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Date: 12.01.2015
From: Sean

Subject: Interesting story on RA

This guy is probably making a lot through books etc. but the video on his pain and inflammation are very convincing.

Personally -I don't believe in everything he believes in (he is a vegan) but is really worth watching as it covers some valid / great points. Also being a former comedian / performer he is quite engaging.

http://www.youtube.com/watch?v=en3YF2atfi0
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Date: 16.01.2015
From: Patricia

Subject: Re: Interesting story on RA

It is a very interesting talk isn't it Sean :-) Thank you for posting it. I 'subscribe' to his Facebook page. He does talk a lot of sense and it seems all of his symptoms have gone and he was very poorly at one point. I believe he is an ambassador for RA and the healing of it for the government in Australia or some such like so seems like he is genuine. Another chap who seems quite interesting is Chris Kresser - seems quite knowledgeable too. Of course, as with all these things 'one size doesn't fit all' - I tried vegan and it really didn't suit me so I would never go down that route again - but it is good to listen and read I think whilst also being balanced about what we take on board for ourselves. Thanks for all your information Sean. I really enjoy reading the info you post xx
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Date: 17.01.2015
From: Sean

Subject: Re: Interesting story on RA

Hi Patricia - how are you doing?
I completely agree with you on the one size not fitting all - and I take a more generic view that looking at the complete picture for research on bacteria and diet successes of different kinds, the generic is antibody against different proteins - then the failure of the immune system to Hoover up the self antibodies which then results in a process called epitope spreading with antibodies against more self proteins. It explains the jump to the body creating antibodies against the immune system itself in Sero-positive RA.

I've read some of Chris Kresser's stuff too.
It's funny how you always stumbled on new things - I hadn't heard of Clint Paddison until last week, but he seems to have been around for a while. BTW - I read somewhere else that Clint Paddison in wheat gluten free as well as vegan :-)

So I agree that people can probably reduce their pain on his program - but I align myself more to Weston A Price, and the advice of Natasha Campbell McBride - they in turn seem to have an alignment in healing with diets such as the SCD Specific Carbohydrate diet, GAPS diet and then Paleo and the AutoImmune Protocol diets. When you understand how these diets work is it not a real surprise that antibiotic therapy can also work for some.

I think a vegan diet like his can heal but it will not sustain and build up the body again. He even has to mention that he eats a lot of seaweed to get his vitamin B12.

The true bottom line from my first treatment 30 years ago with Dr. John Mansfield and reading his subsequent books is that delayed anaphylaxis type reactions to many substances can occur in Arthritis and other diseases - even strange ones like tap water, gas from the stove - I even have heard of olive oil!

Elimination diets are crucial - but so so hard :( it's not just nightshades and taking Cod liver oil as our great doctors suggest. My doctor actually had a son with AS and laughed at me when I told her what I do. Then again they only get 2 weeks training in diet at medical school and that training will include whole grains being essential and carbs being the base of the food pyramid.

Have you seen the revised food pyramid for Paleo diets - with protein and vegetables being the base, then nuts seeds then a little fruit and very low carbs.
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Date: 19.01.2015
From: Patricia

Subject: Re: Interesting story on RA

Hi Sean :-) Great to read your reply as always. I thought I did my fair share of reading up but you are amazing!!

Interesting about he antibody against different proteins - guess this is where leaky gut comes in?? Also, why I started out for a good while as sero negative and over the past year now RA Factor apparently - although it was my medical consultant that told me not my rheumatologist ha. I guess the body starts off trying to fend off the proteins and eventually gets so bombarded it can't do any other but succumb and bam we hurt lol. When I look back I was hurting for many years before the docs eventually picked up on anything and by that time I was in a really bad way.

Clint Paddison has done remarkably well and seems to lead a very normal life now but his eating regime is so very strict and wouldn't suit me at all - i felt terrible on a vegan diet. I don't eat meat now but I do eat fish. Have managed to give the milk up for KoKo coconut milk which I like but still haven't managed to give the bread up and I do have a cappuccino on a weekend oops. I am taking tiny steps in the right direction. The diet has been the hardest to master. I am thinking of going for a food intolerance testing and mineral testing to see if that helps. At least it would give me a starting point.

Funny you should mention the SCD and GAPS because it looks like my daughter may be diagnosed with Ulcerative Colitis another autoimmune illness. I feel so sad for her. Anyway, reading up these diets seem to be recommended by some. I will have to have a good search. Apparently, fibre is an issue for UC and only soluble fibre is beneficial.

Have you heard of the Paleo Mom?? She is AIP. Her name is Sarah Ballantyne. Think Paleo would be my favoured eating plan but without the meat for me. It seems do-able and people seems to get along very well with it. Is this what you follow?? Of course the AIP version is very much stricter so I would have to work up to that ha ha. Maybe this year is the year to crack the diet for me. I also have an elimination diet to follow from a Dr Lobur on Facebook. He is a medical doctor who has just become an integrative doctor. Again, he posts information freely which is very kind I think. I did have a go with the elimination diet and a nutritionist. She visited me once and then did everything by email but I felt she wasn't quite experienced enough to deal with my condition - she was just starting out on her journey. Think I have most of the information I need to do it myself really but think the food allergy testing would be a good move. To be honest I am not sure how these diets works so I will have to look that up :-) I am still on the AP and have now reduced my steroids to 6mg from an original 30mg. A triumph I think ha ha. I so wish I could get off them but maybe I can with the added healing of a good nutritional plan. I also take good quality probiotics because these are essential with AP and leaky gut which we must have to be poorly with autoimmune I think.

My rheumatologist doesn't hold much store with diet at all. A lot of doctors don't see that it can help us heal. He really doesn't seem interested BUT he is a great guy and has done his best for me at all times. I think it is up to me to take as much responsibility for my health as I can with his back up. I have been grateful for his care. Of course, diet alone won't always make us better I don't believe - sometimes I do think we need the conventional drugs even if it is just to get us back on our feet to work on our diet - I did anyway.

I haven't seen the revised food pyramid - I will have a look at that.

You take care Sean and I will be looking out for your next bit of information - and thank you for all you do providing us with all you have learnt.

Patricia xx

Here is the elimination diet that I got from Dr David Lobur's Facebook page if any one is interested :-)

https://www.functionalmedicine.org/files/library/elimination-diet-suite_003.pdf


With love and best wishes to everyone xxxx
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Date: 19.01.2015
From: Sean

Subject: Re: Interesting story on RA

Hi Patricia

Really interesting slide show PDF! You seem to be a real explorer on these areas - I have seen the Paleo Mom website and seen some of the great recipes. :)

It's great to see you being able to reduce your medication - but sad to hear about your daughter - I have a 13 year old girl that I worry about in terms of health - my older son seems fairly rock solid health wise, but you never know I guess?

I've learnt not to judge anyone who is on medication - I am aware of how lucky I have been. I did a tough elimination diet as a 19 year old - 30 years ago :) - I was not mature enough to commit. I committed to a restricted diet at age 26 though for a whole year - it was my last chance saloon and these two dieting experiences (with the help of an amazing dietician / Naturopath in Canterbury) set my diet and supplement regime for the next 23 years.

Thanks for the positive comments 😀and I hope your improvements continue.

It's nice to have a doctor that you like and trust - but I think we would all fair better if they took a closer look or got some additional basic training (perhaps a few weeks or so) - I am sure they are in their profession to do their best.

I think medicine is a bit like IT (my job) it moves so quickly and training that was given 10, 15 years ago is no longer cutting edge. For example my son knows more about some aspects of IT than his teachers do. Chocolate and red wine is my weakness - I guess it's my opioid bread substitute!

I wonder what our doctors would say regarding this university lecture on leaky gut and autoimmunity from just November 2014? It's by Alessio Fasano - started as paediatric gastroenterologist but now advises on treatments and research for other autoimmune diseases (you will see RA and my own AS mentioned). It's really funny and interesting :-)

http://www.youtube.com/watch?v=wha30RSxE6w

This guy is an astrophysicist that as you say took control of his own health destiny - but annoys me a bit because he has resources that nobody else has but it shows the potential

http://www.youtube.com/watch?v=Je8YcXQhaT4

Take Care, Sean
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Date: 20.01.2015
From: Patricia

Subject: Re: Interesting story on RA

Oh thanks for these videos, Sean :-) I am going to watch these two and the Clint Patterson one this week to get me more motivated about starting in earnest with the elimination diet again!! I managed six weeks last time lol. My instinct tells me that this would greatly improve my health to get me off the steroids once and for all for starters which would be sooo good.

You have most certainly done amazingly well to research and then stick with your eating plan to wellness. I admire you for that :-) I think getting the right naturopath helps - and I have been given the name of one recently so may try that avenue - although it costs hundreds and hundreds of pounds eek - as you will well know. You never come over as judgemental. I think it is very refreshing that you 'pay it forward' with your knowledge gained. I believe it is important to do that. Everyone is at different stages of illness and times in their life and perhaps information that we read may not seem relevant to us straight away but may come in useful at a later date. Sometimes, we are just too poorly to act on diet/supplements etc at that time but remember it much later when we feel brighter. This is why whatever we learn it is good to share just in case it can help someone along the way.

I wholeheartedly agree that it would be good for doctors to be more holistic with their care. Sadly, this isn't going to happen I don't think in an NHS that is groaning at the seams - very sad - but I do believe that most of the staff within it are trying their very best in difficult circumstances.

Hopefully, your daughter will be absolutely fine :-) The great thing is her eating regime will already be good so the chances are negligible of her going down the same route as you because you are already one step ahead with her health. Of course, as parents we worry about them - always!

Have a great week with the family - precious times.

Take care now

Patricia x
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Date: 10.02.2015
From: Sean

Subject: Re: Interesting story on RA

I would like to share a thread on a another forum where a guy with AS is getting huge benefits with a few weeks from changing his diet...

He had allergy lab tests and found he had reactions to 22 foods!

BTW "TreatMeGently" is my alias on this forum.

Does anyone else think that everyone with an autoimmune disease should be tested???

http://www.patient.co.uk/forums/discuss/new-to-as-324625?page=0&order=Oldest
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Date: 10.02.2015
From: lois lane (marlene)

Subject: Re: Interesting story on RA

Yes Sean I think they should. When my Son was 11 he was diagnosed with Asthma and my Gp sent him along for allergy tests straight away. He was allergic to several things which I was able to keep him away from. The thing that shocked me was some of my friends children with Asthma had never been tested. Why?? I can only think of cost.

Take care.
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Date: 10.02.2015
From: Sean

Subject: Re: Interesting story on RA

Hi Marlene

I asked the chap how much it cost him and he said 300 - for a full York lab screen of many different foods. Seems not too bad if it helps?

I might visit my GP with some evidence and see if I can get Bupa to pay some through my work scheme :-) - I really need to rule out whether beef is one of my trigger foods

I once hijacked my sons skin prick allergy test - and asked the nurse to test me for wheat and she confirmed that the red and white bump I got on my arm was an allergic reaction.

I think a quick skin prick screening test at first would be cheap enough :) and might save a few million along the line.
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Date: 11.02.2015
From: lois (marlene)

Subject: Re: Interesting story on RA

I agree Sean, I am sure it would be cheaper in the long run for allergy testing.
It is well worth a try with BUPA you won't know unless you ask. Good Luck with it.
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