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#264480 - 02/24/14 09:31 PM Re: article on AS and diet therapy [Re: Chris Miller]
SamW Offline
Registered Visitor

Registered: 02/22/14
Posts: 5
Loc: Los Angeles
Hi All, New to this site and forum. I wish I could have found this site long time ago or at least the internet was much more popular 30 years ago. But my spondylitis has done itís damage and itís still not letting off any steam till this point.
A little history of myself. My name is Sam, I have ankylosing spondylitis for almost 30 years now. The pain started when I was 12 years old, as far as I remember. It started suddenly and the pain was pretty extreme. Within a few weeks, I have so much pain, I was unable to walk. Thatís when I started to see doctors at childrenís hospital. I was diagnose with juvenile arthritis and was treated with pain killers and vioxx. Over the next few years, the pain has been on and off as it progress. At this point, doctors has diagnose with rheumatoid arthritis. At this point, the doctors had giving me more medication, Pain Killers, NSAID (some already been taking off the market, due to extreme side effects), and steroid and even try Asian herbal medicine and acupunctures. Medications has done some of itís job to allow me to move on without much pain, but itís only a cover up. It really does not cure the problem. As my problem progress, the medication started be less and less effective. Finally at about 20, my doctors finally said it was ankylosing spondylitis.
At the age of 23 years old, I was no longer able to walk. In 1995 and 1996, I already have both of my hips replaced. My doctors had gone through everything with me, know I was so young, going through both 2 major surgery like that itís very unheard of and I itís unreverseble, but I did get the best surgeon that did the replacement for me. As a matter of fact, I was the youngest person he operated. Also I was the first person he used the new titanium hip for my replacement. My surgeon posted my hip in a medical magazine article. Doing my second surgery, I had complications and blood pressure has been getting extremely low. The hospital had to pump 4 bags of blood in me to pull me out of the danger.
After my surgery, I felt like I have new legs, they work so great, I was able to walk again, go places I wanted to go. Felt so great. Thou my hips are fixed, but the AS disease continues to eat me up. Currently my whole spine has been fused from my neck down to the last bone in my spine. All my orthopedic can do was to play around with my medications. Over the years, I have tried pretty much all the medications out there and more. NSAID did work for a certain amount of time, than I started to bleed in my stomach if I take too much. Steroids didnít really do much. Than move on the Biologicals. First started with Enbrel, didnít really do much. Than switch over to Remicade, had to pushed up to the max allow for my weight before it has any effect. Remicade was doing really well for about 5 years, than I had an insurance issue and had to go off it for about 4-5 months. But when I finally got insurance again, went back to remicade, it didnít have the same effect, and after the 3 dose, I develop an allergic reactions. I was unable to breathe doing my infusion. My doctor had to took me off of it right away. Next he try Orancia, had 4 infusions and didnít really have much effect. Next try Humira, Humira works right away, I can feel the med working in my body, but I had a short blackout from it. So had to stop that too. Currently I am only on Celebrex, taking the least dosage as possible, because if I take more, my stomach starts to act up again and bleed as well as my colons. Now my Doctor wants to try a new mec call Cimzia, but I have yet to start, because I cannot afford it, even with insurance, I still have to come up with a few hundred.
This is not the last I heard from my AS. Over the last 7-8 years, I had develop my anxiety and panic disorder, which has sent me to the hospital many times thinking I was going to die from a heart attack, because it gave me all kinds of chest pressure and many more symptoms. I had been through so many more other test of the heart and follow closely by a cardiologist; all the test came back negative. Thank god. But the anxiety disorder has taking the rest of my happy life that was left over by my AS problem. Since my Anxiety kick in years ago. I also had develop a major sensitivity against medications. Now every time a doctor give me a new med, it scares the heck out of me. Maybe that is what happen with Humira that gave me a blackout. Itís really weird. Ever since the Anxiety, even the slightest dose and the same meds I had been taken before will cause issues. Even Celebrex, which I had been on and off for many years. Sometimes the smallest dose would give me some sored of weird pressure like sensation in my chest, but sometimes I have no issues at all. I canít figure out why is that and neither my doctors.
For the last few years, all my chest pressure, short of breath, etc. was completely blamed on my Anxiety, cause all my heart test came back negative, until recently thereís been more problems than usual, so I had a very long talk with a few of my doctors, specially my cardiologist, psychologist and my rheumatologist whom all agreed there are some problem with my chest. They all agreed that the anxiety is a problem, but there is an underlying problem that is bringing on the anxiety rather than just the anxiety that is causing the chest discomfort. Recently just had a lung CT and a breathing test. As for the result, My spondylitis has cause my lung to shrink due to limited expansion of the chest and ribcage. Currently I only have 58% capacity in my lung due to my AS.
Sorry for the long story, but I see this is an old post and itís still going on for a few years with many interesting things. I just started to realize and found that some diet can slow down my AS progression and some food such as sugar can cause my AS to flair much faster. All these times since I was young, I had never knew why sometimes my days are better and sometimes the days are extremely bad. Especially when the medication are working, it does not matter what I eat, I do not feel the pain as painful because the medication just covers it up, until the last couple of years when the biologicals are not really working. I realize if I pop a soda that day, I would have a really tough time getting through without popping another pill. Just recently I started to experiment with changing my diet to low starch and low carb. I do realize that my pain is not as aggressive with the low starch. As for Carb, Iím not sure thatís plays a roll, but most of the starchy foods are also very in carbohydrate as well. Thou I still have pain and stiffness, but if I can cut my medication down, itís already beneficial to me. If anyone else has any diet suggestions, please share it with me. Iím just about to hit the end of the road already with my AS.
_________________________
40 with AS, total Spine fusion, Both Hips replaced at age 24-25 years old and a Right shoulder replaced in Jan. 2013. Also with multiple Health issues, Anxiety and Panic Disorder, High Blood Pressure, and very sensitive to Medications.

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#264483 - 02/24/14 09:49 PM Re: article on AS and diet therapy [Re: Chris Miller]
SamW Offline
Registered Visitor

Registered: 02/22/14
Posts: 5
Loc: Los Angeles
Sorry, I also forgot to add. I also had a right shoulder replaced in early 2013 and my left shoulder is also not functioning too well.

Also, being an Asian, cutting starch and carb is specially hard, because mostly all of our food group are consist of some kind of starch and carb. so frustrating.
_________________________
40 with AS, total Spine fusion, Both Hips replaced at age 24-25 years old and a Right shoulder replaced in Jan. 2013. Also with multiple Health issues, Anxiety and Panic Disorder, High Blood Pressure, and very sensitive to Medications.

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#264494 - 02/25/14 10:13 AM Re: article on AS and diet therapy [Re: SamW]
Tacitus Online
Registered Visitor

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

Quote:
. If anyone else has any diet suggestions, please share it with me. Iím just about to hit the end of the road already with my AS.


The best source of recipes is Carol Sinclair's "The New IBS Low-Starch Diet," with foreword by Professor Alan Ebringer that describes his opinion of the mechanism for AS which has been reduced to practicable employment.

Every culture has the same opposition to going starch-free: Italians and their pasta, Irish with their potatoes, but Indians are the worst: Vegetarians by religion and primary tendencies.

For those of us who have had AS for so many years duration, I am certain that diet is not enough, but a proper AP should be undertaken and finding a cooperative physician, perhaps recommended by the Road Back Foundation, can be very helpful.

The link in my signature to the dropbox page "AS Resources" also has, by way of example, my own AP (Antibiotic Protocol) to use as a guideline in designing Your own, if that is what You are interested.

I experienced the shoulder bursitis and inability to walk, and almost begged for a hip replacement, but the old doctor just advised against that and told me to get well on my own--many years later, I did just that. And I hope You are able to avoid much more--I finally had to have an extensive osteotomy and earlier, Harrington rods and hope I don't have more surgeries in future (the recent broken leg might be another part of AS bone-wasting issue), but today my AS activity is very close to zero and ESR is between 1 and 9 whereas it was >100 BD (Before Diet).

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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#264565 - 03/01/14 02:02 AM Re: article on AS and diet therapy [Re: Chris Miller]
SamW Offline
Registered Visitor

Registered: 02/22/14
Posts: 5
Loc: Los Angeles
Thank you John for the information. I understand just the diet is not going to fix or control my AS, but if I can get some relief from it, that certainly beats taking more meds or more surgery down the line.
My damages had been done and surgeries had been performed many years ago. I just want to see if I can cut the medication down to the minimal simply because of the side effects.
I have to agreed with you on every culture has the same opposition. It's really not easy to go starch freend I really don't think I can either, but to cut it down is a benefit already.
It's sad that I will have to under go another 2 major surgery to replace the replacement hip, because they only last for 15-20 years.
I'm also taking a trip over sea to search for other alternative next week. We'll see how that's going to turn out.
Thanks again, I will look up the diet link.

Sam
_________________________
40 with AS, total Spine fusion, Both Hips replaced at age 24-25 years old and a Right shoulder replaced in Jan. 2013. Also with multiple Health issues, Anxiety and Panic Disorder, High Blood Pressure, and very sensitive to Medications.

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#266331 - 05/13/14 08:48 AM Re: article on AS and diet therapy [Re: Chris Miller]
TomLandry Offline
Registered Visitor

Registered: 05/08/14
Posts: 5
I have just recently been diagnosed with AS, although it still needs to be confirmed by MRI in two weeks. My symptoms right now are moderate lumbar pain and stiffness and I just had a bout of iritis.

After reading this thread I think it is worth while to start the LSD and will do so ASAP. My question is since the rheumy wants to start me on humeira in two weeks should I take the humeira? In other words I would love to control it by diet but should I be concerned with missing a window of opportunity by not starting humeira right away? My understanding is it actually slows progression of the disease.

I do not take NSAIDs and have had no gut issues to date.

Thank you for any responses!!!

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#266354 - 05/14/14 08:18 AM Re: article on AS and diet therapy [Re: TomLandry]
Tacitus Online
Registered Visitor

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

Diet is an adjunct to be employed along with conventional therapy but especially the LSD was intended as a long-term solution when used with enteric-coated sulfasalazine or other drugs besides NSAIDs; Humira would be wonderful.

In a scientific study, it is important to not change more than one thing at a time, but we are not doing some classroom statistical project where we can do SPC (Process Control), but there is only one sample--and we should throw anything and everything at AS; treat this as aggressively as possible.

So Good Luck with diet and the tnf-a drug; I am certain that, together, they will be synergistic as was proven myriad times at the Middlesex AS Clinic by Ebringer, et al.

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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#274858 - 06/04/16 03:47 AM Re: article on AS and diet therapy [Re: ]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 332
Originally Posted By: Serafin
33 years old, white male currently suffering from A.S. for nine years. I had to give up working last year. For about a year afterwards, my stress level decreased significantly that lead to a decrease in pain. Additionally, since Feb 2014, with guidance from my primary care physician, I have been on a low-carb, low-fat, high protein diet and I've lost about 50 lbs doing it. I no longer consumer soda, refined sugar and anything that has flour in it. I put myself through agonizing gym/swimming exercise 3-5 days a week. I've tried every medication except the TNF inhibitors ... I'm currently looking into it because even with the decreased weight on the joints, the exercise, the new diet, I still feel pain when standing/walking/sitting/laying (sleeping). Everything I've changed has helped but it doesn't solve the problem.

Medical conditions that were resolved or lessened due to my changes were Depression better managed, Sleep Apnea lessened, Acid Reflux resolved, High Blood pressure resolved, no longer Pre-Diabetic.


Hi Serafin,

Sounds promising. What was your ESR/CRP before and after your diet?

Thanks
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016

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#275045 - 06/20/16 07:39 PM Re: Sticky wanted on Diet [Re: Chris Miller]
nealhoffman Offline
Registered Visitor

Registered: 01/22/15
Posts: 2
For those already finding success with LSD, and exercise as a positive way of controlling AS, I have found that the addition of a Curcamin supplement is an easy addition, that completes the treatment. There are a number of companies that produce this Turmeric based concentrate. I have found the Brand name Curamin by Terry Naturally to have the best formula.
Some companies do not make as pure or potent a formula, and seem to charge less. But the cost equals out in the need to ingest several capsules instead of one 750mg capsule.
Standing straight for four years after twenty, of pain, stiffness, and medication that almost killed me.
Neal H

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#275371 - 07/15/16 05:30 PM Re: Sticky wanted on Diet [Re: Chris Miller]
maryshell Offline
Registered Visitor

Registered: 07/13/16
Posts: 6
Is here anyone who is a vegetarian and trying LSD? I have to eliminate meats and mild products due to another medical issues and I'd like to go on LSD, but now sure how it's going to look. ((

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#275388 - 07/17/16 09:19 AM Re: Sticky wanted on Diet [Re: maryshell]
Tacitus Online
Registered Visitor

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

When I started NSD, I tried to remain vegetarian but after speaking with Professor Ebringer I resolved to resume eating meats after 22 years! It was a difficult transition, but vegetarian/vegan is not compatible with AS!

Now that I have no active disease, but developed gout (perhaps due to long-term AS-related kidney issues), I have become vegetarian once again. The foods I like are mostly vegetables, properly prepared with a little hard cheese sometimes. Tofu is good, nuts (except obvious ones like legume peanuts and especially cashews), halvah, coconut, raisins, properly tested fruits, etc. There are many options, but it is difficult even still to find the variety we need.

I have been working on a protocol--some suggestions--for AS guys in India--which is worst-case as far as diet is concerned.

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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