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Joined: Apr 2014
Posts: 82
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Apprentice_AS_Kicker
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Apprentice_AS_Kicker
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Posts: 82
Hi guys,

have you tried the no starch diet like Bettyrawker suggested ?

I'm 2 months into the diet and finally started to get results, I do eat a lot of honey (which is sugar) and sometimes a lot of chocolate, pork, dairy. Might even get better results if I cut these out as well. Pain went from 7 to around 1 or 2 most days now. I can even almost run now. Hope it gets better. I'm also taking sulfasalazine 2 times a day.

Joined: Jun 2012
Posts: 52
K
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K
Joined: Jun 2012
Posts: 52
We generally dont see our achievements. While reading your message first thing that came in my mind was how brave you are. It is a fact that we are physically not as good as a normal person but even after that you are taking care of your kids so well. Just take a moment for yourself and think that you always have a option to quit life but still you choose to fight against the situation. I know the truth doesnt change that life is hell but still , just feel this sentiment that you could have quit but you are fighting , you are living and fighting so hard just to make so many lives better. Be proud of it. It will help you when you feel low. We all are fighters here. When i think of quitting life . I just think of what after that and i get nothing. So better live this one life best way we can and that depends on us , not on how majority of population lives..


Life is 10% what it happens to you,
And 90% how you respond to it.............
http://mypartnerspondylitis.blogspot.in/
Joined: Sep 2001
Posts: 6,151
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AS Czar
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AS Czar
Joined: Sep 2001
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Namaste, kushagra9120:

People from many cultures have complained to me they cannot avoid starches: Italians complain they cannot give up pasta, Irish and potatoes, Hispanics and their tortillas, beans, etc, but INDIANS are in a real fix. In some respects, I am glad I had not yet discovered the NSD when I lived in India!

HOWEVER, although I know Your plight too well, I have to encourage You to do the right thing by Yourself. And I don't think that taking NSAIDs over biologics is a good approach--just the opposite is probably much better, long-term.

But that is still not quite the right thing: ELIMINATE ALL NSAIDS then FAST; You can do four days at first then increase to 11 days.

And Your chemists can give You the right antibiotics to make sure the AS symptoms do not return even while You are eating and should be committed to NON-STARCHY FOODS: Neem leaves only, if You must, but some great options in India--fake paneer (tofu), fish, fowl, lamb, bitter melon, almonds, sesame seeds in various forms, eggs, cucumbers, etc--these can be found in abundance.

While in Delhi, I was taken to Hakim Sayed Hamid and he wrote a prescription; You might find it helpful:



There is plenty of justification for fasting; do not wait too long before setting things right!

HEALTH,
John

Joined: Jun 2012
Posts: 52
K
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Posts: 52
I am not a big fan of allopathy. It gives a quick fix but create lot of imbalance in body. It cures one one thing and give rise to another.I dont have any other option other then NSAID that is why i have to take it now and biologics is a big risk . I am not going to take it in any condition. I have had long list of diseases since childhood so i do not wanna take this risk.I do not want to grow more diseases and get prone to allergies or infections.
Have you posted this prescription some where else also on internet because i have seen it already. Did it help you anyway without controlling diet because indian diet is full of oily fried stuff. There is nothing here that doesnt have lots of masala and oil.


Life is 10% what it happens to you,
And 90% how you respond to it.............
http://mypartnerspondylitis.blogspot.in/
Joined: Jun 2012
Posts: 52
K
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Posts: 52
If i fast and do not eat meds for even a day i cant even breath . I have had AS since 10 years but such worse condition has come first time. From last 5 years i have been very healthy without any meds or diet control.


Life is 10% what it happens to you,
And 90% how you respond to it.............
http://mypartnerspondylitis.blogspot.in/
Joined: Oct 2008
Posts: 360
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Oct 2008
Posts: 360
Originally Posted By: louiseamos
Lon,,thanks..my tummy is sore..think its with all meds over years ????lower back is worst..has have to use it the most..have middle up to neck soreness too..but lower woow I don't eat a lot of fruit..hate bananas!?!? Eat veg love green stuff cabbage.brockley peas etc!!when worked was on road from 6 am to llpm..didn't eat well at all..pie here sandwich there!!!tons of coffee!!! So for now eating better!!yes I am very miss understood!!!! Even from young age had bad muscle cramps!! Oh my legs felt like muscle came outta place!!think did had to put it back!!

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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More and more it seems that food sensitivities can lead to inflammatory arthritis: gluten, casein, yeast in grains, dairy, beer and bread, respectively.

For me, its casein that I am very allergic / sensitive to and cutting cow's dairy from my diet has helped (my GI tract the most).

If you can find a doctor (naturpath?) who can do IgG or IgA food blood testing, maybe you can find a food allergy link to your spondy.

The link to the gut goes even deeper. So many chronic illnesses seem tied to bad bacteria vs good bacteria in the gut. Perhaps some day when we can have fecal transplant (pill form), perhaps then?

Until then:

Probiotics do help me some.

And LDN has helped me some.

Those are things you could try.

For me, Humira has helped me the very most, for the last year, but I know you can not consider that as an option.

Prior to Humira, I was doing the LDN, vitamin C, other supplements (see below my name), no dairy, probioitics to keep myself as healthy as possible. And then when I flared, 6 days of a methylpred taper (medrol dose pack, just 4 mg pills of methylpred). But I needed the methylpred too often, so finally went to the Humira.

Too, physical therapy, chiropractor, physiatrists, orthopedists have kept me going over the years. Ultrasound, ice and heatů...



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Dec 2010
Posts: 456
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Warrior_AS_Kicker
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Warrior_AS_Kicker
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Joined: Dec 2010
Posts: 456
I was living your exact life a couple years ago with the gut damage, severe pain and kept praying for God to take me. I couldn't do NSAIDs anymore because I developed ulcers. I didn't want a biologic again because I used to get sick a lot on biologics and I kept developing allergies to them. My GI doc and Immunologist encouraged me to go on a biologic again because my gut was too damaged. I went through hell trying Remicade again but then I went to Simponi and life has improved a great deal. I am staying more healthy on a biologic with LDN. I would encourage you to keep trying different med combos until you are satisfied. Don't let the beast win!


Meds -Hizentra, leflunomide, Prednisone
Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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Royal_AS_kicker
Joined: Jun 2010
Posts: 3,865
Hi, I'm sorry you're feeling so bad right now. I wish I could say it will get better, but that is different for everyone. I'd like to share with you a blog post I just read today, that's from a foundation that I believe in. I hope you decide to live. heart
Much respect, Erica


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Sep 2001
Posts: 6,151
Likes: 4
AS Czar
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Hey, kushagra9120:

Yes, I have posted the Hakim's prescription other places and I believe the Unani pressings helped a bit, but had other health issues that superimposed while I was in Delhi.

Of course I do not know where You are from, but Krishna K. I believe is from AP and resolved his AS by sun exposure daily and raw milk; he reasoned that is the way his ancestors lived and did find low levels of vitD and this is common in AS, so taking orally as well as sun exposure is great way and will help heal the gut--which NSAIDs are totally counterproductive. If You are taking these specific allopathic medications Your disease will almost certainly accelerate because of combination with extreme bad diet.

It is difficult to get over the 'hump' in fasting, but it will be well worth the increased pain and gargantuan effort--I will be right here with You every step because I really want to see You eliminate those NSAIDs, even if You are not favorably disposed to the diet. Do this first and then please contact me within the NSD Forum and I will suggest which antibiotic I would use, even if not doing the strictest diet.

HEALTH,
John

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