism by which a bacterium in the gut can influence the development of an autoimmune response that ends in inflammation and pain in the joints."

Since it is not our blood that generates AS inflammation, even supposing you managed to temporarily wash it clean... new antibodies and inflammation markers would be produced and start circulating again.

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#465565 - 03/24/12 10:34 AM Re: Can dialysis help in any way? [Re: Alisvan]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 501
Loc: phoenix
No. Dialysis cleans blood of kidney toxins and has nothing to do with AS or immunity for that matter.
Besides dialysis by itself will slowly kill you.

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#465575 - 03/24/12 01:46 PM Re: Can dialysis help in any way? [Re: Alisvan]
mig Offline


Registered: 04/27/02
Posts: 12307
Loc: ON, Canada
Hi Finnari,.. I am curious why you said, "dialysis by itself will slowly kill you."?

My Mom has been on dialysis for approx. 10 yrs, due to failing kidney function, which is why I am interested. I'm aware of the many associated dangers... but why 'slowly'?

Thanks!
mig

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#465577 - 03/24/12 02:54 PM Re: Can dialysis help in any way? [Re: Alisvan]
Skywalker Offline
Journeyman_AS_Kicker

Registered: 04/02/11
Posts: 105
Loc: Cambridge ,Ontario, Canada
Ok misinformation just abounding here.

1) The reason dialysis is hard on you is the crap floating around in you till the next dialysis, not the dialysis itself. And if you were HLA b27+ you'd still be having that blood dialisis just filters waste from it, on top of that your bones would still make your blood with the surface antigen.

2) I have eaten no starch since December and for the last month have literally only ate spinach, apples and tuna all raw and alone. My MRI last week still showed a ton of Bone marrow edema so for me at least even with diet and TNF blockers something is a rye.



One question I have = has Ebringer ever had debates with other professionals in the field, if so I would love to see the back and forth on the subject. If it exist i cant find it.

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#465579 - 03/24/12 03:51 PM Re: Can dialysis help in any way? [Re: Alisvan]
mig Offline


Registered: 04/27/02
Posts: 12307
Loc: ON, Canada
I understand dialysis helps eliminate toxins from the blood and that's why it's a beneficial treatment for failing kidneys. By associated dangers, I was referring to the increased potential for blood clots and (port) infections. I wasn't asking re: AS.

Re: Ebringer's research - there have been research studies done by other professionals in the field, (one group in TO) that could not replicate the same results and came to an opposite conclusion regarding klebsiella. To my knowledge, there have not been medical trials to investigate the effectiveness of diet, other than Professor Ebringer's. Whether or not there has been an in-person debate I don't know (John might know)... but they are certainly all aware of each others research. smile

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#465580 - 03/24/12 04:13 PM Re: Can dialysis help in any way? [Re: Alisvan]
Skywalker Offline
Journeyman_AS_Kicker

Registered: 04/02/11
Posts: 105
Loc: Cambridge ,Ontario, Canada
It is bad; my good friend has 3 kidneys in him that don't work and a garden hose like thing into his arm for dialysis. He just survived c-deficial that he probably got at the treatment center.

I know they were aware of each others work and studies. I was just curious as to a head to head type 3 hour debate with stats and studies. If not why has this not taking place? I just get so confused. Everyone can have their own opinions but there is only one set of facts. However with AS there seems to be 2 sets of facts when I look for them.

Subjectively - I am partially saying this cause Im in pain still and am really missing frenchfries!

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#465581 - 03/24/12 04:37 PM Re: Can dialysis help in any way? [Re: Alisvan]
mig Offline


Registered: 04/27/02
Posts: 12307
Loc: ON, Canada
Oh a c-diff infection, how horrible for him, it seems to be everywhere now. My Mom caught c-diff too, but during a hospital stay following an operation a few years ago (not on the dialysis ward).

I doubt that a 3 hr head to head would make any difference. They don't agree on each others research methods/protocols, plus it's difficult to prove a negative. In other words, those who didn't find that Kleb was the culprit, can't say with 100% confidence that it cannot be either the culprit or one of the culprits. As you can no doubt tell, my understanding is quite limited, but if you are coming out to the Spondy Symposium, they usually have a Q&A period - so maybe you should prepare a question. I can tell ya who to ask! Maybe ask if they'd consider doing a diet study. smile

Your AS really does sound stubborn if none of the treatments are having any positive effect. It is such a rotten disease, eh.

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#465583 - 03/24/12 06:40 PM Re: Can dialysis help in any way? [Re: Skywalker]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
Originally Posted By: Skywalker

I have eaten no starch since December and for the last month have literally only ate spinach, apples and tuna all raw and alone. My MRI last week still showed a ton of Bone marrow edema so for me at least even with diet and TNF blockers something is a rye.


I have no experience with TNF blockers, but here are a couple ideas regarding why diet may not be working for you

1. most apples sold in grocery stores are starchy because they are not allowed to ripen long enough on the tree -- read about it many times, confirmed it myself with iodine and samples from different varieties and batches of apples, including some grown within this county. I had to give up on eating apples, now eat thompson raisins and walnuts instead.

Now of course I don't know your situation; maybe you're eating apples in perfect condition from a tree in your own backyard. Just something to consider.

2. the diet-success thread has cases where diet only worked after someone took antibiotics. This implies problems with germs colonizing outside their gut, which trigger the unhealthy AS immune response just as much as the wrong type of germs inside the gut. For instance, it is known that bladder infections can cause reactive arthritis, and klebsiella can cause such infections, sometimes "asymptomatic" meaning no noticeable bladder infection symptoms... and it can live in other parts of the body as well. Who knows, other germs that cause "cryptic infections" might also contribute to some cases of AS. Even if gut klebsiella is a very common trigger, doesn't mean there aren't others.

If all other harmful germ colonies can be eliminated, then reductions in gut colonies should lead to AS improvement. Of course not every type of antibiotics works for every germ, and common bacteria are picking up more resistances all the time. Dragonslayer is an example of someone who experimented with multiple antibiotics until finding ones that worked, and only afterwards was able to notice improvement from strict diet.

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#465584 - 03/24/12 06:42 PM Re: Can dialysis help in any way? [Re: Alisvan]
Skywalker Offline
Journeyman_AS_Kicker

Registered: 04/02/11
Posts: 105
Loc: Cambridge ,Ontario, Canada
Well they have a small effect I feel like 30% better, but really far removed from yester year.

As far as the debate , I would just like to see if there is duckin and weaving or some sound answers from either side. I like to see people debate, I find I learn as much from watching their interaction at times, as the content itself. How can 2 sides have 2 different sides of facts?


I did plan on putting the starch question and/or about a study on my paper as to be my question at SPARCC.

Didnt mean to hijack the thread.

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#465595 - 03/25/12 12:13 AM Re: Can dialysis help in any way? [Re: Skywalker]
SJLC Offline
Iron_AS_Kicker

Registered: 02/16/10
Posts: 1046
Loc: CA, USA
Originally Posted By: Skywalker
Well they have a small effect I feel like 30% better, but really far removed from yester year.


Have you considered trying antibiotics then? I was planning on trying them myself if my pain stayed too high despite the diet. I don't worry about the exact mechanism, but in general the bacteria-trigger theory makes a whole lot of sense, given that the same HLA-B27 gene is known to cause reactive arthritis as well. Same genes, same collection of symptoms, but they only call it spondylitis if the docs don't detect an acute infection as the trigger. Chronic low-level infections can be very hard to detect, so-called "cryptic infections", and those could easily trigger the same immune malfunction as the acute infections.

Also I don't want to belabor the point too much, but if you are eating apples from a grocery store, there is a very good chance you are NOT eating starch-free. It seems like you are trying to err on the side of extreme caution with a greatly restricted diet (which I have done as well), and apples could easily be sabotaging your effort.

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#465604 - 03/25/12 05:19 AM Re: Can dialysis help in any way? [Re: Alisvan]
Skywalker Offline
Journeyman_AS_Kicker

Registered: 04/02/11
Posts: 105
Loc: Cambridge ,Ontario, Canada
What should I be swapping the apples out for and what kind of juice should I be drinking? I did get the apples from the store but the iodine said they were ok, and I checked things daily to try to be safe. Keep in mind that acid from fruits can be hard on my belly too thats why I went with apples. I thought after I had it licked I would start adding other foods back into the fold.

How could you take the same antibiotic for say 5 years you would be so immune to them, wouldn't you?

Also cause I was concerned the team that helps me has checked my temperature bi weekly and I have even swallowed at 5 different times a type of temperature reader for over a 5 month period. They always came back normal. These little readers stayed in me and tracked my temperature real time.

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#465605 - 03/25/12 05:19 AM Re: Can dialysis help in any way? [Re: Alisvan]
jroc Offline
Decorated_AS_Kicker

Registered: 10/30/08
Posts: 728
Loc: New Zealand
Quote:
I know they were aware of each others work and studies. I was just curious as to a head to head type 3 hour debate with stats and studies. If not why has this not taking place? I just get so confused. Everyone can have their own opinions but there is only one set of facts. However with AS there seems to be 2 sets of facts when I look for them.

here are a couple of typical examples of the klebsiella AS hypothesis being mentioned in recent peer reviewed journal articles discussing the involvement of the gut and bacteria in AS. basically the evidence just doesn't stack up and that's why the theory is not currently accepted, although it hasn't been disproven and is still a possibility.to his credit Ebringer is still getting journal articles published. his latest was in 2007 in Clinical Rheumatology - http://www.springerlink.com/content/b58r068234562132/

"The debate regarding the potential role that bacteria play in the pathophysiology of the SpAs has been, perhaps, the most contested with AS. Environmental triggers, such as bacteria, have not been definitively established as aetiological for AS but ample data suggest this possibility. For years, it has been suggested that Klebsiella pneumoniae (Kp) is responsible for disease initiation in AS [89]. Some of the earliest reports linking Kp to AS demonstrated increased prevalence of Kp in the stool microflora of patients with this condition; there was also a suggestion of Kp correlating with disease activity [89]. Proponents continue to cite several reasons for this association, including molecular mimicry between Klebsiella and the HLA-B27 antigen, as well as several types of spinal collagen, and increased antibodies to Klebsiella in AS patients from many different countries [90]. In keeping with this theory, other studies indicate that CD4 and CD8 T-cells are stimulated by Klebsiella HSP60 in the majority of patients with AS whereas, this response was absent in normal controls [91]. In terms of examining potential differences in various epitopes of Klebsiella, data suggest, somewhat surprisingly, that HLA-B27+ and HLA-B27- AS patients both recognise the same epitope; however, there is a different quantitative response [92]. Conversely, early data questioned the relationship between Klebsiella and AS [93], and more recent data suggest no differences in cellular or humoural immune responses with respect to Klebsiella in patients with AS, unaffected family members or normal controls [94]. The role that Klebsiella plays in the pathophysiology of AS remains uncertain.

More recently, another stool microflora, specifically bacteroides, has been implicated as a possible causative agent for AS [95]. In this study, stool samples from 15 AS patients and 15 matched controls were compared. A significantly higher prevalence of sulphate-reducing bacteria was demonstrated in the AS patients; in addition, there was indication of a possible loss of immunological tolerance to Bacteroides. This same group performed follow-up studies suggesting that reduced interleukin (IL)-10 production in response to stimulation with autologous Bacteroides allows inflammation to develop and persist in AS patients [96].

Whether Klebsiella or Bacteroides are truly aetiological for AS, ample data dictate that patients with AS (as well other types of SpAs) have evidence of inflammation on ileocolonoscopies that resemble that of IBD [97,98]. In addition, intriguing animal data further implicates stool microflora as the cause of AS. Animals predisposed to developing AS or AS-like conditions fail to develop disease in a germ-free environment; however, as soon as they are exposed to bacteria that exist as part of stool flora, disease ensues [99101]."
- Bacterial agents in pondyloarthritis: a destiny from diversity? Best Practice & Research Clinical
Rheumatology 2010


"In ReA, specific bacteria seem to be responsible for triggering and perpetuating inflammation. Extrapolation of this observation to AS has led to several individual species of bacteria being implicated in the pathogenesis including Klebsiella pneumoniae, Bacteroides vulgatus, Disulfovibrio disulfuricans and Salmonella spp.69,7276 An increased prevalence of fecal carriage of Klebsiella species in patients with AS was reported originally by Ebringer et al.77 In a subsequent study of a large cohort of patients and controls, no difference in overall fecal carriage of Klebsiella was noted, but association between fecal carriage of Klebsiella pneumoniae and active inflammatory disease was suggested.78 Although an association between active disease and fecal Klebsiella carriage was supported by one study79 the measures of disease activity used were not robust by current standards. Furthermore numerous authors have failed to confirm any correlation between fecal carriage of Klebsiella and AS,69,8082 and dynamic studies assessing disease activity and fecal carriage of Klebsiella over short time periods showed no association.82,83

Elevated levels of specific antibodies to a range of Enterobacteriaceae have been demonstrated in AS84,85 but this finding is likely to reflect increased intestinal permeability rather than imply a causative role for these organisms. Indeed Klebsiella antibodies have also been detected in CD. In the light of recent advances in our understanding of the pathogenesis of SpA the idea that a single triggering organism is responsible for initiating and perpetuating AS seems too simplistic.87"
- The Immune Response to Gut Bacteria in Spondyloarthritis: A Role in Pathogenesis? JOURNAL OF CLINICAL RHEUMATOLOGY
& MUSCULOSKELETAL MEDICINE 2010


and here is where it get's really interesting. a gluten free diet that significantly reduces polysaccharides (starches) has been shown to increase the number of Enterobacteriaceae (a family of bacteria of which klebsiella is a member which are generally considered to be proinflammatory and harmful) whilst simultaneously reducing the number of beneficial bacteria (http://www.ncbi.nlm.nih.gov/pubmed/19445821). rather than making things worse, because the total number of bacteria in the gut declines, the diet causes decreased bacterial immune stimulation and markers of inflammation. so now you have a species composition in the gut that it is actually worse than before but causes less inflammation due to the decrease in total bacteria count. now add back in starches and you are now feeding the increased proportion of enterobactericeae and less of the beneficial bacteria and so there will be even more inflammation than before embarking on a low starch diet. a quick flare up of symptoms upon reintroducing starch will reinforce the idea of the starch->klebsiella->AS theory when it may not be the case. often people report becoming more sensitive to starches after NSD and sometimes they develop other food intolerances (often fruit and nuts which contain fibre that feed gut bacteria) after long term dieting. a reduced starch diet or fasting may just be a nifty trick to decrease the total amount of bacteria in the gut (at the expense of worsened species composition). you would expect the same to occur when taking antibiotics which have also been shown to reduce gut inflammation and improve AS symptoms - http://www.ncbi.nlm.nih.gov/pubmed/17458395).

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#465611 - 03/25/12 06:33 AM Re: Can dialysis help in any way? [Re: Alisvan]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 107
Originally Posted By: Alisvan
I'm new to the forum, but was curious whether there has been any research done on dialysis treating AS? Given that it is our blood, could we wash it through or treat it through a process like that?

Gerry


There is a chance that dialysis may help with AS by getting rid of the substances causing inflammation. However, I doubt that here are any studies to prove it. It is possible that it has a tiny effect, say reducing inflammation by 5 percent. For such modest gains, it would not be recommended as routine treatment, as dialysis itself has complications.
_________________________
Most likely psoriatic spondylitis. HLA - .

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#465724 - 03/26/12 09:20 PM Re: Can dialysis help in any way? [Re: Skywalker]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 501
Loc: phoenix
Originally Posted By: Skywalker
Ok misinformation just abounding here.

1) The reason dialysis is hard on you is the crap floating around in you till the next dialysis, not the dialysis itself. And if you were HLA b27+ you'd still be having that blood dialisis just filters waste from it, on top of that your bones would still make your blood with the surface antigen.

2) I have eaten no starch since December and for the last month have literally only ate spinach, apples and tuna all raw and alone. My MRI last week still showed a ton of Bone marrow edema so for me at least even with diet and TNF blockers something is a rye.



One question I have = has Ebringer ever had debates with other professionals in the field, if so I would love to see the back and forth on the subject. If it exist i cant find it.


Oh the misinformation.

Dialysis is very dangerous. I've gone from working in the ICU to being a diaysis nurse at my hospital so I can provide some FACTS.

Mig I'm glad your mom has survived 10 years she obviously takes good care of herself.

During the dialsyis procedure itself blood circulates outside of your body and water is extracted from that. An electrolyte acid based diaylsis bath is used that removes the toxins from the blood through an artificial dialyzer.
Blood pressure can drop, a blood clot can form and you can die during the procedure. But when i say "die slowly" its the effect of the treatment itself that will reduce the life of the patient. The heart takes a beating during the procedure people are wiped out from it. Average life expectancy on dialysis is about 5 years. People who take great care of themselves do much better of course.
as to why it doesnt help our illness it's because the antigens which cause our immune problems are located in the plasma of our blood. Dialsyis does not effect this. What could is PLASMA PHERESIS. We also do this procedure. Our patients are mostly Myesthesia Gravis, polyneuropathy and occasionally lupus. From the studies I've seen they have attempted to do it with RA patients with limited success. It's not known how it could effect AS. But it's very expensive and requires a central line you would have to have for the duration of the tx. wether it be short term trial or in the case of some patients we have years.

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#465747 - 03/27/12 05:27 AM Re: Can dialysis help in any way? [Re: Alisvan]
Skywalker Offline
Journeyman_AS_Kicker

Registered: 04/02/11
Posts: 105
Loc: Cambridge ,Ontario, Canada
I don't believe that I miss informed anyone. I commented on the die slowly part then you back it up mostly with things that can kill you suddenly. Im not saying its not dangerous or wont shave years from your life. However compared to having a couple of whipped kidneys your outcome can be very positive.

Im not an expert, but one of my good friends and a few of my other friends are on dialysis some even 6 days a week. This has allowed at least one of them to live at least a extra 25 years. Blood pressure drops and the cramping are constant and seems to very with them but nonetheless it is just awful. My wife and I donated some tablets to the center to try to make the peoples time there more enjoyable. It really is an awful way to have to live. We also chip in to raffle away a dialysis 7 day cruise for people every Christmas. As you know this situation can really trap you and limit travel.

Im not making dialysis seem all warm, fuzzy and safe, but it sure beats death.

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#465806 - 03/27/12 08:45 PM Re: Can dialysis help in any way? [Re: Alisvan]
Pea Offline
Captain_AS_Kicker

Registered: 02/24/11
Posts: 1911
Loc: Pacific Northwest
Hi Gerry,

Glad you are a new member. As you can see, there is a mix of information. It was a question though and to me, no question is better then not asking. We are all at different year's in our struggle with this disease and have all tried different protocol's. You keep coming back and asking questions. You don't learn anything unless you ask. This is very important for all of our new member's.

Sometimes we all need to step back and remember when we first got diagnosed and remember how scared we were and how many questions we had. When I was dx'd, there was one small one page brochure on A.S. Keep coming back and keep asking your questions.
_________________________
Pea
Diagnosed with A.S. 28 year's ago.
Diagnosed with Fibro 9 year's ago.
Remicade, Intrathecal Pain Pump 2013

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