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#175586 - 05/26/10 06:21 PM Re: Sticky wanted on Diet [Re: winelover]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Ah, Yes--

This article rears its ugly head again. I did an analysis concerned about their basic lack of standards--like a control group!

Here is MY OPINION (for what it is worth): NSAIDs

Regards,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#175644 - 05/27/10 07:59 AM Re: Sticky wanted on Diet [Re: Tacitus]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Where is the study on diet, with a control group?
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#175660 - 05/27/10 09:21 AM Re: Sticky wanted on Diet [Re: JenInCincy]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI


WE are (I WAS) the control group.
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#175688 - 05/27/10 01:35 PM Re: Sticky wanted on Diet [Re: Tacitus]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
You can't be in both the control group and the treatment group, John. The truth is there ARE no studies with matched subjects in control and treatment groups.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#175737 - 05/27/10 10:54 PM Re: Sticky wanted on Diet [Re: JenInCincy]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
The truth is that Ebringer had over 600 patients. He wanted all to be on his London AS Diet, but he knew only a few followed it very well. He did studies, but the baseline controls were the patients at his Middlesex AS Clinic who did not follow diet.

Over 20 years all he saw from steroids, MTX, and NSAIDs was severe deterioration and lives devastated by AS, but his preferred combination therapy using diet plus sulfasalazine prevented much suffering and disabilities. He regretted that 30% or more did not tolerate sulfa drugs and so many were still inattentive of diet, so these were his controls.

You want 9 months doing London AS Diet in about 40 individuals and only two have increasing ESR (and he later found out that one of these had a potato every night with dinner). Now Ebringer has how many controls? HUNDREDS. Their ESRs increase with fish-and-chips dinners, pasties, bread puddings, etc etc. But ESR decreases in group following his diet. And in his clinical practice he has almost no drug complications in this group and they do better by every measure--even subjective Bath criteria.

Ebringer had the experience--much more than any other scientist, and he can afford to tell the truth about AS. And I cannot afford to hear more B.S. from the commercial medical establishment; they already damaged me beyond repair!

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#176076 - 06/01/10 04:02 PM Re: Sticky wanted on Diet [Re: ]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6401
Loc: New York
Stuart, stick with your doctors advise. The diet isn't healthy for many people and can cause extreme weight loss.

NSAIDs are the only treatment plan that completely stops fusing. The only medication.

Anna
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#176530 - 06/07/10 10:43 PM Re: Sticky wanted on Diet [Re: Banana]
north Offline
Registered Visitor

Registered: 01/25/06
Posts: 1176
Loc: N Z
I have heard that doxycycline brings down the inflammation and sticking of the cartilage. That rings true with the news of another member who said that his AS went away whilst he was taking doxy for malaria when he was staying in Singapore, but the AS returned afterwards. There is another record of it reducing the spine-sticking in someone else. [sorry I do not have a ref. just now]
Doxy has been suggested in another place as a helpful therapy for cartilage [heart] for its anti- ? and ? properties. [darn that memory!!] Theres going to be a trial I think. ...perhaps someone else can fill in here....
I have never taken meds. for AS - the diet has been sufficient. My spine stuck for a short time in a couple of places but I was able to free it up.
The diet does not cause extreme weight-loss as there are plenty of other carbohydrates available. I think the difficulties only relate to ones lifestyle - if you are used to eating highly manufactured foods instead of basic vegetables, fruits or proteins separately, then it is hard [if not impossible] to separate out the starch.
Factories even add starch to bacon theses days!!!!!!


_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#186897 - 10/09/10 07:04 PM Re: Sticky wanted on Diet [Re: winelover]
Twynducky2 Offline
Registered Visitor

Registered: 10/09/10
Posts: 193
Loc: Alabama, USA
Wow...that is some life story. Thanks for sharing. My story is not so involved with the failures of the medical world. I am sorry you had to experience all of that, John.

I was almost 18 when I had my first flare. I didn't know what it was at the time, of course. My mom had to help me out of bed that morning and every morning after that for several months. I had severe lower back pain that ran down my legs. It caused weakness in my legs and I would just fall down the stairs without advanced notice.

Mom took me to the military doctor who treated me for muscle spasms, as did the next two doctors. I was put on ibuprofen. 500mg, 1000mg, 1500mg three times a day for several months. No relief came. Then I was referred to an orthopedic specialist. There were XRays, leg length studies, scoliosis screening, reflex testing...and finally a diagnosis...it was all in my head. The doctor actually said that. He left me on the ibuprofen and told my mom that he was recommending that I be seen by a psychiatrist. I never went back to the military doctors. My mom did finally convince them to refer me to a rheumatologist from a blood test that showed positive for an arthritis factor. Unfortunately, by the time that happened I was nearing my 24th birthday. By the time the appointment came around I was 24 and was no longer eligible for insurance coverage under my dad. So, that chance slipped away...I still had no diagnosis.

Until I was 27, I just learned to live with the pain. Once I left home, if I couldn't get out of bed, I called into work, sick. When I was 27 my uncle was diagnosed with AS and he told me that I should be tested. I tested HLA-B27 positive. That bought me a referral to a rheumatologist. I got a partial diagnosis...no xray confirmation, but because of the consistant signs and symptoms the doctor began treatment. She didn't set up another appointment and she told me to follow up with my regular doctor.

I had three months of sulfasalazine, but my regular doctor wouldn't refill it. He said I should go back to the specialist. And so it went. I had some awesome relief with Vioxx until they yanked it off the market. Nothing before or since has worked the way Vioxx did...

Started using a chiropractor after an injury to my knee and shoulder while I was working a car accident as a paramedic. I got more relief from him than everything else combined (except Vioxx). It was the first time in almost 8 years that I had an extended time free of pain. It didn't last, but it was nice while it lasted.

I had six pain free months last year and early this year. Then I had a flare that involved my ribcage...that was a first. I had an injury a couple of months later and the pain has not subsided since then. Over the years I have had involvement in my neck, back, ribcage, shoulders, hips, knees, wrists and hands, heels...I recently learned about the jaw connection...didn't know TMJ could be part of it, but that was one of my earliest problems. It started when I was 19. My family doc recently began treating me for some GI trouble...he thinks its because of all the NSAIDS over the years. Last year he finally ruled out everything else and diagnosed me with asthma. I have had signs and symptoms of asthma since I was about 14. With treatment for asthma and severe allergies I had my first almost normal summer in, well....maybe ever. But, then that's another story.

I have good days and I have bad days. I get depressed sometimes, especially when I have been hurting for a while without relief. But each day when I get up, whether in pain or not, I thank God for another day to live and another day to walk and throw the ball for my little dog, Boo. He doesn't even care if I throw it far or not, as long as he can go and get it. smile

I wish this wasn't my life, but it is. So, I will live it to its fullest for as long as God allows me to be here...pain or no pain.

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#187778 - 10/20/10 05:37 PM Re: Sticky wanted on Diet [Re: winelover]
north Offline
Registered Visitor

Registered: 01/25/06
Posts: 1176
Loc: N Z
Stop Press! Eureka!!

I would like to hear if Tacitus [John] has any relief with a change to Vitamin B6 [Pyridoxine]

I have discovered that vitamin B6 is bringing down my sensitivity to starch, and subsequently the progression of the AS. ...Early days yet [GSD typeV disrupts the pyridoxal genetic site]

I also had a deficiency of carnitine.
I discovered that the initial large dose of B6 on its own brought a shredding of the inner lips surface and a prickling of the intestine. That I assumed was a lack of other B vitamins [B2? B3?] and the beginning of bowel problems [IBD? chrons? leaky gut syndrome?]
There are many types of Mcardles variations that are genetic glitches, probably causing at their extreme, some types of AS. [my theory] These are seriously under-diagnosed conditions.

Whats your theory John?
_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

Top
#188110 - 10/26/10 09:49 AM Re: Sticky wanted on Diet [Re: north]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hey, North:

During the previous 11 years solid remission, I have very aggressively taken supplements, especially the Linus Pauling patented mix: Lysine, vitC, vitE, and niacin/niacinamide.

And I have eaten "gut-friendly food" like yoghurt, okra, lychee fruit, sauerkraut, etc.

I have NO DOUBT:
1) VitD, especially from sunlight, has considerable gut-healing capacity
2) Supplements, in general, are very helpful but not the answer
3) AS is related to starch consumption but also the status of the intestinal tract; whatever compromises this can trigger flare episodes and whatever heals this can help eliminate symptoms.
4) I have developed considerable starch tolerance, but it took at least four years of strict diet and
5) Total abstinence from NSAIDs is required again for good gut health.

I do not know about B2/B3 beyond the fact they are somehow related to carbohydrate metabolism and also promote tissue healing and in this they utilize amino acids, so they are co-factors.

The B complex are a class of vitamins that are each very similar one to another and perhaps it is instructive, relative to niacin in particular, that the habit of smoking is extremely inimical to NIACIN--that is even a few drags on those cancer-sticks destroy all of the active niacin in circulation.

Couple this information with the observation that Crohn's Disease is 4-500% more frequent in the population of smokers (and because AS and CD are, IMHO, caused by the same thing, this has implications for AS; stated another way it would be foolish to continue such a preoccupation with a diagnosis of AS and I will expand this to ReA, Behcet's, UnDiffSpond, and others in our five arbitrary Seronegative Psoriatic Spondylarthropies).

I don't know about McCardles, sorry--but there are easily over 200 sequelae of AS and these observations can also have multiple names.

We have a stock market with perhaps over 3500 corporations listed, but that number is dwarfed by the actual number of funds (groups of stocks), so You see the permutations can be in the billions--same with names of diseases we can rack up with AS, so why not call every symptom one disease and two symptoms together call that another disease and these plus a third, well maybe that starts to look like yet another disease.

Well, I like Hippocrates' idea better. When I had AS, it was "John's AS" not fibromyalgia looking like adhesive capsulitis with occasional deQuervain's and TMJ, iritis, and renal calculi...I could go on and on but suffice it to say--

"MY NAME IS AS AND WE ARE MANY"

HEALTH,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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