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#110450 - 06/01/03 08:25 AM Re: ¯-Questions-? [Re: DragonSlayer]
earthwoman Offline
Major_AS_Kicker

Registered: 01/25/03
Posts: 2049
Loc: NH
Great questions John! I will be anxiously waiting the answer to #8. That's one that has me really baffled.

peace
Kathy





"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."
_________________________


People will forget what you say
People will forget what you do
But people will never forget, how you made them feel
- Maya Angelou -


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#110451 - 06/01/03 08:35 AM Re: ¯-Questions-? [Re: DragonSlayer]
earthwoman Offline
Major_AS_Kicker

Registered: 01/25/03
Posts: 2049
Loc: NH
Oh, I almost forgot. Thank you John for all the research you have done and continue to do in order to keep us informed and educated. I am looking forward to anything new you discover. I hope you have a great trip and lots of fun with our AS brothers and sisters

Take care!
Kathy



"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."
_________________________


People will forget what you say
People will forget what you do
But people will never forget, how you made them feel
- Maya Angelou -


Top
#110452 - 06/01/03 09:39 AM Re: ¯-Questions-? [Re: DragonSlayer]
krishna Offline
Fourth_Degree_AS_Kicker

Registered: 09/28/01
Posts: 302
Loc: CA, USA & AP, India
Dear John,
Here are a couple of questions I would like to ask the Guru's Guru:

1. How does Prof's theory explain the recent findings New Research Points To GAGs As Cause Of RA "Rheumatoid arthritis research which preceded the work of Wang and Roehrl largely focused on peptides, or fragments of protein. The Harvard researchers suggest instead that glycosaminoglycans, or GAGs, are the lead suspect in what causes rheumatoid arthritis. GAGs are naturally-occurring carbohydrates found in the cartilage, connective tissue, joint fluid, and skin. GAGs are complex carbohydrates, not affected by the carbohydrates, starches and sugars, we consume."


2. Does insulin resistance have any impact on AS? Pls refer to the thread started by Gerard Does this diet work in another way? . "Insulin resistance makes that our body needs much more insulin before reacting on higher blood sugar levels. The cells that do respond to these higher sugar levels are the fat cells and guess what they use cytokines in their regulation. So increases in blood sugar levels lead to increases in cytokynes among which TNF the substance that promotes inflammation. So my assumption is we can fight inflammation by keeping blood sugar low and constant and thus increasing insulin sensitivity. Interestingly these things all have been noticed in literature. In diabetes and coronary heart disease literature we can find that insulin resistance leads to higher inflammational activity while in arthritis literature you can find that inflammation leads to insulin resistance. But nobody in literature has compiled these things together and made enhancing of insulin sensitivity the key in fighting inflammation, probably because they don't realise how unnatural it is in the light of our evolution to eat high carbohydrate diets. "


Thanks very much,
Krishna


Top
#110453 - 06/01/03 12:00 PM Re: ¯-Questions-? [Re: DragonSlayer]
lindaguest Offline
First_Degree_AS_Kicker

Registered: 03/06/03
Posts: 189
Loc: Cascade, Idaho, USA
John,

The first two times I did the 3-day apple diet I had wonderful results. The third time my results were different. The uveitis seemed to worsen, I perhaps only ate three apples/day, and I did take several celebrex. So, why is the apple diet usually successful? I recall discussions in this forum that it is the gut-healing effect and anti-inflammatory effect of the quercetin in the apple rind that accounts for its efficacy. Perhaps on my third attempt I did not ingest enough apples and, therefore, inadequate quercetin. Perhaps the celebrex fouled my results. Or, perhaps, I was in for the mother of all flares and had a relatively great outcome.

Since rutin digests to quercetin and I've had wonderful effects using rutin 500mg QID, I think the answer may lie in the fact that I didn't eat enough apples during my third apple fast to achieve high enough levels of quercetin. That logic is marred, however, by the fact that many others swear by fasting and other mono-diets??!!

I am so perplexed. Anyway, could you please ask the good Dr. about his thoughts on the apple diet and rutin in the treatment of AS?

Thank you!
LindaG


Top
#110454 - 06/02/03 12:08 AM Re: ¯-Questions-? [Re: krishna]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines
Dear Krishna:

I know that Ebringer has some knowledge of the role of hyperinsulinism in AS, and I will certainly ask him about making the connections between this and inflammation.

The GAGs seem to participate in the inflammatory cycle, but whether they alone cause arthritis is a leap--as a common component of synovial fluids, why doesn't everyone get RA if they possess GAGs? I will review the previous postings and links, then ask Ebringer his thoughts on this, too.


Thank You, for the input,

John

_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

Top
#110455 - 06/02/03 12:20 AM Re: ¯-Questions-? [Re: lindaguest]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines

Hey, LindaG--

I will ask Ebringer what his thoughts are relating specifically to the apple regimen.

You may have answered your own question as well as he can, as he has not employed the apple diet in his clinical practice.

The apples do more than provide cell repairing quercetin; I think that they are a very effective 'intestinal sweep,' especially suited to expel the bad bacteria. The Celebrex, however, probably did adversely affect your results and the lack of bulk may be another very good reason.

Will advise you of his answers,

John

_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

Top
#110456 - 06/02/03 03:24 AM Re: ¯-Questions-? [Re: DragonSlayer]
bilko Offline
Colonel_AS_Kicker

Registered: 09/05/01
Posts: 2354
Loc: London
John,

Ebringer's crackpot diet - I finally warmed to him when I realised he was more interested in cows. And this is the question I would like you to put to him for me... What are the principle objections the prion theorists have to his theory?

moos to you po face






sublata causa tollitur effectus as we say
_________________________
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.

Top
#110457 - 06/02/03 09:03 AM Re: ¯-Questions-? [Re: bilko]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines

AGRIBUSINESS--

That will cure many human diseases; when we are treated as well as cash cows!

I shall ask, but we can guess at the answer--BSE is big business now, not just a vegetarian conspiracy. And the Nobel committee! Can't embarrass them (again).

TTFN
John

_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

Top
#110458 - 06/21/03 12:34 AM Answers [Re: DragonSlayer]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 5989
Loc: Reno or SFLU Philippines

Well, Ebringer was able to touch upon almost all of our questions directly, since I made a copy for him before his presentation. I was able to videotape some of the lecture, and can review this when required for clarification. I have added some of the PM or email questions after removing the sender's name.

Best Regards to all,
John


Questions for Professor Ebringer:

1) Although it has been suggested that the incidence of AS is higher in males than in females, do you think this has more to do with delayed diagnosis than gender?

The diagnosis rate really is higher in men than women, and it could be attributable to delayed onset. Delayed onset in women versus men might be due to several factors, especially the caloric requirement of males at puberty who develop the propensity for sports and vigorous physical exertion; they eat anything and everything and since quantities go up, starch ingestion is proportional. Additionally, differences in the physical location and length of lymph ducts that are directly involved in AS can also account for delayed onset. Since the onset of AS is delayed, radiologic changes of the SIJs will be also be delayed or not happen at all, so a greater number of women have subclinical conditions, or suffer due to a protracted diagnostic period.

2) When employing the new TNF-á suppressors, some of our members enjoy not only total remission, but are totally freed from dietary restrictions and cannot then believe in any connection between diet and AS. Might this be long-term folly? Is there a simple explanation why both diet and the newer DMARDs are so effective.

All drugs have side effects, and a multidisciplinary approach is best, especially with the agenda of reducing the quantity of drugs required. In the case of the cytokine reducers, and specifically the TNF-a suppressors, they are successful at reducing inflammation and might limit the damage that could potentially result from AS, but they do not reduce the number of cells being destroyed by the immunoglobulin. When I questioned Ebringer further on this point, he was not certain whether this would result in some process similar to the IgA amyloidosis that sometimes results in renal failure, but some related condition is always a concern and a finite risk.

3) And, specifically, does Enbrel affect Klebsiella pneumoniae at all? One member had CRP numbers up to 3.4 and typically 2.0 but could never drop below 1.7 on the NSD. But NOW—after Enbrel—the CRP is 0.29 on a high starch diet!

Enbrel has no effect against Klebsiella pneumoniae. As before, the inflammation indicators are reduced because the inflammatory process has been hijacked; IgAs are still being produced and cells are still dying but not being removed. As a side note, Teresa (aka Zzyzx) has been on Enbrel for almost four years and explained that she does experience some elevated AS symptoms after eating starches.

4) Some people, especially those with AS who are B27 negative, are not convinced about diet. Others have tried it with no apparent success. In your opinion will starch restriction work in all +B27 cases? Any/all +AS –B27 cases?

There might be some valid non-B27 AS cases unrelated to Klebsiella pathogenesis, however, having never found one, he suspects that most ‘neggies’ have some Kp involvement, however, he has not formally studied such a group. To add to this several ‘anecdotes,’ Dr. Giraud Campbell never made any distinction between AS and RA; using his early NSD for both conditions. Others have written who had RA and not AS and also said that the NSD helped them. It might be explained that Proteus mirabilis and Kp both increase in numbers on a starchy substrate and the NSD could reduce their numbers against bladder reinfection.

5) Can the NSD totally halt the progression of AS?

Yes, it has in people who follow strictly. He does not like the absolute term “no-starch” his methods employ ‘low-starch.’ In contrast to our group, I was asking him whether they developed kidney stones, heel spurs, TMJ, bursitis, heart problems, etc. He suggested that these things were rare and tried to quote normal statistics for these things in AS—but his group was on his LSD diet so he personally saw very few of the complications we experience

6) How long should one, suffering with AS, delay before starting the diet? (The drugs seem to help, in milder cases).

If drugs make you worse (cortisone is a very dangerous drug, and NSAIDs might increase AS activity), there should be no delay in starting both the diet and finding the right combination of DMARDs like Azulfidine-EN and personal starch levels in combination with the rare or occasional NSAID, as required.

7) If our immune system has already been trained to recognize the offending hexamer sequence, what good does it do, after the fact, to decrease the triggering bacterium?

Immunoglobulin are not cancers; they do not replicate themselves and are not produced without provocation. Their half life might be two weeks, so after this timeframe a new stimulus (starch ingestion that produces bacteria growth) is required to trigger more immunoglobulin production.

8) Why are people on the NSD such obnoxious crusaders? Does starch restriction atrophy our empathy glands?

“You’ll have to answer that—“ [Ok, if I answer this it will be with my own bias, but I think that, once we find relief from this devastating illness, it is almost impossible for us to imagine that someone would not give the method a try. To see our fellows complaining of the pain and yet just waiting for more damage and more sequelae and reinventing the wheel of misfortune by going back to the doctors for the next poison to test is heartbreaking when there is such an easy solution. We wish someone had told us earlier...that is why we want to get the word to the younger members and why we sound like crusaders]

Maybe you already know the answer to this without asking Professor Ebringer, but it has always confused me. Is someone with primary AS (which I believe I have) as opposed to "reactive" arthritis less likely to be helped by the NSD? I don't have Crohn's, IBS, or any intestinal problem that I'm aware of.

All AS is a result of a reactive arthritis and some triggering event; it may or may not have been noticed. Often patients will say that their AS began after some event (dysentery or trauma), but when questioned to a greater extent, they often suffered with phantom pains as a teen or pre-teen.


Could you please ask how long a person should stay on the diet when it doesn't appear to be working. What is a good trial length without giving up too soon? Some people notice a difference in a week and others go months without a change. At some point if it isn't working there is no motivation to keep going. Thanks

The best measure of whether the diet is working is a reduction in ESR; the patient’s assessment is often too subjective until ESR falls to low enough levels. Even after 9 months some patients have not ‘learned’ the diet enough to experience salient benefits from the LSD, but in almost every case their ESR does drop. (and it does drop in every case where the patient follows the plan).


Another question, John. There was an interesting article in last week's Time magazine about the nature/nurture thing, genetic predispositions and how we may have a predisposition but it takes a trigger of some sort to kick in the genetic results, as in developing autoimmune disorders. Could some of us, perhaps the minority, have activated the gene by trauma to the body rather than a bacterial infection? Setting the immune system off, so to speak? A few years back I had the flu and the virus triggered a massive autoimmune response, polyradiculitis, inflammation of my myelin sheaths which effectively just about shut down all my muscles, I could blink and breathe at half capacity. Spinal fluid was sent to the CDC - - I felt like a lab rat, no one could figure out what was going on - - and the DX was that the virus had triggered my immune system to attack my myelin sheaths. I already had the underlying out of whack immune system but this set it into overdrive. So can a virus, or a trauma (a car accident, for example, or a difficult pregnancy as in my case) cause the gene to turn on? Thanks I'm trying to figure out why the NSD did not work for me. I wonder if it's because I avoided years of NSAIDS and also ate a LSD pretty much all my adult life..


It is interesting to interview people in-depth. It turns out that they almost always had some symptoms very early in life that they dismissed as ‘normal growing pains,’ or ‘everybody has this, don’t they?’ In truth, very few non-B27 young people have back pains and IBS symptoms; these are often precursors that were dismissed too lightly and later, after some trauma or dysentery, when the symptoms become apparent and AS activity elevates, they blame it on this and don’t recognize the earlier, mild symptoms.

I suppose, that since Dr. Inman has told me that they do not know the cause, how is Dr. Ebringer so sure that every case of AS is caused by bacteria? Is it not possible that some people get it for some other reason? Or, perhaps, we all have it for some other reason, but in some people there are factors that enable them to be helped by NSD? but that Enbringer's trials were not able to be replicated by other researchers and therefore the theory never proven. He did make a point of saying that it was never dis-proven either!!! So my question is,... why?

Inman in Canada, by way of example, has AS patients with elevated IgA to Klebsiella, yet he believes in the old receptor theory, so cannot admit that there is a connection with this or any other bacterium. If he checked, he would find that NO RA patients have elevated IgA to Kp, neither do healthy controls; Only ALL of the AS patients do have this. The opposing groups [to Ebringer] have been looking for the sandwich filling [some protein segment that fits into the B27 gap] for at least 30 years and have never found anything. We have a genuine and experimentally provable match, and the accepted mechanism of molecular mimicry for other diseases (rheumatic fever) that has been accepted, so we are saying ‘why not’ for AS, RA, and perhaps MS, BSE, and CJD?

We were given many samples from Dutch patients to analyze, and we were able to differentiate RA, AS, and healthy controls. Other laboratories could not reproduce our results because they do not perform these specific tests very often and, in the case of Klebsiella-specific IgA, not at all; we had to show them how. Now, they HAVE REPRODUCED OUR RESULTS at various laboratories in over 17 countries.

1. How does Prof's theory explain the recent findings New Research Points To GAGs As Cause Of RA "Rheumatoid arthritis research which preceded the work of Wang and Roehrl largely focused on peptides, or fragments of protein. The Harvard researchers suggest instead that glycosaminoglycans, or GAGs, are the lead suspect in what causes rheumatoid arthritis. GAGs are naturally-occurring carbohydrates found in the cartilage, connective tissue, joint fluid, and skin. GAGs are complex carbohydrates, not affected by the carbohydrates, starches and sugars, we consume."

2. Does insulin resistance have any impact on AS? Pls refer to the thread started by Gerard Does this diet work in another way? . "Insulin resistance makes that our body needs much more insulin before reacting on higher blood sugar levels. The cells that do respond to these higher sugar levels are the fat cells and guess what they use cytokines in their regulation. So increases in blood sugar levels lead to increases in cytokynes among which TNF the substance that promotes inflammation. So my assumption is we can fight inflammation by keeping blood sugar low and constant and thus increasing insulin sensitivity. Interestingly these things all have been noticed in literature. In diabetes and coronary heart disease literature we can find that insulin resistance leads to higher inflammational activity while in arthritis literature you can find that inflammation leads to insulin resistance. But nobody in literature has compiled these things together and made enhancing of insulin sensitivity the key in fighting inflammation, probably because they don't realise how unnatural it is in the light of our evolution to eat high carbohydrate diets. "

Paraphrased
There are over 400 cytokines that can be involved in the inflammatory process, and these require the raw materials to manufacture. Unfortunately, these raw materials are foods—sugars and proteins that we must use for energy and the production of new cells; there is almost no way to starve them without killing the host.

If there is an insulin-moderated receptor that changes the effect of inflammation at the target cell, it is certainly not a primary factor but way down the list of activities.


John,

Ebringer's crackpot diet - I finally warmed to him when I realised he was more interested in cows. And this is the question I would like you to put to him for me... What are the principle objections the prion theorists have to his theory?

moos to you po face
Paraphrased and substantiated; Ebringer did not work on BSE by choice…

AGRIBUSINESS--

That will cure many human diseases; when we are treated as well as cash cows!

I shall ask, but we can guess at the answer--BSE is big business now, not just a vegetarian conspiracy. And the Nobel committee! Can't embarrass them (again).

TTFN
John


Why does the NSD not work for some people? Specifically, what else can be done if after 3 months NSD there has only been a negligible improvement in pain and stiffness (B27+ person)?


It takes some time to ‘learn’ this diet and what combination of Azulfidine-EN and level of starch intake is acceptable; this is highly individualistic. Basically, everything should be tested using the iodine before eating it, and you should be seeing results. On the London AS Diet alone, patients had their ESRs decrease, but again, that is a measure that cannot be disputed; it is not as subjective as pain levels. If the diet alone is not working, the addition of some drug may be required—it is very important to get the ESR down by any method possible. I do not generally endorse the use of antibiotics because they have too many side effects to be employed for an extended period, but they may help in some cases, if used properly.


Now the questions are:
Will it be difficult for the diet to work if I keep postponing the diet?I am not on meds since 4 months.

Can NSD stop the progression of AS as soon as I start following the diet in the early stages of AS?Am I in the early stage?

Is AS less intense or painful in the early stages?

What kinds of blood work should I get done every year?

I have developed some floaters in both my eyes 8 months ago,is it related to AS?I do not have any inflammation in my eyes though.


[My own comment is that I believe NSAIDs damage the intestines on a permanent basis—like a wound that is cauterized (or rubbed with ashes and salt for scarification). Once so damaged, the NSD may become a permanent necessity, instead of a regimen to follow on a temporary basis to allow the gut to heal, or whenever a flare has begun.]
The LSD (there is no such thing as a true NSD…) can help reduce dependence upon medication and also reduce the dosages required so that they do much less damage. The diet should be instituted immediately, but it is a personal choice. If on a DMARD, the diet will only be an adjunctive therapy that does not have to be followed so closely—just to the comfort level of the patient.

AS is totally unique to every sufferer, however, it often seems more intense early-on, before remissions, but AS is episodic and some relapses can be very severe, so one should never assume that pain would decrease on a permanent basis.
[My own comment—I have kyphosis and much of my back is fused to the extent that I recently broke one vertebra into two. Pain from this is extreme, and worse than most flares I experienced, so the type of pains might change, and the intensity might be lower for some time, but it can catch up to you and make up for lost time—in some cases…]
[paraphrase]
The uvea of the eye is a type IV collagen that reacts with the Kp-specific IgA. Normally, acute anterior uveitis (iritis) is the result of this reaction. This is a serious condition that can even result in blindness. Other eye conditions can cause ‘floaters,’ but these are not necessarily, or provably, related directly to AS.


_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

Top
#110459 - 06/21/03 04:32 AM Re: Answers [Re: DragonSlayer]
Cheryl Offline
Addicted_to_AS_Kickin

Registered: 09/05/01
Posts: 6762
Loc: Florida
I have read this over very carefully -- it may take a few more readings, I am definitely not a science kind of person -- but one thing that seemed to make sense to me is that a LSD which I have followed for years may be the reason why all my symptoms disappeared once I was on Arava - - because I was still on the LSD, and the combination worked for me. Am I interpreting this correctly? Would Arava have been less effective if I were not on the LSD? My diet consists mainly of fruits, vegetables, nuts, some dairy as in yogurt, butter, and protein (lean meat, chicken, fish), sometimes a bit of whole grain bread or white or brown rice.

Cheryl

Dogs don't care if you make more money than they do
_________________________
My guy If you can't be kind, at least have the decency to be vague. Author Unknown

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